Month: April 2015

Autism Awareness: Both of Us

TRIGGER WARNING: Autistic meltdowns and hurting hearts.

….

We are still recovering from a level orange fit on Wednesday.

I wouldn’t call it a meltdown because he was responding to me, but he was still out of control. Manic. Painfully aggressive.

And it makes me think a lot about all of this autism awareness.

Because there are many beautiful things about My Boy.

No more or less beautiful, I believe, than any other mother sees in a beloved child.

But the hardest part for me about having this blog is finding the balance.

How much do we idolize the beauty?

Deny the painful?

When mothers speak about being overwhelmed or traumatized or sick over their children, they are so often attacked.

Ridiculed.

As if their emotions and experiences are invalid.

As if they should always and ever be relishing that their child is autistic.

Here’s a truth for you:  You cannot tell another person what to feel when they experience emotional pain.

We shout from the rooftops everyday to accept our children and embrace their differences and respect their feelings.

And mothers who are doing that very thing are unable to discuss THEIR differences or THEIR feelings and be treated with respect.

It’s a double standard.

It’s hypocrisy.

It needs to stop.

You don’t know what I should or should not feel.

You don’t know what I should or should not think.

I should be able to voice my fears.

I should be able to voice my sadness.

I should be able to be just as respected as my child.

I watch my child thrash.

And hit.

And claw.

And bite.

And bang his head until he has bruises and scratches.

I listen to him scream.

I see his tears and his gut wrenching and heartbreaking meltdowns.

I battle with the gray area between tantrums and meltdowns and struggle with where the lines cross of what he knows and what he can control.

I advocate for him.

I cry for him.

Do I love him unconditionally? Absolutely!

But to say that I am not allowed to wish he had been given an easier life would, in my opinion, render me cold and heartless.

He is a child. And he suffers.

Whatever gifts he has do not lessen the pain that he feels.

Whatever brilliance is in him does not lessen his anxiety.

There is nothing that I can do to give him a pain free childhood.

Do not tell me not to wish I could.

Tell me that these moments that rip apart my heart and soul can be healed by the beauty of the quiet times.

Tell me that the miracle he is can soothe the anger in my core that he must suffer.

Tell me that I am strong enough to wish and hope and pray for the happy times and that all that energy will get me through the bad ones.

Tell me that the things we do have, communication and affection and love, will make up for the things we don’t, peace and confidence and easy days.

Tell me that it’s okay to not embrace the pain.

But to keep embracing him.

Tell me that I may not always feel the way I feel today. About Autism. About myself. About our journey.

Guide us if you can.

Tell me that even if you don’t understand, 

You’ll accept me anyway.

You’ll accept him anyway.

You’ll accept us.

Because he and I?

We are a package deal.

#AutismAcceptance

#AcceptUsBoth

❤️

#SpectrumMom

P.S.

Screenshots of a poorly shot video taken while trying to keep My Boy calm enough to get him somewhere safe. 


And no, it isn’t fun. And yes, it’s important.

 

It Isn’t Your Fault: Thoughts on Disability and Social Responsibility

You’re absolutely right.

It isn’t your fault.

It isn’t your fault that My Boy is autistic. Or that his autism requires intervention to improve.

It isn’t your fault that he didn’t intuitively learn to speak. Or that sign and A/AC and speech therapy and language therapy haven’t corrected his language deficits enough for him to be understood by other 5 year olds.

It isn’t your fault that he lacks self-care skills. Or that he requires Occupational Therapy for toileting and feeding and listening and drawing and dressing and just freaking playing with toys the way that the other kids somehow “instinctively” know how to do.

It isn’t your fault that he lacks muscle strength. Or that he has the “typical” autism physique of skinny, weak arms and legs and that walking long distances is completely beyond him.

It isn’t your fault that he is awkward. Or that he requires physical therapy to learn to keep his balance walking a line or going up stairs or holding a toy in each hand or even sitting in a chair without falling over.

It isn’t your fault that 1 in 5 families are crying out for help when their babies don’t walk or talk or learn the way those Expecting books said that they should.

It isn’t your fault that the numbers are probably higher but because of social resistance and insurance and coverage and services and testing and finances there are children who won’t be diagnosed until they are long past the golden “Early Intervention” years that so many of us cling to.

It isn’t your fault that your children are being forced into classrooms with ours. Or that your children will have to grow up with fewer and fewer and fewer neurotypical friends because the numbers of autism are rising and it looks like we are on our way to taking over the playgrounds.

