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Replacing Fear with Purpose in the New Year

Ben Borré shows off his Shreds (c) Firestarters at Good Cause Gifts in West Hartford, CT

Most families I know that have a child with a disability are driven by the same question.

What will happen to my (adult) child when I'm gone?

As a parent of both a 21 year old with nonverbal severe autism and a neurotypical 15 year old, I also recognize that worry will exist with all children. But there is a special type of dread reserved for those who are most vulnerable. For those people who cannot take care of themselves without lifelong assistance.

June 14, 2023 has been looming large in our family for years and years. It is the day my son leaves the SCHOOL world of services and enters the ADULT world of services.

SCHOOL: We worked with the school to get the best program in place to teach Ben skills to be more independent and communicate his needs. By law he is entitled to a Fair and Appropriate Education in the Least Restrictive Environment. For the most part, the school was creative and open to ideas. It was a give and take that, while frustrating at times, worked for Ben over the years.

ADULT: In the world of adult care, those services are not MANDATED. Meaning... it is ok to say "he is not a good fit for our program" or a day in the community means walking around the mall with no money, no purpose and wonder why he has behaviors. "What are we going to do with him all day?"

I am really tired of talking about the services "cliff" without talking about solutions and ideas.

Today I breathe a little easier and have a reserve of hope for the future after concluding a year long experiment with Futures Inc. to create a better future for adults with intellectual disabilities.

THE EXPERIMENT: (1) Get to know roughly a dozen adults with developmental and intellectual disabilities and create tiny business based solely on the passions and interests of each individual, regardless of level of need. (2) "Elevate" useful products and services so that the marketing and packaging matches the love and joy that is put in each one. (3) Reach out to the community to make them aware of the individuals and their tiny businesses.

Months would be spent exploring ideas (how do I support a passion for dogs? vintage cars? eating?), doing research (is this doable? How would it look?) and overcoming obstacles (How can I incorporate original artwork into the product? Will profits impact benefits?) .

We had a community ribbon cutting for each business. There were newspaper articles, t-shirts and business cards for everyone. A real sense of purpose for each person began to emerge. People would go to bed thinking of ideas.

For those people with severe disabilities, staff became detectives- how can we positively impact this person's quality of life?

I began this journey a year ago with no idea of where we would all end up. What a difference a year makes! The products and stories vary so much from person to person.

Steven spent many years living in a place where he had little control over what he ate. He ended up creating a "secret sauce" as his product. His residential staff reports that he is so proud and happy talking about his business. At this ribbon cutting ceremony, he said "I'm proud of myself. I've wished for this day for a loooooong time. And it actually came true. If it wasn't for y'all, I wouldn't be here today. I want everybody to know that. Y'all family. That's it."

Sarah loves dogs and makes dog shaped soap. Since she is vegan, we did some research and created a vegan soap. She mixes the colors and adds a gentle scent since strong scents bother her.

Toby was frustrated that people in his town feed bread to geese. Bread is nutritionally bad for birds. We created Goose Grub- a bread alternative to feed the birds which contains meal worms and seeds.

Marilyn had a recycling business but was uncomfortable approaching new businesses.We worked together to create a flyer and magnets with original artwork by Marilyn. We created recycle bins with her business name Happy Botellas (Botellas is Spanish for bottles). The flyer contains all the information so Marilyn can communicate on her own terms. At her ribbon cutting ceremony she said "I'm crying because I'm so happy and proud".

Jill enjoyed Mac n cheese in the community while working on buttons, cards and stickers featuring artistic renditions of her beloved Mac n cheese. A "Good Morning Diet Coke" coffee mug was developed to highlight her love of the drink. Since Jill was severely impacted, this helped increase her qualify of life while introducing her to her community.

STORIES- There are so many other products and stories. Stories. I've learned that everyone has a story and when it's shared, the community rises up and connects. When you have a disability, sharing your vulnerabilities takes real bravery. So many individuals have a negative internal story on a loop. Much time was spent working with each individual to find their magic and share it with their community.

My fear has been that my son would be known to the community only as "that man that lives in that group home we didn't want in our neighborhood". By sharing our stories and providing useful products and services, each community gets a better understanding and perhaps even a connection with each individual. Our motto: the purpose of life is to live a life of purpose.

When I worked with Bruce to create a flyer to distribute to boat owners at the pier in his town, Bruce shared that his struggles with anger impacted prior jobs. We talked about how he learned to cope and improve and how that information could help others. His flyers now contain a section called "Life Tips From Bruce: If you're angry, take a walk by the ocean, watch the fishing boats and take long, deep breaths." At his ribbon cutting, he said "I've always thought of having a business of my own and now I have one and it feels really good".

Our First Annual Micro-Business Holiday Party was a celebration of everything we've accomplished in the past year.

As the vans arrived from Norwich and West Hartford to Middletown, we were already 2 down. Anxiety was just too heavy for one of our group. A work routine not to be missed was another. But one by one, the other members of the Team came in out of the rain. Off came the coats, hats, gloves- so nice to stop for a moment, relax, put away to to-do lists and share a breakfast together.

The Mirco-Business Program's first annual Holiday Party!

We gathered in a crowded conference room with tables in a U shape so we could all see each other. Everyone introduced themselves and spoke about their businesses

and that's when the magic began. It was beautiful to see everyone so animated and passionate talking about THEIR OWN business. They talked about the name of the business and gave out their business cards with pride. They talked about how they made their products and mistakes that happened.

They clapped after each Certificate of Success was given out with their pictures on it.

And they listened to one another. Finally, they were able learn about each other's journeys and know they weren't alone. They were a community of small business owners.

The Micro-Business Program is all about purpose and pocket money. Individuals work on businesses that really involve their passions and interests.

How far we've come! In only a year, we have almost a dozen business with many on sale in shops around CT including Good Cause Gifts in West Hartford.

I am fortunate to work with Futures Inc. who has always been a leader in innovative programs. I am replacing fear with hope and purpose for the future. Here’s to 2023!

Darlene Borré is a Vocational Innovator for Futures Inc. in West Hartford, CT. She is an attorney and advocate for her 21 year old son, Ben, who has severe, nonverbal autism. Click here to read more about the micro-businesses she developed.


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