2013 Has been a year from H-E-double hockey sticks. There were some good things that happened in the last 12 months, mostly it has been a year of endurance. The bad stuff has included natural disasters in our backyard. Wildfires followed by flash flooding in and near our city. Luckily our home has not suffered damage from either of these. Our city and surrounding areas have been effected by the natural disasters. In turn the local economy has taken a hit because of the disasters. Several restaurants and stores have closed their doors. My husband has tried several times to be self-employed and it has not resulted in a positive outcome. In July of this year he was terminated from his job. He has since applied and interviewed at numerous places around the city. Only to be told that he is either way over-qualified or under-qualified. He recently accepted a job with Aflac insurane. However, it is commission only and he has not received any commissions yet.
I continue to work two part time jobs and a majority of my time is with my son. He has showed tremendous gains in the last 12 months. He has been discharged out of physical therapy, graduated out of occupational therapy and also graduated out of applied behavior analysis therapy. The only therapy he receives now is speech. He will likely always have some areas that are a struggle for him. For now we continue to implement the strategies learned through the various therapies to help him deal with his sensory challenges. He has learned how to self-regulate to a point that most of his helps are not needed in the classroom (i.e. weighted blanket). At the same time he is very easily distracted. He is nearly six years old, most six year old boys are highly distracted. If he is on task for 5-10 minutes, we are doing very good. He is one of the top performers in his class. He enjoys sharing his ideas with anyone that will listen. Most of his ideas are quirky, especially for a nearly six year old. His favorite gift from Christmas was a Shark rechargeable cordless vacuum cleaner. Most mornings he can be found pushing the vacuum around the house and using his new electric pencil sharpener. He wants to help clean the house, he just doesn't know exactly how to do that. Most recently he sprayed a lot of oven cleaner in the oven, but didn't realize that we would have to wipe out the oven before we could cook with it again. He has written several little books about his ideas (mainly cars, time machines, vacuum cleaners).
2013 also brought with it a milestone in birthdays for me -- the big 4-0. Reaching that birthday has me feeling nostalgic. I find myself looking back on my life so far. I was a career student in my 20s. By the time I finally earned my bachelor's degree I had completed over 200 hours. My thirties were spent meeting Dean and starting our marriage. Now that I am in my forties I am considering continuing my education again. Even though I have a bachelor's degree in special education, I have had very little luck landing a job even as a paraprofessional with a special education program at a public school or private school. I have applied with both public school districts and the school for the deaf and blind. I have counted my applications, it is over 200. There comes a point when I need to look into another possibility of employment.
All this is leading me to look seriously at nursing. The easiest way to start would be to get a CNA and then most likely start working at a long term care facility. The program takes about six weeks to complete and then pass the test. Then the next step is getting hired.
I am concerned that if I am away from my son for hours at a time, that he will regress. That me working will have a negative effect on all the progress he has made. I also look at it from a financial standpoint and really don't see much other choice. I wish it were an easy thing to do.
Monday, December 30, 2013
Saturday, October 12, 2013
Sensory Diet: An Emphasis on Heavy Work
Aiden recently "graduated" out of occupational therapy. One of the most beneficial tools I learned was the use of a sensory diet. These ideas can be used for neuro-typical children as well as children with special needs. He has been having a lot of good days at school. Before we leave the school on most days I let him play at the school playground or park for at least 30 minutes. As the weather gets colder that will be more difficult to do. I have noticed on days that I have not let him play right after school have been more difficult evenings. He is less likely to listen to requests and sit during dinner.
I hope this list of ideas can be beneficial for other parents.
Wilbarger Protocol (brushing and compressions). We mainly do this in the evenings to help him relax to go to sleep. Have also used this before doctor's visits to help him relax. Other times I have used this technique have been when he is listless and needs help to focus. It really does help him relax and focus.
Trampoline. We don't have one, but he gets similar input from bouncing houses. He loves bouncy houses, as do most five year olds.
Swinging. He really enjoys swinging. I remember there was a time when he freaked out when I tried to have him swing. He likes both the regular swings and the tire swing. Lots of opportunities to swing at the school playground and parks. Our backyard has a rather steep downhill slope. No swing set for us.
Heavy blankets/pillow. His grandmother has made both neck wraps and lap pads for him. The important thing with weighted blankets is to use them for limited amounts of time. The neck wrap weight is two pounds. The lap pad weight is three pounds. He has used these items in the classroom, doctor visits and sometimes at home for a calming effect.
Push Me/Pull You (with partner), seated. This is a fun game to play with him. We also play eye contact games while doing these.
Squeeze Toys/Balls. His most recent fidget toy is a tangle toy I got for him. It has several different sensory features to it, ridges, bumps, smooth, clear, colors. He likes little baggies filled with hair gel and glitter, taped closed. He enjoys squishing them.
Push laundry basket on carpet, filled with enough weight that it can't be pushed by a foot. Be sure basket is strong enough that it won't collapse (plastic storage bin). Make this a game: Change items in bin frequently; Make it purposeful by moving groceries from front door to pantry, counting items moved or put away, find as many items as you can that start with the letter "C", etc.; Move items in yard, over grass. With the laundry basket he especially enjoys being my helper to take clothes out of the dryer. He carries the laundry basket back upstairs. Then we continue on making it purposeful. He also helps carry groceries. Outside he helps move big toys outside, pushes and pulls play golf clubs.
Vacuum floors or furniture. He loves this. Putting on the different attachments to vacuum furniture is something he really enjoys and he has to think about how to put the attachment on and connect the pieces together.
Shooting baskets/goals.
These are fun things to do inside when cannot go outside: "Sandwich" between sofa cushions on floor and apply mild pressure or pillows inside a laundry basket all around him to "squeeze".
Roll up self in blanket, then unroll. Roll across room.
Oral Processing/Heavy Work -- can be very calming: Crunchy, chewy food Gum Hard candy Sour flavors Drink through straws Thick fluids through straw (i.e. applesauce, pudding, milkshake) Blow through straw
Clay/Playdough Pull, roll, press, or pinch Shape into letters, numbers Pick beads out Hide small items in clay/playdough and then find them.
Bean bin: He absolutely loved the sensory table at preschool. Kindergarten does not have a sensory table. We have a water table at home. Here are some ideas for a bean bin: Combing for items, digging, shoveling, pouring
Sandbox: We have a sandbox. Ideas include: Digging, pushing, pouring, pushing cars or trucks.
Paint a wall with only a roller. Can do outside with water on roller.
Push a wall: with hands, hips, shoulder, back or with feet.
Swimming: He absolutely loves to swim. Can't get enough of the water. Needs to work on learning how to breathe as he swims under the water, but it will come.
Crab walk, Elephant walk, Bear walk, any animal walk.
Push large toy truck/car on hands/knees.
Shovel sand, move rocks, building with blocks, snow play
Coloring and cutting activities.
Most important of all is to have consistent routines for daily activities including the following: wake-up, dressing, mealtimes, bathing, and bedtime.
I hope this list is beneficial for you and your family.
I hope this list of ideas can be beneficial for other parents.
Wilbarger Protocol (brushing and compressions). We mainly do this in the evenings to help him relax to go to sleep. Have also used this before doctor's visits to help him relax. Other times I have used this technique have been when he is listless and needs help to focus. It really does help him relax and focus.
Trampoline. We don't have one, but he gets similar input from bouncing houses. He loves bouncy houses, as do most five year olds.
Swinging. He really enjoys swinging. I remember there was a time when he freaked out when I tried to have him swing. He likes both the regular swings and the tire swing. Lots of opportunities to swing at the school playground and parks. Our backyard has a rather steep downhill slope. No swing set for us.
Heavy blankets/pillow. His grandmother has made both neck wraps and lap pads for him. The important thing with weighted blankets is to use them for limited amounts of time. The neck wrap weight is two pounds. The lap pad weight is three pounds. He has used these items in the classroom, doctor visits and sometimes at home for a calming effect.
Push Me/Pull You (with partner), seated. This is a fun game to play with him. We also play eye contact games while doing these.
Squeeze Toys/Balls. His most recent fidget toy is a tangle toy I got for him. It has several different sensory features to it, ridges, bumps, smooth, clear, colors. He likes little baggies filled with hair gel and glitter, taped closed. He enjoys squishing them.
Push laundry basket on carpet, filled with enough weight that it can't be pushed by a foot. Be sure basket is strong enough that it won't collapse (plastic storage bin). Make this a game: Change items in bin frequently; Make it purposeful by moving groceries from front door to pantry, counting items moved or put away, find as many items as you can that start with the letter "C", etc.; Move items in yard, over grass. With the laundry basket he especially enjoys being my helper to take clothes out of the dryer. He carries the laundry basket back upstairs. Then we continue on making it purposeful. He also helps carry groceries. Outside he helps move big toys outside, pushes and pulls play golf clubs.
Vacuum floors or furniture. He loves this. Putting on the different attachments to vacuum furniture is something he really enjoys and he has to think about how to put the attachment on and connect the pieces together.
Shooting baskets/goals.
These are fun things to do inside when cannot go outside: "Sandwich" between sofa cushions on floor and apply mild pressure or pillows inside a laundry basket all around him to "squeeze".
Roll up self in blanket, then unroll. Roll across room.
Oral Processing/Heavy Work -- can be very calming: Crunchy, chewy food Gum Hard candy Sour flavors Drink through straws Thick fluids through straw (i.e. applesauce, pudding, milkshake) Blow through straw
Clay/Playdough Pull, roll, press, or pinch Shape into letters, numbers Pick beads out Hide small items in clay/playdough and then find them.
Bean bin: He absolutely loved the sensory table at preschool. Kindergarten does not have a sensory table. We have a water table at home. Here are some ideas for a bean bin: Combing for items, digging, shoveling, pouring
Sandbox: We have a sandbox. Ideas include: Digging, pushing, pouring, pushing cars or trucks.
Paint a wall with only a roller. Can do outside with water on roller.
Push a wall: with hands, hips, shoulder, back or with feet.
Swimming: He absolutely loves to swim. Can't get enough of the water. Needs to work on learning how to breathe as he swims under the water, but it will come.
Crab walk, Elephant walk, Bear walk, any animal walk.
Push large toy truck/car on hands/knees.
Shovel sand, move rocks, building with blocks, snow play
Coloring and cutting activities.
Most important of all is to have consistent routines for daily activities including the following: wake-up, dressing, mealtimes, bathing, and bedtime.
I hope this list is beneficial for you and your family.
Monday, September 30, 2013
Celebrating Mothers of Children with Special Needs
Later this week will be the anniversary of my mother's birthday. October 4th was her birthday. She passed away of cancer before she reached her 50th birthday. If she were still alive, she would be 76 years old. It is difficult for me to think of my mother as an elderly woman, since she passed away so young. As the years have passed and I have also become a mother, I think about the things I have in common with her. I wonder if she would approve of my job as a mother to my son.
All three of us had unique needs. My oldest brother, Andy, had leukemia when he was a young child. It was treated and he has lived a normal life. The next oldest brother, Wil, discovered he was losing his eyesight when he was 16 years old. Through many tests it was found that he has a rare genetic disorder called Leber's Hereditary Optic Neuropathy. Mom only lived for a couple more years after Wil's diagnosis. I was the baby of the family; painfully shy, had terrible allergies and asthma. My mother also had another daughter before she and dad were married. That daughter found us several years after mom passed away. We did not get the opportunity to share life on earth with our mom as we grew into adults and have had children of our own.
This message is a thank you to my mom. Thank you for everything you did for all us kids. I appreciate all you ever did for all of us. I wish I had said thank you more before God called you home.
As mothers we play a unique role in our children's lives... one that may even go unnoticed or taken for granted.
Our role becomes even more unique and significant when we have a child with special needs; from Sensory Processing Disorders to Down Syndrome, ADD/ADHD to Learning Disabilities, Autism to Aspergers, Fragile X to Developmental Delays, Cerebral Palsy to PDD. (just to name a few!)
Every day brings unique challenges that can wear us down, or build us up.
For, within each day...
•we may have every strength and weakness of our own tested
•we will have to fight and advocate for our children
•we will choose to protect our integrity and theirs
•we will stand firm amongst criticism and in our beliefs
•we can choose to embrace their uniqueness
•we will love them with every part of our being
•we can find renewed hope and strength
•we can find peace and love where there may not have otherwise been
•we may cry, grieve, and mourn what we can not, or do not have
•yet, we can choose to celebrate, value, and appreciate what we do!
For most of us, we face our lives enmeshed with a special needs child with an incredible amount of strength and courage. We count our blessings, we realize the frailty and preciousness of life, we find wings we may have never had, and we, in the end, inspire others and show our children amazing and unconditional love. We climb a tough mountain, for sure... but, the tougher it is, the steeper it is, the more hurdles we encounter on the way, the more we appreciate the view from the top. We have seen and learned things most people don't get a chance to. We value differences, validate each other, and know a love and appreciation deeper than most!
To all the moms (and dads!) out there who embrace their child with special needs and love them in such a unique way...
•I applaud you and praise you for your unique sacrifice!
•I want you to feel my arms wrapping around you with a tremendous THANK YOU HUG!
•I hope you keep dreaming, keep loving, keep sharing, keep finding hope and strength.
•I wish for you to reach out and help others learn from your struggles and connect with the world in a way you never dreamed possible!
•And, if you still have the opportunity to do so, I hope you will tell your mom (and dad!) how much you appreciate what THEY did for YOU!
An Inspirational Poem For Moms... THIS ONE'S FOR YOU ;0)
One Flaw In Women
Author Unknown --------------------------------------------------------------------------------
By the time the Lord made woman,
He was into his sixth day of working overtime.
An angel appeared and said,
"Why are you spending so much time on this one?"
And the Lord answered, "Have you seen my spec sheet on her?
She has to be completely washable, but not plastic,
have over 200 movable parts, all replaceable
and able to run on diet coke and leftovers,
have a lap that can hold four children at one time,
have a kiss that can cure anything from a scraped knee to a broken heart
-and she will do everything
with only two hands."
The angel was astounded at the requirements.
"Only two hands!? No way!
And that's just on the standard model?
That's too much work for one day.
Wait until tomorrow to finish."
But I won't," the Lord protested.
"I am so close to finishing this creation that is so close to my own heart.
She already heals herself when she is sick
AND can work 18 hour days."
The angel moved closer and touched the woman.
"But you have made her so soft, Lord."
"She is soft," the Lord agreed,
"but I have also made her tough.
You have no idea what she can endure or accomplish."
"Will she be able to think?", asked the angel.
The Lord replied,
"Not only will she be able to think,
she will be able to reason and negotiate."
The angel then noticed something,
and reaching out, touched the woman's cheek.
"Oops, it looks like you have a leak in this model.
I told you that you were trying to put too much into this one."
"That's not a leak,"
the Lord corrected,
"that's a tear!"
"What's the tear for?" the angel asked.
The Lord said, "The tear is her way of expressing her joy,
her sorrow, her pain, her disappointment, her love,
her loneliness, her grief and her pride."
The angel was impressed.
"You are a genius, Lord.
You thought of everything!
Woman is truly amazing."
And she is!
Women have strengths that amaze men.
They bear hardships and they carry burdens,
but they hold happiness,
love and joy.
They smile when they want to scream.
They sing when they want to cry.
They cry when they are happy
and laugh when they are nervous.
They fight for what they believe in.
They stand up to injustice.
They don't take "no" for an answer
when they believe there is a better solution.
They go without so their family can have.
They go to the doctor with a frightened friend.
They love unconditionally.
They cry when their children excel
and cheer when their friends get awards.
They are happy when they hear about
a birth or a wedding.
Their hearts break when a friend dies.
They grieve at the loss of a family member,
yet they are strong when they think there is no strength left.
They know that a hug and a kiss
can heal a broken heart.
Women come in all shapes, sizes and colors.
They'll drive, fly, walk, run or e-mail you
to show how much they care about you.
The heart of a woman is what makes the world keep turning.
They bring joy, hope and love.
They have compassion and ideals.
They give moral support to their family and friends.
Women have vital things to say and everything to give.
However, If There Is One Flaw In Women,
It Is That They Forget Their Worth.
All three of us had unique needs. My oldest brother, Andy, had leukemia when he was a young child. It was treated and he has lived a normal life. The next oldest brother, Wil, discovered he was losing his eyesight when he was 16 years old. Through many tests it was found that he has a rare genetic disorder called Leber's Hereditary Optic Neuropathy. Mom only lived for a couple more years after Wil's diagnosis. I was the baby of the family; painfully shy, had terrible allergies and asthma. My mother also had another daughter before she and dad were married. That daughter found us several years after mom passed away. We did not get the opportunity to share life on earth with our mom as we grew into adults and have had children of our own.
This message is a thank you to my mom. Thank you for everything you did for all us kids. I appreciate all you ever did for all of us. I wish I had said thank you more before God called you home.
As mothers we play a unique role in our children's lives... one that may even go unnoticed or taken for granted.
Our role becomes even more unique and significant when we have a child with special needs; from Sensory Processing Disorders to Down Syndrome, ADD/ADHD to Learning Disabilities, Autism to Aspergers, Fragile X to Developmental Delays, Cerebral Palsy to PDD. (just to name a few!)
Every day brings unique challenges that can wear us down, or build us up.
For, within each day...
•we may have every strength and weakness of our own tested
•we will have to fight and advocate for our children
•we will choose to protect our integrity and theirs
•we will stand firm amongst criticism and in our beliefs
•we can choose to embrace their uniqueness
•we will love them with every part of our being
•we can find renewed hope and strength
•we can find peace and love where there may not have otherwise been
•we may cry, grieve, and mourn what we can not, or do not have
•yet, we can choose to celebrate, value, and appreciate what we do!
For most of us, we face our lives enmeshed with a special needs child with an incredible amount of strength and courage. We count our blessings, we realize the frailty and preciousness of life, we find wings we may have never had, and we, in the end, inspire others and show our children amazing and unconditional love. We climb a tough mountain, for sure... but, the tougher it is, the steeper it is, the more hurdles we encounter on the way, the more we appreciate the view from the top. We have seen and learned things most people don't get a chance to. We value differences, validate each other, and know a love and appreciation deeper than most!
To all the moms (and dads!) out there who embrace their child with special needs and love them in such a unique way...
•I applaud you and praise you for your unique sacrifice!
•I want you to feel my arms wrapping around you with a tremendous THANK YOU HUG!
•I hope you keep dreaming, keep loving, keep sharing, keep finding hope and strength.
•I wish for you to reach out and help others learn from your struggles and connect with the world in a way you never dreamed possible!
•And, if you still have the opportunity to do so, I hope you will tell your mom (and dad!) how much you appreciate what THEY did for YOU!
An Inspirational Poem For Moms... THIS ONE'S FOR YOU ;0)
One Flaw In Women
Author Unknown --------------------------------------------------------------------------------
By the time the Lord made woman,
He was into his sixth day of working overtime.
