The Heartbreak of Parenting a Special Needs Child
Victoria Fann
March 20, 2007
“We can no longer educate your son.” said the director of M’s school.
I swallowed the rusty metal rage that lay on my tongue. The room stank with nervous silence as she spoke. The group of teachers and special ed experts around the table simply stared, looking silly with their adult bodies crammed into kid-sized chairs.
You have no right to do this!” I blurted out thinking how this large boisterous woman with her handmade jewelry and large flowing skirts knew nothing about M. She didn’t know about how his father was laid off weeks after he was born or how we had to abandon our newly purchased house or how much trouble he had latching onto my breast because he was born with teeth coming in. No, she wasn’t interested how silky blonde his hair used to be or how buttermilky sweet his breath was or how when I picked him up from pre-school he would hesitate for a moment and then ask a group of children “Who wants a hug?”
Now nine, M’s behavior, his fidgety restlessness, his wandering creative mind, his noisy disruptions in the classroom had gotten on the nerves of his teacher. His appeal to the director had worked; they were giving M the boot.
Let them try.
I’d like to know…” I began, lingering a little, “…how you sleep at night after inflicting this kind of pain on children and their families?”
She flinched. I took this as a sign, an invitation to continue. I told her that it would be up to her to tell my son that she wanted him to leave the school he loved and looked forward to going to, and that she would have to be with him for the weeks and months it would take for him to mourn the loss of his teachers and his friends, and that she would have to pay for counseling out of her own pocket to help him through this, because I refused to be the one to do it.
My eyes were blinded by tears, and I was shaking badly. The venom inside of me had turned to a sour soup. I ran from the room. Students and teachers in the hallways watched me as I ran past, their eyes searching. My husband tailed me, hampered by the mounds of paper, books and notebooks we brought along.
Later a friend called me to tell me her daughter saw me crying at school, and how it upset her. She asked me if everything was okay. I told her no, but that I would explain more in person.
The heartbreak of having a special needs child is akin to having a twenty pound weight on your heart all the time. There are times that you feel you can’t go on. That your body has suddenly become too heavy and the world has somehow gotten too big. The unfairness of life rears its ugliness daily, sometimes several times a day. My son has been called “fat”, “stupid”, and “a girl” by other boys. Kids will be kids. They somehow need to notice each other’s differences, how they are better, how they measure up. In that process someone, usually a kid who is overweight or slow at learning or non-athletic (my son is all of those), has to be at the bottom. In order for there to be winners, someone has to lose.
What is also disturbing is how little parents of "normal" children are aware of what the rest of us are going through. They judge our children as incorrigible rascals who need better discipline, and they wish our children would disappear and stop demanding their children’s teachers’ attention. I even heard one parent call a child who was behaving badly in his daughter’s classroom “psycho”. He was referring to a first grader. What could I say to help him to understand the inability some of these kids have to control their impulses? His point while valid, was harsh and ignorant. But why should he have to think about it? His daughter is “normal”.
Pain and disappointment are constant companions of parents who have to hear their children described as mentally deficient or a disruption in the classroom. We kiss the ground when they are invited to a birthday party. We are happy with small achievements in school. Any sign of learning is a godsend.
Back to my son’s school. We ended up in mediation, basically a four hour meeting with seven people on their side and just two of us on ours. My son received a “stay put” which means he won’t be leaving his school anytime soon. The process was intense, grueling, and humiliating, and it is far from over. What I learned is that parents need to become experts on special education law. It’s practically a full time job. While the law is in parents favor, the odds are stacked against you unless you’re willing to commit an inhuman amount of time and effort into defending your child’s rights.
It’s all relative. I’ve seen children with far greater challenges than my son. I've heard parents talking about children that can’t walk or talk or who spend all day having seizures. My heart goes out to them and their stories make me count my blessings. It could be worse, I tell myself, when I receive yet another complaint from a teacher or another evaluation that says how little improvement they see. It could also be a hell of a lot better.
(Author's Note: This piece was written three years ago. My son is now twelve and is still attending the same school. While the situation has improved, the challenges continue and my family is currently looking for another school for him. In a perfect world, learning differences would be celebrated, rather than labeled and judged. An uphill battle, to be sure, but one well worth fighting.)
