Amanda was donning her riding pants and fancy boots this Saturday morning as she was getting ready for her early AM therapeutic horseback riding class at a nearby farm. The Disney Channel was humming in the background, as Amanda doesn’t like being in a room that’s “too quiet.” She likes the company of quiet noise, something that has comforted her since she was five years-old. After I saw her room go from light to dark, my 4’10 curly-haired equestrian emerged into the living room with a big Kool-aid smile, indicating that today would be a good day.
Not every day starts off like this, as any parent of a special need child or adult child will tell you. Amanda likes to wake up knowing that there is a schedule in place. She likes to know what she will be doing throughout the day, down to the hour and the minute. Routine is comforting for Amanda, giving her a sense of what to expect as morning turns to afternoon, and afternoon turns to night. I liken this routine to Linus’s blanket in the Peanuts cartoon, serving as a “lovey” or “security blanket” that calms fears and ameliorates anxieties. Even at 31 years old, Amanda needs this “security blanket,” and makes a huge difference in how she greets the day ahead of her. Knowing that today is riding day, where she not only sits tall in the saddle and “walks on” atop Shy, the Egyptian Arabian gentle giant with the patience of a saint—but she also has a “schedule” of what she will be doing when she gets home, something that is hugely comforting for this anxiety-prone young woman.
In that schedule was a few minutes chatting with me about why she likes The Extended Family, its Dream in Every Bean micro-business, and the individuals she has hung out with during that hour at The Freight House restaurant in Mahopac, NY every Monday afternoon.
Q. What did you think about being a part of The Extended Family micro-business, A Dream in Every Bean, the first time you participated in the class at The Freight House?
A. I didn’t know what to expect. And I wasn’t sure I would like it. But I love seeing Laurie, and I love seeing Luke, so I kinda knew that it would be okay. I wasn’t so sure about how I’d like putting the coffee beans in a bag and weighing it. It was confusing in the beginning. But once Laurie made up a song and you started dancing, I didn’t feel so confused.
Q. How has it been meeting new people through The Extended Family?
A. It’s been good. I knew Luke and I knew Rachel but I didn’t know Erica and Joey. I like that there’s new people there because most of the time I don’t get to meet new friends. It’s hard if you don’t go to a program or job to meet new people. I had so many friends at school. But I don’t see those friends anymore. I would try to see those friends but they were too busy. That made me feel lonely. And hurt my feelings.
Q. What’s your favorite part of being at The Freight House?
A. Seeing everyone. That makes me happy. Now we’re wearing aprons and bagging jelly beans which is a lot of fun. I don’t really eat jelly beans but I like the colors.
Q. If you could come up with another micro business with TEF, what would you like to do?
A. Something with singing and dancing. And maybe acting. I like doing plays and performing in front of people. I haven’t been able to find classes like this ever since I left WEC (Westchester Exceptional Children’s School). Maybe we can find someone who will do that with us. And I can help write the plays.
Q. So for the most part, TEF has been a nice experience for you?
A. Definitely. It’s fun. We laugh a lot. I like that.
~~~Hilary Schwartz Wolfson~~~
Hilary Schwartz Wolfson is Amanda’s mom & COA (Chief Operating Advocate), TEF Social Media Manager, Cheerful Blogger and more often than not, CPSPM (Cranky Past Seven PM)
In this journey obstacles are ever present. While our sons are comfortably settled in their own home what weighs heavily can no longer be ignored.
Bleak statistics hit us like a tsunami: 85% of Adults with Developmental Disabilities are unemployed. Those who are fortunate to be working often find themselves relegated to menial or uninspiring tasks.
For many—like Sean and Luke—traditional jobs are not viable. The options are limited: remain isolated at home or join an agency program hindered by state regulations.
Our sons want what we all do: a job with purpose and meaning, a social life and a home. Whenever our knees buckled from the weight of finding our own way, Sean and Luke propelled us forward. So too would be the case on the job front.
Our full focus is to create Meaningful Engagement in a supportive environment that centers around skill training for individual micro-businesses. Once the interns acquire necessary skills, they choose their desired task and business of their desire, developing a keen sense of ownership.
Above all, Meaningful Engagement is one part matching interests with tasks, two parts skill-training and problem solving, and three parts fun. To our delight the interns are more than rising to the occasion.
