Sometimes this little man is so intensely focused on an object or activity, the rest of the room, the rest of the world, falls deep into the background. He takes his time, studying pieces of this world sideways, upside down, and from every other possible angle.
For someone who “lacks appropriate eye contact” (so they say) when he does look at you, he REALLY looks at you. He examines every wrinkle and freckle, he touches, smells, and tastes.
He might not notice a person enter a room because he is intensely focused on a tiny bird, gently perched right outside the window. He doesn’t just see a bird. He sees feathers, shapes, unique movements, wings, eyes and so many colors.
Or he might be distracted by the steady, piercing sound exuding from the bothersome, bright overhead lighting.
So, when the COVID-19 pandemic and subsequent quarantine hit, 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.
The silver lining in this dark cloud of quarantine has been the chance to slow down. To be still and learn from this curious, brave, unique boy. Watching him radiate happiness from the simple things in life that most of us are moving too quickly to appreciate.
Like the way he savors every bite of summer watermelon and dances with his shadow when the sunshine brings it out to play with him, this little human is so complex yet celebrates such simple happiness every day.
For many of us parents of children with disabilities, the quarantine has changed everything, yet much remains the same. The isolating road we are on has narrowed with less in-person support and interaction, yet we continue to face the same kinds of difficult medical and educational decisions that we always have.
We continue to champion for our children to have the supports and services they need to thrive, while we consciously fight to keep our hope stronger than our fears.
With so many unknowns in the future, we must believe that it’s going to get better, and that 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. We will continue to be their voices until they have found their own.
This boy has said these words a lot lately. What this means to me, I must try and explain. There have been periods in his life where I never thought he would be able to say something like this. When you have a child with limited or delayed speech, you sometimes spend years coaxing out the (seemingly) simplest of words.
For me, the one that will always stand out as the longest wait was “Mom.” I will tell you that today, when he says, “Hi, Mommy!” it still sounds just as sweet as the first time I heard it. Even on those days where he says it twenty times in five minutes (repetition, repetition, repetition!)
There were also periods where I knew he didn’t feel happy. Really long, rough patches. We still have our hard moments, hard days, hard weeks. Truthfully, “hard” seems like such an inadequate description. The things we are dealing with are ones I never imagined facing as a parent, and I will never grow used to, either.
This boy endures a difficult reality every single day. The pain, confusion, and frustration he feels is immeasurable at times, especially because he cannot explain it to anyone. It breaks my heart how lonely that must feel.
But you know what he can do? He may have a rough day, but he’ll also find moments to just sit in gratitude and appreciate his life and unabashedly proclaim his happiness whenever he feels it. “I’m so happy!” he’ll shout, completely unprompted, when a familiar song comes on in the car, or he’s snuggled up in his favorite blanket, or when he is served a huge slice of watermelon.
This little seven-year-old practices gratitude for simple, happy moments. So why shouldn’t we?
I don’t let myself get lost in the hard days anymore. A tough morning does not define an entire day. Even in this dumpster fire of a year, there is still so much to be happy about. Don’t get so lost in the hard that you miss the simple, beautiful moments like this one.
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!