It isn’t your fault that your children are staring down a 1:3 possibility of having a child on the spectrum.

It isn’t your fault that by the time that they do our kids will be aging out of services.

It isn’t your fault that I won’t have made millions and millions of dollars to support my child after he ages out. Or that part of the reason is because I spent all those years at speech therapy and occupational therapy and physical therapy and behavioral therapy and IEP meetings and advocacy boards and doctor appointments and evaluations and Carter’s for those dang footie pj’s he insisted on wearing 24/7 for 3 years or the diaper aisle of Wal-Mart crying over the cost of the big kids overnights and inserts and then smiling when I found cloth diapers that could replace those inserts and then frowning thinking about how I was going to be washing diapers again and I had always thought diapers were a baby phase.

It isn’t your fault that I live here in the same country as you.

Or that one day I will die.

And my currently-a-half-orphan child will not have anyone left who could possibly love and care and advocate and fight for him 24-7-365.

Because I’m it.

And the rest of the country is too busy standing on your soapboxes saying “It isn’t my fault.”

And you’re right.

It isn’t.

It’s no one’s fault.

We were all dropped here on this planet or sprouted on this planet or left on the planet when the mothership left or whatever it is you believe.

We’re all here.

Together.

It’s not my fault and it’s not your fault.

And it sure as hell isn’t My Boy’s fault.

You’re right.

Until you say it isn’t your responsibility.

And that my friend, is where you’re wrong.

Because one of the things that also isn’t your fault is that we all live here together and somewhere at some point we are all responsible to each other.

Our words and our actions and the way that we live.

We all bear the burden of each other’s existence.

Because we all exist here together.

We all need each other. We all rely on each other.

We all have to face things that aren’t our fault.

And we all have a responsibility to do it.

And a responsibility to be a part of this society.

And yes, responsibility is a hard thing.

And no, it isn’t your fault.

http://www.nbc.com/dateline/video/dateline-april-12-2015/2857335?onid=146591

Autism Awarenesss: The Hard Days

Yesterday was perfect.

I took him to the zoo.

We didn’t have one meltdown.

He is learning to feed himself.

He only bolted while playing on the playground so, all things considered, totally manageable.

He tried to make friends.

He interacted with his surroundings.

He played appropriately at the sandbox in the dinosaur exhibit.

It couldn’t have been more perfect.

More calm.

More beautiful.

We’ve had so few of these outings over the past few years that sometimes I forget, or rather I don’t think about in clear, vibrant ways, that he is disabled.

Yeah, that word so many people don’t like: “Disabled.”

“Lacking in an ability.”

And let me be very clear, My Boy is the Shiz.

But there are things he can’t do.

And I know it.

But I also forget quite often what it’s like to stand him next to a group of children and “compare.”

And yeah, I think it’s an important thing to do.

I need a plan for him. I need to know how far we have come. How far we have left to go.

I need to know goals and what works and what doesn’t.

I need to see so I know.

I saw him running and flapping and doing his “scarecrow dance” onto the playground shouting “my friends are all here” and I watched to see if his simple joy was enough to make friends.

And I saw him playing along with the 3 years olds, mostly able to follow their lead.

And I watched them gang up to hit and kick him.

Was it his size? That he was so much bigger?

Was it that they couldn’t understand his speech or his behaviors?

I saw.

But I didn’t know what it was that I saw.

And then I saw him leave the toddlers, whose games and dances he understood, and I saw him approach the bigger kids his own age.

And I saw them decide to take him out, too.

And running, phone in hand and recording, I saw him.

As if his very existence was billboarding him as an outsider.

As bully-fodder.

As if they could smell him.

Or see a flashing light over his head declaring, “I am different. And vulnerable. Come hurt me.”

And their taunting punches and kicks landed softly, as if egging him on, and were met with his blank, thoughtful stare.

He was so present in that confusing, awful moment.

And then when the ring leader decided to go after him for real, with me running full blast toward them in the sand as slow as a dream, I saw My Boy punch that Kid-Bully in the jaw.

And when Kid-Bully stood stunned, I saw My Boy side kick him ninja-style in the hip.

And down Kid-Bully went.

And My Boy stared at him.

A blank, thoughtful stare.

Hurt.

And confused.

And later in the car I answered My Boy’s questions as best I could.

No. You are not allowed to hit.

