Imagine having to forgo a potentially life-changing therapy or treatment because there was no appropriate or safe space to assist your loved one with using the restroom. Imagine having a condition in which the proper therapy or treatment could greatly improve your quality of life, but you are unable to receive it due to the lack of restroom support needed to change yourself.
My name is Kisha, single mom and parent caregiver to my 19 year old son, Tyree aka Ty. Ty was born at 24 weeks gestation and weighed 1lb. 3 1⁄2 ozs. Because of the many complications that came along with being a micro-preemie, we were bombarded with diagnosis after diagnosis in his early years. Ty’s primary diagnosis is Spastic Quadriplegic Cerebral Palsy, the most severe form of CP. He is total care, meaning he is completely dependent on others for all of his activities of daily living. For example, he needs help with eating, bathing, toileting, etc. Ty also uses a wheelchair, has profound hearing and vision impairment, and is 100 % G-tube fed (nothing to eat by mouth).
The type of CP that Ty has causes him to be extremely spastic in all limbs. Secondary to his CP, is a condition called Dystonia which causes severe muscle spasms and involuntary movements. His spasms are not contained to one area, affecting his entire body. Dystonia can be extremely painful and sometimes hard to manage. Aside from taking different medications to manage symptoms, there are other ways in which people with these diagnoses can find relief. An alternative to medicine for Ty was Water/Aquatic Therapy. According to the Cleveland Clinic, Water Therapy is “any method that uses water to treat a variety of symptoms throughout your body” (Cleveland Clinic, 2022).
Pool therapy was recommended by Ty’s physical therapist. His therapy took place at one of our local YMCAs. With each visit, we began by sitting with Ty on the steps of the pool so that he could adjust to the water. After five to ten minutes, the therapist and I would ease him into the water where she would begin his 30 minute session. We would attend pool therapy 2-3 times per week. His therapist and I worked together to assist him with floating, stretching, range of motion, and more. The water made the exercise easier to perform and this was very beneficial in easing Ty’s pain and allowing his muscles to relax. Ty loved pool therapy so much that he would often fall asleep during his session from being so relaxed.
Unfortunately, there was one huge downside to therapy. It was extremely difficult to get Ty changed out of his wet clothing, dried, and into new clothing without having an appropriate place to change him in private. The restroom was not accommodating, having only a baby changing station as an option. Ty exceeded the height & weight requirements of the table. My mother and I struggled with changing him on the restroom floor as well.
Sometimes I would change him on my lap while I sat on the toilet. This was difficult and unsafe because of how spastic Ty is. He would have involuntary movements during the change and I would have to catch him to prevent him from falling off of my lap. Sadly, it became too stressful and dangerous to get him changed. Therefore, he was only able to participate for one summer. My heart was broken because we had to stop a therapy that was helping to improve his quality of life. This was solely due to the lack of restroom support for those who require an alternative to the toilet, needing to lie down to change briefs, clothing, etc.
Some of the benefits of water therapy include the following:
Increase in joint flexibility
Increase in muscle strength
Decrease in pain
Decrease in abnormal tone, spasticity, and rigidity
(Helen Hayes Hospital, 2013)
These are benefits that I do not want any other person or family to miss out on due to the lack of having a height adjustable adult-sized changing table in place. Although our experience was over ten years ago, I often wonder what life would be like for Ty if we had been able to continue with pool therapy. Individuals with disabilities, the elderly, and those with chronic health conditions deserve a restroom that supports their unique needs in order to function in society. For this reason, I vow to keep taking action and working with the Changing Spaces Campaign to influence change across the United States and beyond.
Thank you to all of you who support our efforts. You’ve become family to us and we appreciate you.
Forever an advocate,
Kisha Smith, National Organizer and Georgia Chapter Co-chair
The Changing Spaces Campaign
Learn more about the Changing Spaces Campaign