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Before You Judge A Special Needs Parent

Before you judge a special needs parent, please consider the other 23 hours of the day you are not seeing. 


I stood in line, worried about my youngest’s increasing irritability, hoping we could just buy the frame and get out of the store.

Normally, I would never (and I repeat, never) bring both of my boys, together, to a large store. My oldest struggles with the lighting and noise. My youngest with the crowds, the smells and impulse control.

But my oldest had been obsessing all morning long about getting a frame for his signed poster. It is probably one of his most precious possessions and he could not rest until he knew it was safe.

The line was long. I tried to distract my youngest, and seeing some decorations nearby, I asked him what he wanted to do to decorate for Halloween. My oldest sighed heavily in disgust, and began schooling us on why it was not appropriate to have Halloween decor out on display in mid-August. My youngest disagreed, and the argument I had been anticipating since we stepped foot in the store began.

When the overwhelm becomes too much, they tend to turn on each other, or me, or both.

I quickly stood in between them, prepared to physically break them up if necessary, and asked my oldest to please go grab some extra printer paper. We didn’t need any printer paper, but we did need for him to take a break.

He left and my youngest sat down on the floor with his service dog, Sammy, nuzzling him and trying to calm down. I blinked back tears of exhaustion and frustration.

“Why does every single thing have to be so hard?” I thought to myself.

Before You Judge A Special Needs Parent

Ahead of us in line was another family. This mom had a teenage daughter and a son who looked to be a little younger than my youngest. In contrast to my yoga pants, ugly messy bun and no make-up look, she was cute, pulled together and had clearly been able to take some time to think through her outfit.

Her daughter asked her where they were going next. She casually answered. “Let’s go look at home stuff next door. Then we can grab Taco Bell for lunch and head to Costco. After that we need to pick-up Daddy from work and get something for dinner tonight.”

I was actually surprised when her children nodded and agreed. They were perfectly fine with this plan. In fact, the only reaction was on the part of her son.

“Can I get a crunchy taco?”

That was it. The only concern. “Can I get a crunchy taco?”

I felt like I’d been punched in the stomach.

Before You Judge A Special Needs Parent Not The Former Things, Shawna Wingert

Before You Judge A Special Needs Parent

This is one of the hardest to explain and most difficult parts of parenting children with special needs.

Seemingly simple and easy tasks are no longer simple and easy. 

I share this comparison not in jealousy or to discourage anyone. I share this comparison between another mom and me, because it is the best way I know to communicate the complexity and constancy of being a special needs parent.

This is a ten minute snapshot of two moms’ lives.

Just ten minutes. Please, before you judge a special need parent, consider the other 23 hours and 50 minutes.

I could easily tell you about what I imagine the differences to be in terms of what it took to get both of her children to the store in the first place. (I am pretty sure it did not involve pulling over until everyone could be safe in the car…) Or, I could mention how much I would love to just hit the closest drive through for lunch instead of maniacally planning and preparing every single thing that goes into my food allergy ridden child’s mouth.

I could tell you how much sleep I got the night before, and that I am willing to bet a large sum of money that it was less than the other mom, and probably had been less for years.

All of it, however, would be speculation and I think, unfair to the other mom.

Motherhood is not a contest. I am 100% sure she faces difficulties in her life far beyond my own. They look different – they always do, but that doesn’t mean they aren’t real. 

And this is exactly the point.

Before You Judge A Special Needs Parent Not The Former Things, Shawna Wingert

Before you judge another parent for her choices, whether it be screen time, diet, discipline, financial decisions or any other element of trying to raise children to function in this world, consider this –

You have no idea what led them to this point.

This is especially true for parents of children with special needs.

Even my closest friends and family have no idea what living like this day in and day out for years and years is really like. How could they possibly?

Before you judge a special needs parent, please consider this.

Before You Judge A Special Needs Parent Not The Former Things, Shawna Wingert

Raising children is hard, y’all. On some level, this is true for every single parent out there, special needs or not.

Please, don’t make it harder.

Before you judge a special needs parent, I ask that you take moment and smile at her instead.

Trust me when I say, it will do far more good than you can possibly imagine.  Shame and blame only make a complicated situation heavier.

A friendly word, a simple smile, and a little compassion are lifelines to the parent barely making it from one day to the next.

 

For those of you reading this that barely made it through yesterday and are not sure how you’ll manage the meltdowns today

I see you. You are not alone and your child is not the only one.

Just take the next step and then the next. It’s the only way I know to make it through.

Even better, let’s take those steps together.

