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 email@example.com. 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!
Regression is a real thing.
We, along with so many other parents of special kiddos, are working through the pressure and stress of standing in as teacher, occupational therapist, ABA therapist, speech therapist and the countless other professionals on this team to help our boy make progress.
They ALL, and especially our boy, work SO hard for what usually looks like one step forward and a few back.
Days away from therapy, let alone weeks, is where regression likes to raise a little (or a lot) of hell.
We’re so lucky that our team plans to support our guy virtually during this uncertain time, but we don’t know what that will look like yet.
Today, I got to just be with this happy, healthy boy.
At the end of the day, that’s really all that matters. I know we’ll figure out the rest.
“Wilson HAPPY.” We got to hear this several times in the past few days during our trip up to the snowy mountains, and if that isn’t the best thing in the entire world, I don’t know what is.
This kid is LIVING.
On his own terms, in his way and on his time.
This week, he trusted us to show him something new. With an unbelievable amount of sensory input for him to withstand and communication breakdowns to work through, he did it. He skied!
He climbed higher for each sled ride to go faster, and fell down and got back up more times than I can count. And he loved every minute.
For someone with anxiety that can incapacitate him at times, the stop-the-day kind, I am always in awe of how fearless he is. Just one of the many contradictions in this world of autism.
Like how he can remember the route to his aunt’s house in the next town over, but when someone says “How are you?” he sometimes gets mixed up and replies with “I’m Wilson.”
He’s always working hard, both mentally and physically. His body and mind are truly only at rest when he is in a deep sleep.
When he’s ready, he’s READY and when he’s done, he is DONE so if you are in for the ride with him, then you better be ALL in and on!
We had a lot of sweat and a few tears (luckily no blood!) Meltdowns triggered by communication breakdowns or unforeseen circumstances are so frustrating. It’s really hard to not allow these tough moments to ruin a good day.
This time, they couldn’t.
We travelled with family and friends that treat us like family (something we don’t take for granted!) I watched him grab their faces and examine them with such intent and love. Not a lot of personal space in Wilson’s world. He climbed into their laps, tickled, chased and laughed.
I loved seeing this boy in his element, in the mountains. I’ve waited for this.
That’s where my heart feels most at home, too, buddy.
My boy, may you always be this sweet and curious.
My little man came with me to the bank today, he recognized the parking lot as we pulled in and just KNEW there was a Cabela’s nearby.
He hasn’t been to it since last summer when we went there with one of his ABA therapists and I while we were working on community outings.
We had been to the neighboring grocery store a couple of months ago where he had one of his biggest meltdowns to date. He was saying “Fish! I want fish!” over and over and I had thought he meant the decorative ones on the roof of the store… in retrospect I realized he had in fact wanted to go see the ones in the live fish tank at Cabela’s, the outdoor sports store a few doors down.
So this time when he said “fish!” I knew where we needed to go! He even grabbed MY hand in the parking lot (I’m always forcing an iron-clad grip on him in parking lots for fear of elopement.)
He walked right in and greeted all his taxidermy friends one by one. “Hi, reindeer!” “Hi,turkey!” “Hi, moose!” Ensuring they were right where he had left them months ago.
We had a bit of a rough time leaving, but overall it was a great afternoon and I’m beyond proud of him!
It was a good year for our sweet boy. I might not have said that if you asked me during it, you don’t always notice or appreciate progress when you are in the thick of the hard work.
Only now, as I look back, does it really hit me how far Wilson has come, and how resilient he is with the work he puts in every single day.
He is using more words and visuals and screaming less. He made big strides with biking and tolerated some work with swimming. He had a couple successful visits to the dentist and worked on helping at the grocery store and sitting for a treat at the coffee shop.
And do you see that HAIR?! He put in some major work with haircutting this year and is looking like a total stud. Where did my toddler go?! 😢 Oh, and he learned how to write his NAME!
Wilson faced a lot of changes this year, including switching to a new ABA program and working with many new faces. He was so brave and excited to explore some new territory.
His tribe just keeps growing…this little guy is so loved and supported and we continue to be so incredibly grateful.
We have lots of goals for this kid in 2020 and I know he is going to crush them all. We are excited to watch him dive into more music and art projects – he’s so drawn to these areas and is surrounded by wonderful therapists who are eager to help him explore.
He remains on the move! Watch for this guy climbing, swimming, bouncing, swinging, spinning and dancing in the new year!
click on image below for a quick video recap of his year! 🎥
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.
Check out this HAPPINESS ✨
Once again, a huge thank you to locations that provide Santa visiting hours for kids with sensory processing difficulties. The kind Santas and whoever this totally awesome person was in the bear suit… heart and patience like yours mean more than you know to families like ours.
Wilson was in awe of Santa’s cottage, of course after he checked on a few of the toys that were out of place from last years’ visit 😊#incrediblememory
This kid was absolutely GIDDY dancing with the holiday bear. They tickled and cuddled and Wilson said a completely unprompted “thank you, bear!” When it was time to leave. ❤️ #fullheart
Malls, crowds, lights, lots of noise and unpredictably cause Wilson’s anxiety to rapidly escalate. Without this opportunity in a calm and peaceful environment, we wouldn’t have had the chance to see this wonder and joy in him. ❄️
This absolutely made my holiday season!! I think it made his too 😊🎄
click the photo below for a sweet video! ❤️