At long last, it has arrived!
Two months and a hefty co-pay after we started this process, Sarah Kate is now the proud owner of her very own, not-a-hand-me-down, well-fitting custom wheelchair. You’ve seen the old (loaner) chair in photos when we were at Disney and at her band debut but I thought a closer look might be in order so you can REALLY appreciate the new one.
See that footplate? Orange pool noodle and chevron duct tape.
Sarah Kate’s therapist, who rounded up this loaner chair for her, adjusted it as much as possible but there was just no way to raise that footplate enough for her feet to rest flat. Since it was too big, it was also a little top-heavy – not normally a big deal, but with a backpack hanging on the back? Not good, and it didn’t have anti-tip bars to keep it upright, either.
The seat back was also a very basic sling type – not supportive at all. I forgot to take a good photo of it, but you can sorta-kinda see it in this pic from a couple of months back:
But the new chair? Lumbar support! Perfectly positioned footplates! Custom color chosen by Sarah Kate herself!
Colin from National Seating and Mobility spent a little time making adjustments here and there and showing us how to do things like break it down for traveling. After that, it was time for a little road test. Or hall test, anyway. 🙂
How’s this for a comfy-looking seat and backrest? Worlds better than the square cushion and basic rectangle sling she had before…
I think she looks like a wheelchair model, don’t you? 😉 I kid! Mostly…
I’ll be honest – I’m still not super happy about the chair. A trip Walt Disney World or a football Saturday at Jordan-Hare Stadium are one thing, but school is something else. For so many years, I drove the car line, deposited her at the school entrance, and drove away. It was a given that Sarah Kate walked. She may have needed a little help every once in awhile, like on field trips or during fire drills, but she was independent.
The wheelchair is hard for me to swallow, and yet … I’m the one who pressed for it. I want her to walk (and run!) on her own, without need for an assistive device. But what I want more is for her to be independent, and for those times when walking isn’t practical, I don’t want her to be stranded or dependent on someone else. The wheelchair will take care of that issue.
But accepting the chair feels like accepting an indefinite regression.
So I guess I have a love/hate relationship with the chair. I’m grateful for it and glad that we have it, but I hate that we have to have it. It’s not that I have a problem with wheelchairs, it’s that we made it almost twelve years without one.
Does your child use a mobility device? How do you feel about it? Tell me in the comments!
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The Deets on the New Chair:
- Make/Model:Â Ki Mobility Tsunami ALX
- Color: Granny Smith Gloss
- Options: Bolt-on Push Handles, Transit Option, Adjustable Height Rigidizer Bar, Aluminum Angle Adjustable Footplates, Pneumatic Rear Tire with Airless Insert, Rear Anti-Tip Bars, Velcro Adjustable Calf Strap
- Seat Back: Jay Products J3 Mid-Thoracic
Feel free to ask me if you want to know what any of that means. I have a vague understanding of it all. 🙂
Think about the chair as a booster amplifier for her. And as safety when she is too fatigued from long distances or really crouchy days. The wheelchair is a tool for her, and picks up the slack. She can walk behind it when she needs to do both. It was also very well chosen, it’s a beautiful color. She chose it to boot. I like that shade of green. Yes, I understand your reservations. Some days, walking is not so bad, other days if I don’t wheel I will get little done. So, overall you did the right thing. Don’t see it as regression. See it as opportunity she does not have otherwise. And as independence. But she must still work hard at keeping her skills on foot too. Balance in all things.
I’m so glad you commented – I need to hear from people whose lives are on a parallel track to Sarah Kate’s. You’re exactly right. It’s a tool that I’m glad she has, but she has to keep working so she doesn’t lose (and hopefully regains) skills.
As for the color, I told her to pick her top three choices but I had the opportunity to veto two of them. The green was my least favorite of the three she chose, but I didn’t tell her that because I could live with it. Now that it’s here I actually like it!
I see her in a chair that suits her. to me she looks like the athlete she is-with more opportunity to go places it is more difficult for her legs to take her.
Love this!
