Susan's Blog

Thursday, October 20, 2011

When the clock strikes 22

What can we do about the depression we get when we have to contemplate our special needs child’s adulthood? I was trying to get at why there is so much grief, so much more than when a typically developing child grows up. I am not completely sure why the deeper pain in the former case, but I believe that it has something to do with both the fear of who will take care of him as well as the feeling that something is over.

It’s easy to understand that more obvious fear, the questions “What will happen when he’s an adult?  Who will take care of him when I no longer can?” In some ways, this question is easier for us to deal with because we can do what I did: throw ourselves into the planning and the research, and so control the fear with action and activity.

I’ve written a lot about the kind of planning, problems, and discoveries I’ve made so far in my quest for Nat’s group home and adult care set-up. I don’t think I’ve written much, however, about the underlying issue of the other issue of amorphous grief. But yesterday, when that Allman Brothers’ song “Melissa” came on, I found that the tears were about to break through. You’d think I would have clicked forward to the next song, but being me I made myself stay with it and try to figure some things out.

I was thinking about Nat’s impending graduation, November 11, and what it would be like. I saw him standing there in front of all those people – should be quite a crowd because twenty people are coming whom I’ve invited, and then there’s the school personnel and students. Nat’s teacher thought that a lot of teachers would want to go because Nat has been there so long and because, well, this is Nat we’re talking about and he is a very special person; the beauty of his face when he smiles just fills you up.

Ned says it will be a very emotional day. I’ve been focusing on the cake. This is more of the same as I mentioned above, I focus on the part I can control. But the moment is coming, oh yes it is.

I’ll be emotional because it is the end of something huge, Nat’s boyhood, Nat’s days as a student. The protective bubble of school routines, popped. But my planning about the future has made it so that at least I have a good picture of where he’ll be living, and what he’ll do with his days. So I highly recommend taking on some piece of the planning and research, every time you start to get the shakes about the future, because it helps refocus your mind. You can work on what will be.

As for the grief that remains, well, it may be about what was not. Maybe 22 is partly about facing what didn’t happen. He never did catch up to his typically developing peers. He never did learn about the Constitution, multiplication, etc. He is not going to college. He is not.

But then I see him in my mind’s eye, wearing the cap and gown, shaking his teacher’s hand, and grinning his face off, and I learn, for the millionth time, that he is.


It will be beautiful, and sad, and joyous, and just everything. Just like he is. Congratulations Susan and Ned, I hope that you enjoy all of your hard work.

— added by Penny on Thursday, October 20, 2011 at 6:50 pm

Thank You. Your honesty is convicting and your grief is validating. I have learned so much from you. Keep writing!

— added by Timmy's Mom on Thursday, October 20, 2011 at 7:00 pm

Well said, Susan. It’s like realizing at age 16 that he’ll never get his driver’s license. Hard to reconcile, especially when siblings meet those milestones. Then we tinker around and find other things to feel good about and somehow it’s not so raw.

— added by Caryn Sullivan on Thursday, October 20, 2011 at 7:30 pm

simply and beautifully put, Susan. thanks.

— added by jessica on Thursday, October 20, 2011 at 10:26 pm

Susan, I will miss running into you at the May. You have helped me so very much since the very first day I read one of your posts years ago. I will continue to read your blog, and learn from all your leadership as a comrade in the trenches of autism…hugs and blessings to you, your family and most of all Nat.

— added by Candy on Friday, October 21, 2011 at 9:03 am

Thank you, Candy. It’s been a good experience for us there, and you’re a part of that.

— added by Susan Senator on Friday, October 21, 2011 at 9:17 am

You really hit this. I didn’t even realize that the loss of boyhood was part of this. Thank you for naming that aspect of letting go. It makes me realize why I’ve been SO emotional lately about all this. I have done so well for song long handling things, it’s been surprising to me to have all these emotions pouring out. Because I haven’t cried in *years*. Grabbing my hankie now.

— added by Round World on Saturday, October 22, 2011 at 8:54 am

This was so beautifully put. Congratulations to your son and to your family on such a wonderful accomplishment! I pray that you have a beautiful day of celebration when he graduates, and every day after that.

— added by Allison@benotafraid on Monday, October 24, 2011 at 1:05 pm