Wednesday, August 24, 2011

What a difference...


Wow. What a difference a week can make...

If you recall the drama from last week (if not, you can read about it here), you'll be pleased to know that Bean's therapy situation is finally straightened out and I am very happy with the current situation.

After the initial confusion last Tuesday, I got another call from Bean's old physical therapist (PT) on Wednesday. I did not answer the phone under the advisement of his service coordinator (SC). From her message, it was clear that she had still not been notified so I called the SC again. And then I called her again on Thursday. And then I called her again on Friday and then AGAIN on Monday. On Monday, the SC was able to tell me that the PT had never been notified by her supervisor (which is protocol) so the SC contacted her personally. Per my request, she made it very clear that I really liked and appreciated the PT but that we needed to give Bean a little jump start and try some different strategies.

So, the new PT was here yesterday. And I LOVE HER! She is exactly what I was hoping for. Very different than his old PT. Very proactive and very knowledgeable. Since she has never treated a child with Williams syndrome (WS), she took the time to learn about Bean's diagnosis before she got here. She also talked with Bean's other therapists that are employed by the same agency to get an understanding of his personal situation.

She understood, without pressure from me, that she should not be discharged from PT simply because he is walking. There's many more things to work on. And she got that he is a long-term candidate for PT given the unique challenges associated with WS. Specifically, children with WS often have hypotonia (low tone) but go on to have spasticity (tightness) issues because they lack the elastin gene. She also had an awareness for Bean's sensory issues and ideas on how to address these needs that were very complementary to the work we are doing in OT. She clearly has cross-disciplinary training.

The new PT connected well with both boys and she asked a ton of really relevant and important questions. Before leaving, she gave me several new things to try. I felt like we accomplished more in that first, introductory hour than we did in the last 6 months with his old PT.

I still feel bad that Bean's old PT's feelings were hurt but I am so happy that I decided to make the change. The difference between the two therapists is like night and day and I am so excited about this new direction.

We also started Speech Therapy (ST) this week and I love, love, love his ST, too. She comes from the same agency as his OT and new PT - I think they are the best! She worked with two other children with WS in the past and she made an immediate connection with Bean. Baby J thought she was pretty great, too.

She wasn't able to do a whole lot in the introductory meeting because she was still waiting on the Rx from his ped but she did give us a couple of suggestions that, looking back, seem obvious but I had never considered.

  1. When naming objects in conversation for Bean, we should hold the objects beside our face so that he can look at the object AND watch our mouths. And I swear, it's working. Earlier today, I got him to say "Elmo" (sounded like el-lo) five or six times!
  2. When practicing "mommy," which he is not yet saying, hold the back of his hand to my mouth and say it slowly so that he can feel the vibration and then hold his hand to his mouth while I say it again. This is really working. He loves the vibration and is getting very close to an "M" sound. And it's only been two days!

In case you can't tell, I am incredibly excited about the way things are going. We have two new, fantastic therapists and they are already making a difference for Bean and our family.

3 comments:

  1. So glad you went out on a limb and asked for what you wanted! All this hard work that you're putting in to Bean's therapies will surely pay off. It's exciting that there's already been progress....

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  2. YAY! Glad to hear this is working out so well, the proper care really can make a world of difference.

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  3. what an awesome post...I'm thrilled for you guys!!!

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