Special Needs

Special Needs

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Open Letter to the World about my Special Needs Kid

If you are a parent, it has happened to you at least once.   You announce that is time to leave the super cool playground or insist that your little one share a favorite toy and out of the blue, you are met with a writhing, screaming puddle of meltdown right in the open for all to see.  It’s an embarrassing scene that can leave you feeling helpless as you cover your head and dart for the door, but it’s just a part of the hard knocks of parenting.

If you are the parent of a child with special needs, you know this scene all too well, only you have experienced this so many more times and the meltdown scenes have likely extended well past the accepted terrible twos and threes age group.  As a mom of a special needs kiddo, I certainly dread the next public meltdown and fear the triggers that will cause it, but it is the judgment of the other parents around me that makes me want to hide at home and never leave the house again.  If I could just have a minute to tell those around me what I really think and feel about their reactions to my all too public parenting disasters, I would say this……

To the parents who shift in their seats, look away, or get that uncomfortable look:

Honestly, I don’t fault you for your feelings of discomfort.  It’s probably because no one ever took the time to explain to you what you can do to help.  Let me see if I can do that now.  First, you have to assume that we are doing our best-my son and me.  I know the knee jerk reaction is to assume that I am bad mom and he is a bad kid, but on most days we really are giving the world the best we can offer.

Here’s what you can do to help make things easier while I wade my way through another meltdown.  You can easily give me a knowing and sympathetic smile-you know, that smile that says you’ve been there and you understand.  That instantly puts me at ease and helps me do my job to bring my child back from the ledge.  If you want to say something, you can ask me if there is something you can do to help.  I will likely say no, but just knowing that you care enough to offer is soothing to my soul.  If you feel like being my personal hero, you can wait until the meltdown is over and gently tell that I am a good mom.  No kinder words were ever spoken.

To the who felt the need to not just give me dirty looks, but actually say something about my parenting out loud:

I would love for you to know that I am really genuinely happy that life was so kind as to deal you a hand that allows you to naively believe that behavior of the kid is the direct result of the effort of the parent.  Oh, if only that were true!  If my kid’s behavior had anything at all to do with how hard I have worked at it, he would be the best behaved kid in the history of ever.

You probably are a really good parent, who happened to get a really easy kid (although if karma has anything to do with it, you’ll be swallowing your pride somewhere in the teen years).   Guess what, I am a pretty good parent, too.  In fact, if we were stacking up parenting street cred, I could probably run circles around you with my honorary PHD in psychology and the skads of seminars and experts whose advice I have tried to absorb.  But, parenting knowledge and even parenting effort mean nothing when it comes to actual parenting, especially parenting special needs kiddos.

To the teachers, coaches, and leaders who instruct these special kids:

I know it is tough to deal with a kid who doesn’t fall in line and fit in the box.  I know the outbursts are disruptive and I know the behaviors are sometimes baffling and put a cramp in your lesson plans.  I also know that you secretly wish we would quit your class or find another program.  Guess what, I secretly wish we could quit your class too.  It would certainly be easier for me.  Being the mom of the kid who can’t stand in line or who flips out every single time he loses a game is like a little private hell, only it’s not private, but on display for all the world to see.  At least if I stayed in my living room, I could keep it all to myself and not have to endure the glares and painful parent/teacher conferences where you remind me (as if I don’t know already) of all the ways my kid doesn’t  fit.

But, we can’t quit, of course, because if we have any chance of helping this child become his best, he is going to have to interact with the world, trying and failing over again until he achieves some success.   I know that makes your job harder, but think of the impact you can make on his future if you are willing to give him every chance for success.

To the countless friends, family, and acquaintances who we meet each day:

I know it’s hard to know what to say or do when you see a child acting so outside the norm.  I realize it’s uncomfortable and that you silence and your shifting in your seat is almost always a way to for your process how to help, but not hurt.  Thank you for taking time to consider that your words and actions will have an impact on me and my sweet son, but remember your lack of words and actions impacts us too.  Now, you don’t know what to say, right?  Let me see if I can help.

First, please don’t pity me.  I know it looks hard (and believe me, some days it is really hard), but my life is not miserable and I do not feel sorry for myself.   In fact, my life is richer because of my special needs kiddo, but that’s really a story for another time.  Also, please don’t ignore me.  The world of special needs is very lonely. Nobody calls for playdates.  There aren’t a lot of birthday party invitations.  I have found ways to deal with that for my son, but I still feel left out so often and just wish that someone would look past my son’s meltdowns and be willing to make friends with me.  I am so much more than a mom to a kid with special needs.

Most of all, please just treat us like you would treat anyone else.  I know that from the outside, we look so different and foreign, even weird.  But, we are just like you in so many ways and like everyone, we just want to be treated with value.

Guest Author:

Jessica and her family can be described in one word—average.  They are a middle class family living in Middle America right smack in the middle of the suburbs with 3 bedroom 2 1/2 baths and a minivan.  This fall they are trading all of that to hop into a camper and take off on an open ended trip around the country.  You can join the adventure by following along at Suitcases and Sippy Cups

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