Fight or Flight

I can’t say that I truly understood the concept of fight or flight, until we met Autism through Luca’s eyes.

However simply explained, the weight and severity of it cannot be captured in words except when experienced first hand.

For many on the spectrum, they experience “fight or flight” as their immediate reaction to anything overwhelming. Whether it be anxiety driven, unexpectedly scared, or passionately emotive (mad, sad, happy, doesn’t matter), similarly to when a switch board blows a fuse, their neuro-wiring lets them know they anticipate they are in danger, and they either turn to fight or flight mode.

For Luca, we’ve learned that when he’s feeling any emotion intensely that’s driven by feeling dishonored, dismissed, or worst, negatively to someone he cares about, he enters fight mode. Our peanut of a six year old, can tackle, tame, or target anyone who he believes to be the cause of this emotive sensory overload. We’ve learned to trim his nails at least once a week, to avoid life long scars, and watch how he intently watches someone with purpose, in the hopes to anticipate anything he may be feeling without the words to express it.

During the last year, we’ve worked closely with his teachers to help him name his feelings, in the hope the words will continue to gain momentum and power so he communicate verbally, instead of physically about how he is feeling. This takes patience and diligence that can feel exhausting, both for those working with him, but particularly for Luca.

We’ve battled his fight mode for nearly 3+ years, and there are days where we can’t imagine what our neighbors must be thinking from the shrieks and cries of whoever he’s come across, because the audio of it must sound awful.

Our poor Luca, afterwards, always feels remorse, confusion, and regret. He is the sweetest boy you could ever meet, and loves so fiercely that you know his wish is not to hurt anyone. It’s simply in the way he is wired, and how he processes his feelings.

As hard as I’m sure that sounds, I can deal with fight mode all day compared to flight mode. I can take the scars and the bruises it takes to keep him safe, and believe working with him continually in the ways that our village is doing so, will give him the muscle memory to change how he processes those feelings before he is old/strong/big enough to cause real harm.

It’s when he is anxious, nervous, or scared, and his default is to hit flight mode, that I’m at a loss.

We are fortunate to live at the end of a very long driveway, one which I’ve had to sprint down too many times to keep him from running into the main road. Although I’ve been a runner for years, there have more times than I like to admit that I worried I wouldn’t catch him, and even though his speed will serve him athletically in whatever sports he finds solace in as he gets older, it can send my anxiety to a place that only a parent’s desperation to be able to protect her children could understand.

There’s something that’s causing him extreme anxiety lately, and on Friday, it took a turn for the worst. It could be that solar eclipse that happened last week, or that yet another mercury retrograde has all of us out of wack until next week. It could be that he’s growing, and feeling everything intensely, or the heat wave last week has him out of sorts. But where he cannot tell us, we’re left observing, trying to narrow down the possibilities, and keep him safe however we can.

Unfortunately, our really loving and well behaved new puppy is teething, and on Thursday had been playing with Luca, but she took it too far, and nipped and scratched at him unexpectedly. He couldn’t anticipate it, which meant he couldn’t prepare for it. He also couldn’t understand that she was playing, and not trying to cause hurt, as all he felt was the actual pain from it.

When the bus doors opened on Friday afternoon, and Jack got off the bus, Luca’s eyes fixated on our puppy who I had brought down the end of the driveway to greet them, and he froze - refusing to exit.

I watched as the cars began to pile up in line, waiting for the bus to remove their stop signs. Strangers who have often honked horns, and vocally expressed their impatient before, continued to join the elongated traffic line.

My anxiety was rising, realizing Luca was not going to get off with out help, so I swept our puppy up in my right arm, and used my left hand to reach into the bus to guide him off.

Once I got him off the bus, I turned to the right to put the puppy down, and I felt Luca’s fingers escape from my grasp. In under 3 seconds, my boy let go of my hand, and jetted into the main road.

Our bus driver, both in the afternoon and the morning, is educated, attuned, and always watching. She hadn’t taken the stop signs down, as she always waits until we are safely a few feet down our driveway and headed in the opposite direction of the traffic.

As Luca’s name escaped my lips in the most desperate of screams, his feet did not stop, so I willed my own to find his pace and stop him.

Tears rolling down my cheeks, I picked up his wriggling and escaping body, and tucked him like a football underneath my arm, my right hand still firmly holding the puppy’s leash, and I dragged them both safely another twenty feet down our driveway.

Once far enough away from the now moving traffic, I let Luca back to his feet, which fiercely moved as soon as they found the ground, towards the direction of our home.

That afternoon, once the boys, I, and both our dogs were settled back safely in the house, I received a call from our amazing bus driver, letting me know she’d plan on coming by the house shortly, to take photos and video of our driveway to use to convince her boss that we could accommodate the small bus’s ability to turn around at the end of, which would allow our boys to be picked up right at our door step.

She did, in fact, come by an hour or so later. She took the photos and the videos, and sent them to her boss. She advocated for our children over the phone with him, refusing to take no for an answer.

This morning, their yellow chariot found its way down our driveway, and my wife and I waited with the twins safely tucked back near our garage doors.

This morning, when our tired Luca (who hasn’t slept well all weekend, still completely anxiety ridden) got on the bus, we could take a few extra minutes to reassure him he was safe and ok while he was strapped in.

This morning, when we waved goodbye as they drove safely down our long driveway toward the street, the tears flowed as quickly as they had on Friday afternoon, but this time in relief, and gratitude.

This morning, we are extra grateful for the incredible humans who play such an important role in our children’s academic success, but often go without acknowledgement or attribution.

Should you ever experience a child on the spectrum in fight or flight mode, I beg you to believe whatever their behavior shows you. If you see them dart toward danger, ignore the instinct that you think yelling their name, or stop/freeze etc, will be enough to stop them. If they move, you move, period. It’s a simple and unbelievable as that.

I cannot imagine what could have happened on Friday afternoon if someone other than a human like Ms. N. had been driving, who didn’t know the severity of Luca’s fear, and believed the danger to be real until safely down our driveway.

Ms. N, Ms. K, and Ms. D. - you are our heroes. We are truly indebted. Thank you.

To all the incredible humans who go above and beyond to love children who cross their paths for whatever reason, as if they were their own, you deserve every acknowledgement out there.

To all the parents raising littles that experience fight or flight like we are, I pray your feet are swift, and safety is in your favor, like it has been for ours. We see you. You are not alone. Xo

10 Things We Wish You Knew When We Tell You Our Child Has Autism

There’s this look that people get when you tell them your child is on the spectrum.

This pity/sympathy look (depending on the authenticity of the heart of the human you are telling) that always shows up the second that label is attached to the ones you are responsible for.

In fairness… It's a look that my wife and I both felt when we were told our twins were on the spectrum.

It’s a look that I believe comes from a misunderstanding of what autism actually is, because despite the fact that it's held a significant definition in our world for the last four years, it’s not one that we had any experience with before we met it face-to-face, times two.

So in the hopes that the following may help you, dear reader, the next time you hear a certain label of diagnosis, here are the 10 things we wish you knew when we tell you that our child has autism…

1. Autism is not the worst thing in the world. Autism does not mean our child is dying. Please save the gravity of that look for those who are bearing tragic diagnosis’ and dealing with children who are facing far more severe labels like cancer, and leukemia. 

2. Autism is not just one thing… Autism is a spectrum - an incredibly large and unique and diverse spectrum that can mean a million different things for each and every child. No two children on the spectrum are exactly alike, just like no two humans out there are, so please avoid assumptions and classifications that you’ve typically jumped to beforehand.

3. Autism is not an epidemic. It did not just show up over the last two decades. Yes, maybe the research and resources made available because of that research have been more prominent over the last two decades, but it did not just show up. It’s been studied for more than 80 years, and the results of that research are merely starting to make a notable difference for those with the diagnosis. 

4. Autism is not because of how I, or my wife, have parented our children. In the 1950’s, when society got many things wrong, might I add, they had the audacity to propose the “refrigerator mother hypothesis” suggesting that autism is caused by mothers who weren't “emotionally warm.”  I promise you that our children have been loved, with the most “emotionally warm” hearts, not by just one - but TWO mothers, since before they were even conceived. 

5. Autism does not mean our children are not engaging, loving, or able to connect with others. Yes, autism has been defined as a group of developmental disabilities that can cause significant social, communication and behavioral challenges - but it does not mean that it always does, has, or will for every child on the spectrum. Many children on the spectrum are the sweetest, most loving, and engaging with those who they trust, feel safe with, and let into their world. While we are so often working with those on the spectrum on how to form relationships with those outside the spectrum, we should be spending equal amounts of time encouraging those not on the spectrum to work on forming relationships with children like ours. 

6. Autism does not mean a lack of or inability to have empathy. In fact, those on the spectrum experience extreme empathy. Our son can often feel crippled with empathy when he bears witness to someone he cares about being harmed in anyway, even if only emotionally. 

