I've been following the reviews of Andrew Solomon's new book, Far From the Tree: Parents, Children and the Search for Identity
Solomon writes about the families who care for kids with severe disabilities or with kids who are outliers in some way — kids who are the product of rape, kids who are gay, autistic kids, children with schizophrenia. He expected to find miserable people overwhelmed by the burden of caretaking. Instead, he found parents whose love seemed to have no bounds. The parents said that they would ease their child's suffering if they could, but they believe that the experience of raising a special kid made them better people.
I travel in those circles, because I have a son with a disability. I know those parents very well. Let me add some qualifications to Solomon's story.
There are indeed some amazing, beautiful people who love their severely disabled kids.
Every Wednesday, I take Ian to a special swim class at the Y. Ian is mixed in with kids who are rarely seen by the general public. There's one man-boy who is wheeled into the Y by his nurse and his mother. The man-boy must be in his twenties, because his hair is receding and his back is hairy, but it's hard to determine his actual age, because his growth has been stunted and he can't speak. He's lowered into the water and a volunteer attaches a floatation device to his waist. Then the volunteer pushes him back and forth across the pool for an hour. When the swim period is over, and the boy is hoisted out of the pool, his mother and his nurse coo over him. Their faces light up when they see him. Their love for this boy, which is so real and genuine, makes me tear up every time.
During that 45 minute swim session, I am surrounded by incredible people. They come from diverse backgrounds and I probably would never have come across them, if I didn't have a kid who was odd. In addition to the parents, there's the woman who runs the program. Coach Linda is tall and gangly. With her short cropped hair and track pants, she reminds me of the good twin of Sue Sylvester from Glee. She knows all the kids by name and shouts encouragement to them from edge of the pool.
Having a kid with a disability puts you on the outskirts of society. You are not part of the normal suburban parent community. The PTA plans events that your kid can't attend. Your kid isn't a part of the after-school sports scene or scouts or religious classes. You don't meet other parents at the bus stop, because your kid goes on the special yellow bus. I think that that marginalization makes you appreciate the few people that cross your path even more.
Other parents get caught up in competitive parenting circles. They actually care if their kid gets an A or an A- on a test. Parents of these special kids just want their kids to be happy.
Because Ian falls on the edge of disability, I see some not-so-beautiful special parents, too. This group desperately wants their kids to cross over to normal society. That desperation brings out some rather bad behavior.
And then there are the parents who get stalled out on the grieving stage and haven't made it to the acceptance stage. There's one dad that I talk to periodically who can't stop imagining what his child would be like if he didn't have autism. He corners me at birthday parties to tell me his woes.
I like to think that Steve and I are better people as a result of raising Ian. I'm not sure if that's true. I have a very flawed personality. But this experience has exposed me to the best of human nature and for that, I am grateful.
Apt. 11d 
Thanks for that. I’ve been looking forward to reading this book as well. (Put it on one of your lists so we can buy it through the link?)
One of my best friends has a child who spent the first year of life in the hospital having surgery after surgery after surgery. She will tell you that that year was a gift because it so radically altered everything she thought she believed about being a parent. The way she explains is that after you spend a year praying “Lord please just let him make it through the night” you tend to have a very different perspective on who your child is and what he’s on earth for and what you’re on earth for. But most of us don’t know anyone like that or anyone whose life is like that because, as you point out, people with special needs kids don’t tend to get included in stuff. (Here I have to tell you that the exception to that rule seems to be Suzuki violin in our area — My kids took violin lessons with a little girl who had just had a cochlear implant, and her parents wanted her to learn how to listen. They also took lessons with a girl with Down’s syndrome. The emphasis in the music studies where we studied was on experiencing the joy of music rather than racing through the books and competing to see who could finish them first.) However, we too can resonate with that sense that you describe of having been somehow isolated from the world of normal — my aspie kids with their sensory issues and slower physical development weren’t exactly welcome on the soccer field, as was I as their mom. (I went to one of those home parties the other evening where the hostess kept going on about how “these bags are really great for keeping all your sports equipment in” and I realized that none of my kids had any sports equipment. It was a strange feeling to be that different.)
