I walked out of the train station today on my work analyzing every male face I came across. What was he like as a child. What does he deal with now. I find myself doing this as I wonder how A will be when he grows up. I've though a lot about this lately. What inner demons will he have to battle? Will he grow up and find love? Will he drive a car? Hold a job that he likes? Will my husband and I be able to go away on a vacation without worrying? And will R be able to take care of him when we are no longer able to?
Its a heavy burden I have carried on my shoulders since his diagnosis. It's the unknown. And my shoulders are tired.
I always tell my A that no matter what happens today, we can start off fresh tomorrow. It has become our mantra, a way to get through the difficult days and know that they won't last forever. It's also a comfort for me. That at the end of the night, when I lay my head on the pillow and drift off to sleep, I get 8 hours rest from the worry.
Lately his diagnosis feels new to me. I've started over with the research on how we can help him live his best life possible. I may not have a PH.D but I have studied more about autism then anything else in life. Research papers, case law, medicinal trials. We medicate, use essential oils, take probiotics, ABA therapy....you name it, I have tried it. It consumes my thoughts most of the time where I feel like there is nothing else.
And then their is sadness. A is a smart 8 year old. Smarter then most I'd say. He knows that he doesn't have friends because he scares them. Because who in reality, as a child, wants to watch a boy bang his head off a wall and think "that's normal". He's quirky with no filter. He will tell you exactly how it is, out loud, no indoor voice. Most people find that rude and insulting. I am just happy he is communicating.
When we received A's diagnosis of "moderate ASD", I knew it was spot on. Other kept saying "oh he's high functioning" and "he's so smart, he will grow out of it". You don't "grow" out of autism. You may learn coping mechanisms to get through life. The reality is, A can be high functioning when he has had his daily medication and all the stars have aligned. We love these days because his brain gets a minimal break from the anxiety of life and my brain gets a minimal break from the daily worry.
And then I think of our mantra: "There is always tomorrow".