Autism Speaks Advocacy 2025 Forum

Last Sunday I said goodbye to my family, excited and hopeful to return to my second home of Washington, DC, to participate in the Autism Speaks Advocacy 2025 Forum.

For a mom of two adult children on the spectrum, and a husband with early on-set Alzheimers, it was a life-changing three days.

I’m certain it was a daunting challenge to pull off an event of this magnitude, all orchestrated down to the last detail by Allee Smith, created with dignity and respect in mind for all participants, whether advocates, parents, or support professionals.

With careful foresight, our initial training day took place in the National Guard Museum, a fitting forum to educate us on how to advocate to protect our loved ones. We were able to sit with other participants from our home states, twenty states in total.

This gave us the opportunity to get to know many of the people with whom we would be traveling around the Hill to promote Autism Speak’s two “asks”.

To ask our legislators to deliver on the promise of the Autism CARES Act by fully funding its programs in the FY26 federal budget.

To further ask them to support additional legislation that improves autism service and supports.

We were fortunate to hear many passionate leaders speak about such topics as services and supports for all people on the spectrum, progress that has been made on the scientific front, and successes in advocacy that have been made since Autism Speaks was founded twenty years ago.

For me, the most powerful forum of the day was conducted by Dr. Andy Shih, Chief Science Officer, Autism Speaks; Dr. Helen Tager-Flusberg, Founder of the Coalition of Autism Scientists, as well as Professor Emerita, Boston University Department of Psychological and Brain Sciences; and Dr. Kristin Sohl, Founder/Executive Director of ECHO Autism Communities and Professor of Clinical Pediatrics at the University of Missouri School of Medicine.

Listening to Dr. Tager-Flusberg speak so humbly regarding her incredible work from a half century ago to convince her peers that genetic origins needed to be studied regarding autism, was particularly pertinent to my family.

Due to her advocacy and the countless hours of research performed by scientists nationwide, much of that funded by the Autism Cares Act, CHOP (Children’s Hospital of Philadelphia), was able through whole exome gene sequencing to discover my family’s autism gene.

My youngest son now knows the reason for his struggles, and exactly what his chances are of passing on this gene to future progeny.

That information has been priceless to our family. I was able to share this finding with Dr. Shih after the panel concluded, and to thank him for his part in bringing research to fruition for our family, and thousands of others.

We both had tears in our eyes.

Later in the day another panel educated us on proposals currently in front of Congress related to supports and services for people with autism and their families, and discussed their four priority areas for advocacy: Medicaid, caregiving, education, and financial empowerment. Watching their role-playing as they acted out how things might go in our meetings with legislators the next day was enlightening, with Stuart Spielman, Former Senior Vice President of Advocacy, and Lisa Belcastro, Director of Public Policy, presenting different scenarios we might encounter on Hill Day.

After their panel concluded, I felt informed, and empowered.

We were given time afterwards to create our personal “asks” with advocates from our states, encouraged to weave facts with our personal anecdotes.

Autism Speaks exhorted us to tell our stories; advocates, parents, and professionals alike.

We adjourned for the day, and returned early the next morning to the National Guard Museum for a rousing sendoff from Annette Addo-Yobo, Miss Texas 2024 and First Runner-up at Miss America, as well as last minute logistics. There were a substantial number of participants from my home state of New Jersey. We had realized the day prior that during some meetings with our legislators we would all be together, and for some we were broken up into smaller groups so that we could all meet with legislators for whom we were actual constituents.

We figured out our logistics, got into Lyfts generously provided by Autism Speaks, and embarked upon an unprecedented day of advocating and sharing our families’ truths.

The highlight of the day for me was getting to spend over an hour with Congressman Chris Smith (my representative in Congress), his legislative aide, as well as David Sitcovsky, Vice President of Advocacy, Keith Wargo, Autism Speaks President and CEO, and his lovely wife Anne.

In the taxi on the way over from the Senate side of the Hill (it was a thousand degrees at 4:00 PM, waiting for a Lyft was no longer an option), I realized it was most likely that the rest of my NJ contingent would not make the meeting in time as they were in Senator Andy Kim’s office. The attendants at the meeting would most likely be just several of the most influential people in Autism Speaks, the Congressman, his aide, and me.

