When Cody turned 18 last year we celebrated in a big way by surprising him with a trip to his favorite place, Walt Disney World. Just like with any child, an 18th birthday is a huge milestone, but if I’m being honest there was a part of me dreading it for Cody. There is enough to handle and carry on your shoulders when you officially become an adult, but for someone with autism it’s a different ball game entirely. Not necessarily for them, per se, but certainly for the people who love and take care of them. There are so many decisions to be made that don’t involve speech therapy or ABA, but instead things like where he will live and whether or not he will be his own guardian or if someone else will take on that role. As I type those words I’m overcome with emotion because in all my research over the past couple of years there is simply no easy way to take away your child’s right to look out for himself as an adult. It’s painful and gut-wrenching and involves standing in a courtroom and that’s probably why I’ve dragged my feet, which in the long run could only make things much worse for Cody. I’m failing him as a parent if I don’t push my emotions aside and do what is truly best for my son.
Cody is My Adult Son with Autism
The decision of where Cody will live is an easy one. Paul and I have always said he will live with us, without hesitation, just like I did this morning when I was asked that question yet again by yet another well-meaning state employee. We were discussing possible adult support services for Cody and the person on the other end of the phone asked me that question along with the one that I’m afraid to address because of the emotional toll it will take on my heart. The one about whether Cody is his own guardian. I answered “yes” and fought back tears as I admitted to knowing that we need to address it, but I’ve just been too overwhelmed with what it truly signifies for Cody. That while he is technically a grown-up now, he is realistically not capable of making adult decisions for himself and even though my head knows what is best for him and his future, my heart doesn’t want to let go of the hopes and dreams I had for him when he was a little boy. In so many ways this phase is much more difficult to cope with than the day he was initially diagnosed with autism, but I know we need to take the next step, no matter how painful the journey, because Cody is counting on us.
That sounds like such a complex responsibility you have on your shoulders, Cathy. I know you will do what is right for Cody. I know, too, the struggle over what you had dreamed was possible for your child vs. what actually comes to be possible. It’s so hard to let go of hopes and dreams.
Just remember you are doing a great job of addressing a very nuanced situation. These things impact you as much as it does him so allow yourself to address your own anxieties and not push yourself too quickly.
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Thank you for your kind words, my friend. This whole parenting gig is so heartbreaking sometimes, isn’t it?
Being a mom just never gets easier. You’re ALWAYS a mom. You always want to do what is best. It’s just never easy. Sigh.
So true. No matter what decisions we have to make for our kids, it is never easy. This one in particular is my most painful to date.