Tip of the Week: Difficult decisions: considering a residential placement

For parents of a child with Prader-Willi syndrome and other diagnoses, the decision to place the child in a residential setting can be a heart wrenching and confusing process. No one wants to have to make the decision, but when your child is struggling at home or at school to the point where their quality of life and yours is suffering, it may be time to look at this option.

No one knows or loves your child as much as you, do but there are places that can nurture, teach and support your child to live to their full potential. A few important things to consider when looking at a residential placement:

How experienced are they working with PWS?

Does the staff receive training to meet the needs of the students?

Are they active with PWSAUSA?

Talking to parents who already have children there can be helpful: Are they happy? Have their children made progress? Will your child have a peer group? Because children with PWS have such unique needs, they are often singled out in school and made to feel different. We see children who were the outcasts in their previous school who are suddenly popular and sought out for friendship after moving in.

Here are some quotes from parents of children at Latham: “(My son) has friends, lots of friends. In my wildest dreams, I never thought he would even have one friend. I was just happy when kids didn’t pick on him. Now he has kids that want to be with him, really like him for him. Not because their mothers told them to be nice or to tolerate him”.

“(My daughter) had taken our family hostage. My other kids were suffering, we walked on egg shells trying not to upset her. Making the decision to place her at Latham was still so hard but now she visits and we’re more relaxed because she is. She calls and she sounds happy. She’s working on skills to help her relax and it seems to be working because now when she visits my other kids want to spend time with her.”

“The first night (my son) was at Latham, I slept. I mean really slept, like the whole night! Then I realized that I think it was the first time I’d slept in 16 years.”

We know that the decision of residential placement is a difficult one, but sometimes it is necessary for the quality of life of you and your family. We are here if you want to discuss options. We understand that your child is unique and also understand the unique needs of PWS. Don’t hesitate to give us a call, we are here for you.

 

Patrice Carroll is Latham Centers’ world-renowned Prader-Willi Syndrome specialist. She works with Latham Centers’ residents with PWS, their families, and consultants, continuously learning and teaching about PWS best practices.

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