Raising a Child with Autism – You Are Not Alone

During the years surrounding Wilson’s autism diagnosis, I could barely say the word “autism” out loud.  

I thought I would just break down every single time and, frankly, I didn’t have time for that. To be clear, this had nothing to do with shame.  Not one day has gone by that I am not immensely proud of this boy.

That Dumbo went everywhere with him back then.

It was about fear, worry, the unknown, and all the other bumps along the road to acceptance. All a parent could ever want is for their child to be okay.  Autism has a way of tricking your brain into questioning if that will be the case.  There is so much to learn and understand before some of that uncontrollable worry begins to fade.

I threw myself into research. We got on waitlists. I began on the path to truly knowing this boy.

And I wrote. I got it all out. Everything that was too hard to talk about at the time.  Processing this kind of information is not easy, and it can be very lonely. This is a big reason why I am here, sharing our story. I never want other families to feel the same confusion and loneliness that we felt in the beginning of this journey.

It has meant so much to me to connect with other autism families, some who are going through the steps to a diagnosis or have a child that was recently diagnosed, and other parents of children of all different ages and abilities.

The main message I want to convey to all these parents is that there will be MANY times that you will feel alone in this, but you do not have to be.  I constantly must remind myself of this.

I cannot tell you how many situations there have been where my knee-jerk reaction was that no one knows how this feels.  The same battles, day in and day out, the medical incident reports, medical and educational decisions, the moment I saw AUTISM written on paper in an evaluation about my boy. 

I’ll tell you there is not one thing I could tell my fellow parents of children with autism about our life that would shock them. Seriously. The fears, the frustrations, the meltdowns, and all the “inappropriate” behaviors we’ve faced. They GET it.  They also get how big some of the simple, small victories truly are as well.    

Things can still be hard for me to process a lot of the time. Sometimes it seems easier to sit alone with the tough stuff. If you do this, please don’t stay there long. Let someone sit with you.

Find your own way to work through your thoughts and feelings. They are real and should not be ignored.

Talk to someone. You might find this safe person in a waiting room at therapy or the pediatricians office, on the playground, or online.  If all of this sounds impossible and overwhelming because you can’t even say “autism” out loud yet, that is okay too! It will get easier to talk about and then you will be ready to lean on others.

The best way for your friends and family to learn about autism and support you as a parent raising a child with autism is to tell them. Tell them about your child. Tell them about your struggles, your child’s struggles, strengths, passions, victories, and all the things.

They might not understand exactly how you feel, but they don’t have to. Sometimes talking through things just leaves you feeling better. I promise your people want to support you and celebrate with you and your child, you just have to let them.

I’m not saying you have to wave your autism awareness flag as loudly as I do. We all do this life differently. Find a place that makes you feel supported.

I am so much stronger than the day I walked out of that psychiatrist’s office with my son’s diagnosis in hand.  My whole family is. If you would have told me this back then, I may have not believed you.  

My boy is always growing and evolving and most days it feels like autism is always one step ahead of me.  It’s like trying to catch and examine the wind.  There is still so much unknown to wrestle with.

While I may never understand everything going on inside of this complicated boy, what I do know is that I will never stop trying, and it helps to know there are so many people here rooting for him.

Flashback to right around his diagnosis. This picture captures pretty well how it was going! Baby Charlie’s face gets me every time 🙂

you are a good parent

“… You’re not in control of what life throws at you, you are in control of the fight.” – Rachel Hollis

Truth: It has been a little rough over here. And I know a lot of families are feeling it too. A little Monday motivation (ok and a lot of self-talk) coming at you…

You are a good parent.

Whether you choose to send your child to school, therapy, a neighborhood cohort, daycare or homeschool.

Or maybe that choice was made for you by state and county regulations.

There are no right or wrong answers right now. Only the path that’s best for your family.

You are enough.

Remember this as you head down this new, unknown road. As you prepare for the balancing act of your life and gear up to fight for continued support and services for your kids.

You are stronger than you know.

If you ever doubt this, look at your kids. Their strength, adaptability, and resilience and just how far they’ve come in their short time on this earth. Then get back in the ring.

We’ve got this.

For Families With Children Who Are Newly Diagnosed With Autism

I am so grateful to have connected with so many new families who have children with autism or are going through the process of obtaining an autism diagnosis for their child.

In 2018, I was asked to share my advice for families of children newly diagnosed with autism as part of a video series for Finding Cooper’s Voice.  I wanted to share this video here in hopes it may help some of you on your journey.

It is a new road, but parents, hang in there! You are about to find strength you never knew you had and become the most fierce, amazing advocates for your child!

YouTube link to the video below.

