I had just attended school earlier in the week, for parent open house. When I got there, Dear Son was sitting in the wheelchair getting his lunch via the feeding tube. As I leaned over to kiss his head, I noticed his shorts were wet, which meant he needed to be changed. I told the aide, whom I had never met, that he was wet and needed to be changed. He acted like it wasn’t a big deal and said he’d change him after his lunch. The only problem with that, was that his lunch wasn’t over for another hour and a half. At home, I don’t do that. I never let him sit in his urine. His Dad is the same way. We change him as soon as possible. I talked to the aide a little more but I just wasn’t feeling too great about the whole changing thing.
This morning, as I was getting Dear Son ready for school, I talked to him about swimming. Wednesday’s and Friday’s were swim days at the pool. I had missed Parents Day at the swimming pool a few weeks back, because I was working, so I opted to come today. I was so excited. I love coming to see Dear Son swim, because he loves it so much. Even people who have never worked with Dear Son directly at school, know he loves the pool. He’s one of the first ones in and the last one out. I'd bring my camera and take pictures of his smiling face. I figured I’d take the pictures, then go home and compare them to last years pictures, to see how much he’s grown. I can’t tell you how excited I was to go today.
I mentioned this to Dear Son, that I’d see him at the swimming pool, as I was getting him dressed. He made a sad face, which was really odd. He loves it when I come to school to see him. I couldn’t quite figure it out. I thought something might be wrong but I had no reason to think otherwise. As I got him in the wheelchair for school, he had a small seizure. I was able to stop it with the magnet by holding it over his vagus nerve stimulator. Dear Son has been having seizures off and on for a few weeks now and recently we made some medicine changes which had been helping.
I arrived at the pool to see them taking Dear Son into the water. They have a zero grade pool, I think that’s what it’s called, where the pool depth starts at around an inch, then gradually gets deeper. They used the hoyer lift to lift him into the pool wheelchair, then rolled the wheelchair into the water. The aide soon brought Dear Son over to “his spot” at the pool. His spot was in the three foot section of water.
This is a photo of Dear Son today, right before his seizure. Notice that the life vest has already started going up on his head. While it looks somewhat secure in this photo, the straps were so loose that they floated up on the side of Dear Son. You can see Dear Son is very tense and the aide does not have a grip on him nor is he holding him securely.
I was quite alarmed when I saw Dear Son. The aide, was hardly holding him at all and his life vest wasn’t secure. I took a picture and then things headed south pretty quickly. Dear Son began having a seizure. His hands started shaking and his eyes started squinting, almost like a frown. Soon his mouth was foaming and he was having trouble swallowing and breathing. I told the aide he was having a seizure and he needed to get a better grip on him. He didn’t listen. I told him again that he needed to hold him better. With that, the life vest began to float off around Dear Son’s head and he began sinking in the pool. I began yelling at him to grab him since I thought he was going to drown. I panicked and looked around and there weren’t any other men around to help. Dear Son is a big guy and it’s pretty easy to lose control of him, no matter how much you don’t want to. And in the water, well, he’s slippery. His seizure started getting worse and his mouth was foaming even more. He was sinking in the water and the life vest was falling off. I told the aide that he had to grab him and get him out of the water. Finally, someone helped get him up to the side of the pool. I told them that I wanted him out the water right away. Finally, I was able to get someone to get his teacher, who was far across the pool, and they got the pool wheelchair and attempted to get him in there. It took two men and when that failed, they had to call in someone else to help get him in the wheelchair.
If that weren’t enough, having him almost drown, the Summer School Coordinator, didn’t see a problem. He felt that Dear Son was safe. When I explained that it wasn’t safe to have him in the pool with a life vest that hadn’t been secured, he said that he was there every day and he thought things were o.k. I explained that the aide didn’t secure the life vest appropriately, missed the fact that Dear Son had a seizure, didn’t have another aide close by as a back up, and couldn’t hold Dear Son on his own. That is not safe. I told him no more swimming for Dear Son. He tried to reason with me explaining that there were only two more swimming days left and that I should let him swim. I told him that if he wasn’t safe, that was two more opportunities for him to drown and that I wasn’t willing to take that chance. I told him I didn’t want to be planning a funeral. I mean, Dear Son can’t stand, can’t swim, can’t walk, can’t talk and has seizures. He has limited use of his hands/arms. If he gets into trouble, he can’t help himself in any way. It’s not like I am being overprotective for a normal child. Dear Son has some significant disabilities and significant issues that present a real safety issue in the pool.
This is the picture from last year in the pool. Notice the life vest is secure and the aide is holding Dear Son securely. You can see both of his hands supporting Dear Son. Note how relaxed Dear Son is in the pool; I called this, "Zen Swimming".
As I was leaving the pool, his teacher came up and wanted to talk. I explained the situation and he kept saying that he thought he was safe. I told him that the vest wasn’t secure and that the aide didn’t have a grip on him and that there weren’t any other aides around. He said that it’s normal for the one aide to take care of Dear Son and so far things were fine. I told him I didn’t want him swimming anymore. He wanted to know what he could do so that Dear Son could still swim on swim days. He stated that he loved the pool so much that he wanted him to swim. He asked if I would agree to let him swim if they secured the vest and had two people with him and explained that there were only two swimming days left.
This is a picture from last year. Notice how the aide was holding him and how Dear Son was secure. Also notice that there are three other men in the photo that could help if he got in trouble.
As I left the pool, I was crying. This was supposed to be a fun day, seeing him happy at the pool. Instead, I almost saw him drown. And worse, they didn’t have an issue with that. It just goes to show you that you have to be involved. I try to trust people with Dear Son but honestly, when this stuff happens, I can’t feel good about that. What if I wasn’t there? What if he drowned?
I went home and called the pediatric neurologist. While waiting for him to call back, I checked out the summer school forms I signed a few weeks back. Normally, the doc writes on the form that in order to swim there must be two aides there. When I looked at the form, the form was a release form, releasing them from any liability in case of an accident. No wonder, it was o.k. They knew they wouldn’t be liable. I had forgotten that I had signed that but on the flip side, he can’t attend summer school without it, so what is a parent to do?
After speaking with his neurologist, he stated that it wasn’t safe for Dear Son to swim. I am feeling really bad right now. It’s so hard sometimes, now that Dear Son is so fragile. I worry all the time that I’ll miss something and he’ll die or he’ll die in his sleep from a seizure. I lay awake some nights counting his breaths or making sure that he is breathing o.k. before I allow myself to fall asleep. If he sleeps too long, I worry he died. I try to check on him regularly to make sure things are o.k. I try to get up every two hours or so, to turn him over at night, since he can’t roll over on his own, so he doesn’t get any bedsores. I know it’s getting near the end for him and I am not willing to let him go. I just wanted to do what every other Mom does; I just wanted to see him smile today. Instead, he almost drowned.
Note: Dear Son suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation.