What It Takes

I’ve been thinking a lot lately, about that question of: “What will it take?” 

What will it take for our boys to find success in the world over the next few years, throughout grade school and into high school, and then later in life as adults? 

It is a question that many parents to autism think about. 

You wonder if they’ll ever find independence, or if you will own the role of depended parent for the rest of your life? Not that anyone ever stops being a parent, but there are typical expectations that as a child grows up, your immediate responsibilities to your child lessen when they find independence and make their way in the world.

I find myself questioning this in the mornings, once all of my children are off to school, in that moment of breathing in recovery from what it took to get them on their journeys that day. 

Jack has been having a really hard time wanting to go to school, and where he is so privileged to still be in a classroom, it’s truly hard to reason with the five-year-old that he should be thrilled that he gets to go to school every day, as so many children are at home with remote learning. Try explaining to a five-year-old with severe anxiety, that what awaits him in the classroom is far better than what you could provide for a “home day”, as he so sweetly named them.

Just last week, he came off the bus crying multiple times, and when prompted to share why he was upset, he merely replied, “nobody likes me! I don’t have any friends!”

Granted, the poor kid asked his best friend to marry him, to which she turned him down (although her mom and I are still plotting the wedding should they ever grow up with such affection for one another) and that crushing blow to his bleeding heart was a tough one to shoulder on your average preschool Wednesday.

The next morning he claimed he did not want to go to school for the three hours he was up before needing to get on the bus and depart, and during one of my not so favorite pastimes, I worked as kindly as I could to force him onto the golden chariot, praying he would find courage in the 15 minute drive before he started his education that day.

After I got Alex to daycare, I cried in daycare’s parking lot, asking myself, “What will it take? What will it take to teach him enough self love to not need it from others?” Knowing the extreme to which he feels things, that particular feeling is a strategy we will need to help him master in the years ahead.

Unlike with Luca, where we are focused on sensory strategies to use his muscles, working out the furious energy that pulses through his body so fiercely that he cannot function without the OT work, our focus with Jack is on emotional intelligence and managing anxiety. Luca’s road map of what it will take him to find independence will involve strategies around appropriate social behaviors, understanding communication cues, and how to regulate what his body needs in terms of impulse control.

For Jack, his road map will be far more internal, understanding what he needs to battle the anxiety and self-inflicted assumptions that come with it; it will be learning how to control his emotions so they do not get the best of him, and figuring out how to recognize an internal battle before it begins.

When my wife and I think about what future maybe in store for our boys, we have determined to take it day by day, step-by-step, and never to think too far ahead. It just makes life easier to be present in the moment of what they need, as even that can change hourly. 

But I wouldn’t be human, if I didn’t confess that it still makes me wonder, “What will it take?” And “Do we have what it takes?”

Every morning at 1 AM, when Jack wakes with a night terror, I ask myself, “what will it take to help him grow out of it, and sleep through the night?”

Every time Luca attacks Jack, wrapping his fingers around his hair to pull him painfully across the room; or worst, goes after a peer at school because they offended Jack somehow, I wonder “what will it take to help him work through his aggressive behaviors?”

As I lack intuitive clarity, and cannot speculate of that I do not know... I can tell you what I have learned so far on our journey, should it be helpful to anyone else steps behind us... particularly with Jack, as I don’t feel like those on the spectrum fighting the internal battle are as often discussed...

It takes the note from his favorite teacher at lunch to tell him that he is brave, reminding him every time he looks at it until he comes home to proudly show it to me that he has someone who believes in him when we are not with him.

It takes a bus driver who says “Good morning, Jack”, pretending like nothing is wrong every time I have to force him onto the bus as he is kicking, crying and screaming with anxiety about what awaits him outside the comfort of his home... and it takes the bus monitor, who with such grace and kindness when she puts on her most excited voice, taking him from my arms, says “Jack, what book are we going to read today?” working her magic to distract him from his distress as she buckles him into a seat.

But most of all, it takes a diagnosis that gives all of his big feelings a title, and chapters upon chapters, minutes upon minutes, hours upon hours of research into this very unique spectrum of a disorder, providing validity to those big feelings; a team who will take the feelings seriously; information to his parents who can help give him the tools and strategies he needs to compete in what can be a cruel world of ignorance.

Without that title, our boy would be looked at as someone who is disobedient, who throws unruly tantrums, and who needs to be disciplined into listening. Our boy would be looked at as weak, immature, and made fun of for not being able to toughen up, suck it up, or worst- someone may try to teach him how to “toughen up”. 

Jack does not have vocal outbursts the way that Luca does, or flap his hands when he’s excited running in circles, or line up his toys as the world deems someone with autism would. But Jack, our brilliant, sweet, kind, feeling boy, needs the same team of experts that Luca does. He needs the same support from parents for the parts of his five-year-old world he finds overwhelming and challenging.

