Having read Dr Karen Pape’s website then I knew that we needed to do something proactive for Oscar so I contacted her and she put me onto Pia Stampe at Step by Step Pediatric Therapy in Rochester, NY, USA.  Man oh man I felt like we had found the holy grail of options for Oscar.    Pia’s site has many testimonials that speak volumes about Karen and her approach to helping not just kids but adults with CP and Brachial Plexis Injury (BPI) or also known as Erb’s Palsy.

So how did it work when NZ is on the other side of the world?  First up Pia asked for some specific videos and photos to be done of Oscar including:

  • walking
  • running
  • talking
  • standing
  • sitting

Then we had a call with Pia and I talked about Oscar’s history and what we wanted to focus on.   Pia said ‘yes, we can help you’ and unlike our initial ‘Yes’ from Conductive Ed when it was turmoil of hoping he wasn’t severe enough to need help I was so ready to hear a yes from Pia!

They have options for 3 day, 5 day and 10 day intensive therapy sessions but with how far we had to go we took on the longer stint so that we could maximise benefits.  Our therapy was to be split into OT, PT and SLT with an hour each a day.

Our first day was one of assessment and they worked him from top to bottom 🙂  They got a great sense of how his body functioned but not necessarily his personality as he was very quiet and compliant in that first week. No the bolshy Oscar that we can get!

Video’s were sent backwards and forwards to Dr Karen Pape and on the third day  Pia said we believe his biggest single issue is CVI (Cortical Vision Impairment).  They are not experts in CVI but have some experience and have factored that in but recommend we see an expert in that to help him.  CVI is basically the brain not communicating normally with the eyes and that impacts his balance, his reading, fine motor skills, catching balls and many aspects for him.  It is not looking promising in NZ when our neurologist doesn’t actually know what CVI is but the expert that Karen Pape advised is Christine Roman based in Pittsburgh.

Our great issue for Oscar has always been speech.  With confirmation that something was wrong at  10 months,   I had not even contemplated speech would be an issue.  I had just assumed his weaker right side would leave us with gross and fine motor skills issues. Oscar has Dysarthria, a motor speech disorder which results in poor articulation of phonemes.  IN simple terms it is an issue of the muscles that control his speech.  However, like many stroke victims Oscar can actually sing better than talk and the singing area of the brain is in a different location.  We know Oscar can do it, the challenge is to unlock it and for that we have been recommended singing therapy as an adjunct to his speech work.   We have an appointment booked for assessment with Raukatauri Music Therapy next week to start a plan in place for Oscar.  This part excites me a lot – we know Oscar loves music and perhaps he has a genetic predisposition with it from Grant, his Dad, who is a musician.

We came home with detailed OT, PT and SLT assessments and therapy suggestions for us.  I’ve put together a schedule – a lot of it can be a little bit fun and it does not have to be onerous.  Next week I meet with Oscar’s teacher to factor in some parts of that into his daily school routine.

We hope and expect to continue to get benefits from what we are doing for Oscar.  Whatever has happened for Oscar – be it genetic, or a physical event – his brain has recovered.  Karen Pape believe’s that his speech is a product of the only way he could learn to talk when his brain was still recovering but now that it has we have to try and retrain that.  The most amazing thing to never loose site of is that it is possible to change it for kids like Oscar but it doesn’t happen on its own.

If you are interested then please check out StepByStep  http://www.sbstherapycenter.com/