Some of the hardest moments for me as the mother of a medically complex son, now 24, are the way decisions are made about him and his life without any input from me or him. Most recently it was announced at an annual review meeting at his group home that he was found to be at high risk for water activities because of seizures and would not be allowed to attend any water activities with the group home staff. I find this to be extremely limiting.
Nathan has about 20 seizures a month, all under 4 minutes. If he has a seizure in the water he is brought to the side of the pool or pond and laid on a towel where he can easily be attended. I find it sad that these activities which bring him much joy are limited with a passing comment in a routine meeting. I did rally myself to object and ask for a medical review. But I would like to question here, the value of growth and challenging oneself with some risk.
Nathan was born with severe physical disabilities, arthrogryposis multiplex congenita; his extremities were showing that all the bones were there, but the hands and feet were misshapen. Metabolic and genetic work-ups suggested an unidentified metabolic abnormality. More recently genetic sequencing studies have shown a de novo genetic variant that is shared by another child in Illinois. The clinical presentation is similar in that individual and my son. There is neuromuscular delay and seizures. This genetic variant also explains my son’s need for insulin.
I don’t know how the other family has chosen to care for their son. We kept Nathan with us and pursued any activities which brought him joy. He gets a lot of physical therapy, because he likes to move. He loves to swim. This began when he was about 4 months of age in an above ground pool in the back yard with his 3 older sisters. His oldest sister looked into swimming with the dolphins when he was 5 and we went with another family to Florida to do this. There is a theme here which I think is apparent. Not only is it easier to move in the water, but there are others around one swimming, laughing, shouting, having fun.
Nathan rarely has a seizure in the water, I think because he is having fun. His seizures are often startle seizures that happen as he is waking up. He will tune out when he is bored or tired. If he is engaged in an activity he enjoys he seems to have less seizures.
His elementary school engaged the services of an agency that helps people with disabilities join others their age in snow activities and water activities. He was able to use a paddle boat and swim and also to snow ski and go ice skating. Later in his elementary school life his aide took him swimming at the local “Y” once a week.
Who should have the final say in this risk? The group home staff? The agency overseeing the Group Home? The Department of Public Health? His medical providers? Nathan? Myself, his guardian and medical advocate? Nathan can express his preference with eye gaze. He does this to choose movie or music activities, or to read a book, or to take a walk, or to vote. Do we have different standards to evaluate risk in people with disabilities? Is it not age appropriate for young men to choose some risk in their activities? Is he not allowed to have some fun?
The seizures are scary to witness. They only go on for a few minutes, never over 4 minutes and generally are 1-2.5 minutes. Nathan can turn blue. He used to quickly recover. Now he can need oxygen for 15 minutes or so to regain good oxygen saturation levels. Medical providers have stated that it is OK to have oxygen saturation levels in the 70’s for 5-10 minutes before beginning the oxygen supplementation. For Nathan oxygen saturation levels from 85-95 are desired. But it is the fear factor that seems to complicate this whole discussion.
Nathan has always enjoyed swimming or riding in a canoe, or swimming with the dolphins in Florida. He always has an attendant or two with him. Are we limiting Nathan’s time in the water or on the water because it is risky for him or because the caretaker does not want to experience fear? Nathan has been swimming for 24 years without issue. This is clearly a risk that can be dealt with safely. And water activities have provided Nathan with much enjoyment over the years and even helped his strength and flexibility.
It has been suggested to me that this decision is based on liability issues. This may be true. There are no answers coming from the group home or the agency which oversees the home. I have no way of knowing how this decision was made. But I do know my son. He enjoys swimming, the risk involved can be anticipated by swimming in waist deep water for the attendant where it is easy to contain him if he has a seizure. The potential risk is worth every moment of joy in the water. How do we want children like Nathan to live? How does Nathan want to live is an even better question? I question all of us to look at how we arrive at these decisions that affect those we care for. For myself, as a parent and as a physician, I try to honor the wishes of the individual whenever possible.
Kathleen Grandison, MD, has practiced Family Medicine for over 40 years. She is now working in Urgent Care. She is the mother of 4 children, ages 24, 27, 31, and 36. The last child, Nathan, was born with severe disabilities and is now living in a group home for Medically Complex Men. Kathleen lives in Western Massachusetts.