What It Looks Like From Here, Part 1

St. Jude
4.25 x5.25 gouache on paper

I base all of my St. Judes on my brother Wally. Wally was born with autism, developed grand mal seizures as a child, and was diagnosed with ALS in 2003. Life has been very hard for my brother, and it has been hard for the people who love and care for him. Born at a time when no one yet understood the mind of the non-verbal autistic child he was labeled as "severely mentally retarded". My parents were told that he would never progress, would never understand anything they said, and were advised to place him in an institution. Fortunately, although they were young parents charting completely unexplored territory, institutionalizing their son was simply not an option for my parents. Given the option of dumping my brother (and parents back then were encouraged to do it) they chose the harder road.

I've written a lot about my brother Wally. I absolutely love him and I am so proud of him and all that he has accomplished. I am also very grateful to my parents for sticking by him. They are good people who did their best under immense stress and pressure. Were they perfect? Of course not. If your parents are perfect then you'd better check the basement for pods. Being perfect is not what is required. The ability to grow, to change and adapt and enlarge your spirit is. And my parents had to achieve this in the midst of what often felt like a disaster zone. So this time, I'm going to write about the rest of us.

First off, looking back on my childhood, there was not much grace and dignity. That comes later. I remember the chaos of Wally's seemingly endless bouts of screaming and throwing himself on the floor, his destruction of anything that wasn't nailed down (and some things that were), and the fear that he would bolt into the road and be killed by a car or stick his arm into the washing machine and break it to pieces because he was fascinated by the spin cycle, and how we had to constantly guard the kitchen because anything he got a hold of-raw chicken included- he would swallow whole. I remember the sadness, the frustration, and the anger swirling around. I think we all went through periods of depression, Wally especially. Where was this all leading? What would happen to Wally? Would it ever get any better? Any easier? We were in the soup up to our eyeballs, living from wet bedding (mine included) to food grabbing to grand mal seizures to angry loud knee jumping and yelling all day and night....you get the picture.

My Mom was a stay at home mom. My Dad was ALWAYS at work. ALWAYS. Among the first conversations I remember my parents having is my Mom saying "You're not going in, are you? It's Sunday!" and my Dad saying something about something he had to do. I also remember my Mom calling my Dad, who worked just up the road at the family business, and telling him dinner was ready and Dad not coming home. It was this whole big thing. My Mom got so mad she pitched his supper out the door one evening. Even though I was too little to really understand it was evident that my mom felt abandoned.

I think that any parent of small children would feel unsupported if their spouse put work ahead of family time, but for my Mom the stakes were higher. Among my first memories is Wally, red faced and screaming, lying on his back on the living room rug with his knees bent under him and his back arched in an impossible curve, obviously in terrible pain. Mom and I stood by helplessly as that raw, animal sounding screaming just went on and on, and Mom was just beside herself. He would stop, eventually, but not until my poor Mom had run the emotional gamut and was completely wrung out and I was sick with fear. If my Mom felt so out of control then anything could happen to me. I didn't feel safe.

My Mom worked really hard at trying to help Wally feel better. Way before there was an internet she found as much information as she could. She learned all about food allergies, food additives, and the evils of processed foods and refined sugar. Long before it was cool we were eating tofu and wheat germ and home made bread. My Mom put up with my and my older sister's loud complaints over this state of affairs and did not waiver from her course. She learned about the connection between autism and gastric distress, about seizures and what could trigger them. She left no stone unturned. She is a testament to determination and the kind of mother love that is in it for the long haul and I am in awe of her. Even when she was tired and angry and sad she tried and tried.

When my brother almost died due to the ALS that has wasted his body I saw on her face such sorrow and resignation. "He's gone," she said softly. I could tell that she had been privately preparing herself for this. My Mom has become, since those early, crazy days, calm and stoic in the face of crisis. It has often occurred to me that she has not only had to witness her son physically suffer his whole life but has had to watch over his safety the way you look after a toddler, only for forty plus years instead of the usual three or four. As Wally's behavioral problems have waned and his physical needs have increased exponentially-he is now using a trach, vent, and feeding tube- our Mom has remained as dedicated to his care and to doing everything she can to help him stay in optimal health as she always has. Even now, she leaves no stone unturned.

