Every Friday when I pick Penny up from school, she has stickers on her back. I ask her about them. And she tells me, "I did a great job with Miss Sharon, Mom!" Miss Sharon is her physical therapist. So this past Friday when I asked, she was a little more specific: "I did awesome jumping, Mom!" Early on in her life, we adjusted our expectations for what Penny would be able to do physically and for when she would be able to do it. I stopped looking at developmental charts. Every six months or so, she would receive an evaluation, and I would hear the same news: "She has a significant gross motor delay." It was usually close to 50%.
It didn't bother me to hear this from her therapists. It just made her accomplishments all the more significant. It made me all the more proud of her when she was able to take the next step, do the next thing.
Penny learned to jump in September. And that ability to get both feet off the floor simultaneously led into six months of gross motor growth. So perhaps I shouldn't have been shocked when we met with Miss Sharon last week and she said, "I'm not sure how much longer Penny will be eligible for PT."
"What do you mean?"
"Well, she's doing so well, and she's made such strides, I'm not sure she'll have enough of a delay to receive therapy anymore."
When we got to the playground later that day, I watched Penny with new eyes. Scampering up a ladder. Sliding down the slide. Jumping. Balancing. Running. As she finished one of her playground feats, she beamed at me and said, "I can do it!"
Now, whether Miss Sharon is right in her assessment, I don't know. It doesn't really matter to me whether Penny places out of therapy or not. What matters to me is that she has confidence in her ability to achieve the next thing. I can only imagine what a difference it will make throughout her life if she believes that she can do it. And if we believe it too.
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8 comments:
I love that picture.
This echoes our experience so much. Leah had significant gross motor delays too (in fact, though she has a brittle bone disorder, her motor delays were THE major issue until she turned 2, when she started breaking bones). She placed out of full-blown special ed by kindergarten, but still had a 504 plan with in-school PT once a week, then placed out of that at the end of second grade. I was torn between being grateful she was doing so well and a frustration that the school staff didn't seem to get the cyclical/capricious nature of her disorder. That is--it ain't going away and a good couple of years doesn't mean she's better forever. Indeed, we ended up putting her back on a plan this year. It's wonderful Penny is doing so well, but my (unsolicited) advice is to do whatever you can to remind everyone that she has a lifelong condition and not to cut her off from services if they don't have to. It's harder to get back into it once you've gotten out. Of course, her condition is different than my daughter's in that she's less likely to be set back by an injury.
But hooray for Penny for her progress!
Hmmm...my word verification is "repress." What are you trying to tell me, Oh Wise Blogger?
This is so exciting!
I meant to email you to tell u that when I passed that photo along with the others you send relative to your bloom blog, our designer wanted to use it on the cover of the June print issue.
Let me know if that would be okay
I'm writing from hospital
Will update on the bloom blog later tonight
Yea Penny
amazing. go, penny!
and what a great picture! i've seen that same look of sheer delight of the flying baby.
Ditto. That picture is wonderful!
Appropriate expectations are a powerful thing! Great story, great picture!
How cool! Beautiful picture. By the way, we have very good family friends in NJ (Bernardsville area) that have an older daughter (I think she might be 20 or 21 now) with Downs. They are a wonderful family and have encouraged their daughter in SO many things; last time I was there she was showing me her beautiful photography...I'll have to connect you to them someday-- I'm sure they are full of resources they'd be happy to share.
Hi all,
Thanks, as always, for your comments and encouragement. I'm glad to hear Ellen's caution about getting out of PT too quickly, and thankful to hear from Lisa too. I love stories of older kids with DS. I think I used to think Penny's "light" would fade as she grew older, that somehow she would become dull. But I'd say she's only becoming brighter and brighter. Can't wait to see her when she's 20:)!
Thanks again, all,
Amy Julia
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