The Autism Merry-Go-Round

wilson juice pic

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.

animal lineupBWStimming (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!

Wilson incredibles

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.

swing bw

Bye-Bye Tooth!

 

Wilson first tooth 2

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!

 

All That Matters

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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.