Family, Parenting, Special Needs

Tread lightly…

mae every dayRecently, I attended a meeting of our local school board.  They  were getting together to discuss a projected budgetary shortfall and, as a new member of the school community, I am interested in learning more about how it all works.  I introduced myself as a parent but didn’t indicate that I had a special needs child.  Truthfully, it didn’t seem to me to be relevant; I was just a parent wanting what is best for her children.  Although, as a special needs parent we aren’t allowed to think about “best.” By law, we are entitled to “appropriate” so the word “best” is far out of our reach.  But, that wasn’t on my mind at all as I settled into my seat and made polite small talk with the woman next to me.

The budget conversation inevitably included discussion of special education.  There was a moment when someone suggested that they used to keep a financial cushion because the boiler could explode. Now you had to maintain a cushion because you never know who could move into your district.  This was followed by a comment from a school board member, “We have a $50,000 child we have never even met.” I guess she is referring to a child whose needs are so severe that they have an out-of-district placement. The district pays for the child to go to a school that can meet their needs since the district, for whatever reason, is unable to “appropriately” educate that child.

I didn’t say anything, my heart was beating too fast, my skin was too prickly and there were tears in my eyes and voice.  What I would have liked to say is: “A $50,000 child you will never meet? This probably means that this child’s parents have never really met him or her either.  They don’t know what their child’s favorite color is, or what they would like to be when they grow up.  If a child’s needs are severe enough to be placed out of district, chances are that child will never be a grown up, but a child forever. I bet that child doesn’t speak, maybe isn’t mobile. These kids are unpredictable, don’t always sleep through the night, require a small army of specialists and doctors.”

As a special needs parent I often feel like we are taking more than our fair share. It is clear in the glares of airline passengers or even glances over magazines in doctors’ offices.  I get it, my kid is ruining your peace and quiet.  Special needs parents have to develop a thick skin.  That’s been a little easier for us because Mae is totally unconcerned about whether or not someone wants to read quietly.  If she wants to jump and sing at the top of her lungs, she will do so with abandon…It is her blessing and her curse.

Mae had a rough start to the week at school, prompting a staff member to say to Colin, “You are lucky she is cute.”  Later, when he told me about it, we were laughing, “lucky she is cute? Or else what?”

When you have a special needs child, people say ridiculous things to you all time.  My favorite is: “I don’t know how you do it.” As if there were some sort of roadside dropbox I wasn’t taking advantage of.  She is my child.  I don’t spend my days wishing I could find some reasonable alternative to being her mother.

So, I have been reminded yet again this week how important it is to watch our words, and to remember that you have no idea what someone’s story is just by looking at them.  I don’t believe that any of these people meant to do any harm with their words.  I also know that whatever people may see when they look at my child is different than what I see.  She may be a budget line item to some, or a cute nuisance to others. To me she is magic and fierce. She has an amazing belly laugh and can jump higher than anyone in our family.  I don’t know what her favorite color is, but I know she hates jeans.  Chances are she will never be an astronaut, an actress, a fairy princess or a veterinarian, but she is my child and she always will be.  It is a lesson to tread lightly on ground we have never walked.  You never know when you could unwittingly cause pain.

14 thoughts on “Tread lightly…

  1. LOVE LOVE LOVE the last paragraph here. And yes, my heart breaks to think of you sitting “incognito” at that meeting. Meetings for the usual (placement, diagnosis) started so early for us that it’s impossible for me to put myself in those parents’ shoes. But I’d like to think I would never have felt/spoken that way — and I’d dare to dream that if any of those people actually got to know these real life situations – of the whole gamut form cute to non- – they’d be a heck of a lot more compassionate.
    love to my move-inspiration! and deep breaths…

  2. Love!! So well said. You’re my hero. Miss you so. Xxoo

    Sent from my iPhone


  3. Hi. A friend shared this post, it’s so well said. I have an $80,000 child who attends a school out of district because our local one could not meet his needs. When he was younger, I did not know his favorite color or job aspirations. But now he is 12, and I do (red, firefighter). Perhaps one day Mae will communicate her desires and dreams to you. Like you, I have heard all sorts of things come out of people’s mouths over the years. Once, I had an argument with another woman who said that if there were 10 kids with mild autism and one with profound autism, the money should go toward the mildly affected kids because they would be “better candidates for contributing to society.” When I said they all deserved help, she called me “idealistic.” (And then I further pissed her off by writing about this.) My skin: It has gotten thicker. But my fingers? They should be downright calloused by now from the venting I’ve done online!

  4. Magic and fierce. Favorite colors change. Magic and fierce last, especially with parents who accept and encourage such qualities. Thanks for sharing.

  5. Beyond painful. We love Mae because she is yours and because she is a part of our family. Naomi

  6. Beautiful and incredibly powerful post today. Wow! So true and so well articulated. Love you guys. Hope you are all doing well. Miss you.

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