Looking back

Ward at a state institution circa 1960

When I was growing up in the 1950s and 1960s, there were no special education classes in our public schools.  People with disabilities were, for the most part, invisible.  I remember one student in my elementary who had had polio and walked with leg braces and crutches.  I remember one student in junior high who was blind and had a guide dog, but I don't know what special services he may have had.  I only remember seeing three people with developmental disabilities when I was growing up.  There were a brother and sister who could frequently be seen walking to Oakland Park to go fishing at the small lake.  (I later worked with the sister when she was transitioning out of a state school.)  The other person with developmental disabilities I was aware of was a girl who went through high school with us.  I suppose her parents must have insisted that she be in school; she went to  regular classes and the only thing she could do was write a few letters of her name on a piece of paper and turn it in.  I don't think I ever heard her speak.

Where were all those kids and adults with developmental disabilities?  I occasionally heard adults talking in hushed voices about someone who had a son or daughter "with the mind of a 2 year old."  But these people were well-hidden.  At that time, most parents were advised by their family doctors to place their delayed children in state institutions, and since there were almost no services in the community, most parents felt they had no choice but to follow that advice.

In 1974, fresh out of college with a degree in history and no marketable skills, in the midst of a recession, I got a job as an attendant at the Denton State School.  With my vast experience of having seen all of three people in my life with developmental delay, I jumped in with both feet.  I loved the kids in my charge, about 15 boys, ages 6-13.  I taught them self-help skills, sang songs to them, played with them.  I knew their little idiosyncrasies and what would make them laugh.  Back then, state institutions were very, well, institutional.  All the residents of the dorm slept in one large room with several rows of metal beds.  The day room was bare except for hard benches along the walls, with a TV on a bracket up high on one wall.  The bathroom was a large communal bathroom, with a row of toilets, a row of sinks, a raised tub, and a shower.  The kids whose parents still came to visit them wore clothes their parents provided.  The others wore clothes that were sewn by prisoners in state prisons; the outfits bore a striking resemblance to prison uniforms, in kids' sizes.  I sometimes bought regular clothes for some of those kids, and my dear mother sewed many lovely dresses for the girls on the neighboring dorm.  As much as the other staff and I tried, it was still an institution.

Because of this experience, I am deeply affected when I see folks with developmental disabilities out and about in our communities today.  When I see them out eating or shopping with their families, watch them play basketball or run track, see them pursuing their interests like art or dancing, see them working at the grocery store, my heart soars!  It is so moving to me, to think what a fundamental change has occurred in my lifetime.

Define "normal"

A few years ago, I was considering moving Tevis out of the group home and back home with us. Over the years, his explosive, aggressive behavior had decreased, and I thought that it might work. When I had a meeting with the owner of the group home company and some other staff people, I was taken aback at their negative reaction to the idea. One of them said, "It's not normal for someone Tevis' age to move back home with his parents. People his age are leaving home, not moving back."

I've thought a lot about that statement since then, and especially since Tevis moved with us to Saint Louis. What exactly is "normal?" When someone has significant disabilities, why single out one facet of a normal life (moving out of the family home) and use that as the standard of what is normal? In doing so, many other aspects of a normal life are sacrificed. What is normal about being "cared for" (I use the term loosely) by an ever-changing staff, on three shifts, weekday and weekend, with a very high turnover rate? What is normal about having to worry if the next staff person will be fired and/or arrested for assaulting a resident? What is normal about spending most of your time shut in your room, watching TV, sleeping, and, well, let's say, entertaining yourself? What is normal about being unable to help yourself to a snack or go outside by yourself?

So, according to those folks, Tevis has regressed by moving back to his parent's home. But by every other standard his life is now much more normal. He spends his days in a variety of activities: drawing, taking pictures with my old digital camera, watching a little TV, playing his electronic Leapster games, and working on my laptop. He fixes his own breakfast, lunch, and snacks, does his own laundry without being told, and takes the trash out to the dumpster. He goes to the grocery store and library, and plays basketball with The ARC on Saturdays. He checks his blood sugar twice a day and takes his own medication. He can cook a grilled cheese sandwich, and he recently bought a blender and is now the "Smoothie King."

