Fear of Regression

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This scares me. Or maybe scared isn’t the word. Worried, concerned, frustrated, and a little sad.

Wilson knew all these answers like the back of his hand last year. (see video below)

He practiced this information with 4-5 different therapists, numerous times a day, across different settings and at home with us over the course of several months.

At Applied Behavior Analysis (ABA) therapy, he does programs like this until they are considered “mastered.”  The only thing is, if we don’t continue to practice, they don’t always remain mastered.

Some things are so much easier for him to learn than others. He has made so much progress, I can’t nearly begin to list it all: some self-coping and self-care skills, using longer phrases, sharing, awareness of peers and his environment, and the list goes on.

But sometimes it’s almost as if the new progress replaces things he has already learned.

He must memorize so much. Like answers to use in conversation like shown in this video.  Spontaneous answers are tough for him; he works hard to “find” that information that he has already tucked away.

During this time of quarantine, change of routine and learning in a new environment, our fears of regression are not about ABC’s and 123’s.  If we aren’t moving forward, we are moving backward. There is no middle ground. For Wilson, regression can look like rigidity and repetition, language and skill loss, and even hurting himself.

One thing for certain is that he is putting the work in, every single day.

When you see him down the line and say something, only to get a blank stare in return, it’s because he likely didn’t understand the question, or cannot find the words to respond. He might repeat the question back to you. You can give him an answer to repeat: “Wilson, you can say, ‘I’m good!’” this is such great practice for him.  I promise he is happy to have your attention and wants to interact with you… he is just still working hard to figure out this whole verbal communication thing.

Clink on image below to view the video:

 

Conversations with a 4-year-old about her Brother’s Autism

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A few months ago my 4-year-old daughter, Charlie, yelled from across the room, “Mommy, look!”

Her older brother, who doesn’t tend to pay her much attention, was hugging her.

She said, “Does this mean he loves me now?”

My heart broke.

Confession: I am a bit of a hypocrite. I advocate for autism awareness and everyone talking to their children about autism and I really hadn’t done it myself with my neurotypical child. We talk about differences and kindness and why everyone we meet is special, but we hadn’t had the “your brother has autism” conversation yet.

Part of me didn’t want to point out his differences to her. She had known and loved him just as he is for her whole life. Heck, she’s been advocating for him since she learned how to speak. I often overhear her saying things like “that hurts his ears” or “he can’t do that” to caregivers and friends.

At the Christmas tree farm this past winter, she overheard me telling my husband about the onlookers when I struggled to calm her big brother during a meltdown. Over the years, my patience has grown in these public meltdown situations, but those burning stares, that part hasn’t gotten any easier.

“I don’t like people looking at he,” she said. Her love for him is so immense. She’s always looked up to him, and somewhere along the line she started looking out for him.

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This was probably around the time I felt like I was raising twins. I remember jokingly saying that several times, usually to address the elephant in the room that was our son’s developmental delays.

Two kids in diapers followed by two little potty-trainers. Both with similar interests and level of attention needed. We were in uncharted territory for years. Including when she slowly surpassed him in some areas. Nothing can prepare you for that.

The twin thing wasn’t funny anymore.

She watched me try to explain something to her brother one day and interrupted with “He no understand you because he’s Wilson.”

Comments like that chipped away at my heart. I knew I had some explaining to do. But I also wanted her to always look at him with that same unconditional adoration she always has. I struggled with telling her something that I knew would be very hard for her to understand versus her just knowing him with her heart like she always had.

So, I waited. I waited for what to say and when and why.

She comes along to drop him off at his special school every day, and sees all his peers, all with autism like her brother. Some look and behave similarly to her brother and some are very different or much older. She sees flapping and hopping and hears humming, moaning, and loud shrieks of joy or stress.

Leaving the school one day, she had a question about one of his older schoolmates she saw screaming that morning.

I told her about how special her brother’s school was, and that all the students there have something called autism. That sometimes her brother screams too because he can’t remember what words to say instead. “They have very special teachers there to help him learn and stay calm,” I explained.

We talked about her book, When Charley Met Emma, about a girl whose body looks different than hers, and she uses a wheelchair. I told her that although you can’t really see how Wilson is different, he is different in his mind and the way he thinks, learns, listens and says things. How he and all his friends do special things to keep their bodies calm, like humming, jumping or self-talking.

“Why does he have optimum? He has it because he not talk?” she asked.

“He has it because everyone is so different, and that is a great thing!” I said. “Just like how you get to wear your pretty glasses, lucky girl.”

She thought for a few moments. “I scream and cry too because I have a hard time, am I going to have optimum?”

“We all do sometimes, sweet girl. We are all so much the same, and our differences make us so special. Do you have any more questions about Wilson’s autism?”

“No, I just don’t want to get optimum.”

“You won’t, sweet girl.”

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Supporting Kids with Autism and Their Families

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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 54 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!) with the exception of “is your child high-functioning?” Who wants to go around with a low-functioning label? 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.

This was originally posted for #autismawarenessmonth in April 2019.

 

World Autism Awareness Day 💙

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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 wilsonsclimb@email.com. We’re putting together a special little something for our guy.

We’re so thankful you are on this journey with us.

The Autism Merry-Go-Round

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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!

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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.

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Bye-Bye Tooth!

 

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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.

Happy Place ❄️

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“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!

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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.”

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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!

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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.

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“I Want Fish!”

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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.)

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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.

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We had a bit of a rough time leaving, but overall it was a great afternoon and I’m beyond proud of him!

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Not sure where he got this pose but how handsome is he?!