TIP of the WEEK: The Hard Questions

“Will I get married one day?”
“Will I have my own children?”
“Can I become a firefighter/pilot/doctor or nurse?”
“Will I go to college?”
We hear these questions so often and many parents struggle with what to say. Do we take away their dreams by being honest or do we provide them with a false sense of hope?
The answer is somewhere in the middle.
Although we know that our girls will likely never give birth, that does not mean that they won’t be a strong presence and role model to a child. We know that many adults with PWS have strong romantic relationships and here at Latham we have an example of how that can be supported.
We have two adults, one with PWS who live in their own apartment but it is attached to a home with 24 hour supports. They live as a married couple but because their benefits would have been negatively affected they chose to have a civil union. I know of another couple who live with similar supports and their children are their pets whom they dote over and care for, and they are a family. So the answer to will I get married and have children? – If you want to, yes. It may not be the traditional family but how many of us can claim that we are traditional anymore? We see our kids with passions and interests that start young and seem to grow with age. 
“Will I become a college professor?”
My answer to that is “I want you to work towards that and if it doesn’t happen then I have no doubt that you will work on a college campus.”
“Will I become a pilot?”
My answer is  “Let’s research all of the jobs that have to do with planes and then we will have a backup plan.
A goal is a wonderful thing to work towards but it will be helpful down the road to have a number of smaller goals that you are working on as well. We know that the future is brighter than it has ever been for our children and the real truth is that we don’t know what the next 20 years will bring. We don’t know that our kids won’t achieve all that they set out to so let’s support them to dream while giving them concrete skills to have full lives regardless of the outcome. I admire their creativity and often unwavering belief in themselves so why take that away? We can help them work towards these goals, support them every step of the way while at the same time, teach them life skills that will provide them with options.


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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