I’ll never forget the Matthew’s first day of Kindergarten.
He was placed in a special education class at our local school. I dressed him in a new red shirt and blue shorts that I had bought at The Gap. I combed his hair and took a picture of him for the scrapbook, hoping that someday I could say, “This picture was taken on your first day of kindergarten, just months before we cured you of autism!” Matthew’s expression in the picture wasn’t happy or sad but passive, like a man waiting in line at the bank.
There were seven children in the class including Matthew—four boys and two girls. None of them, except for the blind boy, Adam, looked disabled as they sat at their desks. I wondered what the other kids “had”, and whether Matthew even belonged in the class.
A few weeks later, I invited the mothers of the children in Matthew’s class over for coffee. We went around the small circle, introducing ourselves and describing our child’s disabilities.One boy in the class, like Matthew, had autism, three had ADHD, and then there was Adam, the blind boy.
I was struck by how distressed and fatigued the mothers of the children with A.D.H.D seemed.
“What are they so undone about?,” I thought. “I’d take A.D.H.D over autism any day.”
I would later figure out that, sure, some kids are more complicated than others, but every child, disabled or not, comes with a unique set of gifts and challenges.
And every parent has a story.
Here is just one story from a dear friend:
I’m coming out.
Not as in the Diana Ross version of singing to the world in celebration. Not as in the brave way many of my friends have come out as gay or lesbian in a hetero dominated world. But as a mom. I’m coming out as an imperfect mom of imperfect children. I’m tired of pretending that my children are fine when sometimes they are not, that I know what I am doing, when often I don’t. I am flawed and so are they.
My youngest daughter has ADHD and a mood disorder. Most people are familiar with ADHD with the stereotyped perception of hyperactivity and inattention. Most people have heard the term “executive functioning” even if they don’t quite know what it means. Yet, “mood disorder” is a diagnosis that is not as common for a child. Basically, it means that my 9 year old daughter’s psychiatrist is wondering if she is bipolar, but isn’t quite ready to say.
Since day one of her young life Sarah has been different, challenging to the point of pervasive exhaustion, and enchanting with the many ways she perceives the world. Since toddler-hood she has amazed us with her love of insects, animals, and ecology. Since kindergarten she has frequented the principal’s office at school on a regular basis due to over the top meltdowns. Her zero to ten flight or fight responses have even led to her being carried across campus while she screamed, cried, resisted and was then restrained for an hour by two adults because she would not cooperate with their need to contain her rage when everything in her being was driving her to run, to hide, to be by herself, when every cell in her body pulsed with anger, humiliation, and fear.
I’ve walked through campus as the parents of girls Sarah’s age turn away from me, avoiding my eyes as I avoid theirs. I’ve heard from her classmates about the birthday parties she is never invited to, the mother daughter book clubs they attend, the soccer teams, dance classes, swim team, and so on.
I’m done. Selfishly, I can’t tolerate it anymore. I want out of the world of “, “my kids are grand and let me tell you about them”, and “my child is advanced and needs to be challenged” ways of thinking. I want to be around other parents of children who don’t fit, not the parents of neurotypicals or high achievers, but the families who are nurturing the quirky kids. The parents who are utterly exhausted like me. The parents who will go to any length, spend all their money and emotional effort, trying, hoping, PRAYING PRAYING PRAYING for some small sign of forward movement, an indication that their child will be OK.
I know I sound bitter and guess what? I am. I am isolated and vulnerable. People expect me to have it together and I am filled with self doubt. Most of my non-working hours are spent going to the psychiatrist or the learning differences specialist, the neuropsychologist, the optometrist for visual integration problems, or meeting with the teacher to explain, yet again, how frustrating and defeating it feels for my child to walk into class with learning differences everyday. We’ve tried therapeutic horseback riding lessons, social skills groups, and harp lessons. Our home is filled with critters; feathered, furry, scaly, you name it. All in an effort to help her, our sweet child, the baby I nursed for three years because it was all that gave her comfort, the strong willed force of nature, the one we call Sarah. She’s our girl.
To have a child with special needs is lonely and I refuse to hide anymore. For so long I didn’t want it to be true, but it is. It is so. I don’t want pity. I certainly don’t want blame though I fear it and regularly inflict it on myself. I just want company because to be alone with it is too much to bear. I’m coming out. I’m struggling with a child who doesn’t fit society’s expectation, a child who suffers more than most children. I can’t take away her pain, but I won’t stop trying, nothing can get in the way of trying to help her. I simply do not want to hide anymore.
*Kate Cooper, mother of three
*psuedonym