There is a small cottage industry of academics and writer-types penning memoirs about their disabled kids. I took two stabs at writing a book about our story. I sent a proposal and a sample chapter to an agent last year. She said that she liked my writing and my background. She would happily look at anything else I wanted to write, but that the market for disability books was swamped.
All parents, at least in the beginning, are completely out of their minds. They expect that their drooling bundles of joy are the smartest, coolest humans on the planet. High achiever parents, like academics and writers, have even more irrational dreams for their kids. I wrote a bit about that in the chapter that I wrote last year.
A sample:
All parents believe that their baby will grow into a Valedictorian, a genius, a history-changer. He’s also a future major league ball player, a music prodigy, and a damn-good chef. There must be some Darwinian thing here, some survival mechanism hard-wired in our brains, because these delusions of the genius child are so universal. You’ll never meet a parent of a toddler who says, “yes, he’ll make a great middle manager of a tire factory some day and play in a weekend softball league.” Nope, they’re all Olympians and Nobel Prize winners.
We were no different from other parents. Perhaps we were even worse, because we both had recently finished PhD programs. All recent PhDs are arrogant assholes, and my poor children had two of them as parents. I may have even once looked on the Internet for research on the IQs of children of PhD parents. I am not admitting anything, just saying that it “might” have happened. I may have even picked a name for my son that had a Supreme Court justice sort of feel to it. Again, admitting nothing.
All parents have to undergo some grieving process, when the genius delusion wears off by in middle school years, and the kid’s average-ness is apparent to everyone. Average-ness is not a bad thing, but it’s not what we planned for. Whether it’s Darwinian wiring or socialization in a world that worships greatness, all parents believe in the perfection of their children.
Special ed-parents have to realize that their kids aren’t geniuses much earlier than other parents. In fact, they might have to learn that their kid may never reach average with the middle level management job and a weekend softball league. They might have to grapple with the fact that their kid can’t attend the neighborhood kindergarten class with all the other average kids. This is a bitter pill to swallow, when other parents are still in the bliss of the genius delusion.
As your child begins the therapy and enrichment rat-race, you’ll start to get a glimpse of the life-time of hard work that you’ll child have to deal with. They will have to work harder than other kids to learn how to hold a pencil or talk or hop on one foot. They will have to study twice as hard for a math test. They will not be invited to birthday parties or may be bullied. Your child will have a harder life than other kids, and this will make you grieve.
I loved every minute of my oldest son’s life with summer camps, school plays, and trick or treating with friends. I am rather sad that I didn’t get a second shot at all that with my camera ready and a goofy grin on my face. I’m sad that my younger son doesn’t get to experience those super fun times in life.
For a while, you’ll forget that your child is different, and then you’ll meet another child who is the same age, and you’ll remember how far behind your kid is. The differences between the children will be a sharp stab in the stomach.
Obama walked on the stage after he won the 2008 election flanked by white columns. After he gave his speech, his wife and kids joined them on stage. Michelle was wearing a red dress with a weird black X in the front. I never liked that dress. His two girls wearing pretty little frocks hugged him and held his hand. They smiled and waved at the audience. They were well behaved and sweet. And that happy scene made me sad, because my youngest child who was Malia’s age could never join me on a stage, if I became president.
Special ed parents don’t experience just one blow of bad news, when they first get a diagnosis. There will be smaller shock waves that happen later. Maybe the child will be kicked out of a school or ridiculed by peers. The kid might not experience various rites of passage that other kids experience. They might not get Bar Mitzvah-ed or go to their Junior Prom. But the shockwaves of pain are easier to deal with, after we learn how to cope with adversity.
You will grieve not only the fact that your is child is not a genius, but you’ll also grieve the loss of parenting experiences. Many people expect to become the PTA president and the boy scout leader. Perhaps their parents were pillars of the community, and they expect to continue the tradition. This is the life that they planned on having. If your child can’t focus on the baseball, then you’re aren’t going to coach the Little League. If your child has to attend a special school, then you aren’t going to be the PTA president. You’re out of a job.
It’s definitely easier to accept the fact that your kid doesn’t fall within a bell curve, if your identity isn’t caught up with being normal. If you long to be the SUV driving mom with the honor roll stickers on the bumper, then your child’s dyslexia will be a bitter pill to swallow.
So, there are many levels of the grief that a special ed parent experience. There is the understandable sadness that their child may have have to work twice as hard as other children. There is the grief born out of lost dreams. There is entitlement grief comes from the feeling that you worked hard and you were promised a certain kind of life and your child’s disability stole that from you.
We experienced all the different shades of grief from understandable to selfish. We grieved over the intense therapy that our two year old endured. We grieved over the broken dreams. We compared our child to other kids and grieved. We tried to delay grief with denial. We stamped our feet and cursed the Gods for giving us a heavier burden than others.
All that grief was self-destructive and a complete waste of time.
The grief process is the first hurdle when raising a special needs kid. Some parents never get over it and continually mourn the mirror child. The child in the alternate universe who wasn’t cursed with the disability. When I see these parents at activities and at school events, I make a wide circle around them. I feel sorry for them, but I can’t let their sadness make me sad. This chapter is about acknowledging the grief and then getting over it.
Apt. 11d 
You *are* a good writer. I hope you find the book in you that the publishers will buy!
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Concur. What book do *you* want to read, Laura? Write that book.
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This is really good writing. Maybe a novel would go better with publishers.
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Stupid browser memory.
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This is the book I went looking for and couldn’t find when my child was diagnosed with Asperger’s. I felt like such a shitty person because I was feeling aggrieved for MYSELF and not only for my child. Lots of books about how to help your child, and how to be a BETTER mother, to work harder, to find more activities and therapies, etc. if there was any advice for the parents of the recently diagnosed, it was really generic — take care of yourself, get enough sleep, exercise, take a soothing bath. I found absolutely NOTHING on the psychology of the uber-mom who was having a hard time adjusting to reality.