Well, not hit first.

Yes, if someone hurts you it is okay to fight back.

Yes, you should come get Momma if you can.

No, you are not a villain.

I know it’s confusing.

I’m proud of you for defending yourself.

And I’m heartbroken you had to.

Why?

Why is a boy who hasn’t mastered potty training and doesn’t know his ABC’s having to learn how and when to defend himself?

Why!

Why is my Boy, who just wanted to make friends, unable to do so in a setting that should be so natural?

Why do I have to hover just to protect him?

I know why.

And it has nothing to do with “Autism Awareness.”

And it has nothing to do with “Autism Acceptance.”

It has nothing to do with special needs or childhood independence.

It has to do with them.

With the highlight-haired and meatball and coleslaw pita sandwich-eaters (ew) and coach diaper baggers standing in line for lunch at the zoo who think it’s okay to laugh and roll their eyes at the awkward teen girl who invaded their perceived “space” as she reached past them to grab a pudding.

It has to do with them.

The moms standing in line for the zoo train wearing their babies.

When their 3 year old points at my 5.5 year old and says “He’s in a baby seat!” And I reply “No, it’s just a stroller.” 

And she ushers her kid around the corner without correction or apology or even a glance to let me know she didn’t know what to say.

Because I know that’s what you told him, isn’t it?

Not considering the needs of others who will need strollers throughout childhood or adulthood, you told him that he didn’t need to ride in a “baby seat” today.

Because trying to foster independence you unwittingly, I presume, taught him that children with other needs are “babies.”

It has to do with them.

The mothers who let their kids mock and bully a child who acts differently and speaks differently.

Because “they’ll work it out on their own” is such a solid parenting plan.

And you could care less who gets hurt.

Until your child gets punched and side-kicked by the autistic boy.

And then you don’t like it, do you?

And then suddenly, in the flurry of emotions I can’t even name and the flailing scenes moving so fast my mind can’t keep up with my eyes, it isn’t about you it’s about us.

And it’s about the fact that I am us and you are them.

It’s about me realizing that raising your level of autism awareness isn’t enough.

Because there will never be enough autism awareness to make you move over so the awkward teenage girl, the only one in the group standing all alone in line, can grab her pudding without being visibly mocked by adults.

There will never be enough autism awareness to teach you that a simple “would you like to sit with us” could have taught others to accept and not reject the teen that was different from yours.

There will never be enough autism awareness to teach you that telling your child “a kid in a stroller isn’t a baby, he’s just a kid” would have made all the difference to the mother pushing the stroller.

Or to the kid in the stroller who understands more than you think, because his stroller doesn’t inhibit his hearing.

There will never be enough autism awareness to teach you that “they’ll figure it out on their own” doesn’t work when one of those kids perseverates on Ninjago.

And he knows the difference between playing and when he is being attacked.

And because we raised your awareness yesterday, didn’t we?

About autism kiddos and side-kicks and the autism Mom that video documents everything.

But it wasn’t enough. Was it?

All that autism awareness.

I know it.

And it hurts.

And it’s sad.

And I know, too that “Autism Awareness” can’t be “Autism Acceptance” until you are willing to be a kind human.

Until you are willing to practice “Human Awareness” and someday, if you possibly can, “Human Acceptance.”

Even if it’s just to help another mom have less of a hard day.

Even if it’s just so that solitary girl knows that people are aware she is just as deserving as the girls standing in line in groups.

Even if it’s just so you don’t underestimate the strength and the fortitude of that kid with delays as he takes out your son on the playground.

Even if it’s just to stop making everything them VERSUS us and you VERSUS me.

Can we start there?

Please?

So that sometime, somewhere, someday the perfect and beautiful day at the zoo will be less of a hard day.

For all of us.

#BeAKindHuman

❤️

#SpectrumMom

The Zoo Slide

Autism Awareness: “Because I didn’t have a choice.”

Mothers are saying “I wasn’t aware I had a choice.”

Mothers are saying “I had no choice.”

“Because he’s my child.”

“Because she’s my little girl.”

No choice.

And I want to climb onto my kinetic sand-covered and paint-splattered dining table and shout at the top of my lungs, “I had a choice.”

Because I did.

I do.

Every day I have a choice.

When I smile and nod and go with gluten-free banana pancakes and organic Gogurt for breakfast, that is a choice. I am choosing to give him food he likes to eat and what I believe is good for him to eat above what I want to eat. Which is always eggs Benedict.