An angel appeared and said,
"Why are you spending so much time on this one?"
And the Lord answered, "Have you seen my spec sheet on her?
She has to be completely washable, but not plastic,
have over 200 movable parts, all replaceable
and able to run on diet coke and leftovers,
have a lap that can hold four children at one time,
have a kiss that can cure anything from a scraped knee to a broken heart
-and she will do everything
with only two hands."
The angel was astounded at the requirements.
"Only two hands!? No way!
And that's just on the standard model?
That's too much work for one day.
Wait until tomorrow to finish."
But I won't," the Lord protested.
"I am so close to finishing this creation that is so close to my own heart.
She already heals herself when she is sick
AND can work 18 hour days."
The angel moved closer and touched the woman.
"But you have made her so soft, Lord."
"She is soft," the Lord agreed,
"but I have also made her tough.
You have no idea what she can endure or accomplish."
"Will she be able to think?", asked the angel.
The Lord replied,
"Not only will she be able to think,
she will be able to reason and negotiate."
The angel then noticed something,
and reaching out, touched the woman's cheek.
"Oops, it looks like you have a leak in this model.
I told you that you were trying to put too much into this one."
"That's not a leak,"
the Lord corrected,
"that's a tear!"
"What's the tear for?" the angel asked.
The Lord said, "The tear is her way of expressing her joy,
her sorrow, her pain, her disappointment, her love,
her loneliness, her grief and her pride."
The angel was impressed.
"You are a genius, Lord.
You thought of everything!
Woman is truly amazing."
And she is!
Women have strengths that amaze men.
They bear hardships and they carry burdens,
but they hold happiness,
love and joy.
They smile when they want to scream.
They sing when they want to cry.
They cry when they are happy
and laugh when they are nervous.
They fight for what they believe in.
They stand up to injustice.
They don't take "no" for an answer
when they believe there is a better solution.
They go without so their family can have.
They go to the doctor with a frightened friend.
They love unconditionally.
They cry when their children excel
and cheer when their friends get awards.
They are happy when they hear about
a birth or a wedding.
Their hearts break when a friend dies.
They grieve at the loss of a family member,
yet they are strong when they think there is no strength left.
They know that a hug and a kiss
can heal a broken heart.
Women come in all shapes, sizes and colors.
They'll drive, fly, walk, run or e-mail you
to show how much they care about you.
The heart of a woman is what makes the world keep turning.
They bring joy, hope and love.
They have compassion and ideals.
They give moral support to their family and friends.
Women have vital things to say and everything to give.
However, If There Is One Flaw In Women,
It Is That They Forget Their Worth.
Wednesday, July 31, 2013
More Summer Reading July
After today another month will be gone. This summer has raced by. Sometimes I have felt like I have been always on the go; taking my son to various birthday parties, doctor appointments, swimming lessons and the beloved parks. We have not taken a family trip this year due to financial circumstances. We have journeyed to various places through books. Have been able to extend the nature around us in books, for example the book about butterflies and another book about Fibonacci numbers. The world is a fascinating place. We have learned how things work with the book, How Cool Is That?
Before I have to send these books back to the library, I thought I would jot down the list of books we found at the base library a few weeks ago. Most of these books are about science. My son has a new fascination about turtles. So, we checked out several books about turtles. I hope this list of books will inspire you to find these titles or other similar books. Enjoy!
1. The Pencil by Allan Ahlberg illustrated by Bruce Ingman
2. Franklin's Bad Day by Paulette Bourgeois illustrated by Brenda Clark
3. The Great Dog Wash by Shellie Braeuner illustrated by Robert Neubecker
4. The 3 Little Dassies by Jan Brett (love her books)
5. Growing Patterns: Fibonacci Numbers in Nature by Sarah C. Campbell Photographs by Sarah C. Campbell and Richard P. Campbell
6. How Cool Is This? An up-close, inside look at how things work -- DK Book
7. Eyewitness Books: Butterfly and Moth -- DK Book
8. Watch me Grow: Turtle -- DK Book
9. Back to School Tortoise written by Lucy M. George illustrated by Merel Eyckerman
10. My Turtle by Cate Foley
11. How to Hide a Meadow Frog and other amphibians by Ruth Heller
12. Bow-Wow Bugs a Bug by Mark Newgarden and Megan Montague Cash
13. Kiss Kiss! by Margaret Wild and Bridget Strevens-Marzo
14. The Mouse, the Cat, and Grandmother's Hat by Nancy Willard illustrated by Jenny Mattheson
15. The 3 Bears and Goldilocks by Margaret Willey illustrated by Heather M. Solomon
Before I have to send these books back to the library, I thought I would jot down the list of books we found at the base library a few weeks ago. Most of these books are about science. My son has a new fascination about turtles. So, we checked out several books about turtles. I hope this list of books will inspire you to find these titles or other similar books. Enjoy!
1. The Pencil by Allan Ahlberg illustrated by Bruce Ingman
2. Franklin's Bad Day by Paulette Bourgeois illustrated by Brenda Clark
3. The Great Dog Wash by Shellie Braeuner illustrated by Robert Neubecker
4. The 3 Little Dassies by Jan Brett (love her books)
5. Growing Patterns: Fibonacci Numbers in Nature by Sarah C. Campbell Photographs by Sarah C. Campbell and Richard P. Campbell
6. How Cool Is This? An up-close, inside look at how things work -- DK Book
7. Eyewitness Books: Butterfly and Moth -- DK Book
8. Watch me Grow: Turtle -- DK Book
9. Back to School Tortoise written by Lucy M. George illustrated by Merel Eyckerman
10. My Turtle by Cate Foley
11. How to Hide a Meadow Frog and other amphibians by Ruth Heller
12. Bow-Wow Bugs a Bug by Mark Newgarden and Megan Montague Cash
13. Kiss Kiss! by Margaret Wild and Bridget Strevens-Marzo
14. The Mouse, the Cat, and Grandmother's Hat by Nancy Willard illustrated by Jenny Mattheson
15. The 3 Bears and Goldilocks by Margaret Willey illustrated by Heather M. Solomon
Sunday, July 7, 2013
Books Reading in July With My Son
Here are some books I am reading to my son during the month of July. He especially enjoys stories that are funny. Like a lot of children, he enjoys stories that are about animals. Hope you enjoy reading through the titles.
Recently my son had an anaphylactic reaction to an allergy shot. I had been looking for children's books about allergies. A couple of holds became available recently. The titles are How to Deal with Allergies and The BugaBees friends with food allergies.
Perhaps I have listed a book that you have not already shared with your child. Enjoy your summer reading. Now that it is July, it won't be long until school is back in session. Hope this list of books inspires you to go on a book journey with your child during the summer months especially.
These books we found at the city library.
1. My Pinky Finger by Betsy Franco illustrated by Margeaux Lucas
2. How to Deal with Allergies by Lynette Robbins
3. The BugaBees friends with food allergies by Amy Recob illustrated by 64 colors
4. Dinah! a cat adventure story and pictures by Kae Nishimura
5. sun + screen = sunscreen by Amanda Rondeau
6. The Broken Cat by Lynne Rae Perkins
I found these books at the Peterson AFB library. If you are military or retired military or a dependent of a military service member, please don't forget about the library located at your local installation. There are a lot of books available here as well.
1. A Bed Full of Cats by Holly Keller
2. Biscuit in the Garden by Alyssa Satin Capucilli pictures by Pat Shories
3. Car Goes Far by Michael Garland
4. A Children's Zoo by Tana Hoban
5. Clarence the Copy Cat story by Patricia Lakin pictures by John Manders
6. A Dragon on the Doorstep written by Stella Blackstone illustrated by Debbie Harter
7. How Do You Hug a Porcupine? by Laurie Isop illustrated by Gwen Millward
8. Katie Loves the Kittens by John Himmelman
9. A Kiss for Little Bear by Else Holmelund Minarik pictures by Maurice Sendak
10. Mr. Putney's Quacking Dog by Jon Agee
11. The Prince Has a Boo-Boo! Pictures by R.W. Alley
12. Smile! by Leigh Hodgkinson
13. Stinky a toon book by Eleanor Davis
Recently my son had an anaphylactic reaction to an allergy shot. I had been looking for children's books about allergies. A couple of holds became available recently. The titles are How to Deal with Allergies and The BugaBees friends with food allergies.
Perhaps I have listed a book that you have not already shared with your child. Enjoy your summer reading. Now that it is July, it won't be long until school is back in session. Hope this list of books inspires you to go on a book journey with your child during the summer months especially.
These books we found at the city library.
1. My Pinky Finger by Betsy Franco illustrated by Margeaux Lucas
2. How to Deal with Allergies by Lynette Robbins
3. The BugaBees friends with food allergies by Amy Recob illustrated by 64 colors
4. Dinah! a cat adventure story and pictures by Kae Nishimura
5. sun + screen = sunscreen by Amanda Rondeau
6. The Broken Cat by Lynne Rae Perkins
I found these books at the Peterson AFB library. If you are military or retired military or a dependent of a military service member, please don't forget about the library located at your local installation. There are a lot of books available here as well.
1. A Bed Full of Cats by Holly Keller
2. Biscuit in the Garden by Alyssa Satin Capucilli pictures by Pat Shories
3. Car Goes Far by Michael Garland
4. A Children's Zoo by Tana Hoban
5. Clarence the Copy Cat story by Patricia Lakin pictures by John Manders
6. A Dragon on the Doorstep written by Stella Blackstone illustrated by Debbie Harter
7. How Do You Hug a Porcupine? by Laurie Isop illustrated by Gwen Millward
8. Katie Loves the Kittens by John Himmelman
9. A Kiss for Little Bear by Else Holmelund Minarik pictures by Maurice Sendak
10. Mr. Putney's Quacking Dog by Jon Agee
11. The Prince Has a Boo-Boo! Pictures by R.W. Alley
12. Smile! by Leigh Hodgkinson
13. Stinky a toon book by Eleanor Davis
Saturday, June 15, 2013
What I Have Learned from My Son
When Aiden was a baby, he was born six weeks preterm and spent three weeks in the NICU. He is still very immature socially. At 5 1/2, he is a handsome, sweet, tirelessly curious boy who notices minute details in keys, cars, and architecture, and can recall them easily. He enthusiastically designs and directs family projects like car washes and time machines. Loves to play in water, is learning to swim, loves to dance, lawnmowers, helicopters, planes, dolphins, cats, dogs, and the idea of time traveling.
Autism is part of my son Aiden’s biology, as much as the shape of his nose and the color of his skin. I want the world to welcome him for the beautiful person he is. As a parent, an activist, and an ally of the autistic community, I want public acceptance of autistic people, not just autism “awareness.” I don’t want my son or any autistic person to be feared or pitied for a fundamental part of their being. I don’t want Aiden to feel ashamed of himself, or to have to hide who he is, to be included. That’s why I support the autistic community’s celebration of April as Autism Acceptance Month.
I didn’t come easily to this place of acceptance. My experiences of becoming a parent and my friendships with autistic people led me to it. So let me share with you my journey of raising my son Aiden. I’ll start way back, in the early days of my marriage.
Like every couple, my husband and I transitioned from the honeymoon stage to the reality stage, complete with arguments about toothpaste tubes and dishwasher loading. Our ideas of what should be happening, and what was actually happening, were compounded by military life. He had to go to Greenland for a year tour when we had only been married seven months. After trying to work through these difficulties on our own, I sought professional help. When he returned my husband sat on the couch with a psychiatrist who asked him, “How can I help you?” My husband replied, “It’s my wife. She’s having a really hard time. She’s upset that I have to be away for my job. She doesn’t want to do anything fun. Even when we see a movie, she ends up crying.” My husband looked at the psychiatrist holding his pen and pad. The psychiatrist replied, “Well, now we know why your wife should be here. Why are you here?”
We were both married previously. He has a daughter from his previous marriage. I didn't have any children. I had even seriously thought about adoption since I didn't conceive earlier in life after being married for five years. In 2008 my husband and I got lucky and I gave birth to a baby boy. What we didn’t know was that our baby had been struggling in utero. By the time he was born, he was very blue and whisked away to the NICU right away. He couldn’t breathe on his own. He couldn't eat and breathe at the same time for the first few days. He had a couple of rounds of jaundice. Our precious baby boy was in such bad shape that we weren’t allowed to hold him, touch him, cuddle him skin-to-skin, or any of the other lovely things that usually happen when a baby is born. Instead, I got up close and personal with a breast pump. Not how I thought I would be spending the days after my son was born, in a room trying to express milk for my son that would be stored when he would eventually be able to consume it.
By the time we left the hospital three weeks later, however, the doctors only told me that he may have learning difficulties later in life. They told me that a person from the local university would be in touch for continued early childhood screenings to make sure he is reaching milestones on time. I figured this was a good thing. I looked forward to the visits from Ms. Thea. She always told me that my son was on target developmentally. One time I noticed she thought Aiden's eye contact was odd. She said, hmmm... Does he sustain a gaze with you? I said, yes usually. It was not brought up again. Later on I noticed lack of eye contact, mainly at bedtime.
At his two month well baby visit. The neonatologist was concerned about his weight. He wasn't gaining like he should. The doctor was concerned about his brain development. I did as the doctor instructed, still lots of colic and spit up continued until his first birthday.
As Aiden passed his second birthday, I began keeping track of the ways his development differed from what I expected. He loved to play outside, but seemed more clumsy than a usual two year old. We went to the ER for a couple of his accidents. He still has a scar near his eyebrow from a doctor gluing his skin back together. He had a fit during bath time. Bath time became more and more of a struggle. He did not like to have his hair washed. I tried to hold him, but he was slippery from being in the tub getting clean and he banged his head on the soap dish in the tub while being upset with me for washing his hair. He reacted in ways I didn’t expect to noises, crowds, crying babies, and children. He seemed happy, but he was also extremely anxious. When I questioned the doctors, they stated categorically that it wasn’t autism, because he was too social and cuddly (a myth). Another professional said it wasn’t autism because Aiden responded to his name (another myth). A third thought we would have to wait to find out anything (also not true).
When Aiden was three, I put him in a home day care. At the time the lady running the daycare told me that my son should be tested for autism. She observed several behaviors that were red flags. I got a referral to a psychologist and was told that no my son does not have autism, he is very immature for his age and also displays ADHD tendencies. I was told to get a leash for my son. Be patient and come back in six months or so if still concerned. He also alluded to telling me that my parenting skills were subpar. I never went back to that specialist.
The following year he started preschool at our neighborhood school. All this time I keep thinking to myself that he has something going on... not sure if it is autism or not. I share my concerns with his teacher. She writes a letter. Again go to a doctor voicing concerns. This time went to a different pediatrician. Finally have a full evaluation done. January of 2013 I was told officially that he is being diagnosed on the spectrum. It wasn't totally shocking, but still a grieving process happened. That day I dropped Aiden off at preschool as usual and then went home and cried and cried. Cried almost as hard as the day my parents died. In a way was the day of a death of a dream. The dream that my son would not need any special services in his entire life. As the diagnosis sunk in, I thought – how can I fix this? What are the rules? I knew how to manipulate Aiden’s body to teach him how to move. How could I reach into my baby’s head and fix his brain?
I have a degree in special education. I dug out my old book from Greenspan and studied Floortime. A lot of it is usual preschool things. The aim of this therapy was not to enable me to “fix” my child, but to learn more about him: How Aiden processes sensory input and responds to the world, how he uses language, what makes him laugh, what frightens him. This philosophy laid the foundation for how I think about autism.
I thought autism was Aiden’s problem and I was going to learn the rules of fixing him. Instead, what I learned was that the problem was with me. I would need to question every assumption that society had taught me about my son. Me — I needed to challenge everything I had ever learned about autism.
We need to challenge how autism is defined — as a set of behaviors and deficits – because this description leads us inexorably to “fixing” autistic people. Autism is a way that the brain takes in, processes, and responds to information. This way of processing results in variations in the way the world is experienced and the ways that learning, communication, and movement occur. Autistic people develop skills on a different timetable or in a different order than expected.
But autism also comes with a set of strengths – a deep passion for interests, the ability to recognize visual, musical, social, or emotional patterns, and a strong individuality. When we ignore autistic strengths, we ourselves become stuck on fixing autistic people, rather than building on their natural talents.
We need to challenge how autism is portrayed in the media. Using fear, sadness, and pity to generate donations devalues autistic lives and terrorizes parents. Imagine never seeing a positive image of yourself or your child in the media. Imagine always being seen as an object of pity. The negative portrayal of autistic people and their families sends the message that their lives are joyless, worthless, and powerless. Instead of this unrelenting image of fear, we need to hear more stories of real autistic people’s lives – their joys, successes, and what helps them thrive.
We need to question the perception that disabled lives are pitiable. Our history and culture defines “normal” and anyone different is seen as less than. We are programmed to see those who are not white, male, and heterosexual, with certain physical and neurological characteristics, as not normal. This view explains why white skin is seen as the default and black skin is seen as different. It explains why women in business are told to think like men, and why any display of emotion is labeled a sign of weakness. It sends a message that anything different from “normal” is not good enough.
This is why I cried when I first learned that my son would have disabilities and be perceived as “different.” In that moment, my child’s potential was erased by my unconscious biases. Unknowingly, I had bought into the idea that anything other than a certain set of physical and neurological characteristics is a life of less than, a pitiful existence. What did that say about how I thought of as myself as a woman? What did that say about my relationships with black people? Gay people? About people with other disabilities? What did that say about my relationship to my own child? We need to challenge the belief that difference is less than. Our ideas about what is “normal” need to change.
We need to examine our response to autism. When we start with the incorrect premise that autistic people don’t understand or misbehave, we end up with behavioral programs directed at training them to act in “normal” ways. By recognizing that they already communicate and understand, we can identify the obstacles that make it difficult for them. We can move from trying to fix the person to giving them the supports they need. These supports include sensory-friendly environments, devices to assist communication, acceptance of moving around and stimming, and methods of learning that come most naturally to them. Creating supports like this are like building ramps for autistic people, instead of forcing them to climb stairs that exhaust and exclude them.
The Grand Lesson
After my child was diagnosed with autism, the grand lesson finally got through to me. Life isn’t about finding sets of rules. It’s about seeing my own child, other people’s children, and other adults behaving in ways that I didn’t expect, and then challenging my own prejudices and reactions. It’s about learning to broaden our narrow perceptions of normal, thinking carefully about what we mean when we say “different,” and how we define happiness.
Autism is part of my son Aiden’s biology, as much as the shape of his nose and the color of his skin. I want the world to welcome him for the beautiful person he is. As a parent, an activist, and an ally of the autistic community, I want public acceptance of autistic people, not just autism “awareness.” I don’t want my son or any autistic person to be feared or pitied for a fundamental part of their being. I don’t want Aiden to feel ashamed of himself, or to have to hide who he is, to be included. That’s why I support the autistic community’s celebration of April as Autism Acceptance Month.
