Monthly Archives: April 2020

Change the World

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When autism entered my life, I knew nothing about it. Books and the internet provided some information but at times they were also terrifying rabbit-holes to nowhere. No one was talking about autism. Because of this, I think the road to acceptance for many parents with special kids is very lonely and isolating.

It did not take long to realize that there was very little I could control about my son’s autism. We worked hard at various therapies all day long for very slow progress. We still do, and it is worth it.

We built a team of therapists, doctors, and interventionists to help him learn, keep him safe and help us learn to communicate with him.

The more I came to terms the impossibility of completely changing my son’s autism, I decided we were going to change the world instead.

I want the world to be easier for him to navigate through. I want awareness, kindness, acceptance and inclusion to surround him wherever he goes.

I want people to know my boy, to understand him. I know this is not going to be easy. We work every day to do that ourselves.

I want people to know that his favorite color is red. He has never told me this, I just know.

I want children to understand that he wants to play with them, even though it does not always look that way. They need to know that most of the time his words are trapped somewhere deep inside of him. That he is not intentionally ignoring them and that his hearing is perfectly fine. He just does not always understand their words, but maybe they could show him instead.

You see, too many words get all mixed up in his head. But if you take his hand or tap his shoulder and show him the way, he just may follow.

Little friends need to know that he might not share the toys that are precious to him on a particular day because the way he has them lined up and organized is what he depends on to make him feel calm and like all is right in the world.

I want the shock and awe stares during the public meltdowns to disappear. Our meltdowns are not the typical toddler I-want-a-candy-bar kind. They are communication breakdown, sensory overload, all- systems-firing and frightening. I want a stranger to tell me I am doing a good job or acknowledge that being a mom is hard, instead of a judgmental glance when I struggle to pick my child up off the parking lot pavement.

This is where we begin to change the world, by sharing one boy’s journey with autism. Let him be your reminder that things are not always as they seem and to always lead with kindness and patience.

We are so thankful that you are here with us!

family

On World Autism Awareness Day our incredible friends and family came together (while apart) to support our boy by showing us their BLUE for Light It Up Blue, a worldwide autism awareness event.  This video will make us smile forever. So thankful for all of the amazing people on this journey with us!

Click on image below to view the video!

Autism on Paper

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Seeing it on paper has been one of the more difficult parts of this autism journey.

The first developmental pediatrician we took our son to gave us an “Active Problem List” that was a mile long:

Global Developmental Delay

Mixed Expressive/Receptive Language Disorder

Childhood Apraxia of Speech

Impaired Social Interaction

Hyperactive Behavior

Anxiety

Toilet Training Resistance

Sensory Processing Difficulty

He was three years old. I didn’t know where to start but I knew we could work on all of it.

Autism Spectrum Disorder

The first time I saw his autism diagnosis on a piece of paper, I sobbed uncontrollably while sitting at a conference table, mostly full of strangers.  You hear about mother’s intuition and “gut feelings” and people will ask you if you saw this coming.  None of that made a difference.

That experience is something I have struggled to put into words for years. Fear, sadness, grief… these don’t even come close to encompassing it. Truthfully, I don’t even want to put it into words.

This was only the beginning. Over the years, evaluators, doctors, therapists, while all well-intentioned, are constantly rating, judging, and assessing my child.  Some things feel wrong, “they don’t know him” we think to ourselves. Some sting, they cut my breath short or keep me up at night. The end-product never feeling like a summation of my boy.

On a few occasions now, I have had to fill out a 30+ page questionnaire covering everything from “Can he use a spoon without spilling?” to “Does he want to kill himself?”

These words get tucked away in file cabinets everywhere: school, the county, therapy, a few pediatrician’s offices. But the weight of them never leaves us.

Anxiety

Self-injurious Behaviors

Aggression

We continue to carry them.

How do you ever get used to these words?  For their sting to become dull?

Medical Incident Reports

Property destruction

Elopement

For special needs parents, the line between acceptance and determination is a blurry one.  We maintain an ironclad grip on these heavy words, these “problem lists”, until we decide in which category they are going to land.

Over time, we loosen our grip and let some words go.

Public school

Organized sports

Music lessons

Sometimes, when we let go, we make room for something better to come along.  Adaptive sports, music therapy, and amazing interventionists who help your child practice sitting in a restaurant and safety in the community.

The heaviest ones, we continue to carry those. We make it our mission to send those words into the fire one day, for them to cease to exist in our children’s lives.

Anxiety

Self-injurious Behaviors

Aggression

We, along with our children, will continue to carry the weight.

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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.