I made these 'learning posts' in June for Spina Bifida Awareness month, but thought I'd make a stand-alone blog so that if anyone is interested, all of the information is here. And I can add as I learn more about spina bifida as well!

Spina Bifida is the most common birth defect in North America. My son Nickolas was born November 13, 2009 with spina bifida and I have chronicalled our journey here, in my personal blog.

I hope you enjoy and learn something!

The information from this blog has been collected by myself to share what I have learned. It should in no way replace medical recommendations or consultation. This is for educational and information purposes only.

Start by picking a topic below:

Wednesday, June 30, 2010

Learning About SB: Working – PT, OT, ST

When talking about the different therapies with spina bifida you use a lot of different letters, PT, OT, ST. Physical therapy, occupational therapy and speech therapy. These are the people that help make children work. These are just a couple of people who are in our healthcare team. We also have the neurosurgeon, paediatrician, developmental paediatrician, development worker, social work, urologist, family doctor and I’m sure we will add to this team as Nick gets older. Usually there is also an orthopaedic surgeon, but Nickolas luckily didn’t have any problems (I don’t want to say yet, so I’ll just leave it at that).

I am not going into everyone on the healthcare team, just the T’s, the therapists. So, we have PT, OT and ST, our own little T team.

Physical therapy works the big muscles. They help with the walking, they deal with mobility devices and they are the ones to make kids cry. That is what Nick’s PT always jokes about, that PT always makes kids cry. But that is how we know they are working. There seems to be a running joke between PT and OT. Who the kids like more.

Occupational therapy works in small muscles, the little things like holding a pencil and holding things, working on the hands. Occupational therapy deals with life skills and helps to work toward independence. Speech therapy works on, well, speech and language development. These kids are at risk because of everything that life has thrown at them so far. Between anaesthesia and operations at such an early age, let alone hydrocephalus and Chiari malformation.

Speech therapy is actually something we have Katheryn in right now. So even though Nickolas is talking up a storm, we still can’t escape ST.

An article that I found said that success or failure of PT depends on the ability of the therapist to teach and encourage the parents to help their child to become as independent as possible in daily life (Hewson, 1976). I didn’t realize how old this was, but I actually like this, at this age it isn’t about making a child do something. It is teaching the parent how to encourage their child with exercises and stretching. Physio involves building strength and muscle. It is creating the building blocks and then just making the castle bigger and bigger. We are building the foundation. Right now that is trunk control.

Using a yoga ball and Nickolas’ corner chair are 2 things that we are using to help with physio. We haven’t done anything with OT yet; I think once he gets older they will get more involved. And as for speech, he is right where he is supposed to be. And that is really a nice thing to be able to write.

This is going to be my last educational module. I think it is #9. Too bad I couldn’t get to 10, but maybe next year. I wrote them through the month of June to celebrate and educate about spina bifida month. I’ve learned a lot in writing them and researching them, and finding all the pictures that I love putting up.

I’m thinking that I’m going to move them to a different page, just to clear things up a bit. If anyone has any suggestions about other topics to cover, or something they were interested in. Please, please let me know and I’ll look into it. This has actually been pretty fun. I’m hoping to transform these into a PowerPoint presentation that I can show people/classes. I can work on my little circle of people to make spina bifida a household name, and hopefully if one person understands it a bit more, and is less afraid when they get the diagnosis, then I have succeeded in what I’ve wanted to do.

So I hope you enjoyed!

Hewson, J.E. (1976). Basic physiotherapy of spina bifida. Dev Med Child Neurol Suppl, 37, 117-118.

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