Representation Matters

In December, my 23-year-old son with Profound Autism, had been home, suspended from his day program, for over a month. I want to say I’m an “everything happens for a reason” person, but truthfully, that wisdom only tends to arrive in hindsight.

As hindsight would have it, I had been spending way too much time scrolling on my phone during that time, because what else do you do when your adult child will not/cannot leave the house, won’t allow the TV or any music on, and is up and down the stairs all day looking for your attention? You kill time. I don’t know if it was a post I saw on social media, an email from a mailing list I didn’t realize I was on, or even what it was that led me to open and read said post or email, but I did. The Colin Farrell Foundation was having its first annual Winter’s Ball and was giving away tickets to caregivers of adults with Intellectual Disabilities. I have an acquaintance whose son has Angelman Syndrome, and I recalled her mentioning Colin Farrell and some event she would often attend…was this just for Angelman Syndrome? As I read further, I discovered that this was a new organization designed to raise awareness about the challenges ALL families and individuals with Intellectual Developmental Disabilities (IDD) face, and to change things like long waiting lists, inadequate housing, and poorly paid and trained support staff. Chicago in December? Absolutely. I submitted my entry for tickets.

In late October, I got word that we had won tickets! I still didn’t even know if it would be worth our while to attend, but the Board of HomeLife 21 agreed, so I made my reservations. I can tell you, that by the time December rolled around, I would have gone to a conference in Siberia on potty training if it got me out of the house for a few days. But the more I read, the more I was encouraged that this was indeed something new. Colin Farrell had done a piece for People Magazine talking about what it’s like to have a grown young adult with a significant Intellectual Disability, fully recognizing the resources he is fortunate to have, and cognizant that most families do not have such resources, and are often just barely getting by. Financially and emotionally. He talked about the “bottom falling out” when our kids turn 21, when services are scarce, opportunities for growth and dignified living scarcer, and parents and loved ones, often older themselves, are left to figure out what to do.

I got excited as I got a gown and shoes, signed up for the complimentary hair and makeup session offered, and made the arrangements to be gone for 2 nights. I had hoped to go with a fellow board member, but as often happens, she had other family obligations and I was going solo. I was seriously out of my comfort zone walking into an event where many people already knew each other, I didn’t know a single soul, and I still wasn’t even sure this event was “for me”.

We all tend to be in our silos of disability; Autism Silo, Down Syndrome Silo, Fragile X Silo, etc. It’s not that we don’t cross paths and share challenges, but constantly fighting for resources and the attention of the people and institutions that dish out education, money, and services, you tend to flock together by challenge. Would I be accepted? Would people understand Profound Autism? Would this be helpful to us at HomeLife 21 in any way?

Do you know that feeling when you’re so stressed, wound up, and overwhelmed and someone, some dear soul, demands your gaze, your attention? Perhaps they hug you or say something that tells you they see you, and you break down crying? You can finally LET GO, just for a moment, and let someone else bear witness to your existence, hold your pain, and it means EVERYTHING.

That was this event.

I believe there were 1,000 people in attendance. Many with their “Angels” as individuals with Angelman Syndrome are often called. (I wish we had a warm and fuzzy name for Profound Autism, but that topic is for another time!) Yes, many had been meeting for years at this event in Chicago and knew each other well, but this foundation that now bears the name of Academy Award Nominee Colin Farrell is new. It grew out of the love that those people (including Mr. Farrell) who gathered over the years nurtured, and it is nothing that has existed before. I met other families working to create affordable, dignified, supportive housing, parents involved in genetic research, and families with means who still struggle and were there to support the cause.

When they say “representation matters”, it doesn’t usually apply to me, a white middle-class woman; it applies to the marginalized. Adults with significant IDD and their families are indeed a marginalized group, and it was deeply profound and meaningful to have my own experience reflected back to me from that stage, from a prominent figure who will continue to speak out on our behalf. It was that moment someone hugs you and you break down because you can let someone else bear the burden for just a moment. I felt relief. Finally, maybe someone will see us, hear us, and even help us ensure our loved ones have the dignity as adults they deserve. I don’t feel so alone shouting from the rooftops into the void.

Whether HomeLife 21 can be a recipient of the grants that The Colin Farrell Foundation plans to make or assist in their awareness campaign, we are here for it. We are grateful.

Please do go check out The Colin Farrell Foundation.

Please continue to support our mission at HomeLife 21, now bolstered by a lovely actor from Ireland. Your support enables us to broaden our knowledge and network by attending these events. This, in turn, brings us one step closer to realizing our mission of a forever home for our adults with Profound Autism and IDD. Thank you.

Photos courtesy of The Colin Farrell Foundation

Road Trip!

Dear friends, family, co-workers, and other awesome supporters!

We would like to thank all of the supporters, donors, and cheerleaders who have helped us this year by sharing this story of inspiration. For those who have come out and supported us at our Stone Pony and Dublin House fundraisers; who have contributed financially or have lent us their expertise, this story is just one way your help has contributed to our endeavor. Thanks to your generosity, we learned so much that will one day benefit our boys, and hopefully many others in the future. We are so very grateful.

ROAD TRIP

This summer I had the road trip of a lifetime.

For four glorious, childless, caretaking-free days, I had the opportunity to hit the road to Whitehouse, Ohio with two of my fabulous cohorts in crime from HomeLife 21.

There were decadent tacos consumed, with the requisite margarita chaser.

My dear friends and I were able to ascertain with all due certainty that rest stops in Ohio are far superior to those in Pennsylvania.

And there were secrets shared we will all take to our graves.

There’s not enough I can say about these women, who I carefully selected years ago to accompany me on this journey to create a safe, exciting, out-of-the-box residence for our sons, in part because of their talents, but also because I knew I would continue to like them for another forty years.

I have my priorities.

As much as I enjoyed the bonding, the real star of the trip was visiting Bittersweet Farms, the first farmstead-based program for adults with autism in the United States, established in 1983. The farm impacts lives through its residential, vocational, educational, and recreational programs. It sits on eighty acres and boasts many greenhouses, a wonderful market and retail store, an art studio, a full-scale commercial kitchen, six residential homes, an outdoor pavilion and pool, and other buildings necessary to its success.

And while all those facts are accurate, the true essence, the soul of Bittersweet, is in its people.

Bittersweet is the vision of Bettye Ruth Kay, a public school teacher in Toledo, Ohio, who with the help of her students and their families brought this concept from a dream to an intentional community, an establishment dedicated to improving the lives of people with autism. They have since expanded to two other locations, but my friends and I toured the Whitehouse location specifically, Bittersweet’s origin story.

And what a tour it was.