While A2 is the most fun loving, joyous person you will ever meet and lovess to be on the go–like many children with Autism he struggles with extreme boredom since he requires adult intervention to choose, initiate and maintain activities. His explicit expression of wanting to play with other kids is emerging but often it leaves him alone knocking on the back door window as he watches children playing unsupervised across the street.
I often have a sense of impending doom often to no avail. I have had this most of my life, but could not qualify it until young adulthood. Yesterday, I had an epiphany–of what it might be like to know A2 for just 5 minutes…..5 minutes without his yoke. What A2 could have been like, but is not because I refused to take an antibiotic with bronchitis while pregnant, or didn’t eat organic meat or lived in the toxic dump of Nevada people call Las Vegas…..I came to this epiphany of what this situation might be like with an overwhelming sadness. I had never considered it before and I don’t know why 5 years into his life I considered it yesterday for the first time. The thought of what could have been is painful, not happy like you might think–he is such an amazing little guy–so happy and curious, talkative and friendly. He owns his fears and loves like I haven’t seen anyone love. I used to bombard myself with the idea that he wouldn’t be as exceptional if he hadn’t been born with that single palmar crease, bent pinky, faulty mitochondria or broken brain. These are the things that make him who he is. He is warmth and light at its best. Words and logic will kill the pure instinct of trust and love, just like it does for the rest of us. But alas, not so. When I think of A2 for 5 minutes speaking and acting like his friends, his potential overwhelms me–I see the pure love and joy and trust, but with a little boy who has friends and uses the toilet. He tells me with his words how much he loves me and his words tell a story not just his eyes and volume as he jargons and gestures as he gets in the car from school. I think this thought took me over the edge. I took a Xanax to help me sleep, forgetting that sometimes while it takes the choke hold off of my consciousness it releases and then smacks me in the face with a vengence in my sleep. I was bombarded by nightmares. Nightmares of people I know–I never dream of those I know….nightmares of being separated from my children….my children who need me….NEEEEEDD MMEEEE….children who have special foods they must eat or else they will get sick or starve, children, who, when lost can’t find the nearest grown up to tell them their name and where they lives and how to find me. Children who need diaper changes and hugs to stave off fears of the cord that hangs from the garage door opener. Children who use me as their communication device. Children who trust others so much that they jargon at them unfettered by concern that they are not understood. I won’t let anything happen to A2….not on purpose. But on these days, these days with my head bobbing slightly above the water—instinctively taking breaths instead of screaming for help, I realize that impending doom is here….whether A2 is lost or not.
I have been mulling over starting a blog….for a very, very long time. It would serve as that teachable moment to those who cannot be taught. Not just the special needs parents who needed a place to connect, but also to those friends and families of special needs parents. They would log on ever so often and have an “aha” moment. They would have greater empathy for those people…they would know what to say, and I, through my words would change the way society treats kids with special needs. This has pretty much been the way I have attacked Asher’s apraxia. Somehow….if I just went to every speech therapy appointment, every seminar….dragged his talker to every location, I would save him from what lie ahead. Completely unrealistic…fantasy peppered with hope.
This blog is about Asher’s journey….While he remains blissfully unaware of his hurdles, I watch him as if he is running through water. It is slow and arduous…he is frequently knocked down by waves and riptides. The occasional jellyfish swims by and stings him in the leg for no other reason than it is a jellyfish. He’s lost an arm floaty. It is hard to watch your child struggle and feel at any moment he might go under…but he hasn’t yet and while the lifeguards sit in their red suits on the shore I often wonder if they will make it to him in time if he falls and doesn’t come up for air.
Enough drama. Some days I am funny and sarcastic….some days I am dramatic. This is a drama day–a day of writing where obviously I do not draw on my creative writing background….more to come……
Running through Water 