Autism Awareness Day

Autism Awareness Day: A Letter to the Woman Who Cut My Son’s Hair, And A Letter To Myself.

Yesterday My Boy got a haircut.

Haircuts are a thing. Many parents both on and off the spectrum struggle with them.

Our struggle isn’t just getting through, it’s the possible negative scenario if he can’t get through.

Out of fairness and kindness I do my best to prepare anyone cutting his hair that, should things go wrong, there is no need to be afraid. I’m 2 inches from his shoulder. My hand is within touching range. I’m right here.

I’m here for him, but I’m also here for you.

Because My Boy has needs that you, a stranger, will be unlikely to help with.

That isn’t because you are ignorant or selfish or uneducated.

It isn’t because you are cruel or judgmental or indifferent.

It is because my child is not your child.

You do not know his favorite foods or his favorite colors or his warning signs or his hopes or his dreams or the Christmas list he is preparing to recite to the Easter Bunny or how, in our home, that all makes perfect sense.

So to expect you to understand his sensory needs or his meltdowns or the years of behavioral adjustments that I, as his mother, have had to study and learn and re-learn, doesn’t make sense to me.

I don’t expect you to see him and respond to him as I do.

So I took him to you, a stranger, yesterday to cut his hair. I thought you were a charming, sweet young woman. A beautiful African-American with long, delicate fingers, you made every effort to calm my son and make him comfortable while you cut his hair. You moved slowly and carefully around him reassuring me that his jerky movements and tics were perfectly fine. You checked on him repeatedly. Made certain that hair didn’t get in his eyes. Arched your tiny arms over his head so that you wouldn’t interrupt his field of vision so that YouTube Kids on my phone could continue to keep him in the chair.

And you asked questions.

Concerned, friendly, uncertain questions.

Questions that I haven’t answered in a long time.

Questions like “What is a meltdown? I don’t know what that means.”

And I had to look at you. A sweet woman, a mother and hairstylist who sees countless people coming and going in her day, and realize that I have become so enmeshed in autism that I had forgotten people still don’t know.

When I write or speak about autism I do so from my own level of understanding.

When I answer questions, I use terminology that is the autism equivalent to Christianese: Words that only those in the ‘’circle’’ understand.

Words like

meltdown

and OT and PT and SLP and IEP

and spectrum

and severe and verbal and non-verbal

and sensory processing.

And autism.

Yes.

“Autism.”

Really.

To millions ‘’autism’’ is a son or a daughter or a brother or sister or cousin or friend’s child.

It is a documentary.

It is a blue light bulb.

Or a puzzle piece.

Or a blog post.

But to millions and millions and millions more it is an unknown.

Maybe frightening. Maybe a curiosity. Maybe nothing but a word.

And if I can remember this, if I can remember that if you don’t live autism or experience autism or work with autism or write about autism, then I will remember that you are the person I desperately need to reach during this time of awareness.

You are the person that I need to remember doesn’t daily (or hourly) differentiate between meltdowns and tantrums.

You are the person that I need to remember maybe can’t understand that our lives are different from yours in so many ways and yet so very, very similar because you simply have never had the opportunity to be made aware.

Most of my opportunities to meet you will be in the aisle of Wal-Mart where my screaming child is flailing and I am asking you to stand back while doing my best to safeguard him while handing you an awareness card while sweating and hot-flashing and wishing I had made a shorter grocery list.

And maybe you will be receptive or maybe you will be confused.

Maybe you will understand and maybe you won’t.

But sometimes I have opportunities like this.

Beautiful, quiet moments with a beautiful, quiet soul.

Where you can touch and see and listen to My Boy.

Where you can ask and be answered.

And feel safe to ask and be answered.

I am aware of autism.

24 hours a day, 7 days a week, 52 weeks per year.

I am always aware.

Because my child is autistic.

Spending that 15 minutes to help make you aware in a safe and kind manner will reverberate through my memories off and on until they begin to dissolve and finally to fade into other moments of awareness. I know because I know there will be hundreds and hundreds more.

But that 15 minutes with us gave you an opportunity that, if I had been closed off to it, may have altered or ruined your understanding of autism forever.

Or, worse yet, may have simply never happened at all.

Should advocacy for autism stretch beyond simple awareness?

Of course.

I absolutely believe so.

Should I understand that simple awareness is the first step and is still absolutely necessary?

I absolutely believe so.

And that is why I am sharing here what I shared with you.

So that more like you will have a moment, however brief, to be made aware of a disorder that is affecting 1 in 68 children.

To be made aware of a disorder that some consider a gift and some consider a curse but that all affected consider a matter of importance.

Aware that 1 in 68 children means we should all be aware.

You don’t have to be aware at my level. It’s okay that you don’t know what OT/PT/SLP/IEP/504/SPD/OMG mean.

But if you can ask and see and know the basics, then you are aware.

And I am grateful for that.

Because our lives will be more beautiful and more comfortable because of it.

And maybe one day, if you do see us at Wal-Mart, you won’t need the awareness card.

Because you’ll already be aware.

“Fancy,

A meltdown is similar to a tantrum, but at a much more intense level. You know how with a tantrum if you give in and give the child what they want they stop tantrumming? Because they were really throwing a fit for something they wanted? It was a manipulation.

When My Boy is having a meltdown he can’t stop. You could give him what he wanted and he would be unable to calm himself.

He can hurt himself. He can hurt me.

He can be completely unaware of anything around him.

It can be because he wanted something. That can trigger it.

Or it can be triggered by a sound or a smell or a flashing light. Because sensory assaults can physically hurt him.

Or it can be because he can’t communicate his needs.

He’s 5.5 and he’s sitting here talking about Minecraft. But he could be thirsty and unable to process he is thirsty and begin screaming because his throat is parched and doesn’t know how to ask for a drink. And it hurts. And all he knows is that he has a need and I’m not meeting it. But he doesn’t know how to tell me he has a need. Because with autism, being able to speak doesn’t always mean being able to communicate. And not being able to communicate can really, really hurt a child.

And he could have a meltdown if I can’t anticipate his signals.

If I am listening for words instead of looking for communication.

It’s confusing.

There’s a lot to know. There’s a lot I don’t know. There’s a lot I am just now learning.

It’s okay that you didn’t know. That you weren’t aware.

But I’m so, so, so grateful that you asked.

That you were brave enough to ask.

That you were curious enough to listen to my answer.

And that you were kind enough to care.

Thank you for joining Autism Awareness.

Thank you.”

#SpectrumMom

P.S.
My Boy.

At OT (Occupational Therapy).

At ST (Speech Therapy).

Telling the Easter Bunny he wants the blue Ninjago Space Ship Lego Set from his Christmas List for Easter. If Santa could be so kind to send it with the eggs and chocolate.

All post-haircut

One comment

  1. After losing my daughter in 2004, my husband and I thought we would never want anymore children. God saw differently. Before Drake was 1 year old I suspected Autism and it was confirmed almost 1 year ago. Despite all that, I find so much joy in this child. My daughter suffered a lot before she went to be with Jesus..Drake is so happy and loves being alive..even with autism. He is a blessing and brings me joy every single day.

    Like

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