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 🙂

autism, anxiety, and lost time

One of the most unreasonable, exhausting, and heartbreaking sides of my son’s autism is his battle with anxiety.  Sometimes anxiety falls under the ever-broadening umbrella that is Autism Spectrum Disorders, and sometimes you face anxiety as one of many comorbid diagnoses.

In our world, anxiety is the fierce sidekick to autism. It’s the root of things like self-injury, aggression, and property destruction.

It is also the thief of time.

Anxiety is the reason you will not find our family in line for a ride at Disneyland, a photo with Santa, or even a burger and fries.  No line, anywhere. Waiting is hard and waiting in unfamiliar environments is when anxiety seizes the opportunity to creep in and serve up an emotional and physical beating until my sweet boy is missing from behind those bright blue eyes.

What I would give to crawl in there too, to fend off this awful intruder for him. To remove all the pain and confusion and just leave behind the unique, beautiful wonder.

We have found some alternatives, like Sensory-Friendly Santa appointments.  You learn to adapt.  I have accepted that some places in the world are just not for us.

At least not for right now.

But I would be lying if I didn’t say that I sometimes wish we had a perfectly curated family photo at the local pumpkin patch.  We went the other day, my two kids and I, and after disrupting all the other families there with my boy’s bloodcurdling screaming (he really has found a new pitch), my attempt to carry him out looked more like a curated kidnapping was underway.

Here’s the thing: a kicking, screaming, fight-or-flight meltdown looks a lot different in a seven-year-old than it does in your typical toddler I-want-a-candy-bar scenario.

When Wilson was five, we both sat in the middle of a busy hospital lobby, sobbing. I could not move him. I had given up until a guardian angel in the form of a nurse offered to help us.

Sometimes we spend hours on meltdown and recovery over something as simple as clothing or food. These are moments, hours, and days that we will never get back.

The thief of time, you see.

These kinds of days can take it out of you in every way imaginable. You boil down the goals to giving him space and keeping him safe.  Sometimes you just want the day to end so that tomorrow can be new, and hopefully different. And just maybe the world won’t be too much for him then.

Here’s the part of our picture I want to paint very clearly: my boy is happy.  He is kind, gentle, finds joy in the simplest things and then radiates that happiness throughout the room. He is also fearless, brave and works hard every single day on regulation and communication.

A little contradictory? I know, I am confused too.

We cannot control when anxiety will show up, how long it will stay and what it will leave in its wake.

We try, but this is just one of the many unpredictable parts of this autism journey.

What we can do is continue practicing coping and regulation skills, even if sometimes that means getting out of our comfort zone, so that one day, you will see us waiting patiently in a line somewhere.  

We can also soak up the happy moments and continue to celebrate all the small victories, because really, they are all big ones to us.

never give up

There is much going on inside of this sweet boy right now.

We’ve had a rough week. One full of behaviors so unpredictable they leave you quietly planning ways to never leave the house again. The world is just too overwhelming for him sometimes.

Today is a new day though. Wilson felt calm and regulated, so I felt brave.  We ventured out to the bakery. This little man did amazing, he even kept his mask on the whole time.

Thanks to nevergiveup.org for the important reminder.  It’s always worth trying again, when the time is right.