"What makes us better people? It's not the uneventful, routine parts of our lives. It's the hardships, challenges, crises, and unexpected surprises that build our character and make us stronger."
If you watched the US presidential debate last night, you heard that autism is on the rise. If you're like me, you don't know a heck of a lot about it. I saw the movies Rain Man, and Mozart and the Whale (one of my favorite movies, by the way), and I've read a few articles in Newsweek about autism over the years. However, I suspect this narrow view provided by the media can't begin to explain what it's like to live with autism day in and day out.
According to the Autism Society of America, autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a "spectrum disorder" that affects individuals differently and to varying degrees. Karen, a forty-two-year-old mother of six who lives in Washington State, found herself thrown into the world of autism when her youngest son, Adrian, was born. This gutsy, fantastic mom has volunteered to become the first official member of the Aberration Nation by sharing her experience with us.
Describe autism for us using your own terms. What is it like to have a child with autism, and how does it impact your day-to-day?
There are several aspects of autism. For Adrian, the main challenges are speech delay, obsessive-compulsive behavior, hyperactivity, and anxiety. It’s not just a developmental disorder, it’s psychological. Adrian's autism affects just about every part of our family life. From 18 months to around three-years-old, screaming was his form of communication. I was going out of my mind. I had my husband bring home a pair of ear plugs because I had to take the edge off. The high-pitch actually hurt my ears. With the plugs, I could still hear and help him, while also protecting my ears. As his speech has improved, the screaming has nearly disappeared. However, the meltdowns and head banging have not. His head banging began at 18 months and continues. It hurts to see your child hurt himself and be frustrated with his own inability to communicate. Just like all parents, I want to make it all better.
Because Adrian has such strong obsessive-compulsive behaviors, he likes routine. All toddlers like routine, but for autistic children, it’s imperative. Because Adrian was born into a big family, he isn’t too rigid. We try not to let autism get in our way of family fun. It does restrict us sometimes, but we do our best. For example, for vacations, I try to rent a house or a townhouse so we don’t have to worry about Adrian getting too loud. In a hotel, we would worry that Adrian’s temper tantrums would disturb others. When shopping, I pick up a bag of plain M&M’s, and I’m usually able to accomplish my goals without too much trouble. If he does have a meltdown, I do what any parent with a toddler does. I pick him up and leave the store immediately. People think Adrian is an ordinary toddler having a tantrum. I worry and wonder if he'll still have tantrums at ten. That’s when I’ll get the look.
How did your son come to be diagnosed with autism, and what was your initial reaction? How did you cope and how has your view changed over time?
I knew Adrian was autistic before he was diagnosed. When he was 18 months old I realized he was behind in speech. Then the head banging began. It was violent and disturbing. I knew something wasn't right. We bought Geotrax train sets for Adrian at Christmas. He was too young to set them up, but enjoyed watching the trains. He was obsessed. I had to buy rechargeable batteries because he played with the train set all day long for three days in a row. No toddler plays with one toy for that long. If there is one thing I can say about an autistic child like mine, you will get more than your money’s worth on your toy purchase.
I began researching all the different disorders that matched my son’s behavior. The only thing that made sense to me was autism. I cried and grieved just as if Adrian had died. When I realized something was wrong, the son I thought I would have died. When this happens, all those dreams we as parents have for our children are suddenly gone. During those first few weeks, it’s dark; it feels like it will never get better. Researching and taking advantage of all my resources, such as medical and educational, made me feel like I had some sort of control over autism. The support that the medical and educational system gives parents/siblings is invaluable. Adrian’s family doctor didn't believe autism was the correct diagnosis, but I asked him to send us to Children’s in Seattle for our evaluation. He did without any hesitation.
We went to Children’s, and Adrian was diagnosed. It enlightened our family doctor to the fact that there are so many faces to autism. Adrian is very social and engaging, so it is a surprise to people when they find out he is autistic. If they spent the entire day with Adrian, they would see the speech delay, the obsessive-compulsive behavior, and the temper tantrums. After grieving the loss of what I thought my child’s life would be, it was very easy to accept new and different ideas of what his life would be.
