Musings of a Marfan Mom

Finding Balance in Special Needs Parenting

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This week (ok, maybe this month? More than that?) I’ve been struggling with balance. After a conversation with a friend tonight, I know I’m not the only one.

On the one hand, I think I’m a pretty good mom. My boys are happy. They get loads of hugs and kisses and tickles. We sing songs and read stories. I work very hard at advocating for them. They each have a therapy/medical team that I’m pleased with and are making real improvements. I like to think that’s in at least part due to me.

The other part of my brain though…that part reminds me of all my inadequacies. Every time the behaviorist comes over and asks for me to hand over the most recent “data” on M’s aggressive behaviors and I’ve only managed to capture a few days worth, I feel awful. A better parent would be able to record each and every six minute interval from 4-7 pm every night and manage the accompanying gold start chart, this part of my brain says. Or then there was the conversation with M’s OT the other day, where I mentioned M’s sudden apparent fear of certain things on TV, which the behaviorist thinks is manipulation, but I wanted to rule out any sensory causes. The OT chastised me for allowing him to watch any television and launched into an explanation about all the reasons it’s particularly terrible for kids on the spectrum. Rather than thinking enh, she’s got no idea about my life and M doesn’t have any of those reactions to TV, I immediately figured I was ruining his brain.

I’m caught in this battle between therapy and fun, between Mom and Therapist.

How do you find the balance? How do you make peace with not being able to do everything, and reconcile the part of you that knows that’s ok with the part that screams it’s not?

baby doing occupational therapy

Baby J in OT

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