These kids had profound autism, very involved physical disabilities, and high levels of developmental disabilities. They ranged in age from three year olds to young adults, and each child had a caregiver working directly with them.
Many of these kids were in wheelchairs, and needed extensive care to get them out of their chairs and into the pool, with many hands on deck to help. Others jumped in and out without seeming to notice the radio blaring, the multitude of other kids in the pool, and the general mayhem that goes with public pools in the summer. I was amazed, because the amount of stimulation was giving me a headache, I couldn’t imagine what these kids were feeling.
I was in awe at the sheer love of their aides and how much fun these kids had in the water. Lots of happy screams and squeals and running around, showed just how joyful they were.
I was thinking about how lovely it is for their parents to have this break, and to know how well cared for their children were, and was thinking how much of a break those hours were in their lives. But then I thought, “well, I get it. I understand what they are feeling.” Smug little me. ”I am in the club, and I have a daughter with a disability.” But I don’t get it. I don’t understand. My daughter talks to me (non-stop), she can read and socialize and make friends she can get around with a walker, she can be independent to some degree.
I was reading an article the other day about what to say and what not to say to someone who has lost a loved one, and one of those things that struck me was to never say “I know what you are going through.” It is offensive to people and you don’t know what they are going through. Their experience is not yours, their feelings do not mirror your feelings. Their relationship with their husband or mother, or friend is not the exact same relationship you had with yours.
Just like my experience with my child and her disability is not the same as these parents. I am in awe of them, and how they manage to get through a day. I would love to hear their stories and learn from them how they manage with kids who have very profound disabilities. The sheer energy it must take to keep up with these kids 24 hours a day baffles me. Where to they find the strength, and the faith that this will work out in the end.
My hat is off to you parents and my heart goes out to you. I don’t know how you feel. I cannot even guess. And I am embarrassed for my moments when I feel like my own situation is so very hard. It isn’t. You are true heroes and your children are lucky to have found you.