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

Because I’m your friend.

“Because I’m your friend.”

Hey, Baby Boy.

I get to call you that because you’re still too young to argue with me. And that makes you my baby. And I have this idea in my head about babies. About children. About the little people that we raise to become big people.

A lot of that idea is centered around the fact that I am religious and that part of my faith I hold most dear is that you, sweet Boy, are not just a boy: you’re a spiritual being whose creation was bigger than your Mom and Dad falling in love and having a baby.

There’s more to you than flesh. You are more than your body.

You are your hopes and dreams and hurts. You are your experiences and your fears and your spirit. You are your imagination and your soul.

I am not your Creator.

I am your Guardian.

And that’s a role I don’t take lightly.

Some call it “mother.”

Some say “parent.”

But to me neither word is enough.

To me I am your teacher, your comforter, your ally, your therapist, your disciplinarian, your pastor, your confessor.

And if I juggle all of them the best I can and if I try my hardest then maybe, just maybe, one day you will call me “friend.”

And that’s the highest honor I can ask of you.

Because these other roles, these hats I juggle and responsibilities I shoulder, you didn’t give them to me.

You didn’t hire me for the job.

You didn’t have a say in who would be your Momma.

You didn’t choose me.

One of the most beautiful things that I’ve learned being your Momma is that, if I had every beautiful child in the world to choose from, I would still choose you.

But what choice do you have?

I pick your first friends and your hairstyles and your clothes and your home and your diet – no wait, you choose that actually – and I choose your childhood religion and the direction I hope you will go as you grow up.

I get to help you become the kind of man I think belongs in this world.

I get to show you the world through my eyes.

I mean, how many kids have moms act out Danny Kaye monologues in the living room?

I shape you.

Your choices will come later.

They will be the final factors in who you become, but I am your impetus.

I did not create you but I do build your foundation.

I do.

So as I think about you and my responsibilities to you I also think about adult-you and those choices you will make one day.

And I think about the popular, well-worn phrase “I’m not your friend, I’m your parent.”

And it hurts the tender places in my heart that your existence has filled to overflowing.

Because, my sweet Baby Boy, the choice that you can make that would mean the most to me in this life is that you would choose to call me your friend.

That you would stand before me as a grown man with a stubbly beard and a deep voice and say I am, and have always been, your friend.

So I do my best to treat you as my friend today.

To be the person you would choose to talk to and look up to and learn from TODAY.

To be the person I hope one day you will be proud of me for being.

I know I’m your mother.

Parent.

But I did nothing to earn those roles.

I want to be your friend, too. To earn your friendship.

So I set up some ground rules for myself.

They are my promise to you.

My contract as your Guardian.

My outline for the shaping of you as the man I am raising.

And I pray that through it I do you justice,

My Son.

My Baby Boy.

One day my equal.

Every day my friend.

I PROMISE:

1. When you cry I will comfort you. And I will teach you when crying heals and when it is manipulation.

Because if you are hurt or sad or lonely or even if you just want to be comforted, then of all the things I can give you in this life, comforting you is the most important.

Because I want you to be the kind of man who comforts others.

But I also want you to be the kind of man who understands the different types of tears.

So that you know when to comfort someone.

And when to step back.

2.  When you come up with a hair-brained scheme I usually won’t go along with it. But I will negotiate with you for a better plan we can both agree on.

Because I don’t want you doing what everyone else does and I don’t want you doing every crazy thing that occurs to you, but I do want you to be comfortable with negotiation and I do want you to have fun.

So remind me tell you about mattresses on the barn roof.

Yes, really.

3. I will do my best to guide you and to show you the kind of man I want you to be, but I will not be the dictator of your life.

Because I do not want you dictating others.

4. When you lie I will call you on it.

And then I will teach you how to tell the truth and I will comfort you as you face your mistakes.

Because I want you to be the kind of man who is not afraid to own his wrongs.

5. When you frustrate me and I feel like hitting a wall or pulling my hair or throwing something or crying I will look at you and remember that your very existence is a miracle.

And I will tell you.

Because I want you to be the kind of man who sees the miracle in life.

And who knows how to contain his frustrations and not take them out on the innocent.

6.  When I believe you are wrong I will tell you. And I will teach you what I believe is right.

7. When I believe you are being hurtful I will tell you. And I will teach you how to be kind by example.

8. When you have given up all hope and your heart is broken, I will tell you about my heart and show you how much hurt it can bear and how strong it is and how any hole it has can be filled.

Because all a heart needs is someone to love.

9. When you are cruel to an animal or a friend I will stop you and teach you how to make amends without humiliating you.

Because an apology borne out of humiliation doesn’t mend anything.

10. I will love you.

When I yell at you. And when I apologize. When I play with you. When I am too busy to play with you. When I promise. When I forget my promise. Or make a promise I couldn’t keep. When I remember this contract. When I forget it entirely. When I am reminded of it and when it rushes over me with the weight of all that it means and all that you are and all that you can and may be.

