Sunday, December 7, 2014

Toys & Games for CP / PVL kids

It's getting close to Christmas, so let's talk toys. I can't speak for all two year old boys, nor can I speak for all special needs children, but maybe some of my ideas for my child will give you ideas for the kids in your life.

Jonathan has periventricular leukomalacia.  Which on the surface seems to mean he has a mouthful of impressing sounding words and another acronym (PVL) in his medical charts. I explain PVL (in his context only -- not an appropriate explanation for all kids) here. But my one sentence explanation (which, of course, is not at all medically accurate, but gets us close enough for dinner conversation) is that PVL is "a close cousin to cerebral palsy."

Whether from PVL or prematurity, he has a weak core. He has difficulty drawing because he doesn't push down hard enough. We've discovered that a magna doodle is A MUST HAVE. He loves it, because without exerting much force, he still can draw lines.

In addition, he has difficulty letting go of things gently, which makes it difficult to stack things. He's a fantastic kid, but he's weak and clumsy.

So I was DELIGHTED to find this website. ( I especially covet the Brio Magnetic Building Blocks. I wish Santa hadn't already finished his Christmas shopping for our family.

Another accidental find was "the duck." You see a picture of the duck below. We got J the duck because he hates baths. And we thought if he felt more secure in a bath, he'd like baths better. So far it hasn't worked. BUT -- as long as the duck is not filled with water -- he LOVES the duck. The PT and OT that come to our house love the duck too. J reaches to the side to pick up toys and put them in the duck. He climbs in and out of the duck. In other words, he engages his weak core all over the place.  We found this in the baby bath section of our local grocery store.

In other news, you'll notice in the first picture that J's walker sits under the Christmas tree, "a crutch... carefully preserved" as he has learned to (mostly) walk around the living room without the walker. He still walks better with AFOs, but he'll walk around without the orthotics now as well.  Merry Christmas, and "God bless us, every one." (for my obsession with Tiny Tim, see this article where a doctor convincingly puts forth the case that Tiny Tim, like Little Jon(athan), had renal tubular acidosis.)

P.S. The duck that he holds in his hand? That is the same duck that you see in his pictures from his 12th day of life, below. See how much he's grown?

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