Can you tell us a little bit about yourself, your family, and your SMS individual?

My name is Leah Baigell and along with my husband Henry, we have two boys – Max who is 33, and Zach, our 30 year old with SMS. Max married Havens and they have our 2 amazing grandaughters, Ivy (4) & Lennox 1½ ). Yes, that means Zach is an uncle. A role he alternately relishes and shuns depending on how much attention he needs on the days we have the girls. Henry is a software engineer and I work part time in the special needs field (surprise!). I am a parent mentor for the Sibling Support Program in Massachusetts. I lead parent support groups for families who have challenging children, offering information on how to best support neurotypical siblings. In addition to my job, I am passionate about supporting people in need.  I chair several large community programs through my synagogue throughout the year. In one program we prepare and deliver over 550 home cooked holiday meals to our “neighbors in need”, and in another we help clean the community, pack up school supply bags for children in shelters, provide supplies for new mothers in need, among other things. Zach enjoys and is very much a part of all this volunteer work. 

Since covid, Zach who used to live in a shared living situation and work on a farm, moved back home with us. We started 2 small “businesses” with him to keep him busy. He takes great photos and now sells notecards to a few local area stores. A second job we created is collecting and redeeming cans and bottles in our town. These small jobs give Zach, when he is willing, activity to fill the day and a little bit of pocket change for his favorite Dunkin Donuts coffee.

Zach has always been a loving child, and as you can imagine, incredibly challenging. From the start he had all the hallmarks of SMS, we just didn’t know it. Until he was diagnosed at 15 we chalked everything up to “Tourette Syndrome Plus” which allowed him to get services. He does/did in fact have TS, we added the “plus” because we didn’t have a label for all the other challenges. Once Zach was diagnosed we found PRISMS and began attending the conferences. We both enjoy being part of a team and he asked if he could present at the conference. For 3 years he was the opening speaker and did a great job. His topics were “Zach’s Story” (2014), “The Dignity of Risk” (2016), ”Honoring the Past, Treasuring the  Present, Shaping the Future Together” (2018). 

As for my involvement, together with a few other parents we created the Prisms Advocacy Workgroup. Our mission is to reflect on the needs of our community and work on a topic that best serves those needs. In 2016 we published the Residential Guidebook and also presented at the conference, in 2018 we published A Guidebook for Families Newly Diagnosed, and in the 2021 virtual conference we ran a presentation on Resilience in Caregivers. Additionally, I have done presentations on siblings, and also on psychiatric admissions. 

Henry & I are biking and swimming enthusiasts! We live near Walden Pond if we can, we swim, with wetsuits, right up through early November.  I enjoy running, reading, eating chocolate,  playing with our granddaughters, and keeping Zach busy.

How long have you been a Regional Rep for PRISMS? Since the inception of the program in 2014.

Why did you decide to become a Regional Rep? The first conference we attended was in 2009 and from the start I felt like I wanted to participate in  some way beyond attending the presentations. When the opportunity arose I jumped on it as something that was manageable and could make a difference to other families.

What is your favorite part of being a Regional Rep?  I love helping families who are newly diagnosed. I enjoy talking to families who have questions and providing them with information as best as I can. I do not have all the answers but I am happy to brainstorm and help folks in any way.

In all the years you have been a Regional Rep, how do you think you have impacted others?  I can only hope I have impacted others but I have no idea. I have talked to many families in the Northeast region and shared information that I hope they found useful. An example of how I helped a family isn’t because I am a regional rep, it’s about helping a friend who lives nearby who also has a child with SMS. My friend’s daughter is one year older than Zach and the family was experiencing some serious legal challenges regarding their daughter. The mom asked me to join her at a few meetings with lawyers and politicians, as support and corroboration on the challenges our kids present. I did and eventually things worked out. I have no connections, pulled no strings and wish I could have done more. Bottom line though is I was there to support my friend.

What does PRISMS mean to you? PRISMS is like Cheers – it’s a place where everybody knows your name . . . . and your syndrome!  Every family, albeit facing different challenges, is in the same boat and we all “get it”. There is acceptance and willingness to provide support, listen and share information, not to mention the research that is happening. That is so important as we look ahead at the kinds of supports our kids will need as they get older.

If you would like to find a Regional Representative in your area, or are interested in serving as a Regional Representative for PRISMS, please email info@prims.org.