When you hear or read of people discovering their children have autism, there is almost always an earth-shattering moment when they hear a doctor say, “I’m sorry, your child has autism”. For my family, it was very different. There was no specific moment of shock, no one person who told us that our lives were going to change... much less drama than you often hear of. It was very gradual. I happen to believe that my God knows me well and knew that, were I to be blindsided all at once by such life-changing news about my children, I wouldn’t have been able to handle it.
When our youngest daughter was 8 months old, she began to have what we now know were seizures. Neither my husband nor I have any family history of epilepsy and I was completely unaware of any seizures other than grand mals, so when our baby began to fling her arms and legs out like a startle or Moro Reflex, I had no idea what was going on, but I knew it wasn’t right. Once we got the diagnosis of a seizure disorder and began treating it, we didn’t know what we were in for. She was watched closely by a pediatric neurologist and her regular doctor, but they couldn’t tell us in that moment how she would be affected. In the research I did on Infantile Spasms (her diagnosis), the prognosis ran the gamut - some children became seizure-free and led perfectly normal lives and for some, the seizures proved to be a sort of warning sign for more adversity to come. As our daughter grew, we realized she was developmentally delayed, but it wasn’t until she was in school that we finally decided we were dealing with Gertie.
We knew when our oldest daughter entered preschool that she was struggling with her new environment, but shrugged it off, thinking she just had to get used to going from being home with Mom and Little Sister to a room full of noisy three and four year olds. As time went on, we could see that she was not getting acclimated to things. She would cry and beg not to go and once there, she didn’t participate much and would plug her ears the entire time. It’s very difficult to function, let alone learn, when you feel compelled to keep your fingers in your ears. We had noticed that specific sounds, such as the Happy Birthday song and the vacuum would send her into hysterics - even to the point of getting physically sick. We were definitely perplexed by it, but found ways to rationalize it to make ourselves feel better. Luckily, our younger daughter’s Occupational Therapist through Early Intervention happened to be at the preschool our oldest was attending and observed her behavior there. She came to us and told us that our daughter was not just being a stubborn or shy preschooler, she was dealing with some very real sensory issues. There were sounds and situations that her system was not able to process in the same way that most kids could. That was our introduction to Gertrude.
Our oldest daughter switched to the school-based preschool where she received some extra support and made excellent progress, but as time went on, we determined that she was dealing with Asperger Syndrome. For those unfamiliar, Aspergers is often considered a very mild form of autism or “high-functioning” autism. I tend to think of Aspergers more as its own disorder - sort of a distant cousin of autism. People with Aspergers or “Aspies” as they may refer to themselves, are of average to above-average intelligence, but they have difficulties with the social part of life and usually have pretty significant sensory issues. In order to do it justice, I’ll wait until another time to better explain Asperger Syndrome.
There are so many red flags for autism that you hear about: lack of eye contact, atypical play behaviors, difficulty with communication, but the thing is, not everyone dealing with an autism spectrum disorder shows all the “typical” symptoms. Autism spectrum disorders are so variable that, “if you’ve met one person with autism, you’ve met one person with autism”. For a long time, we didn’t feel our youngest was dealing with Gertrude because she was so affectionate. She loves physical contact, if it is on her terms. And for those with Aspergers, the red flags can be so much more subtle that it’s difficult to tell that they are any different at all sometimes. Someone asked me the other day if I believed there was a cure for autism. As awesome as that is to consider and as much as a parent like myself might want to believe the stories you sometimes hear, I don’t think a “cure” is possible. Personally, I think to insinuate that there is some kind of life-long remedy does a disservice to those struggling with autism everyday. What I believe is that Gertie is always present, just not always in control. If we give individuals with autism all the proper tools and the people around them are supportive and kind, they may appear to be cured, but they have to work very hard at it.
I guess my point is, autism is not going away. It wasn’t easy, but my family has learned to accept Gertie and we hope the world around us can, too.
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