Recently I've been taking an online course on psychosocial rehabilitation. It's defined as providing the skills and supports to enable a person to live in their environment of choice. "The environment of choice" is the key. At Thanksgiving dinner, my son Jesse was asking everyone what they were thankful for. Without hesitation, Tevis said, "I'm thankful I don't live in the group home any more." Enough said.

Introduction, part two

And, continuing the introductions:

Gabriel, about to turn 22 at the end of this month, came to me at the age of 5 months...the only one of my children who came to me as an infant. So, in my mind, he's always been my "baby." His birthmother was schizophrenic, so delusional that she sometimes thought she was Tina Turner, sometimes a white woman from California. She did not realize she was pregnant until she was about 8 months along, so she had still been getting injections of a powerful antipsychotic medication during the pregnancy. Gabriel appeared normal at birth, but at the age of 1 month became jittery and developed high muscle tone. Doctors suspected seizures and cerebral palsy. Over time, both diagnoses were ruled out, but they were followed by many more. As a toddler, he had speech and language delays. In elementary school, he had successive diagnoses of ADHD, obsessive compulsive disorder, depression, and Tourettes syndrome. But he was a charming, goofy kid...one speech therapist who evaluated him wrote "too cute!!!" in her observation notes. Then things got more complicated when he was in middle school. At the beginning of summer after 6th grade, I gradually came to realize that Gabriel had virtually stopped eating and was exercising for hours. He soon started to look shockingly thin. The pediatrician took a wait and see approach for a month, while Gabriel's weight continued to plummet. By the time he was admitted to an eating disorder program at a children's hospital in Dallas, he weighed 69 pounds...he'd lost about 30 pounds in a month. He was hospitalized twice, for a total of 5 months, that year. It was during his second hospitalization that the doctors diagnosed him as psychotic. But during the next 5 years, his psychosis was characterized by some skewed thinking and poor motivation. Then, in July 2006, over a weekend, he became somewhat moody and obsessive about certain thoughts. One evening, as I was walking through the den, he told me that I needed to put some curtains in the back windows, because someone was trying to kill him. When I pressed him to elaborate, he clammed up, saying, "I've said too much already...they'll kill me for sure now." He would say no more. I was unsettled, but we don't live in the best neighborhood, and I thought it was conceivable that some punk had made an idle threat. Later he came to my room, asking about police protection, whispering, closing the A/C vent. He said the people were trying to kill him because of something he had told me and Marcus at dinner a couple of nights earlier. But how would they know he had told us, I asked. He looked at me incredulously. "You don't know???? The police are in the room upstairs, listening to everything we say!" I realized that he had had a psychotic, paranoid break. Luckily I was able to convince him to go to the hospital. Incredibly, they didn't even want to keep him there and were going to just send him home. I convinced them to keep him a few hours for observation...a "few hours" turned into 7 months, as his condition quickly deteriorated and he was committed to the state hospital. I was shaken to my core. For months, he was unable to understand the simplest bit of conversation, he was so absorbed in his hallucinations. He moved unseen objects and talked with unseen people. He's been home for a year and does OK...considering. Schizophrenia has been worse than I ever expected and I am often disheartened at his present condition and fearful of his future.

Tevis, 18, came to us at the age of 16 months. Like Jesse, he had been diagnosed as having cerebral palsy and developmental delays. I have to admit, I thought that he might overcome his delays as Jesse had. But he didn't. He is moderately retarded, hyperactive, and has had severe behavior problems. He has to be supervised every waking minute, and actually during the night as well, as he wanders and gets into EVERYTHING while everyone is asleep. I decided to place him in a group home several years ago, when the school started calling me frequently to tell me to come pick him up as they couldn't handle him. I'd been through that with Marcus and knew that it was almost impossible to hold down a job under those circumstances. I wish I could manage Tevis at home, but it's not possible. He comes home several weekends a month. When he's not acting out, he's SO sweet, loves to help, and comes out with some really funny comments. After 7 years on a waiting list, he finally got on a state program that pays for a higher quality group home with only 3 residents. Tomorrow he's going with other clients on a cruise to Cozymel!

That wraps up the introductions to the kids who remain part of my life. In my next post, I'll introduce the rest of my kids...