Joy. I want to get it right, explaining this birthday boy to you, and joy is what comes to mind over and over again.
Sometimes fragile but mostly fearless, he’s going to discover, celebrate, and remember every little thing about this big old world.
He finds the joy around him all the time… a spontaneous “moo!” to the cows out his car window and an ecstatic “choo choo!” when we are lucky enough to spot a real-life train.
I know other eight-year-olds might not do that, and that’s okay. Sometimes he celebrates joy in atypical ways or in places you wouldn’t expect. But it’s always there with him, radiating throughout the room.
He is happy in his soul.
We don’t waste moments with worry & comparison. We left that game a long time ago. Wilson is in a league of his own, right where he belongs.
We’ve been rushing this boy to grow his whole life. In true Wilson fashion, it will all be in his own time, and in his own way. Now I see this big eight-year-old in front of me and pray for time to slow down, just a little.
I am so thankful for his joyous energy, his curiosity, and the way his happiness feels like sunshine.
Hoping this year is filled with chasing more trains, searching for the ends of rainbows, and that sense of wonder found only in a child’s heart.
When autism entered my life, I knew nothing about it. Books and the internet provided some information but at times they were also terrifying rabbit-holes to nowhere. No one was talking about autism. Because of this, I think the road to acceptance for many parents with special kids is very lonely and isolating.
It did not take long to realize that there was very little I could control about my son’s autism. We worked hard at various therapies all day long for very slow progress. We still do, and it is worth it.
We built a team of therapists, doctors, and interventionists to help him learn, keep him safe and help us learn to communicate with him.
The more I came to terms the impossibility of completely changing my son’s autism, I decided we were going to change the world instead.
I want the world to be easier for him to navigate through. I want awareness, kindness, acceptance and inclusion to surround him wherever he goes.
I want people to know my boy, to understand him. I know this is not going to be easy. We work every day to do that ourselves.
I want people to know that his favorite color is red. He has never told me this, I just know.
I want children to understand that he wants to play with them, even though it does not always look that way. They need to know that most of the time his words are trapped somewhere deep inside of him. That he is not intentionally ignoring them and that his hearing is perfectly fine. He just does not always understand their words, but maybe they could show him instead.
You see, too many words get all mixed up in his head. But if you take his hand or tap his shoulder and show him the way, he just may follow.
Little friends need to know that he might not share the toys that are precious to him on a particular day because the way he has them lined up and organized is what he depends on to make him feel calm and like all is right in the world.
I want the shock and awe stares during the public meltdowns to disappear. Our meltdowns are not the typical toddler I-want-a-candy-bar kind. They are communication breakdown, sensory overload, all- systems-firing and frightening. I want a stranger to tell me I am doing a good job or acknowledge that being a mom is hard, instead of a judgmental glance when I struggle to pick my child up off the parking lot pavement.
This is where we begin to try and change the world, by sharing one boy’s journey with autism. Let him be your reminder that things are not always as they seem and to always lead with kindness and patience.
They are content (even quiet?) in their car seats behind me as we drive to ABA therapy. We are going on year three of “potty training” (I could call it a lot of other things) with my son Wilson, who is almost five years old and on the autism spectrum. He really pulled one over on me this morning with the new potty sticker chart by managing to sit and pee in the toilet four times more often than he would have on a typical morning, scoring a popsicle for himself as well as his little sister.
Oh well, it’s all about balance, right?
As parents, we all strive for a sense of balance in our children’s lives. There are the usual suspects: screen time, treats, sleep. If you are a parent of a child on the spectrum, you know there tends to be a few more items to add to the daily juggle.
You pack his food for the day (the same food you packed the day before and the one before that). You keep his snacks on hand, knowing full-well you can’t just pop into a restaurant or convenience store and find something he will consume.
You try to get him to taste new things but you also want him to eat. He has inherited your stubbornness and those hunger strikes are brutal for everyone. He knows the difference between chicken nuggets and tenders and how dare you serve one instead of the other? If you buy another brand, size or shape of his precious food he will make certain you regret it.
You sneak eight supplements in while keeping all the gluten and dairy out.
You plan and adhere to a routine (because that’s where he thrives) but also create space for him to enjoy some toddler spontaneity. Allow him freedom but not so much that that he’ll wander off. Let him feed his curiosity but keep this fragile and fearless little human safe.
You let him stim and enjoy scripting off in his own little world, but not for too long, or he won’t let you join him there.
You prepare for the battles you know are coming, like haircuts, dental exams or finishing his food containing aforementioned supplements. You keep a reserve of patience for the obstacles you don’t foresee, like an altercation over his open urine sample (he wanted to pour it into the potty like a “big boy” and I needed to ship it off to a lab in Texas.) Or that time he flushed his soiled underwear down the toilet…
You enjoy the quiet moments and you fear them. If it’s too quiet, then someone is up to something, somewhere.
You teach him “I want” and “no” when you would rather he was saying “please” and “no, thank you”. When he requests something appropriately, you usually oblige because it took so long to get there. In the back of your mind you worry that you tend to give him anything he wants to avoid a meltdown.
You let him struggle. This, this one is the toughest. To wait. While he fumbles into his clothes or attempts to put his shoes on the wrong feet, you take pause instead of jumping in to do it for him. You hold your breath when people ask him questions and he struggles to think of a response, trying to give him a chance before answering for him.
You start to plan for the future, but it’s overwhelming. The unknown is terrifying, so you try to live in the present.
You are his advocate, not just for more, but also for knowing when he’s had enough poking, prodding, testing or hard work. The real balance is knowing you would do or try anything to help your child while having the awareness that you cannot do it all at once.
I know many of us never feel like we have found this sense of balance, but we will never stop searching for it.
*Originally posted in July, 2018 but still resonates today. I am happy to report that we survived potty-training and I get to hear “Thanks, Mom!” so often it melts my heart.*
One clear memory from Wilson’s autism diagnosis evaluation has stuck with me.
We sat in a stark room with no windows. The psychiatrist had brought out one activity at a time, then locked them up in a cupboard once they were done. I vaguely remember a baby, and a pretend birthday cake, and so many blank stares and unanswered questions.
I sat quietly in the corner as they had requested. No jumping in to answer for him or prompt and encourage him. The psychiatrist asked me to call his name from across the empty room.
“Wilson. Wilson. Wilson!”
Nothing. He didn’t even turn his head in my general direction.
He wasn’t distracted by toys, which was the reason I had convinced myself he didn’t usually respond to my calls for his attention. He just casually looked at the doctor, then around the bland room.
It truly seemed like he could not hear me. But we had already been to all those specialists for all of that testing by the time we landed in this office for this autism spectrum disorder evaluation. He could hear perfectly fine.
The psychiatrist asked me to do whatever it is that I do to get his attention at home. So, I said, “Hey buddy!” and eventually walked over and touched his shoulder.
I told her we wondered if he thought his name was “Buddy” since we called him that so often. Maybe that was why he didn’t respond to his name yet.
Hope and denial and acceptance ran murky lines during those first few years.
Fast forward five years, and I must tell you this boy doesn’t miss an opportunity to say “Hi, Mommy!” or run to the door to say “Hi, Daddy!” when he hears his dad’s truck coming up the driveway.
Change happens. Growth will happen. It may look different for each child, but we will all see it, and we will all feel it. We will all go through the phases we cannot wait to get out of and the moments we want to freeze in time.
So proud of how hard this boy has worked for all his growth.
“Wow, there sure are a lot of letters! Each makes a special sound.” ✨
This is scripting (reciting learned words and phrases from movies, books, shows, etc) from a favorite Leap Frog Letter Factory show. Scripting was one of Wilson’s first vehicles for verbal communication and he often still uses learned phrases to communicate today.
So much language coming out of this kid lately! ❤️
The knocking on the wall is a fairly new compulsion. Luckily the dog doesn’t mind, but mom and dad keep thinking someone is at the door. 😆
While motherhood has certainly been my greatest adventure, the vulnerability in becoming a mom, and the mother of an autistic child, has been a substantial challenge for me. I found myself, for the first time in a long time, in need of help. A lot of it. This has never been something I’ll easily admit, ask for, or receive.
Thankfully, I am surrounded by the most patient, kind, and generous humans who constantly offer their support and lift this family up.
Our friends and family and friends who are family, you open your homes to our curious boy to redecorate, climb on furniture, your laps, and shoulders, and oblige him in his relentless requests to be chased in circles. You continually say “hi” and attempt to engage with our little man, even when you know you will likely not hear a response. Someday, he will hear you, and see you, and you will get to see his sweet face light up like never before. You love our children like your own and you will never know what that truly means to us.
