I have asked myself this question so many times in what felt like weak moments.
There are parts of this autism motherhood road I have accepted will not get any easier. There is no way to dull the pain you feel while watching your child battle big things, things no child should have to face. The anxiety, rigidity, and emotions they cannot make sense of or verbalize. Their frustration channeled into self-injurious behaviors.
When your child hurts, you hurt. Try as I may, I cannot come up with the words to describe the feeling of seeing my son hurt himself out of frustration. When there is nothing left for him to do except scream at the top of his little lungs, the words he needs consistently trapped deep inside of him. I picture our developed brains something like a smoothly running interstate, while my son’s is an entanglement of traffic jams, dead ends, and one-way streets. A never-ending, exhausting road.
Admitting the difficult, to yourself or others, is not weak.
That is where you learn to grow, adapt, and summon up your strength and resilience.
Whatever your struggle is right now, keep at it. Lean on others, talk about it.
On a recent trip, we asked him every day, several times, if he wanted to go swimming. He firmly, directly, and absolutely said, “No.”
So, someone would stay home with him while the others headed for the pool. I chalked it up to mood, sometimes you just don’t know with him. He can be over a favorite toy or hobby in the blink of an eye. I do not get nor expect an explanation.
After three days of this, we decided to take a picture of the pool. This was the same pool he had been to so many times before, so we figured this was worth a try. I had a feeling something was lost in our communication.
The next day, we showed him the photo and asked if he wanted to go swimming. He excitedly responded with “Yes!”
Back to the beginning, the first specialists we saw when Wilson’s speech development was delayed continually insisted that he needed more visuals in his life. All day long, he should have images to remind him things like how to wash his hands or use the bathroom, visual schedules to transition from one activity to another, food visuals, stop/go images for safety, etc.
This was hard to wrap my head around. He knew how to do all these things, and I knew he understood so many words even though he couldn’t say many. I thought they were just trying to put him in the “autism box” – assuming he needed these seemingly excessive visuals like many other children with autism. I stubbornly wanted him to understand me, my way. I so badly wanted the words coaxed out of him.
But they were right. Eventually our walls were covered with these images he quite simply needed for regulation. Stories on self-care, self-calming techniques, stop signs, daily routines, and schedules. We kept images in the diaper bag, on our keychains and cell phones. We’d scribble plans out on whiteboards and leave instructions with caregivers to do the same.
It didn’t matter if you were the World’s Most Terrible Artist, he listened to these images. He understood them. Especially when his anxiety was heightened and regulation down, this was the way we could earn his attention.
Fast forward, and today this sweet boy knows hundreds of new words and concepts. He continues to understand so much more than he can say. Words have a way of escaping him. He learns them, he knows them, and then he often cannot access them. This frustrates the hell right out of him. This is the downright unfair, heartbreaking part of his brain working in this way it has been designed.
We can tell him the plan 1,000 times. He’ll anxiously repeat it back to us, over an over, waiting for confirmation that he has it down correctly. If we SHOW him, he calms, accepts, and moves on. He might come back and quietly check the image or schedule again and then continues with what he was doing.
Now he is the one adorning our walls with visuals. He draws, cuts and glues paper, and carefully hangs his creations with blue tape. I think he knows he can say so much more this way, and we are listening.
Communication looks different for everyone, and it’s constantly evolving. Keep trying new approaches and circling back to old tactics, even the ones that didn’t work the first go-around. It is always worth a try.
“Because he was made that way. Just like you were made to be just the way you are.”
Oh, how I have dreaded this moment in the past. I have asked myself that very question a million times, only to come up with as many different answers. Like many things in our autism world, there is not one straight answer, leaving you with the same frustration and confusion you started with, and more questions.
What did I do wrong?
Did I take enough of those prenatal vitamins?
Maintain the right diet during pregnancy?
Was it his vaccination schedule?
What on earth is a refrigerator mother?
Or maybe this path was meant to be his long before he arrived here on this earth.
People will tell you that everything happens for a reason. I don’t know if autism was meant to be or not but the one thing I do know, is that these two were meant for one another.
She has messed with this regimented little boy in the best possible way since she arrived. And he has been fascinated since he laid eyes on her.
As they get older, their differences have become more apparent but so is how much they are learning from each other.
She is so proud of him for every new accomplishment, while also slowly registering that life really isn’t always fair. She knows which buttons to push to set him off, but will also be the first one to rush to sing to him when he needs comfort.
“Give a squeeze,
Nice and slow,
Take a deep breath…
…And let it go.”
When the fog of frustration clears, I see beautiful “reasons” all around. Wilson is a constant reminder to slow down and appreciate the simplest of things. He could study leaves for hours and lays down to examine ants slowly making their way across the driveway. He studies his reflection with such curiosity and wonderment, and he will study you the same if you let him in.
And is there a better sound than children laughing? Turns out, you do not need words for that.
I have stopped constantly wrestling with the paradox that is this world of autism, insisting it had to be one way or another. Difficult or easy, high or low, complicated or pure and simple. Perhaps it will be, and always has been, both.
Life can be everything. Together, these two are everything.
**Click on image below for a sweet video. That Dumbo was Wilson’s favorite thing in life for his first four years. He brought it everywhere. He loved to rub it’s nose on his forehead when he was tired or needed calming. He shared that feeling with his new sister and it was such a tender moment.
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.)
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!
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.
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.
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!”
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.
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.
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.
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.
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
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?
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.
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.
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.