I didn’t come easily to this place of acceptance. My experiences of becoming a parent and my friendships with autistic people led me to it. So let me share with you my journey of raising my son Aiden. I’ll start way back, in the early days of my marriage.
Like every couple, my husband and I transitioned from the honeymoon stage to the reality stage, complete with arguments about toothpaste tubes and dishwasher loading. Our ideas of what should be happening, and what was actually happening, were compounded by military life. He had to go to Greenland for a year tour when we had only been married seven months. After trying to work through these difficulties on our own, I sought professional help. When he returned my husband sat on the couch with a psychiatrist who asked him, “How can I help you?” My husband replied, “It’s my wife. She’s having a really hard time. She’s upset that I have to be away for my job. She doesn’t want to do anything fun. Even when we see a movie, she ends up crying.” My husband looked at the psychiatrist holding his pen and pad. The psychiatrist replied, “Well, now we know why your wife should be here. Why are you here?”
We were both married previously. He has a daughter from his previous marriage. I didn't have any children. I had even seriously thought about adoption since I didn't conceive earlier in life after being married for five years. In 2008 my husband and I got lucky and I gave birth to a baby boy. What we didn’t know was that our baby had been struggling in utero. By the time he was born, he was very blue and whisked away to the NICU right away. He couldn’t breathe on his own. He couldn't eat and breathe at the same time for the first few days. He had a couple of rounds of jaundice. Our precious baby boy was in such bad shape that we weren’t allowed to hold him, touch him, cuddle him skin-to-skin, or any of the other lovely things that usually happen when a baby is born. Instead, I got up close and personal with a breast pump. Not how I thought I would be spending the days after my son was born, in a room trying to express milk for my son that would be stored when he would eventually be able to consume it.
By the time we left the hospital three weeks later, however, the doctors only told me that he may have learning difficulties later in life. They told me that a person from the local university would be in touch for continued early childhood screenings to make sure he is reaching milestones on time. I figured this was a good thing. I looked forward to the visits from Ms. Thea. She always told me that my son was on target developmentally. One time I noticed she thought Aiden's eye contact was odd. She said, hmmm... Does he sustain a gaze with you? I said, yes usually. It was not brought up again. Later on I noticed lack of eye contact, mainly at bedtime.
At his two month well baby visit. The neonatologist was concerned about his weight. He wasn't gaining like he should. The doctor was concerned about his brain development. I did as the doctor instructed, still lots of colic and spit up continued until his first birthday.
As Aiden passed his second birthday, I began keeping track of the ways his development differed from what I expected. He loved to play outside, but seemed more clumsy than a usual two year old. We went to the ER for a couple of his accidents. He still has a scar near his eyebrow from a doctor gluing his skin back together. He had a fit during bath time. Bath time became more and more of a struggle. He did not like to have his hair washed. I tried to hold him, but he was slippery from being in the tub getting clean and he banged his head on the soap dish in the tub while being upset with me for washing his hair. He reacted in ways I didn’t expect to noises, crowds, crying babies, and children. He seemed happy, but he was also extremely anxious. When I questioned the doctors, they stated categorically that it wasn’t autism, because he was too social and cuddly (a myth). Another professional said it wasn’t autism because Aiden responded to his name (another myth). A third thought we would have to wait to find out anything (also not true).
When Aiden was three, I put him in a home day care. At the time the lady running the daycare told me that my son should be tested for autism. She observed several behaviors that were red flags. I got a referral to a psychologist and was told that no my son does not have autism, he is very immature for his age and also displays ADHD tendencies. I was told to get a leash for my son. Be patient and come back in six months or so if still concerned. He also alluded to telling me that my parenting skills were subpar. I never went back to that specialist.
The following year he started preschool at our neighborhood school. All this time I keep thinking to myself that he has something going on... not sure if it is autism or not. I share my concerns with his teacher. She writes a letter. Again go to a doctor voicing concerns. This time went to a different pediatrician. Finally have a full evaluation done. January of 2013 I was told officially that he is being diagnosed on the spectrum. It wasn't totally shocking, but still a grieving process happened. That day I dropped Aiden off at preschool as usual and then went home and cried and cried. Cried almost as hard as the day my parents died. In a way was the day of a death of a dream. The dream that my son would not need any special services in his entire life. As the diagnosis sunk in, I thought – how can I fix this? What are the rules? I knew how to manipulate Aiden’s body to teach him how to move. How could I reach into my baby’s head and fix his brain?
I have a degree in special education. I dug out my old book from Greenspan and studied Floortime. A lot of it is usual preschool things. The aim of this therapy was not to enable me to “fix” my child, but to learn more about him: How Aiden processes sensory input and responds to the world, how he uses language, what makes him laugh, what frightens him. This philosophy laid the foundation for how I think about autism.
I thought autism was Aiden’s problem and I was going to learn the rules of fixing him. Instead, what I learned was that the problem was with me. I would need to question every assumption that society had taught me about my son. Me — I needed to challenge everything I had ever learned about autism.
We need to challenge how autism is defined — as a set of behaviors and deficits – because this description leads us inexorably to “fixing” autistic people. Autism is a way that the brain takes in, processes, and responds to information. This way of processing results in variations in the way the world is experienced and the ways that learning, communication, and movement occur. Autistic people develop skills on a different timetable or in a different order than expected.
But autism also comes with a set of strengths – a deep passion for interests, the ability to recognize visual, musical, social, or emotional patterns, and a strong individuality. When we ignore autistic strengths, we ourselves become stuck on fixing autistic people, rather than building on their natural talents.
We need to challenge how autism is portrayed in the media. Using fear, sadness, and pity to generate donations devalues autistic lives and terrorizes parents. Imagine never seeing a positive image of yourself or your child in the media. Imagine always being seen as an object of pity. The negative portrayal of autistic people and their families sends the message that their lives are joyless, worthless, and powerless. Instead of this unrelenting image of fear, we need to hear more stories of real autistic people’s lives – their joys, successes, and what helps them thrive.
We need to question the perception that disabled lives are pitiable. Our history and culture defines “normal” and anyone different is seen as less than. We are programmed to see those who are not white, male, and heterosexual, with certain physical and neurological characteristics, as not normal. This view explains why white skin is seen as the default and black skin is seen as different. It explains why women in business are told to think like men, and why any display of emotion is labeled a sign of weakness. It sends a message that anything different from “normal” is not good enough.
This is why I cried when I first learned that my son would have disabilities and be perceived as “different.” In that moment, my child’s potential was erased by my unconscious biases. Unknowingly, I had bought into the idea that anything other than a certain set of physical and neurological characteristics is a life of less than, a pitiful existence. What did that say about how I thought of as myself as a woman? What did that say about my relationships with black people? Gay people? About people with other disabilities? What did that say about my relationship to my own child? We need to challenge the belief that difference is less than. Our ideas about what is “normal” need to change.
We need to examine our response to autism. When we start with the incorrect premise that autistic people don’t understand or misbehave, we end up with behavioral programs directed at training them to act in “normal” ways. By recognizing that they already communicate and understand, we can identify the obstacles that make it difficult for them. We can move from trying to fix the person to giving them the supports they need. These supports include sensory-friendly environments, devices to assist communication, acceptance of moving around and stimming, and methods of learning that come most naturally to them. Creating supports like this are like building ramps for autistic people, instead of forcing them to climb stairs that exhaust and exclude them.
The Grand Lesson
After my child was diagnosed with autism, the grand lesson finally got through to me. Life isn’t about finding sets of rules. It’s about seeing my own child, other people’s children, and other adults behaving in ways that I didn’t expect, and then challenging my own prejudices and reactions. It’s about learning to broaden our narrow perceptions of normal, thinking carefully about what we mean when we say “different,” and how we define happiness.
Thursday, June 13, 2013
Summer Reading Mid-June 2013
As I was thinking about what to write about books I am sharing with my son during the summer months, a major disaster has happened in our city. We are safe, but Colorado Springs is near more wildfires like last year. Last year it was the west side having to evacuate because of the Waldo Canyon Fire. This year it is the north side that is having to evacuate because of the Black Forest Fire. Already the Black Forest fire is worse than the Waldo Canyon Fire in terms of number of homes destroyed. This evening an announcement was made that two people have perished in the fire. They were trying to flee, but the fire was moving too fast.
Times like these make me pause and think about the small day to day life. Am I really making memories for my son? Memories that he will cherish for a lifetime? Memories that he will look back and say, "Wow! Mom and Dad loved me so much that I knew it in the way we lived each day together." I strive to create memories that he will remember and cherish forever. I hope and pray that he knows how much we love him.
A few of the simple day to day things include cooking together. My son has a soy allergy so a lot of convenience foods are out of the question. He is five years old and he likes kid-type foods. One of those things is graham crackers. I found a recipe for homemade graham crackers online. You can find it at www.weelicious.com and search for homemade graham crackers. I will put a link here.
During cooking activities, he helps get the ingredients out. I show him how to measure dry ingredients, liquid ingredients and show how to mix it all together. The best part of all is getting the dough out of the bowl and shaping it into a disk then rolling it out and cutting the crackers with cookie cutters for any shape you like.
It is a fun memory. We also went to the farmer's market today. He was able to get his arm painted there. Usually a bath is part of the nightly routine, but to keep the artwork on until tomorrow I gave him a sponge bath tonight. He wants to show his dolphin on his arm to his therapists tomorrow.
Here is a list of several books I am reading to him. There are two sets of books that he is starting to read. I will put that at the end of the list. Again, some are our own collection and some are from local libraries. Enjoy!
These are all from the base library.
1.4 Pups and a Worm by Eric Seltzer
2. Animal Playtime Kittens by Cathy Drinkwater Better illustrations by Steve Caldwell
3. It's Not Fair! by Anita Harper illunstrated by Mary McQuillan
4. Panda Bear, Panda Bear, What Do You See? by Bill Martin Jr. illustrations by Eric Carle
5. Rabbit's Birthday Kite by Maryann Macdonald illustrated by Lynn Munsinger
6. Tumford's Rude Noises by Nancy Tillman
These are from our own collection.
Caillou My Storytime Box Set of 6 books
Adventures in Reading Disney Winnie the Pooh Leveled Stories for Beginning Readers Set of 10 books
Times like these make me pause and think about the small day to day life. Am I really making memories for my son? Memories that he will cherish for a lifetime? Memories that he will look back and say, "Wow! Mom and Dad loved me so much that I knew it in the way we lived each day together." I strive to create memories that he will remember and cherish forever. I hope and pray that he knows how much we love him.
A few of the simple day to day things include cooking together. My son has a soy allergy so a lot of convenience foods are out of the question. He is five years old and he likes kid-type foods. One of those things is graham crackers. I found a recipe for homemade graham crackers online. You can find it at www.weelicious.com and search for homemade graham crackers. I will put a link here.
During cooking activities, he helps get the ingredients out. I show him how to measure dry ingredients, liquid ingredients and show how to mix it all together. The best part of all is getting the dough out of the bowl and shaping it into a disk then rolling it out and cutting the crackers with cookie cutters for any shape you like.
It is a fun memory. We also went to the farmer's market today. He was able to get his arm painted there. Usually a bath is part of the nightly routine, but to keep the artwork on until tomorrow I gave him a sponge bath tonight. He wants to show his dolphin on his arm to his therapists tomorrow.
Here is a list of several books I am reading to him. There are two sets of books that he is starting to read. I will put that at the end of the list. Again, some are our own collection and some are from local libraries. Enjoy!
These are all from the base library.
1.4 Pups and a Worm by Eric Seltzer
2. Animal Playtime Kittens by Cathy Drinkwater Better illustrations by Steve Caldwell
3. It's Not Fair! by Anita Harper illunstrated by Mary McQuillan
4. Panda Bear, Panda Bear, What Do You See? by Bill Martin Jr. illustrations by Eric Carle
5. Rabbit's Birthday Kite by Maryann Macdonald illustrated by Lynn Munsinger
6. Tumford's Rude Noises by Nancy Tillman
These are from our own collection.
Caillou My Storytime Box Set of 6 books
Adventures in Reading Disney Winnie the Pooh Leveled Stories for Beginning Readers Set of 10 books
Tuesday, June 4, 2013
Summer Reading 2013
Summer Reading is here for 2013. I always read to my son. Mostly I find the reading happens during the bedtime routine. I wanted to share the 10 books I read to him tonight. Most of these books I found at the public library, a few I found at the base library and one is our own personal book.
Here are the books I shared with my son tonight.
I found these at the base library. My husband is retired air force. If you have the privilege of using a military library, please use it. Recent budget cuts have even effected the libraries at military installations.
Arthur's Reading Race by Marc Brown
Flap Your Wings by P.D. Eastman
The Bike Lesson Another Adventure of the Berenstain Bears by Stan and Jan Berenstain
I found these books at the public library. Especially during the summer books, go to your local library and check out books. You know what interests your child. Build on those interests.
Arabella Miller's Tiny Caterpillar by Clare Jarrett
Henry Builds a Cabin by D.B. Johnson
Chester the Brave by Audrey Penn illustrated by Barbara L. Gibson
Amelia Makes a Movie by David Milgrim
The Fantastic Mr. Wani by Kanako Usui
I Want Two Birthdays! by Tony Ross
This one is in our own collection. We have a lot of books in my son's room. Books are always part of special holidays. This book in particular has a very special message.
Have You Filled a Bucket Today? A Guide to Daily Happiness for Kids by Carol McCloud illustrated by David Messing
I haven't decided how often I will update these posts about summer reading. We usually go to a library once a week, sometimes every other week. Suppose I will update as we get new library books. I will share what I am reading with my little guy and maybe it will inspire another parent to read more to their child or look for a particular book to share with their child. Happy reading! :)
Here are the books I shared with my son tonight.
I found these at the base library. My husband is retired air force. If you have the privilege of using a military library, please use it. Recent budget cuts have even effected the libraries at military installations.
Arthur's Reading Race by Marc Brown
Flap Your Wings by P.D. Eastman
The Bike Lesson Another Adventure of the Berenstain Bears by Stan and Jan Berenstain
I found these books at the public library. Especially during the summer books, go to your local library and check out books. You know what interests your child. Build on those interests.
Arabella Miller's Tiny Caterpillar by Clare Jarrett
Henry Builds a Cabin by D.B. Johnson
Chester the Brave by Audrey Penn illustrated by Barbara L. Gibson
Amelia Makes a Movie by David Milgrim
The Fantastic Mr. Wani by Kanako Usui
I Want Two Birthdays! by Tony Ross
This one is in our own collection. We have a lot of books in my son's room. Books are always part of special holidays. This book in particular has a very special message.
Have You Filled a Bucket Today? A Guide to Daily Happiness for Kids by Carol McCloud illustrated by David Messing
I haven't decided how often I will update these posts about summer reading. We usually go to a library once a week, sometimes every other week. Suppose I will update as we get new library books. I will share what I am reading with my little guy and maybe it will inspire another parent to read more to their child or look for a particular book to share with their child. Happy reading! :)
Thursday, May 23, 2013
The Things My Boy Says
Summer has just begun. Already have swimming lessons scheduled to start in June. Finishing preschool is bittersweet, however, we are all looking forward to adventures that will come in kindergarten.
Something that we are still learning is that there are times when Aiden hears things, he takes them literally. He was with me at the commissary earlier this week. We used the self-checkout. After I had paid for the items, the computer said, "please remove all bagged items." Aiden was upset. He said, "Oh, mommy! You can't take the milk. You didn't bag it!"
Also earlier this week I got a dum-dum sucker for Aiden. I left it on the kitchen counter and told him that I have a special treat for him with his name all over it. He went to the kitchen and looked all over the wrapper of the sucker. He said, "Hey! This doesn't have my name on it!"
They are just a couple of the things that we are all learning. My son was diagnosed on the autism spectrum. Some days are awesome and some days really test my patience. Perhaps on another day I will post about the not so awesome days. Right now I want to focus on these cute days and help him understand figures of speech and how not everything is literal. It is an on-going process.
Something that we are still learning is that there are times when Aiden hears things, he takes them literally. He was with me at the commissary earlier this week. We used the self-checkout. After I had paid for the items, the computer said, "please remove all bagged items." Aiden was upset. He said, "Oh, mommy! You can't take the milk. You didn't bag it!"
Also earlier this week I got a dum-dum sucker for Aiden. I left it on the kitchen counter and told him that I have a special treat for him with his name all over it. He went to the kitchen and looked all over the wrapper of the sucker. He said, "Hey! This doesn't have my name on it!"
They are just a couple of the things that we are all learning. My son was diagnosed on the autism spectrum. Some days are awesome and some days really test my patience. Perhaps on another day I will post about the not so awesome days. Right now I want to focus on these cute days and help him understand figures of speech and how not everything is literal. It is an on-going process.
Saturday, May 4, 2013
What Disability Do I Have, Mommy?
Well, I was hoping I would have more time before my son asked this question. However, today while he was having a snack he asked the question, "What disability do I have, Mommy?"
It hit me like a ton of bricks. Like most parents, I look at my son and see all the potential he has. Memories flash in my mind of when he was a baby. I have huge dreams for him. Even though I have come to acceptance that he has austim spectrum disorder, actually telling him that he has this is a very difficult thing to do.
The conversation started with handicapped parking spots. He points out the signs when we go places. He asks why they are blue, why the signs have a picture of a wheelchair. I explained how back in the 1990s a law was passed called the Americans with Disabilities Act. When that law was passed a lot of changes were made to public places to make it easier for people who are in wheelchairs and have other disabilities to access buildings and places more easily.
He then asks me the question, "What disability do I have, Mom?" I could have explained right there all about autism spectrum disorder and attention deficit disorder. Instead, I returned his question with a question. "Who told you that you have a disability?" I felt defensive. How dare someone tell my son that he has a disability. Whoever this person is, they were going to get an earful from me, the mamma bear. His response was, "No one, Mommy." Then he continued to eat his snack and did not bring it up again.
Eventually it will come up again. Mercy, he goes to four different therapies during the week. He asks me why I take him to speech, OT and PT. My response is to help him have a happier life. He asks me why Mr. Dan comes to the house. Mr. Dan is the ABA therapist. I tell him to also help him have a happier life.
My son is only five. Very smart kid. Recently, the weather has become more like spirng and we open the windows to let in some fresh air. He was asking my husband (Daddy) to please close the windows because he has allergies and the tree pollen gets in the house and he sneezes and his allergies hurt. He knows he is different, but can't quite explain why. I want to have more time to explain it to him. Explain it to him in a way that does not use his diagnoses as any reason for him to not try hard in life. I want to protect him, at the same time, I want to empower him. Mostly, I just want to love him and have him know that he is loved.
I will be better at getting the conversation rolling. All this time I have been concerned about his development and how therapies are progressing. While I also have another thing to think about, what children's stories to find that will help answer his question, "What disability do I have, Mommy?" I need to prepare myself for that, for it will be much better if the information comes from Mommy and Daddy rather than someone else. He is a sensitive child, I am concerned what his response will be when he is told that, yes, he does have a disability.
