If you are the mother of a child with autism, the news lately is a little tough to hear. I don't want to and won't comment on the recent horrible happenings involving mothers of autistic children, because I am not in a position to do so. And that is my point here. Mothers of children with autism are not a homogeneous group. We are not a single type. We are not chosen. We share something very major in our lives---we are the mothers (and fathers, but society and the news seems to focus on mothers) of a child with autism. But aside from that, we are all very different people. We react differently to many things in our life, including the stresses of raising our children.
When I read about the mothers that break, I feel like I am supposed to have some inside insight into them. I don't, really. It is like when I read about any crime or horrible event. I figure there are so many factors involved that I simply can't know or understand that I really don't know what happened.
Right around the time Janey was diagnosed, I was on the jury for a high profile murder trial, of a foster mother whose foster child was killed. We eventually found her guilty of manslaughter. I can tell you that after hearing all the evidence, and after much, much thoughtful deliberation, the amazing people on that jury felt for everyone involved---most of all the child, of course, but also the foster mother. She was not a demon. She made extremely poor decisions, and she paid for them. But the experience left me realizing that we usually have no idea what life others live.
The only autism mother I can truly speak for is myself. And I can only speak for myself at the moment in time I'm in. I know there have been moments of despair, and my thoughts at those moments always went to escape---my own escape. I thought of getting in the car and driving away and never coming back. I thought of escaping into death, my own death. Those thoughts were fairly rare, but they happened. What helped me out of those moments in the abyss---knowing I had a family who loved me, knowing that there is always a hope for a better tomorrow, and often---Janey herself. That is the biggest one---how even after the toughest times, my delight in her can make me happy like nothing else.
Autism mothers aren't chosen. They are parents. The idea that somehow they are special, different, miracle workers---those are dangerous ideas. They are dangerous because of the expectations they create. IT IS NOT OUR JOB TO FIX OUR CHILDREN. That thought is what I think causes more despair among parents of children like Janey than any other. We all have read about amazingly devoted parents who "cure" their kids. Maybe this has happened, once or twice in history. But most of the time, the children that get "cured" would have done so anyway. I truly believe this, with all my heart. I don't talk about it a lot, because it is not my story to tell, but my older son could be the subject of one of those "cured" fables. I didn't cure him. I am not going to cure Janey. It IS my job to do what is the job of any parent---to give her a good life as much as I can, to love her and cherish her, to feed her and clothe her and see that she gets an education.
When the world understands that autism mothers are not a special, exalted breed, but just parents who have been dealt a more challenging hand than most, I think society will be more inclined to help us. When the world understands that autism is not some mystical, mysterious state of being, but is more like diabetes or cystic fibrosis or other childhood conditions---not the fault of a parent or a child, not something a parent or a child can cure, not something that makes a parent or child better or worse, but a condition that requires help and services to deal with, I hope that help will be provided. It will not prevent all tragedies, even then, and that is because every person, every child, every situation is different. Please remember that when you hear the news.
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label delight. Show all posts
Showing posts with label delight. Show all posts
Thursday, November 6, 2014
Thursday, October 9, 2014
Beyond Acceptance
Autism acceptance is one of those catch phrases that takes on a meaning of its own, but if you ignore anything that has been added in meaning to the phrase, of course I am in favor of autism acceptance. The opposite of acceptance is rejection, and I can't reject autism without in essence rejecting people with autism, because autism doesn't exist outside of the people WITH autism. So yes, I certainly believe in autism acceptance.
It gets a little more complicated than that, of course. As it often seems to come back to lately, there's a big gap here between low and high functioning autism. Janey isn't going to much affected by job discrimination---I very much doubt she'll ever hold a job. She isn't going to ever most likely be out in public without someone taking care of her. She hasn't yet learned to use a communication device consistently or talk with much meaning, so despite how much we do listen to what she says, often she can't speak for herself. I accept all these things about Janey, but I do want to work on making her life easier by changing or adjusting some of them. How does that work into it? Am I not being accepting of her when I try to get her to say what is bothering her instead of crying? Is trying hard to toilet train her not accepting her? When I insist she keep herself clothed, is that unaccepting?
And what about going beyond acceptance? What if I sometimes DELIGHT in Janey's autism, not just accept it? Strangely, it feels almost wrong to think of delighting in something Janey does because of her autism. And that is odd, because is it okay to ACCEPT her but not to delight in her?
Here's a few examples from last night. Tony got home from work and Janey was thrilled to see him, as she almost always is. She was so thrilled she wanted to hang off him for half an hour, hugging him, asking him to pick her up, wanting to hold hands with him and so on. She was being very sweet, and Tony and I noted to each other that most 10 year olds are beyond being that excited to see their parents, and how sometimes it's a great contrast to how the boys react to us coming home. Later, Tony needed to drive me to an event at Freddy's school. We told Janey she was going to go for a ride in the car, and from the look on her face, you would have thought we'd said we were giving her the world's greatest treat. She didn't ask, as the boys would have, if we were going to get something to eat, if she was going to get to get out of the car, when we would be back, why she had to go---none of that. She was just excited to be going for a ride with Mama and Daddy. On the way home, Tony told me she kept saying "Mississippi!" as if she'd just heard the word for the first time, laughing her head off at how it sounded every time.
