Musings of a Marfan Mom

Finding Balance in Special Needs Parenting


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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  1. He looks like such a big boy in this picture.
    You need to know that these feelings of self doubt are part of every mother who is self-reflecting and trying do a good job. There is no way to know everything and there is no absolute right answer to every parenting concern. We all make decisions based on the limited information we have and our limited resources — and then we hope we’ve done enough. And by and large… we have. Keep plugging away…improving where you can and getting as much information as is reasonable and going with your instincts when appropriate. You have a lovely family.


  2. I think you are wrong. A “better” parent wouldn’t have. A super human one would have. You are entitled to fall back at times. You are human and have your own issues to deal with as well.

    We all have moments where we are overwhelmed. It’s normal. The key is to make sure you don’t make it the norm but an exception. Part of that is recognizing that are lives don’t have to revolve around our kids…unless we let them.


    marfmom Reply:

    I wish therapists understood that, or at least portrayed that they understand that! :)


  3. Your children look so happy and so loved. Enjoy them. You are obviously doing quite a bit right even if you don’t feel that way. As Moms we will always think that we should have or could have done more. You have to find what is right for you and for your children. The balance will come. There will always be times when you are being more reactive than proactive with health issues and those times will always be the most frustrating. Stay focused and keep going.
    You have a beautiful family.



    marfmom Reply:

    Thank you!


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