Musings of a Marfan Mom

Kids, Self-Advocating

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I believe that self-advocating is vital to people with disabilities, in whatever way they can, and that parents should start finding ways for their children to do so from a young age. Obviously, this is going to look different for every family, but I’ve seen firsthand the difference in teenagers who feel confident in handling their care, and how that affects their self-view, as compared to teens who don’t. So, this idea of allowing the boys to slowly take over aspects of their care has been at the back of my mind before they were even born.

Sometimes as parents we can underestimate our kids, and I was very guilty of that yesterday. Learn from my mistake!

In our church, children’s Sunday school classes are done by birthday. Classes change the first Sunday of January. From 18 months to 3 years, children are in nursery. Everyone who is 3 on Jan. 1 start the children’s Sunday school program. When M started the program last year, I spoke with his teacher before the first class, just to give her a heads up about his diagnosis and specific needs. I also introduced M to her ahead of time. Makes sense, right?

I did the same this year. Called his new teacher, introduced myself, and then explained about M’s headphones and his chewy. I wanted to be sure no well-meaning teacher would try to keep him from either. M isn’t yet 5, if I didn’t do it for him, who would? (Besides Mark of course.)

Flash forward to yesterday. M and I were visiting his new classroom during the main church service (so that the classroom would be empty), and ran into his new teacher in the hallway. She introduced herself and M said something to the effect of, “Hello. This is my chewy. I chew on it. You will let me chew on it in class.”

Boom. Unprompted, he identified his own needs and advocated for himself to a stranger. I was so proud!

So, lesson learned. Next time, I’ll give him the space to take the lead first, and follow up afterwards instead of the other way around.

Before new classes started

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One Comment

  1. You seem like a very smart mommy! : )

    I am visiting via your comment on the SITS link tonight via facebook. So nice to meet you : ).
    Take care, Becky

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