My Baby Rides the Short Bus: The Uabashedly Human Experience of Raising Kids with Disabilities
Edited by Yantra Bertelli, Jennifer Silverman, and Sarah Talbot
ISBN: 978-1-60486-109-9
Copyright 2009 PM Press
This is a collection of 40 essays, contained in 6 chapters each with their own brief intro. The book also contains a glossary of terms and a resource section, both very helpful.
The formalities aside, I'll get right to the verdict: Highly recommended.
It is reported that 17% of children in the US have special needs. The parents in this collection, for me, hit a nerve. I felt like I knew them, and they knew me, and there was something very comforting in that. While the special need may have been different (although there was 1 essay from a parent with a child with SB) than the needs Emily faces, the struggles seems to be universal and relateable across special needs lines.
17% actually seems like a good part of the population, yet I struggle to SEE these 17% out in the world. Most times I feel like it's 1%. I don't remember knowing any special needs kids growing up, and I don't remember seeing them in high school. Suddenly though, I am the parent of a special needs child and I'm acutely aware how *different* and marginal the special needs community (special needs individuals and their parents/caretakers/siblings). In the foreword, the collective authors noted "We are remarkably absent from the public eye. When we are in the media, it's usually about a miracle cure that made some starlet's child more normal...As parents of differently-abled children, we are often put on pedestals. People wonder in awe about how we cope, or hand us platitudes about how we have landed in a different but wonderful country where we need simply to dream new dreams for our special angel children." (p. vi)
I've always been somewhat of a pessimist. I know there is an ugly side to the world. And once I entered the special needs arena I learned just how ugly it is. Sometimes people don't want to acknowledge this. Some people only want to hear the rosy parts. This is not one of those books. This collection, for example, exposes the realities of what it's like to be denied for things your child needs, how painful it is to hear assumptions about parents and kids with special needs, and how complicated things really are. Below are some exerts:
"I have learned a lot about what I don't know. I don't know where Lucy will end up for preschool and how her classmates will receive her. I have learned that I will probably find defeat in the Individualized Education Program process numerous times before I learn the ropes and how to fight. I have learned not to scream 'Fuck you!' every time I open a condolence card or hear 'I'm so sorry.' I have learned not to say 'Good thing for you that you were lucky enough to have all of your children born healthy and normal every time someone tries to say 'Special kids get special parents.' There is nothing special about me. I challenge people who say this to think about what they would do. Would they really just quit? Of course not, they would get up the next morning and feed their kids breakfast, if they were lucky enough to have a kid who could eat by mouth without a feeding tube, and they would go to therapy appointments, and they would do their best to parent even when they were at the end of their rope." (p. 5)
"...when my son was an infant, other mothers would bounce their healthy babies on their laps and say, thinking it a compliment, 'I could never do what your doing.' What I heard was: I'm not like you. My baby isn't like yours. You're not normal. I knew even then that any chance occurrence could push them into my situation, and that they'd endure, just as I had. Besides, what choice did I have?" (p. 190)
"I'm crying by the second page, but I keep reading the book aloud. It's called Nick Joins In, by Joe Lasker, about a boy in a wheelchair who prepares to go to school for the first time...The teacher in the book lets the class ask the boy questions. Why are you in a chair? Why do you wear braces? Why can't you walk? My voice breaks and I heave as I read but I can't stop. Can't stop reading it aloud. Can't stop crying. Not little tears but full body sobs. Alligator tears. Dinosaur drops.
As I read on, I wonder why the teacher doesn't let the boy ask the other kids questions when they are through interrogating him. It's only fair. As if any of this is fair...
I want you to know sometimes, you're right, it just sucks. I'm not a big fan of playgroups or clusters of moms. I hate hearing birth stories, especially the easy kind. The curious stare of a baby can make my stomach drop. I clench my jaw when I hear: 'He just got up and started walking at nine months.' It's not that I don't like women; I miss the camaraderie of a girls' night out. It's just that I can't play along anymore. I can't share anecdotes. Can't compare. And I don't want to hear how strong I am. How I'm the chosen one.
'Let me tell you what my son can't do,' I want to say when the conversation turns to the accomplishments of our offspring, which it always does. As if the moment we give birth or adopt we forget about our interest in art, literature, politics, relationships, sports, sex, or gossip, and resort to comparing our babies' bowel movements. We babble about head movement, tummy time, and noises that resemble words. We all do it, even those of us who still can't believe we're mothers.
But some of us can't keep up with the conversation-and its not that we live in a different country, we live next door to you, in the house you don't want to look at because you can't imagine living here. You can't imagine being me, a mother of a boy with wheels, a boy who can't fully see. You want to either pity me or place me in a tower. You want to think this was God's plan. Or that my son chose me for my natural parenting abilities. You want to find special traits about me to put distance between us so that your next child could never have special needs. Never. Not you. You couldn't do it - you think." (p. 176-178, from "A View Through the Woods", my favorite essay from the collection for it's honesty and beauty)
"The advice rolls in regularly, the panacea of drug, alternative, and other treatments. We try everything. We visit psychologists, shrinks, neurologists, nurse-practitioners, herbalists, massage therapists, homeopaths, social workers, general practitioners, Asperger specialists, occupational therapists. The Ritalin, as well as some other drugs, make him violent and depressed....