I have that chevron tape.Green is my favorite color. Accepting a mobility device is progression, not regression. It is acceptance of one’s personal limits.
Thanks. You’re right, of course. I should probably have been more clear what I meant by accepting regression, though. She has regressed from where she was 18 months ago, and while the surgery has helped her, she isn’t back where she was. The current status quo IS regression, and I don’t want to accept that, chair or no.
My best friend has spina bifida. We’re now in our mid 20’s and her mobility has changed drastically since we met over a decade ago but she lives in her own apartment with a fat old cat, made the dean’s list at school (where she gets around mostly unassisted) and takes care of all her own medical needs. While the current situation may feel like regression, Sarah Kate has such an advantage for the rest of her life in that she is active and does things she maybe was never “supposed” to do from a medical standpoint. You’ve given her the opportunity to do these things early in her life and develop the characteristics that make her the awesome kid she is. No matter what tools she chooses to or needs to use throughout her life, she will figure out how to make it work best for her. That’s priceless.
Great point, mika. That’s one thing Sarah Kate has always done – found a way (or workaround) for whatever she wanted to do.
Hi Andi,
I don’t know why my comment wasn’t posted on yesterday, but nevertheless here’s what I want to say.
As a young woman with CP, I use a chair for aid with long distances. I had to get this chair at the tail end of my senior year in high school. I was hesitant because I am such a “I’m an independent woman, hear me roar!”kind of person. However, I ended up accepting the suggestion because places like the mall were touture. Navigating the halls of high school was manageable, but at the mall it was either use the chair or have noodles for legs. I was wise enough to take the chair with me for undergrad because I knew my campus was too much for me. To this day, I use that chair. I recently took it with me on a family trip to D.C. and my extended family LOVED it because nobody likes noodle legs…So, I’d ask Sarah Kate how she feels about having to use the chair.
Thanks so much, Miracle! Not sure what type of CP you have, but sounds like you could be similar to Sarah Kate, or possibly somewhat less affected (and Sarah Kate is VERY independent, too!) I’ve so enjoyed reading the comments on this post from people who use wheelchairs, rather than just parents, because your voice is so important for me to hear and understand.
I haven’t said anything negative about the chair to Sarah Kate other than to warn her that she has to continue to exercise and stretch so that she doesn’t end up in it all the time. I think she generally likes it, but she also doesn’t want to be in it all the time. Places like the mall, Walt Disney World, this cruise we’ll be going on soon, etc., are all times when she’ll need the chair, and I know I’ll be very happy we have it then!
Look how beautiful her posture is in that chair! Amazing what a little custom fitting can do.
You mentioned that the chair has the transit option, but I don’t see the rings. Maybe Ki does something different than the others.
I hear so many wonderful things about those Jay backs, they should build office chairs!
Lovely color choice.
I agree! It truly is amazing the difference between the loaner chair and this one. The rings for tie-down are on the side just above her feet – you can sorta see them in the photo of just her feet but in the other photos they are kinda camouflaged. She won’t normally use the lap belt so it’s bundled up in the back.
I see them now! LOL
I am glad the belt is there for when she needs it, while probably rare, it’s just good to be there.
You’re quite welcome! I have spastic diplegia CP. I appreciate this blog….gives me some kind of window into how my grandmother may’ve felt in my early years. So thank you! Sarah Kate may have a different experience than me, but I could probably give her some words of encouragement to hang in there. Yes! Streching and consistent exercise is so so important! Although, I have to admit that I have to improve on those areas myself….simply because if I don’t I could end up as you stated , when I can be more proactive. So there’s the motivation for me 🙂 Yeah, my chair isn’t my best friend, but I’m so grateful for it . It saves me from over exertion often. Sarah Kate is a real trooper though, and a beautiful young lady.
I went to Walt Disney World when I was 14, and didn’t think to take my wheelchair. I’ve regretted that since then. Hope you all have fun!
