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My Health Soap Box

If you’ve visited here before, you are probably well aware that I feel very passionately about certain situations regarding Jillian’s care. Some might say that I can get a little ranty or preachy if you will. But honestly, I’ve been like this my whole life. If I feel strongly about something, I would love to educate people about it. I love (and welcome) differing opinions, just to make sure to hear both sides of the story. Things aren’t that different here either.

I’m sure I could pick a few topics that I feel strongly about but this time, I’ll focus on advocacy. Whenever I meet other special needs parents for the first time (either online or in real life) a common topic that comes up is how we deal with public perceptions. At one of my Parent Talk meetings, we had a new mom join us. (I’m always excited for new parents! No Parent Talk in December but we’ll resume January 31!) Public perceptions came up pretty early on in the conversation. She brought a 4 month old baby with her and since I don’t see babies often, I was admiring from a far. I honestly thought that the mom had an older child she was talking but, but she then pointed out her daughter had a hand and foot deformity. I hadn’t even noticed! I explained to her that I didn’t even notice it. I wondered if it is because I’m around special needs children a lot or if I honestly didn’t notice. She was so beautiful and smiley, I spent all my time smiling at her and looking into her eyes!

Raising a special needs child is most definitely not always sunshine and rainbows. Do I always feel like advocating? Truth is, no. However- (and this is a big one for me) I generally take those times to educate. Although cerebral palsy is a “common” diagnosis, there are so many misconceptions that I’d rather enlighten people as opposed to letting them stay with their own ideas. When I first told a close friend about Jillian’s diagnosis, she replied with “but she doesn’t LOOK mental!” That’s one stereotype I’d like to get rid of.

I’ve had 2 different encounters regarding my use of our handicap parking permit. The first time, I cried. The next time wasn’t the best way to handle it either, but it was a learning curve and it still is. When we’re out in public, and someone asks “well, what’s WRONG with her” Lauren has spoken up and said “nothing”, and honestly there isn’t anything wrong with her. Since I tend to take these scenarios as a way to teach not only my girls but others, it’s been an eye opening experience. I’d much rather have someone ask a question instead of coming up with their own conclusions.

My hope-by using education- is that Jillian will feel comfortable enough  advocating on her own behalf. And you know what? She is. We recently encountered an OT that was clearly not going to mesh with our family. I was mortified at first, but the OT was speaking to Jillian in a baby voice, asking her if she could draw a straight line, Jillian replied (in the same baby voice) “Can you draw a squiggly line like this?!” She never did draw that straight line…. At one point the OT complimented her on her listening and Jillian said “I do have ears” and promptly shut down and wouldn’t cooperate anymore. It was then I realized I had given her some of the necessary tools required for self advocacy. Not to mention the recent changes with our Ronald McDonald Playroom.

There are certainly some days I don’t want to answer pointless questions about our life and cerebral palsy, but I try to remember that humans are curious creatures. And that’s why it’s often difficult to look away from a painful situation or inquiring “what happened”?




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