It's Thursday and I didn't get around to posting yesterday so I have two posts today!
The second one is really just silliness with the kids.
The first is... a little more vulnerable.
But I have to say that I did have fun editing the photo.
Edited to add: I realized after making this that I did probably speak to generally and that obviously this won't apply to everyone with a disability and their experience. I do think it's a widespread problem though and that's what I was trying to express here, however imperfectly.
Thursday, April 19, 2018
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I love comments and I read every single comment that comes in (and I try to respond when the little ones aren't distracting me to the point that it's impossible!). Please show kindness to each other and our family in the comment box. After all, we're all real people on the other side of the screen!
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As a caregiver, I feel invisible in two ways:
ReplyDelete1. When I "show cracks in my veneer," I feel totally painted over. The big, obvious example that when my daughter was two, she took her first steps, but it took a long time and lots of therapy before she was a strong enough walker to walk more than she crawled or needed to be carried. When I confessed to how difficult this was on me, I almost always heard, "When I know someone who didn't walk until they were two, and they turned out just fine!" Um, hello? Years of therapy and practice and tears and sometimes blood vs. eventually getting the hang of things. Yeah. Not the same. For everything. Potty training. (She's almost 7 and not. even. almost. trained.) Dealing with crowds or loud noises. Throwing things. Using our words instead of hitting. It's hard to say this, but family can be the worst when it comes to this. "Oh, she get's that from me!" I hear c-o-n-s-t-a-n-t-l-y. No, not unless you have Down syndrome and a serious heart defect. It's really frustrating. I don't talk much about how I feel irl anymore.
2. It's so freaking hard to get therapy for Abigail. I don't want to offend anyone, so I'll leave it at that.