7. Autism does not mean that someone is incapable, has a low IQ and/or significant learning delays. Although for some there are learning delays, and lower IQs, many on the spectrum are actually brilliant. But on the flip side, Autism does not mean that someone has a special gift either. Yes, many on the spectrum, because they are differently wired, have a special skill or ability that makes them a savant in a certain area of interest, but this is not necessarily true for all on the spectrum.

8. Autism does not always appear in physical stims, or heightened aggression. Yes, although some children on the spectrum do indeed physically stim and display heightened aggression, where others can go through what we’ve discovered is more of an internal stimming where their emotions are what run rampant versus their physicalities, and then some don’t experience it at all. 

9. Autism can not be outgrown. Autism is not something that a child is diagnosed with as a child, that the outgrow like an allergy or a bad habit. As children are worked with at a young age, because of the incredible resources out there for those with the diagnosis, they develop the strategies to adapt as expected in social and educational settings. They are taught about their place on the spectrum, and worked closely with to help them build their awareness around where their strengths are they can rely on, and the areas in which they will need to apply extra energy throughout life so that those delays/deficits do not keep them from finding success.

10. Autism is rarely found in girls. Statistically, 1 in 68 school children are on the spectrum, but 4 out of every 5 of those are boys. It’s not that autism is rarely found in girls, it’s rarely diagnosed because it often goes undetected. For girls on the spectrum, it’s found to be an internal battle, versus the external one for the male counterparts. We are taught from a young age about the importance of “being a good girl” and “acting like a lady” along with so many other scripts that are fed to females in ways that males are not. If the awareness and education of what autism can look like internally, throughout the spectrum, was taught, but also supported and understood, perhaps girls would feel comfortable sharing how they were actually feeling, thinking, and coping from a young age, where their voice would be allowed and heard. If this social shift were to occur, I feel in heart that those numbers of 1 in 68 would not only shift, but the 4 out of 5 would as well.

I find it fascinating that we create our first impressions about someone within the first ten seconds of meeting them, but it can take weeks, months and even years of time to reshape how that initial feeling created so quickly. 

It is my hope that for those who don’t have experience with autism, sharing our story helps to shift the standard information opinions are fed with, versus some of the incorrect stereotypes that can provide such negative connotations. 

Because the thing is… we don’t know what we don’t know. None of us do.

I know we didn’t the first time around, and it took months with it staring us in the face day in and day out to see what we were missing. I’d give anything to get that time back.

So maybe, just maybe, this can help you feel more informed the next time you hear about someone with the diagnosis of autism. 

Because there is a lot of amazingness that can be missed if you’re stuck in an uninformed decision you made in 10 seconds, during the year it could take you to learn otherwise.

XO

It Will Be Ok.

I’ve had a hard time finding the voice to share lately. 

The story I feel it’s imperative to share, is a hard one to put out there.

You see… now that the paperwork’s been submitted… soon, we’ll find ourselves in that small white room again… that sterile environment with intentionally placed toys… and a team of humans in white coats with clipboards….

When I think back to the first two times... 

How unprepared we were… 

How truly naive we were… 

How scared we were…

I keep trying to think of what I wish someone had told us about autism… 

What I wish those white coats had said to prepare us for the last three years… instead of asking us how strong our marriage was, what child care we had lined up since we both believed we should still be able to work for a living, what expectations we had for our children, and what our support system of friends and family looked like…

I remember looking at them blankly as I squeezed my wife’s hand, thinking, “Is this really what you want to talk about?” Furiously feeling unprepared for whatever we were about to face… 

And now, as we prepare for the third time around, I realize all I wish they had told us was…

It will be ok.

That “there will be days when you’ll worry he’ll never speak…. And that when he cries in frustration it will break your heart in ways you never knew it could be broken…”

That “there will be days you’ll wonder if you’ll continue to spend what feels like half a mortgage payment on diapers for the rest of your life, and as he starts to out grow the only sizes left, you’ll start to research prescriptions for the larger sizes…”

That, “when they ask you how strong your marriage is, it’s because there may be days that feel so long and so impossible, that you and your spouse start to turn on each other because how could you get mad at an innocent child…” 

That “there will be days that you will not be able to show up for the friendships you had, and you may miss out on important occasions, like standing beside them as they marry their true love, because you can’t leave your children alone for a few hours, let alone a few days for wedding festivities out of state.” 

That “there will be days when you hit rock bottom, and while you’re at the doctor’s office for your annual physical, you will cry if they ask if you feel safe at home, not because of an unruly marriage, but because as your child gets older and more aggressive, you actually fear how long you’ll be able to keep both him, and yourself, safe.”

“There will be days when you are simply lost at who to name as a caretaker to your children in your will, because the reality of the situation may simply be unfair to leave behind, and you will decide you simply cannot die.”

I wish they said some of the hard scenarios we would inevitably face with not just one, but two sons on the spectrum. 

I wish they had given us the perspective of, “buckle up folks, this isn’t the parenting road trip you thought was in your windshield ahead”. 

Because had they said that, I feel like they would have finished with “BUT, it WILL be ok.”

I know they’d emphasise the WILL when they’d say...

“There will be a time when your child finds his voice, and teaches you the definition of what it means to sing as if no one is listening, bringing you to tears of pride and joy.”

“There will be a day when you don’t think you can try any harder, and it suddenly clicks for him. It won’t take him weeks to potty train, but hours, and that surplus of diapers you have stashed in the basement will no longer be needed.” 

“There will be days that have what may seem like such small victories to others, but to you both feel like both heaven and earth have been moved for your child, that only your partner in this race of life is who you would ever want to share it with, bringing you closer than you could ever have been without the struggles.”

“There will be a time when you show up for a friend in a way that only you can... like when another mom hits their rock bottom, but you are there to pick up when she calls, and show up in the most authentic way so she knows that not only is she not alone, but that for her family, too, it will be ok.”

“There will be a healthy way to teach your child emotional intelligence, and the importance of using the words once he’s found them, instead of the physical aggression to work through how he’s feeling, teaching him at such an integral age that allows him to show up for society as a better human being decades later.”

“There will be days when you count down the minutes until you can tell his therapist/teacher/para about the small victories you and your spouse basked in earlier that week, and you will cry tears of joy together, because that administrator knows just how amazing each small victory is.”

“And that there will be someone in your life who knows your children and will love them enough to show up in every which way they need. You will know who they are because they will be actively present in your life, and when you ask your child who they want to be their valentine, he will name her before he ever thinks to name you, because she has shown him her love every day since the moment he was born. And if someone, heaven forbid, had to fill your shoes when you were gone, he’d trust her to do it.” 

It will be ok because parenting autism, or even having autism, is not the be all end all of what it means to be ok. 

It is challenging, but it is beautiful. 

It is lonely, but it presents the most authentic relationships of your life. 

It is sacrifice after sacrifice, but it is also reward after reward, in every sense of the phrase.

It is something that not everyone will understand because not everyone was built to understand something of such magnitude. 

But you, my friend, were built for this. 

And it will be ok.

I found the voice to share this because… whether or not our third child receives a diagnosis when we leave that white sterile room this third time around simply does not matter.

What matters is, that IT WILL BE OK.

If you have someone who needs to read this, please tell them, IT WILL BE OK.

If you, yourself, need to read this, IT WILL BE OK.

Every day, for the next chapter of days to follow, IT WILL BE OK.

We see you. You are not alone. And it will be ok.

XO

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

Happy Holidays!

Holiday Greetings, to you and yours!

2020.

It’s been a powerful year for so many.

For our family, it was one where we learned so much.

About each other…

About what really matters…

About who we are and who we could be…

And so this year, although we hope you hang our holiday postcard among many hosting dozens of smiling faces who miss you as well, we thought we’d send something a little different… 

Something that fills you in on what our year looked like…

In a way that we couldn’t in person… 

Something to introduce you to who we each became this year, through the months of adversity, change, and magic that only the turning of a century could do...

There once was a time, in the not so distant past, that our boys were men of few words. 

You see, 2020 introduced us to our storyteller… our actor… our little performer… not quite sure where he gets it from, but our Jack is happiest when making others happy.

This little boy, who is less than little as each day goes by, is our constant voice of reason… our voice of clarity… our literal reminder of things we’ve said and shouldn’t say… of the stories that fill his heart and head so strongly he simply cannot forget…

His sweet voice has air to fill through his missing front teeth, and he takes every opportunity to use the words he’s found, ask questions, and hold you accountable. 

His heart is bigger than most, and although he can feel the weight of all feelings… he can tell you he loves you with an ease and sincerity that makes that burden seem bearable. 

As for our little Luca, our light… our Casanova… his words are still coming, but as they come, they enter with the sweetest tone and levity… songs move his soul in a way that brings serenity and joy.

Luca is strong, built for endurance and with a fierceness that is frightfully compelling. This summer, he learned that he was in charge of his own destiny. As he fell in love with watching movies about the ocean, he determined he too could swim under water. Within an hour of trying, and figuring out just how to hold his breath, he spent the rest of the summer exploring the freedom beneath the surface. 

