Getting Real with Shadra Bruce
Letting Derek join the Army was hard, but nothing prepared me for the kinds of decisions we would have to make for Kyle.
Kyle was born with Down syndrome, complicated by the fact that he was also born with an almost total hearing loss. While the doctors were finally able to perform surgery when Kyle was 7 to restore his hearing, by that time, he was speech-impaired. We tried everything to improve his speech – therapy, sign language, and even a $7,000 piece of technology that let him speak in picture symbols, which he used to repeatedly ask for McDonald’s french fries all day every day.
Kyle was – and is – an extraordinary person. He has a delightful personality, a devious sense of humor, and a really fabulous growl that he uses when people piss him off. He is awesome.
We advocated for and fought for Kyle in school after school and with service after service. We made sure he received the care he needed and deserved wherever he was.
How do you know that you are doing what’s best for someone who has a limited ability to tell you how he is feeling or what he wants out of life?
Dave and I are very good at reading Kyle…but we never dreamed that we would leave him in Utah when we moved back to New York. Some people think what we did was cruel, but we know – beyond a shadow of a doubt – that it was the best thing we could do for our son.
When we were living in Utah, Kyle reached a point where Dave and I could no longer effectively care for him. Part of this is because Utah sucks at caring for the disabled – the waiting list to get services is about 10 years long. Since we couldn’t lift Kyle when he fell, couldn’t get him in and out of the shower, and had about 9 years left on the waiting list, we started looking for alternatives and found one in the form of a group home – a skilled nursing facility that provided work, activities, oversight, and caretakers and complete accessibility (Kyle reached a point where he could not even get up and down the stairs in our home; the only showers were up or down stairs).
Kyle loves his home. When we still lived in Utah, we would bring him home to visit. He would be happy to see us, but after a few hours he would ask to go “home.” Home for him was no longer with us – it was his place, with his friends, and his new family.
When we decided to return to New York (for a variety of very necessary reasons), there was simply no way we could tear Kyle away from his new life, even though it was difficult for us. He found his path. It was up to us to respect and honor – and support it. Just because he is disabled doesn’t mean he isn’t perfectly capable of letting us know his wants and needs.