I guess what I have learned is, all a child needs, is someone to believe in them. Over and over again, every day, reminding them what they’re capable of in the moment they forget themselves.

So, what does it take?

The ability to believe... the willingness to share that belief... and that courage to do so proudly and loudly, even when others do not agree. That, my tribe, is the magic of parenting autism. Xo

Lost

I was afraid he lost it.

And only recently, did I admit I thought it was my fault.

When COVID first hit, we faced some of the hardest days with autism. Mainly, I’ve determined, due to the lack of sleep, and the heightened state of anxiety we all faced.

In the worst run of it- out of 33 days, 29 of them I spent up for hours during the middle of the night with Luca. 

#Sleeplessnightswithautism, I deemed them… documenting them on my social media feeds, trying to explain what they looked like, and although the kind suggestions of “just let him work it out”, or “leave him in bed, he’ll be fine” and “don’t let him have his iPad” continued to come our way, I needed people to understand what our sweet boy was going through.

Seeing is believing, and they needed to see a STIMM in action… the way his small swift feet paced without hesitation around our darkened living room… his tiny fingers working through the buckets of small animal figurines, squinting his eyes to the light only provided by the Disneynature movie playing in the background…

I needed to show the way he simply could not settle… not due to a screen of an iPad, but due to the internal reel that raced through his mind, matching the drum to his rapid heart beat…

I needed to show his love of the lines and the attention to detail that when his mind was working in such magical ways where he would create these beautiful landscapes playing out in front of us. 

I was afraid, for a minute, when his lines stopped… that it was my fault.

Because when I couldn’t take the lack of sleep any longer, I worked with his doctor to put him on a medicine that would help him slow that reel at night… calm his heart beat… a medicine that I was afraid may have stopped his love of the lines completely... as he stopped lining up his figurines, and he stopped creating those landscapes of magic and wonder, once the medicine regulated his days.

My goal with the medication had never been to stop his stimming. I need to make that clear. There are mixed views on if you should allow stimming, and despite any controversy this may imply… Luca’s stimms of needing to create in that world were what I considered to be his magic - one that I felt privileged to bear witness of. 

I adored that he had this creativity stirring inside him that simply had to be shared with the world. 

I admired when he could show with such conviction that his artistry demanded the space and ability to be created… 

Like a painter who spends hours on a tortuous one nighter in a dark studio in front of a blank canvas… 

Or a songwriter who carries a small notebook, constantly humming and drumming a beat, allowing the words to swirl in their heads until they make it onto the page… 

The way a composer can get lost behind the keys of a baby grand, allowing every feeling to escape through their fingers as they move along the keys…  

It was magical… and by no means something I had hoped would end.

As I was making our holiday video though, Luca sat on my lap at its’ completion so I could show him the finished product. (If you haven’t seen it, selfish plug- give it a watch! I was really proud of how it came out.)

The moment that we got to his section, his eyes lit up. He watched as he made the lines on the screen, and screamed “Penguins!” when we reached the image of he and his friends at the aquarium. It was almost as if he had forgotten what it felt to be inspired.

He lept from my lap, worked his way to his playroom, and the magic began. 

The lines returned.

My heart ached as I realized how much I had missed it. Watching him in his happy place, creating without boundary, alive in this other world. 

I savored it. Unsure if this was merely a moment of inspiration that may not continue.

As the days went on, it was like his lines had never left.

Tonight, when I suggested The Lion King as he requested to watch a movie before bedtime, he paused to consider it. 

After a moment, he agreed, and then searched the playroom to grab his many buckets of figurines.

Those powerful tones of the opening scene played through the speakers, and I watched him take the small antelopes out, and start to line them up, while humming with the music. 

After the antelopes, he reached for the elephants, as the screen displayed the scene where all the animals make their way to meet the new baby prince, Simba. 

He lined up his butterflies, and his cheetahs… his buffalos, and his hyenas (or what he’s deemed to be hyenas, because frankly- they don’t make hyena figurines), all in front of the shelf on which he placed his monkey and his lion.

He continued to create for an hour into the film. 

It was beautiful.

Our boy had not lost his magic. 

Our boys’ magic still had a place to be fostered and celebrated... 

We just needed to wait patiently and remind him how special we thought it was. 

To those parenting, autism or not, remember that each child is magical. Take the time to witness it, celebrate it, and let them know how important you think it is… as it is uniquely theirs. And you never know when they may grow out of wanting to be part of that magic. 

To anyone who feels like they too may have lost part of their identity lately… maybe Luca’s lines can remind you how important it can be to always remember who you were, in order to discover who you can still become.

XO