I wish it was something as easy as looking in the mirror with him and saying, yes son you have brown hair and brown eyes. Your eyes are a lot like mine. However, I get so emotional just thinking about how to tell him. Mostly, I will focus on loving him, loving him through easy days and not so easy days. Loving him as only I can, because I am his mother.
It hit me like a ton of bricks. Like most parents, I look at my son and see all the potential he has. Memories flash in my mind of when he was a baby. I have huge dreams for him. Even though I have come to acceptance that he has austim spectrum disorder, actually telling him that he has this is a very difficult thing to do.
The conversation started with handicapped parking spots. He points out the signs when we go places. He asks why they are blue, why the signs have a picture of a wheelchair. I explained how back in the 1990s a law was passed called the Americans with Disabilities Act. When that law was passed a lot of changes were made to public places to make it easier for people who are in wheelchairs and have other disabilities to access buildings and places more easily.
He then asks me the question, "What disability do I have, Mom?" I could have explained right there all about autism spectrum disorder and attention deficit disorder. Instead, I returned his question with a question. "Who told you that you have a disability?" I felt defensive. How dare someone tell my son that he has a disability. Whoever this person is, they were going to get an earful from me, the mamma bear. His response was, "No one, Mommy." Then he continued to eat his snack and did not bring it up again.
Eventually it will come up again. Mercy, he goes to four different therapies during the week. He asks me why I take him to speech, OT and PT. My response is to help him have a happier life. He asks me why Mr. Dan comes to the house. Mr. Dan is the ABA therapist. I tell him to also help him have a happier life.
My son is only five. Very smart kid. Recently, the weather has become more like spirng and we open the windows to let in some fresh air. He was asking my husband (Daddy) to please close the windows because he has allergies and the tree pollen gets in the house and he sneezes and his allergies hurt. He knows he is different, but can't quite explain why. I want to have more time to explain it to him. Explain it to him in a way that does not use his diagnoses as any reason for him to not try hard in life. I want to protect him, at the same time, I want to empower him. Mostly, I just want to love him and have him know that he is loved.
I will be better at getting the conversation rolling. All this time I have been concerned about his development and how therapies are progressing. While I also have another thing to think about, what children's stories to find that will help answer his question, "What disability do I have, Mommy?" I need to prepare myself for that, for it will be much better if the information comes from Mommy and Daddy rather than someone else. He is a sensitive child, I am concerned what his response will be when he is told that, yes, he does have a disability.
I wish it was something as easy as looking in the mirror with him and saying, yes son you have brown hair and brown eyes. Your eyes are a lot like mine. However, I get so emotional just thinking about how to tell him. Mostly, I will focus on loving him, loving him through easy days and not so easy days. Loving him as only I can, because I am his mother.
Sunday, April 28, 2013
The Autism and Allergy Overlap
I found this article and want to share it on here. It is written by Heather Fraser. She is the author of The Peanut Allergy Epidemic: what’s causing it and how to stop it (NY, Skyhorse, 2011). She is a Toronto-based writer and holistic health practitioner. Her son, now 18, was diagnosed with peanut allergy in 1995. Find out more at heatherfraser.org and peanutallergyepidemic.com.
ASD and food allergy rates have risen dramatically—and they often go hand in hand…
The food allergy and autism communities generally seen as separate groups have more in common than they may realize. One has only to look at the meteoric rise of both epidemics in the last 20 years to wonder if they are connected. In fact, I contend that they are the same story with the same causes and overlapping symptoms but with different outcomes. It is as though one overwhelmed child turned left while the other turned right.
Children with life threatening food allergies often have a “mixed bag” of health concerns that can include ADHD, environmental sensitivities and gut inflammation. Typically, parents of these children pay such close attention to the food anaphylaxis that these “lesser” issues are often dismissed or medicated away. And yet, if we view this mixed bag as a collection of meaningful symptoms, a very different picture emerges. This picture mirrors that of many children on the spectrum.
In “The Function of Allergy: an immunological defense against toxins” (1991), Margie Profet confirms that any mammal overwhelmed and unable to detoxify will defend itself with allergy. This evolved defense is designed to expel the toxin(s) as fast as possible by sneezing, vomiting, itching or to prevent it from circulating by a drop in blood pressure.
Toxic exposures—any combination from air, food, water, drugs, pathogens, or vaccines—that precipitate the allergies can also result in a host of other health issues. The so-called “neuro-typical” (NT) kids with severe food allergies are not NT at all if we ask additional questions about fine or gross motor skills, unusual “gifts”, attention deficit, rage, sensory processing issues, hyperactivity and more.
By illuminating the ground shared by the food allergy kids and children on the spectrum, a broader collective awareness may emerge. This awareness will bring greater pressure to bear on addressing causes and forcing change.
The “A” words
Like the word “autism”, allergy and anaphylaxis were coined early in the 20th century. These last two were created to describe reactions to sera administered for the first time in history using the hypodermic syringe. When children began to fall violently ill following the use of this new technology, doctors scrambled to understand why. Pediatrician Clemens von Pirquet in 1906 saw the symptoms as an “altered reactivity” or allergy. Anaphylaxis “against protection” was coined by Charles Richet around 1913 to describe the condition he created in animals during immunization experiments.
Autism was coined by a Swiss psychiatrist in 1912 and Asperger’s after the work of Hans Asperger in the 1930s. Leo Kanner in the 1940s provided a foundation for understanding the environmental causes of autism.
Food allergies and autism in children increased slowly until about 1990 at which time their prevalence abruptly accelerated.
The first wave of affected children
It seemed to happen almost overnight about 20 years ago. Something changed suddenly at the same time in many Western countries to make scores of children terribly unwell:
■Food anaphylaxis: severe food allergy increased abruptly in children, but just in certain Western countries including Australia (ACT), the US, Canada, and the UK. School teachers provided eye witness accounts of the sudden surge of severely allergic children who arrived for kindergarten in the early 90s. The timing is confirmed by hospital ER records. UK cohort studies indicated that peanut allergy in preschoolers had doubled in just four years through the early 1990s, from about 1% to over 3%.
■Autism: in the early 1990s, increasing reports of autism alerted the US Centers for Disease Control and Prevention (CDC). One startling report of a “cluster” of autism in Brick Township, New Jersey drew the attention of the CDC in 1997.[i] Children born in the late 1980s and early 90s were most affected. A steep increase in autism was noted at this time also in the UK, Canada, and Australia.
Continued rise
This was the beginning of what are now epidemics of life threatening food allergies and autism. In the US, one in 13 children (8%) have food allergies with one in 40 (2.5%, 1.8 million) being life threatening. Childhood peanut/tree nut allergies tripled between 1997 and 2008 from .6% to 2.1%.[i] There has been a 265% rise in food allergy hospitalization among children (CDC).
Autism has spiked 1,500% in the last 20 years. One in 88 children is on the spectrum: 825,000 in the US; 89,000 in Canada; 131,000 in the UK.
Food/substance triggers
Many severely food allergic children have atopy—allergies causing eczema, asthma and behavior issues. Food allergies are the main causes of ADHD according to a 2001 study in the Lancet.[iii] The opiate effect of dairy and wheat proteins on some children is well documented. Unrecognized allergies to chemicals, molds and more can also cause behavioral changes.
It is not known how many children on the spectrum have severe allergy, but most avoid certain foods that make other symptoms worse. The worst of these according to Kenneth Bock, MD in Healing the New Childhood Epidemics (2007) are dairy, chocolate, yeast-growing foods, gluten and casein. Allergies and Autism (2010) by Michael Dochniak tells the story of a boy with multiple allergies who regressed after an anaphylactic reaction to latex. The role of allergy in autism can be profound and individual.
Defensiveness
Allergy and anaphylaxis function to defend the body against acute toxicity. The body may risk death to defend itself against perceived certain death.
Children on the spectrum can exhibit defensiveness. Cari Neal in “Tactile Defensiveness and Patterns of Social Behavior in Autism” (1997)[iv] explains that social withdrawal functions to limit tactile stimulation. Temple Grandin, quoted by Neal, confirms that for her, withdrawal is a defense from a “tidal wave of stimulation.”
Gender and age of onset
In 1944, Hans Asperger believed that girls were unaffected by the syndrome he described although he later revised his conclusion. The gender gap is as high as 10:1 for Asperger’s, and 4:1 for autism. In 1964, Bernard Rimland observed that boys tended to be more vulnerable to “organic damage” than girls.
Studies on peanut allergic children reveal that twice as many boys have the condition than do girls.
Many parents see the 18 month mark or before the age of two as a point of change or regression for children on the autism spectrum.
The general age of onset for life threatening peanut allergy (the first reaction) has been declining: from 24 months of age for kids born between 1995 and 1997; 21 months for those born before 2000; and for those after 2000, it is now about 14 months of age.
GI tract damage – gut-brain axis
Since Charles Richet’s 1913 Nobel Prize winning research, allergists have defaulted to the idea that food allergy is caused by digestive failure, or a “leaky” gut. Or it was, until the explosion of food anaphylaxis in children starting around 1990. It seemed impossible that gut failure could occur on such a scale and so suddenly.
The gut is integral to the immune system and the brain. Also called the “second brain” because it is connected by millions of neurons to the central nervous system, the gut will react immediately when challenged by toxin or trauma:
In cases of extreme stress … the higher brain seems to protect the gut by sending signals to immunological mast cells in the plexus. The mast cells secrete histamine, prostaglandin and other agents that help produce inflammation. This is protective. By inflaming the gut, the brain is priming the [it] for surveillance.[v]
The bystander effect occurs when compounds in the body/gut at the time or moment of the extreme stress become targets for allergic sensitization.
And it goes without explanation that children on the spectrum struggle greatly with gut inflammation. What could have the power to provoke this so early in the lives of hundreds of thousands of children?
Causes
Many following allergy and autism debates believe that both epidemics are man-made. And the medical community appears ready at last to consider this within the “hygiene hypothesis”:
The leading theory is about hygiene – with less infection thanks to city living, smaller families, vaccines, sanitation, antibiotics, etc., the immune system is less ‘busy’ with germs and may become more prone to attack harmless food proteins.
~ Dr. Scott Sicherer, pediatrics professor at Mount Sinai School of Medicine, New York (Sept. 12, 2012)[vi]
The hygiene hypothesis suggests that vaccination, antibiotics and bug-killing products have unhinged the immune systems of children. Humans have co-evolved with microbes and gut parasites/worms, and without them are vulnerable to inflammatory disorders. Our bug-free, vaccine obsessed, pesticide loving Western existence appears to have doomed us to allergy and autism.
Yes, the hygiene hypothesis has entered the discussion on causes of autism. A 2007 Medical Hypotheses article by K. Becker suggests that immune pathways affected by western hygienic practices may impact brain structure or function contributing to autism. Becker mentions “immunization” in this light but in confessing its “controversial” nature does not pursue it.
Clarifying the matter is historical fact. The abrupt rise of allergy and autism around 1990 coincided with reforms to the pediatric vaccination schedules of many Western countries.
In 1986, the US National Childhood Vaccine Injury Act in essence de-regulated vaccination: no one could sue a vaccine maker without government approval. Largely relieved then of liability, manufacturers moved to meet government demand addressing new “diseases of priority” established by the US Institute of Medicine.
Increases to the vaccine schedule in many Western countries began in 1987 with the Haemophilus influenza type B (Hib) vaccine. By 1991, doctors did not hesitate to give this new conjugate vaccine to two-month-old children simultaneously with vaccines for diphtheria, tetanus, pertussis, and polio. This move was unprecedented. In that year, more than 17 million doses of Hib vaccine were sold in the US alone. In 1992, additional doses of combination vaccines were included in the schedule. Hib was a revenue-generating “blockbuster product” according to a 1998 WHO publication.
At the same time, coverage rates for vaccination soared. Between 1993 and 1995, the Clinton administration’s Childhood Immunization Initiative provided federal funds aimed at 90% coverage of all infants. Vaccination became a requirement before entry into many preschools and daycare centers. By 1997-98, childhood vaccination rates reached record highs. Canada, the UK, and AU followed the American example.
In 1983, US children received 22 doses of vaccines (combined or single) for seven diseases (two months to age six). Today in the US, children receive up to 48 doses of vaccines for 14 diseases starting at birth to age six.
Unsustainable practices: Hib
The Hib, within an intense schedule that includes five-vaccines-at-once, has been the last straw in my opinion, tipping scores of children into peanut allergy.
Where the DPT-IPV with Hib is used en masse, peanut allergy follows: first in Western countries including the UK, the US, Canada, and ACT Australia, then after 2001 following its use with high coverage rates in Tasmania, Hong Kong, Singapore and most recently India.[vii]
Hib plays a role in autism according to Brian Richmand in “Hypothesis, Conjugate vaccines may predispose children to autism spectrum disorders”. Richmand suggests that the five-in-one with Hib has interfered with nerve myelin in the brain:
This period of hypo-responsiveness to carbohydrate antigens coincides with the intense myelination process in infants and young children, and conjugate vaccines may have disrupted evolutionary forces that favored early brain development over the need to protect infants and young children from capsular bacteria. [viii]
Richmand further suggests that girls who received this vaccine carry antibodies that have the potential to damage nerve myelin and result in autism in their children.
Undeniable disaster … leads to disaster capitalism
In “Save the children (and make money)” published in The Wall Street Journal (2009), writer James Altucher noted the massive rise in the last two decades in peanut allergy, asthma and more among children. The kids are sick and getting sicker, Altucher observed. So, he thought an “Autoimmune Index” would be a good idea:
Such an index would consist of the best mix of stocks that have good lower multiples that will supply the arms in our ongoing war against autoimmune diseases.[ix]
Altucher lists the drugs created for these conditions, their manufacturers, the status of their stocks and their billion dollar profits. And then without slowing he offers possible causes for the pediatric epidemics:
The increase in autoimmune illnesses and allergies in children may be due to high exposure to antibiotics and vaccines at an early age…
Are the products causing the epidemics made by the same companies now making the remedies? It seems investors can make money at both ends of the epidemics.
This is disaster capitalism.
Moving forward
The century old pattern of increasing drug and vaccine consumption in Western countries has meant profit for some but devastation for many more. The autism community is aware of the conflicted interests that underpin this pattern and the autism epidemic. And parents of anaphylactic children are listening. The stories of autism and life threatening food allergy are the same, with shared causes and overlapping symptoms. The “mixed bag” kids with life threatening food allergy are a mirror that, as dark as it is, brings with it millions of families equally worried about the health of their children.
With a growing awareness of the ground these communities share, my hope isthat they will connect meaningfully to force change leading to prevention of these serious — and altogether avoidable — health issues.
--------------------------------------------------------------------------------
[i] M. Blaxill and D. Olmsted, Age of Autism (NY, Thomas Dunne, 2010).
[ii] Sicherer, et al., “US prevalence of self-reported peanut, tree nut and sesame allergy: 11-year follow-up,” JACI, Vol. 125, No. 6 (June, 2010): 1322-1326.
[iii] L. Pelsser, et al., “Effects of a restricted elimination diet on the behaviour of children with attention-deficit hyperactivity disorder (INCA study): a randomized controlled trial,” The Lancet, Vol. 377, (Feb. 2011): 494-503. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(10)62227-1/abstract
[iv] Cari Neal “Tactile Defensiveness and Patterns of Social Behavior in Autism,” (Illinois Wesleyan University, 1997). http://digitalcommons.iwu.edu/psych_honproj/66/
[v] R.M. King, professor, Northern Virginia Community College, Virginia http://www.psyking.net/id36.htm
[vi] http://www.foxnews.com/health/2012/09/12/peanut-allergies-seen-on-rise/#ixzz28eyzSyF7
[vii] H. Fraser, The Peanut Allergy Epidemic (NY, Skyhorse, 2011) pp. 124-126.
[viii] B. Richmand, “Hypothesis, Conjugate vaccines may predispose children to autism spectrum disorders,” Medical Hypotheses, Vol. 77, No. 6 (Dec., 2011): 940-7. http://www.ncbi.nlm.nih.gov/pubmed/21993250
[ix] James Altucher, “Save the children (and make money)” The Wall Street Journal (Mon. Aug. 10, 2009) http://online.wsj.com/article/SB124992390387319939.html
Heather Fraser is the author of The Peanut Allergy Epidemic: what’s causing it and how to stop it (NY, Skyhorse, 2011). She is a Toronto-based writer and holistic health practitioner. Her son, now 18, was diagnosed with peanut allergy in 1995. Find out more at heatherfraser.org and peanutallergyepidemic.com.
ASD and food allergy rates have risen dramatically—and they often go hand in hand…
The food allergy and autism communities generally seen as separate groups have more in common than they may realize. One has only to look at the meteoric rise of both epidemics in the last 20 years to wonder if they are connected. In fact, I contend that they are the same story with the same causes and overlapping symptoms but with different outcomes. It is as though one overwhelmed child turned left while the other turned right.
Children with life threatening food allergies often have a “mixed bag” of health concerns that can include ADHD, environmental sensitivities and gut inflammation. Typically, parents of these children pay such close attention to the food anaphylaxis that these “lesser” issues are often dismissed or medicated away. And yet, if we view this mixed bag as a collection of meaningful symptoms, a very different picture emerges. This picture mirrors that of many children on the spectrum.
In “The Function of Allergy: an immunological defense against toxins” (1991), Margie Profet confirms that any mammal overwhelmed and unable to detoxify will defend itself with allergy. This evolved defense is designed to expel the toxin(s) as fast as possible by sneezing, vomiting, itching or to prevent it from circulating by a drop in blood pressure.
Toxic exposures—any combination from air, food, water, drugs, pathogens, or vaccines—that precipitate the allergies can also result in a host of other health issues. The so-called “neuro-typical” (NT) kids with severe food allergies are not NT at all if we ask additional questions about fine or gross motor skills, unusual “gifts”, attention deficit, rage, sensory processing issues, hyperactivity and more.
By illuminating the ground shared by the food allergy kids and children on the spectrum, a broader collective awareness may emerge. This awareness will bring greater pressure to bear on addressing causes and forcing change.
The “A” words
Like the word “autism”, allergy and anaphylaxis were coined early in the 20th century. These last two were created to describe reactions to sera administered for the first time in history using the hypodermic syringe. When children began to fall violently ill following the use of this new technology, doctors scrambled to understand why. Pediatrician Clemens von Pirquet in 1906 saw the symptoms as an “altered reactivity” or allergy. Anaphylaxis “against protection” was coined by Charles Richet around 1913 to describe the condition he created in animals during immunization experiments.
Autism was coined by a Swiss psychiatrist in 1912 and Asperger’s after the work of Hans Asperger in the 1930s. Leo Kanner in the 1940s provided a foundation for understanding the environmental causes of autism.
Food allergies and autism in children increased slowly until about 1990 at which time their prevalence abruptly accelerated.
