I have some advice for you! Here are three things I would do differently as the parent of a child with Down syndrome:
1. Pay more attention to self-care skills
I didn’t pay as much attention as I wish I had to helping Penny develop self-care skills. I’ve never been great about washing my hands, and I didn’t do a great job of passing that along to our kids. I get impatient with all the grooming—hair brushing and face washing and nail clipping and so on. If there’s any place where I am tempted to jump in and overcompensate for my child who learns things at a slower pace, it is in this area. But now that Penny is 17, I realize how much of a disservice it was to not take the time to teach and reinforce all of these habits. (I’ve also realized it is never too late. We are learning many of these habits now!)
2. Attend parent/teacher conferences with ALL teachers
I didn’t go to parent/teacher conferences with all of her teachers. I used to talk with Penny’s case manager and special education teachers, but not the head teachers in her co-taught classrooms. Then, when conferences moved to Zoom during Covid, I decided I would just park myself in front of the screen and take my six minutes with each and every teacher. Those few minutes of interaction taught me to always meet with all the teachers if I can. The head teachers in these classrooms need to be supported in teaching kids with IEPs (Individualized Education Plans), but they also need to be reminded that their job is to teach all the kids in their classroom. When I meet with these teachers, I am able to remind them of Penny’s presence in their classroom with her particular abilities and her particular gifts.
3. Facilitate bike-riding skills
I didn’t sign Penny up for learn-how-to-ride a bike class. She fell off her bike when she was first on training wheels at age six, and she has never wanted to return to it. I’m glad I didn’t need to insist on bike riding for my own sake (there are certainly goals I have had for myself that underscore who I think I need to be as a mom and that aren’t really about her). But I now think that we gave up too easily, and I’m longing for a way for her to both join the family in an activity and move her body and get around independently. Once again, never too late! (We are looking into adult tricycles as well as flirting with the idea of the I-can bike program this summer. Stay tuned!)
More with Amy Julia:
- Book: A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny
- False Message: Disability is an inspiration.
- Free Resource: Missing Out on Beautiful: Growing Up With a Child With Down Syndrome
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