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Monday, April 9, 2018

April is National Autism Awareness Month by Susan Sheehey


April is National Autism Awareness Month.


But it’s every day in our house, every month of the year.
Our 9yr old was diagnosed when he was 4.

April 2nd is the official World Autism Awareness Day. Coincidentally, I was sitting in the parking lot of the developmental pediatrician’s office that morning, waiting to go in to have our second child assessed for ASD (Autism Spectrum Disorder).

I understand this month is supposed to bring awareness and acceptance to the world for those who suffer from ASD. And this post is quite different than what I normally share.
But I actually have something important to say.

First and foremost, I love my boys. I will do anything for them.
But I don’t celebrate my eldest son’s autism.
Autism is not like it’s displayed in the movies.
Those are clichés. Or extreme rarities, like the savants.

Our Autism is hard. I won’t go into specifics. That would take FAR too long. Your eyes would glaze over, and you’d probably move on to the next email in your inbox.

But sitting in the parking lot of the developmental pediatrician’s office for my younger son’s evaluation was extremely difficult.
Because I know where this path goes.
We’ve lived it for years.
There is nothing more personal.

My younger son just turned 4. If he does end up on the spectrum, he has completely different symptoms than my eldest son. Different areas that effect how he interacts with the world. Or lack of interaction.
But of all the research I’ve done, everything we’ve experienced, every therapist/ doctor/ expert I’ve spoken to in both the medical field and educational field…

It’s hard to sit in that car and not cry.

But I can’t cry. My son is in the backseat. I don’t want him to freak out. I don’t want him to think I’m taking him some place that will hurt him. Because why else would mommy be crying in the front seat?

April is National Autism Awareness Month. I know many Autism mothers, fathers, grandparents that celebrate it, and enjoy getting to share their lives with the world. I am all for spreading awareness. I congratulate those parents and individuals for having that optimism and that enthusiasm. For reaching that point.

I know even more Autism Warrior parents that do not celebrate it. Because it’s freaking hard. I would use another F word if I could. There are things we see and deal with that is extremely jarring to ‘outsiders.’ It’s heartbreaking. Because the only thing I want to do is help my son lead the most full and loving life he possibly can. Some days, the world is viciously unkind. Some days, the world is just too much, and we struggle to help make it smaller for him, or less painful.

So, for this National Autism Awareness Month, I guess the only piece of advice I would ask everyone is don’t judge. Not the child, nor the parent. You have no idea what these kids are going through, what their parents are going through, and you have no idea what it’s like living
their lives. Don’t make fun. Don’t judge, and certainly don’t apologize.


Try to include. Try to understand. If you can’t understand, that’s fine, too. Then at least, try to
help. Any small gesture. If you see a child having a tantrum in the grocery store, don’t give them
strange looks or place blame. Offer to help the parent. (Not the child, the parent is focusing on their needs). If the parent seems testy, don’t take it personally. It’s weeks and week and months and months of stress coming out at the wrong moment. Honestly, we’re not used to people offering to help.


So, it’s April 10th, now. And he has another assessment (6 total over the course of the month). Here we go again.


I hope you all have a great week.


To all my fellow warrior parents:



4 comments:

  1. All my best to you and your boys. Most of us can't even begin to know what strength it takes to be a parent under these circumstances. You're an amazing mom.

    ReplyDelete
  2. Susan, I can relate. I don't have a child that is autistic but I have a granddaughter that hasn't been diagnosed as autistic but to me shows a lot of traits. She is ADHD, dyslexia, and has sensory overload. I've witnessed her meltdowns at home and try to help my daughter.But many times I think she feels that I am butting in because she isn't a good parent. What I'm trying to do is ease some of her stress. Take some of the load. My hat is off to you and all parents with children with learning disorders.

    ReplyDelete
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