 

I’m glad you’re here.
Shawna

 

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23 Comments

  1. My wife and I feel your pain!
    We adopted twin boys at birth and at 18-20 months old they both were diagnosed with autism. I kept it short

  2. Thank you for once again speaking so eloquently. I see and hear you and think you are amazing.

    The picture of your son with Sammy is beautiful.

  3. WOW, echoes thoughts my husband and I have been struggling with lately. AND feeling guilty about too-of course everyone’s life is not as perfect as it looks, but ours sure feels like a MESS with 4 with an assortment of behavioral and cognitive challenges.
    Thankyou for being real, we need each other!!

    1. Yes! The guilt over not being able to pull of what everyone else seems to be able to is so real.
      Thank you for your comment and thank you for being here.

  4. Days on end are exhausting, frustrating & long. Nerves are frayed & tears come easy. Parents of Special Needs Children learn to have a thick skin. At first the stares & looks really got to me, but over the years have learned to do whatever we need to do to get out of a public place. It might be bribery or trying to redirect. It’s never easy.

  5. Shawna, Thank you so much for so sensitively — and precisely — articulating this struggle. Our 5.5 yr old son is gifted and has severe sensory processing disorder. I cannot count the number of times I’ve lamented to my husband, “Every little routine thing is just so hard.” Or the number of times I’ve felt alone, or trying to explain to people who just don’t see what we do.

    Thank you for your candor, and offering light to the rest of us through your struggles.

  6. “Why does every single thing have to be so hard?” I’ve uttered these words so many times. Thank you Shawna! Thank you for bringing to light what so many of us feel. If the rest of the world would just understand. Don’t feel sorry for me, just smile and give me a little compassion. It goes a long way. 🙂

  7. As a parent to two ASD kids, and one high IQ but typical, I can agree everyday is a battle to emotional survival. Our eldest is 31yrs old. Our youngest is 9. After years of living on the front line, we easily weary. I often experience our profound differences observing families with typical children operate. I suppose if one were living in starvation watching someone care-freely eating an apple, my being would thirst in want and my stomach would growl. But they don’t see. My Autism Awareness license plate reads Juj Not.

  8. I too have uttered those infamous words “Why does every single thing have to be so hard?”…. Totally agree it helps if folks can offer a smile and/or compassion when we need it. Today was my 14-year old son’s first day of 10th grade. He followed me around the house all day yesterday, so anxious about today and kept up a constant verbal stream of reciting YouTube videos about claw machine games and whether they accept dollar bills or not. *sigh* Needless to say, I decided it was a good day to just stay home, reassure him about school and leave the errands around town for another day. Hugs to you and thanks for writing exactly what so many of us are going through and/or thinking!

  9. My eyes are tearing up. I hear you, and I can most definitely relate. My son is 21. It is a constant battle with him, he has an explosive disorder besides the autism which makes things very difficult and dangerous. He demands his own way. If he doesn’t want to do something, theres a meltdown. If he gets what he wants and is in control all is well. It is so frustrating. Tears, anxiety and depression come and go….over 21 yrs of this. I love my son so much, but nothing is ever simple. I envy people with normal lives. Thank you so much for sharing. I needed to read this today.

    1. My son is almost 13 and was diagnosed bipolar but they think it’s autism. He also has explosive disorder. It’s so hard with 4 other kids. I just quit my job to stay at home and hopefully things will get better.

  10. I have 3 young kiddos and am just beginning to take in the reality that our challenges are much more than a brief interruption of their childhood. It really seems that this is our actual existence, that we somehow have to adapt to this very different life from what we imagined, from what we see all around us, in the store, on our Facebook feed, at (ever-rarer) gatherings with friends… Y’all, I’ll be honest. I do NOT WANT to be in this club, but oh how much more sad and difficult and lonely it would be to live this without a club to be a part of. Thank you for sharing and connecting us all.

  11. My son is nearly 15 now and I have never had a kind look when he has been having a melt down. I hear plenty of comments of how I should discipline him and even give him a good smack. None of which is helpful. For a while now my son swears when he is cross or hurts himself or just practically any reason. I have tried everything I can think of to try and stop this but he keeps on and it happens alot. Would be grateful of any ideas. Thank you.

  12. I am very comforted reading this. Just yesterday I realized how I am trying hard to “look” put together and realized I don’t fit in to this “messy bun” world. So I made a messy bun today and seemed to go along better with the unexpected loops of the day. As I read this article, I came to the realization that I am the “special needs” person in most of my day. My daughter just wants to be herself, and I am trying to get her to “fit in”. Such an exhausting job when you have the responsibility of making the world acceptable when I don’t even know what the “expected” is… because Costco and eating out all meals brings us to a melt down when my daughter is just trying to be herself.

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