I reminded myself to come up with a few important points entwined with personal anecdotes.

I urged myself to remember I was his constituent.

I told myself to make my community, and my sons, proud.

We were there for over an hour-and-a-half, an unprecedented time for any Congressperson to spend with his or her constituents. I listened as Anne spoke eloquently regarding employment issues, and the ongoing need for better training for medical professionals both in diagnosis, and throughout the lifespan.

After establishing a connection with Congressman Smith regarding a mutual friend who was the impetus for the Autism Cares Act, I was able to speak my concerns.

My wish that the fact that only 6% of the research funding from the Autism Cares Act goes to the profound autism segment of the autism population, although they encompass 30% of the autism spectrum, needs to change.

I echoed Anne’s statements regarding the need for better training for all professionals, and compassionate care, across the spectrum.

I shared the woeful inadequacies for autism services for families in crisis in New Jersey, one of the “better” states for such services in our country. There is only one hospital to turn to, and scant resources in the state equipped to support our population, for follow-up and continued care.

I described the overwhelming fears of my family, my friends, and countless others throughout Congressman Smith’s constituency, regarding cuts to NJ Medicaid.

I told him we were terrified of the potential loss of day programs; the closing of group homes; and the loss of healthcare.

I shared my fears my husband would never get a Medicaid bed when he requires longterm care.

Congressman Smith listened intently, and with compassion, told me he wanted to know what happened down the road to families in our state.

I looked him right back in the eye, and said I would.

It was a bucket list adventure for me.

The next day, in the actual Capitol building, a fitting place for a sendoff, we heard many passionate recounts of meetings that had transpired the day before, and how crucial federal action is in driving meaningful improvements in autism research and services for improving the quality of life of autistic people, and their familie,s throughout their lifespans.

Amy Gravino, Emerging Leader for Autism Speaks and self-advocate, among others, spoke eloquently and honestly about her struggles, her triumphs, and her work in the fields of sexuality and depression.

She left me in tears. I am confident I was not the only one in the room.

I had to leave soon after she spoke, and make the long trek back to New Jersey.

I was irrevocably altered by this experience, by this opportunity to have a voice in which to share my concerns for my sons, my husband, and my community.

I felt heard.

Prior to our event, Autism Speaks asked all participants to write something about our loved ones, and send photos for a story we could leave behind with legislators.

One of my photos is of my then twenty-one-year-old son Justin in his riding helmet, about to engage in a horseback riding lesson which he so adores, partially funded by Medicaid.

One of the requests Autism Speaks had was to recount my hopes for his future.

I imagine many families share my sentiments.

I wrote that I hope he will have choices in his life; a sense of community; and peace.

I believe the one hundred and twenty participants in the Autism Speaks Advocacy Forum were given the unparalleled opportunity to make these requests for their loved ones too.

Impossible Choice

This might not be my greatest piece of writing. Forgive me. It’s nearly the end of the month, and it’s my turn to write the blog post.

We are in crisis.

What does that mean?

It’s something I often hear people say and see posted in Autism groups. I don’t know how else to describe our life these days. I guess it’s when you reach the point that you know that the way things are is utterly unsustainable. We all have days when we think we can’t do this anymore, but then we wake up, it’s a new day, and we keep going.

Crisis feels like knowing that we cannot continue this way.

We went from “wow, can adult life really be working out this well?” to “I cannot keep this up; This is unhealthy for everyone,” in a matter of months.

In September of last year, my son was kicked out (“suspended”) from his day program. A program that, for the better part of the year after he graduated from high school, had been working quite well for him. So much so that I told everyone I knew about it. But something changed in July and August. What started as a small program grew to a much larger day program with different staffing ratios and many more participants. It doesn’t matter what happened; it wasn’t working for my son, and instead of providing him with the support he needed to be successful, he was expected to “go with the flow”. By the time he had the major aggressive behavior that got him kicked out, it was too late. There had been too many weeks of improper reinforcement, a lack of insight about what the function of the behavior was, and little to no attempts to really communicate with me before the escalation.

There was talk of bringing him back if he could “get it under control”, but we all knew there was never any real intention of doing that. They were becoming yet another day program that doesn’t accept individuals with challenging behavior. There is nothing but those kinds of programs in my county, and the ones that do have waiting lists a mile long. There are several innovative programs; farms, cafes, fitness-oriented, etc., but none of them accept adults with challenging behavior. Even if that behavior is not something that happens all the time. If you have a Behavior Plan, you are not eligible.