This past Christmas I was looking through a batch of wrapping paper that had come from my Gramma Sara-who saved everything- and I found a piece that instantly brought me back to the Christmas my Mom used it to wrap all of our gifts. It is really pretty, but a certain kind of pretty that I'll always associate with my Mom. I remembered the way she would see a certain something and say -"I like that!" and I would be pleased because she was pleased. Looking at that pretty piece of wrapping paper that I so completely identified with my mother, I remembered how I always noticed, every year, what she had chosen to wrap our gifts. Even when I believed in Santa Claus I knew that wrapping paper was all Mom. She always chose something that was so right. And that made me think of how she always made everything so nice. She made our house pretty, she brought us to museums, she found the best place to have lunch in Saratoga Springs and would take my sister and I there, and she always loved every little thing I ever made, and made sure I had all the art supplies I needed. It occurs to me now how much strength and generosity of spirit it took to do these things in the face of her child's disability, a disability that by it's nature was so huge it unrelentingly pervaded every aspect of her life with no indication of letting up. Ever.

I don't know if Mom ever prayed to St. Jude, but she didn't give up in the face of a seemingly hopeless situation. I don't know how she did it. The choices she made, and everything that happened good and bad have proven to be the biggest gift she could ever give to her children. When you grow up watching the adults in your life grapple with the seemingly impossible, when you see them at their worst and you see them at their best, when you watch them try, when you watch them surrender, you learn a lot. When you watch them not be perfect, when you watch them grow and change, you learn a lot. When they show you a capacity to love that is so huge it weathers anything, and I mean anything, you learn a lot. If you are paying attention, you can put what you've learned to good use, and therein lies the ultimate gift our parents give to us, if we can see it clearly.

Furthermore, because my Mom is the woman she is my brother survived, and does until this day, and this is yet another gift she has given us, years in the making, one hard day after another.

Thank you, Mom.

St. Margaret of Castello

Saint Margaret of Castello, patron saint of children with disabilities, shown here as a fairy God-mother protecting and appreciating a small child who was born differently abled.

There is a news item on NPR today about some horrifying abuse occurring at a state institution in Texas:

Morning Edition, March 18, 2009 · At a state institution for people with mental retardation in Texas, six staff members have been charged with taking part in staging what have been called human cockfights, using residents with mental retardation. The accusations have raised questions about how workers trained and hired to care for some of the most vulnerable people in society could instead treat them with cruelty. Read the rest of this article:

My older brother, Wally, was diagnosed with autism when he was around 2 years old. The doctor recommended that my parents place him in an institution where he could get "professional" help, and focus their attention on my sister and I- the two "normal" children. This was in the late sixties, and a lot of parents were still choosing to institutionalize their children who had disabilities. My mom and dad decided that Wally would remain at home, and so he has until this very day. Even so I was exposed to the horrors of institutions at a very young age: Wally's day school, Wildwood, for a time was located at O.D.Heck Developmental Center. Being the youngest I went there with my mom to bring Wally to and from school and for meetings. I remember being horrified and frightened for my brother when we were shown a closet where kids having tantrums were put. We had a book with photographs of Willowbrook. I looked at it once as a child and I was just sick over it. The thing that haunted me the most was a made for TV movie- it may have been "Sonshine"- about a family like ours. The parents checked out an institution and the dad took a detour from the approved tour and found rooms full of children tied to chairs, just sitting neglected, because they were like my brother. I grew up fearing that if something happened to my parents my brother would end up in one of these horrible places. How are institutions different really from concentration camps, where a person is incarcerated and robbed of their human rights because they were born "different" and somehow unjustly deemed unacceptable by those in power?

Make no mistake-people who are "normal" cause pain and suffering for people with "disabilities", more than their actual "disability" ever has! I would love to see a class action lawsuit come out of this horror in Texas, along with criminal charges of course, and an amendment to the constitution to protect people with disabilities from the kind of "help" these prisons are offering!