Q9: Life With Charley – So Much for Respite

“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?

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2 comments on “Q9: Life With Charley – So Much for Respite
  1. Celeste Hart says:

    For a year now, Dude’s been getting respite services and at first it was difficult understanding the process. The company sent a pregnant woman who had five children. The first visits were simple, they went to the store and the park. When she took him to the doctor, the nurse called me to complain about this worker. Mind you, the nurse and I are not friends. She said “that lady wasn’t interacting with Dude. I got a bad vibe. She wasn’t interested in what was going on. I just thought you should know.”
    I was so relieved I didn’t have to take Dude, she gave me his paper work, told me what the doctor said and I guess we both felt she did what she was paid to do, no more no less. I don’t even know what they get paid but was too happy about getting ANY services,finally.

    That lady also wouldn’t show up on time and sometimes not at all. Dude stopped looking out the window.I didn’t report her because, I also have five children and know the struggle and she needed the money. Well, she was reporting actions and days on time sheets, that never occurred. She received others’ complaints and was fired. I felt so bad and annoyed when management got on me for not reporting her. “You have to look out for your son”. Of course, I felt like they were degrading me. But later I realized, I became ‘friends’ with this girl, Dude didn’t. Management was right, I didn’t look out for my son.

    I hunted down my son’s former high school teacher, I learned he could respite for Dude . I also knew he needed extra money in the summers and Dude loved this man. As a single mother, I wanted a man-friend in Dude’s life, to do manly things. Management hired Mr. Vernon, who is also a track and basketball coach. Dude and I are friends with Mr. Vernon, they go to the gym, the mall, restaurants and as Vernon says, ‘just kickin it’.

    Thank you, InReach management. I AM looking out for my son. LOL

  2. Nova Hewitt says:

    I can’t wait to read your book. The more of these stories I read I know I’m going to feel like it’s a warm blanket.
    Paid companions. They come and go. I’m sure it’s depressing to Kate but she’s a loner as well. If I’m not watchful she would spend her life in her bedroom organizing books and coloring while talking to her mean fantasy friend Toy.
    I take up the slack and love it. I get her out every day for at least 3 hours.
    If I ask for suggestions on making Kates life happier I’m delighted to hear ideas from a caregiver. If someone suggested “strict” compliance to any thing id laugh my head off and find someone else with a very relaxed disposition. If you came off demanding to Kate, she would sit down and never move. The more energy you invest in powermongering the more difiant she becomes. They follow Kates lead or I can’t trust them with her. She would push some people to abuse in order to win her war.
    Breaks my heart that Kate is alone. Her brother is her love. Her sister is far away and it’s hard for her to understand Kate. Kate loves visiting her. I think dealing with her as a child she got burned out. She was quite a piece of work then! A runner and melt down expert.
    She has a young woman who knows her understands her and loves her but has little time. I’m especially thankful for her.
    Friendships. Difficult enough For the typical.
    This made me feel like I have allies. People just don’t get it. It’s a heartbreaker. Not Kates. Mine.

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