The first wave of affected children
It seemed to happen almost overnight about 20 years ago. Something changed suddenly at the same time in many Western countries to make scores of children terribly unwell:
■Food anaphylaxis: severe food allergy increased abruptly in children, but just in certain Western countries including Australia (ACT), the US, Canada, and the UK. School teachers provided eye witness accounts of the sudden surge of severely allergic children who arrived for kindergarten in the early 90s. The timing is confirmed by hospital ER records. UK cohort studies indicated that peanut allergy in preschoolers had doubled in just four years through the early 1990s, from about 1% to over 3%.
■Autism: in the early 1990s, increasing reports of autism alerted the US Centers for Disease Control and Prevention (CDC). One startling report of a “cluster” of autism in Brick Township, New Jersey drew the attention of the CDC in 1997.[i] Children born in the late 1980s and early 90s were most affected. A steep increase in autism was noted at this time also in the UK, Canada, and Australia.
Continued rise
This was the beginning of what are now epidemics of life threatening food allergies and autism. In the US, one in 13 children (8%) have food allergies with one in 40 (2.5%, 1.8 million) being life threatening. Childhood peanut/tree nut allergies tripled between 1997 and 2008 from .6% to 2.1%.[i] There has been a 265% rise in food allergy hospitalization among children (CDC).
Autism has spiked 1,500% in the last 20 years. One in 88 children is on the spectrum: 825,000 in the US; 89,000 in Canada; 131,000 in the UK.
Food/substance triggers
Many severely food allergic children have atopy—allergies causing eczema, asthma and behavior issues. Food allergies are the main causes of ADHD according to a 2001 study in the Lancet.[iii] The opiate effect of dairy and wheat proteins on some children is well documented. Unrecognized allergies to chemicals, molds and more can also cause behavioral changes.
It is not known how many children on the spectrum have severe allergy, but most avoid certain foods that make other symptoms worse. The worst of these according to Kenneth Bock, MD in Healing the New Childhood Epidemics (2007) are dairy, chocolate, yeast-growing foods, gluten and casein. Allergies and Autism (2010) by Michael Dochniak tells the story of a boy with multiple allergies who regressed after an anaphylactic reaction to latex. The role of allergy in autism can be profound and individual.
Defensiveness
Allergy and anaphylaxis function to defend the body against acute toxicity. The body may risk death to defend itself against perceived certain death.
Children on the spectrum can exhibit defensiveness. Cari Neal in “Tactile Defensiveness and Patterns of Social Behavior in Autism” (1997)[iv] explains that social withdrawal functions to limit tactile stimulation. Temple Grandin, quoted by Neal, confirms that for her, withdrawal is a defense from a “tidal wave of stimulation.”
Gender and age of onset
In 1944, Hans Asperger believed that girls were unaffected by the syndrome he described although he later revised his conclusion. The gender gap is as high as 10:1 for Asperger’s, and 4:1 for autism. In 1964, Bernard Rimland observed that boys tended to be more vulnerable to “organic damage” than girls.
Studies on peanut allergic children reveal that twice as many boys have the condition than do girls.
Many parents see the 18 month mark or before the age of two as a point of change or regression for children on the autism spectrum.
The general age of onset for life threatening peanut allergy (the first reaction) has been declining: from 24 months of age for kids born between 1995 and 1997; 21 months for those born before 2000; and for those after 2000, it is now about 14 months of age.
GI tract damage – gut-brain axis
Since Charles Richet’s 1913 Nobel Prize winning research, allergists have defaulted to the idea that food allergy is caused by digestive failure, or a “leaky” gut. Or it was, until the explosion of food anaphylaxis in children starting around 1990. It seemed impossible that gut failure could occur on such a scale and so suddenly.
The gut is integral to the immune system and the brain. Also called the “second brain” because it is connected by millions of neurons to the central nervous system, the gut will react immediately when challenged by toxin or trauma:
In cases of extreme stress … the higher brain seems to protect the gut by sending signals to immunological mast cells in the plexus. The mast cells secrete histamine, prostaglandin and other agents that help produce inflammation. This is protective. By inflaming the gut, the brain is priming the [it] for surveillance.[v]
The bystander effect occurs when compounds in the body/gut at the time or moment of the extreme stress become targets for allergic sensitization.
And it goes without explanation that children on the spectrum struggle greatly with gut inflammation. What could have the power to provoke this so early in the lives of hundreds of thousands of children?
Causes
Many following allergy and autism debates believe that both epidemics are man-made. And the medical community appears ready at last to consider this within the “hygiene hypothesis”:
The leading theory is about hygiene – with less infection thanks to city living, smaller families, vaccines, sanitation, antibiotics, etc., the immune system is less ‘busy’ with germs and may become more prone to attack harmless food proteins.
~ Dr. Scott Sicherer, pediatrics professor at Mount Sinai School of Medicine, New York (Sept. 12, 2012)[vi]
The hygiene hypothesis suggests that vaccination, antibiotics and bug-killing products have unhinged the immune systems of children. Humans have co-evolved with microbes and gut parasites/worms, and without them are vulnerable to inflammatory disorders. Our bug-free, vaccine obsessed, pesticide loving Western existence appears to have doomed us to allergy and autism.
Yes, the hygiene hypothesis has entered the discussion on causes of autism. A 2007 Medical Hypotheses article by K. Becker suggests that immune pathways affected by western hygienic practices may impact brain structure or function contributing to autism. Becker mentions “immunization” in this light but in confessing its “controversial” nature does not pursue it.
Clarifying the matter is historical fact. The abrupt rise of allergy and autism around 1990 coincided with reforms to the pediatric vaccination schedules of many Western countries.
In 1986, the US National Childhood Vaccine Injury Act in essence de-regulated vaccination: no one could sue a vaccine maker without government approval. Largely relieved then of liability, manufacturers moved to meet government demand addressing new “diseases of priority” established by the US Institute of Medicine.
Increases to the vaccine schedule in many Western countries began in 1987 with the Haemophilus influenza type B (Hib) vaccine. By 1991, doctors did not hesitate to give this new conjugate vaccine to two-month-old children simultaneously with vaccines for diphtheria, tetanus, pertussis, and polio. This move was unprecedented. In that year, more than 17 million doses of Hib vaccine were sold in the US alone. In 1992, additional doses of combination vaccines were included in the schedule. Hib was a revenue-generating “blockbuster product” according to a 1998 WHO publication.
At the same time, coverage rates for vaccination soared. Between 1993 and 1995, the Clinton administration’s Childhood Immunization Initiative provided federal funds aimed at 90% coverage of all infants. Vaccination became a requirement before entry into many preschools and daycare centers. By 1997-98, childhood vaccination rates reached record highs. Canada, the UK, and AU followed the American example.
In 1983, US children received 22 doses of vaccines (combined or single) for seven diseases (two months to age six). Today in the US, children receive up to 48 doses of vaccines for 14 diseases starting at birth to age six.
Unsustainable practices: Hib
The Hib, within an intense schedule that includes five-vaccines-at-once, has been the last straw in my opinion, tipping scores of children into peanut allergy.
Where the DPT-IPV with Hib is used en masse, peanut allergy follows: first in Western countries including the UK, the US, Canada, and ACT Australia, then after 2001 following its use with high coverage rates in Tasmania, Hong Kong, Singapore and most recently India.[vii]
Hib plays a role in autism according to Brian Richmand in “Hypothesis, Conjugate vaccines may predispose children to autism spectrum disorders”. Richmand suggests that the five-in-one with Hib has interfered with nerve myelin in the brain:
This period of hypo-responsiveness to carbohydrate antigens coincides with the intense myelination process in infants and young children, and conjugate vaccines may have disrupted evolutionary forces that favored early brain development over the need to protect infants and young children from capsular bacteria. [viii]
Richmand further suggests that girls who received this vaccine carry antibodies that have the potential to damage nerve myelin and result in autism in their children.
Undeniable disaster … leads to disaster capitalism
In “Save the children (and make money)” published in The Wall Street Journal (2009), writer James Altucher noted the massive rise in the last two decades in peanut allergy, asthma and more among children. The kids are sick and getting sicker, Altucher observed. So, he thought an “Autoimmune Index” would be a good idea:
Such an index would consist of the best mix of stocks that have good lower multiples that will supply the arms in our ongoing war against autoimmune diseases.[ix]
Altucher lists the drugs created for these conditions, their manufacturers, the status of their stocks and their billion dollar profits. And then without slowing he offers possible causes for the pediatric epidemics:
The increase in autoimmune illnesses and allergies in children may be due to high exposure to antibiotics and vaccines at an early age…
Are the products causing the epidemics made by the same companies now making the remedies? It seems investors can make money at both ends of the epidemics.
This is disaster capitalism.
Moving forward
The century old pattern of increasing drug and vaccine consumption in Western countries has meant profit for some but devastation for many more. The autism community is aware of the conflicted interests that underpin this pattern and the autism epidemic. And parents of anaphylactic children are listening. The stories of autism and life threatening food allergy are the same, with shared causes and overlapping symptoms. The “mixed bag” kids with life threatening food allergy are a mirror that, as dark as it is, brings with it millions of families equally worried about the health of their children.
With a growing awareness of the ground these communities share, my hope isthat they will connect meaningfully to force change leading to prevention of these serious — and altogether avoidable — health issues.
--------------------------------------------------------------------------------
[i] M. Blaxill and D. Olmsted, Age of Autism (NY, Thomas Dunne, 2010).
[ii] Sicherer, et al., “US prevalence of self-reported peanut, tree nut and sesame allergy: 11-year follow-up,” JACI, Vol. 125, No. 6 (June, 2010): 1322-1326.
[iii] L. Pelsser, et al., “Effects of a restricted elimination diet on the behaviour of children with attention-deficit hyperactivity disorder (INCA study): a randomized controlled trial,” The Lancet, Vol. 377, (Feb. 2011): 494-503. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(10)62227-1/abstract
[iv] Cari Neal “Tactile Defensiveness and Patterns of Social Behavior in Autism,” (Illinois Wesleyan University, 1997). http://digitalcommons.iwu.edu/psych_honproj/66/
[v] R.M. King, professor, Northern Virginia Community College, Virginia http://www.psyking.net/id36.htm
[vi] http://www.foxnews.com/health/2012/09/12/peanut-allergies-seen-on-rise/#ixzz28eyzSyF7
[vii] H. Fraser, The Peanut Allergy Epidemic (NY, Skyhorse, 2011) pp. 124-126.
[viii] B. Richmand, “Hypothesis, Conjugate vaccines may predispose children to autism spectrum disorders,” Medical Hypotheses, Vol. 77, No. 6 (Dec., 2011): 940-7. http://www.ncbi.nlm.nih.gov/pubmed/21993250
[ix] James Altucher, “Save the children (and make money)” The Wall Street Journal (Mon. Aug. 10, 2009) http://online.wsj.com/article/SB124992390387319939.html
Heather Fraser is the author of The Peanut Allergy Epidemic: what’s causing it and how to stop it (NY, Skyhorse, 2011). She is a Toronto-based writer and holistic health practitioner. Her son, now 18, was diagnosed with peanut allergy in 1995. Find out more at heatherfraser.org and peanutallergyepidemic.com.
Living the Soy Free Life
My son is allergic to soy. We are on the journey of living the soy free life. When shopping we mainly buy foods in the produce section, milks and beef or chicken. Breads and bakery items are difficult to find without soy. I have been making baked goods from scratch since realizing my son has the soy allergy. I have found several things in grocery stores that are soy free. However, food companies change formulas from time to time so ALWAYS read the ingredient list. When reading the ingredient list it is also important to realize that the word "Soy" doesn't have to be there. It may be listed as MSG, natural flavorings, texturized vegetable protein, to name a few.
To help some others here are some items that I have found that are soy free:
Frito Lay's Sun Chips Newman's Own Chocolate Alphabet cookies Snyder's Sourdough Pretzels Amy's Organic soups (check the label, some do have soy) Cape Cod Potato chips Good Season's Italian Vinaigrette with Extra Virgin Olive Oil dressing RUFFLES chips(although check the label PLEASE) does not contain soy as of now. Also peter pan peanut butter does not as of now.
French baguette bread is soy free. It comes in long sticks of bread so can freeze it. You can get it at wal mart in the bakery section.
SNACKS THAT GENERALLY DON'T CONTAIN SOY(but do check the label) - Corn or rice Chex - Dried fruit such as raisins or prunes - Certain brands of Baby cookies - Cheerios - some brands of chocolate milk mix syrup - Jello - Gummy bears and similar candy
Some things that are soy free are Fritos (original). Boboli pizza crust. (good for making pizza since it is the only soy free pizza crust) Horizon chocolate milk (it uses actual cocoa and sugar, most others have soya lecithin) Fresh fruits are good to eat as well. Most packaged food has soy lurking somewhere. I would recommend making food fresh to avoid most problems. Also consider investing in a bread machine. (so you can make soy free bread.)
In a way your child's allergy to soy will make them a healthier adult since they won't be exposed to soy and other harmful substances contained in so many foods that people eat when they consume prepackaged food. Be very weary of anything listing vegetable oil but not specifying the type. Soy is the most common and cheapest.
Some Wasa crackers are soy free. Walmart and Kroger's carry them. Try Newman's own Alphabet Cookies & Hain Animal Cookies Carr's table water crackers are soy free!
Just about EVERYTHING has soy. I would also recommend avoiding ANYTHING that contains CANOLA oil . In my research, I have discovered that Canola shares properties of Soy. Also, when you see VEGETABLE OIL, know that it is ALWAYS soy. It is very difficult to survive with this allergy especially when one lives in a high paced environment. Stick with High protein foods from scratch and avoid pre-packaged snacks and all deserts. Most ice cream, except for Breyer's vanilla, is full of soy. Lay's Plain Potato chips are now made with all sunflower oil. FYI: as a precaution, I also rinse out my canned vegetables just to be safe. Good Luck out there!!
I know that Macaroni Grill has quite a few things that are soy-free, and several of Panera Bread's items don't have soy, either. You always have to check, though!! Those are the two places I know of. Hope that can help!
Kraft macaroni and cheese is not soy free. Neither is their BBQ sauce. They inconspicuously label it "natural flavors". When I emailed them to ask if there was soy, the response I received was that they follow all FDA guidelines. What a dishonest company that won't even disclose if there is soy in their products to someone who has told them they have a soy allergy. My advice is to avoid Kraft products if you have a soy allergy.
Most breads have soy and dairy - except for the artisan breads that are usually wheat, water and yeast.
Avoid Chocolate because of the soy lecithin - which is in everything processed. Most candy, and even TEA can have soy lecithin in it.
The weirdest thing I've found is that Mountain Dew and Gatorade have soy in them. Mountain Dew has Brominated Vegetable Oil - which is soy oil, and Gatorade has either that or soy lecithin...quite aggravating.
The other thing to watch out for is Natural Flavorings, which sometimes means soy derived additives.
For breadcrumbs I have discovered Cream of Wheat works well, I coat fish and Chicken in it and use it in meatloaf. Any brand of Organic cracker/cookies I have found are soy free, these are life savers. He also likes "enjoy life" brand cookies and granola bars. Generic brands tend to have soy, good luck
To help some others here are some items that I have found that are soy free:
Frito Lay's Sun Chips Newman's Own Chocolate Alphabet cookies Snyder's Sourdough Pretzels Amy's Organic soups (check the label, some do have soy) Cape Cod Potato chips Good Season's Italian Vinaigrette with Extra Virgin Olive Oil dressing RUFFLES chips(although check the label PLEASE) does not contain soy as of now. Also peter pan peanut butter does not as of now.
French baguette bread is soy free. It comes in long sticks of bread so can freeze it. You can get it at wal mart in the bakery section.
SNACKS THAT GENERALLY DON'T CONTAIN SOY(but do check the label) - Corn or rice Chex - Dried fruit such as raisins or prunes - Certain brands of Baby cookies - Cheerios - some brands of chocolate milk mix syrup - Jello - Gummy bears and similar candy
Some things that are soy free are Fritos (original). Boboli pizza crust. (good for making pizza since it is the only soy free pizza crust) Horizon chocolate milk (it uses actual cocoa and sugar, most others have soya lecithin) Fresh fruits are good to eat as well. Most packaged food has soy lurking somewhere. I would recommend making food fresh to avoid most problems. Also consider investing in a bread machine. (so you can make soy free bread.)
In a way your child's allergy to soy will make them a healthier adult since they won't be exposed to soy and other harmful substances contained in so many foods that people eat when they consume prepackaged food. Be very weary of anything listing vegetable oil but not specifying the type. Soy is the most common and cheapest.
Some Wasa crackers are soy free. Walmart and Kroger's carry them. Try Newman's own Alphabet Cookies & Hain Animal Cookies Carr's table water crackers are soy free!
Just about EVERYTHING has soy. I would also recommend avoiding ANYTHING that contains CANOLA oil . In my research, I have discovered that Canola shares properties of Soy. Also, when you see VEGETABLE OIL, know that it is ALWAYS soy. It is very difficult to survive with this allergy especially when one lives in a high paced environment. Stick with High protein foods from scratch and avoid pre-packaged snacks and all deserts. Most ice cream, except for Breyer's vanilla, is full of soy. Lay's Plain Potato chips are now made with all sunflower oil. FYI: as a precaution, I also rinse out my canned vegetables just to be safe. Good Luck out there!!
I know that Macaroni Grill has quite a few things that are soy-free, and several of Panera Bread's items don't have soy, either. You always have to check, though!! Those are the two places I know of. Hope that can help!
Kraft macaroni and cheese is not soy free. Neither is their BBQ sauce. They inconspicuously label it "natural flavors". When I emailed them to ask if there was soy, the response I received was that they follow all FDA guidelines. What a dishonest company that won't even disclose if there is soy in their products to someone who has told them they have a soy allergy. My advice is to avoid Kraft products if you have a soy allergy.
Most breads have soy and dairy - except for the artisan breads that are usually wheat, water and yeast.
Avoid Chocolate because of the soy lecithin - which is in everything processed. Most candy, and even TEA can have soy lecithin in it.
The weirdest thing I've found is that Mountain Dew and Gatorade have soy in them. Mountain Dew has Brominated Vegetable Oil - which is soy oil, and Gatorade has either that or soy lecithin...quite aggravating.
The other thing to watch out for is Natural Flavorings, which sometimes means soy derived additives.
For breadcrumbs I have discovered Cream of Wheat works well, I coat fish and Chicken in it and use it in meatloaf. Any brand of Organic cracker/cookies I have found are soy free, these are life savers. He also likes "enjoy life" brand cookies and granola bars. Generic brands tend to have soy, good luck
Tuesday, March 12, 2013
Just One More Day
While I was driving in the car today, I heard on the radio a person asking the question, "What would you do for one more day if you had the chance to do something with a person that had passed away?" Who would you choose? Why? The person that called in mentioned an uncle that had passed away. How he loved to play baseball. How she would love to have a day with him and her kids. For her kids to play a baseball game with him.
