Realizing I need help with my autistic son's high support needs

"I will always help you live your best life. The landscape of that life will change, and I need to be on board with that."

By Kim McCafferty | October 25, 2021
A young man in an orange shirt looks at the camera while standing on a sandy beach

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. 

Dear Justin,

This past week I took you to the Point Pleasant boardwalk with a friend, hoping we’d harken back to times of “yore” when everything went smoothly and we both enjoyed ourselves. You see, my son, our last few trips there have been quite stressful, and despite using my “bag of tricks” with you I’m not comfortable taking you there alone anymore. There are just certain attractions that your aging mother can no longer tolerate, but sometimes there is no reasoning with you and your implacable will. When you want something, you want it.

And all the social stories in the world aren’t going to change that.

We’d had two bad experiences there recently but I was hoping the third time would be the charm, plus your mom is ridiculously stubborn. I loathe to give up a pastime that we’ve been able to do just the two of us for fifteen years, and I was hoping your behavior was just a blip on the radar, nothing permanent.

I quickly found out that despite my own implacable will to get you out in the community, you had other ideas my son.

I had help with me so it wasn’t that difficult to get you back to the car when things went south, yet I was still left sweating and filled with regret. This used to be one of our easy trips, occasions where if I said “no” to a ride you’d listen without complaint; you were just happy to be out of our house.

I’ve noticed since we’ve been going out into the world post-COVID you are asserting your wants more now, and I understand. We had fifteen months of pretty much being in lockdown chez McCafferty, and there are things you want to do, things you want to see. I get it.

The only problem is, you can’t have your way every single time.

We’ve been in this situation before. I remember taking you and your brother on the Great Adventure safari years ago, and listening to your low-grade whine throughout the ride in our car. I recall that for perhaps the first time I wasn’t kvetching that you were annoyed. You were safe, hydrated, and inconvenienced for an hour so your brother could do something he loved. For once, I wasn’t upset that you were unhappy.

I remember feeling liberated.

Now you are bigger than me - taller, and you outweigh me by a few pounds (if I haven’t had too much ice cream recently). I can no longer negotiate or block you from your chosen path by myself. I simply don’t have the strength.

But I do have the strength to learn to let go.

The truth is, it is no longer feasible to take you back there alone. There may be more trips in the future with our family friend and perhaps the BCBAs from your school when that program starts up again. I’m not ruling out the boardwalk entirely.

I am, however, letting it go for just the two of us. I’m acknowledging that now that you’re older I may be letting go of other things too.

And letting go is okay.

I will always help you live your best life. The landscape of that life will change, and I need to be on board with that.

I am trying.

I love you, my boy.

Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about autism as a service to the community. The information provided on our website is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. Autism Speaks has not validated and is not responsible for any information, events, or services provided by third parties. The views and opinions expressed in blogs on our website do not necessarily reflect the views of Autism Speaks.

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