Adaptive Equipment for Jessie: Providing Medical, Educational, and Social Support
Last updated: February 2022
Back in the 1970s, we found out that our daughter, Jessie, had spinal muscular atrophy [SMA]. A respected doctor told us that we should “put her away” because she was severely mentally challenged.
We didn’t believe that one bit and took her to another pediatric neurologist. He disagreed and correctly diagnosed her with spinal muscular atrophy. "Putting her away" was never a consideration. My wife and I left the doctor’s office, in shock.
Making a plan for the equipment and treatment needed
About two weeks later, we started to plan for Jessie. We wanted her to be the best that she could be physically. She was part of the family. She deserved to get the best treatment possible. Hence, all of us started on the journey together.
We had most of her adaptive medical devices available at home from a medical standpoint. We had a Clinitron motion bed, liquid oxygen, portable oxygen.
Additionally, we ordered a suctioning machine, pulse oximeter, Ambu-bags, etc. She was trached and was unable to speak. Unfortunately, she was not able to tolerate being capped with a speaking valve. Hence, a bell was placed nearby in order to signal us.
Limited independence and mobility
Jessie, a petite girl, used an umbrella stroller for several years instead of a wheelchair. She went ice skating with us in it. By experiencing ice skating, she experienced the wind blowing through her long hair while gliding on the ice.
When she started kindergarten, we ordered a customized pediatric wheelchair. However, it was not an electric-powered wheelchair. She had to be pushed in it. Her independence was still limited.
We had other equipment such as parallel bars, as well as braces, a standing table, a seating device, exercise balls, etc.
The school years
Our family philosophy was to mainstream Jessie as much as possible in all areas of life and growing up. She was mainstreamed throughout her school years.
When Jessie entered first grade, we ordered a customized pediatric electric wheelchair. At last, she felt free!
Her friends liked to ride safely on the back of her wheelchair! The children at school were thrilled to be her friend and they began to socialize together. In addition, she was able to go by herself through public school.
Socially, a new door opened. She experienced the freedom of being able to get around. Her friends were reciprocally welcomed in our house as well as inviting her to their homes to play.
When her girlfriends dressed in the latest fashions, so did Jessie! They had the latest style shoes, as did Jessie, even though she was unable to walk.
When the family went bowling, she used an aluminum stand that would be placed in the alley, so she could lightly push the bowling ball. She was frequently was able to get a strike! That impressed her friends when they bowled with her. Her friends started inviting her to parties and lunch.
Supporting children in an able-bodied world
SMA type 2 children are bright and alert. They need to keep on developing their intellect as much as possible during their growing years.1
In my opinion, children with type 2 SMA should be allowed to do as much as they can physically and mentally to aid in their social, emotional, and psychological development. My view on mainstreaming children with spinal muscular atrophy is that it affords them the ability to better function in the able-bodied world.
Have you found yourself facing accessibility challenges lately?
Join the conversation