So finally, here it is. My much awaited post about ABR.
Actually, it’s kind of fitting that it should have taken me so long to write it, because it also took us a long time to finally HAVE our first encounter with ABR.
Here’s a little background. A couple of years ago, I first heard about ABR when I was looking into trying hyperbaric oxygen (which we decided against, but that’s a whole other post). As often happens though, one thing leads to another and I learnt for the first time about ABR.
I went home and googled it and eventually found myself led towards quite a few websites, but these three were most significant. Firstly, a blog by a family that do ABR (thanks Jacqui at Terrible Palsy!), secondly the ABR Pacific Yahoo support group and thirdly the ABR website of Leonid Blyum (the ‘inventor’ of ABR). Through all of these sites, I learnt more about ABR – enough to know that I wanted to know more.
Through the support group I had the good fortune to meet a mum who also has been doing ABR with her son (thanks Bron!). She was even able to show me one of the ABR machines and tell me a little more about the assessment process, training and actually delivering the therapy.
Eventually, I got around to getting a DVD from the lovely ladies who work as the support for ABR here in Australia. The DVD showed a few assesments, later visits and highlighted the changes. There were quite a few tears from the children during the assessments, but nonetheless, I found it interesting and fairly compelling.
So then, I hear you ask. Why, if I’d done all this research has it taken me so long to actually have an ABR assessment?
The answer is simple.
Regardless of all the great things ABR might be, there’s one thing for sure that it’s NOT – it’s not cheap. In fact, it’s quite expensive.
Expensive therapies always raise a red rag to me, because I worry that those behind it are not looking to help, but rather looking to take advantage of parents (like me!) who scour the Internet looking for the latest, newest, most up-to-date news, developments, therapies to find the ‘big thing’ . Parents who don’t want to find out too late that there was something they could have, should have, would have done if only they’d known. It’s odious, appalling, disgusting that there are people out there who would stoop so low. But it’s a fact.
So, despite the positive thoughts I had about ABR so far, I still wanted to know more before we handed over any money.
Oh, and I should add the simple fact that we actually don’t HAVE any money anyway. So that helps us avoid spending it unwisely .
Every now and then over the months that followed, I’d stumble upon another blog that mentioned a family doing ABR or meet people online who were loving it. I had not yet heard from someone who was doing it who didn’t think it was really helping their children. Compelling stuff.
We made a couple of half-hearted attempts to attend an initial consultation in Singapore on our way to visit family in Indonesia, but the timing didn’t work out and we couldn’t raise the funds even for this initial consultation.
So then, when I received an email through the ABR Support Group that THE Leonid Blyum was coming to Australia to give a 2 day seminar to parents and was offering initial assessment for a very low price, it seemed like the perfect way for us to finally see about ABR for ourselves without having to invest much money.
THANK eternal to those who organised this event. I know it meant a lot of hours, a lot of behind the scenes work and a LOT of organisation.
The seminar itself was interesting, although I think there was much repetition in what Mr Blyum had to say on the first day. His points were good and all valid, but I think with more planning, his presentation could have easily been compacted into 2 hours rather than the full day. He explained a little about what ABR is and how it works and also made a few other main points (as I saw them) which were thus:
*Parents should not put ALL their faith in the wisdom of modern, traditional medicine – there is so much that is unknown about cerebral palsy.
*Parents should be encouraged to take control of their treatment/therapy of their children.
*ABR is not the answer to everything, but it offers something that no current therapies can offer – and is safe and easy to do (once you learn how).
He also made quite a few (what I considered) scathing comments about the medical profession. Some were probably valid, but on the other hand I felt he was too quick to tar them all with the same brush. I certainly have had a few terrible experiences with doctors, but for the most part our experiences have actually been quite good with open minded doctors definitely willing to look outside the square. Who knows. Maybe we’ve just been really lucky.
On the second day, it was interesting to hear from some parents who are already doing ABR and also to have an ABR experience courtsey of the trainers who were there. Interesting. Unfortunately, I couldn’t stay for the second afternoon as I’d needed to bring the kids in with me and they were DONE by lunchtime. So we went exploring the city instead. Sigh!
The next morning, we went into Darling Harbour and had BC’s actual assessment. Finally.
In anticipation of him being as upset as the kids in the DVD, I’d promised him a full hour of travelling around and around the monorail after the assessment as a reward.
In fact, BC LOVED the assessment so much that he later asked me when he was going to see ‘the very very very funny man’ again. I think he liked the lights, the video camera, the camera, all the attention – put simply, he thought he was a film star.
Full credit to Leonid and his team as well, they gave us a copy of the DVD of the assessment to take away with us on the day. Nice.
And useful, as much of what he said during the assessment washed over me. I was too busy watching. Watching and marvelling at BC’s good humour and waiting for him to totally spit the dummy, which he didn’t do, not even once.
So we’ve watched the DVD several times now. I like what he has to promise. I agree with much of what he says – including the fact that BC’s good natured temperament would really help make working with him and getting up the hours a lot easier.
And here I am, on the other side of our ABR encounter still interested, but still facing that same problem.
How can we afford to do this? IS it the best way to spend our very limited resources? If we DON’T do this are we depriving BC of a therapy that could really really help him?
While we’re still not sure, we think we’ve found a way to give it a try. They have produced a home training program, that includes a DVD package, a hnadbook, equipment and a one off 2.5 hour training session (to check you’ve got it right).
We’re thinking of giving this a go. We’ll have to ask my dear old dad if he’d like to contribute to the cost of this, because while cheaper, it’s still not cheap.
So, the bottom line? Well, most of the parents who do ABR, swear by it. I personally still feel somewhat troubled by the expense because I’ll be honest and say, I cant quite see how it’s justified (ie where the money goes), but I’m willing to trust the judgement of all those mums and dads who’ve decided this is a path to take to help their kids.
I will let you know how we go.
You’ll notice this post gives scant detail about what ABR actually is or claims to do. If you want to know more about all that, I think it’s better you look to those who know more and can explain it better than me, including several parents who do it:
This interesting ‘critique’
The main ABR site
And just a few of the sites from centres which offer training: