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):
We heard this phrase often in those first months after Wilson’s autism diagnosis. We were trying to wrap our heads around this world of autism in which our son was living. It’s a fairly simple phrase, which was almost refreshing given the complexities of this disorder we wanted so badly to understand. We’ve since learned that for us, autism is in the moment. It’s unpredictable. Some days it is two steps forward, and one step back. It’s phases you cannot wait to get out of, and moments you want to freeze in time. It’s taking the long way. Routine and Repetition. Pure innocence. Unconditional love and loyalty. It’s falling down and getting back up.
Wilson is a typical boy who loves being tickled and chased. He’s into anything that involves jumping, bouncing and spinning. The faster the better. He loves music, building, blowing out birthday candles (it doesn’t matter whose birthday it is), and dressing like his daddy. He loves anything and everything to do with pirates, trains and keys.
What makes him so different? This is where the wonderful comes in…
He is absolutely enamored with his shadow and reflection. Sometimes his mind and senses are so overloaded that he quite simply needs to be wrapped up tightly in a hug.
He says, “You’re welcome!” whenever someone on the television says “thank you.”
Scripting (reciting lines from movies, books, songs etc.) was Wilson’s first major vehicle for speaking. He could recite scenes from his favorite cartoon and sing songs before he could say “mama”.
Eventually, Wilson learned to use some of those phrases to communicate in his day-to-day life. When he wants you to read him a story, he’ll hand you a book and say “Once upon a time…” Every time he finishes in the bathroom he’ll say “Fantastic! All done!” with his arms in the air.
Much of his speech started as echolalia (repeating what he hears, verbatim.) When I would say, “bye, Wilson” he would reply, “bye, Wilson.” Echolalia is a common way for toddlers to learn and practice language, however, children with autism can have echolalia much further into childhood. There were times it felt as though he would just repeat me forever.
While tucking Wilson into bed one night, I said “I love you” and he replied, “I love you, mommy.” Mommy. He added that all on his own. He wasn’t just repeating me anymore, he was beginning to express his own thoughts and responses.
That one single word fed my soul so much hope that night. It seems so simple, but for him, it was a remarkable step. I remember every single moment of that exchange, and it was nothing short of wonderful.
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.
I want to thank each of you for being here. By following along with Wilson’s journey and learning more about autism, you’re helping us in our mission to make the world a more patient, kind, and inclusive place to be and that means so much to us.
One of my hopes in starting this blog was to connect and relate with other autism families and help them not feel alone. The support we have found from this incredible community in return has been all that I didn’t know I had needed.
While I much prefer to talk about my sweet boy, I do love a good name-with-face, or in this case, name-with-a-voice connection so I wanted to share a little about myself, the writer/voice here at Wilson’s Climb.
I’m Lauren, Wilson’s mama, pictured here with the rest of our wild crew: my husband David, and Wilson’s little sister, Charlie. Watch for more on dad and sis in the coming months!
Some fun facts about me:
I majored in Journalism and Spanish. When Wilson was completely non-verbal, I used to have dreams where we would talk to each other in Spanish. It was like we had found the missing piece, the connection, and could communicate with complete ease. I’m so excited for that day to come.
I’ve jumped out of an airplane. Surprisingly, once the cord was pulled, that was the most peace and quiet I have ever felt in my life. I am not that brave or reckless anymore.
I love long walks with friends, candles, country music, and afternoons spent at the winery. Now this is starting to sound like a dating app bio so let’s get back on track…
I used to own two ice cream shops. When I drive by them now, I think about all my blood, sweat, and tears that are still in there. Small business owners are some of the most hard-working, persevering souls out there, especially right now. On the day Wilson was born, I was in my hospital bed while on the phone with the credit card processing company because our machines were down that day.
I’ll admit I have a shoe and graphic t-shirt obsession. Some say I have a graphic t-shirt for every occasion. I can’t help it! I love words. They mean something and they start conversations.
I used to be an adaptive ski instructor. I got to teach people with diverse abilities from paralyzed veterans, to children with Muscular Dystrophy, Tourette’s Syndrome, or hearing/vision impairments. The mountains and the slopes are my happy place, and everyone should be able to experience them. This passion of mine also influenced the name of this blog.
I think seeing yourself in your kids is both amazing and terrifying. My daughter is going to be a handful (remember how I jumped out of that plane?!) and payback is hell. My mom reminds me of that. And my grandma reminded her of that when I was young.
Becoming a mom and autism mom has been the most vulnerable experience of my life. It has been a heart bursting adventure and heart aching at times.
I reevaluate sharing my precious boy on such a public platform all the time. The world can be big, ugly, and mean. I always come back to the realization that Wilson has changed me in the best ways, and he just might do that for others.
He has so much to share with the world. I’m just his voice, for now.
We miss so many people and places. We’ve slowed down, just like everyone else in the world. Work, school, and therapy schedules have been reimagined or discontinued.
But we’ve also learned more about each other. We’ve danced, sang, and giggled more. We’ve rushed less. We’re trying to be more intentional and live with more gratitude, so we are sure not to miss the moments of joy, especially amid the chaos.
