A new chapter: Choosing the best therapy for my CP child – right now

I started writing this blog because I wanted to encourage and inform parents who were living through a similar situation to ours.

When I was pregnant with Emma in 2009, I would – like all expectant mothers – talk to my baby. This was a difficult time in our family’s life. There was financial stress and my pregnancy wasn’t easy. However, I promised Emma that whatever might happen, she must keep hanging in there. I promised her, that no matter what, I would protect her.

Every day since then, I have protected her as best I could, but in many ways I failed. Especially in the choices I made in those early years when I was scared and uncertain. When we found ABR it felt like we finally found hope and direction – something that would substantially help her. Our cup overflowed. We did ABR every day from 2011 to 2016. The ABR team, Leonid Byum and the community strengthened and supported us to keep up our daily struggle to save our daughter from as much misery as we could. I believed that ABR saved us. I still do.

In 2016 we had to make the very difficult decision to leave ABR. I have been struggling to write about this because it’s so personal and when you are living a special needs life, the special needs therapists are much more than service providers. They become comrades in arms, they become like family. It’s hard to walk away from family.

Telling you about this is difficult, but as a friend recently pointed out to me: “you are writing your story. If you are not being honest about your story, you are not authentic.”

So here goes:

In 2016 we moved back to our home country, South Africa, and left ABR to join a newcomer home-based therapy group from Serbia called BDA. BDA stands for Biomechanical Developmental Approach and the founders are two senior ABR trainers Slobodan Vujasic and Vladimir Dobrijevic who started this with a view of innovating further and developing their own method.

As with most of these difficult life decisions, there were many reasons we chose BDA. First, convenience: BDA opened a group in the city where we live. Cost was a huge factor for us and BDA offered us a more affordable price. We felt the BDA trainers were extremely experienced and the innovation of combining movement with mechanotransduction (on which ABR focused more) made sense to me. The more I thought about it, the more I felt both my parental instincts and my medical training pushing me in this direction.

Now, after six months on the BDA programme, I am very happy to tell you that we definitely made the right choice.

Emma has made remarkable progress in her ability to sit and use her arms. She can also hold a quadruped position for a few moments. These are things she was not able to do a year ago. I obviously don’t give all the credit for this progress to BDA, since ABR work was cumulative and foundational. In addition, Emma has wonderful therapists and teachers in her school who work with her to the best of their abilities. However, the tempo of change did seem to pick up after starting BDA.

I believe the two methods are closely related to each other and I see myself writing to encourage more families to follow either of the two routes. ABR and BDA are not offered in the same countries. Emma’s recent progress has shown me again, that if you follow this path the windows of development stay open and that the sky can be the limit for as long as you keep working faithfully.

The GMFCS curves have famously predicted that children on curve 4 and 5 (where Emma lies) reach their motor peak between the ages of 5 and 6 and after this a slow and steady decline will happen (this is whether you do regular therapy 5 times a week or nothing at all). Emma gained 5 points of her score last year and instead of the decline, her curve keeps going up!

We are so grateful.

I know this is the beginning of a new and exciting chapter for us which I intend to keep sharing.

“Here we go back, this is the moment. Tonight is the night. We fight till it’s over and we’ll put our hands up, like the ceiling can’t hold us, like the ceiling can’t hold us.”

Macklemore & Ryan Lewis