I have questions about how to help my 8yo son, who was born with spina bifida. He uses a wheelchair or crawls, paralyzed from about the hips down, some muscle weakness/nerve damage in his core too, more on one side than the other. So how can we encourage vestibular, sensory input as well as strengthen what muscles he can use?
Hi, thanks for reaching out. Does your son have a PT he works with? That would be a great place to start. Without knowing him specifically I would encourage movements that allow him to roll, spine, swing. Also ‘wrestling’ or ‘rough-housing’ in whatever way that can look for him. Does that make sense?
Hi @Momto10, thanks for joining our community!
Is your son under the care of a PT and OT?
You can ask them about using a stander-even changing positions is helpful for vestibular input. Rolling on the floor is great as @Starfishtherapies suggested. Do you have swings in your local park that are handicapped accessible? Those are great as well for vestibular input. Check with your son’s team to make sure these suggestions are appropriate for him.
I alike playing balloon tennis with kids that age-it’s easy to play in a wheel chair and helps engage the arm and core muscles for strengthening. I’ve found that at that age they can also use therabands for strengthening activities so these are some ideas to run by your son’s medical team.
He does not have a PT right now, his moved and the practice in our small town doesn’t have any other pediatric PT. None of the Adult PT are comfortable with working with him, and they don’t have much of a setup for pediatrics. The nearest place with a solid pediatric PT is an hour away at the Children’s hospital, has a 9 month wait list currently. And I have 10 kids, 9 still at home. The hospital won’t allow siblings along, so I would need a sitter for 3 hours every week for 8 kids. Still trying to figure that out while on the wait list.
All that to say, I’m open to ideas for sure!
We can’t use balloons due to latex allergy precautions (more than 70% of kids with Spina bifida will develop a latex allergy by their teen years).
But we’ll adapt.
There is an adaptive swing at a park, which we can do in other seasons, but not right now (25F today).
Any suggestions for equipment/supplies to invest in for our own home PT setup? For example, we have wood floors, so where could I find a large tumbling type mat?
Online is a great place to look for a large tumbling mat or you can use couch cushions/crib mattresses. Here’s a fairly inexpensive one on my amazon page. Where are you located? There might be places in your state that do virtual therapy so that you can get ideas. We do offer a consult as well to give suggestions for play based ideas.a
You can also use a towel or sheet or ikea bag and depending on how much control he has (can he sit on the ground?) you can pull him around on it. I have a post when my guy was little on his belly I also did it when he was a little older in sitting but can’t find the post. You can use a therapy ball and do seated bounces as well as moving around in all directions. Hope some of these ideas help.
Thank you for links and suggestions! We are in central Ohio, an hour East of Nationwide Children’s Hospital, where he has all his doctors/specialists.
Yes, he can sit, and army crawls too. An idea of things he is able to do strength-wise - climb onto and off of the couch, a chair at the table, or in and out of his wheelchair. (No use of legs, just all upper body strength). When sitting he can balance without hands and do things close by, but if he reaches up/out too far he loses his balance and has to catch himself with a hand. His coordination is not great for tasks like catching a ball, (gross motor planning), but he can do fine motor like writing with a pencil or building with Legos.