All this got me to thinking about Mitch Albom's book, For One More Day. I feel a connection to that book in a way. My mother passed away when I was only 13. I didn't know until I was a young adult that she had given up a child for adoption when she was a young adult. She was always "Mom" to me. I didn't know any different.
If you could spend one more day with someone who has died, who would you choose? Why?
I would choose my mom. Because I was only a child when she died, I would like to do "girly" things with her as we are both grown women. Go to a beauty shop and get our hair done, nails done. Go shopping for new clothes and just enjoy being together enjoying an ordinary day with the family. Have her grandchildren meet her and see the love in her eyes for all her children and grandchildren. Then finish the day with a meal, either at home or at one of those all hours restaurants like Village Inn or IHOP. All the while, I think I would be looking at her face to forever etch her happy eyes and smile in my memory.
Why do you think people tend to take for granted the people they love? Do you regret ways you have treated your parents or other loved ones? Do you think you can make it better?
I think people take others for granted because it is easy to do. It is hard work to not take someone for granted, especially a parent. A parent is always there, loving unconditionally no matter what. You can get fuming mad, but they still love you because you are the child and always will be. I know I can lose my temper. It isn't a good thing. I try not to. Life circumstances happen and things pile up one on top of another and then, BOOM! I've had enough. I hope I can make it better. One day at a time, Sweet Jesus. That's all I can do.
Do you agree that there is no love as pure as a mother's love?
Yes, a mother's love is tender, raw and beautiful all at the same time. I have a memory from my chidhood during one summer in Oklahoma. A tornado was near. We did not have a cellar in our home. My brother and I had our sleeping bags in the hall. We were playing and hanging out while mom listened to the radio and watched the updates on tv. When the storm came close, she put her body over us to protect us from the storm. Our home was not damaged in the storm, but I remember that she would cover me and my brother with everything she had for our safety. I hope my son feels the same type of love from me too. Later on she endured a lot of pain and unpleasantness with cancer. Both mom and dad did all they could to protect me from the horrors of cancer. I am glad they did, but at the same time sad that my brothers had to witness things that I was shielded from at the time.
Every family is a ghost story? Do you agree? What are the ways your family has shaped you?
I agree. Long after our loved ones have passed away, we still remember them. The memories linger and mostly are happy memores. In my case I hope to instill happy memories for my son that he will cling to throughout his life. Memories of a silly mom driving him to various places in the car (not afraid to belt out an operetic aria or a silly tune at the drop of a hat), a loving mom (always ready for a hug and kiss), a crazy mom (researching online for any answers to things in his life... researching so much I put the FBI to shame), a mom that drives him crazy with her worries about him (may even stalk him when he gets older... worried that he will make smart choices in life), a mom that will always fight for him no matter what (I have been fighting for him his whole life. Fighting insurance companies to get a full evaluation done, fighiting the school district for services he needs to flourish in the public school system).
Birth order plays a role, I am the youngest in my family. Life circumstances also play a role in shaping you for the person you become. Both my parents passed away before I reached my 28th birthday. My first marriage disintegrated. My present husband was active duty and now is retired from the USAF with a lot of health issues. My son was identified with high functioning autism at the beginning of 2013.
So, in conclusion if I had one more day, I would want it to be an ordinary day. Doing ordinary "girly" things with my mom. Would hang out with the whole family and members of the family that have been born since she went on to heaven. A chance for her to see me as a woman, not just the little girl that she loved so very much.
All this got me to thinking about Mitch Albom's book, For One More Day. I feel a connection to that book in a way. My mother passed away when I was only 13. I didn't know until I was a young adult that she had given up a child for adoption when she was a young adult. She was always "Mom" to me. I didn't know any different.
If you could spend one more day with someone who has died, who would you choose? Why?
I would choose my mom. Because I was only a child when she died, I would like to do "girly" things with her as we are both grown women. Go to a beauty shop and get our hair done, nails done. Go shopping for new clothes and just enjoy being together enjoying an ordinary day with the family. Have her grandchildren meet her and see the love in her eyes for all her children and grandchildren. Then finish the day with a meal, either at home or at one of those all hours restaurants like Village Inn or IHOP. All the while, I think I would be looking at her face to forever etch her happy eyes and smile in my memory.
Why do you think people tend to take for granted the people they love? Do you regret ways you have treated your parents or other loved ones? Do you think you can make it better?
I think people take others for granted because it is easy to do. It is hard work to not take someone for granted, especially a parent. A parent is always there, loving unconditionally no matter what. You can get fuming mad, but they still love you because you are the child and always will be. I know I can lose my temper. It isn't a good thing. I try not to. Life circumstances happen and things pile up one on top of another and then, BOOM! I've had enough. I hope I can make it better. One day at a time, Sweet Jesus. That's all I can do.
Do you agree that there is no love as pure as a mother's love?
Yes, a mother's love is tender, raw and beautiful all at the same time. I have a memory from my chidhood during one summer in Oklahoma. A tornado was near. We did not have a cellar in our home. My brother and I had our sleeping bags in the hall. We were playing and hanging out while mom listened to the radio and watched the updates on tv. When the storm came close, she put her body over us to protect us from the storm. Our home was not damaged in the storm, but I remember that she would cover me and my brother with everything she had for our safety. I hope my son feels the same type of love from me too. Later on she endured a lot of pain and unpleasantness with cancer. Both mom and dad did all they could to protect me from the horrors of cancer. I am glad they did, but at the same time sad that my brothers had to witness things that I was shielded from at the time.
Every family is a ghost story? Do you agree? What are the ways your family has shaped you?
I agree. Long after our loved ones have passed away, we still remember them. The memories linger and mostly are happy memores. In my case I hope to instill happy memories for my son that he will cling to throughout his life. Memories of a silly mom driving him to various places in the car (not afraid to belt out an operetic aria or a silly tune at the drop of a hat), a loving mom (always ready for a hug and kiss), a crazy mom (researching online for any answers to things in his life... researching so much I put the FBI to shame), a mom that drives him crazy with her worries about him (may even stalk him when he gets older... worried that he will make smart choices in life), a mom that will always fight for him no matter what (I have been fighting for him his whole life. Fighting insurance companies to get a full evaluation done, fighiting the school district for services he needs to flourish in the public school system).
Birth order plays a role, I am the youngest in my family. Life circumstances also play a role in shaping you for the person you become. Both my parents passed away before I reached my 28th birthday. My first marriage disintegrated. My present husband was active duty and now is retired from the USAF with a lot of health issues. My son was identified with high functioning autism at the beginning of 2013.
So, in conclusion if I had one more day, I would want it to be an ordinary day. Doing ordinary "girly" things with my mom. Would hang out with the whole family and members of the family that have been born since she went on to heaven. A chance for her to see me as a woman, not just the little girl that she loved so very much.
Friday, March 1, 2013
Serendipity or Something Like That
Today I was going through things in the closet, looking for some old jewelry. Instead I found an old notebook with notes I wrote down two years ago. These are notes I wrote to myself and took with me to my son's three year well child checkup. I knew I had a written record of my concerns. All my concerns were dismissed. All this time has been wasted when he could have been getting help. Makes me mad... mad at myself, mad at the military pediatric clinic. Just plain mad...
Concerns:
1. Mom has a lazy eye. Should we have Aiden looked at that. Occasionally in pictures notice one eye turning in.
2. Very hyper and easily distracted. Unable to sit still. Even at home for meals. Put him in booster seat and he screams. Usually OK if being held in Mommy's lap.
3. Still working on potty training. Has yet to make a bowel movement in the potty. Have been working on it for 9 months. He wears underwear with plastic pants over them at home. Pull-ups when away from home.
4. Rarely makes eye contact at bedtime.
5. Hardly ever takes a nap in the afternoons. Have quiet time in the afternoons with stories.
6. Most all nights comes to our room at some point during the night. Take him back to his room and within 20 minutes he is back in our room.
7. At Wal-Mart covers his ears when we walk by the heat and air vents. Seems sensitive to the noise.
8. When can we begin allergy testing? He has been on Zyrtec for a long time.
9. Says he is nauseous every day. May just be repeating what he hears Daddy say.
31 January 2011 he was 36.5 inches tall and weighed 31.3 pounds.
Concerns:
1. Mom has a lazy eye. Should we have Aiden looked at that. Occasionally in pictures notice one eye turning in.
2. Very hyper and easily distracted. Unable to sit still. Even at home for meals. Put him in booster seat and he screams. Usually OK if being held in Mommy's lap.
3. Still working on potty training. Has yet to make a bowel movement in the potty. Have been working on it for 9 months. He wears underwear with plastic pants over them at home. Pull-ups when away from home.
4. Rarely makes eye contact at bedtime.
5. Hardly ever takes a nap in the afternoons. Have quiet time in the afternoons with stories.
6. Most all nights comes to our room at some point during the night. Take him back to his room and within 20 minutes he is back in our room.
7. At Wal-Mart covers his ears when we walk by the heat and air vents. Seems sensitive to the noise.
8. When can we begin allergy testing? He has been on Zyrtec for a long time.
9. Says he is nauseous every day. May just be repeating what he hears Daddy say.
31 January 2011 he was 36.5 inches tall and weighed 31.3 pounds.
Wednesday, February 27, 2013
Vitamins, Minerals, Allergies and Autism
My son was identified with high functioning autism recently. He also has proprioception difficulties, as well as sensory processing disorder. He has a hard time realizing where his body is in space (proprioception difficulties). He is accident prone, so much so that his nickname is "Boo-Boo". His senory processing effects his ability to eat. He has a hard time sitting at the table to eat a meal. He also won't touch certain foods because of texture, etc. More so than just a usual five year old picky eater.
Being his mom, I find myself always researching. I have checked out numerous books at the library and also been looking online at reputable sources for more information. Knowledge is power. The more I learn, the more powerful I feel. I hope the information that I share can help at least one other family that may be experiencing similar life experiences that we are experiencing.
Something I found that is very interesting is the link between vitamins/minerals and autism. In particular Vitamin B6 and Magnesium. An important thing to remember is that Magnesium needs to be taken in conjunction with B6. Also, too much magnesium can be harmful. It has only been a couple of weeks, however, I have already seen improvements in my son's daily life. He is more focused, more affectionate and eye contact has been improving, slightly but indeed improving. Magnesium and Vitamin B6 in particular have been found to improve concentration and brain function.
I used to give my son a daily multi-vitamin in gummy form. He loves gummies. However, he was found to have a mold allergy. His allergy doctor suggested we start a mold elimination diet. This includes eliminating a lot of foods that are processed including: lunch meat, sliced cheese, condiments (ketchup, mustard, mayonnaise, salad dressing), yogurt. The list is extensive. Also, avoiding processed foods is recommended for people with autism as well. Generally, if you can't pronounce the ingredients in a food, why eat it?
He had been taking 5ml of Zyrtec at bedtime every night since he was about 18 months old. Finally found the source of the allergies. He had a reaction to nearly all the enviromental allergens. We are going through the testing to see what foods he may be allergic to as well. We have to stop the anti-histimine (Zyrtec) before allergy testing. Occasionally he will wake up with sneezing, runny nose, but most days he is feeling much better. I have also noticed that his voice is less nasal sounding than it used to be. Another thing we have found recently is that my son is allergic to soy. He will be tested for wheat by itself in early March. When he had the food allergy skin prick test done, the soy poke was about the size of a quarter and the wheat poke was next to it and about the size of a nickel. I imagine he is also allergic to wheat. For now we are avoiding soy as much as possible.
We started giving him a pediasure milkshake in the morning with breakfast (before we found out about the soy allergy), to help give him extra vitamins and minerals as well as to help aid in weight gain. He has weighed about the same weight for nearly 2 years. Also giving him the "old-fashioned" Flintstones chewable vitamin with immunity support. It includes B6 but not magnesium. I found a bottle of magnesium tablets for adults in the vitamin aisle in the grocery store. The tablets are 250mg. I use a pill splitter to cut the pills into 1/4s. He gets the Flintstone multivitamin and 1/4 of the magnesium with his breakfast. I could be giving my son more magnesium, but choose to give him approximately 60mg to start.
Giving about 3 or 4 mg of magnesium per pound of body weight, up to 400 mg per day for adults, enhances the effects of the B6 and protects against possible B6-induced magnesium deficiency. This is not a megadose of magnesium, but rather the amount that many researchers believe that everyone should take for optimum health. Almost every type of food processing depletes magnesium, so supplemental magnesium is essential to avoid a deficiency.
I will update from time to time as to how adding vitamins and minerals are helping my son. He still enjoys playing by himself mostly, but has shown that he wants to play with me some too. He actually grabbed me by the hand and said, "Mommy, play with me!", since I have started this treatment. It warms my heart.
There are some cases when a person with autism also has seizures. In those instances I believe medications should be prescribed. However, in the absence of seizures I believe that autism is best treated in a natural way. I believe it is a must to go through allergy testing to rule out allergens (environmetal and/or food). Also reducing processed foods as much as possible. And of course supplementing your child's diet with at least a multivitamin. As parents we often shop for the best deal to stretch the dollar at the grocery store. While looking at prices, never forget to also read the labels for what you are feeding your children and families.
Being his mom, I find myself always researching. I have checked out numerous books at the library and also been looking online at reputable sources for more information. Knowledge is power. The more I learn, the more powerful I feel. I hope the information that I share can help at least one other family that may be experiencing similar life experiences that we are experiencing.
Something I found that is very interesting is the link between vitamins/minerals and autism. In particular Vitamin B6 and Magnesium. An important thing to remember is that Magnesium needs to be taken in conjunction with B6. Also, too much magnesium can be harmful. It has only been a couple of weeks, however, I have already seen improvements in my son's daily life. He is more focused, more affectionate and eye contact has been improving, slightly but indeed improving. Magnesium and Vitamin B6 in particular have been found to improve concentration and brain function.
I used to give my son a daily multi-vitamin in gummy form. He loves gummies. However, he was found to have a mold allergy. His allergy doctor suggested we start a mold elimination diet. This includes eliminating a lot of foods that are processed including: lunch meat, sliced cheese, condiments (ketchup, mustard, mayonnaise, salad dressing), yogurt. The list is extensive. Also, avoiding processed foods is recommended for people with autism as well. Generally, if you can't pronounce the ingredients in a food, why eat it?
He had been taking 5ml of Zyrtec at bedtime every night since he was about 18 months old. Finally found the source of the allergies. He had a reaction to nearly all the enviromental allergens. We are going through the testing to see what foods he may be allergic to as well. We have to stop the anti-histimine (Zyrtec) before allergy testing. Occasionally he will wake up with sneezing, runny nose, but most days he is feeling much better. I have also noticed that his voice is less nasal sounding than it used to be. Another thing we have found recently is that my son is allergic to soy. He will be tested for wheat by itself in early March. When he had the food allergy skin prick test done, the soy poke was about the size of a quarter and the wheat poke was next to it and about the size of a nickel. I imagine he is also allergic to wheat. For now we are avoiding soy as much as possible.
We started giving him a pediasure milkshake in the morning with breakfast (before we found out about the soy allergy), to help give him extra vitamins and minerals as well as to help aid in weight gain. He has weighed about the same weight for nearly 2 years. Also giving him the "old-fashioned" Flintstones chewable vitamin with immunity support. It includes B6 but not magnesium. I found a bottle of magnesium tablets for adults in the vitamin aisle in the grocery store. The tablets are 250mg. I use a pill splitter to cut the pills into 1/4s. He gets the Flintstone multivitamin and 1/4 of the magnesium with his breakfast. I could be giving my son more magnesium, but choose to give him approximately 60mg to start.
Giving about 3 or 4 mg of magnesium per pound of body weight, up to 400 mg per day for adults, enhances the effects of the B6 and protects against possible B6-induced magnesium deficiency. This is not a megadose of magnesium, but rather the amount that many researchers believe that everyone should take for optimum health. Almost every type of food processing depletes magnesium, so supplemental magnesium is essential to avoid a deficiency.
I will update from time to time as to how adding vitamins and minerals are helping my son. He still enjoys playing by himself mostly, but has shown that he wants to play with me some too. He actually grabbed me by the hand and said, "Mommy, play with me!", since I have started this treatment. It warms my heart.
There are some cases when a person with autism also has seizures. In those instances I believe medications should be prescribed. However, in the absence of seizures I believe that autism is best treated in a natural way. I believe it is a must to go through allergy testing to rule out allergens (environmetal and/or food). Also reducing processed foods as much as possible. And of course supplementing your child's diet with at least a multivitamin. As parents we often shop for the best deal to stretch the dollar at the grocery store. While looking at prices, never forget to also read the labels for what you are feeding your children and families.
Sunday, February 24, 2013
Toxins and Autism
The Psalms say, “For you formed my inward parts; you knitted me together in my mother’s womb.” Such is my perspective for high-functioning autism. It shouldn’t be about the pains of autism, but about making life as rewarding and fulfilling as it can be.
I was born and raised in Altus, Oklahoma. It is known for its air force base and it is also an agricultural community. During my childhood I lived with a lot of toxins in the environment. My dad was a chain smoker, there were fogger trucks that would drive up and down the streets fogging for bugs during the summer months. The crop dusters would drop their pesticides on the crops that were grown in the surrounding area. I enjoyed swimming, especially in the hot summer months. My hair would have a green hue from being in the chlorinated water.
I married a man in the air force and have lived my entire life either near farming communities or near military bases. No matter where you live, there are toxins in the air that we breathe everyday. Sometimes you can smell it in the air and sometimes you cannot.
The day we were given the formal diagnosis of high functioning autism for my son, I remember the doctor saying one thing in particular. It keeps replaying in my head over and over. "That when two very intelligent people come together and have a child that occasionally the result is a child with autism. We don't know why, in a way it is sad but we must also celebrate the positives." I know I have been exposed to toxins all my life. Since my husband served over 20 years in the USAF I have no doubt that he has also been exposed to toxins related to his occupation. My father was also a career air force man. He served in Korea and two tours in Vietnam and was exposed to agent orange.
All this has lead me to doing more research on my own. This article was dated in 2012. I have always known there is a connection between toxins and autism, but here is proof. The Mount Sinai Children’s Environmental Health Center (CEHC) released a list of the top ten toxic chemicals suspected to cause autism and learning disabilities.
While there is controversy over how those numbers are reached, it still is worth repeating. There has been a 78% increase in children diagnosed with autism spectrum disorder in the last ten years. At the same time, the CDC also reported that ADHD now affects 14% of American children.
As these disorders continue to affect more children across the U.S., researchers are asking what is causing these dramatic increases. Some of the explanation is greater awareness and more accurate diagnosis. But clearly, there is more to the story than simply genetics, as the increases are far too rapid to be of purely genetic origin.
