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.

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.

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.

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

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.

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!

"Be Still and Know that I am God" Psalm 46:10

December 2012 Dear Friends and Family, Seems a good theme for the year is Psalm 46:10 “Be still, and know that I am God…” This has been confirmed all year long, as this verse has come up a multitude of times in a variety of ways. It is, however, much easier to say than to do. This has indeed been a year of waiting, of being still even in our troubles, and knowing that He is God. We have not always been good at this waiting, but I believe we are learning. I hope we are learning. We witnessed devastation that a wildfire can bring when it comes into the city limits. The Waldo Canyon Fire spread into the west side of Colorado Springs in late June. Nearly 30,000 people evacuated their homes, and 346 homes were destroyed on the west side. Our pastor and Aiden’s teacher were a couple of the families that had to leave their homes. They are lucky; their homes were not destroyed but they had major smoke damage from the fire. We live on the NE side of town. We did not have to evacuate, but we did have to deal with smoke for several days. Dean is continuing to work at the security company. He recently accepted a new position and will begin work with Jackson Hewitt in January 2013. His job will start as seasonal, but has the opportunity to move to a year round position. He received the decision of his VA disability this year; he has 90% disability and experiences intense pain from various ailments on a daily basis. Please keep him in your thoughts and prayers. We were able to travel to Virginia and see Dean’s daughter, Myriam, graduate from high school in June. She is an honor student, graduating fifth in her class. She came out to live with us in July. She is studying at the University of Colorado at Colorado Springs. Her long term goal is to become a naturopathic medical doctor. Dean’s parents came out to see us in July. They brought our 10-year-old nephew, Landon, with them. Dean’s brother, David, and Russell also came to see us in August. It is fun to have friends and family see us and I enjoy showing folks the sights in and near the Springs. I made a hard decision to leave my job at Community Partnership for Childhood Development-Head Start. The realization that my son needs intense therapy led to my decision to leave the company. Aiden has been diagnosed with provisional pervasive developmental disability and sensory processing disorder. He displays, some, but not all, symptoms of autism. This includes lack of eye contact, arm flapping, daily “scripts” during his tasks, being overwhelmed with noises that don’t seem to annoy others and lack of understanding what others say to him. Last year I took him to be evaluated and was told that he is immature and displays some ADHD tendencies. A couple of months ago I had a full evaluation done and findings were on the autism spectrum, sensory processing disorder often occurs with autism spectrum. We have also started the allergy testing process. He had a reaction to everything on the environmental back scratch test. His doctor wants us to start a mold elimination diet. The hardest items to eliminate are going to be cheese, yogurt and gummy bears. He loves all those things so very much. Aiden will be five years old in February. He is attending half day pre-K in our neighborhood school and he loves his teacher. So far he does not qualify for services through the school district. It is possible that he might receive services through the school for OT and PT. He scored lowest in those areas and his preschool teacher agrees with me that his visual processing disorder will make learning to read very difficult. She is in the process of relaying information to special services in the district. Our district is very large, cash strapped and his school building is bursting at the seams with enrollment numbers, so I am skeptical if anything will happen this school year. He is receiving speech therapy, occupational therapy and physical therapy at a pediatric rehabilitation center. So far, Tricare is covering the cost of therapy. We only have copays to worry about. Life brings challenges that test you but as long as we love each other and are together we will endure. Merry Christmas and we wish you happiness in the New Year. Thank you all for last year’s cards, letters and photographs. As always, we look forward to hearing from you in the coming year. Merry Christmas from the Warren Family