2020 brought Luca the magic of Disney+, and Disneynature, introducing him to the entire animal kingdom. His love of the lines… whether they be of penguins, or elephants… lions and bears… or gently flying birds around… his eyes lit in excitement imagining the feeling of the wind in your wings… was simply magical.

Our boys continue to teach our family about autism… about it’s uniqueness and improv… it’s 

Struggles and lessons… it’s light and magic… a pandemic that takes your routine and throws it out the window can surely teach you how much you can handle… 

As for our rainbow baby, Alex turned two this June. You couldn’t tell, as her stature is similar to her brothers, which we joke gives her the status of a triplet, not a younger sister.

This kid… oh how she makes our hearts smile. She is as sweet as she is sassy. She is as kind as she is strong. She is the definition of what it means to be raised by two strong women, and protected by twin older brothers.

Her words are arriving slowly, but surely, however when she can choose how to express herself, she reaches for the pens, markers, crayons, and paper. She simply cannot get enough. 

She can hold her own, though.

As for Steph, 2020 and COVID did not slow down Pro Image Painting, LLC. Not a stranger to diversity, Steph worked diligently to ensure everything she’s built stood tall, always taking care of her team, and pivoting when needed. 

She took on a 4000 square foot unit, additional vehicles, and everything it takes to build and support more crews.

She became the only certified painter in New Hampshire to work with Fine Paints of Europe, and elevated her business to a level where its reputation speaks for itself.

And, while hustling like no other, managed to get her invention launched, picked up by The Grommet out of Sommerville, MA, and now onto Lowes.com.

As for me… if you’ve kept up with the blog at all, you know I’m an open book. 

2020 didn’t look quite like I thought it would.

However, a pandemic, and three young children under the age of 5, two of which on the spectrum, I’ve found my days to be filled with supporting their schedules, and Pro Image when I can… building a home and a life we can be proud of.

You see, if 2020 has taught us anything… it was that we were stronger than we thought, but have many miles yet to run in this race.

We learned how much we took for granted…

Like the gift of being able to say goodbye to someone you love, and be surrounded by those who understand the loss as greatly in the days that follow…

We learned the meaning of real friendship… like the kind you can’t live without…

We learned the power of magic, and those who believe in it… 

We learned the power of hard work and an unwillingness to give up…

And we learned that this too, is temporary. If this is merely a chapter to our story, there is so much left to be written… moments to be captured and frozen in time… and memories to be savored as they are created… 

We miss you all… more than we can say… but we hope you know that you are in our hearts this holiday season… and hope that peace and joy fill your homes where we cannot, as we all stay safely distanced, waiting for all of this craziness to be over. 

Peace out 2020. See ya’ll in 2021. Happy Holidays. From Our Family, to Yours. Xo

Improv of Autism

Improv: of, relating to, or being improvisation or improvising : to make, invent, or arrange offhand.

I can remember Freshman year in college, standing in the Black Box theatre, as the exercise of “Improv” was explained.

There are no rules, our professor said, except to accept what you are given and not say “no”. If you were to say “no”, the exercise simply would not work, and what could be a beautiful practice in experimenting, learning, and believing would be over.

We were unleashed on the stage, at the whim of our fellow participants, encouraged to let loose, let go of any caged restrictions of being polite or proper we brought with us when we entered, and told to trust the players, giving them our everything while in the arena.

Lately… I feel like this is simply the only way to explain what “Parenting Autism” Is.

(C)Becky Abrams Photography 2020

Parenting Autism is buying screen protectors for televisions, knowing that at any given moment, something could be projected at your tv, and saying “No, we don’t throw things at the TV” means game over, with shattered cracks and black fuzzy projection is in your future.

Parenting Autism is the inability to relax at a birthday party or group gathering, because any simple thing could set your child off, and in the split second moment of fight of flight response, you have to be able to deflect both or either.

Parenting Autism is accepting that if you are in a gathering of any kind, where your child tells you it’s time to go, you pack up your troops and belongings and hit the road, despite if the journey there took longer than the time you spent in that place.

Parenting Autism is understanding that if your son sprints down your long driveway like an African cheetah who hasn’t eaten in a week but sees a deer at the end where the cars are rushing by, you can not expect him to listen to “freeze”, “stop” or even “come back please”, and you have to accept that he is going to run to the end of the driveway unless you prevent him from doing so.

Parenting Autism is watching “boys be boys” turn into life long scars when typical wrestling provides permanent damage and the folks in the ER know you by your first name, because “we don’t hurt/kick/punch/pull hair/etc.” simply does not register amongst the focused rage of revenge.

Parenting Autism is a melting heart when those same boys look to each other in moments of tenderness, and despite that social interaction, physical touch, and eye contact can be atypical, practice all three, followed by the words of “I love you” before an unexpected embrace.

Parenting Autism is understanding cant’ vs won’t, and not holding it against them, or yourself.

Parenting Autism is tears… lots of tears, but both those of sadness and equally as many of joy when you let them fall.

Parenting Autism is strain on a marriage, the kind that can either break or make you, depending on if it tears you apart or brings you together, and the kind that can make you believe in the power of parentship: the strength of a team.

Parenting Autism is sleepless nights… where the brain of your child cannot stop, and the imagination is wild as the rest of the world is at peace.

Parenting Autism is in the love of the lines, remembering to believe in the smallest of details and differences that makes each piece of line an important factor in the greater picture.

(C) Becky Abrams Photography 2020

Parenting Autism is accepting that your child plans to eat the same meal every day, no matter how strange or lacking in vegetables it may be, because at least it means their belly is full.

Parenting Autism is high-fives in the kitchen with cheers when your child eats a new food, and with a fork instead of his fingers no less.

Parenting Autism seeing the importance of a specific print on a specific T-shirt as the difference between a good day and a bad day at school, because the love of the character in that print can make your boy brave in the moments when the anxiety can feel paralyzing.

Parenting Autism is celebrating when your child gets notes sent home from school, that they had a “great” day, were present, worked hard, and served as the classes’ special helper.

Parenting Autism is teaching your child that all feelings are important, and meant to be felt - accepting and acknowledging any and all of those feelings when they surface unexpectedly.

Parenting Autism is sacrifice for all members of the family, but the greatest gift of learning what hard work and commitment to each other can truly mean.

Parenting Autism is witnessing magic in the every day moments, the kind that creates beauty that cannot be imagined or believed if not experienced first hand.

Parenting Autism is blind faith in that every moment of your life before the one you are in has prepared you trust your instincts and move blindly forward without expectation or opposition.

Parenting Autism is getting on board to not saying “no”, but to being present with your child for all of it: the hard moments, and the magical, twenty-four hours a day, five hundred and thirty six days a year.

(c) Becky Abrams Photography 2020

When we started to follow the rules of improv, in terms of how we parent autism, we found more joy, more excitement, and more freedom.

We let go of the society presented rules on how to parent, and began to listen to what our children needed from us, accepting that all players on the stage had equal opportunity to dictate where the scene could lead.

We stopped taking it out on each other, like some how parenting autism was anyone’s fault, vs. just the magical arena we walked into, choosing to partner, hand-in-hand, as a unit in the skit, vs. individuals thrown in separately.

We began to focus on the wonder, and the reward in all of the work, appreciating the unknown twists and turns of our story.

We participated in the art of it, and watched in awe on how our faith, attention, trust, and acknowledgement gave our children the courage and confidence to be who they were made to be, each taking opportunities to shape our narrative.

We are only a few years into this improv journey with autism, and fewer as the present improv troupe we were made to be, but we look forward to the journey ahead as a team.

Yes, “Parenting Autism” has narrowed our audience, as our performance is not one everyone buys a ticket to, but those in the stands cheer louder than a room full of those who were barely watching to begin with.

And yes, “Parenting Autism” is a marathon, not a one-night performance… but it’s fresh, exciting, and still yet to be decided, promising cliff hangers at every turn.

So, if you’re in the arena with us, send us a wave, a wink, a hello… or even an introduction to whatever scene you want us to be a part of. We’ve learned the rush and thrill of the trust fall, and once you’ve experienced the pure organic magic that comes from the unknown, it’s truly hard to ever say “no” again. XO

Hustle BUS-tle

This morning, was like every morning since just over a week ago, when the Bus Driver let us know she’d be picking our twins up early, because more children had opted in to take the bus, and instead of being the last on the route, we would now be the first. However happy to accommodate, it has made our need to be at the end of our driveway happen thirty minutes earlier each day.

The morning hustle that was relaxed at the start of school, offering more than enough time to get the twins through any anxiety starting a new day may bring, now began to feed off of my anxious energy on if we’d make the bus at all.

