I’ve been giving some thinking about our plan for Nathan’s therapies / well being this year as it’s the New Year and time to look at everything with fresh eyes. Also, next month we will have Nathan’s first IEP meeting and the slippery slope of preschool and school district therapies will begin.
I could really use some advice from anyone that is willing to help.
Since we came back from Montreal and other travels I have tried very hard to balance regular therapies with ABR with the program from the Institutes. We’re also doing a ton of stuff nutritionally and trying to get a dive a day in a mild hyperbaric chamber.
My mom kindly pointed out she feels I’m doing a little bit of everything but not enough of anything.
I know what she means but I am so afraid to cut back on what we already have. It’s hard to know where to focus energy.
Right now we’re doing 2 hours of trad therapy a day (combined between PT, OT, ST, and DT), Hippotherapy 1x/wk, Yoga 2x/wk, and we’re trying to get in 30 min’s / day of each ABR exercise (1.5 hrs / day). Nate takes his nap in a mHBOT chamber. He’s on a GFCF diet and on a bunch of supplements. I am trying to fit in 1 institutes program / day although I’ve not given that priority. Whatever doesn’t get done by 5 pm doesn’t get done as he gets his evenings off to chill and hang out and play.
On top of that Nathan and I have been pretty much non-stop sick for the last 4-6 weeks so it makes it hard to keep running around and doing everything. The last 2 weeks we’ve given up and done nothing.
I’m afraid that if I stop one or another we may be missing out on an opportunity. But perhaps I am doing just that by not spending enough time on any one therapy.
I know it’s hard and no one can tell me what’s best and ultimately I have to decide but I would love any feedback anyone can offer.
Thank you for your help.
Hi, I remember Nathan from ABR in Montreal (I was there with my grandson). He has the most gorgeous eyes, hair, and smile.
I am truly impressed with how hard you are working on everything. You and Nathan must constantly be on the go and working. You are amazing.
I read “If I knew then…”. I think you have your answer, but are afraid to slow down just in case it is the wrong thing to do for Nathan. So, I will tell you what I told my daughter. You only have so many hours in the day and only so much you. You have to prioritize. I do firmly believe in ABR, the changes in Zane (my grandson) are amazing. His body is changing and with the changes he is gaining ability-not any of the “milestones” as my daughter says. But, as I reminder her, he is gaining the steps to the milestone. Those bits that most parents never notice but are just as important as the milestone itself. All of this is to say, that ABR is the base for the other therapies. If the underlying structure for arm or leg movement is not there, then moving your arm or leg forces your body to compensate and use muscles not meant for that movement (Zane was primarily using his hamstrings for leg movements, Leonid was very impressed by their size). PT, OT, ST, yoga, etc. all work with the skeletal muscles. Except the skeletal muscles don’t have the support they need. Think of it like a limp. Short term it helps you walk without pain, long term you end up with more pain in more places.
In the future, I firmly believe, ABR will be the base therapy with the others added later as the body is able to perform.
Be nice to yourself and just focus on ABR and the things that will go along with it. Before you know it Nathan will be in shape for all the “T’s”.
Sorry this has been so long. I will keep you and Nathan in my prayers.
Thank you VERY much for taking the time to share your thoughts with me. I REALLY appreciate it. It seems like the grandmas have a very clear vision of the situation and us moms get trapped by too much fear. I reread “If I knew then…” and then the answer became clearer 🙂 Other moms that I’ve talked to who started ABR at the same time we did have seen wonderful changes too. So it makes sense to make the ABR a priority and then later we can add if we have time / energy.
I’m so glad to hear Zane is also seeing good results from the ABR! That’s great!
So my evil plan will be to ask his therapists if they’re willing to do ABR. That way we can have a few more hands and a few extra hours every day doing ABR. Thanks for advice!