Monday, January 20, 2014

The Roller Coaster Up

Tonight I will pack my son a lunch in his brand new lunchbox for the first time. I will put in his favorite snack, a sandwich I hope he'll eat, and a cookie, because I know if he eats nothing else he will eat that cookie. I won't be there tomorrow to make him something different if the texture of the sandwich doesn't fit his needs, or if the smell is somehow different. I won't be there to sit him on my lap and help him eat if he's disorganized. I won't be there.

I wasn't prepared for that lunchbox. For picking it out and ordering it. For opening it and making sure all of the food containers fit neatly inside. For explaining to his twin sister that I didn't get her a lunch box because she still gets to eat at home.

Tomorrow a bus will come and pick up my son and drive him to school. He will start a new life that involves spending 35 hours a week away from me, with someone else driving him to his new destination. And I wonder, did I give him enough of a platform to jump from? Will they continue to help my baby develop into the sweet and tender little guy that he was on the path to becoming? Do they know how often he needs hugs and high-fives? If I tell them, will they remember?

Ryan's school is a good one. I hand-picked it after months of touring schools and interviewing staff. It is the right choice for him. For all of us. He is ready. He has plateaued at home and gotten as far as he can with home- and community-based therapy. Now he needs to go to a larger, social learning environment and learn how to generalize his skills. Learn how to keep his language in a crowd of people. Learn how to cope. And he's ready to do all of these things, with help.

But I am not ready. I am not ready to send him out without me. To lose him for all of those extra hours. To trust someone else to guide him and teach him. I am not ready.

I am so, so angry, but I have nowhere to put it. And underneath that anger is a wave of grief so large that when I let myself feel it, I am sure I will drown. I am a fixer and I can't fix this. I can only wait to see what happens and hope. The waiting kills me.

I have theories -- not taking always my folic acid when I was pregnant, the CPC's they found in his brain when I was pregnant, the genetic possibility. I may have done this to him, I may have caused this.

I have guilt -- that I didn't fight harder to get him services when he was screened at 15 months, that I didn't see this sooner, that I didn't know what to look for, that I didn't question the people who were the supposed experts when I knew they were wrong.

I have grief -- that he may never have a wife and children, that he may never have a true friend, that he may only learn the social expectations we have for him and imitate them and not truly have a conversation that makes him laugh so hard his belly hurts.


He has so many skills. Joint attention (the ability to socially reference others to follow instructions or see how to do something), eye contact, the desire for approval, seeking out affection, spontaneous and appropriate language, pretend play, imitation. So many good things. But the last few weeks, with the break in his routine, he has been the worst I have ever seen him. Hand wringing, facial ticks, verbal stim, teeth grinding. He got a sinus infection and I noticed that with his illness he started to rock himself. Several nights this week, his disability has been so evident that I have excused myself from the dinner table to go upstairs and cry.

Our therapists, who came to our house for the last time on Friday, have told me that Ryan's skills are so high and so hopeful. They have reassured me that it is unusual for a child on the spectrum to have so many typical skills. They have consoled me and told us what a good job we have done for him so far. They have shared with me that he is one of the smartest children that they have ever come across. That his photographic memory will help him learn so quickly.

He learns skills in a day and generalizes them within a week, which is often a several month process for other kids.


We are at the bottom of the rabbit hole looking up. With this next transition, we have further to fall before we can start to climb our way out. I am hoping that there is, somewhere, a way out.

I have put all of my expectations on hold to wait. The horrible, miserable waiting. I don't want to wish his life away. But I want to fast forward to the ending. To know how this turns out. To feel that it will be okay. This will be okay. Instead I sit holding my breath. Waiting. Holding.

I am thankful for the starting point he has been given, I just wish I could give him more. Actually, I wish I could just make this go away. Or take it myself. I would gladly take it myself. Every day it kills me that I can't fix this. I can only hope and wait.

And, in the meantime, I can love him.

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