When I jump off the toilet mid-pee because I hear silence and silence is dangerous, it is a choice. I am choosing to put his safety above my own biological needs.

When I sit on the floor and play Batman, which is really just scripting the action with no beginning, no plot and no ending, I have a choice. I am choosing his joy and his choices in entertainment over my own.

When I follow him into therapy and record his progress and make notes of new tests and referrals and note what I see and how he responds, I have a choice. I am choosing his progress over my time and a bit of my sanity.

When he cries in the night and I know they are night terrors and he won’t recall me comforting him and I get out of bed to go in and hold him anyway, it is a choice. I am choosing to try to comfort him even though he may never understand the sacrifice of sleep and the tears that only a sleep-deprived Momma can shed in the middle of the night holding a child who is neither awake or asleep.

When I put his needs before mine and I sacrifice so much that I feel like my soul has faded to gossamer and my body is worn and my face and eyes are tired and swollen until I look in the mirror and don’t see myself because the face in the mirror is his Momma and nobody else, it’s a choice. I am choosing my son over myself.

When I realize that he needs me, all of me, everyday and that there is no vacation or free time or break because this child that needs me needs every breath that I take until I think I can’t breathe anymore, I have a choice. I am choosing to be what he needs and wants and even the things that nobody thinks I should have to be because I know that the more that I am to him and the more that I do for him the better his life will become.

I will not be a victim of fate and though I did not choose the name of the road we are on I’ll be damned if I don’t choose which path I will take.

I will not let the fact there are things I can’t choose make me feel powerless when faced with the the things that I can.

It’s a choice.

You’re a choice.

Every day, every minute, every second.

And there are mothers who won’t and who don’t and the ones who can’t even if they want.

But I can and I will and I do.

Not because I had no choice or there was no other road.

But because when something matters more than anything else I could ever do, then that is the thing I will choose.

And yesterday, today, and every tomorrow until I’m not needed,

And probably longer than that,

I choose you.

#SpectrumMom

I wish I was the kind of girl who…

Me too ❤

Autism In Our House

I wrote a facebook status that said:

I wish I were the kind of person that could be trusted to wear white jeans.

That got me thinking about the kind of girl I wish I was. We’ll tackle that one first. I wish I were the kind of girl that could be trusted to wear white jeans.I love white jeans. And white t-shirts. And white Oxford shirts. And white slipcovers. And white cabinetry. And…you get the drift. I would love a world where I was bathed in breezy white fabrics, but my reality is I can’t get out of the house without a stain of some sort on my brand new white shirt. Let’s be real, they only ever look good the one time.

I wish I were the kind of girl who could wear bangs.I know it’s dumb but it’s more an issue of im not a…

View original post 486 more words

AUTISM AWARENESS: What is ‘autism’?

I’ve been though different stages with autism.

Phases where I knew what autism was.

Phases where I didn’t know what autism was.

Phases where I knew what the autistic in my life needed most.

Phases where I had no clue.

Phases with gluten and fish oil and probiotics and bee pollen.

Because I knew what autism was.

Phases where I didn’t care and just wanted to sell a kidney so that I could buy us a cabin in the woods away from therapists and doctors and the sliding scale of typicality where we could live off dandelions and chickens in peace.

Because I didn’t know what autism was.

And I didn’t know what to do with not knowing.

Phases where I was desperate and manic and stayed up all hours researching instead of sleeping because there was a new study posted online. (NOTE: correlation is not causation. Google it)

Because I’m always looking for ‘’the’’ answer.

And because sometimes I’ll take any answer.

Because I want to know what autism is.

Because My Boy’s autism comes with some scary stuff:

Self-harm.

“Seizure-like activity.”

Bizarre physical reactions to food.

Aggression.

Lost speech and motor and language skills. Lost potty training. Lost self-care and self-awareness. So much loss and re-gain that it’s like living Groundhog Day over and over and over. ”Didn’t we already learn this?” Because, regression.

And bolting.

Bolting is a thing.

We halter. We have Road IDs on his shoes. Labels in his clothing.

Profiles at the local police and fire stations.

And I’m teaching him to say, “My name is Boy. I am autistic.”

Because he can’t recall my name yet: I’m just Momma.

And he can’t recite my number. And I promise you “I live on Boy Street on the planet Mars” is not correct.

But that isn’t all I teach him.

