This is my sister. Her name is Kristin, but we all call her Kristy, or even more often, by her nickname Kristy Bear. She is 30 years old, born August 30, 1984. In our thirty years together as sisters, I have never once had a conversation with my sister. We have never shared our clothes. We have never stayed up late into the night giggling over silly secrets. We have never gone to the movies together, gone shopping together, or done any of those other “sisterly” things. My sister is severely autistic.
My parents found out within days of her birth that something was wrong – it turns out my sister was born with a chromosome disorder called Turner’s Syndrome. You can look up for yourself all the problems Turner’s Syndrome can cause, but my sister had several of them: she had the classic physical features such as low hairline, a thick, webbed neck, ear abnormalities, and very puffy feet and hands. She was also born with a congenital kidney defect called “Horseshoe Kidneys”, caused by the Turner’s Syndrome. My sister underwent an extensive reconstructive surgery, as well as several hospitalizations in the early years of her life.
However, as she got older, my mother knew that something else was wrong. She was not affectionate, she did not make eye contact, she wasn’t talking, she seemed to be in her own world. There was just something… off. Remembering this was the mid-80’s, when very little was known about autism, my mother happened to catch a documentary on tv one day about Autism – and it clicked. She knew what was wrong, now. The diagnosis was confirmed soon after, when my sister was 3.
And here we are, 27 years later.
I was on an autism board the other day, and a woman made a comment about low-functioning autism. In her words, for those who have severe autism, their life is nothing but hell. She considers them destined to starve themselves to death and no one in their right mind would want to be around these autistic people. While, being a Christian, I won’t say exactly what I thought of her and her comment, I will say this: what a pathetically narrow-minded view of autism she has. Her comments, which were brought back to my mind by my experiences Friday night, made me want to share a story of low-functioning autism. I wanted to share just how wrong she is. Bare with me, this story is told through a sister’s eyes, so I may have things wrong here, dates may be off… but you’ll get the gist of it.
Probably many on the outside would look at my sister’s life and agree it has been hell. I mean, she was in diapers until the age of 8, she could barely talk outside of screaming. She could be very violent as a child, hurting herself – tapping her hands so hard she’d bruise them, chewing her knuckles till there was no skin left, pulling her hair out till she had bald patches all over her head, beating her head off the floor or wall. To say nothing of what she did to others when she was in meltdown mode. I watched her bite my step-mother so hard that she cut her and drew blood – and that was biting her through a sweatshirt and bra. Imagine the strength of that bite. I was on the receiving end of her fury a few times, and I was often scared of my own “little” sister.
I admit that I was embarrassed to go into public with her because of her extremely noticeable stims (repetitive behaviors), like flapping and rocking and random noises. Oh yeah, and the fact that she was so sensory-sensitive to dirt, getting wet etc… that she second she got anything on her, she would scream and would start removing her clothes. She would not (willingly) stop until she had stripped herself naked, no matter where we were.
And then along came a miracle drug called Melaril. It was a powerful anti-psychotic and what a difference it made in my sister. The self-injurious behavior improved. I know at some point, my mother was able to get her into a music/listening therapy program that really helped her speech. Now, granted, she still has minimal speech, but today at 30, if you say “Are you hungry” she can answer you, for example by saying, “I want bacon”. She can also randomly ask certain things like, “I want Pepsi, please”, or, “Going to see Grammie?” The majority of her speech is still echolalia, it’s very monotone, and stilted, but she is capable of making her wants known.
The drug made a world of difference. Don’t get me wrong, her stims were still very obvious, she was still minimally verbal, but the biggest difference was in her Obsessive-Compulsive behaviors, and violence. We were actually able to some things as a family, and I remember weekend camping trips with my mom. Granted, my sister normally would just walk in circles, tapping a belt, lost in her own world, but she was calm. And she loved being on the swings. I have memories of my sister being on the swings, smiling and laughing.
When she was a teenager my mom got her into a wonderful respite home, and her time was split between there and with my mother. They also got her into a work program with the SPCA. She (with the help of an aide) would walk the dogs. She loved it. My sister has always loved dogs. My mother once had a German Shepard, and Kristy loved to lay on her, with her head on her belly. As she got older, she eventually “graduated” high school, and moved into the respite home full time, coming home on weekends. They took her swimming and bowling – she loves to bowl! She moved to working at a hotel, delivering fresh towels to the rooms. She was being a productive member of society, contributing in a way that her limitations and abilities allowed. She had “friends”. She was no longer someone to be feared. While she did still occasionally have meltdowns, they were not nearly as common as when she was a child.
