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.

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

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! :)