There are many stories I want to tell about my family. So many half-remembered holidays and conversations with long gone aunties. Women who smoked Belair cigarettes and would send me to pick blackberries so they could complain about their own families. Stories of how each one of my siblings slowly lost their own religion, and not in a southern way either.  Family stories involving ghosts and demons and the sad stories of caring for my mother. But these are not mine to tell. Even if I tell them from my own point of view, these are stories about real people that I actually know and will have to face again at some point. Some of these people I love. Some of them I don’t.

Over the years many of my friends have encouraged me to write a book about my immediate family. I raised three children, two of whom with disabilities. I’ve written a little already and mostly about my daughter Kathleen who had a visual impairment, experienced developmental and intellectual disabilities, and was autistic. Due to her disabilities, she was the only one of my family members for whom I couldn’t get consent to write about. I have felt guilty ever talking about her but now that she’s gone, I’m free to do so. Kathleen had epilepsy and we believe that is what caused her sudden death this past December.  So, all apologies to the spectral Kathleen, for so many things, but in particular for writing about her now.

 Unless I tell stories about my daughter, I don’t know to manage the array of emotions I feel sometimes simultaneously. Conflicting emotions aren’t uncommon for parents who have children with disabilities. We need to keep them safe but allow them to make mistakes. We have to advocate for their wants and needs which is particularly difficult when their needs are seemingly endless.  There are teams of strangers who all know one tiny part of our children that we have to meet with over and over again. We need to be professional enough in meetings but still fiercely advocate for our kids even when they are adults.  We have to celebrate the sometimes very minor successes they have and continue to plan for an uncertain future. Not that anyone has a certain future, but Kathleen could barely communicate with others. It was hard raising her. But I want to be very clear, as I tell Kathleen’s stories, I don’t want them to become inspiration porn for anybody, especially me.  It’s tempting to veer into hyperbole. That she was in my life to teach me something, if I’m honest I have no idea what that lesson would be. The truth is when I came home from seeing her lifeless, 29-year-old body dressed up in her stripy PJs, I slept for 16 hours straight. Probably the deepest and most satisfying sleep I’ve had since before I got pregnant. 

It was shocking enough that I even had children. I was living in an artist collective when I became pregnant by a man with whom I worked in an improv comedy troupe. We hastily married in the basement of a wiccan priestess. Then I found out I was having twins, and when the girls were three weeks old, I noticed Kathleen’s involuntary pendular eye movement called searching nystagmus. I was lucky enough to have at least one of the two babies developing on a typical trajectory so the differences in Kathleen’s development were glaringly obvious.  Looking for a reason for the nystagmus, we learned Kathleen inherited a vision disorder. This low vision was the catalyst for early intervention and eventually a myriad of almost meaningless diagnoses.  A child psychologists informed me of one saying “Congratulations your daughter is retarded. Now she can get her interventions funded”. As shocking as that sounds now, it was both the terminology used at the time and also not untrue.  Thanks, doc.

I was “food stamp poor”, which meant we worked but qualified for food stamps, day care assistance, and other services. It wasn’t my low-income but dogged determination and Kathleen’s cavalcade of diagnoses that secured her Medicaid through a state funded Medicaid waiver program. I’ve now been through the application in two different states, I can say with some authority that the process sucks. These days I work for a government contractor helping people with disabilities secure and keep these very needed benefits. Suffice to say I feel trauma bonded with the people I attempt to help because the social service system in this country is, well, infuriating.

As if securing the treatment funding wasn’t hard enough, figuring out which unscientifically tested treatment to choose was downright scary.

When Kathleen was diagnosed in 1997, there was a marketplace for nutty interventions to treat the exploding numbers of children being diagnosed with autism. In the olden days, parents discovered treatments maybe at sparsely attended support group meeting or an article in Reader’s Digest. Thanks, to the now arcane technologies like message boards, I met parents from all over the place and spent many hours reading about their treatment choices. I felt lucky to have that virtual community as autism can be so isolating. But as we all know, the internet isn’t real life. Everyone I interacted with seemed so optimistic, but I guess it’s difficult to say “hey, I’m traveling hundreds of miles to inject my kid with pig hormones” and not be all in.

