Wilson has worked so hard on tolerating haircuts for YEARS. This has been a series of small, very intentional and consistent baby steps. For reference, it began with him tolerating the buzzer to be in the same room as him. Then it moved closer. Then weeks later, it was about tolerating the buzzer to be plugged into an outlet in the room with him.
You can imagine, the actual haircutting steps were even smaller, helping him to very slowly work through his sensitivities and anxiety around the entire process.
Years ago, I would have never believed that one day he would be laughing and singing through a haircut. He has come so far!
Autism moms came together by using their voices this month to demand justice for a child with autism who was abused at his school by a teaching assistant.
These stories are becoming too much. Children with disabilities are all too often being kicked off airplanes, out of restaurants or church, abused at school or in their own homes. Each new story stings as much as the last, like thousands of tiny papercuts while watching the evening news.
With each one, I glance at my bouncy, blue-eyed, happy, innocent boy. How could anyone ever treat a human that way?
With each story, I pull him in a little closer. Silently renewing my vow to protect him from the evils of this world.
The school district failed to hold this abuser accountable, but our voices were heard. The teaching assistant has resigned.
When people come together, change will happen.
The incident prompted one autism mom, a documentary filmmaker, to reach out to us bloggers to submit a photo of who we advocate for in our lives and communities. You can watch the video via the link below.
I am truly amazed by the power of community.
I also believe that ONE voice can make a difference.
Will you tell us who you advocate for? It can be anyone; a child, a student, a relative, or yourself! Tell us one thing that you wish people would know about this person. Post it in the comments below.
I’ll start. This brave boy. I want people to know that people with autism understand so much more than they may be able to express. They are human, they feel deeply.
So be kind, always.
link to video (you may have to copy and paste it to your browser):
This boy just NAILED his blood draw. If you have followed along for a while, you know this has been SO TRAUMATIC for all involved in the past. So much so that I was able to avoid this situation for a few years for him.
This time, we had a phlebotomist come to our home. She was some kind of heaven-sent angel; whose grandson happens to also be on the autism spectrum. She calmly talked Wilson through everything, even after I told her about his limited verbal skills. She continued to talk, letting him know everything she was doing and asking him questions about his life. He didn’t respond or understand most of what she was saying, but I know he felt her calm, kind presence.
The real MVPs today were his incredible teachers, who practiced this process with him for a few weeks. They made visuals, created incentives, and did mock-blood draws with details all the way down to putting on the rubber gloves and bandaging him up afterwards. They made videos to show us so that we could do the entire process at home (remember, practicing across different environments with different people!)
I don’t know who needs to hear this, but things CAN get better. You must try, and then try again. Even if it’s weeks, months, or even years later. Just don’t give up.
I’m so proud of him. I’m BEYOND grateful for the village, the tribe, the TEAM this kid has at his back. And the kind angels he finds along the way.
“People will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
I wish I could feel things the way you do, my sweet boy.
I want to understand.
I didn’t know sound could physically, deeply hurt until you showed me.
I see you fold your precious ears in on themselves, an attempt to mute the overwhelming world. That doesn’t usually work though. So, you quietly, nervously, moan. This slowly grows in intensity and frequency until your shrieking blocks out the unwanted sound or it’s removed. Whichever comes first.
I want to explain to others how you feel inside during these moments. The way your senses hide and seek all the input from the world around you so differently than most of ours do.
Others should know that anxiety and sensory processing difficulties ride shotgun with your autism diagnosis. Together, as a team, they run interference and wreak havoc on your peace. Every hour of every day.
I could tell them that the seemingly small, simplest of sounds are like the proverbial “nails on a chalkboard” multiplied to the nth degree to you. But that probably sounds silly to you. I know you feel so much more than my words can describe.
I want them to know in these moments you need space. To let you moan and shriek. That you can’t hear anything else once you feel this way.
You’re practicing wearing your headphones and we’re so proud of you. But I know this only dulls the sound and you need it to cease to exist in this world before you feel calm in your heart again.
I remember when you were little, we took the batteries out of so many toys, puzzles, and games because they were so distressing. The things we thought you would love made you cower in my lap at times.
I know that sometimes, even familiar sounds or music that make you happy tend to also overwhelm you so much so that you need to block them out just like the other, unwanted ones. I’m sorry it took me some time to understand this.
I see the way you are constantly ready to protect yourself. Like when we visit the horses. They are so big and unpredictable, aren’t they? In those moments of silence, you are ready.
Every day you work on tolerating more. You do this for your sister, your dad, and I. You practice because you have the most curious heart and you want to explore this big, unpredictable world, even though it’s so overwhelming.
You’re so brave.
I’ll never feel the way you do, my boy. But I’ll never stop trying.
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.
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.
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.