Some days, it feels like we are climbing onto the exact same merry-go-round that we were on yesterday, and the day before that and the one before that. The same music, same speed, same smells, and Wilson would undoubtedly choose the same horse to ride every single time. We continue, round and round, stuck on a loop.
Sounds peaceful, right? Until the song changes, an undesirable sound or image comes into the loop. Or the lights are too bright or too dim. Something familiar is missing, out of place or different than how we left it.
Experiencing these things can completely stop Wilson’s little world from turning.
Sometimes I see them coming, these are same battles we fight daily. Like keeping the lights all on or off (he does not tolerate anything in-between) or which clothes to wear or new food exposure. But there are always new ones, lurking and ready to cause chaos at any moment. Like the time the dog peed on the rug and Wilson lost his mind because the rug was missing.
It’s funny, how something so seemingly predictable as the daily routine in this autism life always finds a way of surprising us, throwing us off course, breaking us down or teaching us something new.
This is what autism does in our world every single day.
To recover from the chaos, Wilson finds a new loop. He seeks comfort in the reliable, the orderly, the routine.
Lining up, counting, reciting, and repetition.
Stimming (repetition of physical movements, sounds, or words, or the repetitive movement of objects) occurs more often when he is anxious or overwhelmed. Sameness calms him. The reliability of numbers and the order they belong in, lining up toys, crayons, apple slices, you name it. This works wonderfully to regulate him.
Until something is missing.
Then our house in turned upside down looking for a red crayon, a puzzle piece, or a train the size of my pinky that is missing from the lineup. A well-loved DVD that has been toddler-handled one too many times, or the red spatula I’m cooking with that he suddenly needs to be back in the drawer with all the other red cooking utensils.
Currently, one of the only shows he tolerates is the movie The Incredibles, but only for the first 8 minutes and 21 seconds. He watches while clutching the remote so he is certain he can stop it at the exact point when necessary. The rest of us would sure love to know what else happens in that movie!
I think he does this to try and memorize it all, so he can interpret it more easily the next time he sees it. So he can predict the music, volume changes, songs, words and actions of the characters. He’s also been taking that DVD cover with him everywhere. To bed, the bathroom, the kitchen table. It’s his new treasure.
One day, this will change. He will no longer tolerate this movie and will have moved on to the next little obsession, just like he has done before. None of us know when or why, it just happens.
It’s fascinating that he uses these techniques to block out other things happening in his environment that are more difficult for him to process. The most common sensory processing difficulty for Wilson is sounds, but it can also be light, heat, stressful emotions, or just over-stimulation.
Similarly, he eats the same foods each day, and I mean SAME, right down to the brand. It’s a real pain when these brands decide to change their packaging or worse, are discontinued. Then there are times when he just stops eating something he’s been eating for years. I suppose even he can grow tired of the unvaried.
Our sameness is unpredictable. But every day, we will buy a ticket, hold on tight, and ride that merry-go-round with him.
In other news, Wilson lost his first tooth!
I knew this was coming and would go one of two ways. 1- He would barely notice, and might not acknowledge it or show me. 2- He would get very upset about the change and want it put back in his mouth immediately.
Turns out, both options were right to assume. When the time came, he calmly removed his tooth himself. We showed him his reflection and cheered and he was happy for a bit and then went right back to what he was doing before. Then he tried to throw the tooth in the garbage.
His sister insisted we write a letter to the tooth fairy, explaining that Wilson would prefer she leave a toy instead of money because she thought he would really like that.
We showed him books about the tooth fairy, but abstract ideas and concepts like this are really hard for him to understand.
He went to bed and I thought that whole ordeal was way easier than I had anticipated.
But then he started sobbing. He was incredibly sad. He doesn’t have the words, but I know what he was thinking. “Where did my tooth go and what’s this big hole in my mouth and why can’t we just put the tooth back right now?”
He finally calmed after his sweet little friend sent him a video, showing him that she had the lost the very same tooth and that it was all going to be okay.
Continually thankful for our (now virtual) tribe!
There was a time when I thought this kid would NEVER, EVER, get a haircut.
Today, we busted this one out in 5-10 minutes with NO SCREAMING! 😱
I’ve already posted about haircut progress in the past, so I’ll spare you all the desensitization details.
Moms and Dads: hang in there if you are dealing with this or other sensory sensitivities, potty training, etc. It will get better.
If you think you are moving slow and taking baby steps, move even SLOWER and take smaller steps. It will be worth the time spent.
Side note: his incentive today was canned green beans 🤷🏼♀️ he wants what he wants! And when I tried to give him a new brand with no salt added, he smelled them and requested “different green beans”. Can’t sneak anything past this stud! 🤣
Also pictured below- our white board where we keep track of stars earned during the haircut and my version of a cup of green beans. 🙌🏻
Also side note: he does NOT stop moving 🌪 but was so happy, I needed to capture it 📸 .
