To Miss Leah, Many Thanks and Best Wishes

As you have stepped forward and begun to sing your life’s song looking toward a new future so far away, I wish to share a quick note expressing my deep appreciation for your kindness to our son. Thank you for working so patiently with Tony and for cheering him on with Emily during your weekly NMT co-treats.  I know your time working with our family was brief, but I will always be grateful for your steady, gentle way of working with our son.  Your professionalism, compassion, and work ethic will be a gift that blesses and lights the lives of everyone you work with.  Best of luck in your new marriage and state…and, thank you.

To the Fabulous Sprouts Employee with the Hint of Mermaid Hair

For this moment, where you saw my son facing (lining up and pulling forward) boxes of his favorite cereal brand and told him he could have a job there, thank you.  When you emphasized the point by saying “no really, he could have a job here,” my heart nearly exploded and buried you in that aisle with valentine candy hearts captioned with phrases like “you rock,” “I love you,” and “YES!” For showing extraordinary kindness to my son and gifting me with the best public therapy moment in months, thank you.

Some Reading to Consider

Here at the Quiet Crisis Next Door, we think there is a lot of value in doing what we can to understand a wide variety of life experiences.  So, this month’s reading to consider is focused on the lives of individuals with Prader-Willi Syndrome and their families.

Two of these books share the perspectives of individual families and render compelling pictures of the overall challenges and experiences:  Dinah’s Story, by Loretta Stafford, and The Way Life Is, by Rick Johnson.  Of the two, I honestly enjoyed the candor and prose of Mr. Johnson’s writing more.  The experiences of the two families are very different: Dinah Stafford was born before Prader-Willi was described in the literature, had greater deficits, and went without diagnosis until adulthood.  The Johnson family received Sara’s diagnosis much earlier, but had more than one kiddo with specialized needs born to them and experienced heart-wrenching levels of stress as they did their best to help all of their children thrive. I think there is a definite need in our communities to understand what happens in the homes of lower functioning individuals in particular, because so many times those stories aren’t as often publicized. However, I feel like Johnson got a bit more real about some of the emotional impact these experiences can have on a family, and as I weighed these books in my mind I couldn’t find one to recommend over the other. I think if you have the time, both books are worth a read.

The third book, Prader-Willi Syndrome: Quality of Life, by Terrance James, is definitely more of an academic read, and one I recommend for habilitative therapists, special education teachers, social workers, counselors, or anyone who will work in a more extended capacity with an individual who has Prader-Willi or their family.  Dr. James presents incredibly useful information in this book from over two decades of surveys and interactions with numerous individuals, families, and caregivers, including Rick Johnson (who is quoted in Mr. James’ book), and that was actually the rabbit hole that sparked my curiosity about The Way Life Is.