According to the Mount Sinai Children’s Environmental Health Center (CEHC) release and data from the research article, “Environmental Pollutants and Disease in American Children (July 2002), “the National Academy of Sciences reports that 3% of all neurobehavioral disorders in children are caused directly by toxic exposure in the environment and another 25% disorders are caused by interactions between environmental factors and genetics. But the precise environmental causes are not yet known”. (Note: the first version of this article included a link to the National Academy of Sciences study from 2000 and has been updated to include a link to the July 2002 study).
So while industry can claim that there is little evidence that these chemicals in isolation or in combination (which doctors now refer to as “synergistic toxicity”) cause autism, the truth is that there is still very little evidence or the toxicological safety studies. In other words, there is a gap in the science.
There is a huge gap. According to CNN, the EPA has tested only about 200 of the 80,000 chemicals in use.
But thankfully, that is changing with the work of the team at Mt. Sinai and the extraordinary leadership, courage and intellect of Dr. Phil Landrigan and the urgent call by experts to reform chemical laws.
To guide a research strategy to discover potentially preventable environmental causes and to arm parents and those hoping to be parents with knowledge, the Children’s Environmental Health Center (CEHC) has developed a list of ten chemicals found in consumer products that are suspected to contribute to autism and learning disabilities.
This list was published in Environmental Health Perspectives in an editorial written by Dr. Philip J. Landrigan, director of the CEHC, Dr. Linda Birnbaum, director of the National Institute for Environmental Health Sciences (NIEHS), and Dr. Luca Lambertini, also of the CEHC.
The top ten chemicals are:
1.Lead
2.Methylmercury
3.PCBs
4.Organophosphate pesticides
5.Organochlorine pesticides
6.Endocrine disruptors
7.Automotive exhaust
8.Polycyclic aromatic hydrocarbons
9.Brominated flame retardants
10.Perfluorinated compounds
As the Children’s Environmental Health Center shares, the editorial was published alongside four other papers — each suggesting a link between toxic chemicals and autism. Both the editorial and the papers originated at a conference hosted by CEHC in December 2010.
The first paper, written by a team at the University of Wisconsin – Milwaukee, found preliminary evidence linking smoking during pregnancy to Asperger’s disorder and other forms of high-functioning autism. The next two papers, written by researchers at the University of California – Davis, show that PCBs disrupt early brain development. The final paper, also by a team at UC – Davis, suggests further exploring the link between pesticide exposure and autism.
Ultimately, all five papers call for increased research to identify the possible environmental causes of autism in America’s children.
This importance of this call to action can not be emphasized enough, because while our children may only represent 30% of our population, they are 100% of our future and we need to protect them like our country depends on it. Because it does.
So what can you do to protect the health of your children? Thankfully, a lot. And while none of us can do everything, all of us can do something, so choose one, some or all from the list below:
•Eat organic food whenever possible to reduce exposure to synthetic pesticides which by law are not allowed for use in its production.
•Open your windows to clear the air in your home from the toxins that can accumulate there.
•Take your shoes off as you come inside to keep pesticides on the soles of your shoes from entering your home.
•Look for containers and plastic bottles that are “BPA-free".
Reference:
Mount Sinai Medical Center (2012, April 25). Top ten toxic chemicals suspected to cause autism and learning disabilities. ScienceDaily. Retrieved February 24, 2013, from http://www.sciencedaily.com /releases/2012/04/120425140118.html
I was born and raised in Altus, Oklahoma. It is known for its air force base and it is also an agricultural community. During my childhood I lived with a lot of toxins in the environment. My dad was a chain smoker, there were fogger trucks that would drive up and down the streets fogging for bugs during the summer months. The crop dusters would drop their pesticides on the crops that were grown in the surrounding area. I enjoyed swimming, especially in the hot summer months. My hair would have a green hue from being in the chlorinated water.
I married a man in the air force and have lived my entire life either near farming communities or near military bases. No matter where you live, there are toxins in the air that we breathe everyday. Sometimes you can smell it in the air and sometimes you cannot.
The day we were given the formal diagnosis of high functioning autism for my son, I remember the doctor saying one thing in particular. It keeps replaying in my head over and over. "That when two very intelligent people come together and have a child that occasionally the result is a child with autism. We don't know why, in a way it is sad but we must also celebrate the positives." I know I have been exposed to toxins all my life. Since my husband served over 20 years in the USAF I have no doubt that he has also been exposed to toxins related to his occupation. My father was also a career air force man. He served in Korea and two tours in Vietnam and was exposed to agent orange.
All this has lead me to doing more research on my own. This article was dated in 2012. I have always known there is a connection between toxins and autism, but here is proof. The Mount Sinai Children’s Environmental Health Center (CEHC) released a list of the top ten toxic chemicals suspected to cause autism and learning disabilities.
While there is controversy over how those numbers are reached, it still is worth repeating. There has been a 78% increase in children diagnosed with autism spectrum disorder in the last ten years. At the same time, the CDC also reported that ADHD now affects 14% of American children.
As these disorders continue to affect more children across the U.S., researchers are asking what is causing these dramatic increases. Some of the explanation is greater awareness and more accurate diagnosis. But clearly, there is more to the story than simply genetics, as the increases are far too rapid to be of purely genetic origin.
According to the Mount Sinai Children’s Environmental Health Center (CEHC) release and data from the research article, “Environmental Pollutants and Disease in American Children (July 2002), “the National Academy of Sciences reports that 3% of all neurobehavioral disorders in children are caused directly by toxic exposure in the environment and another 25% disorders are caused by interactions between environmental factors and genetics. But the precise environmental causes are not yet known”. (Note: the first version of this article included a link to the National Academy of Sciences study from 2000 and has been updated to include a link to the July 2002 study).
So while industry can claim that there is little evidence that these chemicals in isolation or in combination (which doctors now refer to as “synergistic toxicity”) cause autism, the truth is that there is still very little evidence or the toxicological safety studies. In other words, there is a gap in the science.
There is a huge gap. According to CNN, the EPA has tested only about 200 of the 80,000 chemicals in use.
But thankfully, that is changing with the work of the team at Mt. Sinai and the extraordinary leadership, courage and intellect of Dr. Phil Landrigan and the urgent call by experts to reform chemical laws.
To guide a research strategy to discover potentially preventable environmental causes and to arm parents and those hoping to be parents with knowledge, the Children’s Environmental Health Center (CEHC) has developed a list of ten chemicals found in consumer products that are suspected to contribute to autism and learning disabilities.
This list was published in Environmental Health Perspectives in an editorial written by Dr. Philip J. Landrigan, director of the CEHC, Dr. Linda Birnbaum, director of the National Institute for Environmental Health Sciences (NIEHS), and Dr. Luca Lambertini, also of the CEHC.
The top ten chemicals are:
1.Lead
2.Methylmercury
3.PCBs
4.Organophosphate pesticides
5.Organochlorine pesticides
6.Endocrine disruptors
7.Automotive exhaust
8.Polycyclic aromatic hydrocarbons
9.Brominated flame retardants
10.Perfluorinated compounds
As the Children’s Environmental Health Center shares, the editorial was published alongside four other papers — each suggesting a link between toxic chemicals and autism. Both the editorial and the papers originated at a conference hosted by CEHC in December 2010.
The first paper, written by a team at the University of Wisconsin – Milwaukee, found preliminary evidence linking smoking during pregnancy to Asperger’s disorder and other forms of high-functioning autism. The next two papers, written by researchers at the University of California – Davis, show that PCBs disrupt early brain development. The final paper, also by a team at UC – Davis, suggests further exploring the link between pesticide exposure and autism.
Ultimately, all five papers call for increased research to identify the possible environmental causes of autism in America’s children.
This importance of this call to action can not be emphasized enough, because while our children may only represent 30% of our population, they are 100% of our future and we need to protect them like our country depends on it. Because it does.
So what can you do to protect the health of your children? Thankfully, a lot. And while none of us can do everything, all of us can do something, so choose one, some or all from the list below:
•Eat organic food whenever possible to reduce exposure to synthetic pesticides which by law are not allowed for use in its production.
•Open your windows to clear the air in your home from the toxins that can accumulate there.
•Take your shoes off as you come inside to keep pesticides on the soles of your shoes from entering your home.
•Look for containers and plastic bottles that are “BPA-free".
Reference:
Mount Sinai Medical Center (2012, April 25). Top ten toxic chemicals suspected to cause autism and learning disabilities. ScienceDaily. Retrieved February 24, 2013, from http://www.sciencedaily.com /releases/2012/04/120425140118.html
Thursday, January 31, 2013
What is Normal?
Is your child normal? My child is not. What is normal anyway? Normal is anything within the expected and acceptable range of behaviors. Kids with high functioning autism look normal but don't act or react to normal situations like every other kid. In fact they look so normal that people often have no idea that they are autistic. But the way they perceive the world is vastly different from your perception of the world.
My son is five years old, brown hair, and gorgeous brown eyes. He really wants to be social, he will run with other kids in a field or playground, he speaks well, and plays on the playground mostly like everyone else, but gets lost in how to play pretend with them. He is different, and you wouldn't catch onto it if you didn't know him. You might think, "that was a little strange", if you saw a behavior you weren't familiar with, but you'd pass it off that everyone's a little different. But meanwhile my son is struggling. Struggling with just how to react, how to fit in, what to say next, or maybe just forget it and walk away instead. It's more than what normal children go through, its a constant battle for him to conquer behaviors and exert self control. He often repeats words and phrases he hears on tv, movies and books.
He hears everything and sees everything. He will be playing across the room and I may be having a conversation with my husband. He hears and repeats what we say. We go out often. He notices things that others may not notice. Lately the thing he loves to point out are fire bells and fire alarms. We were walking back to the car after shopping at a Dollar Tree recently. He said, "Look at the fire bells, Mom!" I said, "Where?" He said, "Over there! Behind the little brick wall!" There was a brick pillar and sure enough there was a fire alarm red box located on the exterior wall of the building on the other side of the brick pillar.
He obsesses about the littlest things, he gets confused by too many words, he is easily distracted. He worries at the weirdest times. He had to go to the bathroom when we were away from home. He kept repeating that he didn't want to poop in a toilet that wasn't at home. He will shout out 88 when excited. That is his favorite number. He is like a 2 or 3 year old socially. He invades personal space, he is very cuddly. Doesn't understand difference between real and make believe. If he sees something on tv it must be real. That is what he thinks.
He can't read people's faces, and sometimes puns and jokes go right over his head. He will laugh with others though, hysterically. Sometimes he seems too happy, almost giddy to just be him. He will cooperate at times wholeheartedly, but other times you will have to bribe him just to eat a meal. He is eager to please mommy, but will also get my attention in negative ways on purpose. Like running away from me towards the street when I told him to hold my hand as we walk back home or to the car. He is very proud of himself, because he has already forgotten that I disapprove of this. He craves and demands routine. If his routine is out of whack, everyone around him will be sorry, because he will start acting out until you can reestablish the routine he is familiar with. He gets overwhelmed by sensory information like excessive noise, or commotion and will balk at going into busy restaurants. But at the same time he is the cause of a lot of our family's sensory overload.
I have been doing a lot of reading and have found there are many things that you can do to help a child with this diagnosis function better.
1. Use flashcards with pictures of people displaying different emotions to train your child to recognize these emotions on the faces of people in their life. That way the visual information they see in real life will be more easily translated and they won't feel so lost and can adapt to current situations as they encounter them.
2. Practice self calming techniques. Deep breathing, stretching, counting, a favorite small stuffy to squeeze, weighted blankies; all these things can help reduce stress when going into a situation or environment that makes the child anxious or scared or to help them calm down once they are triggered.
3. Every family has some sense of routine. If you have to go out of routine, explain it to the child beforehand and let them know when things will be back to normal. This way they have a sense of control because they know beforehand and can often "wait it out". If you visit family out of town like we do, even keeping their regular bedtime routine will help satisfy some need for normalcy.
4. Rehearse common conversations with your child so that making friends will be easier. Practice the basic, "Hello, how are you?" "I am fine, thanks." "My name is so and so, what's yours?" "Would you like to play?" Role playing like this with mom and dad will make everyday conversation with peers come easier.
5. Encourage the child with a one-track mind to be open to talking about other subjects. Work with them on several subjects they can talk to other children about to help them not seem so rigid. Teach them how to talk about what they like for a few minutes and then switch to a new subject to allow their friend to talk about what they like.
6. If a child with HFA gets overwhelmed by their environment or someone in their environment be willing to give the kid a breather. Taking the child outside for a ten minute break away from what is triggering them can often be enough for everyone to keep their cool. At restaurants, I will often have us sit at a booth or table in a corner away from the kitchen and other customers. Occasionally I have him wear headphones to muffle sounds in public places such as restaurants, grocery stores. He knows that I keep the headphones in my purse. I let him know they are available and it is up to him to decide if he wants to wear them. Often this is enough to help him regain control.
7. Don't protect them too much. Let them feel some physical pain. Let them get their feelings hurt. But be there to teach a lesson when it happens. These kids have a really hard time processing consequences and information from their environment. You can help them process what happened and learn from it to use for next time.
Each child with autism is a little different. They all have their own special needs and ways of functioning. Being there for your child is the best thing you can do. Accept them for who they are and they will show you just how special and unique they really are. Use every situation as a learning tool, but be careful not to squash their creativity. They often are "out of the box" thinkers and will surprise you with the neatest observations. These little guys see the world so differently than we do, and sometimes that is really cool.
Autism doesn't suck because my kid freaks out in loud places like restaurants and bathrooms because of noises. It doesn't suck because I didn't get the shopping done. It doesn't suck because my five-year-old has the social skills of a child half his age. It's not about what the autism means to me.
Autism sucks because my Little Dude often experiences the world as an unbelievably frightening, overwhelming, and stressful place.
My son is five years old, brown hair, and gorgeous brown eyes. He really wants to be social, he will run with other kids in a field or playground, he speaks well, and plays on the playground mostly like everyone else, but gets lost in how to play pretend with them. He is different, and you wouldn't catch onto it if you didn't know him. You might think, "that was a little strange", if you saw a behavior you weren't familiar with, but you'd pass it off that everyone's a little different. But meanwhile my son is struggling. Struggling with just how to react, how to fit in, what to say next, or maybe just forget it and walk away instead. It's more than what normal children go through, its a constant battle for him to conquer behaviors and exert self control. He often repeats words and phrases he hears on tv, movies and books.
He hears everything and sees everything. He will be playing across the room and I may be having a conversation with my husband. He hears and repeats what we say. We go out often. He notices things that others may not notice. Lately the thing he loves to point out are fire bells and fire alarms. We were walking back to the car after shopping at a Dollar Tree recently. He said, "Look at the fire bells, Mom!" I said, "Where?" He said, "Over there! Behind the little brick wall!" There was a brick pillar and sure enough there was a fire alarm red box located on the exterior wall of the building on the other side of the brick pillar.
He obsesses about the littlest things, he gets confused by too many words, he is easily distracted. He worries at the weirdest times. He had to go to the bathroom when we were away from home. He kept repeating that he didn't want to poop in a toilet that wasn't at home. He will shout out 88 when excited. That is his favorite number. He is like a 2 or 3 year old socially. He invades personal space, he is very cuddly. Doesn't understand difference between real and make believe. If he sees something on tv it must be real. That is what he thinks.
He can't read people's faces, and sometimes puns and jokes go right over his head. He will laugh with others though, hysterically. Sometimes he seems too happy, almost giddy to just be him. He will cooperate at times wholeheartedly, but other times you will have to bribe him just to eat a meal. He is eager to please mommy, but will also get my attention in negative ways on purpose. Like running away from me towards the street when I told him to hold my hand as we walk back home or to the car. He is very proud of himself, because he has already forgotten that I disapprove of this. He craves and demands routine. If his routine is out of whack, everyone around him will be sorry, because he will start acting out until you can reestablish the routine he is familiar with. He gets overwhelmed by sensory information like excessive noise, or commotion and will balk at going into busy restaurants. But at the same time he is the cause of a lot of our family's sensory overload.
I have been doing a lot of reading and have found there are many things that you can do to help a child with this diagnosis function better.
1. Use flashcards with pictures of people displaying different emotions to train your child to recognize these emotions on the faces of people in their life. That way the visual information they see in real life will be more easily translated and they won't feel so lost and can adapt to current situations as they encounter them.
2. Practice self calming techniques. Deep breathing, stretching, counting, a favorite small stuffy to squeeze, weighted blankies; all these things can help reduce stress when going into a situation or environment that makes the child anxious or scared or to help them calm down once they are triggered.
3. Every family has some sense of routine. If you have to go out of routine, explain it to the child beforehand and let them know when things will be back to normal. This way they have a sense of control because they know beforehand and can often "wait it out". If you visit family out of town like we do, even keeping their regular bedtime routine will help satisfy some need for normalcy.
4. Rehearse common conversations with your child so that making friends will be easier. Practice the basic, "Hello, how are you?" "I am fine, thanks." "My name is so and so, what's yours?" "Would you like to play?" Role playing like this with mom and dad will make everyday conversation with peers come easier.
5. Encourage the child with a one-track mind to be open to talking about other subjects. Work with them on several subjects they can talk to other children about to help them not seem so rigid. Teach them how to talk about what they like for a few minutes and then switch to a new subject to allow their friend to talk about what they like.
6. If a child with HFA gets overwhelmed by their environment or someone in their environment be willing to give the kid a breather. Taking the child outside for a ten minute break away from what is triggering them can often be enough for everyone to keep their cool. At restaurants, I will often have us sit at a booth or table in a corner away from the kitchen and other customers. Occasionally I have him wear headphones to muffle sounds in public places such as restaurants, grocery stores. He knows that I keep the headphones in my purse. I let him know they are available and it is up to him to decide if he wants to wear them. Often this is enough to help him regain control.
7. Don't protect them too much. Let them feel some physical pain. Let them get their feelings hurt. But be there to teach a lesson when it happens. These kids have a really hard time processing consequences and information from their environment. You can help them process what happened and learn from it to use for next time.
Each child with autism is a little different. They all have their own special needs and ways of functioning. Being there for your child is the best thing you can do. Accept them for who they are and they will show you just how special and unique they really are. Use every situation as a learning tool, but be careful not to squash their creativity. They often are "out of the box" thinkers and will surprise you with the neatest observations. These little guys see the world so differently than we do, and sometimes that is really cool.
Autism doesn't suck because my kid freaks out in loud places like restaurants and bathrooms because of noises. It doesn't suck because I didn't get the shopping done. It doesn't suck because my five-year-old has the social skills of a child half his age. It's not about what the autism means to me.
Autism sucks because my Little Dude often experiences the world as an unbelievably frightening, overwhelming, and stressful place.
Saturday, January 19, 2013
Explanation and Rationalization
I’ve been writing this blog post for months in my mind. I have an ever-constant inner dialog playing, it’s a mix of explanation and rationalization… trying to wrap my brain around it and trying to figure out how to tell other people. But whether we can dispute it or not, we’ve decided to come clean with a little secret we’ve been keeping. In the fall 2012 his PCM gave him a provisional diagnosis of PDD. On January 17, 2013,we were thrown our biggest parenting curve ball to date… Aiden has officially been diagnosed with autism -- high functioning type.
