Ayden was a non-technical premie. His mother’s womb quit working and while he came out at 38 weeks, he only weighed 4 lbs. After three long weeks he was allowed to come home. Everything seemed normal. My first grandchild, a perfect little boy.
Around 9 months we started noticing him clinching his fists for no reason while clenching his whole body. We thought it was cute; working hard to capture it on video and in pictures. Finally, this stopped. I’m sure there were other stemming behaviors we saw but didn’t know what they were. Time progresses and relationships fall apart. Ayden was left in my care. To me he was never a difficult child. I raised his dad and he seemed very much like him as a child. To others, he was A LOT!!!
Around 2 I started seeking custody and was granted temporary custody at the age of 3. By this point there had been trauma and potential abuse. But I had him and I was sure we could work through the minor issues.
After getting custody, life fell apart quicker than I could keep it together. I tried. I tried. I tried some more and then still tried. But, in the end, what was left was me at 45 with a 3 year old. Having him all the time by myself I started realizing somethings didn’t make sense. He began the fist and body clenching stemming again and when I would try to calm him and say everything is ok; he’s reply would indicate he had no idea this behavior was happening. There were so many signs at this point. I researched everything and it all pointed to Autism. He would not sleep more than 5 hours a night for days and even then it was an eventful sleep. He began smelling things and licking things (and people… HEY, better than biting!). He would regress in one thing for a few days then revert back to age appropriate behavior over night. He started having issues with bowel movements. There was so many stemming behaviors it was unreal. We classified him in so many ways; but, in my heart I knew.
About a month in, I started to think it was me. That maybe I was causing this or I was crazy. There were nights I would call my friends who had autism in their life and ask them to come see what they thought. I began videoing and searching out others who had experience. Never once did we falter from the original fear. It’s AUTISM! And, sadly; everyone who was familiar with Autism agreed, while everyone who loved us.. didn’t. I understood it was a process so I stayed focused, isolated and trudged through. We’re two months in now and I still have trouble processing it. But, I know. And, I approach the situation as if it is while we wait for testing and results.
Today, I make a lot of sacrifices. Ayden comes first. Not a job, nor another person. He is a full time, round the clock JOB! I realize I don’t have the luxury of believing he won’t go to water because he has never had an obsession with it. That can change at any moment. And if I let my guard down that moment could be the one we don’t get through.
Dealing with this has made me see what all people see who love Autistic Kids! They are great. They have their meltdowns then they move on. Ayden doesn’t possess this inanimate attachment to people like most kids do. He is intimate, nosey, bossy and at times over bearing. But, what kid isn’t. Where he is different is how he handles stimulation. That’s it. He gets over stimulated and he loses it. Then he regains composure and appears ridden with guilt. He no longer lets me photograph him (something I’ve done lots of through out his life). I’m not sure why? Maybe he sees it in the photos. He makes reference to it as “Rushing”. He tells me how it feels.
My goal for Ayden is to do whatever I have to do to avoid creating any more hostility and aggression than he already has. I hold him accountable even before a meltdown. He isn’t allowed to be mean. He gets to make choices but he also gets consequences for those choices. It’s hard to pick apart what is normal three year old behavior and what is symptoms of Autism – other than the meltdowns. And, for our horrible journey through the early stages to be a stepping stone for others so they don’t have to lose friends and family and things. Awareness is the key. Had I been aware, Ayden would have gotten a much earlier intervention and maybe a lot less trauma.
So, when you see a kid in a store acting crazy, don’t just assume he has no boundaries, discipline, or raising. The kid could have a disease called Autism and if you have no awareness they you are dumb to the bigger picture so keep your mouth shut and mind your own business. If your opinionated enough to judge then be smart enough to get educated in the difference in tantrums and melt-downs.