Because Luca woke up at 5:30am, far earlier than his typical 7:15am stumble out of bed, he was dressed and ready by 7:15am, allowing space for Alex to have a melt-down refusing to put any clothes on, forget wash her face and brush her hair, and Jack to fixate on how he felt like no one liked him at school because he wasn’t able to be the line leader the day before.

We worked to give Alex options for clothes, hoping giving her some control would calm her tears and stomping feet, but when that didn’t work, and the minutes ticked closer to 7:45am, we made the choices for her, providing her in the comfiest sweat pants and her favorite V-neck T-shirt, hoping she would feel that even if we chose for her, we did so with her preferences in mind.

As I carried her clinging to my chest, tears chasing the snot of upset that she held strongly too, I worked to talk Jack through why he felt scared to go to school, trying to pinpoint if there was an incident outside of not being a line leader that we could give him the tools to better understand. Luca followed down the stairs to the garage in tow, clearly annoyed at the whining and crying happening in front of him, but willing to carry on with the routine, knowing what was expected of him.

At 7:47am, all three kids were strapped into their seats, and as I begin to push the ignition, the car let me know the key fob was not present in the vehicle, requiring I run back upstairs to find it. 7:49am is when we were finally able to drive down the driveway.

The bus comes at 7:55am.

The BEST mornings are when the boys have a moment or two to stand outside the car, with their jackets and masks on, feeling pumped to climb the yellow chariot stairs and head to school.

Coaxing them out of the car this morning, I asked Jack to tell me the story of the Gruffalo, as no further progress dissecting school anxiety had occurred, and I needed any distraction to redirect his attention to a happy task, if I wanted any hope of him smiling as he got onto the bus. Luca remained in his seat, firm in his power struggle to have some control. I pulled a bag of gummy bears out of my back pocket, for which he was willing to exit, put on his jacket and mask, and chew happily while we waited at 7:53am.

When the bus pulled toward our spot, both boys were happy, cheering as it opened its’ doors. Jack proceeded to tell his bus monitor about the story of the brave and wise mouse in the Gruffalo, and Luca finished his gummy bears.

They went right to their seats.

The bus monitor had them strapped in by 7:57am, and I remained waving, cheering on their good work.

And then I heard it, just a moment before the bus monitor moved to the back of the small bus to take her seat - the gruff, frustrated voice of the gentleman two car’s back “COME ON!”, he hollered.

I recognized the voice. I knew that voice. I waved a final time as the moment the monitor was safely seated, the boys eyes looked forward to the day ahead and the bus continued on its’ route.

My eyes watched intensely as the cars followed the bus, and I saw his face.

He refused to make eye contact with me, because he knew I’d be looking for him.

He drove with his windows down of that beat-up old maroon SUV, and as he drove past, this time I made sure to look at his license plate.

I made note because when our bus route changed, the first morning when we really understood what 30 minutes meant for our twins’ routine, they had not had as successful of a bus stop as this morning.

There were streams of tears that morning, from both twins. Neither were ready to face the day. The friendly face of the young boy who used to be picked up before them was not sitting in the front seat smiling at them. I had been an anxious mess running late, and we hadn’t had that extra ten minutes to sit and talk about how wonderful the day was about to be, really prepping them for success as they began.

So yes, as I had to physically hand each off to the monitor, while they kicked and screamed, it took a few extra minutes. Painful for all involved, we did our best to try to reassure them.

So when I stood outside my car waving, dancing like a fool, singing, trying to do anything that may invoke laughter instead of tears out of my children, that gentleman honked loudly, hollering to “HURRY UP”, as the bus monitor worked as quickly as she could to buckle the seatbelts of my upset children.

For children on the spectrum, transitions can be very difficult. For my children, auditory disruption, equally so.

We had the perfect storm that morning of challenging behaviors due to the transition, but the way that man’s impatience disrupted it further was uncalled for. Not just because it scared my children, but because it was completely disrespectful to the incredible humans who were showing up for our kids every day to drive and monitor the bus, despite the times of COVID we are all facing. The last thing they need for sounds thrown their way are negative tones of ignorance and disrespect. All they should hear as they do their jobs are the cheers of congratulations and gratitude.

I had been so upset that morning, that I yelled at him the explanation their seatbelts were being fastened, and he needed to find some patience. When he then proceeded to gesture a certain finger at me, my blood boiled to a level that if Alex hadn’t still be strapped in her seat in the car, I would have chased his car down the road. (I’m Italian, it’s really not my fault.)

When he revisited our morning routine this time, although anger resurfaced, I spent the drive to Alex’s school considering what I truly wanted out of the situation.

Was I mad? Sure.

Would I love to see him get in trouble? I must have, or why did I feel it important to note the license plate number?

I mean, what did he do- experience a little road rage? I don’t know what the extra moments of my children’s morning routine made him late for. It must have been really important to get him that upset.

After the six minutes it took to drive Alli, I realized that no, I didn’t need him to get in trouble. What I needed was simply for him to understand the following.

At 7:55am, there are twin toddlers on the autism spectrum, who board a bus on the very busy main road that is on his route. Some mornings it takes less than 3 minutes - an average red light takes 60-90 seconds, btw - and some mornings it may take a few minutes longer. If watching my humble self dance like a fool, yelling how proud I am so they can hear me through the window as I wave and make “I love you” sign-language with my other hand is that upsetting to you, the whole disruption can be avoided by leaving to start your route so that you pass our house before 7:55am.

I want him to recognize that a smaller bus is not simply just another bus. It indicates that it is carrying children and young adults with special needs.

I want him to be aware that when you see two young boys, less than 5 feet tall, they are most likely of an age that they cannot, and should not, be buckling themselves into the seats where seat belts are required for their safety. It’s simply not as fast as when an older, neurotypical child, enters a bus, takes a seat, and once seated the bus driver can take off.

I want to tell him that our son, who has a hard time managing his big feelings, has learned that Belly Breathing can be really helpful in moments where he feels himself turning into a monster. (I’ll even give him the youtube link to watch the Common and Elmo video. It’s a catchy tune!)

Lastly, I want to tell him that our bus drivers and monitors are some of the most under-appreciated front-line essential employees, who truly deserve the utmost respect. If he has ever felt under-appreciated, I would hope he could find empathy in the moments of frustration when he couldn’t find the time in the morning to depart five minutes sooner, to avoid being stuck behind a paused bus that is picking up two small boys at the beginning of its’ route.

There is a reason that things make us feel a certain way: wether it be furious, or joyful; confused, or complacent.

We feel things because it means there is something to say, something to teach, or something to share.

I share this today to remind us all that a few extra moments of patience and grace for each other is far more important than any retribution or transfer of negative feelings we give someone else.

No one knows what another’s going through. No one knows how that person’s day has started, is going, or will continue to go in the moments that follow.

We can, however, share what we know: our journeys and stories, in the hopes that we can work to change other’s hearts and minds to make our world better.

Maybe that gentleman will never see this.

Maybe I’ll find a way to share with him the facts around this situation, so that his perspective can ease up, and he can find the moments to belly breath, not causing any added anxiety for my small children on the bus, or the two incredible adult humans simply trying to do their job.

Or, maybe he’ll yell at me again tomorrow because he can’t find a way to leave 5 minutes earlier to avoid the whole thing.

Either way, if you read this, thank you for being with us on this journey. If you think someone else could benefit from reading, please share - however your time and channels allow.

With love, from that anxiety ridden, goofball mom who dances, cheers, and signs to her twins stopping traffic five days a week at 7:55am. To all the other care takers getting their groove on because it makes their kids happy to know you put their happiness before anything else: I see you. XO

Sink or Swim

Sink or swim?

I feel like when it comes to parenting, I’m constantly asking the question, will they sink, or swim?

Having worked to teach our twins to swim over the last two summers - yes, I said TWO summers, it’s left me reflecting on the concept of sink or swim- and how our parenting prepares them for life.

Raising differently wired children, one of the most comforting comments we’ve been told is that eventually, it will just connect. Maybe their wires aren’t there to begin with, the way a neurotypical child’s are, but the beautiful part about watching a child with autism piece their own wires together is how they study a situation, completely unaware they are in it, and work their way through it, to make it work for them.

Last year, we had asked a neighbor who taught swim lessons, to come by the pool, and work with us to get the twins off their floaties. Mrs. Pickle’s made it a game, which fascinated Jack immediately, as she threw all of his small little people plastic toys around the pool, encouraging he scoop them up the way you scoop ice cream, curling your fingers towards your palm, and rescue them to safety. This game intrigued Jack into participation, but simply did not impress Luca. We continued with Mrs. Pickle’s methods for the remainder of the summer, but were unable to get Jack out of the floaties, never mind Luca.

This summer, about half-way through, Luca became far more interested in sea animals, watching every video he could on them, and thrilled each time he watched a friend jump into the pool - particularly with the excitement in their eyes before they escaped under water. At first, he would jump into my arms in the pool, with his floaties on. And then one day, he asked that we just take them off. After about an hour of swimming, he had made the connection that had been missing last summer, and focused on the thrill of experiencing the underwater life.

