We participate in Light It Up Blue to celebrate our boy and all of the hard work he puts in every single day.
Autism will touch your life. You will interact with people on the spectrum in your community, your workplace, and in your children’s classrooms.
That is why we share our story. To help spread awareness, understanding, acceptance, inclusion and kindness so that everyone impacted by autism can find some more compassion and patience along their road.
Our hearts are FULL seeing all the photos roll in of you all in your BLUE!! Keep them coming, friends! You can text, post on social media or email them to firstname.lastname@example.org. We’re putting together a special little something for our guy.
We’re so thankful you are on this journey with us.
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!
As a parent to a toddler on the autism spectrum, birthdays were hard. Seeing my son around his peers was a very loud reminder of just how old he was and where he was developmentally.
In those pre-autism-diagnosis days, we attempted all the traditional birthday festivities that a typical child would enjoy and our son wanted nothing to do with any of it. We couldn’t get him to open a present, listen to the “Happy Birthday” song or even look at his cake, let alone taste it. He ignored all of our friends and family and their birthday well-wishes.
My friends would tell sweet stories about words their children were saying and I would completely miss the cuteness and celebration of it all. I was stuck on the fact that those children were talking and my boy wasn’t.
I was jealous and then I felt guilt and anger about that jealousy. So many ugly emotions.
One year we really didn’t want to do anything to celebrate his birthday. It’s so frustrating when something that is supposed to be fun ends up overwhelming and upsetting him.
Parents: if you can relate to this, I want to remind you to hang in there.
Over time, our son has shown us that birthdays should not be hard or sad. Or remind us of his delays. He has shown us how to best celebrate him, and that it’s OK if that doesn’t look “typical”.
This past year, our little six-year-old had the best birthday celebration to date. Friends brought his favorite things: old keys, wooden treasure chests and tons of other pirate paraphernalia.
He was so happy.
He still didn’t eat the cake, but he did request the birthday song multiple times and all of our friends and family indulged him in several rounds of the tune. The look on his face while we sang to him was better than the byproduct of any cookie-cutter birthday party I had imagined in years past.
Attending his peers’ birthday celebrations was and remains a whole other ball game. Our little guy doesn’t understand this it isn’t his day. He believes candles should be blown out and presents should be opened, simple as that.
We’re navigating these events more smoothly with visual schedules and a lot of planning ahead. This usually means bringing his own candle along so he can blow it out and staying for a brief visit before he gets overwhelmed. Knowing what is ahead is huge – we don’t want to be bothersome to the party-planners but most often need to know the details for the sake of EVERY invitee’s enjoyment.
We’ve learned to not only try new things, but to revisit old tactics that may have not worked the first time around. Keep trying all the things: silly, practical, innovative and traditional.
I can’t tell you how many times things have gone differently than I expected them to. These moments often times felt like a failure. Now I know they were just stepping stones to get us where we need to be. It’s all worth a try to make our boy feel strong, calm, and happy.
Progress will happen. It just might look different than you had imagined. Be careful not to miss it.
Your child will grow and change. And you will too.
You will learn how to best celebrate them in a way that is so incredibly special to them. It doesn’t matter if they aren’t interested in the latest Marvel characters, sports teams or Disney princesses.
I will celebrate my little pirate and continue to round up old keys for him forever if that is what endlessly fascinates him and makes him happy.
Now, we celebrate BIG. No more comparisons. Our boy is in a league of his own, right where he belongs.
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 💙
“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 “autistic 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 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: April 16, 2018)
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.
“Do you need to borrow my belt?”
This is the “helpful” offer I received from a man today while I was desperately trying to coax my son off the ground and out of a full blown meltdown in the middle of a busy grocery store parking lot.
What this man couldn’t see was that my son has autism, and we have been practicing going to the grocery store 1-2 times a week for the past month. Most visits have been successful, today was not. We were at a new store and out of routine, which is so important to him.
We had been to the bank prior, which had an absurdly long wait, during which my boy laid on the ground, totally fascinated with the cracks in the grout between the tiles. People stared but he was quiet and happy so it was a successful stop. We moved on to the new grocery store and he did great during the brief visit, and then we had a communication breakdown on the way out.
Here’s the thing. You NEVER fully know what someone else is going through. If you catch yourself judging or making assumptions about a stranger, STOP. You are probably, maybe, sometimes, often or always going to be wrong.
Be kind. Be helpful. Or be QUIET.
You know what WOULD have been helpful? If he had offered to carry my bags, told me to “hang in there” or BOUGHT ME A BEER because I obviously needed one or three. Implying my boy was simply short on discipline was enraging. And sad. And disappointing.
I fumbled with my son’s visual schedule and tried to get down on the hot pavement and reason with him but he was too far gone. When there is risk of him hurting himself, I have to physically intervene. Which, SPOILER, he does not like.
I told my three-year-old daughter to hang on to my shirt and I scooped up my almost-six-year-old and carried his flailing, screaming body through the parking lot. He kicked me, kicked cars (sorry!) and hit himself. It wasn’t pretty.
I’ll tell you it hasn’t gotten much easier over these past few years having all those eyes on us in the heat of these moments, and that comment did not help. I know exactly where he should stick that stupid belt.
This kid is so resilient though. Someday I will be too.
Besides mourning the loss of the stickers he scored at the bank (they were a casualty of the scuffle) he has moved on and is back to his happy self. And here I am still blood-boiling over it. Which is so silly, the whole ordeal was much harder on him. He couldn’t communicate his needs or his frustration and was abruptly physically removed. He never even noticed the bystanders.
I learn so much from this tough little cookie and am so proud of all the work he puts in. You can bet we’ll be back at the grocery store next week.
I honestly never pictured actually getting to this point. If you have a kiddo who REALLY struggles with haircuts and/or other sensory processing difficulties, slow and steady changes can make all the difference. We’ve been working on our haircutting program with very specific steps for over a year now.
We created a program within his ABA therapy that included steps performed by different therapists and us across different locations EVERY SINGLE DAY.
The first step was him allowing the clippers to be in the SAME ROOM as him. This took time to work through, as he would scream and attempt to flee when he saw them.
Next step- allowing the clippers to be PLUGGED IN while in the room with him. You can bet he noticed the difference!
At this point in the process I seriously wondered if we would EVER get to a point where we were actually CUTTING hair!!
Many, MANY steps and progress/regression followed. Slow, steady and consistent steps made all the difference. Trust the process.
Now, he sits down and puts the cape on when it’s time for a haircut. No screaming, no covering his ears (we started with headphones and have grown past the need for those) and barely any flinching or squirming.
Where we struggled:
The incentive has to be enough and what it is will likely change. He’s smart and when he would decide he didn’t feel like working on it- we had to up our incentive game!! (You guys- this doesn’t have to be HUGE. For the haircut above 👆🏻 he really wanted green beans. Find what works for your kiddo at the time!)
Only do a little bit each day- don’t get excited and push too far.
Trust me- they’ll remember next time!! Keeping each session brief will make them more willing the next time.
Oh yeah, and DON’T GIVE UP!!