Parenting seems like one big decision after another. Add in children with disabilities, and the decisions double. Each new diagnosis, milestone, or even setback brings different decisions. With my daughter, who has multiple diagnoses and complex medical needs, I was very used to making these decisions and accepting accommodations.
However, one of the hardest ones for me to decide on was getting her a wheelchair. I think the reason it was hard in the beginning was because I thought it meant we were giving up. For her, she could still walk with her walker and AFO’s (ankle foot braces), so I did not understand the need for a wheelchair. Her doctor and therapist were recommending it for long distances and outings.
I made all kinds of excuses:
She could still fit in her stroller, so we could use that. The wheelchair would be too confining. It would be too heavy, bulky, and not fit in my van. She would not like it. It would be too hard for her to use.
I was not going to accept this device.
I started to notice that the stroller made her sit weirdly and affected her posture poorly. After walking too much, she would cry or was so tired that she didn’t have the energy for any other activity. I finally decided it was time.
I found out that I was wrong. Getting a wheelchair did not mean she would be “stuck” in the chair at all times. Also, there were many models to choose from. Sizes, weights, fold-ups, or wheelchairs that came apart were all options. The seating system itself was custom ordered to fit her and her body style. More supports for scoliosis could be added as well.
Getting her the wheelchair was a very good decision. Instead of it being confining, it did just the opposite. It conserved her energy so she could have energy to do other things like eat and walk around the house without getting so exhausted. It also sits her so nicely her posture is so much better. That has to be better for her scoliosis. The best outcome is that she loves her chair!
You can learn more about equipment on this website under Supplies and Medical Equipment for Children with Disabilities.
Palliative care is about making the most out of life while supporting complex patients and their family. I am so glad we found them.
Parents go through many emotions when they find out their child has a learning disability.