Different yet not-musings of an Asperger's mom

There are days when it honestly does not seem that my 4 year-old son has Asperger’s Syndrome. Perhaps that is how it is with many who have this high functioning form of autism. There are days when his conversation is like any child his age and he listens to instruction and can be caught looking at his baby brother with love as he is compelled to pull him in for a hug.

“I love you Dylan,” he says softly. “You’re so cute. You are my best friend.”

In those moments I watch from a short distance away and feel my heart tug. He gets “it”. He too is overwhelmed by his baby brother’s chubby cheeks and sweet smile…so much so that he must reach out and show him affection. There are days he asks questions about the moon and how snowflakes are formed and requests crackers in a precise number in relation to pieces of cheese he has left on his plate. He is making appetizers, after all. Pinky finger in the air as he pops one of his creations into his mouth, he deems them delicious, yet crunchy.

Almost every time AJ has a snack, even if it is a warm cookie or chocolate, he will break a piece off to give to his brother. It does not matter that his brother, chocolate smeared all around his lips, already had some and just eats ten times faster than AJ. AJ just seems to know the feelings going through his brother’s head, looking at him eating and wishing he had more…and he reacts with an open heart. He reacts with empathy.

He is thinking, wondering, pretending and planning. And none of this seems like an Asperger’s kid to me. I begin to question everything; diagnosis, therapies and sadly myself.

Then the next day he is stuttering at the start of every sentence, bellowing out random thoughts, chanting the same phrase over and over while he plays and is oblivious to any direction…including, “Please stop doing that.”

There is such a paradox in his condition and behavior that I can not determine if he is overwhelmingly brilliant and sensitive or will be lost, alone and struggling to get through college someday.

And I feel guilty. I am not doing enough for him, or I am doing too much as I did for my older children who are adults but still not as independent as perhaps they should be. I blame myself for coddling too much, wanting them to have a childhood for as long as possible because I myself did not have one. It is what I was doomed to do and sadly it is what I did, at least with my first two. But I am trying to do things differently this time.

So balance is key and I am not sure if I have achieved it. They do not come with manuals. A Reiki practitioner I saw while pregnant with AJ said she felt he would be “unique”, artistic and sensitive…the kind of person who can change the world, and her words have been about the only thing I have taken to heart.

Every Asperger’s child is different. Mine is no exception. I struggle with patience as I ask him to get his coat on for the tenth time and he instead runs around the room proclaiming he is Buzz Lightyear. I fight to keep my sanity as he sings, “Olivia...Olvia...Olivia” in a song that does not end for 20 minutes. I fight back worry as I see that my little boy who would eat anything is now limiting his food choices to things that “feel right” in his mouth. Texture is a big thing now. Luckily, raw veggies pass the test.

In September, a school bus will come and stop at the end of my driveway and I will watch my baby take the first real steps away from me…and my protection. If he still is stuttering at that time, some kids will be mean, as they always are, and I, having raised two grown daughters, am feeling extra protective because I know how hard it is to ride that bus each day. It wasn’t easy for me, it was worse by the time my oldest children jumped onboard and I can only imagine how AJ’s school years might feel. And other than working with his therapist on speech and his preschool for socialization skills…I don’t know how to make it better. Kindergarten will be challenging for both of us I think.