But then, when Steph purchased new goggles, it was a game changer. Luca realized he could see under water, and then never wanted to come up for air. The first day he discovered he could swim under water and actually see the entirety of the pool, he began to hold his breath for 15 seconds, only coming up for a gasp in order to return to the water below. It took about a day or two of exploration before he decided he wanted to get from place to place, and worked on moving his body to get around the pool.

Just like that, we had a fearless swimmer, who was happiest under water like a scuba diver.

Jack watched his brother accomplish this quickly. He had taken his time learning the scooping method, and how to kick to go faster, but wasn’t quite ready to let go of his floaties. A week into Luca’s new freedom, Jack decided that he would like his floaties unbuckled, where he hung on to the vest of them like a noodle, staying by the steps of the shallow end. It took a few days to be comfortable with this new bravery, before he decided to stay on the steps without them. He also practiced with goggles to put his head under water, little by little, before he was comfortable enough to really swim. Just last weekend, he discovered that he enjoyed swimming underwater, and that if he stayed near the edges, he could pull himself up if he got tired. As he grew in confidence, he remembered to “scoop” the water like he had been shown, to help him swim further each time.

Two boys, born merely minutes apart, and completely different paths to the same out come.

Their little sister, neurotypical until we are told otherwise, has watched their aqua accomplishments, and has decided that she too, can explore the water equally. Although we accommodated by holding her in the water when we are swimming with them, she has not realized that she has yet to learn to swim.

Just yesterday, as she watched them joyfully splash, she walked down the steps of the pool. Both Steph and I said, “Alex stay there please” and “Stop” as we rose to our feet having not yet gotten into the pool, expecting to put her floaties on her. Her feet continued down the steps, and her head dipped under the water. Right behind her, I pulled her up, and looked at her blank expression of shock staring back at me. She wasn’t scared, as much as confused because as far as she could tell, she had done exactly as her brothers, but met a different result. One that ended with her fully clothed mother holding her waste deep in the pool.

In that moment, the concept of connecting wires on their own, vs having the wires set in the first place, really resonated for me. Alli learns by watching others. From the youngest age, she’s been able to naturally do things, without hesitation or question. Things that never connected for the boys, and some still have yet to. But in this moment, the boys flourished in learning how to do something at their own pace, in their own time, and with such pride and joy that she felt fully capable to do so too.

As parents, I feel like we’re constantly wondering - will they sink or swim? Do we give them floaties, or let them figure it out? Do we need to ask someone to help teach them, or can we do it ourselves? What’s the right balance? Throw them in before they are ready, or let them take their time?

Pretty sure the jury’s still out on that one for us. But I can say that in those moments that you get to watch a child flourish, it’s wildly beautiful, and completely satisfying as a parent. Alli may have learned that she wasn’t ready yet, but she believed that she was her brother’s equal, and we were a moment behind her to pull her to the surface, so that the lesson wasn’t a much scarier one. Maybe that’s the balance in it all. Teach them they can do anything, fearlessly and foolishly when necessary, and be there to scoop them to safety in the moments when needed to avoid detriment.

Here’s hoping balance finds you as you are helping your littles (or not so littles) to sink, or swim. Xo

Papa's Beach

“You can never cross the ocean until you have the courage to lose sight of the shore.”

One of the silver linings this summer, after becoming a full-time stay-at-home parent, was extra time at my favorite place, and watching our boys learn to love it as much as I do.

Our family’s small cape cottage is located steps away from Onset Bay’s shore line. Only a few houses, and cobbled steps stand between the perfect porch to sit and watch the day go by, and a beach where hermit crabs and minnows could provide hours of entertainment for the dozens of Aprea cousins that filled my childhood summers.

Yes, for our boys, it was a little different this year… as the cousins and we did not adventure together, finding separate days to visit our quintessential happy place, respecting quarantine guidelines… but the memories created still felt the same.

Where we used to only be able to visit on a weekend, or an intentional vacation day over the last few years, this summer provided open-ended opportunity to call up Auntie Sammy and Papa and ask for a few hours together playing in the sand, and walking the pebbled shore at low tide.

This last visit, before the summer days come to an end, and school returns to session next week, was different than the many over the last few months, as our bay was covered in fog, and storms continued to roll through.

We explored the shells at high tide, walking the deserted beach with the boys.

Although our visits to the beach typically last only a couple of hours, and we spend more time in the car then we do with our toes in the sand, my heart is full as I sip my coffee and share this with you. Those hours of unexpected memories in my favorite place are irreplaceable in what they did for my soul this summer, because they reminded me of the magic of “Papa’s Beach”.

As the daughter of a sailor, if I’ve learned anything from the ocean over the years, the first line of the post rings true: “You can never cross the ocean until you have the courage to lose sight of the shore.”

This last year’s adversity has served as a defining moment for our family, and for my parenting in particular. Autism’s shore line provided a stability in routine and depending on the boys’ teachers, administrators, and aids to guide us on how to navigate parenting autism. When that was removed, there were days that I felt like I was lost at sea, without a life boat, or even a life jacket, treading water in exhaustion and fear.

But once I stopped fighting the change that was drowning our need for relying on others to teach us on how to be there for our children, I found my courage to stop looking back at the shore line, realizing the muscle memory could kick-in long enough to start to cross the Parenting-Autism-Ocean of unknown again.

Returning to the beach gave me quiet time in the car, most days, where I could put in my airpods and listen to an audible book, or a spotify playlist that didn’t consist of “Who let the dogs out” or a Disney Playlist, and I could take in an ounce of self-care.

It gave me time with my sister and my father, and occasionally, my step-mom and brother. Although we all weren’t together with the dozens of cousins and aunts and uncles like we’d prefer, particularly after losing Nana, it still provided the comfort of just being around them, and continued opportunity for our children to know them.

Trips to the cape gave us an escape, the three musketeers that we were, with an unknown structure that had flexibility and lacked expectation. If it was a great day, and everyone was happy, we could stay as long as we liked. If it was a tough day where the twins weren’t having it, we could simply be proud of the attempt, pack back up in the car, and head home.

Returning to “Papa’s Beach” as the boys fondly call it, reminded me that even on the gloomiest of days, when you can’t see past 20 feet in front of you, all you need is time for the storm to pass, and the shoreline to appear again. Courage isn’t always just about being able to leap into the next adventure, but also to remember where you’ve been, and how far you’ve come.

Here’s hoping courage continues to find you, too. Xo

Autism Won Today

Someone asked me what it meant when I said “Autism won today”, and I realized that it may be a common phrase heard, but not understood, and the explanation may be helpful if shared.

As I’ve explained many times, each child is unique, just as each human is unique, and because of this, each diagnosis, and the behavior to it is unique as well. For our household, the following are times in the last week that I’ve used the expression “Autism Won Today”:

• When Luca broke our TV screen protector, that we purchased to protect the new TV after he broke the last one.

• When Jack’s inability to have a calm body meant that he kicked his sister so hard in the face it left a heal of a bruise on her cheek for the week. Have fun explaining that one to daycare!

• But when autism really won this week, was when I sat in the car, after carrying a kicking and screaming Luca, who yelled “Help Me. Listen to me. I don’t like you”, clawing at my arms and pulling my hair, as we passed a security guard. I sat for a full 60 seconds, tears streaming down my face, wondering if he planned to follow me out of the store - but thought better not to because we looked to be above his pay grade for that kind of drama. He didn’t know that Luca was disappointed in their lack of sea animal figurines. 

I never say “Autism Won”, by itself, because like most care-givers parenting autism, we are in constant battle-mode- and even if it gets us for a moment, we are agile… we fight back… we learn… we adjust… we recollect ourselves and return to the fight stronger, wiser, and faster the next time.

Want to know how I won this week?

• When Luca was able to tell Jack, “You’re too loud Jack. Please stop.” In FULL sentences, and he turned and went into the room on his own, like I have been showing him for weeks.

• When Jack chose to “hulk smash” on the trampoline instead of pummeling Luca, working out his frustration on the bounce versus the brother.

• And when I wrote this blog post, while three kids sat at the table, eating their dinner, and my wife’s dinner was simmering on the stove. Yes, all three had iPads, and I’ll admit it because I’m all about the honesty here… but if you judge that last part- you can go sit on your smug mountain and watch from a distance because judgement is not welcome here. I’m kicking ass and taking names today. Period.

Here’s hoping you are in the lead today, or that even better, you’ve gotten past the need to keep score, because living in the moment of it has become enough. Keep fighting… if anything, just keep going. You’ve got this. And like Glennon Doyle says, “We can do hard things.” Because: we can. Xo

Until they tell me otherwise...

I was talking with another mama today about our kids (shocker, I know), about who we hope they’ll be one day… and I felt Glennon Doyle’s words in the back of my head as I shared the story of the pretty dresses hanging in Alli’s closet that she refuses to wear.

