Talking about differences

I had a chance to sit down with a group of early education students at the University of Missouri and talk to them about what it’s like to be a parent of a special needs kid. There are times where it’s strange to say my daughter has special needs because she is so independent and unlikely to ask for help. But she is special and we’ve had a wild ride as we’ve gotten her to where she is so able.

I told the students about Jordan’s birth and how we didn’t know about her differences. I explained how there were many challenges Jordan had at first — how her body was curved and her shoulders almost touched her ears. I talked about her low tone and how she didn’t walk until she was almost 18 months old. (You can see video of her walking here.) It’s been a pretty wild ride. We’ve tried myoelectric prosthetics… twice. Most recently we went a little less tech-based and simplified with a passive arm that has three different types of “hands.” Jordan is so much happier and really participates in occupational therapy. She’s also wearing shoe inserts to help with her stability and ankle structure.

Coming up – we’re working on helping her strengthen her left side. She’s still a bit weak on that side. She slouches when she sits. She isn’t as strong on that side with her shoulder strength. She isn’t walking with a perfect stride.

Why am I working so hard on this stuff? I’m hoping to help prevent long-term damage to her body. If she overuses one side of her body too much, her muscles and bones will hurt at a very young age. I want to help prevent chronic pain and I want her to have as many advantages she can find with the tools that are available to her. We juggle health care, I search for grants that help fund her care. I’m always trying to get creative. But in the end, I’ll do whatever it takes to make sure Jordan is as successful as she can be in life.