There were loaners at the park I could’ve gotten, but now that I have my own, I’m taking it if I ever go back
Well, I definitely you (and all the others) who give ME a window into Sarah Kate’s mind. I know a lot about her, but I can never BE her, so I’ll never truly know what goes on in her mind.
As for Walt Disney World – I’m actually looking forward to the next time we get to go. One thing I always hated about the stroller (we used it as long as we could) and after that, the transport wheelchair, was how I had such a hard time talking to her while pushing her at the same time. Her voice would project forward, away from me, so I was always having to bend down to hear her or speak to her – now she’ll be able to just roll alongside us! It will also give me the freedom to take both kids by myself if I want to – haven’t ever been able to do that before!
And Mama doesn’t need to push! LOL Which really comes back to the freedom the chair will give when walking will be too much.
So true! Yeah, it’s a real positive for all of you all.
I completely understand your mixed feelings about the chair. My daughter is still very young (she’ll be four in January). We have a mobile stander, a gait trainer, an adaptive stroller, and a few other odds and ends. We are working on getting her an eye-gaze communication device. Each device is such a challenge to get–a sorting out of the options, dealing with insurance, waiting for delivery–that it feels like getting a new house. Each time I am excited, scared it will actually be the wrong thing, and struggling with how it may change our lives.
I think part of the reason it bugs me so much is that this is the first piece of equipment (not including braces) that she’s had that wasn’t a loaner or hand-me-down. In some ways, that’s exciting because it’s a custom piece made just for her, brand new and in pristine condition. But the downside, I guess, is that because all of those other items were loaners/hand-me-downs, they felt more temporary than this does – like they were each just a stepping stone to the next step. This doesn’t feel like forward progress in the same way those did, I guess.
That makes perfect sense. It is exciting–it is also evidence of a reality that isn’t as apparent when you can think of something as not hers, but rather on loan. It feels temporary. For us the big thing was about visibility, when we started taking my daughter out in her new Pacer gait trainer (her first piece of made for her equipment). Before that I felt like we were under the radar in most cases (It’s old, but wrote a post on it if you are interested: http://thecutesyndrome.blogspot.com/2013/02/flying-under-radar.html). It is funny how things change, now, I correct people when they comment on her “stroller” being really “fancy”–I proudly say, “well, it’s actually more of a wheelchair.” It is so true that these things are “signs” of sorts–they are loaded with a lot of meaning and emotion for those of us on this journey. Best of luck with the chair…looks like pretty cool wheels!
Some advice. Recommended that you Google Whizz-Kids and “Wheelchair Skills Training” videos. SK needs to see these videos so she can learn to safely and confidently navigate her world when she must use wheels for safety or other reasons. And also there are entire worlds of sports options open to her on wheels too. She’s an athlete. I use wheelchairs for sports a lot. And have played basketball, tennis, distance racing, and much more on wheels. So, more for you to think about. P.S. I use The Comfort Company’s back on my own TiLite Aero Z wheelchair, and like it. I see she has their cushion. P.S. I have a special degree from my university, only offered to me. A Ph.W! (Professor of Wheelies) granted to me since I could handle a tray of coffee cups from office to broadcasting studio without a spill or a lap full of LP records or 10.5″ reels of tape (both media I still use). Sarah Kate is beautiful, growing up fast, athletic, and looks too much like you in many ways. You should be proud of your daughter and all she has accomplished, and she will do more and go to higher heights. She has the right parents to advise her and a good team of professionals to keep her in the right direction. And I admire how you are leading her through growth spurts. A tough time to be a CP parent. I can give you my perspectives on almost 51 years of CP, spina bifida, spasticity, and parallel tracks to SK and many similarities in how I move and she does. Never hesitate to chime in if something I can do is needed or desired. I hope one day to be fortunate enough to meet you, SK, Nathan, and Mr. Andi. It would be a pure honor and joyful.
Thank you so much. It is challenging for her and for us. I think it would be hard no matter what – adolescence just is – but not having a “village” for this particular type of parenting gig makes things even tougher. But she’s a tough kid, so I know she’ll make her way. 🙂
Oh, and thanks for the tip about the videos!