Sherry talks about deceiving Charley.
There are truths. The first truth is that when dealing with a child like Charley, there’s going to be some lying going on. With his inhibited ability to reason, there’s only so much you can expect him to understand, even at twenty-one years of age. So should we lie to him? I say yes. His comfort is more important than truth. But then, I know I’ll pay for it later. I’m weak that way, and so is Brad…
The second truth is that Charley understands much more than you think he does…
Sugarcoating the truth to spare him the agony may provide a temporary Band-Aid, but when the truth comes calling we have only ourselves to blame for underestimating him. P. 443-444
How do you feel about lying to someone who has Down syndrome?
When people leave the lives of someone who has Down syndrome, it can be difficult for parents to explain, and for our children to understand. The death of someone important to them is hard enough to fathom, but loss someone who is paid to be their “friend” is often harder.
Meanwhile, there’s a young man back at the Palmer house who’s never been told that Rob was paid to be his friend. He has no clue that when the money stopped, so did his afternoons with Rob. P. 459
The lack of services is another issue.
Many families qualify for assistance, and the respite workers are paid for by the state. Others, like our family, for whatever reason, arrived in Tennessee only to be put on a 5,000-plus waiting list because there’s a funding freeze. Because of the freeze, we receive letters stating that Charley continues to be on the “urgent” list of individuals needing services. Urgent. So urgent, that six years later he’s still on that urgent list.
Meanwhile, in over our heads and drowning in debt, we could no longer afford to pay for respite care so Rob could drive across town and take him to Kentucky Fried Chicken where they would eat “kicken bones,” and do guy things, such as “cruise for chicks.” Things moms can’t do. Things moms can’t be. And just like that? Rob became his unavailable friend. P. 460
Does your child have people who are paid to be his/her friends? How do you explain these people? Have you struggled with waiting lists for services?
Sometimes, we have no way of knowing how our children (that we think we know inside and out) will interpret a situation.
We underestimate who he is. We look at his face, with his crescent mooneyes, and we listen to his broken English or, as it’s called in our house, Charley-as-a-second-language, and we assume he’s unable to figure it out, when news flash, what’s there to figure out? In his view, bringing home a baby cat without the mother is like holding Willy hostage in the aquarium. That kind of thinking requires reasoning and depth, not Down syndrome. Or does it? Perhaps we could all stand to learn a thing or two from that extra chromosome. P. 464
Sherry is forced to think about how Charley would react to learning about his adoption. Have you ever kept something from your son/daughter because you thought they couldn’t handle it? Did they figure it out? How do you decide what to share, and what not to share?