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Reading stories like these give me anxiety attacks. I fear that I would be a “bad” special needs parent.
It is obviously not at all the same thing, but I do have a special needs sister with very severe disabilities. I am not her parent, but I am definitely not a good special needs sibling. We are not close. We have never fought, and are always friends, but we simply hardly have a relationship at all. We live in different states. We are friendly on holidays, but I don’t go out of my way to call her. When we do speak outside of holidays (every two or three months) the conversations are always awkward and uncomfortable. I do not try hard enough.
There has been a sort of Sword of Damocles “what if” in the background for years. “What if” the incredibly likely scenario comes to pass that my sister outlives both of my parents (who are 30+ years older than her). Will I become a “special needs parent” in my 50’s? Does she move up here? Do we use all of our inheritance on care for her to replace what my parents do? Or do I become more active? I don’t know. I do not think I am a “better person” for the experience. Thinking about it remind me that I am often not as good as I would like to be.
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“There has been a sort of Sword of Damocles “what if” in the background for years. “What if” the incredibly likely scenario comes to pass that my sister outlives both of my parents (who are 30+ years older than her).”
That’s not a “what if.” Actuarially, that’s a “when.”
There’s a brain-damaged, ADHD, PTSD kind-of-recovering mentally ill addict younger sibling who will (unless we die or she dies first) eventually pass into our charge. She lives independently and is both standoffish and high-maintenance, which sounds impossible as a combination, but is actually the case. Her parents are pretty much tied down by the demands of her regularly recurring crises.
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Sorry–I got the word order wrong.
“mentally ill kind-of-recovering addict”
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Regarding the probability that one would be a “bad special needs parent” — I think there are bad parents. But, I think bad parents are usually bad parents. There are bad parents to normally functioning children, to prodigies, to delightful children as well. Think of the cases we hear about (usually the movie stars, who, honestly, are/were amazing children, most of them, gifted and brilliant), but there are also plenty of cases we don’t hear about (college confidential inevitably has posts about parents who have kids who are doing everything right, but who believe their parents don’t love them).
Good parents love their children and accept them for who they are. Parents can fail at this basic requirement with any kid. And, care breeds love, for the ordinary parent. It’s a egocentric fallacy, to assume you love your children because they are amazing. The fact that we haven’t been tested doesn’t mean we’d fail.
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That parent of the child with autism who corners you to talk about how great his child would be without the autism, well, he’s also, I think, the one who would be cornering you to talk about how his kid would be destined for the major leagues (if, the kid just tried hard enough, they had more money for training, if the coach would treat him right) and spends the game yelling at him from the sidelines.
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Our situation has an additional cherry on the top–the troubled sibling’s parents refuse to make a will.
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I’m reading a Sayer’s mystery where the refusal to make a will also caused problems. In this case, it was because of a previously unknown heir.
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There’s no shame in hoping that you never have to take on vast quanity of caregiving responsibilities. It’s really a drag. I know people who can’t travel with their children, can’t go to restaurants, can’t take properly care for siblings, can’t work, and have a very low quality of life based on most metrics. There clearly needs to be more gov’t help for those people, but that’s another story.
The one silver lining in the burden of caretaking is being freed from society expectations for perfection. And the ability to recognize beauty in imperfection.
I think that few people really escape the caregiving all together. Lots of people, even with normal kids, have to end up caring for elderly parents. Unless you have buckets of money and can outsource everything to professional staff, extreme caregiving is in everyone’s life at some point.
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I am not her parent, but I am definitely not a good special needs sibling.
