How Much (Therapy & Equipment) Is Too Much for Your Child with Disabilities?

Yesterday we went to the Orthotist. No, not the Orthodontist for dental braces. Not the Orthopedics doctor for a broken arm. For those of you who don’t regularly visit an Orthotist, like we do, let me explain. An Orthotist is a person trained in creating braces of all different types, as well as artificial limbs. These devices help with posturing, stabilization, and overall functionality in life.

We go to the Orthotist often. It started when Nathan was itty bitty and needed braces on his feet. Not only were they helping create stabilization, but possibly also helping the bones in his feet grow appropriately so we can avoid foot surgery. (Or is it feet surgery?) I wrote about it a long time ago.

I generally like going to this specialist because it’s quick and easy. Nathan is growing rapidly and we need to get new braces and shoes about every six months. Then, we’re on our merry way. Even though Nathan isn’t walking independently yet, he keeps making little gains and it all seems worth it. It has been tremendously satisfying to watch him become for stable on his feet. I don’t attribute the braces to his success fully, but I do believe they’ve been an essential part of his journey.

Yesterday, we rolled out of the office with ALL the gear.

Nathan switched from small foot braces to AFOs (Ankle/Foot Orthotics), which go all the way to his knees. He got new Benik gloves to prevent him from putting his hands in his mouth all the day long. And, he got a full core support system by Theratogs, called a DragonFly TLSO. (Don’t even ask me what that abbreviation stands for.) It’s a lot.

It’s a lot on top of a lot, which kept me from falling asleep last night. I was trying to imagine how much extra time we need to get him ready in the morning? How we will be able to check all the new gear throughout the day to ensure he doesn’t get any pressure ulcers? And how will we easily cath him and feed him through his tube with all that TLSO system wrapped all over him? I only know the answer to the last question and that is, it’s not easy.

Having a child with multiple disabilities and medical complications obviously is hard. But is it worse?

This question has been bouncing around in my head lately. I’ve heard others talk about how having a child with special needs is not worse, it just takes longer. Or, it’s not worse, it’s just different. Recently, I had a conversation with my neighbor about how are we to define what’s good and bad when it comes to painful or difficult things in our lives? As one who mostly defines my life experiences according to how I feel about them, this would easy be a big, bad thing for me. But aside from the fact that it’s a major inconvenience and the whole getup makes him look ridiculous (see above pic)–which in the whole scheme of things shouldn’t be a big deal but it is to me–is it a bad thing?

Aside from ALL of that, is it a bad thing?

Since I don’t know the outcome, I can’t answer that question. I don’t know whether or not all of this super expensive gear will help Nathan walk. I don’t know if he will eventually stop sucking on his hands (I’m thinking “no” on this one.). And I don’t know if this core support system will help straighten his rightward lean and the curvature of his back.

The only thing I can do is the next right thing. Not all the things. Just the one next thing.

Nathan’s nurse and I will slowly phase him into this gear. First, we start with the gloves because he’s used to these. Second, use the AFOs in short stints of time so that he can build up tolerance. And finally, I’m not sure what to do with that Dragonfly thing. Personally, I’d like this dragonfly to fly away, but that’s a conversation I’ll have later today with Nathan’s PT.

One step at a time. One day at a time. One therapy at a time.

If I knew with absolute certainty that these orthotic devices would help strengthen and support Nathan, I’d probably be more on board. I’m jaded because I’ve been on this merry go round for so long and I want off.

I keep thinking that one day we can, and will, back off on all of the extras–extra therapy, extra equipment, extra meds–for Nathan. But even though I’m tired, I don’t think now is that time. I trust I’ll know when.

So who can say whether or not you are giving your child too much or too little therapy. Or equipment? Or education? Or medication? You can. And you alone. (No pressure.) But, just like me, I believe you will know when, what, and how to.

Here some things to help you gauge how much is too much and how much is not enough:

Create systems to help you streamline as much as you can (AKA multitasking). You’ll know what works for you. For us, for example, one person puts Nathan’s braces on while he’s in his feeding chair and the other person is helping him eat a little by mouth. It saves time and effort. We time tube feedings with meds so that it’s not more supplies to wash. This also why I love home based therapy so much. It cuts out travel time and we can easily care for Nathan’s medical needs in between, and sometimes, during his sessions. If you can’t find ways to streamline, chances are it’s too much and you need to back down.

Surround yourself with a couple of trusted support people. Your spouse, close friend, or even your child’s long term therapist, may be able to provide you with outside feedback. My husband is just enough removed from Nathan’s everyday care, that he can sense when I’m getting in too deep–over committing or over fixing. My truth-telling friend also lets me know if something is completely unreasonable or ridiculous. I love when Nathan’s therapists are also moms, because even if they don’t have a child with disability, on some level, they get it. One in particular tells me, “I understand if you can’t do this…” I love her. Not only will the right support person help you know what to add and what to lose, but he/she will help remove the mom guilt.

Just do the next right thing for that moment of that day. This next right thing concept is a podcast and a book. (Love them and endorse them both by the way.) It’s also a rule and a prayer to live by. I’ve been asking, “God, what is the next right thing here?” and implementing that “next right thing” more and more lately. It’s taking care of some of the guilt I experience from trying to cram everything into every single day.

Somehow a visit to the Orthotist sent me down the rabbit hole of questions as to whether or not I am actually helping or unintentionally hurting my child. Just because something, like foot braces, worked so well for so long, doesn’t mean I just keep plowing ahead with more and more orthotic equipment.

It is important for us as moms of special needs kids, to regularly reflect on what we can streamline into established procedures, what our people say, and whether or not we can break it down and do the next little step. Know that in the end you are doing the best you can.

Whether Nathan ends up looking ridiculous it doesn’t matter. Only time will tell if we get the results we were hoping for and then we can adjust, or not, accordingly.

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My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!

#Medicalequipment #therapy

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