And while no, there was never any conversation with her, there were no un-prompted signs of affection like kisses or hugs… you knew she loved you, but the grins she would give you. She would look over at you and smile, at the sight of you. Also, in there, was a girl who loved to be a brat. I have memories of sitting with my sister on the couch. She would start rocking and get rocking too hard, so you’d have to say, “Kristy, stop rocking now, ” and she’d stop. And then a minute later, she would slyly look over at you, and start again. So you’d tell her again. She’d stop, wait, then slooooowly look over at you and give you this purely devilish grin, and start again. SHE WAS IN THERE – and with a sense of humor.
And then, came a huge blow – Melaril was taken off the market due to health risks. She was 21. And my sister was gone. The rages and severe obsessions came back. Her meltdowns were yet again so violent that police had to be called. The respite care home she was in could no longer keep her. She went back to my mother. They tried to get her on new anti-psychotics, but the withdrawal period from anti-psychotics is horrendous, and then the adaptation period to new ones can be equally as bad. She spent a total of over 10 months of her life living in the psychiatric ward, on three different occassions, drugged to the point of sitting, literally drooling. I could only bring myself to see her twice there. I hated it both times. That was not my sister. It was just a shell. I know my mother wished they could have left her on the Melaril. Yes, she may have died from a heart attack, but at least she would have been living. Those were horrific times for my mother.
Finally, the hospital kicked her out because they needed the bed, and they sent her to a nursing home. Yes, a nursing home, where old people go to die. She was drugged less, but barely. For those wondering why my mother didn’t keep her herself – because she couldn’t. She wasn’t capable of dealing with her rages, and besides – who was going to watch my sister, when my mother went to work, to earn the money necessary to support her? Kristy was an adult now – there were no more child disability credits coming in the mail.
But then, slowly things turned around. They finally got her medications figured out. She never returned to the active person she was, and in fact she put a lot of weight from the medications and the ensuing lack of energy, but she was also no longer a shell. They were able to move her out of the nursing home and found a good group home for her. She’s moved again since then, to a great group home only 20 minutes from me (she used to live almost 4 hours away). There, she has friends, and people who love her. They take her swimming, bowling and to other community events. She loves to be read to.
In the years since all of this mess with the meds happened, my mother finally turned her life-long passion of music into a career – and she is now a professional recording artist. My sister has always loved music – I have many memories of her walking in circles, while listening to music. As she walked, she would always tap on a belt or some other object, in perfect rhythm to the music. My sister loves to hear our mother perform, and the care home often takes her to my mother’s concerts when she’s in the area. She will sit there rocking back and forth, singing along, with a huge grin on her face.
Which brings me to last Friday night.
When my mother recorded her album, she co-wrote and recorded a song about autism. You may or may not have heard it, if not, it is called “I’m in Here”, and is on YouTube:
My mother was in town last Friday night, playing, so I went to watch. Originally the home was planning on bringing my sister, but she had been having a bad day, so they called my mom and said they were sorry, but they didn’t think it was best.
I’m also a singer, though I didn’t inherit even a fraction of my mother’s natural stage presence, and so that night, my mom called me up with her, and we sang “I’m in Here” together. Picture it: my mother singing the song she wrote for her autistic daughter, my sister; myself now a mother of my own (very high-functioning) autistic child. And then, part-way through the song… in walks my sister – the home brought her as a surprise. And the world stopped. My sister saw me there (she didn’t know I’d be there), and this huge grin filled her face at the sight of me, and she did her happy rock. And tears filled my eyes. Then my mom saw her, and cried watching her, during the song. Half the audience was crying. My mom got a standing ovation for the song.
The show carried on. I went to say hello to my sister. I took her hand and guided her through the crowd. I thought about how few times I’ve done that in my life, and how it felt like such a “normal” big-sister thing to do. She sat beside me for part of the set. She never hugged me. She never spoke to me – in words. But she would rock back and forth to the music, singing along, grinning. And every so often, she would stop rocking, and turn and look at me, and this big, silly grin would fill her face – telling me more than words ever could – that she loved me, and was happy I was there.
So please, don’t ever tell yourself, or anyone else, that a severely autistic child’s life is nothing but hell. Don’t believe, or propagate that lie, for one second. Yes, my sister has spent years of her life probably in what many would call a hell… but all it takes is one look at that smile of hers, to know that it’s been worth it. And when I see her smile, I don’t see the bad times, all I see is a glimpse of heaven.