I remember the first time I took my daughter to the wheelchair clinic at the hospital like it was yesterday. Her orthopedic surgeon suggested we get Emma more support for her stroller and referred us for an appointment. I remember thinking how strange it was that the phone number he gave us connected me to the wheelchair clinic–surely we weren’t talking about a wheelchair for Emma?
I asked about strollers when I called, and they said, yes, they do help with strollers, so I made an appointment and showed up thinking we would be walking out with some sort of an insert for Emma’s current stroller.
The entire appointment seemed so surreal. There was an equipment vendor, a physical therapist, the wheelchair clinic professional, and a secretary, as well as several chairs in the room when we entered. They all seemed to be waiting for us. This was definitely very different than our stroller purchase at Babies‘RUs!
The entire appointment took over an hour, and I don’t think I really took in what was happening for most of it. When we walked out—just Emma and I—we had a signed copy of the order we placed for an adapted stroller. I was in a bit of shock, really, and told my husband when he came home from work that the clinic didn’t give us an insert for our current stroller. I told him we ordered Emma an entire new stroller that was like a wheelchair, and I broke down and sobbed. I think it was the first time I actually realized that Emma might not walk as soon as I expected.
Accepting the Need for Wheels
It takes several months from the time you select and order a wheelchair until the time you pick up the wheelchair. During that time, we started to adjust to the idea of a new supportive stroller that would allow Emma to sit up better and participate more in her world.
When it was finally time for Emma to be fitted and pick up her stroller, I took her to her appointment feeling quite emotional, and came out feeling a bit of relief. The new chair looked more like a stroller than a wheelchair, and Emma seemed much happier sitting in it compared to her baby store stroller. I remember thinking that maybe this new chair wouldn’t be so bad after all. The extra support in the seat helped Emma hold her head more upright, and I credit it for a lot of the head control gains she made when she was two and three. We even had a few people comment on how nice Emma’s stroller was and asked us where we bought it—a sure sign that it didn’t look too medical if fellow parents were thinking about this style stroller for their child.
Moving to a Wheelchair
As Emma grew it was time to consider a new mode of transportation. At the age of five, the adapted stroller no longer fit her body. Additionally, I was starting to get annoyed when people would look at the stroller and call Emma a baby. She was not a baby and it was time for a more grown-up chair. We decided to purchase a wheelchair that could be light enough for Emma to self-propel, and had the wheels configured in the front of the chair so she could reach them more easily.
She selected the color of the frame—a bright yellow—and we decided to have her name stitched on the back of her seat. We were ready to move on to this new chair, and, much unlike the purchase of the adapted stroller, were very much looking forward to receiving her new chair. The day we picked it up was a happy day. Emma loved the new chair and was grinning ear to ear for days while out and about in her new wheels! She liked all the attention she was getting. We decorated her chair for each holiday. Her favorite is Christmas when we decorate her chair with battery operated lights.
On to Power!
We were very happy with the manual chair, but Emma wasn’t as successful at self-propulsion as we had hoped. We began to look at other ways to give her some independent movement, and finally found that she was having a lot of success with a power chair that she drove with proximity switches in the head array. Emma had a long-term trial of a power chair, and learned to drive it short distances. She learned to maneuver through tight spots and became proficient at stopping before running into objects or walls.
We knew that a power chair would change our lives and would require pre-planning before going to new places. A power chair cannot just be popped up to go up a curb when a curb cut isn’t present. While a manual chair can be carried by a couple of people up and down stairs of non-accessible locations, this is not even an option for a 400-pound power chair. Additionally, it would require us to purchase a new vehicle to transport the power wheelchair. Despite these changes, we were beyond excited to see Emma blossom with the newfound independence a power wheelchair provided, and we decided it was time to go ahead and order a power chair.
The process to purchase the power chair was a lot longer than we had experienced with any other piece of equipment ordered for Emma. It was denied by insurance multiple times and involved multiple appeals. It was so frustrating to see that Emma finally had a way to achieve independent mobility, and it was looking less and less likely that we would get insurance approval for her own power wheelchair with a custom seat to meet her needs. Finally, we asked for an outside independent review of our request, and it was approved. It took less than two months from the approval to the time we received the chair, and we haven’t looked back.
Our family has come a long way since that first visit to the wheelchair clinic with our fifteen-month-old daughter. Then, we were scared and unsure of the journey ahead. Today, we have seen how the addition of a supportive seating position has allowed Emma to engage more with the world around her and help improve strength.
I am convinced that the early adapted stroller helped Emma gain enough head control that she can now drive her power wheelchair with her head. We no longer look at her chairs or wheels with trepidation, or wonder about when she will finally walk. We now look at her wheelchairs and marvel at how they have opened up the world for Emma and our family, and have made many adventures possible.