I shared that I had adorable dresses I had bought for our daughter, that made her cry and scream in refusal. My favorite was a light blue and white pinstriped sleeveless, purchased for her second birthday photoshoot. I had set up sunflowers and balloons, and knew if I could just get her to sit for less than 5 minutes, I could permanently freeze the time in place, and remember that moment for years to come. However, when I brought the dress down with coordinating outfits for her brothers (incase the stars aligned and they all decided to pose), she was beyond distraught that it was she who had to wear the dress.

I look back and ask myself- why did I not just give her the white polo and navy shorts like she asked?

What would it really have harmed?

I had this picture of capturing our precious girl “while she would still let me dress her” and got caught up in what I thought it needed to look like, instead of just letting our Alli be Alli- the truest form of what she wanted to be at age 2 in that moment in time.

“Until they tell me otherwise…” is the way Doyle phrased it, when sharing with her audience in her memoir, “Untamed”, that she is raising two daughters and a son.

Until they tell me otherwise…

What an AMAZING way to start the description of one’s children.

As they are little, and two of them still finding their words, there is still so much self-discovery for them, that I feel as if this journey has yet to be defined. For Alex, the fact that she has no interest in dresses is merely a piece of it, not a dictation of what’s ahead. She also loves all things creative like music and arts and crafts, and her favorite thing in this worlds is a pink and white giraffe security blanket that we own 4 of incase one gets ruined.

Growing up scared to live my truth, one of the most important lessons I hope we teach our children is that no one else can be you. Plain and simple. Whoever it is you wish to be will be fully supported by us. No exceptions or expectations otherwise.

Where some children know by the time they are out of diapers, I did not know what my truth was until college. Partly, in fairness, because I never allowed myself to really consider it. I knew I was different. I knew I was scared. I knew I was not happy. I knew I felt unsafe to be true to myself. I battled multiple eating disorders, and struggled with self-harm, because I felt so trapped inside a body which I did not feel safe that I didn’t know how to breath, let alone really be just me.

I share this because, as someone who has grown older, wiser, and able to own the shame in those darker days, I can tell you what it feels like as a child to just simply not know - having not felt safe enough to explore what the answers may be, let alone ask the question.

In a day and age where our society is more accepting, but yet, still discriminatory… where people hold no expectations outside authenticity, but others require you to fit in their uncomfortable box… where some can celebrate the rainbows and uniqueness of every human being, and others still see those colors to mean less… it’s crucial that we continue to change hearts and minds by sharing our story, and it must start with our children.

While on the playground today, I heard a child say to my son that he shouldn’t be wearing pink crocks, because they were for girls. He said, “I like them”, and turned and walked away from him. I could not have been more proud.

It’s ok to dream about the potential somebody’s your children will be one day… but it’s truly important to make them feel comfortable and safe enough to simply be them, whatever discoveries they make along the way.

Until they tell us otherwise, we are raising two boys and one girl; each unique and incredible in their own way, their outcomes still yet to be defined, but so wonderfully open for possibility.

XO

The Special When

When we found out we were pregnant, we started to imagine their futures. We started to think about what could be for them one day. 

When we picked out their names we looked to reflect a path we hoped would be possible- providing them strong, dependable, serious and relatable names.

When we pictured what their paths may look like, we thought about this close bond that they’d have as twins. They’d grow up always having each other… a partner in crime… a shoulder to lean on… someone who would always have their back. 

When we navigated those sleepless nights of newborn twins, juggling breastfeeding and pumping, diaper changes and tight swaddles, we told ourselves… this too shall pass.

When they rolled over for the first time, we thought, “A milestone! we hit a milestone!” and anticipated so many more milestones to come.

When we talked about their futures, we gushed over the endless potential sports they would play, the potential jobs they would have, whether or not they’d want to go to college or just jump into learning about the family business… We promised each other we’d support whatever dreams they might have… 

When the boys were diagnosed with autism at 18 months, we were in denial. We thought their speech was delayed because they were twins without older siblings and had never been in daycare. When doctors said they weren’t sure Luca would ever talk, we responded with determined disbelief that the experts had no idea what they were talking about. 

When the boys hit age two, and we started to really learn about what autism would mean for our family, we started to understand how severely unknown our road ahead was, and how all those assumptions of hopes and dreams we had for our boys shifted…

When the sleepless nights returned, on top of bringing another newborn in our house, we started to wonder if we’d ever sleep again.

But then, something clicked… 

When we learned about the magic of autism, we dropped the self-pity and the potential doom autism could mean for our children, and focused on the incredible road that had yet to be paved would look like.

When they started to make significant progress in school, finding words we weren’t sure we’d ever hear out of their mouths, we leaned in hard to asking for help, being open to whatever autism may bring and researched wherever we could to learn about how to be the parents they needed.

When Jack went to his first birthday party of a classmate, played with friends, and even sat down to sing before cake, we began to see glimpses of that life we thought may be ahead for our boys, both despite autism, but also because of it.

When COVID hit, and they took away the routine and resources the twins received from their school, we thought it might be temporary, but stayed open-minded to our ability to show up for them.

When the weeks passed, and the sleepless nights outnumbered the ones with sleep in them, our tired bodies began juggling the chaos and anxiety the pandemic left on our family. We began to have a hard time keeping perspective that the regression happening before our eyes with the twins wouldn’t be permanent. 

When I reached out to their academic team, and then the administration above them, as well as the Super Intendant begging to know what plan lay ahead this summer, when only the students who were in serious need like our twins would be in the school district, limiting exposure for the virus with plenty of resources to get our twins back on track, we found very little perspective left to focus on, as their optimistic promises to put a plan in place continued to fall flat.

When we learned, just last week, that the summer school their medical diagnosis, and assessments of their incredible academic team assigned them, would be limited to hourly increments daily, we started to feel defeated. 

When we look at the magic in their autism now, we see it being buried by their anxiety, need for routine, longing for their peers, and regression that has shown to potentially have permanent damage.

When we look ahead to their future, we worry that the lack of what we can provide for them right now, during however long this pandemic keeps them out of school, will seriously effect who they could be, the life they could live, and the choices they will have when the time comes - forget what sports they will play, if they will want to go to college, or what jobs they may want.

The special “when” for children with special needs is being ignored with the severity of everything going on in the country right now, and although it may fall low on the priority list for so many of the talented decision makers out there who could do something, it remains at the top of our priority list as their parents.

So I ask you, WHEN will the medical diagnosis that outlines what our children need be enough to get them back on track, so that their many special whens of the future can remain bright, full of hope and possibility.

When?

What do you need?

“What do you need?”

The question is banging at the door I’ve closed in my mind as I lock myself away in my mental closet of a pity party, sitting on the cold dark floor, letting the tears continue to fall.

“What do you need?” It demands from me.

Like my four-year-olds, I sit in the time-out crying, ashamed, and unable to find the words. 

“I don’t know!” I want to shout back. “Don’t you think if I knew, I’d know how to ask for it? Or better yet, get it for myself? I’m fully capable.”

As I breathe, I can feel the weight in my chest and I whisper… “I need this pandemic to be over.”

The lack of response confirms what I already know, that it’s not over, not even close, and it may get far worse before it gets better.

“What do you need?” The ask is softer this time, almost with more patience and understanding.

As the tears continue to fall, and I find a steadier breath, I try to think logically, of actual problems I’m trying to solve, not just the overwhelming feeling of weight… What are the little things that could help? 

The obvious come to mind: I need a break. I need sleep. I need to not answer to someone long enough to get myself from the 10 level of breaking, back down to a 2 or 3… that livable weight of reality that is easier to manage… When I’m at a 2 or a 3, if a twin pulls the other’s hair, or throws their cereal, a simple “whoops, we need gentle hands”, or “oh no, our cereal escaped our bowl” is my automatic response. When I’m at a 10, or a 12 like I feel like I am now, after another sleepless night with autism, my responses are not quite as kind. I’m a shadow of the parent I want to be, unrecognizably cold and shut down.

“So, what do you need?” it probes again.

How do I get to a 2 or a 3? How did I before COVID?

I had scheduled time… scheduled time that was mine… mine without interruption. Yes, there was a list of things to accomplish, but it was my choice in how they were done. 

It’s been months since my children went to school, or could be taken on adventure for a few hours so I could find quiet. Yes, I could leave, but where would I go?

“Last time… what do you need?” I know my time is running out. The violins are quieting. And reality is calling. Game time decision. Wash your face, girl, or let the world see you crumble.

The truth is… I’ve operated on less sleep. I have three children, and survived through breastfeeding twins. I’ve done this. My muscle memory is already trained and built. I think I’m just resentful that I thought this chapter of my life would be over by now, but instead, plays on repeat.

The truth is… I do have help. I have an incredible nanny who comes five days a week to help me navigate what lately feels like impossible moments of parenting autism during a pandemic to navigate. 

The truth is… I find breaks. We gave up working on the twins’ school weeks ago when the baby napped so I could take the break. And on the nights I really don’t sleep, those two hours are enough of a power nap to keep me on track.

