Last fall I went to a conference on Preparing for Transitions to Adulthood and Beyond… with Michelle Garcia Winner. I just love the work she is doing with Social Thinking: I love the work this enables me to do with H and other children and families with whom I work. A couple of things really struck me during her presentation and I will share here what I shared in a letter to Michelle a few weeks after the conference:
“I was so struck by what you had to say about grit and about being able to handle the uncomfortable. It certainly gave me lots to consider – especially as I am also the parent of an amazing 11-year-old boy on the autism spectrum. I think we will go forth with more careful consideration and caution about enabling and disabling, and the messages I give about handling discomfort.
I also had a wonderful experience this week in working with a family to plan for their son (who is nearing adulthood) who is one of my students. (I have students K-12 on my caseload) Anyway… I digress… (follow the thread if you are able – yikes!)… I was sharing with the mother of this young man what you had to say about “Success being measured by graduating from high school with mental health intact” and about “Maturity being the friend of the person with ASD.”
It was so moving to see how thrilled she was to hear this, her shoulders lowered perceptibly and I could tell that she felt a rush of relief. That the words were yours had an even greater impact. I could see that sharing this gave her renewed confidence that she was (and had been) making the right choices for her child.
I said, “It is fine if it takes him longer to get where he is going – he will be an adult for a long time…”
She hugged me at the end of the meeting. Michelle, you gave me something so powerful to pass on to others – and I thank you for that.
It was only later, when I got home, that I realized how much your message is a comfort to me as well. My shoulders are perceptibly lower this week too.”
My experience and observation is that parents of children with autism (and other challenges as well because this is by no means meant to be exclusive) face huge stresses on a daily basis and also the ongoing stress of worrying about the future of their child. I can be hard to remember to breathe when you are tired and feeling brittle – like one more thing will have you shattered into ten thousand pieces. It can be hard to let go and just relax – to let your guard down – when you are braced for the next unexpected event that sends you reeling and sets you back from your intended goals or vision or expectation of where you wish you were headed. We are incredibly strong and incredibly fragile – and although it sounds contradictory – both are mixed together.
It is so hard as a parent, any parent, not to worry about our children. I get that. I worry about my non Autistic daughter, and I worry about my son. But the worry about my son is different. The worry for the parent of a child with challenges like those on the autism spectrum (and additional co-existing conditions such ADHD, Tourettes, anxiety, sensory issues, etc) is somehow more far-reaching. I look to the future – and wonder if what we are seeing this day will always be. I measure each action and reaction with the hope that we are building what H needs to be as successful as possible and have good quality of life as an adult. I worry about what happens when I am not around… and when someday I am no longer around.
Messages like the one Michelle Garcia Winner has given, about maturity being the friend of our little guys (or big ones) are the kinds of messages that give me strength and remind me that time is on my side. Right now- at age 12 (yes – H was 11 when I wrote the insert) my son is a social match for children 2-3 years younger. He lacks the social sophistication to keep up with the shifting social dynamics and complexities of his 12-13 year old peers. However – if he keeps pace – albeit his own – by the time he is in his 20’s this difference will be almost imperceptible. To assess someone who is 25 as being immature or unsophisticated because they are acting more like a 23-year-old… well… it’s likely not going to be an issue!
At this moment, I am finishing up my writing at a coffee shop with my boy. He is working on Fast forWord, and I am blogging. We have a few minutes stolen minutes for a coffee and cookie before I drop him off for a session with his tutor. When we arrived, we quickly discussed which table would suit both of our needs. We chose a table with one chair (because H needed an electrical outlet…) and H put down his computer in that spot. Then without prompting, he approached another table and politely asked the gentleman seated there if the chair was being used and if he could please take the chair. He spun back to our adjacent table, and matter-of-factly stated: “Here Mom, I got you a chair.”
The multiple aspects of Social Thinking that went into that move merit consideration. He was thinking about me and thinking about how to solve the problem and thinking about how to interact with others. He is by no means at 100%… and most 12 year-olds are not. In this moment however he was definitely ++100%. I see little things (that are, in reality, HUGE) in this child of mine that give me such hope.
The important point I think, though, is to remember that we don’t have to know the whole future for ourselves or our child… just the very next step…
Time is on our side…
And hope is in our bones…
30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.
© Leah Kelley, Thirty Days of Autism, (2011)
You’ve essentially nailed it once again! I will be passing this one along to parents and colleagues as well. Such a critical message for those who are struggling, and I appreciate your idea that “time is on our side.”
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Thank you so much for your insightfulness. We all need some reassurance, and the future is what l worry about most. My son is about to start school and l can see how much he gets along with kids a little younger than him, this doesn’t worry me one bit because l know he will arrive to his destination eventually. I love following your stories, they are the highlight of my day.
Thank you so much for your thoughtful comment. Even though there are bumps along the way… I think you are right about keeping the idea about progress in mind. It is not how our children progress in comparison to others that is the critical point… it is that they are still progressing. The time frame is in many ways an artificial imposition – and we need to be able to let go of that sometimes…