Preparing for my son with autism's adult life

This is a post by Kimberlee Rutan McCafferty, author and mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). Kim is also the author of a blog about her two children with autism. And the author of the book called Raising Autism: Surviving the Early Years. 

Dear Justin,

My dear boy, you’ve recently rounded the corner into adulthood, which is still a difficult concept for me to grasp. It was just yesterday that I held you tightly as we danced around to your favorite tunes in your nursery in our little house in northern VA, oblivious to the world. To say there have been ups and downs in your childhood would be the understatement of the century, but I feel in my soul there has been mostly good there. You have grown into a loving and predominantly happy adult, and for that I am eternally grateful.

There were months, no years, I thought we’d never get to this place.

Eighteen is a real reckoning, just like twenty-one will be years from now. Your dad and I are in the process of acquiring guardianship over you so we can make important decisions on your behalf, and we are wading through the morass of Social Security, the DDD, and Medicaid to make sure you receive all the benefits you are entitled to. Several years from now we will be choosing a day program for you, an agency and a coordinator, and eventually a residential placement where you will hopefully live not too far from us.

It’s this latter decision that gets me every time.

You see my son, I know in my heart that someday you will live apart from us, that this is a necessary and even a good thing. Myself and a few of my friends are trying very hard to secure a safe place for you, one where you will have good caregivers and maybe the opportunity to work, and hopefully lots of fun. I know your dad and I have to place you there because try though I might I won’t live forever, and I certainly don’t want my demise to be what precipitates a drastic change in residence for you. No, I’d see you settled earlier rather than later, have the kinks of placement worked out, make sure you’re thriving before I depart this world.

One thing before I go however my son- I just desperately wish you could tell me how you feel about all of this.

You see, when I contemplate your future away from your family there is both a feeling of peace and of guilt that co-exist. I don’t know if you’d like to live out your burgeoning adulthood with us, or if you want more independence without us. I can ask you many questions and get the “yes or no nod,” but not this question. This is too complex a topic to be able to rely on that subtle shift of your head, and I know I’ll never know the answer. To be honest, the hardest part of placing you for me is the worry you won’t understand why, that you won’t comprehend that your dad and I won’t be here forever.

It hurts my heart to think you won’t understand.

And yet, I have to remind myself of how many things you’ve adapted to brilliantly over the years. New teachers, and a new school building. Losing seeing your favorite people for over a year. Not being able to frequent your favorite haunts.

This past year there has been a ton of change for you, and you have conquered it all.

So in the end I know we simply have to continue to move forward. I know I have to do my best to create a continuation of the good life you’ve had at home and at your school, continue to find things that delight and challenge you in the years to come.

I need to let you go, just a little.

I have to hope the choices I make for you are those you’d want too.

I’ll always wish I knew for sure.

I love you.