new adventures

New adventures tend to overwhelm Wilson. We went on a boat ride last night and he did great! We had held off for various reasons in the past, mostly concerning safety and how he would react to all the sensory stimulus involved.  These are the things that you and I don’t normally think about but are forefront in Wilson’s world in a very loud way. The bright sun in his eyes, the smell of nature mixed with exhaust, the wind in his face and subsequent noise in his ears, the heat beneath the snug and cumbersome life vest. He quietly took it all in. Exploring this new environment with his usual precise curiosity.

The biggest sensory obstacle was the abundance of wet items that, according to him, should not be wet. The soaking swimsuits and life vests dripping over the seats and carpet as people came in from the water. The splashing, the items that fell overboard… he went around with a towel drying things as best he could, including his hat that had fallen in the river.  But he remained calm about it all. It didn’t rock his world like it would have in years past.

He even made his way into the water and pure happiness ensued.

Eventually, all the newness, sensory input and excitment caught up with him and he was done. He laid himself under a towel for the remainder of the boat ride home.  He slept well until about 3:30am when he was up and ready to start his day, back in his outfit from the boat ride.  This used to happen after a day at the pool, and I swore it was the chlorine or something that he wasn’t processing well. That was a whole other rabbit hole of research and information. 

I think it’s just the usual roller coaster of exhaustion, excitement, and repeat.  It was so incredible to see that happy face and watch him process everything so calmly.  It’s these kinds of successful outings that give us the courage and confidence we need to continue to venture out and try new things. In the past, he just hasn’t had the coping and regulation tools that he does today. We didn’t either. We have all grown. He’s always impressing us, when we give him the chance. On to the next adventure!

(Once everyone recovers from the lack of sleep! Major props and extra coffee to David for starting his day at 3:30am with our little man.)

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.

Our Children Are Not Less Than

When it comes to disgusting comments and disgraceful humans, I try to avoid sharing the things that give them air, life, and room to breathe. The notoriety. The truly hurtful stories and events, I want to hide those from my fellow parents of children with disabilities because we do not need that in our life.

Sometimes though, I just cannot.  

Across the country there has been so much chatter about the re-opening of schools. As parents, we are all anxious, stressed, and concerned for our children.  This is no reason to start tearing one another down. To devalue any child or their education to make room for others. 

Now this, a MOTHER truly devaluing other children’s lives. Upset that the children in special education classes in her district are returning for five days a week vs. her child only returning for two days a week, she posts this on social media: “The kids that are going further in life aren’t the special ed kids sorry to say but it’s the truth. Also when I say special I mean head banging, screaming, throwing fits special! My child is going a lot further in life than those children and should be the one going five days a week not two. If you don’t like that truth I don’t know what to tell you!”

In another district, a KINDERGARTEN TEACHER posted on Facebook: “I’m so tired of hearing about special needs kids.  They’ll be fine. They were (SLUR) before COVID and they’ll still be (SLUR) after.” The rant and slurs continued. He, deservedly so, is facing dismissal. 

I am broken-hearted that there are these kinds of disgraceful humans out there. It is truly absurd. Raising and educating children at that.

Another mom of a child with autism suggested that these people could benefit from spending a day with our children, that maybe that experience would show them how and why this world is more beautiful with children like ours in it.

I say they don’t deserve to. I also know they couldn’t do it.

They couldn’t manage the screaming, the medications, the atypical communication, the anxiety, self- injury, and elopement.

No, they couldn’t do that. 

And certainly, they would miss all the wonder of seeing this world differently.  The pure and simple happiness found by dancing with your shadow or chasing butterflies.

They would not notice the grit, determination, and resilience a boy like mine brings to the table every single day to work through communication differences, sensory processing difficulties, and self-regulation obstacles.

Would they join him as he cautiously studies, touches, smells, and examines the world around him? Could they share in this six-year-old’s love of pirates, eggs, paper, and The Beatles?

Do you think they would get to feel that happiness found by joining his world just for a few rare moments? Like when he is busy scripting and reciting and realizes you have learned the script, too?  The way he looks at you, as if saying, “Welcome, it’s so fun here!”

No, I don’t think these people can hear the unsaid like that.

Something also tells me they cannot give more when there is nothing left. Conjure up patience when it has been depleted. No, that is something they would learn from a child like mine.

Oh, the places he will go. I am sorry they are missing that.

hope + progress

This is the boy that never allows his head to get wet.

When we force a hair wash, he used to scream throughout the entire process. This eventually morphed into him yelling for a towel as we quickly washed his hair. He would furiously dry his head and return to his bath toys.

If he gets splashed in the pool, he gets out to dry his head and neck and gets right back in. 

Swimming lessons, floating and water safety/survival have been rough, stemming back from the very beginning at a torturous mommy-and-me swim class (we eventually dropped out.) 

We’ve tried so many tactics, including his ABA interventionists joining us for weekly pool sessions using visual schedules. I didn’t care about the actual swimming part or even getting his face in the water. I just wanted him to be able to float, to be able to survive if he were to fall in without a life vest. He has always been so drawn to the water but has never understood its dangers.

In usual Wilson-fashion, he has come around in his own time. Here we are, six years later, and he has found his zen place, floating in the water. 

Every bath night, David and I look at each other with pure astonishment. Who is this kid?

Maneuvering through life with sensory sensitivities is difficult. The struggles Wilson experiences are often invisible to everyone but him. Certain sounds, textures, and sights literally cause him pain and distress.  This affects the foods he will eat, the clothes he will wear and the places he is able to go. 

Helping him grow and experience new things is a prolonged, relentless, and delicate dance.  I remember thinking he would never be fully potty-trained, tolerate a haircut (or a new outfit!), or learn to float. I know that sounds dramatic but when progress is tortoise-like or moving backwards, it’s easy to resort to that attitude. When you are in the proverbial thick of it.

I still don’t think he’ll expand his food tolerance but here we are, reminded that things can change. It’s funny how renewed hope sneaks up on you right when you need it.   

quarantine + autism

Wilson letters 2

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

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.

writing work 2

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.  

new haircut

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

advoate. JPEG

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!