There is no answer. But I can't stop looking. Not when I tuck my kid in at night, and he says, 'I'm just a bad person.'
'No, you're not. You're a good person.'
'That's not true. Somethings is wrong with me.'
But it's not your fault, I want to scream into his bones. You did nothing to deserve this." (p. 249)
"Sometimes Olivia's challenges are nearly invisible...on these days, I sometimes yearn to pretend I am not the parent of a child with special needs. I yearn to just 'pass' as any other parent out at the park with her three young children, to rest in denial for just a moment and enjoy the less intense challenges of plain old parenting. Of course, paradoxically, on these days I am also almost eager to share. I want to shout to the playground audience that this child has only been on the planet for three and a half years but has conquered so much in that short time. I want to hold her up for a round of applause (that would surely trigger a sensory meltdown!) and declare 'victory!' and demand that her medal be proudly bestowed upon her." (p. 257)
As a parent of any child, you know your child best, know their needs, know what is best for them. As the parent of a special needs child, often you lose this privilege. This was a theme I saw in many of the essays and I related a lot to that. Suddenly everyone else knows what is best for your child. People who have just met your child know what's best. People who won't make eye contact with you or your child know what's best. People think you should have a smile on your face all the time. They don't want to hear what is really going on, and how much your heart might really be hurting. Dozens of people come into your house each week and judge your child. They JUDGE your child. Their development...your ability to parent...the selection of toys and books....how you spend every moment with your child. Your life is exposed and open to strangers. People offer advise on, or downplay, your advocacy struggles and what the experiences are/will be like, even though these people have no direct experience and are not parents of children with special needs. All these uglies are part of the real experience of special needs parents. The collection here takes these head-on with no sugar coating, no glossy over-lay. Just an honest selection of real experiences and emotions from parents of special needs kids.
Hopefully you go out and pick up this book. What's nice, too, is that it's essay form. So while you're waiting for the physical/speech/occupational/aqua therapist, or cleaning before they come over, or while your waiting in the doctor's office, or anticipating that IFSP/IEP meeting, or the medicaid review, or doing your follow up therapies, or squeezing in some *fun* time with your kids, you can read an essay. Voila!
Edited by Yantra Bertelli, Jennifer Silverman, and Sarah Talbot
ISBN: 978-1-60486-109-9
Copyright 2009 PM Press
This is a collection of 40 essays, contained in 6 chapters each with their own brief intro. The book also contains a glossary of terms and a resource section, both very helpful.
The formalities aside, I'll get right to the verdict: Highly recommended.
It is reported that 17% of children in the US have special needs. The parents in this collection, for me, hit a nerve. I felt like I knew them, and they knew me, and there was something very comforting in that. While the special need may have been different (although there was 1 essay from a parent with a child with SB) than the needs Emily faces, the struggles seems to be universal and relateable across special needs lines.
17% actually seems like a good part of the population, yet I struggle to SEE these 17% out in the world. Most times I feel like it's 1%. I don't remember knowing any special needs kids growing up, and I don't remember seeing them in high school. Suddenly though, I am the parent of a special needs child and I'm acutely aware how *different* and marginal the special needs community (special needs individuals and their parents/caretakers/siblings). In the foreword, the collective authors noted "We are remarkably absent from the public eye. When we are in the media, it's usually about a miracle cure that made some starlet's child more normal...As parents of differently-abled children, we are often put on pedestals. People wonder in awe about how we cope, or hand us platitudes about how we have landed in a different but wonderful country where we need simply to dream new dreams for our special angel children." (p. vi)
I've always been somewhat of a pessimist. I know there is an ugly side to the world. And once I entered the special needs arena I learned just how ugly it is. Sometimes people don't want to acknowledge this. Some people only want to hear the rosy parts. This is not one of those books. This collection, for example, exposes the realities of what it's like to be denied for things your child needs, how painful it is to hear assumptions about parents and kids with special needs, and how complicated things really are. Below are some exerts:
"I have learned a lot about what I don't know. I don't know where Lucy will end up for preschool and how her classmates will receive her. I have learned that I will probably find defeat in the Individualized Education Program process numerous times before I learn the ropes and how to fight. I have learned not to scream 'Fuck you!' every time I open a condolence card or hear 'I'm so sorry.' I have learned not to say 'Good thing for you that you were lucky enough to have all of your children born healthy and normal every time someone tries to say 'Special kids get special parents.' There is nothing special about me. I challenge people who say this to think about what they would do. Would they really just quit? Of course not, they would get up the next morning and feed their kids breakfast, if they were lucky enough to have a kid who could eat by mouth without a feeding tube, and they would go to therapy appointments, and they would do their best to parent even when they were at the end of their rope." (p. 5)
"...when my son was an infant, other mothers would bounce their healthy babies on their laps and say, thinking it a compliment, 'I could never do what your doing.' What I heard was: I'm not like you. My baby isn't like yours. You're not normal. I knew even then that any chance occurrence could push them into my situation, and that they'd endure, just as I had. Besides, what choice did I have?" (p. 190)
"I'm crying by the second page, but I keep reading the book aloud. It's called Nick Joins In, by Joe Lasker, about a boy in a wheelchair who prepares to go to school for the first time...The teacher in the book lets the class ask the boy questions. Why are you in a chair? Why do you wear braces? Why can't you walk? My voice breaks and I heave as I read but I can't stop. Can't stop reading it aloud. Can't stop crying. Not little tears but full body sobs. Alligator tears. Dinosaur drops.