When I go to sleep at night. When I wake up in the morning.

Because, I’m not just your parent.

I’m your friend.

I’m your first friend.

I’m your truest friend.

And because I’m not just your friend,

I’m your parent.


#SpectrumMom

P.S.

Pic of me and you.

When you really were a baby.

Your Friend

Autism Awareness Month

Autism is quite the buzzword.

We have our own month.

Our own day.

Walks and runs and lightbulbs.

And I struggle with the gimmickiness of it all.

But I also benefit from it.

And so does My Boy.

There are a million diagnoses in our world.

We could be living with any one of those.

We could be wishing that everyone or someone or anyone knew or understood our struggles on ANY level, even the most generic.

We could be voiceless.

But because so many have gone before us, our path is already a path.

Our voices are heard.

Our struggles and our triumphs are televised and memorialized in blogs and documentaries and Tshirts and banners.

While we may choose to forge new paths or we may look to different voices to advocate for us, gratitude for those who first began awareness campaigns is paramount.

Be grateful.

That doesn’t mean you can’t make your own way.

But be grateful that when we say “he is autistic” people have heard the word.

That neighbors have YouTubed Temple Grandin.

That teachers have researched for IEPs.

That therapists have created sensory equipment and mothers have blogged curriculum and doctors have studied causes and correlations.

Be grateful that we are not invisible.

As we start this month, blowing up newsfeeds and mailboxes campaigning for our loved ones, be gracious.

Remember those who still have no advocates.

Remember that no advocacy is ever perfect.

Remember that no parent or child or teacher or therapist is ever 100% right or 100% wrong.

Remember that we are doing this, not to be superior or to demand respect or to get “more.”

If we are doing it for the right reason, we are doing it for him.

And for others like him.

We are doing it to say:

“He’s here.

He’s loved.

He’s worthy.

And we want you to know.”

That, my friends, is Autism Awareness.

That, my friends, is the point of sharing.

And I am grateful for the opportunity.

Happy April.

❤️

#SpectrumMom

P.S.

Pic of My Boy.

In a moment of pure, glorious joy.

#AutismAwareness 

 

I Am Beautiful

To the follower who told me I wasn’t beautiful. 

And who felt I should sensor my self-esteem based on their assessment of my appearance:

Dear person,

I’m sorry you are unhappy. Or hurt. Or damaged.

I truly am.

But let me tell you a few secrets…

First, know that I am not beautiful.

I know that men don’t watch me walk down the street.

I know eating Taco Bueno in the car last time I cried over my son’s struggles was not the right choice for my hips or my belly. Or my backside. Or, or, or.

I know that I spent too many years tanning and the freckles and sun spots mar otherwise imperfect, large-pored skin.

I know that my one beauty is my hair and that when I am stressed and overwhelmed just pulling it back out of the way is too much work so I chop it off.

I’m pretending I’m funky but it’s really just a sensory thing.

I know that little girls don’t look at me and wish they could look like me when they grow up.

I know.

But I also know some other things that you, from the angry, bitter safety of your keyboard or phone, do not know.

I know that the looks I was born with and the ones I might have had with better self-care, are my shell.

They are not me.

I also know that beauty is many things.

There is beauty in my breasts that fed my son for 18 months even though that means I will never wear a strapless dress again.

There is beauty in my belly that carried my son even though I will never wear a bikini again.

There is beauty in my easy smile and even in my too-loud and often grating laughter.

There is beauty in the fact that I have friends who message me in the middle of the night when their hearts are breaking because, if nothing else, I will be there for them.

There is beauty in the fact that when I walk into the lobby of my sons therapy center little girls run and jump into my arms for a safe kiss and a hug and someone to dance to Frozen songs with while they wait on their therapists.

There is beauty in the way I kiss my son at night.

And in the way I sneak back in to kiss him again while he sleeps.

There is beauty in the fact that he knows he can crawl into my bed in the morning before the sun rises and that he will be held and kissed and know security that millions of children do not know.

There is beauty in how I have taught him and am teaching and will continue to teach him that people are more than their appearances, bodies or labels.

There is beauty in me.

So much beauty that when my friends and family and my son see me, they see a beautiful woman.

And there is so much beauty in that, whether you see it or not, that when I take a picture of myself or of “us” I see a beautiful woman.

And I post it for the other beautiful women who follow our journey to see.

This isn’t vanity.

I know I’m not “beautiful”.

It is the self-confidence of someone who has learned how to BE beautiful.

So, I’m sorry you see me through a stranger’s eyes.

I’m sorry you only see that I am not a model.

I hope you stay and get to know me better.

And if you choose not to I understand that also.

Because everyone has a place they belong and their own idea of beauty.

I only hope yours broadens a little bit.

And as it does, and you see more and more beauty around you, I hope you heal.

From whatever hurts I did not inflict, but that someone somewhere obviously has.

Go.

Be beautiful.

❤️

#SpectrumMom

P.S.

Pic of me.

In my bathrobe.

Chilling out and reading emails while my son plays at my feet.

