One thing that I’ve been wanting to do on this blog for like a zillion years is to start a collection of posts that are as much about the comments as they are about the post. I belong to a bunch of private message boards and there is a ton of great information on them, but private message boards can’t be found by Google and you have to join to see them. It’s a shame to let all that good information go to waste!

From here out out I hope that each Wednesday we’ll a have a post like this one–a post that lists an issue that I’ve spotted on a message board that other parents can comment and respond to. I’ll get the ball rolling with our own experiences:

These weren’t put on very well, but they still helped.

Have you ever tried Theratogs?

Yes! We have. We have found theratogs very helpful in getting Charlie to hold his body up straighter and we also noticed that he seems to hold these improved positions long after we’ve taken the theratogs off. The big issue for us and theratogs were the time involved in putting them on and the heat. Charlie overheats very easily, so we can only use Theratogs at certain times of the year–here in South Louisiana, that’s not very often.

Time was also a factor for us. Once Charlie got strong enough to start crawling, it can be difficult to get the whole getup without him crawling away halfway through.

Despite these limitations, I would definitely recommend theratogs for kids who are working on postures or who need a little support to become better sitters or standers–they seem to remind the child the best way to do these activities. When I think about things like splints and braces, this is/was the best product that we tried with Charlie.

Open Question: Have You Tried a Brace/Splint That Worked Really Well for Your Child? What Was It? Why Was it Great?

I’d now like to open up the floor for more wisdom. Have you tried a particular brace that worked great for your child? A splint? We tried some wrist splints for Charlie and he could take all of them off. We did night knee braces, but I don’t feel like they did a whole lot and they definitely made sleeping harder. I’m considering trying a Benik splint to help him get his index finger out for using the iPad, but I’m worried he’ll just take that off too.

So when you’re a blogger, you sometimes get invited to fun things and other times you hear about fun things and then call everyone you know to see if you can get an invite. When I heard about a holiday party that would feature a bunch of up-and-coming new toys, I wanted to go SO BADLY. I pretty much never write about products on here, but I know that Christmas shopping for a kid with special needs can be really tough, so I wanted to check out all the goods and see if I could find some good buys for special needs kids. Now I know that I don’t know it all, but I found some toys that I thought would work for kids with various kinds of disabilities. I’m also going to share some of the toys that my family loves that aren’t new–they’re just fun.

Infantino Light and Sound Music Ball. This light ball is perfect for a kid with very limited use of their arms. I live in a raised house and you could set it off by walking across the floor. It would definitely work great on a tray. It makes tons of goofy noises and enough lights for a Mardi Gras float. It’s not perfect, though. First of all, it’s a little obnoxious. This is perfect for a kid who needs a lot of light and noise to be motivated, but it can be tough on mom and dad. The other drawback is that it uses those tiny watch batteries instead of traditional ones. Still, if your child doesn’t have a lot of movement, this is a great toy because just getting close is often enough.

Zsu Zsu Pet. Somebody gave us a Zsu Zsu Pet as a gift and at first I was completely stumped–what was the big deal? Then I let my twins see it. I have two words for you: Giggle. Overload. But how does it work for a special needs kid? Well, I suspect pretty well. We can put it on the tray of a Rifton chair and it scoots this way and that for a very long time before you need to reactivate it. It’s so cute and it will run all over a tray with a lip without going over. We like ours so much I’m giving the boys a second one for Christmas.

Tiny Love Follow Me Activity Toy. A similar toy is one that I saw at the Holiday Helper event I attended–it’s a dog that walks! This little dog was just adorable. A child bats at it and it starts moving. You can even twist it a little so it walks in a circle instead of a straight line. At the Helper event the display dog was pink, but I ordered the more boy-friendly version for my fellas. I think this one is going to be a big hit with all of my boys. I think this would work well for special needs kids because it doesn’t appear to need a real specific touch to get moving. That way, you can encourage your child to bat at it even if they don’t have great aim because of spasticity. The reviewers do mention that the puppy doesn’t walk on carpet–just something to be aware of! He’ll be fine on my plastic wood floors.

Lite Brix Space Trooper. Another great new toy that I spotted at the Holiday Helper event was a robot that lights up. Now, I have no doubt that Charlie would not be able to build this robot on his own. What I like, however, is how bright it is. Since he’s a kid with vision issues, it’s often hard to get him to interact with toys that stimulate the imagination. I have a feeling this one will be bright enough to capture his attention for a while. It does have a battery pack that hangs off of it, which won’t be a problem for us, but might be depending on your child’s activity levels.

Step2 Walker Wagon. The final toy I saw at the Holiday Helper event that sparked my interest was the Step2 Walker Wagon. This is one of those classic push toys, but what I like about it is you can add things to it to make it sturdier. We have a couple of push toys in my house that just go, go, go and with August’s balance issues, this was not a good fit. I wish I could find the video I took of him careening wildly across the kitchen barely holding on. With this little Step2 wagon, you can add blocks or other items to make things a little sturdier.

These are, of course, just suggestions based on my personal experiences–you should always do your own evaluation. At my house we are also big fans of gift cards to the iTunes store. Best of luck with your shopping and Happy Holidays!

Every day the bus comes and collects the boy in the yellow wheelchair. He usually smiles as the lift brings him up.

At school the kids in preschool watch to see him come off the bus.

In many ways, Charlie has already become synonymous with his chair and lately I’ve been wondering about that. I bought the chair so he would have a way to travel around school–I didn’t think about how it would give him an identity.

I’m also not completely sure I like that. His teachers tell me that often people come into class and are amazed to see him sitting, crawling, and playing with toys. Really, though, that’s not a huge deal–Charlie eventually reveals himself–he’s far more capable than he lets on at first.

But what about how Charlie sees himself? Does he see himself as the boy in the wheelchair? Does he even imagine that he might walk some day. Or is that not something that four year olds think about?

I spoke to the PT about it and she said that as long as we’re not teaching him that the chair is his only mode of mobility, that it shouldn’t impede his ability to learn to walk.

I still wonder, though, about how he sees himself. Does he think of himself as the boy in the wheelchair? Does he even want to walk when he’s got such status by not walking?

I’m not sure. I’ll be thinking about this one for a while I’m sure.

Charlie's therapist wanted me to be sure to mention that his Theratogs aren't on quite right.