Moments to Mainstreet

Next week the first residence of Main Street, a new affordable and inclusive apartment building and member-based community center, will begin moving into the building. My husband, Scott and I founded Main Street in 2017 for our son, Nicol, and other adults with developmental challenges seeking a place to live – to learn – and most importantly – to belong.

The road to Main Street is full of ‘moments’ – moments laced with fears, challenges, anxiety, joy, and love. The moments are felt with extreme highs and soul-searching lows.

On January 17, 2000, Scott, and I went to the movie ‘The Hurricane’, the story of how one moment can change and define a person’s life forever. Ironically, that evening would change our lives forever.

As we were leaving the theater, we received a frantic call from our babysitter that something was very wrong with our baby.  He was just 8 months old. (His brothers were 5 and 3 at the time and another would follow 2 years later.) When we got home, we found Nicol in the arms of a neighbor. He was stiff and staring. The paramedics arrived and we were rushed to the hospital.

Nicol was having a seizure – his first of many – and it lasted for over 2 hours – the longest 2 hours of my life.  That moment changed our lives forever.  And it was the first of many.

Nicol’s diagnosis. Professionals telling us to “buckle down.” Preschool director raising “flags across the board.” Programs not accepting him because he was “too medical” or “too behavioral.”

But as low as the lows – the highs are like nothing you have ever felt.   Unexpected triumphs are indescribable.

Moments like the first time Nicol told me he loved me. Or the love I see when my other sons, family members and friends look at Nicol with pride.  Or when Nicol got his license – a huge milestone!  Or watching him walk across the stage at his high school graduation.

At 7 years old, Nicol was enrolled at a school for kids with learning challenges. We knew rather quickly this school wasn’t meeting his needs. We would have to find another program. I began to panic. Where would he go? What school would focus not only on academics, but also on social skills, emotional regulation, creativity? That was what he needed.

That was a significant moment.  I raced home and researched programs schools and I found nothing.  So, I sat my patient and supportive husband down and said, “Honey, we are starting a school!”

And we did. The Diener School was founded in 2007. A momentous and proud moment!

As Nicol transitioned to other programs after Diener – there were more highs and lows.  But another moment occurred that would ultimately lead to Main Street.

During a beach vacation, Nicol reconnected with some neurotypical preschool friends (he made the friendships before the “red flags” were raised). These new friends showed up one evening to invite him to join in a beach tradition that any 13-year-old would enjoy – go hangout on the boardwalk without your parents.  Nicol lit up!

Scott and I watched as Nicol and his three friends headed out for the night.  We were reduced to tears and still are when we think of this incredible moment. He was like every other 13-year-old – even if for just that night.

This incredibly happy moment taught me how critical it is for everyone to ‘belong’.

As Nicol was getting older, I wanted to get a glimpse of what his future may look like, so I began meeting with families living with their adult disabled children.  I listened to their stories and felt a familiar churning in my gut.  An “oh shit! – not this feeling again” feeling!  But there it was.

I began researching and found their stories to be like countless others. Could it really be that once someone reaches the age of 21, they lose their entitlements?  And that this period in their lives is so devastating for families that they call it “The Cliff”?  Is it true that most adults with disabilities live at home with their aging caregivers? Seriously?  As if us caregivers aren’t already exhausted?   And is it true that many special needs individuals are lonely, disconnected and isolated from community?

But that was exactly what I found. All of it was true.  The data matched the stories.  The pain in my gut became sharper and more familiar. So, there isn’t anything out there that solves these problems – yet. But there will be!

Time to chat with the hubby again, this time about Main Street.

Join us for our Main Street Virtual Ribbon Cutting, July 30, 5-6pm. Join us to celebrate: www.mainstreetconnect.org