Our Children Are Not Less Than

When it comes to disgusting comments and disgraceful humans, I try to avoid sharing the things that give them air, life, and room to breathe. The notoriety. The truly hurtful stories and events, I want to hide those from my fellow parents of children with disabilities because we do not need that in our life.

Sometimes though, I just cannot.  

Across the country there has been so much chatter about the re-opening of schools. As parents, we are all anxious, stressed, and concerned for our children.  This is no reason to start tearing one another down. To devalue any child or their education to make room for others. 

Now this, a MOTHER truly devaluing other children’s lives. Upset that the children in special education classes in her district are returning for five days a week vs. her child only returning for two days a week, she posts this on social media: “The kids that are going further in life aren’t the special ed kids sorry to say but it’s the truth. Also when I say special I mean head banging, screaming, throwing fits special! My child is going a lot further in life than those children and should be the one going five days a week not two. If you don’t like that truth I don’t know what to tell you!”

In another district, a KINDERGARTEN TEACHER posted on Facebook: “I’m so tired of hearing about special needs kids.  They’ll be fine. They were (SLUR) before COVID and they’ll still be (SLUR) after.” The rant and slurs continued. He, deservedly so, is facing dismissal. 

I am broken-hearted that there are these kinds of disgraceful humans out there. It is truly absurd. Raising and educating children at that.

Another mom of a child with autism suggested that these people could benefit from spending a day with our children, that maybe that experience would show them how and why this world is more beautiful with children like ours in it.

I say they don’t deserve to. I also know they couldn’t do it.

They couldn’t manage the screaming, the medications, the atypical communication, the anxiety, self- injury, and elopement.

No, they couldn’t do that. 

And certainly, they would miss all the wonder of seeing this world differently.  The pure and simple happiness found by dancing with your shadow or chasing butterflies.

They would not notice the grit, determination, and resilience a boy like mine brings to the table every single day to work through communication differences, sensory processing difficulties, and self-regulation obstacles.

Would they join him as he cautiously studies, touches, smells, and examines the world around him? Could they share in this six-year-old’s love of pirates, eggs, paper, and The Beatles?

Do you think they would get to feel that happiness found by joining his world just for a few rare moments? Like when he is busy scripting and reciting and realizes you have learned the script, too?  The way he looks at you, as if saying, “Welcome, it’s so fun here!”

No, I don’t think these people can hear the unsaid like that.

Something also tells me they cannot give more when there is nothing left. Conjure up patience when it has been depleted. No, that is something they would learn from a child like mine.

Oh, the places he will go. I am sorry they are missing that.

Autism on Paper

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Seeing it on paper has been one of the more difficult parts of this autism journey.

The first developmental pediatrician we took our son to gave us an “Active Problem List” that was a mile long:

Global Developmental Delay

Mixed Expressive/Receptive Language Disorder

Childhood Apraxia of Speech

Impaired Social Interaction

Hyperactive Behavior

Anxiety

Toilet Training Resistance

Sensory Processing Difficulty

He was three years old. I didn’t know where to start but I knew we could work on all of it.

Autism Spectrum Disorder

The first time I saw his autism diagnosis on a piece of paper, I sobbed uncontrollably while sitting at a conference table, mostly full of strangers.  You hear about mother’s intuition and “gut feelings” and people will ask you if you saw this coming.  None of that made a difference.

That experience is something I have struggled to put into words for years. Fear, sadness, grief… these don’t even come close to encompassing it. Truthfully, I don’t even want to put it into words.

This was only the beginning. Over the years, evaluators, doctors, therapists, while all well-intentioned, are constantly rating, judging, and assessing my child.  Some things feel wrong, “they don’t know him” we think to ourselves. Some sting, they cut my breath short or keep me up at night. The end-product never feeling like a summation of my boy.

On a few occasions now, I have had to fill out a 30+ page questionnaire covering everything from “Can he use a spoon without spilling?” to “Does he want to kill himself?”

These words get tucked away in file cabinets everywhere: school, the county, therapy, a few pediatrician’s offices. But the weight of them never leaves us.

Anxiety

Self-injurious Behaviors

Aggression

We continue to carry them.

How do you ever get used to these words?  For their sting to become dull?

Medical Incident Reports

Property destruction

Elopement

For special needs parents, the line between acceptance and determination is a blurry one.  We maintain an ironclad grip on these heavy words, these “problem lists”, until we decide in which category they are going to land.

Over time, we loosen our grip and let some words go.

Public school

Organized sports

Music lessons

Sometimes, when we let go, we make room for something better to come along.  Adaptive sports, music therapy, and amazing interventionists who help your child practice sitting in a restaurant and safety in the community.

The heaviest ones, we continue to carry those. We make it our mission to send those words into the fire one day, for them to cease to exist in our children’s lives.

Anxiety

Self-injurious Behaviors

Aggression

We, along with our children, will continue to carry the weight.

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