Monday, July 11, 2016

Somewhere on the Spectrum. Written by Ilene


Somewhere on the Spectrum

Hello.  My name is Ilene, and I’m a house elf.  (chorus “Hello, Ilene!”).

Why do I call myself that?  Well, I’m “Mom” to 3 amazing children (ages 11, 9.5 and 9.5).  I do the things around the house that are generally considered invisible……laundry, preparing lunches, cooking and cleaning (not my strong suit), chauffeuring from activity to activity…..the thankless things that all Moms everywhere do and complain that no one recognizes their efforts.  So, what makes me different from the millions of others?

I’m a “MoM” (Mother of Multiples) and the twins are both on the Autism.  They are a girl and a boy and they are now nearly nine-and-a-half years old (don’t you DARE call them nine year olds!).  All right, that narrows my list of Moms a bit from all of us who do those activities I mention above.  So, I guess I’m not much different from anyone else.

Even though I can legally leave them at home now for brief periods of time (which I’ve had no qualms about doing with their older brother), I need to be sure the twins are supervised 100% of the time.  My son has an on again / off again history of wandering off.  My daughter cannot handle any infractions to any rules in her presence.  So, when they aren’t in school or when their Dad isn’t home and errands need to be run, I take them with me.  I am careful not to choose a building with an elevator if I can avoid it, and if I can’t, making sure we stay as far away from one whenever we leave the house.  

When they were little, this was easy.  I had a system in the grocery store…..the twins would be in the stroller, Big Brother in the cart and I would push the stroller and pull the cart.  We would stop by the bakery towards the end of our visit and, if they behaved, they would earn a cookie.  We never had any mean looks, even if one of the kids wasn’t behaving in an ideal fashion.  In fact, several other MoMs would come up to me and tell me “Whatever you are going through, this passes so keep smiling and enjoy the moments”.  I would get home and Big Brother would climb out of the car while I opened the front door to the house and put the purchases inside the house, then I’d come back to the car and lift Twin 1 in my right and Twin 2 in my left and we’d walk in the house together.  Over time, I would put the purchases away and that was just our life.  Then Autism happened.

While the Autism diagnosis made me understand so many of my children’s “quirks”, it introduced so many more questions.  And here we sit, about seven years later, living what is “our life”.  To us, it’s normal.  Someone is always around to keep an eye on the twins….they are never unsupervised (kept within hearing distance, even if they are out of sight for a brief period).  Bathroom doors remain open and the thought of privacy or personal space really doesn’t exist in our world.  We still watch preschool programs on television and pretty much keep to ourselves.

But back to the house elf analogy……

Whenever I go out in public with the twins now (and I find myself keeping that as infrequently as possible as they grow older) to do the Mom mundane daily tasks, I feel like I have to explain them to everyone we meet.  Sometimes I do this by simply wearing a shirt that somehow indicates that I’m an Autism Mom (either by saying that overtly or just by showing the Autism ribbon).  Sometimes I keep my son in a Caroline Cart at the grocery store to keep him easier to manage.  But I always feel like I need to explain their behavior to others….to make them see that I’m NOT a bad parent despite my children’s behavior (that they cannot control).  Don’t misunderstand me…..I am VERY proud of my children (all 3 of them)!  They are my entire world and there isn’t anything that I wouldn’t do for them.

But when I go home, I feel I need to punish myself for trying to explain away their behavior and potential misdeeds.  Unlike Dobby (Harry Potter reference for those of you who are unfamiliar), I don’t hit myself over the head with a frying pan or iron my hands, but I do admonish myself for not displaying the pride I feel in them.  I chide myself in worrying about what other people think instead of making sure that they get the most out of the experience of being a part of this world.  Maybe I’m trying to protect them rather than hiding them.  At least that’s what I tell myself.  But I know that’s not 100% true.

Too often, social media goes wild over incidents where people blame the parents.  And it puts fears into those of us who do everything in our power to do everything right.  We see the way that strangers look at us when our children have a meltdown.  When they are 2 years old, they don’t care…..they either ignore completely and some even try to help.  But when it’s a 9 or 10 year old, they give you a holier-than-thou look that clearly states “Why can’t you control your children?”.  It makes parents scared to leave their homes.  I’ve heard it said that being a special needs parent is like living with PTSD (Post Traumatic Stress Disorder).  And that’s definitely the truth!  

This is what needs to stop.  Any special needs family knows in their hearts that it’s not a question of “IF” their children will be bullied, but “WHEN”.  I and families like mine deserve to live our lives…..running errands, going to school, spending time at the park or at the pool…..without fear of what others think of them.  I shouldn’t feel like I need to hide in my house from the world in order to keep my kids (and my ego) safe.

And I’m one of the lucky ones.  My children are considered high functioning.  The school my children attend has a program that is well integrated in the school with the added benefit of knowing that the entire school is exposed to what a child who carries various diagnoses are like, and they learn this from kindergarten.  They are encouraged to befriend and help each other…..to be respectful of all of their classmates.

The time has come to stop making parents of special needs children feel like house elves.

Ilene and Family

My name is Ilene and I’m “All Things Mom”.  I blog infrequently at A Day In The Life Of The Crazies and love all things Harry Potter!


**If you want to share your story, please email me at grapejellyonpizza@gmail.com.  As always, join us daily at the GJOP FB page.  

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