Thinking about Janey last night, we realized we felt delight in how she was acting, delight in things she did that all had a connection to her autism. Typical 10 year olds would not probably do those things. They were more two year old type behaviors. But we loved them. Janey's good moods are a treasure, especially coming off a few tough weeks. And her behavior was made more delightful BY the autism, not DESPITE it.
My point here is that acceptance is a pretty lukewarm word. I certainly accept Janey, but my relationship with her autism is more complicated than that. Sometimes, I feel autism despair. Sometimes, I feel autism delight. Sometimes, I want to change the parts of autism that make life hard for Janey, but some parts I would be very sad to see go---some parts of her that relate to her autism are wonderful. Catch phrases don't really cut it when describing how I feel about autism.
It gets a little more complicated than that, of course. As it often seems to come back to lately, there's a big gap here between low and high functioning autism. Janey isn't going to much affected by job discrimination---I very much doubt she'll ever hold a job. She isn't going to ever most likely be out in public without someone taking care of her. She hasn't yet learned to use a communication device consistently or talk with much meaning, so despite how much we do listen to what she says, often she can't speak for herself. I accept all these things about Janey, but I do want to work on making her life easier by changing or adjusting some of them. How does that work into it? Am I not being accepting of her when I try to get her to say what is bothering her instead of crying? Is trying hard to toilet train her not accepting her? When I insist she keep herself clothed, is that unaccepting?
And what about going beyond acceptance? What if I sometimes DELIGHT in Janey's autism, not just accept it? Strangely, it feels almost wrong to think of delighting in something Janey does because of her autism. And that is odd, because is it okay to ACCEPT her but not to delight in her?
Here's a few examples from last night. Tony got home from work and Janey was thrilled to see him, as she almost always is. She was so thrilled she wanted to hang off him for half an hour, hugging him, asking him to pick her up, wanting to hold hands with him and so on. She was being very sweet, and Tony and I noted to each other that most 10 year olds are beyond being that excited to see their parents, and how sometimes it's a great contrast to how the boys react to us coming home. Later, Tony needed to drive me to an event at Freddy's school. We told Janey she was going to go for a ride in the car, and from the look on her face, you would have thought we'd said we were giving her the world's greatest treat. She didn't ask, as the boys would have, if we were going to get something to eat, if she was going to get to get out of the car, when we would be back, why she had to go---none of that. She was just excited to be going for a ride with Mama and Daddy. On the way home, Tony told me she kept saying "Mississippi!" as if she'd just heard the word for the first time, laughing her head off at how it sounded every time.
Thinking about Janey last night, we realized we felt delight in how she was acting, delight in things she did that all had a connection to her autism. Typical 10 year olds would not probably do those things. They were more two year old type behaviors. But we loved them. Janey's good moods are a treasure, especially coming off a few tough weeks. And her behavior was made more delightful BY the autism, not DESPITE it.
My point here is that acceptance is a pretty lukewarm word. I certainly accept Janey, but my relationship with her autism is more complicated than that. Sometimes, I feel autism despair. Sometimes, I feel autism delight. Sometimes, I want to change the parts of autism that make life hard for Janey, but some parts I would be very sad to see go---some parts of her that relate to her autism are wonderful. Catch phrases don't really cut it when describing how I feel about autism.
Wednesday, June 12, 2013
When people can't see the delight
Janey had a physical today. I like my pediatrician a lot. He has been very good to my family over the years. He saw each child on the very day they were born, and it was exciting today to have him see William as an adult, ready to go to college---great to have him see how far William has come, and to have him see the fine young man Freddy is too. But something bothered me a little about the visit. I couldn't quite put my finger on it at first, but I think I have it now. I don't think he can see the part of Janey that is a delight.
To be fair, Janey generally screams all through doctor's visits. She is very healthy, so he rarely sees her except once a year, and at the time, we are usually seeking advice on serious matters, thinking about her future, worrying about things like her biting herself or if she will ever be toilet trained fully or what puberty will be like. He doesn't often get to see Janey happy. But today, although Janey did scream a fair amount, she also cheered up at one point and smiled at him so sweetly, and then suddenly went over to him and said his name "Dr. ------!" Tony and I were excited. And he was kind to her, but he didn't seem charmed. When I talked to him alone, once Janey was out of the room, he was very serious, and talked about how we should start thinking about quality of life, and taking note of how it is every six months or so, and deciding if it's getting better or worse---what the trends are. I know he worries about us. He said as much, and I think I saw tears in his eyes. He's a very kind person, and he cares for us. And on paper, and from her brief visits, I can see there isn't a lot to delight in with Janey. She is probably one of the most disabled patients he has. She is also probably behaviorily one of the most difficult. There have not been that many moments of triumph with her. She hasn't made exciting huge jumps. She is not a classic success story.
