Nicky's Not a Boy, Things Have To Change - My Ah Ha Moment

The way I have coped with much of my grief, is to take one day at a time. I have held on to all hope and not created a future or a picture of Nicky that has not yet arrived. This has been the best approach for me. Not putting limitations on who Nicky will be has been a good thing but it also has a bit of denial woven in it. It has kept me from drawing difficult lines in the sand that acknowledge that we have to work toward the best, and we must prepare for the worst. A really counter intuitive thing for a mom. The worst is that Nicky will not recover from autism, and that my job is not to cure him but to help him manage it the best he can. That's been a hard journey for me. But reality has a way of always bringing life into perspective.

As I sat in a restaurant last week with Nicky and his therapist I watched another family in the booth across from us. In our booth was a 10 year old with autism, still young and cute making it possible for people to disregard his behavior. In the booth across from us was an 18 year old with autism, who displayed many of the same behaviors as Nicky. The behaviors don't look the same when they are on a young man and not a boy and that was a reality check for me. I've heard it before from his therapist and I've even said it, but at that moment the reminder hit like a ton of bricks. The borderline period is almost over. He won't be a boy much longer you have to help him before he get's too big. Nicky has to be able to always eat with utensils, he can't grab me, he can't continue to lift my shirt and push his ears on my stomach. He has to be able to greet people and use words to ask for what he wants, I can't say "Go Potty", I can't say "Nite Nite", I can't let him come and sleep in my bed at night, I can't let him pinch me instead of saying hello, I can't let him hit or pinch anyone he has to learn how to control himself and he has to learn to use the words he has been blessed with. We owe it to him to do the best we can to help him find replacement behaviors.

As much as I love how great he is doing with his school work (in part because it's the one place when he's like other kids) the truth is he still can't have a social conversation with his peers. So, the heck with school work, I don't care how much information he can memorize if he can't make any friends, or go into a restaurant and order food, or find his way to a bus, or make a phone call, or get help if there is an emergency.

So I went back to his team and his incredible sister and ranted about how we have to do better(we is really me) we can't afford to let a single teaching day slip by. I need them to stay on top of me, don't let me make any excuses for me or for Nicky. I need them to help me be strong. It's time for me to let go the short term worries of protecting him in exchange for the long term pain of having contributed to his restricted independence.

Suddenly the only thing that seems to matter today is how to make sure that Nicky has the skills to live in the world, because that's what he deserves from me. That is the legacy I can leave for him and Evyn when the day comes that I can't be here.