I decided to go all in on Applied Behavior Analysis as treatment using what is called Discreet Trial Training (ABA/DTT). With this therapy, we would condition Kathleen to do seemingly very important things like sitting in a chair and making eye contact and other things that most 4-year-olds are socialized to learn. In typically developing kids, much of their learning requires a certain buy in from them to please us. Kathleen wasn’t every very interested in pleasing anyone. Adding to the challenge of teaching her, verbal communication was not Kathleen’s preferred method. All of our communication to her and from her had to be broken into small “trials”. So, before we could get to the point which we could teach her we had to understand what was motivating her to learn. Not only things that motivated her at that moment (like candy) but using things like her favorite toys had to be used strategically, so they didn’t lose their magical reinforcing power. This meant denying her favorite things until she performed. Some of these small trials, to match colors, or to learn to mand (ask for things) seemed insurmountable at first. Many of the trials remained insurmountable.

This type of learning is rote and routine. Not only did Kathleen need to learn to perform, but she also had to generalize it across settings. What she may do sitting at the kitchen table she may not do when outside. Because this type of changing behavior is difficult, it was recommended to set aside 40 hours a week outside of regular school hours for this therapy. We ran a in-home program from 1998- 2007. I hired and fired dozens of providers, trained everyone, ran meetings and was a one-woman development department. Because, not shockingly, this treatment isn’t free. The whole operation felt like a business with me as CEO.

If you look up ABA/DTT now, you’ll find a lot of folks who consider the therapy a form of torture. I think that many people used this therapy as a way to exhibit control over an uncontrollable situation. Indeed, there were older versions of these types of behavioral modification therapies that used aversive reinforcement, like cattle prods, to illicit responses. That version was obviously illegal and it’s horrific to even think about. Even when we started our home program, some people advocated some form of aversive, like a stern “no” when a child didn’t complete a task. We didn’t run her program like that. I had at least one and sometimes two psychologists overseeing the program. In retrospect, I question the value of some of the trials like the one to teach Kathleen to make eye contact. At the time it seemed very important. For a variety of reasons, this type of therapy as well as many therapy treatments for children, is not able to be replicated in an experiment. She did learn things. But the goal of mainstreaming her into a typical classroom never was realized. Four years after Kathleen’s therapy started her IQ was 20 points higher. It may have looked like success, but she still needed a lot of support to live day to day.

I spent too much time in those years feeling like a facilitator and less time feeling like a mom and these days, it feels a lot like regret.

Partially because I moved to a much less progressive state without the same services we had, and partially because I was just tired of the constant parade of strangers in my house, I stopped in-home therapy. I stopped the years of Occupational Therapy, too. If Kathleen hadn’t mastered a triangle grip by age 14…what was the point? At the same time, her tonic-clonic seizures started so my focus turned more from teaching her things to keeping her healthy. This was work on an entirely different level.

Like many people with autism, Kathleen bonded to the familiar. Almost paralyzed by the insistence of routine and because of the various communication deficits she experienced, I was her interpreter. I was fired from two different academic staff jobs in a row in part because I needed time off to either take Kathleen from school to her Occupational Therapists’ office or I needed to attend some kind of meeting. My son was also having trouble with his own autism diagnosis. My job now offers all kinds of flexibility which kind of burns me because now I don’t need it. When Kathleen turned 22, the same age that her federally guaranteed right to an education ended, I made the decision that she needed to move out of my home.

Moving her was another traumatic experience. The state I lived in was sued by the Department of Justice for years of unnecessarily confining people with disabilities to institutions. Instead of trying to make these institutions better, they decided that everyone with disabilities had to live totally integrated lives in their communities. A very pleasant thought executed with all of the grace of your average dog fight.