Most of the time, Adrian is a very happy, energetic, funny, and lovable kid. It’s so much fun having him in the mix of this family. Seeing his fast progression gives us hope for his future. He is intelligent. He has mastered most of the things preschoolers learn such as his ABCs, counting to 20, all his shapes, and colors. He will blow you away with his ability to surf the Internet, operate the DVD player, and play video games well beyond his age level.
How has autism shaped your life in general, including your self esteem and your world view? Has it changed your views on motherhood?
Any challenge you face with success will improve your self esteem. I really worry about the world we live in since autism has skyrocketed. One of Adrian’s teachers says the increase is not due to diagnosing children that would not have been in the spectrum ten years ago. Rather, she says the increase includes the moderate to severe autistic children. This increase is frightening. In fact, there are three (including Adrian) autistic children on just one part of my street.
Now, as a mother, I worry more, and I’m more protective. I worry so much about Adrian going to kindergarten. He's been in a special education preschool since age three; however, he's in a class of five or six other kids like him. I worry about kids picking on him in elementary school. I’ve decided I will home school him if this happens. I know I cannot protect Adrian all his life, but if I give him a good start maybe he'll be strong enough to handle any hurtful remarks as a confident young adult.
What do you think are the most common misconceptions about autism?
The most common misconception about autism is that people think autistic children fit into one stereotypical box. The movie Rain Man is their point of reference--or some made-for-TV movie showing a boy rocking in the corner, totally detached from his environment. There are so many differences in autism, we cannot be distracted by the extremes of the spectrum.
What has autism taught you about yourself and others? How has it made you better or stronger?
It has been an epiphany for me. I never would have imagined being the mom of an autistic child. I simply did not think that I would make a good candidate. Most importantly, sense of humor must be maintained at all costs. A good sense of humor makes everything better. It has made me a stronger person. What makes us better people? It's not the uneventful, routine parts of our lives. It's the hardships, challenges, crises, and unexpected surprises that build our character and make us stronger. Adrian has taught me patience most of all because some things come a little slower with him. We went from a 30 word vocabulary with no two words together to sentences, but it took years. Each little milestone is amazing. I really learned to appreciate little accomplishments. For example, we were waiting for an open cashier at the commissary, when Adrian mimicked the electronic voice that says "next please." Adrian said, "Next please," just like a parrot. He had just turned three. Most three-year-old kids are chatting away, but Adrian was just beginning to put two words together.
I'm amazed at the relationship between Adrian and his sisters and brothers. Kids are so good with special needs kids. And I was so proud of my husband and how he had such an open and positive approach to Adrian. There was no negativity. I'm so grateful for that because sometimes parents never get over the loss of the ideas or expectations they have for their children. Not clinging too closely to those expectations for any of our children, special needs or not, is a good lesson to learn.
My husband and I definitely went through the feelings of guilt. We both thought did we do something to cause this. I thought that I didn't take care of myself well enough during the pregnancy. Did I get x-ray exposure at work accidentally? Has the military done something to my husband that affected the chromosomes? Is it hereditary? We went all through that, and it can drive a person crazy. However, we put a stop to that nonsense pretty quickly. For us, it doesn't matter how or why. We love Adrian dearly, and we will deal with everything one day at a time. We will leave the how and why to the researchers, and pray they are able to unlock the mystery.
What are the top three things we can do for parents dealing with autism?
1) Be understanding. If you're shopping and you see a child having a total meltdown, don’t jump to a conclusion that this parent doesn't know how to discipline. Don’t think that the child is undisciplined. First, consider that this child may be autistic.
2) Be supportive. If you have a friend or family member with an autistic child, it would be wonderful to have respite care. If you can't provide it, maybe you can research the area for a respite provider.
3) The most important thing you can do is PRAY. We all need prayer.
Autistic children are incredibly special people. They just look at the world in a different way.
It’s an honor being a part of their world.
If you'd like to join the Aberration Nation by sharing your story, contact me.
If you'd like to join the Aberration Nation by sharing your story, contact me.
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