We sought the help of anyone and everyone that could tell us what had happened and how to fix it. When we heard the word Autism for the first time, it was like my world had been made of glass and with one word, shattered into millions of tiny pieces, never to truly be put back together.
We learned that Gavin was very rare and that he may continue to regress (which he has). I will never forget that feeling or that moment. I thought putting a name to what had happened would make it easier, but it doesn’t, it just gives you something to hate. For those of you out there, that for some reason consider Autism a blessing, I’m sorry if this offends you. I hate Autism. I hate Autism with every ounce of who I am.
However, let me say that while I hate Autism, I draw a very distinct line between Autism and Gavin. Gavin is my son and Autism is the force that has censored him, for lack of a better word.
As the years went on we battled this force, this Autism that had taken him from us. During this battle, we have discovered other forces at work as well.
Gavin has been diagnosed with Schizoaffective disorder, Pica, ADHD, OCD, PTSD, Sensory Integration disorder, Psychosis, Primary Immunodeficiency and a yet to be identified Degenerative Neurological Disorder.
Honestly, this battle has come at great cost and has been largely fruitless. It seems that no matter how much we pour into Gavin, not much seems to really stick. We have seen countless experts from Akron Children’s Hospital to the Cleveland Clinic, however, we are left with more question than answers. The only consistent thing we hear is that no one has really ever seen a child like Gavin. I can’t tell you how frustrating it is to hear that over and over and over again.
When it was just Lizze and me, we were the only ones that paid the price of that fight. Now we have Elliott and Emmett to worry about as well. All 3 of our boys are on the spectrum and all unique in their own way. Elliott is very high functioning Aspergers. Most people would never know he was an ASD child. He does, however, have a ton of anxiety, and as of late, has begun to struggle a bit. Elliot has nightmares because of the scary things Gavin tells him.
Emmett is pre-verbal and significantly developmentally delayed. As such, he has limited ability to communicate and is also a sensory nightmare. His world is very difficult for him to navigate. We are involved heavily with early intervention and are currently battling the school system on his behalf.