Getting Kathleen into the community was working. She couldn’t handle when a different color van came to pick her up for day support. A job was out of the question (not that we didn’t try but turns out she couldn’t stock shelves in the local Food Lion without dropping a few loud F bombs). So, her Medicaid waiver funded staff acquiesced to her desires in her own apartment. Kathleen seemed quite happy as long as she had access to YouTube on her television so she could watch old episodes of tv shows she watched as a kid and an endless loop of tv commercials from 1998. She also took up my habit of looking at houses on Zillow and she read well enough to request to see homes through the Zillow website. If that isn’t a full life, I don’t know what is.

Over the past year, Kathleen had planned a vacation, moved to a new apartment and selected every bit of furniture for her new place from Ikea. She spent her summer going to the pool at her apartment complex and enjoyed a Halloween party at her apartment I was for which I was conspicuously not invited. She never did learn to use a phone to call but would use Facebook messenger to contact me to review the itinerary for my weekly visits. When I would visit, we would talk about the movies she had watched even though they haven’t changed in 20 years. I miss seeing her neighbors many of whom had disabilities. And of course, I miss her. Her routine became my routine. It’s fair to say I’m a bit lost these days.

In my quieter moments, I wonder if I would feel better if she had died living under my roof. Knowing that I didn’t save her life, and feeling like I could have is nearly maddening. But, as my new therapists told me, I’m not God. I take a small comfort in always believing that her life would end before mine. That I would be what is called Vilomah, a parent who has lost a child. It comes from Sanskrit and means “against the natural order of things”. But is it really against the natural order when I already knew it was going to happen? Where is the ancient word to describe me?

These big questions don’t really have answers but unfortunately, like my late daughter, I tend to perseverate on things. It’s a tendency often found in autism and OCD that keeps me stuck on a topic or idea. Like thinking about the 9th grade advanced earth science class that I dropped because I didn’t want to do the extra homework. This inconsequential totally legitimate decision has taken up a tiny corner of my conscious brain for 41 years. Maybe if I would have taken school seriously in 1983, I would have aimed higher than Travel School at Southeastern Academy in Kissimmee, Fl. Maybe if I would have actually gone to that travel school instead of dropping out to go to Ohio State, I would have had a successful career in Travel. It could have happened! In the world before the internet travel agencies were legitimate businesses….I’ll never know. Because shit just happens sometimes. Shit happens to people who have clear goals, too.

My clear goal these days is to allow myself to feel things from the time I wake up until about 7pm. I need lots of feelings to deal the big feelings that happen at my job. When I am off the clock, I’m done with the suffering. I indulge in alcohol and trash tv and anything else that dulls my senses. My PCP who is all of 20 years old (she’s probably older) told me that drinking isn’t good for me. She said I should quit. I thought it was a stupid thing to say to a Vilomah so I ignored her.

Sometimes I think that this big achy question is a gift. Sort of a Buddhist gift; here is your suffering. Everyone has suffering, I know that I’m not special. I know you have your thing, too. Not to brag, but I think my thing is scarier to most people but as I love to say, life is not a competition, just an exhibition. As much as I want to believe this is the end of my suffering, I know it’s not. But I do sleep better knowing that I know how this particular pain happened. As her twin reminded me, Kathleen didn’t die from drowning, or running in front of a car, or being shot by a person at Food Lion who mistook her F’ bombs as a threat. All of those and many other ways to die have cluttered my brain since I saw her run into 4 lanes of traffic when she was 2 years old.

Trauma lives in my body. Relief lives in my body too as well as about 20 trillion fat cells. The stress and anxiety of raising my unique and challenging daughter is slowly leaving me. I’m really good at crying in public lately. I consider that I small win. I’m crying right this very minute at the coffeehouse where I go to write. No one cares, it’s kind of a relief. Maybe it’s an effect of covid, maybe I’m just hungover but no one seems to interact anymore, but everyone is a bit on edge. Like if you scratched the surface of any one person, all of this pain would pour out. But today in this coffeehouse we all made an agreement, no one interacts today. And just for today, that it totally fine. I’m crying here, I’ll cry in the car, and I’ll probably cry at home. Maybe I’ll cry myself to sleep.