A Place At The Table

Last week I had the honor of returning to my second home of Washington, DC, to speak my family’s truth, and that of thousands of others, on Capitol Hill.

I was a part of the New Jersey contingent of the National Council on Severe Autism on a road trip to meet with legislative aides from both parties. The event took place over two days, with our first day occurring on World Autism Acceptance Day, involving speeches and training in preparation for our participation for our second day on the Hill.

I will tell you that as I entered the Edlavitch JCC and into their auditorium, and looked up at a sea of well over a hundred faces, faces from over twenty states in our union, I knew I’d found “ my people”.

Professionals who understand that profound autism is often constant suffering.

Mothers who comprehend that profound autism is danger.

Fathers who live the truth that profound autism is often the relinquishing of the dream I believe most parents have for their children- to lead happy, safe and productive lives.

Advocates who understand that profound autism is not a gift.

I will admit, as we spent the day listening to inspiring speeches and trainings, I was in awe of the line-up the NCSA was able to provide for us that day.

Jackie Kancir, NCSA’s executive director, whose brilliance and attention to detail helped create the entire event.

Jill Escher, who brought up the stunning fact that many of the people in this room, some with adult children in their twenties and thirties, had never been away from their loved ones before.

Amy Lutz, who in speaking about the perception of profound autism, said that “in order to change the politics, we need to change the culture.”

Alison Singer, who eloquently explained the critical need for oversight to understand the causes, develop treatments, review existing treatments, and find better tools for early diagnosis.

Judith Ursitti, who presented so many salient points; however the one that stuck with me was that profound autism is almost 27% of the autism population, but receives only 6% of the research.

Women who are all trailblazers, whose articles and work I’ve read over the years, who have made such a tremendous contribution to our corner of the autism spectrum.

Women who are fierce, and fearless in their advocacy for our profoundly affected loved ones.

We ended the day, after being showered with food and swag and materials to help us make our asks, with witnessing role-playing in anticipation of questions we might receive from legislative aides and assistants on Thursday. We also reviewed our four big asks:

To ask the HHS department to declare autism a public health emergency.

To request a GAO report to investigate housing regulations.

To research priorities regarding the funding from the Autism CARES Act.

To plead for Medicaid to not be altered in any way.

When the day concluded, our NJ contingent met briefly to figure out how to divide and conquer. We were able to seamlessly orchestrate a potent way to plead our causes, with a mixture of hard core facts interspersed with stories, and pictures of our loved ones, to illustrate this truth.

That profound autism is a crisis.

And that our loved ones desperately need our senators’ and representatives’ help.

We all met up later at a mixer generously provided for us by NCSA sponsors, then went to our respective places of rest to prepare for the day ahead.

And what a day it was.

I got down to the Mall early, as I felt I needed a close-up view of the Capitol to inspire me. As I made my way back to the Hart Senate building, I was struck by how so many groups were there to advocate, some wearing t-shirts like us, or wielding signs with their personal asks.

It reminded me of how much need there is in our country.

It was a reminder of how much need there is in our world.

After a brief trip through security, I decided before I practiced my speech one last time, that I wanted to get the lay of the land. So I quickly scoped out where Senator Booker’s and Senator Kim’s offices were located, glancing into every office I passed.

Some offices had multiple groups, some of whom were speaking to aides from couches in the waiting area.

Some were pitching their causes in hallways.

None looked more passionate than us.

Finally, the time came for the NJ contingent to meet, and head to our appointed meetings with the offices of Senator Booker and Senator Kim.

The meetings went beautifully. We found both the legislative aide we met in Senator Booker’s office and the legislative correspondent we met in Senator Kim’s office to be attentive, empathetic, and interested in our pleas.

We watched them take notes as several of our leaders, Pat Miller, Lisa Parles, Mitch Baum, Loretta Boronat and Jonah Zimiles, among others, deftly wove facts with faces as we shared photos of our loved ones, and stories to illustrate the crises we are facing within our own homes, crises shared by thousands of other families, 42,000 in NJ alone.

Between the two meetings, we all got to share our truths.

A story of a child in so much abdominal pain he leaned dangerously over a windowsill repeatedly in the hopes of making it end.

A vignette of a father, whose young daughter asked him at a blood draw for her and her profoundly affected sibling, would this procedure help her brother find his words.

A tale of a warrior mother, interviewed by Newsweek twenty years prior, who asked the reporter, if she could only publish one sentence, let it be “What happens when they grow up?”