As goes with autism, attempting this cut the night before school pictures could have gone VERY differently!! .
Today was a good day 💙
The R-word is done, guys. Bye! see ya! Broaden-your-vocabulary-never-to-be-used-again. Gone.
Some friends and I went to an amateur comedy show last night. It was really fun until the last comic starting making fun of people with special needs. And used the R-word repeatedly.
I was beyond disgusted that ANYONE would think his jokes were funny.
I came home to see my sweet little guy asleep in his bed and I just fell apart. I can’t understand how anyone could think this perfect little human’s very real struggles are funny.
I’m not going to start listing off all the things my son may never do because of his particular neurological design. That’s a rabbit hole I steer clear of on the regular. But I damn sure hope he is never in a room like I was last night, where people with different abilities were the punch lines.
October is National Bullying Prevention Month and this is a perfect reminder of the roles we play and the influence we have on others.
Everyone laughing at those crude jokes were just as much a part of the problem as the man spewing them.
Stand up for what you believe to be right vs wrong. Use your voice. Use your actions. THEY MATTER. I promise you will regret your inaction more than taking an opportunity to stand up for what is RIGHT.
“I would not change my son for the world. I would change the world for my son.”
I came across this quote the other day and it reminded me: This is why I share my son’s story. There is so much about his autism experience that is out of my control. What I can do is spread awareness and hope that it leads to a little understanding, patience and compassion.
Many people are unaware of the reasons behind some of Wilson’s behaviors. Autism affects communication, social development and sensory processing, with the degree to which these areas are affected being unique to each individual.
Sensory processing difficulties are really hard to understand because the triggers can be invisible to neurotypical people. I am slowly learning more about the triggers and sensitivities in Wilson’s world. He is very sensitive to bright lights and certain sounds. He has left the room screaming or cowered in my lap over noises that a random toy will make.
He is very particular about what clothing he will wear and what foods he will eat. He often studies toys or objects by turning his head completely sideways or upside down. He seeks movement and pressure and likes to bump into people or be wrapped up tightly in hugs or blankets.
He is learning ways to cope with his anxiety and sensory reactions, like chewing on something or taking deep breaths. Sometimes singing a familiar song or counting will help.
Many people with autism find comfort in routines and repetition, just like Wilson. He says things repetitively, plays with toys in the same manner or repeats little scenes over and over. He gets irritated if we take a different route to therapy or home.
His memory is truly incredible.
When his sensory system is overloaded, he breaks down. His first reaction is to scream. His screams have reached an all-new high pitch. He usually becomes limp, hits, or tries to run away. Sometimes he’ll hit himself in the head, slam doors or push furniture down.
People stare and make snarky remarks. Luckily, this only bothers my husband and I. Wilson doesn’t read other’s emotions well or understand the comments. Someday he will though.
So let’s talk to our kids about how all their friends are unique, and that it is a beautiful thing. How we all learn at a different pace, and speak in distinct ways, but can still have so much in common with one another.
All children could benefit from a friend to help them overcome challenges and build confidence and self-worth. Let’s teach them acceptance and inclusion.
Let’s change the world.
Originally posted on April 16, 2018
We are not aware.
“A spectrum is a condition that is not limited to a specific set of values but can vary infinitely within a continuum.”
The autism spectrum consists of millions of unique individuals that do not fall into ONE place on the spectrum. Some are incredibly talented in math or music but do not have appropriate self-care skills. Some have mastered hiding their autistic behaviors like flapping, rocking, or humming, but they continue to have a whirlwind going on inside of them.
We are all aware of The Good Doctor and Rain Man or the quirky, smart kid at school. I love a feel-good story as much as the next person, but I think it’s important to talk about the other sides of autism that are not often seen or understood and certainly not portrayed in the media.
In her article, “My Son Has the Kind of Autism No One Talks About”, Bonnie Zampino, Engagement Specialist and special needs parent, reminds us just how unaware we are of these other aspects of autism:
“The media shows us all of the feel-good stories, like the child with autism who gets to be the manager of the high school basketball team, or the boy with autism who goes to the prom with the beautiful girl, or the girl with autism who is voted onto the homecoming court. We Light It Up Blue every April and pat ourselves on the back for being so aware.
But we aren’t aware.
Because for every boy with autism who manages his high school basketball team, there are 20 boys with autism who smear feces. And for every girl with autism who gets to be on the homecoming court, there are 30 girls with autism who pull out their hair and bite their arms until they bleed. And for every boy with autism who gets to go to the prom, there are 50 boys with autism who hit and kick and bite and hurt other people.
This is the autism that no one talks about. This is the autism that no one wants to see.”