His teachers, behavior interventionists, doctors, therapists, and caregivers, you are patient, loving and recognize the little stuff can be very big stuff for him. You remain so calm through the storms. You help us set goals and teach our little man how to crush them.
His little buddies, you have the most innocent, loving hearts. You don’t see “different”, you just see him. You may be few, but you are such an enormous light in his life.
The sisterhood of autism moms and special needs parents, the connection and community I have found in you is invaluable. I know my words don’t resonate with everyone, but they might with you. Hearing your stories of struggle and achievements that come in every shape and size has been a constant reminder to always come back to hope.
All our friends, family, and friends of the family (some of whom I haven’t seen in years), who comment, message, and share our story, you encourage, support, and lift us. When you share our story, you are helping us achieve inclusion and acceptance.
Charlie, aka Sis, you know best how to drive your brother completely bonkers, the exact buttons to push, but you also unconditionally love, include, and protect him. You aren’t afraid to get right up in his face, so he sees you, so he hears you. He feels how much you love him; I promise you.
Wilson’s Daddy, you are strong when I am weak. You always support new methods, diets, and my harebrained ideas but aren’t afraid to question when something doesn’t feel right. You keep him happy and safe, which isn’t easy but is our greatest purpose. You know him and you love him so well. You stand with me, to advocate for him, to fight for understanding, and you remain there through our proudest moments and in our weakest.
My sweet boy. You adore the simple things. You smell, touch, taste and intensely examine. You’ve made me slow down and pay attention, whether I wanted to or not, you need me to. You’ve helped me find patience, and still, I pray for more every single night. You have forced me into a vulnerability like I have never known and shown me all the amazingness that follows such a leap.
You’ve shown us how hard your world can be. Through frustration, pain, confusion, and sleep deprivation, you are still so happy in your soul. You’ve shown me this is not only possible, but also just all a part of this wildly imperfect, beautiful ride.
I don’t think there is a mom out there that hasn’t been kicked in the ass by motherhood a time or two.
Years ago, when Wilson was a nonverbal toddler and Charlie an infant, I attempted to take them both to Target. This was pre-autism diagnosis, and I really struggled to understand and communicate with this boy of mine.
He started getting worked up as I loaded them into the double stroller. As we passed through the automatic doors, he quickly escalated to intense screaming. Everyone stared. I had no idea why he was so upset. His shrieks were so loud, he couldn’t understand a word I was trying to say (or see the bribes I was sending his way). I turned around, wheeled them outside and bent down to try and reason with my frantic child at his level.
That is when his little ninja foot connected perfectly with my jaw. My toddler had just kicked me in the face.
I held back tears as I headed back to the car. Wilson still screaming, the baby was clueless, and we had no groceries to show for the courageous outing.
A man in the parking lot saw me and said, “You’re doing a great job. Being a mom is the hardest… I’ve got two little ones at home.”
I burst into tears.
What he said was nice, but do you know what I heard?
I heard that motherhood is hard, and it wasn’t just me doing it wrong. I heard that I am not weak, unqualified, or unfit for this mom-life thing, which is exactly the narrative I had been telling myself all too often. This job is hard, and beautiful, and messy, and to acknowledge that is normal and to struggle is okay.
I felt seen at one of my weakest moments and encouraged by a stranger.
That man probably has no clue what he did for me that day. How he encouraged a struggling mom and that she still thinks about those words, years later.
Think about how easily you could do that for someone else… your words matter.
Just to be crystal clear, I know there is always a time and a place and commenting on a given situation doesn’t always feel right. Just remember you are capable of being a bright spot in someone’s tough day.
Also, remember that your best is MORE than enough.
I want you to know that everything you do matters.
When you crawl into bed at night, aching from your temples to your toes, know that you have done enough. There may have been no progress made with toileting, feeding therapy or communication today and that is okay.
Your child is safe and so loved.
The weight of hectic schedules, parent trainings, OT, PT and visits with every other MD in-between can feel suffocating.
The research, the meltdowns, the battles over chicken nugget brands and clothing choices, all can withdraw every ounce of patience from your soul.
The smeared feces, the eloping, the pica and other behaviors you watched your friend’s toddlers outgrow. Years later, they remain in your child.
Most days are exhausting and thankless and I want you to know that your child appreciates you, they need you, and they love you beyond measure.
You need to know that.
Your child may not be able to express this, some of you may have never even heard your child call you “Mom”.