After they “suspended” my son, they sent a staff member (Direct Support Professional/DSP) to work with him. Great. She took him out in the community a few times locally, and he did fine. I had asked the agency to provide a behavior plan and requested supervision, specifically a Board-Certified Behavior Analyst, to help prepare the DSP. They told me that it was not available because they don’t bill DDD for Behavioral Supervision.

(Each individual receives a budget from the state when they qualify for disability in NJ. Each “Tier” is based on the individual’s level of required assistance, and each has a different annual budget. That budget is divided into sections with different dollar amounts. One section is for Day Program, another for Goods and Services, and another for Community Inclusion. Everything is billed down to the minute, and there are a lot of budgeting gymnastics that take place in order to make things work for the individual. But each agency can differ on how they perform those budgeting gymnastics in order to stay compliant with the endless pages of rules and regulations they must adhere to. It’s a nightmare.)

More and more, agencies are choosing to make it easy for themselves and simply NOT OFFER SERVICES to individuals who need behavioral supports. One of the ways they do this is by not offering them as DDD items, but items that can only be paid for through private insurance. This is why we were told we couldn’t receive this support. BCBA’s for example. One agency will bill the service to the budget in a creative way, the other says, ‘No, can’t use the budget for that. If you have the means, you can pay out of pocket.

The next time my son went out with the DSP, she misread him, and a major behavior ensued. Screaming, grabbing, pushing, hitting.

The DSP didn’t know how to handle it. He was aggressive and unsafe, and the police were called. He was ultimately transported to the hospital in restraints. And that was the end of support from that agency. That was early October of 2024.

It's now July 2025. We have not been able to find an appropriate day program. We have struggled to find Direct Support Professionals to work with my son. For months, there was just literally no one responding to our requests. When we did try someone out, they would last for one session. You must understand that the only qualification to be hired as a DSP is to have a valid NJ Driver’s License and not be a criminal. Agencies then offer training, but they only pay $17-20 per hour. Who wants to get hit, screamed at, sometimes bit for that kind of money? Let’s just say, it’s hard to find people who have the skills we need.

We decided to pay out of pocket for a full Functional Behavioral Assessment with an agency that proposed to evaluate what the underlying cause of the behavior(s) is/are, and create a behavior plan that anyone could implement, and that they would train to implement if need be. We signed on in December. That process didn’t begin until nearly April. It is still incomplete.

Meanwhile, we had months of daily screaming, self-injurious behavior that we NEVER had before, loss of language, and extreme anxiety to the point that we could not leave the house. Non-stop, all-day behavior “management”, if you can even call it that. Survival is what we call it. We were watching him regress before our eyes. Watching as anxiety and fear of getting in trouble, or losing things because of behavior, escalated to the point of being debilitating. One day, he’s with his friends, going out, having fun, having a life. Next, he’s being ignored, expected to tolerate 20 people in a room talking over him, and then sent home never to return. No outings. No friends. No purpose. And no idea when those things might return.

At one point, my son started to scream in bed as he was going to sleep. He would get close to sleep and start to scream, hitting his head. That had never, ever happened before. Until then, I would put him to bed, he’d watch his iPad for a while, and I wouldn’t see him until the morning. Suddenly, I needed to stay with him until the Xanax kicked in and he could fall asleep. The neurologist thought he might be experiencing PTSD from the ambulance episode and be having flashbacks. We added meds. Things were unraveling before our eyes, and we had NO SUPPORT. Take him to the ER, they said. Get him admitted, they said. They’ll eventually take him into Trinitas Hospital for Behavioral Health (the only hospital in the state with a dedicated unit for individuals with Intellectual Disabilities and Autism), where they will keep him until he is stable. This did not seem humane. We came close, but we never ended up doing it.

We did spend time in the ER, however. After the nighttime screaming, my son began waking at 5:00 am, coming into my room and hitting me before I had even opened my eyes. We ended up at urgent care because I suddenly noticed he had blood in his ear. He had an ear infection that he never indicated was bothering him. Over the years, we had worked very hard to help him communicate how he felt physically. Hungry. Ear hurts. Head hurts. Belly ache. Gone. Who knows how long he’d been in pain? The regression in his communication was now interfering with his health.