“Think”, the voice smiles, “What do you need?”

And then it hits me.

I need to know it gets better.

I need to know we’re not alone in this, and that someone else has survived it.

I need to know that this type of chapter in raising littles with autism, or twin boys, or just three kids in general didn’t destroy someone else’s marriage, turn them into a cold, shut-down and mean monster of a person, or kept them from giving up completely.

I need to know that someone else’s special needs children who were up all night every night, (we’re going on 17 out of 22 nights right now) eventually slept through the night.

I need to know that kids will go back to school, and that the administration responsible for making that happen is aware of the repercussions this time is having on children who’s needs can’t be met with remote learning.

If I can find the lighthouse to focus on, I can weather the storm, and ride the waves. I can refocus, and celebrate the small wins that get us inches closer to that brighter destination. Not sure what it is yet, but anything is possible when you are willing to work for it, harder when necessary, never giving up.

I can feel my body rise, my hands find my cheeks to wipe the dampness, and my feet find the steps before them that walk me back to reality. 

This may not be over anytime soon: the extra strain that this pandemic has placed on so many of our realities. But if I can’t control the uncontrollable pandemic, I can choose to accept it, and only focus on what I can control. 

Dear reader… if you’ve been there, and gotten through it… share so that those of us who are in it, know we are not alone. And if you are in it with us, if any of this resonated, know we see you, and you are not alone. I have no idea how to fix it, but I promise to keep sharing in case it helps in any small way. 

Here’s to the lighthouses that make the waves of any storm feel possible to weather. May you find yours soon. XO

Our Village

“It takes a village”, they said.

I can remember when the twins were born, that first day in the hospital, how we disrupted the maternity wing with so many visitors. Our phenomenal nurses kept trying to limit the amount of visitors, despite my dismissal of their concerns, when finally I had to say “they are our village. We just had twins, we will need them. Let them enjoy this moment too.”

Our village, both the extended, and the intimate, has shown up in ways for our family that I don’t know many of them realized they signed up for, even more so since the twins’ diagnosis. Having three small children, two with particular needs, we threw our pride out the window two years ago, and learned how to ask for help when we needed it, sometimes too often. When we’ve had to lean on the shoulders of our village, we’ve had to lean in hard, sometimes placing an unwanted burden.

Our immediate family, particularly my in-laws and my sister, have shown up with such repetition and selflessness, it’s almost become an expected appearance, and one we have to remind ourselves to vocalize gratitude for, because their efforts are offered and by no means required. Granny & Pop-Pop, the Saturday date nights, and continued drop-ins when we need a moment to breath, are sometimes the only way we can recharge enough to be present for our family. Auntie Sammy, your energy and love you shower on our children is not only reciprocated, but clear in their adoration for you as their favorite person. We are eternally grateful for the three of you, and the rest of our family members - THANK YOU for always being our life-line.

Our chosen family, the friends who continue to show up time and time again, that are weaved into the framework of our lives in such a strategic and permanent way, shower us with love and support in ways that I hope we can live up to deserving one day. They sacrifice their time, energy, and more often then not, physical labor, to help us during our times of need - and this is just one moment of public praise and gratitude I thought appropriate to take - THANK YOU! (You know who you are.)

Yesterday, when I asked for help from our extended community, you showed up in ways that I didn’t know possible. Friends from grade school to college, neighbors and community members, and new friends that I’ve never met in person, but continue to follow our journey through this platform, went out of their way to try to help us in our time of need. The support that came after the request was simply heartwarming, and one of the most beautiful moments of this journey for us. THANK YOU all. Not only for following our journey, for sharing this blog with others when you’ve found something helpful, and for messaging, calling, texting ideas that you think may help our family. We will continue to welcome any and all suggestions with open and grateful hearts.

I just needed to take a moment, to say “Welcome to our Village.” We are so glad you are here, and fortunate to be part of yours. Call on us when you need us, and we’ll continue to show up as you have for us.

Sincerely, Christina. XO

We Need Your Help

It still haunts me… the moment when our son ran into the house, tears streaming down his face, screaming as his scratched at his face furiously. It paralyzed me. I found a way to move toward him and try to comfort him, but it required following him for a matter of 10 minutes trying to calm him down.

I had watched the scene that sent him spiraling before he entered the house. The neighbors had a small fire going, about 15 to 20 feet from our yard. Although Luca stood in his “trees” which are really just large weeds that have grown to create this super cool path for the kids to play in, I thought he was a safe enough distance. The wind that day, proved me so very wrong. He watched the fire intently, trying to understand it, listening to it crackle. But then a large gust of wind took the smoke at him, and as he watched it like a rushing wave on the sea shore, it’s current taking him under with out warning, the smoke attacked his small body, with sensory over load. He couldn’t breath, and you could tell it stung his eyes, as he raced inside in a panic.

I wet a facecloth and held it over his tear stained face to try to stop the burning. I sang quietly and held him, rocking back and forth, hoping to calm him down. My wife was outside mowing the lawn, some where in the front where I couldn’t reach her. I wasn’t sure if he was allergic to the smoke or whatever was burning, or if he was simply scared and just couldn’t tell me.

That’s one of the hardest challenges we face, while Luca is still finding his words. He isn’t able to communicate what he needs as well as Jack, and it requires an elimination game of sorts. As I was parenting solo, I did the only thing I could think of to find answers that might help. I hopped on Facebook, posted about the situation, and hoped someone in my network could give me the words to explain how he was feeling when Luca couldn’t. There was instant support and things to consider, and it helped me triage faster than I ever expected.

Luca calmed down, his eyes relaxed and the puffiness and redness faded. He drank water and calmed his body on the couch. The tenseness in his muscles subsided, but the fear in his face remained. We kept a close eye on him all night, as he flinched at certain sounds, his eyes always searching the outside with caution, clearly traumatized.

I think, as parents, we’re always watching out for what could potentially harm them, trying to either shield as best we can, or hope we’ve given them the tools to face it head on, feeling prepared and capable. One of the most challenging parts of Autism with littles, when they have a sensory processing disorder, is that many of the things that could trigger them are foreign to us parents. The way they also process trauma, without the ability to talk through it, can seem equally foreign.

Luca stayed inside for three weeks. Our boy, who I imagined living in the mountains one day, due to his need to be in free open space as often as possible, had now trapped himself in the walls of his home, rushing to close any door when open, and crying in fear anytime you asked if he wanted to go outside. He would watch from the windows for any glimpse of smoke, and studying our neighbor has he continued to chop wood in the same place he had for months. About a week after the experience, he had some how found a video on youtube of a crackling fire, and had started to play it repeatedly for comfort. I kept expecting enough time to pass where he would eventually just go outside. But after three weeks, I was starting to get really worried.

I couldn’t understand it. I couldn’t find a way to help him. I asked his teachers for help, and had even reached out to a friend who is a psychiatrist for a referral to someone local who could help us.

We took a chance of bringing him to an open field with his siblings, as I had hoped to take their annual photo with the apple blossoms. Although we weren’t able to get any image to be compiled in photoshop of the three kids, we were able to get Luca to run outside again, after parking in two different areas before he was interested in exiting the car. His feet hit the ground, the sun shined on his face, and you could see his body breath a sigh of relief. It was such a win for us. We let him run until exhausted, packing the kids back in the car with renewed hope.

We had opened the pool the last week of April, but decided to turn the heater on earlier than planned, just to see if he would go through our backyard to get to it. I went swimming first, sending him a video through my wife who was inside with him. He giggled, but still refused to go outside. The second day, we decided to just bring him out to the pool. My wife carried him, reassuring him he was safe, until he was in the fenced in area with 30,000 gallons of heated delightful water. That boy’s smile lit up ear to ear, he stripped out of his clothes, asked for his puddle jumpers, and jumped in with glee. It’s been 5 days now, and there hasn’t been one he hasn’t spent hours swimming.

The thing is, unless he’s swimming, he still won’t go outside. I still can’t understand it. A swing set that was donated by another family, and stained by my wife’s team, is sitting in our yard. I’ve worked, with the help of an amazing friend, to clear the area, removing hundreds of large obnoxious weeds, and level the ground. I enlisted my sister to help me pick up all the large, heavy, half-assembled pieces from my wife’s shop when the stain was dry, to get them to our back yard. (We did have to ask for muscles outside our own to get two crazy pieces- thank you friends who lifted those!) I even have 50ft of turf rolled beside it, ready to be laid out. Today I’ll spread a few yards of loam to finally level it, roll the turf out and hope we can start building the swing set this afternoon.

What worries me is I don’t even know if that will be enough to get him to play outside again. And what if it isn’t?

As a parent, I feel like I ask myself what-if’s so often, I miss being present, or at least as present as I want to be. I’m so worried about the potential, that I forget to live in the what is. I feel like lately, I’m always worried about what I can’t control, and now that I’ve found myself in a situation with real trauma, it’s testing my ability to show up and be the parent our child needs.