But they know you are Mom.
Your child is so grateful for all that you do and would be lost without you. Just as you would be lost without your sweet child.
I want you to know that you are not alone.
When your patience has been depleted.
When you’ve cried behind your sunglasses at a park as you watched your child’s differences come to light.
The loneliness you have felt from the long days spent with a child unable to read your emotions.
The difficult medical and educational decisions you struggle to make.
Know that there are so many of us with you.
We have felt the lows and celebrated the victories, too. We know the fear and the worry you wrestle with daily, and the immense pride you feel over the slightest progress.
I want you to find hope.
Today let’s bask in achievements and forget about regressions.
Even if only for one day.
Let your hope be stronger than your fears. With so many unknowns in the future, know that it’s going to get better.
I know this because we will grow stronger.
We will continue to learn, to advocate, to protect and make certain our children know their worth and just how very much they are loved.
I am so thankful for this sisterhood of amazing mothers today and every day.
Explaining autism is hard. Understanding the complexities inside of my sweet boy can feel like trying to catch and examine the wind.
If there is one piece of autism awareness I can leave you with this month, this would be it:
The next time you are stuck at the grocery store, irritated with the man at the front of the growing line because he keeps chatting with the clerk, think of my boy.
The man might be verbally ruminating about new soda flavors he saw on tv or explaining his frustration that the store is out of the only bread he eats. How it is very important because he eats this bread for every meal in his day.
He may also bring up the triangle-shaped crackers he saw on aisle seven. For him, this is so silly because crackers really should be square.
He’ll fumble with his money. Something that seems so simple for many but for him, this has taken intentional practice. He carefully counts and counts again.
He’ll often adjust his big, bulky headphones. At first, you probably thought he was listening to music, but they are there to block out the unwanted sounds, squeaky grocery carts, fluorescent lighting, beeping registers, that kind of distracting thing.
When he moans, chats to himself, and waves his arms, he is growing more uncomfortable and overwhelmed in this busy place. Moving his body and voice this way helps him stay calm.
Remember by boy.
Because one day, this will be him. While I don’t know exactly how he will behave, I do know he will be processing a lot just to be there.
I know he will have worked hard for years to be in that line alone, and I will be so proud of him for this.
I’ve seen him work harder than most for his entire life just to participate in this world. This work began long before his autism diagnosis at three years old or before any of the accompanying anxiety, sensory-processing disorder, and obsessive-compulsive behaviors were ever put down on paper and filed away somewhere.
So please, remember this blue-eyed boy who loves pirates, music, and square crackers and whose hard work began when he was a toddler. The 1-in-54 whose brains work differently like his, they will grow up, and their hard work will remain, too.
Remember that you do not have to see the struggle for it to be there.
As his mother, I need you to be kind and patient with him. I beg that of you.
“STOP FOLLOWING US, BABY! Why doesn’t he talk? He’s a BIG BABY! AHHH!!! Run!!”
I watched as the two older boys screamed these words into my son’s face at the otherwise-empty playground. They couldn’t understand why a kid my son’s size wouldn’t talk or pick up the clue that they didn’t want him around, even after it was screamed into his face.
My sweet boy had recently been diagnosed with autism. He had limited verbal skills and a spirit so big and bright. He laughed as the words were screamed in his face and continued to chase the boys who wanted nothing to do with him.
The boys’ mothers were deep in conversation at a table across the park. Once or twice, they called over something along the lines of “are you being nice?” and got right back to their conversation.
I can still feel the tightness in my throat as I fought with all my being to not cry. The tears poured down from behind my sunglasses. I stood there alone, praying for the mothers to notice my special boy and intervene in some way. Occasionally, I choked up a few words to try and redirect my little man to another part of the playground.
I had no words that day. I was fragile, still processing this new world of autism and what life ahead was going to look like for my boy. And that afternoon just broke me.
This was the beginning.
Luckily, my son did not feel the pain of exclusion that day. I know it will not be that way forever. He understands so much more than he can say, and he feels so deeply.
Now, I would know what to say, and I wouldn’t wait on strangers to say the right thing for me. But it sure would have helped this mother’s fragile heart if those boys had learned a little about differences, kindness, and inclusion.
April is World Autism Awareness Month. When we advocate for autism awareness, really, what we want is kindness + inclusion. That is what really matters.
Learning about and celebrating our differences and those of others can change everything.