This mom encourages parents to practice self-care
By Kimberlee Rutan McCafferty | June 7, 2019
This is a post by Kimberlee Rutan McCafferty, 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. She is the author of Raising Autism: Surviving the Early Years available on Amazon
I have a confession to make to all of you, although for those of you who know me, this won’t come as much of a surprise.
I, Kimberlee McCafferty, am a planner.
Perhaps I’ve given myself away over the years, as when I mentioned at Justin’s IEP meeting when he was seven that I really wanted a plan that would keep him happy for his eighty years on earth, or how I’ve been talking incessantly about his post-graduation life which is still five-and-a-half years away.
We all have our strengths.
In fairness to me, much of this strategic planning initiative stemmed from my son’s recent eligibility meeting, where an administrator from his school confirmed for me what I had dreaded hearing this past fall- that my dream of putting him in his school’s post-21 program, for various reasons not relating to him, may not come to fruition.
That dream was right up there with an entire childless weekend binge-watching “Sex and the City” with martini in hand and never getting out of bed.
To be honest with you, it takes a lot to break my heart these days, but this one really gets to me. You see, Justin loves his school, has been a student there since he was seven. They are amazing to him, love him and get him. Since there’s no age limit that I know of in the post-21 program I had hoped he’d remain on campus for decades to come, not just because that would give me some continued semblance of freedom (although that heavily factors in) but because even without him telling me I know it would be his first choice of how to spend his adult life.
And for anyone who wants to argue with me asking how could I possibly know that? I will respond with, I’m his mom.
I just know.
And believe me, I know, graduation is still over five years away, and as I look back at the last five years I am reminded that anything can happen.
And it usually does.
To tell you the truth however, I’m glad I know this now, and not four years from now when I’ll start looking at day programs for my boy who likes to be out of the house and kept busy. It’s actually forced me to reflect not only on Justin’s life and his projected adulthood- it’s forced me to stop being so complacent over my current life, and having time to do things.
While none of us knows how much time we have I also know this. That most of my friends with adult autistic children had a six month gap from the time they graduated until the time their services kicked in. I know that a post-21 program is not an entitlement- if he can’t handle it for any reason, he’s out. I also know that if we try in-home respite I will spend the better part of my life continually searching for decent, caring hard-working people to fill the respite role. In other words, who knows what I’ll be able to do when his school entitlement ends.
Truly people, I’m living my retirement now.
So I’m putting this out there for those of my brethren who are five or six years out from watching their child graduate. I’ve still got a few years before I have to encounter the labyrinth of guardianship, SSI, and Medicaid. Right now Justin is fully successful in his school program, and short of snow or illness I can count on him attending there his wonderful 210 days a year. My Mom is still young and game to help babysit wheever possible, and there are a lot of things I’d still like to do when I can.
And it’s up to me to get my butt in gear and start doing them.
Some of you with teenagers on the more severe end of the spectrum might be reading this and thinking that “fun” is not exactly your first priority now, as you may be dealing with all sorts of challenges with your child. Believe me, I get it. I’ve been there too.
But while you’re dealing with all these challenges remember this autism journey is a marathon, not a sprint. You have to take care of you so you can take care of them.
So make those dinner plans and stick to them. Have a certain location on your bucket list? Visit it now.
Have the fun that you can while you still have the relative freedom to do it.
And as I plan out my “2019 fun” for the year, I’m taking my own advice and running with it.