This isn’t about high-functioning and low-functioning. It’s a reminder that “If you have met one person with autism, then you have met one person with autism.”
If you meet someone on the spectrum or a parent to a child on the spectrum, I encourage you to ask them about their child, and what they like to do, rather than try to pinpoint where they are on the spectrum. That’s impossible.
Autism is hard. It can be incredibly isolating. The more we continue to learn, the more aware we will be. Always lead with patience and kindness as you never know what someone else is going through.
Early morning Developmental Pediatrician appointment.
We use visual social stories to help him know what to expect. He did awesome!!
Lunch in the car while listening to the Frozen soundtrack, of course.
Straight to Applied Behavioral Analysis (ABA) therapy.
More Frozen in the car. ❄️
Home session of ABA therapy complete with a little haircut session that he CRUSHED!
Sunshine and dinner with little sis.
Bath and snuggled into his sleep tent.
So to sum it up: work, work, work, work, work. We ask so much of this boy and I am constantly in awe of his perseverance.
I find it so fascinating that someone who can be viewed as so “different” really just craves sameness.
But that’s just one of the many contradictions that lives in this autism world of ours.
Wilson’s obsessive, rigid and repetitive behaviors are sometimes the toughest part of his autism. Often times he needs things lined up, counted, and categorized. Sometimes he is just incapable of adapting or any kind of flexibility in thoughts or routines.
These rituals and need for order help him block out the stuff around him that’s just too hard to process, like emotions, language, stress, and sensory overstimulation.
This is his latest passion: he rolls up his clothes and puts them away in the same spot every time he leaves the house. He RELIES on the fact that they will be in that same spot when he returns. He immediately puts the outfit back on, and rolls it up and puts it away before bed.
We lovingly joke that he’s like Mr. Rogers putting on his sweater when he arrives.
We try to sneak in some washes when he is at school or asleep. He gets VERY distraught if the clothes aren’t where he left them or, heaven-forbid, they get spilled on.
He’s a little Marie Kondo in the making 😉
Click the image below to see the video!
So often we avoid talking about the tough stuff. When someone is going through a difficult or emotional time, many people respond by backing away. They fear offending the person or getting it wrong or not having all the best advice or ability to “fix” the situation. I am guilty of this, even with my closest friends and family.
When it comes to autism, I want to talk about it.
The Centers for Disease Control and Prevention (CDC) says that autism now affects 1 in 59 children in the US. Including this handsome little man right here.
This number used to be 1 in a 1,000.
What does this mean? I am not here to start a debate about vaccinations, or epidemics or finding cures.
What this means is that you are VERY likely to cross paths with someone on the spectrum. This person might be in your very own family or circle of friends, at your children’s school, the neighborhood playground, or the grocery store.
Autism will touch your life.
I want to talk about some ways to support kids with autism and their families.
- Lead by example. Your children see the way you are around people who are different.
- Talk with your kids about autism. When they see a child behaving in a unique manner, draw on the similarities they share with your child. “Look, that boy loves the swings, too!” Your child will find their new buddy to be no less happy, fun, loving, adventurous and interesting as their other friends.
- If a child tries to interact with my boy, he may not respond. He likely didn’t understand the question, or doesn’t realize someone is talking to him. He isn’t intentionally ignoring, and would never want to hurt anyone or make them sad.
- This kind of social interaction is INVALUABLE for him to practice. Children should be encouraged to ask again, try again later, or “give” him the words to say. “Come get me!” “Let’s go!”
- If a child is upset, give them some space. They are likely overwhelmed and/or sensory overloaded so too many words can heighten the situation. Offer a hug, or try counting down on your fingers.
- Some kids on spectrum will repeat themselves over and over again. Children can respond gently with “I need a break” or “not right now”.
- Remember that these kids can hear, feel and understand so much, even if they don’t say as much.
- Don’t be afraid to ask questions (both parents and kids!) except “is your child high-functioning?” Who wants to go around with a low-functioning label? And don’t be afraid if your child asks forward and bold questions! Even if it creates an awkward moment, it’s the perfect moment to spread awareness and I love it.
And to support the autism moms and dads out there, especially ones with newly diagnosed kids, remember that you don’t have to fix anything. Just listen.
Autism mom and writer, Diane Dokko Kim, said it so well: “We will do the talking. There is so much in our heart that’s conflicted. We need a safe place to unpack it. You know what I really need from my friends? Just come and bring the emotional barf bag, I will fill it.”
When we sit in pain or struggle to unpack emotions, sometimes we just need a friend to sit with us.
Thank you for continuing to learn about autism, now I want you to talk about it too! Start a conversation, with your kids, your friend, your neighbor, your bartender, etc.
You are helping us spread kindness, inclusion, connection, understanding, patience, and so much love.