What's Your "Secret Sauce" for Special Needs?
How to make sure others will know what to do for your child when you can't be there
Illustration Credit: Philip Tseng
Remember, oh so long ago, before the coronavirus lockdown, when you could enjoy a basket of chips in a restaurant or at your favorite sporting event? And remember how the kick of salsa would make those chips zing? Well, if you're trying to reproduce that chips 'n salsa experience at home, you know that you're going to need a great salsa recipe.
Of course, the best salsas out there are homemade from recipes handed down or shared with friends. Here's the story of how a very popular salsa recipe was nearly lost for all time.
In Windham, Maine, a special needs parent named Stephanie Lay “accidentally” started a salsa company in 2014: Maine-Tex Grilled Salsa. She and her son with autism began making salsa for friends, and before they knew it, they were filling orders for local grocery stores in Maine and New Hampshire.
Stephanie’s mission was to provide meaningful work for her son Bryce and others like him. She wanted her son to have a job despite his challenges. What special needs parent doesn’t feel the same way? Family and friends were not only supportive of this mom’s endeavor; they saw her as a warrior mother and local hero. This only enhanced the tragedy when Stephanie passed away in her Windham home earlier this year. Her sudden death was a shock.
It's not only about you - it's about what happens after you
Stephanie's friends and family reeled from the news, and the community mourned. But as friends and family celebrated the life of this courageous Special Needs Mom, there was also probably deep concern for the salsa business and whether it would continue without Stephanie there to run things.
Bryce would not be able to manage the business by himself. Local news stories reported how stressful it was for Stephanie's friends when they were searching for that magical salsa recipe after her sudden passing. The good news is that the salsa recipes were eventually located, and Stephanie's friends were able to step in to learn how to keep the business going. Most importantly, Bryce will be able to continue making the salsas he and his mom created.
This story speaks to one of the most common and most pressing fears that special needs parents have: when we are gone, who will care for our child? How will others know what to do?
The answer to such a critical question is not simple. There are many aspects to caring for a person with special needs. So much a guardian or a conservator needs to know and implement. There’s medication schedules and pharmacy information. There’s dietary concerns and meal preferences. Everything from general knowledge (what’s his favorite movie?) to specific tidbits (he likes his bed made with the sheets upside down). There is a mountain of information to transmit to whomever is going to take over care.
And like the lost (and eventually found) salsa recipes for Maine-Tex, only special needs parents know all the details. They may have notes in file cabinets or desk drawers. Maybe documents are stashed in binders or folded into the pages of books. Perhaps a password-protected computer houses the essential information about daily living. In a tragic situation, when a special needs parent is there one day, but not the next, how will anyone know what to do or where to look for information? How will the child or teen or young adult get by?
It’s wonderful that dedicated friends were able to locate the recipes that are the lifeblood of Bryce’s salsa business. What would happen to your child’s livelihood if something tragic befell you? Special needs parents can’t afford to just think about that “later.” Worrying about what to do now will not provide an answer. Obtaining peace of mind in light of uncertainty is so valuable! We all think we have endless time, but the reality is, we don't. What is your "secret sauce" and where is it housed so that others can find it?
In my job as Customer Success Manager for Vest, I'm excited to help parents of special needs individuals with real and lasting solutions to make sure the meaningful things in their child's life will continue on, long after the parents are gone. As a mother to a son with special needs, I can truly say "I get it." Let's work on solutions together.
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