My friend Sue asked me asked me a few months ago if Aidan could use the one very small bathroom in our house. I replied, “Of course he can.” Turns out, she was asking the wrong question.
Although I’ve actually appreciated blog posts about toileting issues for kids with disabilities, I’ve made a decision not to write about them. I will, however, attempt to give you some basic information and you’ll have to fill in some blanks.
Aidan wears diapers for a lot of reasons. He cognitively understands what the bathroom is for and sometimes uses it. This shows great potential for him to meet this basic need with some assistance. However, because of his motor planning challenges, he cannot communicate that he needs to use the bathroom. We either guess or just take him.
For Aidan to use the bathroom, I sit on a stool directly in front of him and hold his hips or legs. He really needs a roll over commode with a seatbelt, but there is no room to roll it over our toilet and no place to store it. I also have my hands on his body because he has 3-5 seizures when he uses the bathroom in the morning. Aidan’s seizures consist of him throwing his upper body to the side or forward. This puts him at risk of hitting his head on the sink or falling off the toilet. Because he’s not a little pumpkin anymore, he also risks knocking me over, at which point we both get hurt.
Aidan has a bath chair that lowers into the tub. We hold him tightly as it moves because sitting on a wet, unstable surface with his motor control issues poses a risk. Because Aidan’s wheelchair cannot fit through the door, my husband usually carries all 50+ long, slippery pounds of him out of the bathroom after a bath to dry him off in his room. (Aidan’s PT is having a heart attack reading this because Aidan is really not of lifting weight anymore). My husband and I have spoken about bathroom renovations at length and have checked out loads of companies who could help us to make our bathroom more accessible for Aidan. It’s something that we are definitely looking to do, but unfortunately money doesn’t permit it right now.
I have choices to make, and like many choices regarding Aidan, they’re hard. I could NOT put Aidan on the toilet and completely disregard this most basic task. Can you take a moment to ponder knowing you need to use the bathroom and being at the mercy of someone who loves you but doesn’t help you?
Exactly. So I take him, and take some risks as well.
This sounds so much like complaining, which is not my intention. What I really want you to hear is this – Aidan is smart! He’s also worked very hard to get strong! With assistance, Aidan can accomplish both big things (like driving a power chair) and basic things (like using the bathroom). Because I’ve shared so much of the hard stuff, I’ll tell you this as well, though I’m hesitant because it’s my special private moment with Aidan – when I hold Aidan on the toilet, he leans forward to give me a cheek to cheek kiss, always both sides. It’s very European of him. “La bise, la bise, kiss, kiss ” I whisper. Sometimes when he’s holding me close like that I also get butterfly kisses. As much as my heart is gripped with fear when he uses the bathroom, there is still room for this precious joy.
If Sue had asked, “Can Aidan use the bathroom without risk of head injury to himself or other injuries to you?” I would have replied, “Um… no.” We did have this conversation and I said something dismissive such as, “We do what we have to do; rise to the occasion; do our best.” It’s the truth and it’s what each of you has done in difficult circumstances.
While neither Sue nor I were really comfortable with that answer, Sue saw a solution…
to be continued…..