Friday, April 14, 2017

The Practical Aspects of Living with Limb Differences

Two of my children have limb differences, to varying degrees. Both children have both upper and lower limb differences. One kid uses a wheelchair; the other doesn't. One child wears an arm splint; the other a SMO.

As a parent, one of the hardest things about learning to live with limb differences was that there was a far more discrete pool of people to turn to for answers. When I wanted to know the best brand of sippy cups or strollers when my typically developing son was small, I just asked my friends. But, those same friends were just as clueless as I was about ADLs and limb different assists! (That's not to say that they didn't try. They did.)

Therapists and doctors are a great resource, but the simple fact is that while many of them are very knowledgeable in their field, few of them actually live with anyone with a disability. They see patients in a clinical setting, not in everyday life.

The people who I've found most helpful to talk to about living with a disability are (not surprisingly) the people with the disability and, in the case of children, their parents.

There is a Yahoo or Facebook group for just about every kind of special need. If you're not in one, Google until you find one. Then join. Ask your questions, no matter how "dumb" they are, I bet you'll get answers.

Before we traveled to meet our daughter, I reached out to several other moms who had children with significant limb differences. They recommended using slant boards and U-cuffs and bendy straws. When we traveled to met our daughter, I went with a suitcase filled with bendy straws. I was bumbling along trying to figure everything else out but heck if I didn't have bendy straws. During every water break, I felt empowered. (I'm not kidding, not even a little bit. When your world is changing dramatically, it's nice to feel you have control over at least one thing.)

Here's my Pinterest board for living with limb differences if you need some specific assists.

1 comment:

  1. We have been there to see the ways you handled many of the big challenges and huge meltdowns. You have been through some real trials and errors, but I can tell you well done, Jessica, well done!