This is a post that I have set down a hundred times to start and either couldn’t finish or couldn’t begin because I can not seem to find the words. Our journey into autism is one of resilience, love, and unyielding determination. From a seemingly normal pregnancy that took an unexpected turn to facing the daunting prospect of a severe autism diagnosis, every step has been a testament to the strength within us. I will do my best to tell our story. My pregnancy was a normal pregnancy. There were no issues aside from him being born 2 weeks early, which was necessary as he had run out of room to grow. He was hitting all his milestones as was expected, but at 12 months, that is when things took a turn. He had gotten his routine vaccinations and everything changed after that. Up to that point, he had a 10 word vocabulary, was crawling and even pulled himself up on furniture so he could take a few steps before falling down and crawling again. After he got the standard vaccines, he became quite sick with fevers, loss of appetite and restlessness. I reported it to the doctor several times and each time she told me this was normal. His symptoms subsided after 3 days but he no longer would speak or crawl. His once vibrant expressions were replaced with a flat affect. I had taken him to be examined and learned that he had a vaccine accident. A nurse had accidentally given him 2 DTAP shots instead of 1. During this time, he began having seizures and tics. Other symptoms began appearing like loss of skills such as speech, the ability to crawl and take a few steps. He had difficulty chewing and swallowing food. His sleep pattern was completely off. He was more irritable, and he would just stare off as though you were not even there with him. I knew my son had symptoms of autism, so I pushed to have him tested.
At 2 years old, the testing began and it was awful to say the least. You go through medical testing, genetic testing, psychiatric and psychological testing. It’s brutal. I truly do not like the process at all. I felt helpless. We had numerous scares with the testing such as at one point we were told my son had a rare heart condition that was potentially fatal, so we had to get a second opinion, which was terrifying but it turned out to be something less scary, it was a rare heart murmur that only needs to be monitored. Another time we were sent for a second test because he had initially tested positive for a creatine transporter disorder, which does look a lot like autism, however when we went for further testing, it was a false positive. Once he was diagnosed with severe autism, I was told to start looking for a home to place him in as I would not be able to handle him. I was appalled at the suggestion, and I told the psychologist that I would indeed be able to handle him and that I would not be placing my baby in a home.
I began researching autism as though it were some foreign concept I had never heard of. I read everything I could get my hands on, from the technical medical to the arcane. I wanted to understand the thing that changed my baby. I needed to know what this was so that I could fight to save my son. I could not fight what I did not understand. First was fighting the symptoms. I got him in therapy immediately. We did speech, occupational and physical therapy. No eye contact, no problem. I started working with him every single day and making eye contact and learning how he communicated with non-verbal cues. I knew what he wanted, needed, was thinking and feeling without words. As he got older, he still was not talking. I decided to try everything with him such as PECS cards, sign language, an AAC device and speech. I thought he would eventually go with one, but I knew he needed to have a way to communicate with others during this time, and that is why I tried everything. This went on until he was 8, when finally a breakthrough happened when he expressed a desire to talk. There is a lot that happened between 8 and 16 but I will save that for another time.
So, he is now 17. To those of you on the outside looking in, I say reach out when you get the diagnosis. There are things that can help, even aromatherapy. The best part about reaching out is someone is listening and yes, that someone can be me. You will feel guilt, and you may even feel sadness, which is normal. Is this easy? Absolutely not! Is it worth it? 100% yes! There will be days you want to give up and hide under the covers, but you know what you have to do. You have a person depending on you for their very existence and if that is not motivation to keep going, I don’t know what is and I can honestly say, yes he can talk and yes he understands what you are saying. At the age of 6, I pulled him out of public school and placed him in a home based autism school. He began getting intense 1 on 1 education that was catered to him. I have had him in therapy since prior to the diagnosis. I used every type of calming thing you can imagine, because he had some wicked behaviors. I have been bitten, headbutted, handfuls of hair pulled out of my head, clawed to bits and the list goes on. I have suffered tremendous guilt over the diagnosis because I blamed myself. I know it is not my fault, but the guilt is real. I went through a divorce when he was 5. But all was not lost. I may have found myself alone and trying to do it all, that did not last. Eventually I did find someone who loved both myself and my son and accepted us just the way we were. Slowly the pieces came back together but stronger than they were before. We still have our moments, but progress has happened and continues to do so. My son is still severely autistic, BUT he has a beautiful mind. He has a photographic memory, he is a whiz with geography, he can read and understands it, he can surf the computer or a tablet faster than your head can spin, and even understands sarcasm (to a point) and he can be sarcastic (to a point), he will try to do things people find funny and he will try to tell jokes, even if its a simple knock knock joke. I will never give up on him and I accept him completely, no matter what.
Originally written March 19, 2023
Copyright © 2023 by Kerry Adams