April 22, 2013

Reader Question: Mobility Devices

Looking back, there are several things I wish I had done differently with Bertrand. Despite having experts at our disposal, limited knowledge and limited time--mine and that of the experts--kept Bertrand from simple improvements to his well-being.

Everyone mentions the importance of weight bearing through the legs.  Every doctor and therapist emphasized standing from an early age.  *No one* emphasized weight-bearing through arms.  Maybe I could've figured that out myself, but at the time I was drinking from the figurative fire hose.

Five years later, my son has malformed forearms.  (I lovingly call them his little chicken wings or t-rex arms.)  It's nothing overly obvious, but it is an impediment to proper and full use of his arms now.  And the window for fixing them is pretty much closed.  Although you better believe we make sure he weight bears through them now!

That brings me to an email I received this morning:
"I have a question regarding mobility devices.  My son is at the point where the stroller we purchased before he was born is no longer suitable for his low tone or his growth spurts.  He is still only 17 months old and would fit in just a regular stroller but the ones I have been looking at are in the $200+ range and honestly will only be useful until he gets to a certain height or weight that is lower than I would have liked.  I have an appointment with the Wheelchair Clinic on May 14th but from what I gather is that they will try to bill my insurance and I really do not want this to happen since I know my insurance will only cover one mobility device in a 5 year time frame.  I do not think my son is at the point for a wheel chair yet but a special needs stroller would be really nice to have.  I am so lost when it comes to all of this.  When I google it I am bombarded with hundreds of options and really expensive prices and have no idea what would be the best option to make for right now and to use until he needs a wheelchair (which he will most likely will in the future).  Do you have any thoughts or opinions on all of this?" 
People with great experience in mobility devices read this blog, so please comment if you can.  :)

Briefly, the mom above has an adorable son with low tone and global developmental delay.  I can only comment on the mobility solutions that we adopted for Bertrand, and not all of those were good.  With mobility devices there is simultaneously a ton of information and almost none at all for parents.

We kept Bertrand in a stroller until age three, at which point he transitioned to a wheelchair for the school district.  We instantly regretted keeping him in a stroller for so long.  Granted said stroller was a fantastic, well-rated, highly-recommended Maclaren Techno XLR Stroller (15lb. stroller with 55lb. capacity), but Bertrand has low tone.  For a kid with low tone, it just wasn't supportive enough for him to sit in it for long periods of time.  He ended up developing scoliosis in part from that stroller.

And then, because we apparently live between a rock and a hard place, I am not entirely sure that the 69 lb. Iris Zippie wheelchair he got was the right one for him.  When we went to the Abilities Expo in Atlanta, we saw *dozens* of pediatric wheelchairs.  Here in town, the folks at our wheelchair clinic are only experienced with a handful, so those are the only ones they recommend.  The Iris Zippie is pretty much the SLC pediatric push wheelchair.

No matter what mobility device (stroller, wheelchair, walker, gait trainer, etc.) you end up getting, I recommend taking your time.  Ask around.  See if there are ways that you can try before you buy.  Or look into getting pediatric equipment second hand.  Kids outgrow their stuff.  There are FaceBook, Yahoo, and other special needs groups where you can speak with other parents, get their advice or see if there is equipment to borrow or buy.

Like the mom above, it's important to know what your insurance does and doesn't cover.

Back to my original point, here are some simple tips that could help prevent, lessen, or counteract scoliosis for low tone kids that I wish I had known much sooner.  (In large part thanks to these measures, Bertrand's spinal curve improved to the point where he no longer needs to wear a back brace.)

  • Switch the side their car seat is on from time to time.  (Most kids lean toward the light.  If your kid is in the car any significant period of time, this could contribute to a curve.)
  • Change the side/direction your child sleeps in bed.
  • Carry your child on the opposite hip.
  • Feed your child with your opposite hand/from the opposite direction.
  • In the stroller or carseat, bolster your child's neck, back, and hips with rolled up blankets, shirts, neck rolls, whatever it takes to help them look aligned.  (If you wouldn't want to sit or sleep like that on a plane for hours, it's safe to assume it isn't good for your kid either.)
This is just our family's experience, and we are not medical/developmental professionals.  Hopefully, others will chime in and offer more perspectives.  :)


  1. I think we can all point to things we *would* have done differently. We are thrown into this crazy new special needs world and "experts" are thrown our way and we (of course) take their wisdom at face value in the beginning. . . what else can we do?? I regret the heck out of listening to Sammie B's first PT and NOT trying her in a gait trainer sooner. (You can read a lot about that on my blog). I think she did a great disservice to Sammie in that respect.

    Sammie is 4.5 and we've not yet gotten a wheelchair. We probably should have, but our journey has been a little different in that every doctor, every therapist has always told us they believe she will walk independently. Her tone isn't so low that being in a regular stroller was bad for her - she's always done great in our strollers. And, when her little sister came along in 2011, we knew we'd need the double stroller/double wagon more than anything else, so we put off the WC a bit longer. That said, while I think a stroller is probably fine for most kids until age 3 or so (unless their seating needs are such that a regular stroller is causing harm, e.g., scoliosis, etc.), I think from age 3+, if a child isn't yet walking or using a gait trainer well, a WC is needed . . . we fought it and used a lot of creative mobility solutions (a trike, a wagon, etc.) that we thought were more age-appropriate than a stroller, and those have worked. But, at bottom, other kids see strollers as something for "babies" and you don't want your child's peers seeing your 3 or 4 year old as a baby just because of mobilty issues. That's my thought now. Hindsight is always 20/20.

    Also, to the extent that you have a child that MIGHT be able to use a power chair, the earlier the better for them to learn to drive, and current research (unlike that the old stupid PT we used cited) is clear . . . giving a child independent mobility -- in whatever form -- even power-chair assisted mobilty -- does NOT decrease the incentive to walk, but does the opposite. Offering your child an independent form of mobility has so much to offer in terms of confidence and social and cognitive development. We've learned that just now trying a power chair at age 4.5 is "late" to some . . . the SMA community, for instance, advocates getting kids power chairs before age 3. Just some food for thought! and, my own experience (typed quickly at 1 am!). I do think that being told your child likely won't walk versus most likely will changes the calculation (definitely did ours) but looking back, I think I wish I'd just met Sam "right where she was" in each moment rather than thinking about what she "might" or "probably would" do later and holding back on getting her equipment based on that.

  2. I have nothing to add about wheelchairs but wanted to say first of all, please don't beat yourself up about his arms! Considering the absolutely astonishing amount of things you *did* manage to do for him (and what good shape his legs are in now), it would be crazy to expect you to anticipate every contingency, especially when the professionals couldn't even do it. After all, it's not hard to see that legs have to bear weight, but we don't tend to think of arms the same way, as they're not supporting our bodies; certainly it had never crossed my mind until I read your post just now. Second, I watched B's video and he's grown so big! He's such a handsome 5 year old, and he looks so excited about walking. I was thinking of you the other day while putting one of the "Little Sister" shirts you sent on Phoebe and realized I hadn't checked in for a while, so it was lovely to see B stomping along like that :).

    1. Thank you, Marian. :) Your kind words mean a lot.
      I hope all is well with you, A and the kids--I bet Phoebe is so big!
      Are you planning any trips out our way? XO --C