I swallowed the rusty metal rage that lay on my tongue. The room stank with nervous silence as she spoke. The group of teachers and special ed experts around the table simply stared, looking silly with their adult bodies crammed into kid-sized chairs.
You have no right to do this!” I blurted out thinking how this large boisterous woman with her handmade jewelry and large flowing skirts knew nothing about M. She didn’t know about how his father was laid off weeks after he was born or how we had to abandon our newly purchased house or how much trouble he had latching onto my breast because he was born with teeth coming in. No, she wasn’t interested how silky blonde his hair used to be or how buttermilky sweet his breath was or how when I picked him up from pre-school he would hesitate for a moment and then ask a group of children “Who wants a hug?”
Now nine, M’s behavior, his fidgety restlessness, his wandering creative mind, his noisy disruptions in the classroom had gotten on the nerves of his teacher. His appeal to the director had worked; they were giving M the boot.
Let them try.
I’d like to know…” I began, lingering a little, “…how you sleep at night after inflicting this kind of pain on children and their families?”
She flinched. I took this as a sign, an invitation to continue. I told her that it would be up to her to tell my son that she wanted him to leave the school he loved and looked forward to going to, and that she would have to be with him for the weeks and months it would take for him to mourn the loss of his teachers and his friends, and that she would have to pay for counseling out of her own pocket to help him through this, because I refused to be the one to do it.
My eyes were blinded by tears, and I was shaking badly. The venom inside of me had turned to a sour soup. I ran from the room. Students and teachers in the hallways watched me as I ran past, their eyes searching. My husband tailed me, hampered by the mounds of paper, books and notebooks we brought along.
Later a friend called me to tell me her daughter saw me crying at school, and how it upset her. She asked me if everything was okay. I told her no, but that I would explain more in person.
The heartbreak of having a special needs child is akin to having a twenty pound weight on your heart all the time. There are times that you feel you can’t go on. That your body has suddenly become too heavy and the world has somehow gotten too big. The unfairness of life rears its ugliness daily, sometimes several times a day. My son has been called “fat”, “stupid”, and “a girl” by other boys. Kids will be kids. They somehow need to notice each other’s differences, how they are better, how they measure up. In that process someone, usually a kid who is overweight or slow at learning or non-athletic (my son is all of those), has to be at the bottom. In order for there to be winners, someone has to lose.
What is also disturbing is how little parents of "normal" children are aware of what the rest of us are going through. They judge our children as incorrigible rascals who need better discipline, and they wish our children would disappear and stop demanding their children’s teachers’ attention. I even heard one parent call a child who was behaving badly in his daughter’s classroom “psycho”. He was referring to a first grader. What could I say to help him to understand the inability some of these kids have to control their impulses? His point while valid, was harsh and ignorant. But why should he have to think about it? His daughter is “normal”.
Pain and disappointment are constant companions of parents who have to hear their children described as mentally deficient or a disruption in the classroom. We kiss the ground when they are invited to a birthday party. We are happy with small achievements in school. Any sign of learning is a godsend.
Back to my son’s school. We ended up in mediation, basically a four hour meeting with seven people on their side and just two of us on ours. My son received a “stay put” which means he won’t be leaving his school anytime soon. The process was intense, grueling, and humiliating, and it is far from over. What I learned is that parents need to become experts on special education law. It’s practically a full time job. While the law is in parents favor, the odds are stacked against you unless you’re willing to commit an inhuman amount of time and effort into defending your child’s rights.
It’s all relative. I’ve seen children with far greater challenges than my son. I've heard parents talking about children that can’t walk or talk or who spend all day having seizures. My heart goes out to them and their stories make me count my blessings. It could be worse, I tell myself, when I receive yet another complaint from a teacher or another evaluation that says how little improvement they see. It could also be a hell of a lot better.
(Author's Note: This piece was written three years ago. My son is now twelve and is still attending the same school. While the situation has improved, the challenges continue and my family is currently looking for another school for him. In a perfect world, learning differences would be celebrated, rather than labeled and judged. An uphill battle, to be sure, but one well worth fighting.)
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