“Raising a special needs child is not for wimps” p. 89
“Charley has lots of people who love him but he spends most of his time by himself, which means he has a shortage of friends his own age, or in our lingo, friend deficit disorder. He can’t go down the street and play with other kids (without someone close by, making sure our unbridled quick stepper doesn’t venture into the woods or run down the road). It’s too bad, but typical kids don’t seek him out as a playmate, and that makes for a lonely boy. That’s where respite comes in; it provides someone he can consider his friend.” P. 92
Do you use personal care workers or respite care? Does your child have friends that he/she spends time with outside of school?
“But just about the time she started to become a member of the family, Margaret disappeared. One day she was there, the next day she was gone, and because Brad and I didn’t understand it ourselves, we were at a loss for words when it came to explaining it to our son. There sat Charley, looking out the window, waiting. For hours.” P. 93
I’ve often thought of how awful it would be if Charley ever knew that these workers are paid to be his friends. He knows people come and go, but never understands why. Such is the cruelty of Down syndrome—no one wants to play with you unless there’s money involved. (Again, not in every case. But since Charley has no siblings, that’s the way it’s been for us.) I’ve often thought that Charley is the lucky one, not knowing the truth about his “friends.” Although, if he did know, he would probably look at us and say, “pay the man already,” and then out the door he would go, to the nearest playground to shoot some hoops, not giving it a second thought. He has this uncanny ability to rise above the truth.” P. 102
So many of the people in our children’s lives are paid workers or volunteer staff. Has your child ever gotten attached to someone who was “temporary” in their lives? How do you explain when the relationship comes to an end?
“As he told us during his second visit to our house, “You and your wife, Reverend Palmer, have been way too lenient with this boy. I intend to be strict.”
“Good for you.”Brad glanced at me like, this-ought-to-be-good.” P. 103
Brad told Jake to bring him home. Jake protested. “No. We’ve spent twelve dollars and we’re not going to waste it.” …
Brad said, “Then you’re going to be doing it naked, because if I know my son you will not get him to put on his clothes unless he thinks you’re bringing him home.”
And to that, Jake said, “Rubbish.” Pp. 107-108
Has a respite worker or care provider ever tried to tell you how to parent? How would you have reacted to Jake?