These Last Two Years

I feel like I am not caring for Matthew well (because I am trying to work at home) and I feel like I am not doing my job well (because of all the time Matthew’s care requires). It is exhausting and I fear I may end up in the hospital like Matthew’s Direct Service Provider, if we don’t resolve this soon.

These are my wife Kathy’s words, written recently in a longer response to an intellectual disability advocate’s request for this year’s Autism Acceptance Month. They asked that both Kathy and I make a statement about the absolute need for caregivers to help families care for their loved ones who live with autism. Kathy’s fear is very real. Now it’s my turn to write my statement.

These last two years have been so hard. Perhaps the hardest of our lives together.

Not just for us—for everyone reading this, I have no doubt.

The pandemic has been brutal.

During the past two years trying to navigate safely through COVID, a fair number of other challenges arose for us. Everyday life didn’t stop because of the pandemic. Our refrigerator and its freezer broke down and needed to be repaired. As did our dryer. Our washing machine and dishwasher each broke and had to be replaced. Our furnace was on life support and we needed a new one. Our roof lost an increasing amount of tiles in turgid rainstorms and unusually heavy winds. It was just replaced last week. The loans we had to take out for those last two big-ticket items will cost us until we’re 90. Literally.

When the dishwasher broke, it sent streams of water rushing down into our basement, right over where my home office is located. It happened on the very day that the newest book I co-authored, Listening 2by2: A Paradigm Shift for Leaders (That’s When the Magic Happens!), was having a public launch. In the midst of final preparations for that big event, I was moving soaking wet books, sopping up water from the carpet, picking up fallen and crumbling ceiling tiles, and placing buckets around the floor to catch the water that continued dripping down. For three months, when I’ve been working at home, I’ve been working amidst a mess, a mess artfully hidden from Zoom meetings. The water damage cost me a printer, two bookshelves, a stained rug and more than a dozen ceiling tiles. After three months, workers are here at this moment to repair all the damage: Replacing the ceiling, painting the walls, and cleaning the carpet.

So, there’s that. Then there’s the anxiety and concern that COVID has brought to our emotional and mental health. I’ve literally had an anxious feeling in my stomach for the duration of the pandemic. It manifests itself most at 3:00am. Most nights, I wake up and often struggle to get back to sleep. Anxious thoughts swirl like pinwheels in my mind and there are times I just can’t shut it off. It’s not unusual to simply give up, give in, and get up by 4:30am. I’m getting a lot of reading done; I’m well-versed in the news, which only exacerbates the problem. The unrelenting COVID news, the politics of it all, the anger and recriminations that have become an increasingly harsh side-effect of COVD’s reign of terror, certainly don’t help. And now there’s the war in Ukraine, a country where I’ve been on diplomatic missions a half-dozen times and where I have friends. Thankfully, I’ve been able to be in regular contact with them as this horrid and heartbreaking aggression goes on.

Finally, there’s another toll, and the main reason why I’m writing. This month—Autism Acceptance (previously Awareness) Month—I’ve been asked by two separate organizations to write about my experiences living with a child who lives with autism: An intellectual disabilities advocate, as well as my colleagues at Someone To Tell It To, the nonprofit I co-founded which provides compassionate listening services and educational opportunities to individuals. As the father of a son with autism, if sharing my story can bring awareness, acceptance, and additional help for those living with autism and their families, I’ll write and write and write. If it can bring sensitivity, patience, and understanding for those living with autism, I’m certainly willing to do it. I’m passionate about helping anyone living with autism to know that they are not alone. I’m also very glad to advocate for the direct service providers who care for people like my son Matthew on a daily basis, so that we can work and make a living and pay taxes and provide a good and safe home for ourselves and our son.

If I can be an advocate and a voice to urge governmental agencies to remember the many people living with autism, I will do it every time I am asked, every time I feel I might make a difference. If I can help to bring awareness to the extremely challenging circumstances that families with children who have autism have had to experience during the pandemic, spotlighting the need for more and better services and support for children and families, I will do it.