I’m working every possible answer I can control, by giving him highly preferred tasks in the hopes he can rebuild his muscle memory of feeling safe outside. If that doesn’t work, we’ll most likely need professional help, which may not be the easiest thing to obtain during these crazy pandemic times. Anything to shape the fears he has of going outside to be saved as a single memory, not the current reality of what being outside really is.

If you have any ideas, please share. I don’t typically ask questions here, but as I’ve connected with so many incredible parents who have walked in these shoes, or are on the journey as we speak, as well as phenomenal teens and young adults with autism, I am hoping someone might have something I haven’t thought of. Some way to understand what may click for him and make him feel safe again. Because if this swing set doesn’t work, I’m not sure what to do next. Thanks in advance. XO

The Decisions We Make

Have you found that you find kindred spirits in the strangest places?

Just recently I took on a new endeavor to try to help bring some money in during such a strange time of this pandemic. In that I found the most amazing teammates, incredible women who are also trying to provide for their family and create opportunities for other women to do so as well. Introducing myself and sharing my story, I found a mom who I connected with right away, as her son too, has autism.

She was warm, and kind, and that kind of person that if she lived on your block, you would be asking for play dates every day just so you could become best friends. She has been so supportive of the way I share our families story, that I when she asked my advice on something, I knew she would be comfortable that it inspired the following post.

As parents, particularly while our children are little, we are faced to wonder what of our bigger decisions, and the domino effect of their results, our children may have an opinion on when they come of age to form them.

There have been decisions Steph and I have made as parents that we know our children may have opinions on, from the serious to the insignificant. Some serious decisions, like that we used an anonymous donor to form our family, or that we only chose to have three children despite that we had additional frozen embryos we could have continued trying to give them the next partridge family with (we are pretty musical after all), tend to keep us up at night. Smaller ones like that all their pictures until the age they can handle Going to a barber will showcase haircuts done by Momma Steph with her best skill, and one or two by myself that had a little more Jim Carey feel with those awful straight bangs, or that I let Alex have two Oreos instead of one when she asks because it makes her happy, or that we were dog people and never let them have a cat (or a lizard, snake, spider, etc because that is NOT happening) might be something they hold against us for whatever silly reason.

Truthfully, one of the hardest parts of sharing our story, isn’t just how scary it is to be vulnerable, but is actually the intentionally it takes to make the tone represent something the boys will be proud of one day. I know one day they hate that people know so much about them. My hope is that they understand the intention behind it is to help others like us know they aren’t alone, and to shed light on the magic behind the diagnosis, reminding people that no one is merely one thing or label. Any one little thing about us, is simply that: one thing. It’s one part that makes up so much of the unique beauty we bring to the world; ever growing and changing to be who we want and need to be.

In short, if one day my children question the decisions we made, I hope my heart is just proud to have raised children who can think for themselves, and can form, defend, and believe in their opinions with enough conviction and passion that they aren’t afraid to disagree with someone they love. Maybe they’ll teach me a thing or two one day, that shapes the person I will become because of them, as we know the decisions we make for them today, shape them to be the person they will inevitably be.

I believe if we lead with love, patience, humility and grace, making every decision with good intention, then we can simply let the pieces fall where they may, and everything will be alright in the end. Good humans raise good humans, it’s as simple, and takes as much work, as that. Xo

If my son was in your care...

Before COVID-19, a good friend who is a social worker asked me what advice I had for her as she worked with children on the spectrum in hospitals. At the time, I had some thoughts, but never got them to paper.

As I sat today, during one of the tougher days with the twins, I found myself grasping for perspective, and my thoughts landed back to that conversation, but how it relates to our current state. What advice would I have for anyone that needed to care for either of our boys, but particularly Luca who hasn’t found all of his words to express what he needs, should he be put in a situation where I could not be present as his advocate, caretaker, and comfort. 

Although the emergency rooms are not filled with toddlers his age, we just learned of the death of one while we watched the news last night, which means it could happen. That in mind, if this is of any help to someone who’s responsibility is to care for a child like Luca, here’s the only advice I can think of that could be helpful. 

If you find yourself needing to care for a boy like ours, in a situation where we could not be present, he would be in fight or flight mode... and he hasn’t let me cut his nails this week, so if it’s fight mode, he will draw blood and leave a mark... like the one he dug out on my chest today. Please be gentle if you need to protect yourself. He is little, and even though he is fiercely strong, he is our baby, and he’s just scared.

If he runs from you, you will not catch him, as he is fast on an average day, but could outrun a championship linebacker when he’s scared... and his little body can fit in places where you won’t be able to find him, taking away your time and energy to search for him when you are needed somewhere else. Small spaces will make him feel safe, and he is far too good at hide-and-seek, so please don’t let him run. 

When you finally catch him, he will laugh at you when he is scared or sad, worst if he is mad... but he will break your heart when he finally cries, because the anguish in his big hazel eyes will pierce through your heart. He loves compression, so if he lets you, please hold him tight… give him a moment when he thinks you are us, and when you feel his body release, please hold on for another minute longer, so he knows he’s not alone.

When he finally starts to trust you, I hope you have an iPad, and YouTube installed on it. Make sure it’s charged because he will use every ounce of juice it has to calm down by focusing on finding his videos. 

And please, for all the love there is in this world, have some kind of box or bag of figurines or cars that he can inspect, line up, and use to take his mind off being so scared. Even five or six pieces to give him enough of a grouping to require order and sorting will be enough. Get creative if you need to. 

Lastly, by no means am I trying to tell you how to do your job, as I know that what we are asking as a society during this pandemic is already too much, so I hope you don’t take any offense in the extreme measures I’m asking you take with my son, or children like him. My job is to make sure he doesn’t end up there in the first place, so we will continue to stay home, wash our hands religiously throughout the day, sanitize everything, and pray that our children do not end up in your care. 

But if for some reason my son, or a child like him, does end up in your care, please don’t worry about anything I just asked of you… because there isn’t anything that will stop a parent of a special needs child for being there when their kids need them… not even COVID-19, so I won’t be going anywhere… you just keep on with the good work you are doing doing your job, and I’ll keep on doing mine. 

In the mean time, I’ll keep remembering that this too is temporary, and all the sleepless nights that he is having without school, or a dependable routine of *OT, speech, and one-on-one attention from an aide, and scheduled dependable expectations with learning and social interaction… this too will all be a memory eventually. If you’re strong enough to leave your families every day to protect, care for, and save families like mine, the least I can do is work to keep my family out of your care. 

*This post originally mentioned ABA therapy, as the twins attend a school that incorporate some principals of ABA therapy. As we are two years into the diagnosis, all I know of ABA therapy is that our school has deemed it as the least restrictive environment of it, and any time I’ve mentioned it in the past, that’s what I’m referring to. I’m grateful to those who have clarified what it entails, with far more experience than I. I am merely trying to share our story. Thank you for being here.

Piper

Hi, I’m Piper.

Could someone tell me what’s going on?

My little humans haven’t left my house in weeks. It’s never quiet any more.

I was just getting use to having Mom home during the day, and the extra attention she’d give me when everyone else was gone. Now, I’m lucky if she gives me a snuggle when I climb into bed at night.

Momma still leaves the house every day, but when she’s home, I can tell she’s stressed. When she rubs my belly and scratches my neck, I can feel how tired her hands are from working all day. She hasn’t wanted to wrestle in a few weeks either.

Don’t get me wrong, there have been some perks…

Like the snacks the littlest human gives me regularly - she’s a good sharer. She and I like a lot of the same foods: chicken, peanut butter, and bacon. Now that she’s tall enough to get to the cheese drawer herself, she can be easily convinced we need another cheese stick,and that she only wants the first few bites.

Just the other day, one of my little humans, who doesn’t typically like me, and who pulls my tail for no reason, rubbed my back with his foot when I laid under the table. After dinner, I asked him if I could lay by him on the couch, and when he didn’t tell me “no” or to “stop”, I approached with caution, his eyes watching me the whole time. I gave him fair warning, eased in next to him, and felt his body get calm near me. He even put his hand gently on my coat.

While I laid with him, I could tell my little human wasn’t sure what was going on either. His energy was restless… and almost scared. I just laid there with him for a while until his breathing settled. He doesn’t talk much, so I wasn’t expecting him to tell me what was wrong, but it was nice to feel needed by him.

The other little human, the one who doesn’t stop talking, he knows my name now. He even tells his friends about me when he’s on the screen. Just yesterday he told me to say hi. Maybe soon he’ll want to play with me more than just making me the bear during that hunt game they play every day.

I love my humans… I really do… but…

Could someone remind them I’m out of Greenies? I saw Mom’s stock of my food in the basement with all the little humans food - but I don’t see any more greenies.

And maybe ask them to go back to school? I was just starting to enjoy how happy they were when they saw me from the bus window.

Thanks in advance… - Piper.