I felt like a bad mother because of course I was supposed to believe all that “I don’t care if it’s a boy or a girl as long as it’s healthy” stuff. My kid wasn’t in a wheelchair, wasn’t dying. The only thing I found was that damned poem about going to Holland. I would have LOVED to have a book like this to read.
What you have written here really resonated with me in terms of describing what it felt like to have the kid who couldn’t get up with the rest of the Sunday school class to sing the song when he was four, who couldn’t handle being in the nativity play, who hated birthday parties (which was really hard for me because I was so LONELY and really craved the time with the other mothers), the feeling of loss at never getting to be a PTA president. (I actually wrote a novel about the subject, which was also not published — At one point I made a crack about how nobody wants to buy “sensory issues Barbie ” — which only comes with one outfit, a soft velour sweatsuit, which is then worn to every event, including a wedding, a formal party, etc. Sensory issues Barbie stands out a lot by not fitting in. As does her Mom.)
Honestly, it’s been even harder for my husband — who mourned the scouts experience, etc. He is actually having a much harder time than I am with the fact that we have never sat in the stands at a high school football game on a Friday night cheering on a child on the team or in the band. High school is over for one of our kids and it didn’t include a prom, a ring dance, or any of those mile stones. It still feels like we’ve been a bit cheated. We have gotten over it, and we’re not “those people” — they’re all over at Kumon harassing their dyslexic child with math worksheets, at least in our area.
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I hadn’t pulled up that old draft in about a year. Got a little upset again and had to take a breather. Now, I’m back.
We had a tough time for a couple of years, because of the grief. Also, Ian was a miserable character for two years, because he couldn’t talk and we hadn’t figured out the sensitivity problem. (Now, he walks around with a smile on his face all the time. He is seriously the happiest kid in the room.) If your kid is miserable, then you’re miserable. And also, the school district was torturing us. Now, I know how to deal with them. Assholes.
Our lives, at least by our standards, are pretty normal right now. There are still annoyances though. Last week, a kid on Ian’s special ed bus had a meltdown and peed on the bus and hit the driver. Ian had to see all that and spent 1 hour and 15 minutes on the bus before he got home. I sent out angry e-mails. The kid with pee-meltdown needs more help, but that will cost the school district a lot of money. Instead, they offered to pay me to bus Ian to school on my own.
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I remember being really sad that I couldn’t scrap book all the stuff that all the other moms were scrap booking. There’s this sense that life is passing you by.
It sounds really dumb, but I used to read all the scrap booking magazines and feel so sad. For what’s it worth, there’s actually a well-known lady in scrapbook circles who makes these pages about her son, who is autistic, which I think is actually really cool. She writes kind of profound stuff where she notes that she’s celebrating her child’s life, even if it isn’t what everyone else celebrates.
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This is so real and reads true, although I have not had that exact experience. I know for myself, part of coping with my own challenges has been to realize that yes, some things that “regular people” find easy, I never will, and that does have a lifelong impact, and I can still have a happy life regardless…but I will never get a medal for achieving average even when average is triple-hard to get to.
I hope you do find a publisher for it. If not, I encourage you to think about publishing it online anyway.
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“.. You’ll never meet a parent of a toddler who says, “yes, he’ll make a great middle manager of a tire factory some day and play in a weekend softball league.” Nope, they’re all Olympians and Nobel Prize winners…”
My father was a great disappointment to his dad, who wanted someone to go fishing with and to stick around town. And my father went off to Flagship State U and did a PhD and was involved in arty-literati-lefty circles. Brushed the semi-rural dirt from his shoes and married a Catholic girl he met at university instead of the young lady from the church who his mother had had in mind. His dad had been known to say, “too smart for his own good!” Middle management and weekend softball would have been just fine with them.
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Laura, that’s very good.
If the market is glutted with disability memoirs by parents and therapy how-tos, how about doing something more like Vicki Iovine’s Girlfriend’s Guides? Obviously, it wouldn’t be as ha-ha funny (ha-ha, your kid was invited to not do basketball! or ha-ha, your kid got sent home early from school! or ha-ha you have to stuff your 7-year-old into her school clothes and drag her out the door for school! etc.), but Iovine explains that her focus is to write a book that is primarily mother-focused.
I know that Jeffrey Cohen’s The Asperger Parent: How to Raise a Child with Asperger Syndrome and Maintain Your Sense of Humor covers some of the same territory, but as I can’t remember anything about that book, I suspect that there is room for another book.
Another option is to just turn your book idea into a series of articles. The awful truth is that online magazine articles do have the potential for reaching more people than print books, even though books are more prestigious.
Also, in the age of Kindle books, you could self-publish something very, very easily. And, since your target market reads A LOT of books, a $3-5 Kindle book would fly off the shelf (metaphorically speaking).
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Laura said:
“All parents believe that their baby will grow into a Valedictorian, a genius, a history-changer. He’s also a future major league ball player, a music prodigy, and a damn-good chef. There must be some Darwinian thing here, some survival mechanism hard-wired in our brains, because these delusions of the genius child are so universal. You’ll never meet a parent of a toddler who says, “yes, he’ll make a great middle manager of a tire factory some day and play in a weekend softball league.” Nope, they’re all Olympians and Nobel Prize winners.”
Ever since my middle child was about 4, I’ve thought that he would make either a very good priest or a very good doctor. (I’ve since added physicist or engineer to that mental list.) With our oldest (who is a 6th grader), I didn’t have such premature plans, but for the past few years, my list for her has been pathologist (no need for bedside manner), classicist, linguist, maybe even mathematician. She’d like to be an artist–eek!
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