A New Little Wonder
Last June, our family was blessed once again with a new addition. Little Wondergirl arrived one week after Boy Wonder turned seven. She was the daughter I had always hoped for. I felt so lucky. I am so lucky.
If you recall the last time we welcomed a new family member, it was a highly stressful time for Boy Wonder. This time it was different. He was excited about having a baby sister. I don't think he would have been quite so excited if it had been another boy. Boys tend to see other boys as competition. Plus, he was older and had been through the new sibling thing before, so it was familiar territory.
When she arrived, he liked her just fine. But he was kind of indifferent, really. At the time, he was super into playing Minecraft. He wanted to be on his tablet all the time, playing Minecraft or watching Minecraft videos. I had just had a baby and it was summertime, so I just let it go. I figured it would help us get through the new baby craziness. It was just for a season, I thought.
When Wondergirl was three weeks old, Boy Wonder came down with a mysterious illness. One morning he woke up vomiting and having diarrhea. He had no fever and no other symptoms. He just felt terrible. It was literally the first time he had ever had diarrhea in all of his seven years. I was so worried that the baby was going to catch whatever bug he had contracted. Thankfully, she didn't. Neither did the rest of us, nor did any of our visitors, including both sets of grandparents.
He was better in a few days. Then it happened again. And again. Every time it got to the point where I was about to take him to the doctor, he got better. This kept happening sporadically through the fall. I brought it up at his next checkup, where I was told that he probably had contracted a virus.
I was not convinced. As I said, he had no fever or other symptoms. He had not been around other people with stomach bugs, nor did he pass his illness on to anyone else. It didn't seem to be related to something he ate, as he ate the same stuff the rest of us did. It was weird.
The next thing that happened kind of freaked me out. He started flapping his hands. He had never done this before. Sometimes he did it while jumping up and down. He did it when he was excited or frustrated.
I knew what that was. It was stimming. Short for self-stimulatory behavior, it is a classic sign of autism. Not everyone who stims has autism, but pretty much all autistic people stim. Some examples of stims include rocking back and forth, head banging, hand flapping and repeating noises or words. It's thought to be a calming activity.
At the end of the summer, we took a mini family vacation to Great Wolf Lodge, a hotel with a large indoor water park. As I watched my son splash around in the foot-deep toddler pool, wearing his life vest and flapping away, I thought, "Who am I kidding?"
Sure, he never quite fit the diagnosis. He had been such an amazingly bright, social, connected little child. Knowing what he had once been, it was hard to see what was clearly happening before my eyes. There was no denying it any more. He was on the autism spectrum.
Behavioral Regression and Loss of Skills
Over the next couple months, his behavior grew increasingly rigid. He started having frequent meltdowns over just about everything, even small things. He became frustrated very easily. He began hitting his head with his fists in anger or frustration.
I signed him up for the soccer team. He had played in the spring and he loved it. He wasn't particularly good at it, but he enjoyed the social aspects of it. He made friends and was well-liked.
This season was totally different. I had to drag him to practice. He kept saying he was too sick to go. At first, I thought he was making excuses, but in hindsight, I believe him. Once we were at practice, he would cling to me for the first several minutes. When he finally joined in, he was awkward and clumsy. He developed an unusual forward-leaning slow gallop for a run. At games, he spent most of the time zoned out on the sidelines, talking to no one. He didn't interact with the other kids and he made no friends. To make matters worse, he developed a sudden, severe allergy to grass, breaking out in hives whenever his skin came into contact with it.
He also started reacting to other things that he had tolerated previously. The scented laundry detergent at his grandparents' house now made his skin break out.
He started having meltdowns at OT. He'd been having hour-long weekly sessions for a long time, but suddenly that was too much for him. He had a resurgence of separation anxiety and refused to separate from me. We had to cut his sessions down to 30 minutes because that was all he could tolerate.
When dressing himself, he started putting his clothes on backwards, inside-out or sometimes even both. Soon, he became so frustrated with the task, that he refused to even attempt it. We had worked so hard to get him dressing himself independently. All that progress was lost. He could no longer dress himself.
