By Lisa Viele
Strollers and wheelchairs are two pieces of equipment that parents of children with mobility issues must choose with care. In the past 11 years of caring for our daughter, Lizzy, who has cerebral palsy, I’ve learned that the time and effort I put into making these selections pays off big time in a happy back and a happy child.
When Lizzy was young, we used a regular stroller. But when she hit 40 pounds, we knew we needed an upgrade. Lizzy would lean forward, thrust herself back and kick against the leg rest. We knew that we needed a durable stroller that would be able to take that kind of beating. I also needed one that was light enough that I could take her for walks in. I loved to walk with Lizzy. I would put her music in the bottom of the stroller and she would enjoy our two-hour walks. I also needed a stroller that I could easily get into and out of stores. It needed to turn on a dime and wheel easily around racks of clothes and shelves.
With those requirements, I set the bar pretty high for finding the best stroller for our daughter. I knew that we were done with umbrella strollers or any other kind you could find in a local store.
The Search Begins
I started with the Internet first. I was surprised to find that there were a limited number of strollers out there for her. It seemed like this was the progression of transportation devices: regular stroller, umbrella stroller, then came the wheelchair. When you type “stroller” into a search engine, it doesn’t even link special needs strollers. You have to look deeper.
When I did look deeper, I found Abilitations and Adaptivemall and discovered many more options. After reading about the various styles and their ability to hold up to the beatings Lizzy would be giving it each day, I decided on the Dreamer Design Axiom stroller. It was a good choice for us and we have had two of these strollers over the years. Our first stroller was a Make-A-Wish wish. When we were ready for our second one, we gave the first one to another family.
To pay for our second stroller, I first contacted our caseworker at the Department of Disabilities and Special Needs to see if Lizzy’s Medicaid would pay for it. It did, because we wrote it was “Lizzy’s main mode of transportation, other than a vehicle.”
Moving into Wheelchairs
Lizzy has had three wheelchairs. She started school when she was three years old. She was small enough to carry so a wheelchair was not necessary. But in a matter of two years, it was necessary.
In order for Medicaid to pay for a wheelchair, we first had to obtain a prescription from our pediatrician stating that it was medically necessary. At the time, Medicaid in South Carolina would pay for a wheelchair every three years but this varies from state to state.
Next, we thought about our priorities. We decided when we started looking that price was not the most important issue. Prices ranged from $178 (basic) to over $2,500. We looked primarily at how we would be using the wheelchair and how comfortable Lizzy would be in it. Since we would be lifting the chair into the back of our van, we didn’t want a very heavy one. (We opted not to have a ramp for our van. Ramps are priced between $400 and $1,000. We would still have to pay someone to install it. The ramp was too pricey and we were healthy and able to lift the wheelchair.)
Then we consulted a physical therapist to have Lizzy measured for her chair so that it would fit perfectly. Therapists can be very helpful when selecting a wheelchair. They determine how much support the chair must provide, how it will be propelled, and what special features and adaptations are needed. Our physical therapist was a key player with all the measuring that was needed to have Lizzy fitted for her chair.
When it comes to choosing the right wheelchair for your child, take into consideration the following variables:
Electric vs. Manual—While an electric power chair is popular among kids, a more lightweight manual wheelchair might be more easily transportable. For a child who has good upper body mobility and doesn’t need a lot of back or head support, a manual chair may be the best choice. Also, lightweight sport models are easy to maneuver by hand, and can provide a very active child with the ability to participate in most physical activities.
Transporting It—Something that most parents and caregivers must deal with when they have a child in a wheelchair is transporting it. Most pediatric wheelchairs do not fold the way that some adult wheelchairs do, so it’s not as easy to move them from place to place. Since pediatric wheelchairs are too large to put in a car’s trunk, wheelchair lifts are often needed, as well as vans that can accommodate the lift.
You can purchase accessories for a wheelchair, including cup holders, backpacks or bags, lights, arm rests, and also a variety of cushions. You can also have your child’s name embroidered on it.
Another option is to purchase a wheelchair that fits your child now and then buy a larger chair as your child grows. Or you can buy a wheelchair that can be adapted to “grow” as your child progresses. For example, you can start out with a chair that has lower speed controls, and then exchange them for faster ones as your child grows and can handle a more powerful wheelchair. This will be a decision parent(s), therapist(s), and doctor(s) will make as a team, along with the child if he or she is able.
Making Our Choice
We knew that Lizzy would not be ready for a motorized wheelchair because she was not developmentally at a stage where she could comprehend the dynamics of the chair. We needed to have one that we could maneuver ourselves. We opted for a manual chair that did not grow with her. Since Medicaid was willing to pay for one every three years, we could use it until she outgrew it and then pass it on to another child who needed it. We are a family that likes to pay it forward and so we’ve passed on all our adaptive equipment as we’ve outgrown it.
Also, we wanted Lizzy to be as comfortable as possible, so we selected cushions that were not overly soft or too firm. She needed to be comfortable sitting for long periods of time. A cushion that is too thin or too soft does not provide enough support.
With Medicaid, it took about eight months for her wheelchair to arrive. Yes, it was a long wait. But, when it did come, we were ready. A representative from the company brought it to our home and adjusted it to fit Lizzy. They brought the instruction manual and warranty (make sure you fill it out and send it in!) and talked about the features of the chair.
One of the best features of our chair is that it came with a sun cover. Lizzy was excited too. She loves the breeze in her face and the warmth of the sun. We walked until the sun went down that night. We were so happy for her. When it came time to move to just a stroller, we were happy to give it to Lizzy’s school for other children to use and enjoy.
If you get a wheelchair that grows with your child, the representative will show you how to adjust it. In our experience, representatives should spend about 45 minutes to an hour with you making sure you are comfortable with the chair. Make sure you get contact information in case you have questions.
Lizzy used a wheelchair until she was good and ready to walk, which came when she was six years old. Today, she does not use a wheelchair. A stroller seems to work best for her at this time.
Our hope is that the current stroller we are using will be sufficient for her needs. We are always looking toward the future and remain optimistic that Lizzy will continue to gain strength in her walking. A wheelchair will provide more back support if she does eventually stop walking altogether.
For more information about wheelchairs and strollers, here are some helpful links:
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