As I read on, I wonder why the teacher doesn't let the boy ask the other kids questions when they are through interrogating him. It's only fair. As if any of this is fair...
I want you to know sometimes, you're right, it just sucks. I'm not a big fan of playgroups or clusters of moms. I hate hearing birth stories, especially the easy kind. The curious stare of a baby can make my stomach drop. I clench my jaw when I hear: 'He just got up and started walking at nine months.' It's not that I don't like women; I miss the camaraderie of a girls' night out. It's just that I can't play along anymore. I can't share anecdotes. Can't compare. And I don't want to hear how strong I am. How I'm the chosen one.
'Let me tell you what my son can't do,' I want to say when the conversation turns to the accomplishments of our offspring, which it always does. As if the moment we give birth or adopt we forget about our interest in art, literature, politics, relationships, sports, sex, or gossip, and resort to comparing our babies' bowel movements. We babble about head movement, tummy time, and noises that resemble words. We all do it, even those of us who still can't believe we're mothers.
But some of us can't keep up with the conversation-and its not that we live in a different country, we live next door to you, in the house you don't want to look at because you can't imagine living here. You can't imagine being me, a mother of a boy with wheels, a boy who can't fully see. You want to either pity me or place me in a tower. You want to think this was God's plan. Or that my son chose me for my natural parenting abilities. You want to find special traits about me to put distance between us so that your next child could never have special needs. Never. Not you. You couldn't do it - you think." (p. 176-178, from "A View Through the Woods", my favorite essay from the collection for it's honesty and beauty)
"The advice rolls in regularly, the panacea of drug, alternative, and other treatments. We try everything. We visit psychologists, shrinks, neurologists, nurse-practitioners, herbalists, massage therapists, homeopaths, social workers, general practitioners, Asperger specialists, occupational therapists. The Ritalin, as well as some other drugs, make him violent and depressed....
There is no answer. But I can't stop looking. Not when I tuck my kid in at night, and he says, 'I'm just a bad person.'
'No, you're not. You're a good person.'
'That's not true. Somethings is wrong with me.'
But it's not your fault, I want to scream into his bones. You did nothing to deserve this." (p. 249)
"Sometimes Olivia's challenges are nearly invisible...on these days, I sometimes yearn to pretend I am not the parent of a child with special needs. I yearn to just 'pass' as any other parent out at the park with her three young children, to rest in denial for just a moment and enjoy the less intense challenges of plain old parenting. Of course, paradoxically, on these days I am also almost eager to share. I want to shout to the playground audience that this child has only been on the planet for three and a half years but has conquered so much in that short time. I want to hold her up for a round of applause (that would surely trigger a sensory meltdown!) and declare 'victory!' and demand that her medal be proudly bestowed upon her." (p. 257)
As a parent of any child, you know your child best, know their needs, know what is best for them. As the parent of a special needs child, often you lose this privilege. This was a theme I saw in many of the essays and I related a lot to that. Suddenly everyone else knows what is best for your child. People who have just met your child know what's best. People who won't make eye contact with you or your child know what's best. People think you should have a smile on your face all the time. They don't want to hear what is really going on, and how much your heart might really be hurting. Dozens of people come into your house each week and judge your child. They JUDGE your child. Their development...your ability to parent...the selection of toys and books....how you spend every moment with your child. Your life is exposed and open to strangers. People offer advise on, or downplay, your advocacy struggles and what the experiences are/will be like, even though these people have no direct experience and are not parents of children with special needs. All these uglies are part of the real experience of special needs parents. The collection here takes these head-on with no sugar coating, no glossy over-lay. Just an honest selection of real experiences and emotions from parents of special needs kids.
Hopefully you go out and pick up this book. What's nice, too, is that it's essay form. So while you're waiting for the physical/speech/occupational/aqua therapist, or cleaning before they come over, or while your waiting in the doctor's office, or anticipating that IFSP/IEP meeting, or the medicaid review, or doing your follow up therapies, or squeezing in some *fun* time with your kids, you can read an essay. Voila!