Urgent care didn’t prescribe a long enough course of antibiotics, so in a week, we were back at the doctor with the other ear infected. Another 10 days of antibiotics. After that, severe diarrhea. Bloody. Abdominal pain. Crying, hitting me. Not eating. Tested for C Diff. Back to the ER. CT scan. Nothing to explain the symptoms, but oh, guess what? He has a kidney stone. Follow up with a urologist.

The gastrointestinal symptoms continued. Consulted with a gastroenterologist. Colonoscopy. No answers. Endoscopy, no answers. Lots and lots of Dr. Google. Down one particular rabbit hole, I read that Metformin, which he takes to counter the weight gain of his other meds, could cause these symptoms, but he’s been on this for years. I mentioned it to the gastro. “Oh, good thinking. Yes, that could be causing those symptoms. Stop giving it to him for a week or two and see how he does.” Thanks very much. Can I please be paid your full fee?

While all this was going on, we realized that we had reached our mental health capacity to support our son at home and made the impossible choice to ask for emergency placement. This means asking DDD to determine that he is in imminent danger of being homeless or that we are unsafe. This is a fun way to think about your child if you’ve never had the pleasure.

First, your Support Coordinator has to submit an Intensive Case Management request. Forms, documentation, a parental letter to describe what is going on in detail, and what kind of danger you’re in. And don’t get me wrong, one wrong push in the bathroom and there have been many times I’ve pictured my head slamming into the tiles or the corner of the counter. Or tumbling backwards down the stairs. Sometimes, if we forget to remove the knobs from the stove and turn off the valve that we installed to shut the gas, he’ll start the stove and make a “campfire” out of the wooden spoons.

One day, he didn’t even push me. I was just trying to extricate myself from his constant pawing at me, and I lost my balance and stepped backwards on a set of doors that were lying flat on the dining room floor, waiting for an opportunity to be installed. I didn’t even realize I was cut, but I ended up needing 11 stitches on the bottom of my foot.

After the ICM request, DDD comes out to interview you, and you need to prove that your adult meets the “level of care” necessary for Intensive Case Management. If they agree, this will give you early, emergency access to the Community Care Plan (CCP). This is a much larger budget that can support residential placement or full-time, in-home support. This is the waiting list that is 10 years long. Unless there are dire circumstances upon high school graduation, most everyone is placed in the Supports Program that I mentioned above. The only way to get CCP support earlier is if a parent dies, is terminally ill or incapacitated, or you or your child is in imminent danger. Naturally, my son was as docile as a lamb the day they were here. But they could tell by the way we flinched every time he came in the room, and by our hypervigilance and frazzled demeanor that we were sincere.

We easily met the criteria. And make no mistake, it’s not like there’s a placement immediately available for your adult child because they are so dangerous. And the ones that might be available are not appropriate…people out of rehab or purely severe mental health issues. Where you go and who you’re placed with matters.

You have to wait for referrals, for an opening somewhere. All while hoping it’s not in any of the places that have recently been reported to be neglecting and abusing disabled adults. In some cases, individuals have died. These are horror stories.

In the meantime, we have access to a much larger budget, so we can pay providers for the support my son needs. That is, if we can find them. DSPs to take him out in the community. DSPs who can take him to classes in which he otherwise wouldn’t be able to participate. In the Supports Program, you don’t have the resources to pay for both the DSP (remember, these programs don’t bill for behavioral support) and the activity they might like to attend. So, while there might be a music class that your adult likes, unless you can provide someone to go with them, they aren’t going to be able to go. And that kind of support eats up the budget very quickly. With access to the CCP, we might have the resources to eventually cobble together a schedule that he might actually enjoy and that might give him some semblance of self-respect. Lying around at home with your 60-year-old parents when you’re in your early 20s is not what anyone wants. Intellectual/Developmental Disabilities don’t spare us that developmental milestone.

On the one hand, my son indeed wants more independence from me, on the other hand, whenever I leave the house, my son spends every single minute asking where I am, screaming, and hitting his head. For whatever reason, Dad isn’t cutting it for him, and when I have to go to work, or take my daughter somewhere (oh, yes, I have a 17-year-old daughter with anxiety, panic attacks and PTSD, not to mention her own health issues of late) it’s non-stop torture for dad; Nothing he can say or do makes it stop except Xanax.