The fact is, Matthew hasn’t been to his daily weekday program for more than two years now. It’s still not safe, even though he’s vaccinated and boosted. He can’t wear a mask. He doesn’t understand physical distancing or hand washing or anything about the coronavirus. He would not have the ability to fight the virus if he got it. As someone who lives with diabetes, has had two heart valve replacements, and is a cancer survivor, my wife Kathy’s immune system is also compromised. We worry about anyone bringing the virus into our lives. I can’t express my sadness and frustration with those who have not taken this virus seriously—and who rush to declare the pandemic over—strongly enough. That lack of seriousness is a direct affront to the well-being of our family.

So, Matthew’s been home most every day since March 2020. This is a young man who loves to ride and get out in public. He’s not the least bit sedentary. He needs action and movement and changes of scenery. He thrives on routine, and when it’s disrupted, so are our lives. Profoundly. We do our best to adapt, to not complain, to not whine. But it has been incredibly hard.

We have depended heavily on his personal direct service providers for the past two years. Our main provider has been extremely loyal and reliable. For the last two years she has worked with Matthew 40 hours a week, most weeks, so that Kathy and I could continue our jobs. But she has had some very serious previous health issues, and Matthew’s care can be physically challenging and exhausting. Just recently, she was admitted to the hospital with pneumonia and dehydration and was there for two weeks due to renal failure. She now must get dialysis 3 times a week. Since then we have had to juggle our schedules to care for Matthew each day. Kathy has needed to use up many precious Paid Time Off (PTO) hours to do this. As of April 1 this year, Matthew could have returned to his day program if there were available staff to provide the one-on-one support he needs, but direct service providers are hard to find, and good direct support providers are impossible to keep due to the low wages and lack of benefits many receive. We are desperately waiting for a call from Matthew’s day program telling us that additional caregivers have been hired so that he can start back there soon.

The strain of all this is why Kathy (and I) have deep concerns that she may end up in the hospital, too.

When the pandemic first hit and we all had to be home, it was a tough few weeks. I worked from home and ultimately didn’t see my nonprofit partner, Tom, in person for five months. Even then, we had very limited direct interaction for the rest of 2020. Working from home was extremely frustrating while trying to care for Matthew, who requires constant watching and attention and interaction. He can’t be left alone. The inside of our home has deteriorated rapidly with him being here all day, every day. The walls and door jams are scuffed with black marks everywhere from the handles on his wheelchair as he propels himself around the house, bumping into and careening off of door jams, cabinets, furniture, and our feet. Upholstered sofas and chairs in our living room all have holes torn in them from his wheelchair running into them. We have black and blue marks on our arms and legs from being run into; Matthew can’t help it. His fine motor skills are minimally-existent. The floors are covered in crumbs from dropped food. The floors are sticky from spilled juice and milk. Paint is peeling. Drinking glasses and ceramic plates and bowls have been broken. All because Matthew cannot yet return to his daily program, his daily routine.

Nerves have been frayed.

Shortly after Matthew’s primary caregiver was allowed to come back to help care for him in 2020, she was hospitalized and placed on a ventilator for weeks. It wasn’t even COVID-related, but she couldn’t return after that for months; she was that sick. Another temporary caregiver came for a few months, but was sick a lot, too, and then became pregnant and had to leave due to compromised health. His regular caregiver, whom we love, was finally able to return, but this most recent hospitalization—for her and for us—has been rough.

The emotional and mental toll that this pandemic has taken on our family is horrendous. We’ve lost income. My wife and I are both tired. The relentlessness of this pandemic and the daily onslaught of Matthew’s activity and care are overwhelming at times. Neither my wife nor I are what anyone would call complainers, and so it’s difficult for us to truly spell out just what cost this pandemic has rendered in our home and lives.

We desperately need caregivers who are healthy and who are paid generously for the difficult, demanding work they have to do in order to give Matthew a safe, healthy, and satisfying environment for him to live a happy, contented life.

This is why I write. It’s for everyone else who lives with these profound challenges, too.

And despite all of these challenges, anxieties, and limitations, I wouldn’t trade Matthew’s presence in our lives for anything in the world.