I teach him more important things.

And I tell him more important things.

I tell him he’s wonderful.

And I love him.

And he’s a miracle.

And he’s awesome.

And somehow, in the jumbled up brilliance that is his mind, all of these things make sense.

No one description of him is mutually exclusive.

He is all of these things:

He is autistic.

He is a miracle.

He is awesome.

So today it doesn’t really matter what autism is.

And it doesn’t really matter what autism isn’t.

Not today.

Because “autism” is just a place we go to sometimes.

Me: What is autism?
Boy: It’s a store we go to sometimes.
Me: It’s a store we go to sometimes?
Boy: (Nods)
Me: Are you autistic?
Boy: (Nods)
Me: Yeah. What does it mean that you are autistic?
Boy: God makes us that way.
Me: And what do you think about that?
Boy: It’s awesome.

#AutismAwarenessAndPizza


#SpectrumMom

Autism Awareness: Mom to Mom

5 things mothers of children with autism should know. (From a mother of a child with autism.)

1. Autism is just a group of words. Labels. It isn’t an answer. Or a person.

Take a deep breath.

You will be okay.

2. Coffee.

Then take a deep breath.

You will be okay.

3. Poop.

You will be okay.

Take a deep breath later.

4. You will burn the toast. Overcook the eggs. Forget to brush your teeth. Shave one leg and not realize you have two until much later. Miss a therapy appointment. Forget the iPad. Cry into the fridge holding a cup of coffee when you realize you forgot to buy cream.

Take a deep breath.

You will be okay.

5. You will find an online support community that will keep you from feeling alone while you stare at the screen through slotted, puffy, tired eyes.

And you will become part of a tribe.

And together you will talk and laugh and cry about labels and coffee and poop and exhaustion.

And how very, very, very much you love your babies.

Take a deep breath.

You will be okay.

#AutismAwareness

❤️

#SpectrumMom


  

Autism Awareness: Choosing Joy

There is division everywhere. People disagree. They disagree so strongly that they often overlook the important things in life. Don’t believe me? I seem to recall a recent argument over a white/gold-bronze/gray-blue/black dress.

Do you want to know what I saw? Periwinkle:purple:blue and bronze.

I didn’t fit into any of the major camps.

I also looked repeatedly. Trying to see what others see. Comparing. And I came to a decision: whatever I see is fine. Whatever you see is fine. The differences are interesting, and somewhat curious, but hardly fatal.

So when I write about autism or parenting or emotions or behavior or any of the other things that I think about on a daily basis, I know not everyone will agree.

And to me that’s fine.

Interesting.

Because how I see life and how you see life are different. We are different.

So as you read what I write about my emotions and my experiences please remember that they are my journey and some will agree and some will disagree and some will have to look very, very closely in order to see anything in them they can recognize.

All I ask is that you take the time to look and listen and think before you respond.

Because I am ever so much more delicate than a lace dress.

AUTISM AWARENESS: Choosing Joy

Finding my joy was easier as a child. As a teen. Even a young adult.

The heartbreak of relationships and a dream of being a writer that met obstacles like talent and grammar and platform and self-discipline slowly stole that joy.

Or rather I allowed those things to steal my joy.

Until finding it became very, very difficult.

I don’t know if the way I lived most of my adult years from 25-35 would have qualified as depressed. Mostly it was a kind of pervasive hopelessness. A kind of non-joy.

I didn’t plan on having children.

I had babysat all of my life and I loved the hugs and the songs and the imagination of children.

But I knew myself to be too self-centered and too spoiled to have any of my own.

And I will never forget the sharp rebuttal from someone I had dated who said I would be a horrible mother. To my face. I was walking in a black and white world and some children were in a place I didn’t think was appropriate and because I had authority I used it to demand they leave. I was keeping them safe.

But I was also unflinching. Hard.

Non-joyous.

And as much as it hurt, in that moment he was also right. That would have been a horrible way to mother.

Because children are fragile.

They can be hurt by those they love.

They can become wounded.

Hard.

When I had My Boy I was mostly in awe. Not happy. In awe.

Finding joy was still difficult.

He was beautiful. Perfect.

But I also had a baby boy who didn’t smile or laugh unless he was tickled or running.

He didn’t smile just seeing my face. I had to tickle him to get him to smile for pictures. Which worked, but also hurt my heart.

He didn’t giggle when I talked.

He didn’t coo unless I touched his lips.