Thank God!
I say this because I don’t want you to pity us or him. Ever since his diagnosis, emotions have run the gamut from anger, disappointment, sadness, grief, disbelief, relief, gratitude and now verging on acceptance. We are very lucky. Our child doesn’t have cancer. He isn’t physically disabled. He is and will always be our boy, and now we can get him the help he needs to make his life a little easier. Aiden’s autism is what they call “high functioning.” If full-blown autism is like swimming in a pool, then Aiden is just wading around the shallow end! You could look at Aiden, and even interact with him and never think he “acted autistic” (something people have said to me!) But on the days, even moments, that Aiden is struggling. You can tell and it’s like a tsunami!
As I would imagine is the same for anyone who receives a diagnosis, you feel like little birdies are chirping around you as you slowly float away from your body and watch yourself below nodding along with whatever the doctor is saying. At least that’s how it happened for me. I thought getting Aiden tested was just a formality.
I had checked Autism Speaks; I “knew” the signs of autism. (Hell, I have a freakin' bachelor’s degree in Special Education (with honors -- whoopteedoo!). I taught special ed for a few years. Some of my kids had autism. Occasionally, Aiden reminded me of one of those boys, but then I would tell myself no, not MY little boy. I KNOW what autism looks like. I saw Rainman. No matchstick counting here, thank you very much.) “Autistic kids don’t hug you. Autistic kids don’t look you in the eye. Autistic kids spend hours watching spinning tops.” Well, Aiden is a love bug, very affectionate, eye contact is fleeting (been bringing up that concern to doctors for over two years, and was dismissed too many times to count), he doesn’t watch things spin, but he will spin his body when excited or over-stimulated. Aiden, we now believe, has autism. He does throw a tantrum if you knock his Legos down. He has hit when he is feeling out of control.
August 2012 I wrote a letter to my son’s teacher about concerns I have about Aiden at home. That got the ball rolling. She wrote a letter explaining behaviors she has seen in the classroom. With BOTH of us showing that there are concerns, a referral to have a full-evaluation was finally done. I have always considered myself a hands on mom. Now I am even more so. We’ve been to occupational therapy, physical therapy, speech therapy etc. At the end of the day, all I was looking for was another kid who looked and acted like Aiden. A child who could make this all right in my mind.
What I found is that autism looks different on every kid. It’s a wolf in sheep’s clothing and some days it’s a sheep in wolf’s (itchy) clothing! And some days it’s a dolphin… why, because Aiden says he’s going to be a dolphin, and we don’t want to argue!
No two autistic kids have the same symptoms… well, I guess except the tantrums. That seems to be pretty universal! I told Dean that instead of donning an “Autism Speaks” puzzle bumper sticker, I want one that says “Don’t stare and give me parenting advice when you see my tantruming child!”
We were hesitant to tell people because a myriad of reasons, one of which being I have always been a worrier. Oh, it is just Margaret worrying again. It is nothing, get her a glass of wine or something to settle her nerves… While Aiden’s symptoms and reactions to them may improve, he will always struggle in some way with this. And this is far too big to go through alone!
Let me back up a little. Contrary to what so many people say “I always knew something wasn’t right” or “The day after his 3rd birthday everything changed,” I did not see this coming! Aiden has always been… shall we say a little fire? He was born six weeks preterm and stayed in the NICU for three weeks. With my background in special ed, I knew that there is a possibility of learning disabilities later in life with the correlation to being a preemie. I stayed home with him and it was structure, structure, structure. He had a routine at the hospital for feedings, we stayed on that and eventually he didn’t have to eat as often. Each day I did the routine with him. We listened to the classical instrumental music. I held him a lot and wore a sling with him cradled in it. He didn’t sleep through the night until he was a year old. He sat up unsupported at 8 mos. He took his first steps on his first birthday. He had a lot of spit up and was colicky after I finished breastfeeding when he was six months old. Once he walked, all he wanted to do was run.
As he got older, one thing he did particularly well was play by himself, which I took as a Godsend because I considered that a good thing to have an autonomous child! I don’t remember at what point he got out of control. I suppose it was around 2, just like every other kid! I felt like he had some issues with noise, but lots of kids do! He would scream at mealtime when in his booster seat. He had outgrown his high chair. He seemed to love the high chair, but could not stand the booster seat. I mentioned my concerns to our pediatrician at his 3rd birthday and he said all my concerns were “normal” and to try some different forms of time out and a sticker chart.
Great. A sticker chart. Has this guy seen my kid? He laughs in the face of sticker charts. Stickers…. Some kids love them. I tried so hard with potty training with those damn stickers. That is another entry altogether. Potty training. Shudder.
I made an appointment with a developmental pediatrician. I felt like she would either confirm the provisional diagnosis of PDD that his PCM had given or tell me that my son is just quirky.
Another very telling moment, in retrospect, was during the summer of 2012. He is obsessed with time machines. He “built” a time machine car in his room. He took various toys for the pieces of his car. I moved the pieces when I vacuumed his room. He had a huge fit and it was like it was the end of the world for his time machine car to not be how he left it. And at that point he had pushed all of my buttons! At my wit’s end, I went to Dean and said “I SWEAR THIS KID HAS ASPERGER’S!” Dean, just looked at me like a deer in the headlights. That moment scared me. Little did I know what was to come!
A big part of what bugs Aiden so much stems from something called Sensory Processing Disorder (most autistic kids have it, but not all kids with SPD have Autism). It’s a neurological condition that scrambles Aiden’s sensory input. If too many noises are going on at one time, for Aiden it’s like standing in front of the main speakers at a Pearl Jam concert. He can’t filter any of it out, his brain goes haywire and he has a meltdown. In addition to the noise, he also has a problem with his sense of “proprioception,” which is his ability to “know where he is in space.” Kids who have problems with this fall down… a lot. He is so accident prone that his nickname is “Boo-boo”. After he was diagnosed, we started noticing that when he walks down the hallway he always drags his hand along the wall or stays to one side. That’s because the hallway is too wide open a space for him and it freaks him out. Kids with proprioception dysfunction also have trouble grasping things or knowing how hard or soft to hold or push something. They could hold a Dixie cup and one day crush it and another day drop it (which we’ve seen him do!) His physical therapist says that just walking makes Aiden feel like things are coming at him. Could you imagine? It’s like being in a fun house all the time, only it’s not so fun.
So, like I said, we’ve spent the entire fall and into the winter taking him to evaluations trying to figure all this out. A big moment for me was summer 2012. I signed him up for VBS at church. The theme was aviation wonders. He loves planes and loves church. I figured it would be awesome for him. He had meltdown after meltdown while in the area when everyone is together. Too much sensory overload. Later we went on a road trip to Virginia to see his half-sister graduate from high school. He could not handle the noise when the friends and families cheered for their graduate. Took him to the zoo, he rode on the carousel; he freaked out while on it and had his hands over his ears the entire time. I rode with him in a sleigh type bench. He didn’t want to ride on a horse on the carousel. He was visibly nervous the entire time we were there. At one point, I was coming out of the bathroom and I spotted his grandmother walking with him across the way. Aiden was walking practically sideways like a crab. He had is head cocked to one side and looked like he was in pain. I can only imagine how stressful that day was for him. After those days, I realized we needed to start to see the world through Aiden’s eyes instead of forcing him to see it through ours.
He truly can’t help it. His brain is literally in overload and he craves order to try and ease the confusion. He plays with Legos and cars because they appeal to his sense of order. That’s also why when he’s making a “line-up” with his cars or building “the time machine car” or “the car wash” and someone messes it up, it’s a major tantrum. Sometimes Aiden expects things to happen a certain way, like always getting ice cream after a trip to the park or always pushing the handicap button at the mall. He counts on those things to happen because he needs the predictability. When it doesn’t happen, he melts down. And while his show-stopping tantrums are really easy to look at and say, “He’s too old for that” or “He just needs more punishment,” neither of those will help him nor change his behaviors. And it’s really easy to look at us and say “They give in to him too easily.” But, it takes all our resolve to be patient and know that “giving in” on a small scale really doesn’t make a difference in the grand scheme if it helps him out of the terror he is in.
Picture having the flu. You’re hot and cold all at the same time. You fall over while getting one leg and then the other into your pajamas. You muster up all your will to go downstairs and get some orange juice and you spill it all over yourself while trying to pour it. And then while trying to clean it, you slip and fall in it. You look up at the sky and say, “REALLY God? Really?” On any given day, one of those things might be frustrating, but all at the same time is just too much! Well, I think that’s how Aiden feels every day. So if we can ease the amount of times he has to say “Really God?” then we consider that a win!
We are still learning every day, both about autism and Aiden. I suppose it’ll be years before we figure it all out. But we wanted to let you know because they say it takes a village, and a village is exactly what we need.
If you want to read more about it, autismspeaks.org has a lot of amazing resources, but it’s also really overwhelming! I put a link here for a quick little thing called “10 things your autistic child wishes you knew.” I think this helps put it in a way that’s not so confusing or scary!
I wish there were some list of “ways to deal with Aiden” that I could give to make your interactions with him better. All I can say is please just be patient with him, and with us. And try not to cast judgment. Know that we are doing the best we can to help everyone’s lives as happy as possible!
The road ahead is not going to be easy, but like the Beatles we hope to “get by with a little help from our friends!”
We haven’t told Aiden he has autism. We will deal with that when he’s a little older. Right now, we’re just working on pre-school!
I will close with a line from an old song, “One day at a Time, Sweet Jesus!” because that’s exactly what we’re doing!
Thank God!
I say this because I don’t want you to pity us or him. Ever since his diagnosis, emotions have run the gamut from anger, disappointment, sadness, grief, disbelief, relief, gratitude and now verging on acceptance. We are very lucky. Our child doesn’t have cancer. He isn’t physically disabled. He is and will always be our boy, and now we can get him the help he needs to make his life a little easier. Aiden’s autism is what they call “high functioning.” If full-blown autism is like swimming in a pool, then Aiden is just wading around the shallow end! You could look at Aiden, and even interact with him and never think he “acted autistic” (something people have said to me!) But on the days, even moments, that Aiden is struggling. You can tell and it’s like a tsunami!
As I would imagine is the same for anyone who receives a diagnosis, you feel like little birdies are chirping around you as you slowly float away from your body and watch yourself below nodding along with whatever the doctor is saying. At least that’s how it happened for me. I thought getting Aiden tested was just a formality.
I had checked Autism Speaks; I “knew” the signs of autism. (Hell, I have a freakin' bachelor’s degree in Special Education (with honors -- whoopteedoo!). I taught special ed for a few years. Some of my kids had autism. Occasionally, Aiden reminded me of one of those boys, but then I would tell myself no, not MY little boy. I KNOW what autism looks like. I saw Rainman. No matchstick counting here, thank you very much.) “Autistic kids don’t hug you. Autistic kids don’t look you in the eye. Autistic kids spend hours watching spinning tops.” Well, Aiden is a love bug, very affectionate, eye contact is fleeting (been bringing up that concern to doctors for over two years, and was dismissed too many times to count), he doesn’t watch things spin, but he will spin his body when excited or over-stimulated. Aiden, we now believe, has autism. He does throw a tantrum if you knock his Legos down. He has hit when he is feeling out of control.
August 2012 I wrote a letter to my son’s teacher about concerns I have about Aiden at home. That got the ball rolling. She wrote a letter explaining behaviors she has seen in the classroom. With BOTH of us showing that there are concerns, a referral to have a full-evaluation was finally done. I have always considered myself a hands on mom. Now I am even more so. We’ve been to occupational therapy, physical therapy, speech therapy etc. At the end of the day, all I was looking for was another kid who looked and acted like Aiden. A child who could make this all right in my mind.
What I found is that autism looks different on every kid. It’s a wolf in sheep’s clothing and some days it’s a sheep in wolf’s (itchy) clothing! And some days it’s a dolphin… why, because Aiden says he’s going to be a dolphin, and we don’t want to argue!
No two autistic kids have the same symptoms… well, I guess except the tantrums. That seems to be pretty universal! I told Dean that instead of donning an “Autism Speaks” puzzle bumper sticker, I want one that says “Don’t stare and give me parenting advice when you see my tantruming child!”
We were hesitant to tell people because a myriad of reasons, one of which being I have always been a worrier. Oh, it is just Margaret worrying again. It is nothing, get her a glass of wine or something to settle her nerves… While Aiden’s symptoms and reactions to them may improve, he will always struggle in some way with this. And this is far too big to go through alone!
Let me back up a little. Contrary to what so many people say “I always knew something wasn’t right” or “The day after his 3rd birthday everything changed,” I did not see this coming! Aiden has always been… shall we say a little fire? He was born six weeks preterm and stayed in the NICU for three weeks. With my background in special ed, I knew that there is a possibility of learning disabilities later in life with the correlation to being a preemie. I stayed home with him and it was structure, structure, structure. He had a routine at the hospital for feedings, we stayed on that and eventually he didn’t have to eat as often. Each day I did the routine with him. We listened to the classical instrumental music. I held him a lot and wore a sling with him cradled in it. He didn’t sleep through the night until he was a year old. He sat up unsupported at 8 mos. He took his first steps on his first birthday. He had a lot of spit up and was colicky after I finished breastfeeding when he was six months old. Once he walked, all he wanted to do was run.
As he got older, one thing he did particularly well was play by himself, which I took as a Godsend because I considered that a good thing to have an autonomous child! I don’t remember at what point he got out of control. I suppose it was around 2, just like every other kid! I felt like he had some issues with noise, but lots of kids do! He would scream at mealtime when in his booster seat. He had outgrown his high chair. He seemed to love the high chair, but could not stand the booster seat. I mentioned my concerns to our pediatrician at his 3rd birthday and he said all my concerns were “normal” and to try some different forms of time out and a sticker chart.
Great. A sticker chart. Has this guy seen my kid? He laughs in the face of sticker charts. Stickers…. Some kids love them. I tried so hard with potty training with those damn stickers. That is another entry altogether. Potty training. Shudder.
I made an appointment with a developmental pediatrician. I felt like she would either confirm the provisional diagnosis of PDD that his PCM had given or tell me that my son is just quirky.
Another very telling moment, in retrospect, was during the summer of 2012. He is obsessed with time machines. He “built” a time machine car in his room. He took various toys for the pieces of his car. I moved the pieces when I vacuumed his room. He had a huge fit and it was like it was the end of the world for his time machine car to not be how he left it. And at that point he had pushed all of my buttons! At my wit’s end, I went to Dean and said “I SWEAR THIS KID HAS ASPERGER’S!” Dean, just looked at me like a deer in the headlights. That moment scared me. Little did I know what was to come!
A big part of what bugs Aiden so much stems from something called Sensory Processing Disorder (most autistic kids have it, but not all kids with SPD have Autism). It’s a neurological condition that scrambles Aiden’s sensory input. If too many noises are going on at one time, for Aiden it’s like standing in front of the main speakers at a Pearl Jam concert. He can’t filter any of it out, his brain goes haywire and he has a meltdown. In addition to the noise, he also has a problem with his sense of “proprioception,” which is his ability to “know where he is in space.” Kids who have problems with this fall down… a lot. He is so accident prone that his nickname is “Boo-boo”. After he was diagnosed, we started noticing that when he walks down the hallway he always drags his hand along the wall or stays to one side. That’s because the hallway is too wide open a space for him and it freaks him out. Kids with proprioception dysfunction also have trouble grasping things or knowing how hard or soft to hold or push something. They could hold a Dixie cup and one day crush it and another day drop it (which we’ve seen him do!) His physical therapist says that just walking makes Aiden feel like things are coming at him. Could you imagine? It’s like being in a fun house all the time, only it’s not so fun.
So, like I said, we’ve spent the entire fall and into the winter taking him to evaluations trying to figure all this out. A big moment for me was summer 2012. I signed him up for VBS at church. The theme was aviation wonders. He loves planes and loves church. I figured it would be awesome for him. He had meltdown after meltdown while in the area when everyone is together. Too much sensory overload. Later we went on a road trip to Virginia to see his half-sister graduate from high school. He could not handle the noise when the friends and families cheered for their graduate. Took him to the zoo, he rode on the carousel; he freaked out while on it and had his hands over his ears the entire time. I rode with him in a sleigh type bench. He didn’t want to ride on a horse on the carousel. He was visibly nervous the entire time we were there. At one point, I was coming out of the bathroom and I spotted his grandmother walking with him across the way. Aiden was walking practically sideways like a crab. He had is head cocked to one side and looked like he was in pain. I can only imagine how stressful that day was for him. After those days, I realized we needed to start to see the world through Aiden’s eyes instead of forcing him to see it through ours.
He truly can’t help it. His brain is literally in overload and he craves order to try and ease the confusion. He plays with Legos and cars because they appeal to his sense of order. That’s also why when he’s making a “line-up” with his cars or building “the time machine car” or “the car wash” and someone messes it up, it’s a major tantrum. Sometimes Aiden expects things to happen a certain way, like always getting ice cream after a trip to the park or always pushing the handicap button at the mall. He counts on those things to happen because he needs the predictability. When it doesn’t happen, he melts down. And while his show-stopping tantrums are really easy to look at and say, “He’s too old for that” or “He just needs more punishment,” neither of those will help him nor change his behaviors. And it’s really easy to look at us and say “They give in to him too easily.” But, it takes all our resolve to be patient and know that “giving in” on a small scale really doesn’t make a difference in the grand scheme if it helps him out of the terror he is in.
Picture having the flu. You’re hot and cold all at the same time. You fall over while getting one leg and then the other into your pajamas. You muster up all your will to go downstairs and get some orange juice and you spill it all over yourself while trying to pour it. And then while trying to clean it, you slip and fall in it. You look up at the sky and say, “REALLY God? Really?” On any given day, one of those things might be frustrating, but all at the same time is just too much! Well, I think that’s how Aiden feels every day. So if we can ease the amount of times he has to say “Really God?” then we consider that a win!
We are still learning every day, both about autism and Aiden. I suppose it’ll be years before we figure it all out. But we wanted to let you know because they say it takes a village, and a village is exactly what we need.
If you want to read more about it, autismspeaks.org has a lot of amazing resources, but it’s also really overwhelming! I put a link here for a quick little thing called “10 things your autistic child wishes you knew.” I think this helps put it in a way that’s not so confusing or scary!
I wish there were some list of “ways to deal with Aiden” that I could give to make your interactions with him better. All I can say is please just be patient with him, and with us. And try not to cast judgment. Know that we are doing the best we can to help everyone’s lives as happy as possible!
The road ahead is not going to be easy, but like the Beatles we hope to “get by with a little help from our friends!”
We haven’t told Aiden he has autism. We will deal with that when he’s a little older. Right now, we’re just working on pre-school!
I will close with a line from an old song, “One day at a Time, Sweet Jesus!” because that’s exactly what we’re doing!
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