One of the challenges, when you are a special needs parent, is learning a whole new language. Seriously, in the world of special needs there are doctors, nurses, and therapists who will throw out acronyms or abbreviations (OHS, AFO, SMO, Gtube, PICU) that you have no prior knowledge of, and it is really like learning a second language.
For instance, when I first heard the terms AFO and SMO orthotics I was clueless, but now I feel so much more well informed and it was thanks to a parent who broke it down for me. Carrie is the mom to Samantha, who has Down Syndrome. Children with Down Syndrome often walk later due to low muscle tone and joint instability. Samantha was recently fitted for AFO’s and SMO’s to assist her in crawling and walking and her mom was gracious enough to explain it all. Her videos helped me understand AFO’s and SMO’s so much better.
There are all sorts of orthotics. The two I am somewhat familiar with are the two that my daughter, Samantha, wears;
AFO (Ankle Foot Orthotics) this brace helps hold the foot and ankle in the correct position. (Per Sam’s physical therapist, she needed it due to Samantha tending to tuck one leg (or scoot) rather than crawl).
These braces were recommended to us by Samantha’s physical therapist. Typically the physical therapist will send a script to the patient’s doctor and then contact an orthotics company to come out and size the patient.
The sizing was very easy and fast. It took roughly 10 minutes to fill out paperwork, get sized and pick out a pattern for the orthotics. Typically, it takes 30 days to receive the braces and the person who sizes the patient will also see how the new orthotics fit and may make additional adjustments if needed.
I was very concerned about how Samantha would take to having something on her feet. She does not like shoes or socks, so I assumed this would be a struggle. It took her about two days before she felt comfortable to “explore” the house with them on. It has been about a week or two since she received the orthotics and she is making such great improvements! Her crawling has become very fast and she is not tucking her leg up under her anymore.
The only complaint I have right now is finding correct shoes for her. The AFO makes it a bit difficult to fit in a typical shoe so we had to purchase Suresteps athletic shoes (this is the same company who manufactures the orthotics) and the package should arrive any day now.
Here is a video of Carrie explaining and demonstrating the AFO and SMO orthotics:
And here is a video of how well Samantha crawls with her orthotics on!
Carrie, her husband and 3 children live in Ohio. Samantha is their youngest and rocks an extra chromosome.
Samantha was born 6 weeks early and like many families, we did not know of the down syndrome diagnosis until after birth. It was a lot to take in initially, but my husband and I received nothing but love and support for our little girl. Some days I am still taken back at the unconditional love my boys show her, that is until she grabs one of their favorite toys. My oldest enjoys making and selling soap to raise money for our buddy walk team, Super Sammie’s Squad.
Sammie has had countless therapies and appointments with specialists but her development has really taken off over the last 6 months. She is now a typical (almost) toddler who is learning to stand and enjoys getting into just about anything she can reach. You can follow Carrie and Samantha on Instagram @findingourwaythroughsam
Do you have experience with orthotics? Any tips you would like to share? Be sure to comment below!
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