ABR Therapy / Visiting Montreal

When Sam was first born, I heard of ABR therapy. And a billion other therapies, and I guess it got lost in the melee. Then a few years later, I learned of it again from my most valuable resource, my online moms. I trust them more than anyone, really, and so when they said, all at once, "TRY IT", we did.

If you've poked around this website (or my brain) much, you know I don't put much stock on coincidence anymore. Several months ago, over about a two week period, I heard from about a dozen moms who told me that I HAD to try this therapy - that it would help close Sam's mouth, open his hands, give him trunk control, etc. etc. etc. Given that it was all coming at me at once, I checked into it and said to Tim "I think we have to do this"

Leonid (the inventor) only comes to Montreal (the closest location to us) twice a year, and so we started making plans for the fall. Aside from what we learned, we met people I've been talking to online, which is beyond helpful. Of course, I wish they didn't have to deal with this, too, but that's just wishful thinking for all of us. It's just that occasionally it's nice to look into someone's eyes who actually understands. Who doesn't pity, just gets it. We get to have a few minutes where we're just normal for a little while. We can laugh and share and compare -and just relax without defending our kids. I think that's as close as we get to being soccer moms, except our kids can't play soccer, if that makes any sense.

The idea is basically just to apply very gentle pressure to help build Sam's soft muscle structure back up - it's collapsed from the brain injury. It was very hard to hear just how badly his structure is, and to learn that he is one of the most severely injured children they've seen, especially considering the number of children they see all over the world. At one point, prior to our evaluation, Leonid came in and briefly examined Sam, and then left without really saying anything to us. I thought he was going to tell us there was nothing ABR could do for him, but he just wanted to tell the trainers to adjust the exercises for him.

Sam really seems to love the time spent doing therapy - he relaxes right away. We have to apply very gentle pressure or it could overload him, since we're working on his head for part of the time. This will actually change the structure of his head and face - and help him SMILE.

When we went for our evaluation with Leonid, he asked us first what our priority was for Sam. I told him that above all, I really need him to smile. It's hard to only see reactions of anger or, well, nothing from him, and I really need some sign that he's happy. He said that's completely doable. You will all hear me scream, I'm sure, when that smile comes.

So we spent five days learning the technique, and it was tremendous. Ben had a great time, with the kids, the trainers and the staff. We'll go to Hollywood, Florida for sessions every twelve weeks with the trainers, and then back to Montreal each fall to see Leonid again.

I have a very different feeling after doing this. I don't quite know how to explain it; I normally have come back from our journeys with a burst of hope, but this is a more subdued feeling - it feels like more of an actual plan.

And after ABR was over, we got to visit Montreal for a few days:

It wasn't quite winter yet in Montreal, so that was good for us Florida folk. It was unseasonably warm, apparently, but still pretty cold for us. And they speak gibberish - or celsius - so it kept being 7 degrees or 10 degrees or something like that. HUH?

We visited the Botanical Gardens and Insectarium, which are very cool, even if you're not 6 or 3 years old. It was mostly a good experience, except for the few people who had apparently never seen a child in a wheelchair and thought it was okay to gawk. GRRRR!

Since we were in Montreal on Halloween, we had to do something. We tried to ignore it, but there was no getting around it. Fortunately, Ben is a good sport. Unfortunately, Sam doesn't get much say in the matter (yet). We convinced Ben that being a tourist for Halloween is a perfectly acceptable costume - and he fell for it! (We owe him so big one day.) So we got the boys Montreal shirts (we would've anyway) and crazy Canadian hats (don't know about that), put the camera around Ben's neck, gave them shopping bags and tourist maps, and off we went. We were staying in a gorgeous neighborhood - stained glass and stone lions galore - and the natives thought it was a hoot.

Our first day to set out on the town, we realized the wheelchair had a flat tire. Uh oh. I normally carry Sam most everywhere, but I couldn't do that. We thought we'd be stuck, but my dad suggested it might just be an innertube - sure enough, a bike shop repaired it.

Sam and I waited on the steps of Notre Dame while Ben and Tim fixed it and we were on our way. We also went inside Notre Dame Basilica, which was absolutely overwhelming. I was totally moved by it - I can't even explain. Celine Dion was married there (we weren't invited) but we're pretty sure they don't brag about that. She does, though. We lit a candle for Sam before we left.

We had an artist sketch a picture of the boys down by the waterfront. He started when the sun was out, but the sun set fast and IT GOT COLD! Sam is whole in the picture - no trach, no feeding tube. Sigh.

And we saw FALL! It was great - the colors, the cold, the smell of fireplaces. Ben was emailing his friends at school every day (first grade is a very different place these days) and was very excited to tell them about the fall colors.

We will be going back to Montreal each fall for ABR therapy to see Leonid so he can check Sam's progress and tweak his program.

And check that smile.