I couldn't take him to the grocery store anymore. He ran circles around the shopping cart and jumped around. When I told him to stop, he followed closely behind me and flicked my ponytail constantly. He seemed to need to be in constant motion. Not only was it very frustrating for me, but we were starting to get dirty looks from the other patrons. He was "too old" to be acting that way.
He also developed a strange compulsion to lick things, such as my skin and the walls. He started having some verbal stims as well.
Schooling him became near impossible. He wasn't absorbing information the way he always had. He couldn't focus on his work. It became an extremely frustrating task for us both.
Explaining the Unexplainable
We attended a weekly homeschool co-op where he took an art class. He became extremely rigid and insistent that his artwork look just like the example. The whole concept of art being about individual creative expression was lost to him. He used a ruler to measure and draw his lines. Perfection was a lofty goal for him, considering his fine motor difficulties. If he made a mistake, he became angry and insisted on starting over.
The other families in the co-op witnessed meltdown after crazy meltdown. I found myself in the odd position of having to explain something that I didn't understand myself. What the other moms didn't know was that I was even more baffled than they were. What was happening to my baby? His behavior was so outside of normal that I could no longer describe it as some "issues" he was having. It needed a name.
"He has Asperger's," I told them. It was so hard to say that. I had shared with a few people that he might have Asperger's and that he had been provisionally diagnosed with it, but I had never before said that he had it. I tried to hold back tears. I couldn't.
It got to the point where meltdowns began happening at the drop of a hat. Pants that didn't feel quite right or even a simple "no" might send him spiraling out of control. He became volatile and unpredictable. Meltdowns turned to rampages, where he would storm through the house, sweeping his arm across tables and countertops, scattering books, papers, and picture frames all over the floor. He slammed doors and opened them forcefully, pushing doorknobs through drywall. He even slammed a hard object into a glass tabletop, shattering it to pieces. He stormed through the house like a little tornado, leaving a path of destruction in his wake.
At times, he turned his aggression towards me. He followed me around the house, arms swinging, legs kicking and yelling, "I'm going to punch you in the face!" At other times, he seemed to be unable to speak during his meltdowns. He would only moan and gesture to try to get his point across.
I took a few bruises and scratches, but I can mostly fend off a seven-year-old. But I knew that before too long he would be bigger and stronger than me. What then?
A recent study indicates that more than half of children and adolescents with autism spectrum disorder (ASD) are physically aggressive. If one in 68 children are being diagnosed with ASD these days (see current ASD statistics from the CDC) and more than half of them are aggressive, this is a big problem! Physical aggression is devastating to the affected families. I can personally attest to this. I think a lot of families must be suffering in silence.
Boy Wonder now fully met the diagnostic criteria for autism spectrum disorder. He was "high functioning," due to his verbal abilities and IQ, but he was not functioning highly. Going to school was never even an option for him. We were losing hope that he would ever function independently as an adult. We wondered what would become of him if his aggressive behavior continued. What would happen when we could no longer care for him? Maybe he would end up in an institution gorked out on psych meds. Maybe he would really hurt somebody someday and end up in prison. It's awful to think of these things, but the mind does wander.
Remembering the Boy that Was
My amazingly alert little baby that learned so quickly and effortlessly was now virtually unteachable.
My brilliant 16-month-old who could solve a puzzle immediately after seeing it for the first time now couldn't figure out which shoe went on which foot.
My gentle, sensitive toddler who never once hurt another child was now having violent fits of rage and aggression.
My thoughtful two-year-old who once asked, "Why are there hard work people?" could now only think of himself.
The gifted boy who we thought might one day become a scientist or an engineer had lost his problem-solving skills and could no longer dress himself.
And perhaps the saddest thing of all was that he was no longer happy. It was as if his joy, his passion and his spark had been sucked out of him. He was miserable.
What happened to my baby? He was not born this way. He became this way. What remained of my son was just a shell of the little boy we knew and loved so dearly.
He was gone. Stolen. We watched in horror as our precious child was snatched away from us, while feeling absolutely powerless to do anything about it.
And that is the story of how my baby boy had an autistic regression at the age of seven.