For Families With Children Who Are Newly Diagnosed With Autism

I am so grateful to have connected with so many new families who have children with autism or are going through the process of obtaining an autism diagnosis for their child.

In 2018, I was asked to share my advice for families of children newly diagnosed with autism as part of a video series for Finding Cooper’s Voice.  I wanted to share this video here in hopes it may help some of you on your journey.

It is a new road, but parents, hang in there! You are about to find strength you never knew you had and become the most fierce, amazing advocates for your child!

YouTube link to the video below.

quarantine + autism

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Oh, quarantine and autism. You have been a doo-ZY!

You would think we would have embraced this socially distant period like all the autism memes suggested at the beginning of this lockdown. “We’ve been social distancing since before it was a thing!”

No.

These past few months at home have allowed regression to creep back in, distressing my boy at a whole new level. I knew it would, right when we said goodbye to his routine back in March. It was inevitable. Unfortunately, that expectation did not make these months less painful for any of us. Especially this sweet boy.

Months of quarantine has meant the loss of so many hours a week of in-person, face-to-face time with our entire support team. The people we lean on and draw advice from constantly. I have continued to see some of them over zoom almost every day, but Wilson will hardly notice or engage with them.

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Awareness of surroundings has often been a struggle for him. Sometimes he is so intensely focused on an object or activity, the rest of the room, the rest of the world, falls deep into the background. So, you can imagine spending hours a day trying to draw this little man’s attention to a computer screen for zoom therapy sessions was rough.

Why did we try? Because this isn’t about falling behind in the world of ABC’s and 123’s. It is about attending and listening so that he can learn in an environment beyond 1:1. It is about co-regulation and self-regulation so that he doesn’t hurt himself. It is about word comprehension so he can use them to get his increasing needs and preferences across.

We had been working on safety in the community for years. We were practicing sitting to have a juice box in a coffee shop and running short errands. He started attending an inclusive gymnastics center and began private music lessons. We had hopes of him joining us at a restaurant eventually. Wilson even went on a little field trip to the library with his classmates. I remember when all these things felt so out of reach. Now it feels like we are back there, reaching.

wilson walk

Wearing a mask is likely off the table for this sensory-sensitive kiddo. Physical distancing is just not in his personality. He wants to be close, kiss, cuddle and climb all over people. The number of visuals and social stories needed to deter all these behaviors… is daunting.

He’s a little lost right now. He spends much of his day drawing, scripting and repeating, searching for the order and regulation that he craves. We are a little lost right now. That’s what regression does. It breaks down connection, communication, and patience. In this unpredictable world that is one thing we autism families can usually count on. The highs and lows. The rollercoaster. The progression and regression. Where there is up there will be down. I am not trying to be negative; it is the simple truth.

In the past I blamed these dramatic shifts on gluten, food dye, screen time, the moon, barometric pressure, you name it. This eventually morphed into change of any kind. I had to find a reason beyond autism.

He wanted to give up on the zoom therapy almost daily. Eventually so did I. But we didn’t. I will never stop helping him find his words instead of him screaming. I will never stop sitting with him and being his calm place to regulate his little body, so he doesn’t hurt himself. NEVER.

never give up

Whenever I think my job is exhausting, I remember how hard this kid works every single day. He does not give up. He has shown me what it means to be resilient.

We are heading into a two-week break from therapy before he transitions back to in-person with his peers in July. In the meantime, we are looking forward to spending more time in his happy places. Long walks, riding bikes, hours spent exploring the creek, playing with leaves, and searching for treasures.

wilson creek

Autism Dad Life 💙

Nailed it!!👏🏻🎉 Earlier this year, I posted a similar video, same questions but Wilson had all the answers mixed up. I was worried and a little sad because it was all information he had known for a long time.

In many cases, if we don’t continue to practice certain vocabulary or conversational skills, he has a much harder time accessing this information he has already learned.

His daddy has been practicing with him every night before bed 💙 and he’s getting it down again!

We’re so thankful for this amazing man’s patience, persistence and love. And above all, keeping it all fun! Happy Father’s Day

The TikTok Autism Challenge – Parents: We Can Do Better

Bullies are bored. 

