Thursday, January 14, 2010

Let's Take a Body Break

It’s been some time since I’ve shared in detail about Ava so here’s a bit about the last few months…

I had three options to choose from for some accelerated therapy over the holiday break:
1. Daily treadmill walking
2. Potty schedule
3. Wilbarger’s brushing protocol (google for details)

I could probably write entire blogs on all three of these items but I’ll spare you all the details. If you so wish to learn more about any of these exciting things, send me a message, I’ll clarify or explain what ever it is you find of interest. ;)

We started Ava in a reverse walker around the first part of December. This is the second or third time we have visited this particular walker and as a side bar; I am beyond grateful to have Ava’s PT, whom has invested so much love and equipment into her. As expected, Ava didn’t appreciate this fine opportunity….at first. With her vision problems she has always preferred to push a walker, rather than pull one and this is really what has held her back from any functional, independent mobility.

I guess I should explain that Ava has been walking for some time but not independently. She prefers to hold your hand so you can shift her weight, use your depth perception and get her where she wants to be, SAFELY. Anything less is just repulsive to the princess of the castle.

So, one of our goals has been to give her consistent walking opportunities on a treadmill which we started around the same time. She responded well and actually has a surprisingly nice gait when she is forced to walk at a consistent speed. Currently we walk weekly on the treadmill sans harness system. She holds on to the bars that measure your pulse at this time and the PT and I hold her arms when we want her to walk with no hands. Not owning a treadmill was a huge reason I passed on option 1.

Potty schedule is a hard, hard thing. Ava knows all about pottying, it’s the rest of us that need the training. Until we can find a nice communication system or independent moving (ideally both) I will not try to force this issue on anyone…especially myself. When the time is right, I know this will fall into place as we were so close, then school started. Option 2 was not hard to turn down.

On to option 3...the Wilbarger brushing protocol was not a new idea, we have been doing variations of this since Ava was a baby. Her Anchor School actually has a little ditty, “Let’s take a body break and brush…” you get the idea. I must say no one ever believed in it enough to suggest a grueling protocol of once an hour for 7-10 days. I think the training actually calls for 14 days; I made it through 9 on the 1x/hour schedule. I am now a BELIEVER and so are many of the therapists working with Ava.

So, what’s changed or new?

*Getting around the house on a trike, independetly. YES, where ever she chooses to go on her or her sister's trike she can – forward or back.

*Using her walker functionally. YES, she can even pick it up and change direction. I now find us doing things like getting the walker out in the parking lot of Target and letting Ava prove how well she can use it…to the pharmacy and back last night.

*Speech – “DRINK” and functional things like that are becoming part of our days as they come flying out of her mouth. This is huge; her neurologist has forever been concerned that this would be a very hard milestone considering Ava’s sleep patterns/issues.

I could list more things that would probably seem like small fries to those of you not walking a similar path. To make a long story short, these are goals that not everyone felt Ava would ever meet. These are goals that I and many others have been racking our brains to creativley meet since we started this gig. Ava has come a VERY, VERY long way in a tiny period of time.

It has proven to help with some behavior issues we have been dealing with, MAD AVA. I tried to pass this fantastic tool on to the school system to help with calming and apparently it is top secret knowledge that requires special training or it can “really screw up a kid's nervous system”. News flash, her nervous system is already screwed up and it is a surgical brush and joint compressions, shouldn’t take more than 2 minutes or be done more than 1-2 times a day. Really?

So….I’d like to extend my middle finger to Mr Wilbarger and his mission to capitalize on this very effective tool. He has successfully marketed a 'fear the protocol if you have not been certified' dichotomy of thought. I am NOT an OT, so if I can, any OT can. On that same note I notified the school that it works for me so I no longer would be looking for options that work for them. You can only do so much…

“Me, I just bear up to my bewildered best” Lyle Lovett


Robyn said...

Wow, seems like Ava's made great progress, good for her! I know it seems like baby steps to some, but to you guys, it's been leaps and bounds. We tried the brushing protocol about five years ago for Blake, we heard about it from his school, so it's a shame that Ava's school wasn't more receptive to it. Let them deal with the wrath of Mad Ava, then! LOL

HeatherS said...

Just remember that's a bear there, having lunch with you.....and it just just don't come no better than a bear :)

Jennifer said...

Great Post Taz. I love your humor. Great job AVA!!! Seeing her advance has to feel like a million bucks inside. So proud of all of you! I can relate through Tyrel so it is easy for me to "kinda" understand. Love and hope sent your way.

Anonymous said...

Naming a technique that works randomly with some people and then marketing it - you called it correctly on MS. Wilbarger.

I give credence only to the joint compression - actually makes sense in terms of anatomy and physiology. Brushing - not so much. But, an individualized 'sensory diet' - using what works for your child - the stuff of maternal science.


PS Congrats on all the gains!