Exactly as I was when I received yours.

Isn’t it beautiful?

P.P.S.

Let’s keep comments focused on attitude and behaviors that share beauty.

I would love to hear examples of how you were a beautiful person today. 

 

I believe

He believes in Santa Claus.
So I promise to keep the spirit of Christmas.

He believes in full body hugs and sticky kisses and snuggles.
So I promise to keep him warm and held.

He believes in tickles and chicken jokes and goofy faces.
So I promise to remember to make him smile.

He believes in popcorn in Momma’s bed and late night cartoons.
So I promise to break the rules.

He believes in big splashes and sparkling bubbles and water guns.
So I promise to remember to get wet.

He believes I’m a princess.
So I promise to let him rescue me.

He believes in loud laughter and squeals and giggles.
So I promise to remember joy.

In everything.

Every day.

Because life is more than the lot we’ve been given.

It’s what we believe.

And it’s what we do with what we believe.

And I promise to remember that.

Because today…

tonight…

this very minute…

He believes in Santa Claus.

And that’s all I need to know.

Merry Christmas,
#SpectrumMom

P.S.
Pic of my Boy. Which is also a pic of 100% pure, innocent, perfect belief.


#iBelieve

Dear NT Family & Friends,

Dear Neurotypical Friends and Family,

Um. So, hey, I just wanted to let you know that… yeah.

I don’t do jealous.

I don’t know why, I just never have.

I’ve never wished I had someone else’s job or car or house or family.

I’ve wished that I had a bestseller on the New York Times… but it’s more of a naptime fantasy than actual jealousy over anyone else’s book.

I don’t want THEIR success.

I want mine.

And I want success for my Boy.

There are a million ways my mind wants to go when I start down this thought-road, so I’ll try to line up a clear, easy to follow map.

And it starts with this: I am not jealous of you.

I am not jealous of your child.

I am not jealous your child is not autistic.

I am not jealous your child is top reader in his school.

Or that she won a state solo contest.

I am not jealous your husband helps with your laundry. I’m not sure how such a thing happens exactly, but I’m not jealous.

I’m happy for you.

I just want to throw that out there.

Because lots of someones are apparently concerned, since I started talking about my Boy’s autism, that they can’t share with me. They can’t brag. They can’t talk about the wonderful, amazing, fabulous things their kids are doing.

Out of kindness and consideration for feelings I don’t have.

But maybe one day I will. Maybe, as my Boy grows and our differences are more noticeable and our struggles more intense, I will have a hard time celebrating with and for you.

But not today.

Today we are living in that soft, gray cloud that floats ambiguously between the storm of pre-diagnosis and the soft, lily white fields of “we’ve totally got this autism thing.”

We are somewhere in the middle.

Where life is manageable.

Where hope is concrete and pain is fleeting.

Where I can share ”us.”

We don’t have it all down yet, but I can see that the tunnel we’re in doesn’t end at a brick wall.

I can see that the very, very rough years we’ve been through had purpose.

And that’s why I’m sharing everything I do. I’m sitting here on Facebook every night talking through my thoughts and feelings. Sharing the hard and the easy. Sharing the laughs and the tears. Reaching out because I know we’re not alone.

I’m not jealous of what you have, I’m trying to share what I have.

I know our life looks very different from yours.

And I’m okay with that.

Because I love what we have. I don’t love that my Boy has to struggle to get through a meal or to get dressed or go to the bathroom. But I love him. I love how he loves me. I love how loving him is turning me into this insane advocate-ish, educated, aware human being.

I love this crazy, messy, stained, saturated life that we have going.

So, I said all that just to say “congratulations, I’m proud of you guys.

You guys are awesome.

Tell me all about you while we’re here.”

And I hope, really, really, really hope, you’re proud of us.

Let me tell you all about us while we’re here, too.


#SpectrumMom

Pic of Me holding my Boy. Who is wearing iLs headphones. At Occupational Therapy.

A Picture I took because after 5 months of his wearing them twice a week he’s finally decided there’s absolutely nothing wrong with putting and KEEPING them on.

Which is a huge triumph.

One of many we had today.

Celebrate with us.

The Value Of Art

Because, Legos.

So.

My Boy has been learning the hard lesson that Legos cost money.

Which means he is learning that momma can not buy every Lego IN THE ENTIRE WORLD.

Which means he is learning about how money is earned.

Which led us to MR. Rogers and a video on artists who sell their work.

(I don’t know. It’s where the google-YouTube gods led us.)

Which led to the announcement that he was a “Super Painter Man.”

Which led to the request for an artist’s hat.

Which led to stripping pants.

(I didn’t know artists cannot wear a hat AND pants. Huh.)

Which led to a dozen giant sheets of blue paint.

So if anyone out there wants to buy some authentic paintings by Spectrum Boy, let me know.


#SpectrumMom

#TryingToBypassSanta
#ChristmasIsAnEternityToWait

Pic is my Boy’s painting, entitled “Bob the Builder because Orange.”