In the recent “Autism Challenge” videos on TikTok, users are shown mocking people with disabilities, specifically using sounds and gestures to mimic those with autism. These people are making fun of kids like my six-year-old son, and I am not okay with it.

What is funny about someone struggling to get their basic wants, needs and feelings across? Someone who cannot say when their stomach hurts, or that they feel hungry, tired, or sad?

ASD longsleeves

The people shown in these disgusting “Autism Challenge” videos take simple things like communication for granted. They are at home making videos about how people like my son move, jump, flap, bounce and dance to express themselves. We are supposed to laugh and be entertained? Well, we are not.

And let me tell you, we are not bored.

We are struggling. The safety of routine in my boy’s world was ripped away by quarantine, something we have found impossible to explain to him via visuals or a social story.

We are here, listening to the piercing screaming, working on food therapy, language development, self-care, co-regulation, and self-calming skills.  We continue to work on safety in our home with hopes to get back to working on safety out in the community soon.

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We are here, painfully watching a six-year-old battle anxiety.  We are his calm in the storm of aggression, self-injury, and fear.

This kid is not bored.

He puts in work, all day, every day. He is resilient. He is tough. He is smart, curious, brave, gentle, kind and he understands much more than he can say. He has more heart than these mindless TikTok “Autism Challengers” probably ever will.  

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Thankfully, for now, these videos break my heart, not his. 

It completely devasts me that he will eventually cross paths with ignorant people like this.

We need to do better.

I am talking to my fellow parents. The most appalling part of this video challenge was the parent’s involvement. Some were behind the camera and some were even participating in the mockery.

We need to teach our children that their words and actions carry weight. They affect people, they can hurt people.

We need to show our children how to stand up and use their voice when they see people mistreated.

Inaction is easy. When we advocate together, change will happen. 

born rad

 

 

Autism Is My Superpower

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This little stud lost his tooth yesterday. He didn’t show any of us when it happened and we have no idea what he did with the tooth. Sometimes he is so calm and matter-of-fact. A real no-drama-dude.

My friend Courtney made this shirt for her son and all of the super kids like him and Wilson. You can find them in several colors on her site at  https://ourcreativepowers.com/ if you want one for a child in your life.

When did my boy become so grown up and handsome?!!

To the Mom of a Child with a Disability on Mother’s Day

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I am thinking about you today.

I want you to know that everything you do matters.

When you crawl into bed at night, aching from your temples to your toes, know that you have done enough.  There may have been no progress made with toileting, feeding therapy or communication today and that is okay.

Your child is safe and so loved.

The weight of hectic schedules, parent trainings, OT, PT and visits with every other MD in-between can feel suffocating.

The research, the meltdowns, the battles over chicken nugget brands and clothing choices, repeating “first/then” all day long and the endless search for missing treasures can withdraw every ounce of patience from your soul.

The smeared feces, the eloping, the pica and other behaviors you watched your friend’s toddlers outgrow.  Years later, they remain in your child.

Most days are exhausting and thankless and I want you to know that your child appreciates you, they need you, and they love you beyond measure.

You need to know that.

Your child may not be able to express this, some of you may have never even heard your child call you “Mom”.

But they know you are Mom.

Your child is so grateful for all that you do and would be lost without you. Just as you would be lost without your sweet child.

I want you to know that you are not alone.

When your patience has been depleted.

When you’ve cried behind your sunglasses at a park as you watched your child’s differences come to light.

The loneliness you have felt from the long days spent with a child unable to read your emotions.

The difficult medical and educational decisions you struggle to make.

Know that there are so many of us with you.

We have felt the lows and celebrated the victories, too. We know the fear and the worry you wrestle with daily, and the immense pride you feel over the slightest progress.

I want you to find hope.

Today let’s bask in achievements and forget about regressions.

Even if only for one day.

Let your hope be stronger than your fears.  With so many unknowns in the future, know that it’s going to get better.

I know this because we will grow stronger.

We will continue to learn, to advocate, to protect and make certain our children know their worth and just how very much they are loved.

I am so thankful for this sisterhood of amazing mothers today and every day.

Have a very Happy Mother’s Day.

 

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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