Tragically, with the housing crisis, and the potential eradication of any meaningful access to Medicaid, we are still asking that question decades later.

But the real rock stars of our day were the profoundly autistic adults, who accompanied the NJ contingent to the meetings.

Danny.

Avika.

John.

And of course, their caregivers, who moved mountains, who were incredibly brave, conquering logistics of which I am simply in awe, to have them participate in this momentous day.

A picture may paint a thousand words.

But nothing makes an impression more than the living, breathing face of profound autism right in front of your eyes.

It is difficult to look away.

I was privileged to tell my story twice that day as well.

I was prepared by friends who worked on the Hill that aides and correspondents might seem stony-faced, impassive, as they listened to us.

To tell the truth, I preferred that outcome, as it took all of my strength to share my three minute tale.

A tale of my twenty-two-year-old profoundly autistic son Justin, who would no longer have a day program to attend if drastic cuts are made to Medicaid, a program where he has friends, goes out into the community, and thrives.

An appeal to prevent extreme cuts to Medicaid, because if enacted, my profoundly autistic son would no longer have a home to reside in, or anyone to care for him and his 24/7 needs, when I am gone.

A supplication to stave off radical cuts to Medicaid for my husband Jeff, who developed early onset Alzheimers at age fifty-five, who will someday need Medicaid services, for as a retired school teacher, I will never have the two million required for his long-term care.

I told my story for the first time in one of the cramped offices of Senator Booker, about eight of us at the table, the rest of the group encircling us, his legislative aide as physically far away from me as possible.

I know Gloria Nunez heard me. We maintained eye contact for three consecutive minutes.

That is a long time when you are listening to a petition like mine.

What I didn’t know then, and didn’t learn until the NJ debriefing, was that her eyes, like mine, were filled with tears during the entirety of my desperate entreaty.

I was heard.

On that glorious day, all of us were heard.

And finally, for one day, we as caregivers, and most importantly, our profoundly affected, brave and resilient children, all had a place at the table.

I Can’t Believe It’s “Up”

Thank you, as always, for all your support in our endeavor! Last night, my son saw the movie “Up.”

This does not sound like a remarkable sentence, particularly since it’s been out almost seventeen years;  plus, it being his favorite, he owns the DVD and a backup DVD as well.

However, those eight words are remarkable.

They are triumphant, because last night my son saw them in a room with other profoundly autistic adults, the same exact room we had to leave two years ago because his often loud vocal stimming was disturbing the other attendees, and I felt we had to leave.

That night, the clientele was other autistic adults on the more moderate edge of the spectrum, a few adults with mostly physical disabilities, and a few with Down’s Syndrome.

As soon as the film began, you could have heard a pin drop.

Except for the fact that within minutes, my son was enthusiastically sharing his joy, quite loudly, with the rest of the group.

No one asked me to leave. They solicitously asked if they could help, and not in a “please for the love of God leave” type of way. But after ten minutes when I couldn’t get him to stim more quietly, we left.

And I knew I had a choice.

Be depressed that the event I had asked the director to create, the one I’d been working on for almost a year, couldn’t work for my son.

Or go back to the drawing board with her, and ask her to tailor the situation to make it work for him, and other profoundly autistic adults just like him.

Because the truth is, even within the world of disability at large, profoundly autistic children and adults are their own tribe. Nothing can be one size fits all for them, in any aspect of their lives.

And last night, Justin’s needs were heard.

There were two movie rooms simultaneously showing the same film. One room with quieter clients, and one where enthusiasm could roam free.

We chose the latter. And my son gleefully sat through the entire movie, looking at me periodically as if to say “I can’t believe it’s Up,” and had an entirely successful evening because an individual in a position to address those needs, did.

That vision to accommodate my son’s and my friend’s autistic sons’ true desires, is at the heart of what HomeLife21 is trying to create for our children.

To gift them autonomy in their decisions that meet them where they are, not just present them with a typical “group home” schedule of chores and outings that they may not be interested in or able to handle.

To ascertain their preferences; and give them access to what they actually enjoy, while making sure they are safe and supported and developing skills of indepenence.

To individualize their time so they can truly live their best adult lives, with the dignity of their own choices, to their full potential as human beings.

This is the soul of what we are trying to do, with your help.

And we won’t rest until we do.

As always thank you for your support!

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.