He didn’t sleep.

Which means I didn’t sleep.

Until his 4th birthday he never slept more than 2-3 hours at a time.

It was hard to find my joy.

It was hard to be joyous.

I don’t know exactly when it changed, but I do remember before it did. At my lowest.

He was 2.5 and he didn’t talk and he screamed for hours on end and he had night terrors and he ate bugs and by all that’s holy I swear his flesh caught fire every time I buckled him in a carseat.

I was back in college. I had given up writing.

I was majoring in Early Childhood Education.

Because I loved kids but I had no idea what to do with them. Because years of babysitting had made having kids seem fun and I was not having fun. And part of me blamed my selfish nature. And part of me blamed my black-and-white nature.

And the largest part of me thought “This. This is why I shouldn’t have had children. I am incapable. I am a horrible mother.”

So I enrolled in ECE because I thought someone there could teach me what to do.

And they did.

I found a large part of what I needed to learn in the “Special Kids with Special Needs” course.

Screaming. Biting. Hitting. No cooing. No speaking. No responding to his name. Bolting – omg did he bolt. Eating issue. Inability to sit still. Bizarre behaviors. Aggression. Spitting. Lack of ability to play with toys. Lack of eye contact. Which in our case was not lack of eye contact but actually a screaming banshee if you did make eye contact.

Boy: (screaming)

Me: QUIT LOOKING AT HIM. QUIT LOOKING AT HIM!! YOU’RE MAKING HIM SCREAM.

Grandma: I should be able to look at him.

Me: You CAN’T! You are making. Him. Scream.

But there it was. In my book.

And suddenly a little bit of the weight of my own inadequacy started to lift.

And while I knew I might be grasping for straws I also knew that he was textbook. That I could walk down that Autism checklist and put a picture of his beautiful little face right next to each marker.

And over the years my understanding of autism and My Boy’s struggles have been a bit of a rollercoaster.

Because it isn’t just autism.

It’s ADHD. And it’s oppositional defiance. And it’s disordered language.

And it’s me. Not just struggling to find a way to parent him, but to find a way to exist with myself.

To find my joy.

Not just in parenting My Boy or in advocating for him.

But to find it within myself.

Maybe a lot of you started off with joy.

Maybe finding your way back was easier.

But I’d been without it for so long that it was hard.

But it did come.

In bits and pieces.

As My Boy found his voice and as I learned how to communicate with him and as I saw the absolutely heartbreaking beauty in his very existence, I began to find joy in so many little moments that my heart began to fill.

I found joy in the quiet moments before he woke in the morning. So I chose to wake before he did no matter how tired.

I found joy in his laughter. So I chose to tickle him and chase him more so I could hear it more.

I found joy in the peace of prayer. So I chose to pray. Every day. Even if all I could pray was “please.’

I found joy in being strong. So I chose to be strong when I wanted to cry. To be his strength when he had none.

I found joy in being his mom. So I chose to be the best one I could be.

I chose joy.

The rough days are still rough.

But there is a confidence in me that wasn’t there before he arrived.

And while it’s too weighty to put my current, joyful existence on his shoulders, I know that he was the reason I began to test my own strength and find my own joy.

If he wasn’t autistic, I don’t know what our lives would be like.

If he hadn’t struggled at a painful level as a toddler I don’t know that I would have spent hours and hours and hours every day praying for hope and peace and a plan.

If he hadn’t screamed at night I don’t know that I would have stared up at the ceiling in the dark, rocking him, begging God to help me.

If he hadn’t needed me so very, very, very much I don’t know that I would have gotten over myself.

If he hadn’t needed an advocate I don’t know that anyone else would ever have been more important to me than me.

If he hadn’t been autistic, I don’t know that I would ever have fully, completely and as nakedly turned to God.

And found myself.

And found joy.

So when you read about our lives and I speak from a place of love and forgiveness and joy, I want you to know that it was a hard place to find.

It’s a place I have to root myself every day.

It’s a choice.

It’s a need.

And while all these other things are beyond my control and beyond My Boy’s control and while life seems unfair or hard or ugly sometimes, I know now what I never understood before:

Joy is a choice.

Maybe one made out of desperation.

But a choice.

And today, like so many days before, I choose joy.

#SpectrumMom

P.S.

The dress is periwinkle.

P.P.S

Autism Awareness Giveaway posting: See Facebook Letters From A Spectrum Mom for details.

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