The right support people

I was at the diabetic clinic with my daughter the other day, and yet again, I was reminded of the importance of having good professionals involved with my kids.

For those of you who don't have a child with diabetes, here's how the diabetic clinic works. Every 3 months the diabetic team meets with the child and parent(s) to go over the plans and care of the child to see what's working, what isn't, does medication need to be adjusted, etc. There's the diabetic nurse educator - her name is Cathy and she's been involved with us almost since diagnosis. Then there's the revolving door of dietician/nutritionists and of course the interns who are also constantly changing. And the pediatric endocrinologist is there too.

So first we met with Cathy and dietician. I can't even remember her name, and it probably doesn't matter because she wasn't there last time and more than likely she won't be there next time either. She has never met my daughter and other than quickly reading her chart really doesn't have a clue about her. Cathy however, is wonderful and welcoming to my daughter and she talks to her like an old friend. I can't speak for other parents, but for my daughter with FASD, seeing the same faces every time is so important. Cathy remembers to ask her about her favorite stuffed animal, she remembers what they talked about last time, and just generally connects with my daughter.

And you can see the anxiety building up in my daughter as she is faced with a barrage of questions from the other two (dietician and student) at the table. Her feet are shuffling and her legs are bouncing and she's playing with the strings on her hoodie, while giving one word answers to their many questions. I'm not one of those moms who answer the questions for my kids; I keep quiet and let them answer.

So while Cathy and I discuss the insulin pump and sensor and try to figure out what we need to tweak the dosages, I'm trying to give the other two professionals a bit of background on some of my daughter's challenges. (Note to self: next time just make general conversation). Then after we get the dosages figured out, we start talking with the dietician about food issues and I try to explain my daughter's inablility to stop herself from taking sweets any chance she gets, and what we're doing to try and stem that. And then it happened...the nutrionist leaned into my daughter and said "It's ok, we all crave sweets now and then".

No,it is NOT ok. For crying out loud - this kids has FASD. She's not the same as you! She doesn't crave sweets "now and then" she craves them ALL the time. And she can't stop herself. I just wanted to scream at the woman.

After that part was over, I talked to Cathy outside the office and told her how much damage that one comment could do. Cathy looked as frustrated as I was. She "gets" it. Cathy said she'd speak with the dietician and try to explain to her. But I could feel Cathy's frustration too. It's tough to have to educate every newbie that comes along. Yeah well, when I rule the world things will be different.