A Dream in Every Bean, our first micro-business is a coffee enterprise that purchases beans from direct trade Guatemalan Coffee Farmers. Our inspired interns designed the coffee labels, grind beans, weigh, package and pack bags in advance of purchase.
We still can’t see the whole staircase, but taking the first step enabled us to live the adage dreams do come true.
We invite you to visit our Meaningful Engagement Store at TheExtendedFamily.solutions.
Welcome to our Family.
The journey to fulfillment for young adults with special needs is long, winding, even endless. But it’s a little less harrowing, and the nights a little less lonely, if you’re willing to walk it with us.
‘And Reason said to her, “Silence, what do you fear? And she said, “I hear the sound of feet a thousand times…
The insistent rhythm of footsteps echoes the drumbeat that has escalated throughout the years. Sean and Luke’s search for a meaningful life reflects what we each want: a social life, a job with purpose and a home.
Anxiously seeking solutions, our sons’ footsteps reverberated in our ears as we knocked on doors and pleaded for support, one futile step after another. It was impossible to discern the trail marked by the young adults from those of their tormented parents. Until we declared enough. Enough of looking elsewhere for hope that consistently vanished in the ether of promise.
…….Ten thousands and thousands of thousands and they beat this way.’
Our sons regularly reminded us they were ready to live independent lives, the cadence of their refrain urged us to pave the way. They became our teachers who instilled the lesson we couldn’t ignore: if we didn’t do something then nothing of consequence would happen. Waiting for outside forces to intervene was a pipe-dream.
Our sons taught us solutions were within our grasp, we simply needed to reach. Riding on their shoulders we jumped without a safety net, our hearts beating with a mixture of fright and excitement. Luke and Sean’s unwavering trust catapulted us into the unknown, and we never looked back.
In spite of the excruciating amount of time it took to realize their wish, our patient sons never stopped believing in our ability to accomplish the task at hand, no matter how formidable. As always, our heroes were right. Their faith and resolute desire empowered us. Stepping in Sean and Luke’s extraordinary footprints created possibilities we could not have imagined.
…They are the feet of those that will follow you. ~ Lydia A. Prescott
Join us. Thanks to Luke and Sean we now know the way.
Any mom can tell you, we never quite surrender to deep slumber, wary of who might need us during the night. Extraordinary situations surrounding life with an exceptional child guarantees the REM sleep cycle is perpetually out of reach.
When my 25 year-old son was an infant, friends would ask if I yearned for a normal life. “Normal is highly overrated.” I’d snap back, desperately not wanting anyone to feel sorry for me. I still don’t.
I figure it out as we go, fiercely loving my son, hoping that life would not be so hard for him. In spite of the persistent challenges, setbacks and miles of torment, life with Luke is filled with joy, delicious giggles, and optimism.
My stars aligned when I met Susan, who, together with her son Sean, were living a parallel life. Terrified by the lack of options available to young adults for meaningful engagement, a social life and a home of their own, we set out to create the impossible: helping our sons see their dreams come true. That’s why we created The Extended Family, an enterprise that helps exceptional adults realize their dream of meaningful engagement and living in a home of their own.
Early on Susan’s husband quipped, “The Founding Fathers were responsible for creating America; you two are the Founding Mothers for our guys and many others.” When our knees buckle, we prop one another up with Founding Mother grit and determination to keep going, often through insurmountable odds. Today our sons are thriving in their own home and are on the verge of initiating social enterprises.
This is not solely about two sleepless moms; we like to think of ourselves as the back-up-band. The heart of this blog belongs to Luke and Sean, two guys who saved each other and in the process, are making the world a better place.
Laurie and Susan
Meet our new Social Media Manager, Hilary Schwartz Wolfson:
Writing Life. Happy Life. I am now the official Social Media Manager for The Extended Family (along with being on the Advisory Board) and am discovering that my talents, going all the way back to my days as a freelancer for The NY Times 15 plus years ago, are surprisingly (and happily) being appreciated by folks today. I cannot deny that I am at my happiest when I am writing, particularly about issues that are important to me, so stay tuned Extended Family supporters for some lively interviews from our participants and intermittent Q & A's about our tribe and the three women (Laurie, Susan & Lisa) who made this all a reality!!
When Hilary isn’t blogging and acting as social media advisor for TEF you can find her playing with Frankie and Johnny, her two favorite goat buddies.🐐🐐