“What percentage of a plan do you have?”
“I don’t know, like 12%.”
–Guardians of the Galaxy

Last month as we were decorating for Christmas, my son told me, “When I grow up, I’m going to have a Christmas tree.” I was floored. It wasn’t that the sentence was grammatically far beyond his typical speech.  It was this: even though he’s 12, it was the first time I’d ever heard him talk his future.

My son has a developmental disability. He needs lots of help doing everyday things, like getting dressed, eating, and cleaning up. There are also lots of appointments with doctors, school and services to coordinate and attend, as I showed in my care map. So most of my focus as a parent is on the present—putting one foot in front of the other to get through the day.

I have a hunch that I don’t spend a lot of time in the past, confirmed mostly by the way my jaw drops when I look at baby pictures of my son and my other child, who is 10. Were they really that small? Did that really all happen?

The future, too, has been neglected, more because it’s a scary place. Parenting without a diagnosis, then with a rare one that includes developmental disability and little in terms of evidence-based treatment, the future seemed as quiet, dark and void as outer space. Everything I take for granted parenting my typically developing second child was a question mark when it came to my son. Would he survive into adulthood? If he did, would he be healthy? Would he be safe? Would he be happy? Would he be independent? Would he fall in love? Would there be someone to look out for him after I died? Exactly the kind of thing you feel like thinking about after the kids go to bed and the dishwasher has been loaded. Not.

The normal questions I pose to my other child just don’t come up with my son. Ones like “What do you want to be when you grow up?” and “Where do you want to live?” or “Where do you want to go to college?” I didn’t mean to skirt them, but somehow, the busy-ness and the fear just got in the way. To be fair, we had gone through a vision-writing process with the help of some other parent advocates a few years ago, and the resulting insights played a role in little things going to a model train expo as well as big things like our decision to move half-way around the world. So I’m not a total deadbeat. But most of our planning has centered on the current school year or evaluation period, with some generic vision statement about my son feeling that he belongs and has a meaningful life that we cut and paste when needed.

Recently I’ve felt the need for a more specific vision around early adulthood. The countdown to adulthood begins early for kids who need lots of time to learn and prepare. It’s time to make tough choices about skills and goals. Where should he spend his time and effort? Is it important that he learns to read, or is it a better use of his time to go the store where he can practice social greetings, handling money, and navigating his neighborhood? This kind of parenting isn’t for the faint-hearted.

What will be most important for him in terms of the life that he wants to lead? At some point, this has to be less about me and my dreams and more about him and his. (Another wonderful gift that special needs parenting dishes up for the willing.) Creating a plan for the future means letting go of what matters only to me and embracing what matters to him.

Planning for the future can be a lot of things. It can simply be daydreaming about what lies ahead, or it can be a facilitated person-centered planning process that results in a document shared with others. I’m ready to do both.

So far I know my son will probably live together with a few other people who also need a lot of help and who want to play a lot more XBox than I do.  There will certainly be an iPad involved. And keys. Most likely a dog. And definitely a Christmas tree.

Stay tuned! And send your tips.

Published by Cristin Lind

Facilitator, consultant, speaker for better health and care through patient-professional partnership. Passionate about helping change agents build courage and agency. She/her.

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  1. Oh, how I love your posts and insights! So parallel to my journey with Jeremy (18) here in Fenelon Falls, Ontario, Canada.

      1. Working on it (Housing, “Career”…, filling days with happy and proud activities. With the right people). Fortunately Jeremy can still go to school till 21. If he had his way, he would be a Garbage Collector. He has been practicing his finesse with tossing empty bins back after emptying them (loads of youtube footage to model this) when he does his recycling detail at home. Unfortunately, the workplace would be pretty dangerous for him (moving vehicle, speed required…) but maybe I could find just the right situation and mentor/protector for him…

        1. You never know! I continue to be astounded by the generosity and humanity of individuals out there who want kids like ours in their lives, at their workplaces, in whatever unconventional way works.

  2. Thank you for your post. I am always moved by your posts to many thoughts and at least a few actions. And I thank you for that.

  3. Your thoughts always inspire and uplift even after 36 yrs. of having a developmentally disabled child. I remember very well realizing my child would never be able to live alone… Alone a very daunting word for so many reasons. But with baby steps and careful planning hopefully with support our children will always be happy and cared for with those who value and respect their lives.

      1. Inclusion is the start, and exposing my child to the world and the world to my child even though at times it may seem painful.

  4. Hi Cristin,
    I’m on the marketing team at The Michael J. Fox Foundation, and I came across your blog. I think your care map idea would also apply well to people managing Parkinson’s disease care, and I was wondering if you would be interested in sharing a guest blog post on our site. If you’re interested, please shoot me an email.

    Thanks, and I hope to hear from you soon!


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