I have a cousin, now in her 20’s, with Smith Magenis whose syndrome was an enormous burden on her one sibling. She is able to talk and minimally function out in the world while also having absolutely intense outbursts involving self-injurious behavior. Small things will set her off and her brother was expected from a young age to act a certain way so as not to provoke her. It took a real toll on him after so many years. I don’t think his parents did anything wrong in expecting this of him, they were dealing with it the best they could.
I feel certain that he does not think the experience of having her as a sibling has made him a better person. He is a fine person who loves his sister but I know he would describe her impact on his life as overwhelmingly negative.
As for the book, I haven’t read it but I hope it presents the complexity of emotions that accompanies caring for someone with a disability. It can life-affirming while also being unbelievably stressful and hard.
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I read a good blog post recently about the need to embrace both the joy and anger when confronting tragedy (in whatever sense):
The author is the mother of a child with autism, and also lived in France for a long time. She writes of the American desire to find a happy ending in everything as compared to the French cynicism.
A relevant quote: “To completely mangle that Oscar Wilde quote, don’t tell me to look at the stars unless you’re willing to lie down in the gutter with me. But if you are – if you can deal with the reality of a life without a true ‘appy hend – well then, let us raise our glasses together, gaze at the heavens in delight, and hope at least to hend ‘appy.” The whole post is worth reading.
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He is a fine person who loves his sister but I know he would describe her impact on his life as overwhelmingly negative.
That’s the thing. I didn’t really find it a negative experience. It really wasn’t much of an experience at all. My parents sheltered me from the hardest parts of it. Beyond that, we didn’t have any common interests. Because of her cognitive level, she enjoyed “simple” entertainments that bored the crap out of me. She was actually really good recently about visiting our grandmother in the nursing home when she was bed bound. They would sit around for hours watching “Dancing With The Stars” and other reality shows on TV. My visits tended to top out at 30 minutes.
My sister is a good person, and I love her, but we don’t have a relationship. And eventually I am going to be her trustee from 100+ miles away.
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I don’t have a kid with a disability, but I’m starting to understand what it might be like. As I believe I’ve said here before, my son suffers from depression. He had a recent stay in an inpatient hospital. We find ourselves having to do some of the same things I know you’ve struggled with for a long time: working with the school, dealing with medication, appointments with multiple doctors, dealing with insurance, figuring out what to do with him at home. I like the idea if thinking about the intense care we need to do as a gift. I certainly know my son better than I might if he were a typical teenager. And most of the other crap in my life seems tiny in comparison. It’s hard, though, to be around the competitive parents who talk about grades and elite schools, etc. I think I should hang out more with your group of parents. For both my kids, I just want them to be happy. Who cares what their grades are.
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If you haven’t seen the show “Parenthood,” I would highly recommend it. A major plot line is the main character’s grade school age son is diagnosed with Asperger’s, and how the family struggles to cope.
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I have nightmares about how hard it’s going to be on our girls when we die. Eldest will inherit some responsibility for Autistic Youngest. We just hope to make her as independent as possible so this isn’t a tremendous burden.
This is also why I’ve worked so hard to support Eldest as she seeks to go out of town for university. Colleagues think I’m crazy since tuition here is free but this might be Eldest’s best chance to really see and experience a lot more of the world, to find her own interests and joys without always having to accommodate her little sister.
On a smaller scale, I’m cheesed beyond belief that the bus system perkily phoned me up today to announce that Autistic Youngest would be on a new bus after school that should get her home at 2:35 instead of 2:55. Yay? Now there’s no way that her older sister can ‘beat’ her home from school if both her father and I are at work. *sigh*
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“The one silver lining in the burden of caretaking is being freed from society expectations for perfection. And the ability to recognize beauty in imperfection.”
Yes – this, I think, is the gift autism gave us. I can imagine myself, in another life, being the monstrous and competitive parent and I shudder.
Most of my best friends made in adulthood are special needs parents – or have some other experience that gives them a mission beyond perfection. That’s another gift – friends who don’t criticize or judge my imperfections.
But I’d give it all up if my beautiful boy would never experience social rejection.
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