Accepting the challenges and being our best selves

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. 

The reality hit me from the email I received from Justin’s case manager yesterday. It included a letter introducing herself to the “newbies” in our town who are sending their children to Justin’s private autism school for the first time, and a reminder to the “oldies” that fortunately she would be sticking around again this year. I almost missed it as my eyes quickly went to the meat of the message to make sure she wasn’t being replaced, but eventually they returned to the top; under “student name” the words “grade 12” were prominently placed.

Grade 12. It is Justin’s senior year.

When I was carrying him, this really isn’t how I thought it would go.

Of course, six months ago I didn’t think we’d be embroiled in a world pandemic that would last six months and have no foreseeable ending, so maybe my powers of prediction aren’t that strong. I will tell you however that I never thought the child I was carrying would be spending his senior year in an autism school, not contemplating prom nor SAT prep nor driving.

Perhaps I don’t miss the latter quite so much.

There are people in the community who would berate me for missing these things almost two decades after his birth, perhaps lamenting that I don’t accept and revel in him as he is. Frankly, I say that is ridiculous. We are so connected, this child of mine who made me a mom. It’s okay to be sad he won’t have those choices, because for me it’s really about the lack of those choices, to love, to learn in college, and to drive to his girlfriend’s house. It is okay to wish he had these options.

I have shelved these realities, but I admit I haven’t shelved them all. I will never be at peace with the fact that I most likely won’t be here his whole life to love and shelter him, to keep him safe. Will he have a brother and cousins to help him carry out that sacred task? Absolutely. Will it ever be enough to give me peace of mind? Absolutely not.

That ache, that worry and concern, will never fade for me.

I have found over the course of our lives and all our adventures for seventeen years that probably some of the biggest factors in having a safe, happy and productive family are being able to admit fears and concerns, accept your child’s strengths and challenges, and taking small steps constantly to solicit their best selves. If you can do those things while simultaneously being kind to yourself as you work through the myriad of challenges you will face as a family, you have a much better chance at a safe and happy family.

And at the end of the day, that is what I always wish for.