This has been life for months now. We don’t leave the house unless it’s necessary or to take our son for one of the many, many VERY FAMILIAR drives he will tolerate. He won’t get out of the car and engage with any of the places that he used to love, but he’s content to drive. We stay home and deal with endless trips to the bathroom, belly pain, cleaning the bathroom, doing laundry, and for me, lying on the couch where my son lives, glued to me from morning till night. My 24-year-old, adult man-boy, who is pressed into my side and follows me everywhere I go. If I get up to go to the kitchen, if I go to get dressed, god-forbid I need to use the bathroom or take a shower. He literally stands outside banging on the door until I come out. I do everything at lightning speed and with full anxiety.

There are glimmers of the boy I know. Occasionally, he seems to be pain or anxiety-free and laughing or smiling about something. He wants things to do, to look forward to. (Sadly, today I took him back to the doctor for yet another ear infection, and he was happy to be somewhere where he knew what to expect.) He wants purpose and routine. He wants to be with peers, not just adult caretakers. I know he wants interaction with the opposite sex, but he doesn’t understand and can’t handle it. There is literally NO ONE to help with THAT! Even the professionals won’t touch that one with a ten-foot pole. Too much liability.

So here we are. We ultimately got access to CCP. This is excellent news. We have already gotten a referral for a placement. This is terrifying. And confusing. HL21 is supposed to be for Jackson, but it’s not ready yet. He needs support now. What if we place him because we have to, and he finally acclimates and is relatively happy? What do I do? Move him when we are ready? Would that be fair to him, even if the placement isn’t ideal in my eyes? How will he react to being “sent away”, and also what kind of life is this for him here? This is an impossible choice.

I don't make New Year’s Resolutions, but I do select a Word of the Year. This year’s word (selected back in January) is CHOICE.

Ironic, in that I feel like I’ve had absolutely NO choice in any of this.

I picked this word because I needed to let go of what happened with the day program in the past and deal with what was in front of me. I felt I needed to make choices based on where we were at the time, and choose what to do moving forward.

Instead, I’ve felt like a victim of circumstance and Jackson’s behavior, not like I’ve made any deliberate, intentional choice about anything. And now, I’m in a situation where the choices all seem less than ideal. Impossible.

This is the reality of Adult Services in NJ. I know it could be much worse, and it is for many families. Families who won’t or can’t choose a residential placement. Families that don’t know what their options are. Families that are spending every waking moment just trying to stay alive. With holes in the walls and holes in their hearts. Blackened eyes, missing teeth, fecal smearing, and resignation. This is not ok. This is not humane. This is a crisis of epic proportions that is not isolated to New Jersey but exists across the country. Indeed, it’s much, much worse in some states because, as difficult as the system is here, we’ve had some decent advocacy, and our statewide implementation is better than many places. Some states have absolutely nothing.

There needs to be a massive change in how services are structured, how the CCP Waiting List is organized, and how rules about services are implemented. Changes need to be made so that services can actually be delivered when and how they are needed, not according to some one-size-fits-all handbook of rules. And for heaven’s sake, we’ve spent enormous resources over many years to improve services from the age of 3-21 (they are SO much better now than when my son started school at age 3). What a waste that we just let them fall off the cliff once they leave the mandated support of the education system at 21.

I hope we make the “right” choice for Jackson. I hope we have a choice that doesn’t feel like an impossible one, but one that we can have some degree of confidence in and feel good about making. Our disability system gives a lot of lip service to “dignity and choice” for adults, but in many, many cases of severe behavioral, mental health, or medical challenges, there is little dignity in the choices offered.

As I write this, our federal legislators have chosen to pass the largest cuts to Medicaid (the system that funds healthcare and services for people with disabilities across the country) in history. Funding for private organizations like HomeLife 21 will be even more crucial than it is now. There will be even less choice, and dignity will be reserved for the wealthy. There will be no way to fill the gap left from a lack of federal funding, but we will never stop fighting. I will not perish from this earth without dignity for my child.

If you would like to help, please consider donating to HomeLife 21 today.

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.