The JOY of this season through their eyes is the best thing on earth, and I know it will carry us well into 2021.
Wilson has been singing so much lately! When he sings, it’s the most we get to hear that sweet little voice of his and I adore every bit of it.
Memorizing songs, phrases, or scenes from shows and movies, and counting has always seemed to come naturally to him. His memory is incredible. Because of this, using learned phrases to communicate with us and others has been something that has continued to grow and expand over the years. He still communicates mostly in 1-4-word phrases, but lately he has been using so many new ones.
Numbers and songs are always the same, this makes them reliable in his mind. They are always in the same order and tune; the predictability is comfortable for him to return to.
He likes to listen to the same songs (and watch the same shows), repeatedly, so that he can learn them. He seems to pay attention and learn every piece of them, the tune, the timing, the words, the varying voices, the stops and pauses.
Spontaneous and functional language is much more difficult for Wilson to retain and access. Even when it’s something he has learned and practiced. Sometimes, questions need to be presented the exact way he has learned them for him to be able to recognize them.
For example, he knows the answer to “What’s your name?” is “Wilson.” But if someone says, “Hey little guy, tell me your name!” He likely wouldn’t understand what is expected as a response, or that he is even expected to come up with one.
Just like every year on his birthday, we work on the new answer to “How old are you?” To him, he already learned that answer!
This boy’s hard work continues. He is such a little warrior. There are so many ways this guy brings joy to those around him. I tried to capture some of his favorite tunes here to share!
Every morning for the past several weeks, Wilson has come into our room, shut our closet door that was left open the night before, goes over to our window and says “There’s the moon!” and repeats this, until one of us says, “Yes, that’s the moon!”
He eats the same breakfast every single day. He has for years. He chooses clothes from a handful of t-shirts and pants he will tolerate, often fighting for the same ones he wore the day before. He will undoubtedly change into his favorite outfit when he returns home. He requests the same songs on the way to school each day, and different ones on the return trip.
Many of us have passively used the term “OCD” (obsessive-compulsive disorder) as an adjective to describe a clean or controlling person. I’ve done it to. Seeing what rigidity and actual OCD behaviors look like in my seven-year-old has been incredibly eye-opening. His rigidity has slowly and steadily become his biggest roadblock to progress over the past several years, especially when it comes to learning in any kind of group environment.
These kinds of behaviors run deep, they are very real and mean so much to him. They all serve a purpose.
Let me explain.
Rigidity, in some form or another, has always been present on Wilson’s evaluations, treatment plans, and goal documents since the beginning of this autism journey.
From his view, everything is regimented, down to the way he plays with his toys. Over the years, I have watched these behaviors go from preferences, to strong preferences, to persistent preoccupations to full blown obsessive-compulsive behaviors.
He depends on order, routine, and sameness to feel calm.
Wilson has a plan for almost everything. He expects certain lights to be on, certain doors to be closed, and most certainly his familiar foods to be served. He smells his sandwich when I give it to him to make sure I didn’t switch the brand of bread. For most meals in his day, he requests a sandwich (always cut the same way) with two pieces of additional bread. He cannot have one without the other.
Unfortunately, some of his very favorite foods we only buy occasionally, or we must hide them because he obsesses over them so much. The obsession isn’t just in consuming the food, it’s where the food is put away (he constantly returns to check on it), who else is touching and eating it, and of course, dealing with it running out. It’s heartbreaking to not provide something that he loves but at the end of the day, sometimes is just isn’t worth the stress it puts on him and us.
In his mind, things belong in a particular place. If he finds that something is out of place, he cannot move on with his day until it is corrected. This becomes problematic when the item is something one of us is using, or a toy his sister or peers are playing with. Sometimes we make a point to wash his clothes or sheets while he is at school, because depending on how he is feeling that day, those items out of place can be very difficult for him to work through.
When you hear about people with autism struggling with change, it is often things like this that may seem simple and small to most. A favorite shirt that’s missing, an empty box of crackers, or the salt and pepper shakers out of the cupboard.
We are constantly working on his flexibility and adaptability. Baby steps in an understatement. When sensory sensitivities are involved, change must be slow and very intentional. He has worked programs with Applied Behavioral Analysis (ABA) therapy in areas like this over the course of several months to years. We practice a laundry program where he puts the clothes in the washer, then the dryer, then back to the closet. We talk through it the whole time, assuring him that the clothes will end up back where they belong.
We cannot challenge him in all these areas at once. Can you imagine how overwhelming that would be? A new brand of bread, his favorite tune unavailable on the way to school, only to come home to find the sheets off his bed, his sister had moved his toys out of their line up, and someone had eaten the last slice of watermelon?
We work on a little each day. One day at a time.
Some of you might wonder why. Just let him wear dirty clothes and eat watermelon all day! Truthfully, sometimes we do. We pick our battles. But this is just the beginning. He needs to learn to adapt and be flexible with his plans and his thinking. He needs to learn to cope with sensory input that isn’t ideal. Why? Because I want him to be able to participate in this world and be comfortable beyond these four walls. Where sometimes the lights need to be on, and the doors wide open.
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.