But she is so often, in so many ways, a delight. And many people do see that. Her teachers, her aides, the staff at the school, her brothers at times, Tony and myself often---most people who spend any amount of time with Janey have seen what a delight she can sometimes be. Not always, not even mostly, but often. She can make us happier than almost anyone when she is happy. She is funny, she is spontaneous, she is often a blast in her own way. She can make us despair, sure. Often she does. But sometimes she makes us laugh until we cry too. After the appointment today, we went to get some food. Tony took her to Burger King, and I went with the boys to a burrito place. She came over with Tony afterward, and saw a big bunch of high chairs, and said "I want the high end chair!" We laughed and said "You are too big for the high chair" and she said, for about 20 minutes "You're too big for the high end chair!", like she was discussing finer furniture. She knew we found her funny, and she was playing it for laughs. Both the boys were in, well, teenage moods, and it was one of those times that we appreciated what Janey is most.
I think there are some people that, although they might care very much for Janey, that they may want the best for her, can't completely get past the part of her life that is a tragedy. And it partly is. She has made our lives often very, very, very tough. She is not happy much of the time. She will almost certainly never live on her own, never hold a job, never be able to be unsupervised. She is functionally severely intellectually disabled---although her mind might hold much knowledge, there isn't a way to access that knowledge usefully. But she is also a little girl, a beautiful, funny, sweet little character that we love extremely much, and I want others to see that. I know not every can, or will. To be honest, I don't know if I would have been able to, if she were the child of a friend and not my own. But I've learned that a child like Janey is not a tragedy. She is a person, a child, my child I love.
Here's a picture I took while in the city for the appointment today---Janey at the side of the Hancock Building, delighting in seeing the other Janey, delighting in seeing herself. The smile in the picture says what I want to say more than my words do.
To be fair, Janey generally screams all through doctor's visits. She is very healthy, so he rarely sees her except once a year, and at the time, we are usually seeking advice on serious matters, thinking about her future, worrying about things like her biting herself or if she will ever be toilet trained fully or what puberty will be like. He doesn't often get to see Janey happy. But today, although Janey did scream a fair amount, she also cheered up at one point and smiled at him so sweetly, and then suddenly went over to him and said his name "Dr. ------!" Tony and I were excited. And he was kind to her, but he didn't seem charmed. When I talked to him alone, once Janey was out of the room, he was very serious, and talked about how we should start thinking about quality of life, and taking note of how it is every six months or so, and deciding if it's getting better or worse---what the trends are. I know he worries about us. He said as much, and I think I saw tears in his eyes. He's a very kind person, and he cares for us. And on paper, and from her brief visits, I can see there isn't a lot to delight in with Janey. She is probably one of the most disabled patients he has. She is also probably behaviorily one of the most difficult. There have not been that many moments of triumph with her. She hasn't made exciting huge jumps. She is not a classic success story.
But she is so often, in so many ways, a delight. And many people do see that. Her teachers, her aides, the staff at the school, her brothers at times, Tony and myself often---most people who spend any amount of time with Janey have seen what a delight she can sometimes be. Not always, not even mostly, but often. She can make us happier than almost anyone when she is happy. She is funny, she is spontaneous, she is often a blast in her own way. She can make us despair, sure. Often she does. But sometimes she makes us laugh until we cry too. After the appointment today, we went to get some food. Tony took her to Burger King, and I went with the boys to a burrito place. She came over with Tony afterward, and saw a big bunch of high chairs, and said "I want the high end chair!" We laughed and said "You are too big for the high chair" and she said, for about 20 minutes "You're too big for the high end chair!", like she was discussing finer furniture. She knew we found her funny, and she was playing it for laughs. Both the boys were in, well, teenage moods, and it was one of those times that we appreciated what Janey is most.
I think there are some people that, although they might care very much for Janey, that they may want the best for her, can't completely get past the part of her life that is a tragedy. And it partly is. She has made our lives often very, very, very tough. She is not happy much of the time. She will almost certainly never live on her own, never hold a job, never be able to be unsupervised. She is functionally severely intellectually disabled---although her mind might hold much knowledge, there isn't a way to access that knowledge usefully. But she is also a little girl, a beautiful, funny, sweet little character that we love extremely much, and I want others to see that. I know not every can, or will. To be honest, I don't know if I would have been able to, if she were the child of a friend and not my own. But I've learned that a child like Janey is not a tragedy. She is a person, a child, my child I love.
Here's a picture I took while in the city for the appointment today---Janey at the side of the Hancock Building, delighting in seeing the other Janey, delighting in seeing herself. The smile in the picture says what I want to say more than my words do.
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