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

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

Sleepless Nights With Autism...

I’ve been meaning to write this post since the first time I shared what a #sleeplessnightwithautism actually looked like in our household on Instagram… Prior to that public share, family and friends hadn’t really seen the picture of what one of our very typical nights without sleep looked like. As I had explained it to folks, sharing that when Luca would wake up in the middle of the night, there was no other option than to give him the iPad and wait it out, the very common response I would get was that the screen was keeping him awake and I should just let him lie in his bed until he fell back asleep. When I would share about Jack’s sleep walking, that it could be upwards of four or five times a night, and worst when it began with a night terror, the common response would be to not let him sleep walk, and to lock him in his room until he grew out of it.

Let me clarify a few things, right off the bat. We sleep trained our twins, just like we slept trained their neurotypical little sister. Alex has slept through the night since she was 2 months old. It just wasn’t our luck with the boys.

The twins were small at birth, Luca was borderline premature, but they didn’t want to separate them, so neither were in the NICU. They remained peanuts, which I do believe effects children’s ability to sleep through the night, because full bellies definitely make it easier.

During the first few months trying to breastfeed twins, I would get as little as 30min naps in between each session. One twin would take about 30 minutes to feed, then I’d have to put him back into his rock’n’play, and rock him with my foot as I fed the other twin for another 30 minutes. After I would get them both back to sleep, I’d have to pump for 45 minutes, and as the twins fed on a 3 hour cycle, it would give me 30-45 minutes if I was LUCKY when all was said and done, to nap before I started all over again.

Now, yes, Steph would and could help. But after the first couple of weeks, when she was back at work, it was nearly impossible for her to. She was on high ladders painting all day, doing physical labor, and making strategic decisions - all things that you cannot do on the lack of sleep (trust me, I know), so I took on the brunt of it, only tagging her in when I needed her.

It did get easier once I stopped breast feeding, and switched to bottles, removing the need to pump, and giving me longer sections of an hour and a half to two hours in between sessions. We had tried sleep training at 4 months, but they were so adamant with not wanting to do it, that I simply couldn’t handle standing outside the door while they cried. I chalked it up to that they weren’t ready. We tried again at 6 months, and same thing. Finally, at 10 months, our amazing nanny at the time said, '‘I can’t watch you do this any more. You are a zombie, and you deserve to sleep.” The twins didn’t need to be getting up to eat any longer, and could at that point make it through. She wrote out instructions, explaining that I was to put each twin in their crib, say I love you, shut the door, go pour a glass of wine, and then text her to hold myself accountable. It was torture. Jack stood up crying for 57 minutes straight before he caved. Luca just laid there and played until he fell asleep, but Jack fought it tooth and nail. The second night, Jack only fought it for 42 minutes, and the third night was under 30 minutes. Finally, on night four, he fell asleep by the 15 minute mark. It had worked. I was about to get sleep again.

The twins were great sleepers in their cribs for an entire year. If they woke up in the middle of the night, they would eventually put themselves back to sleep. But as I was pregnant with Alex, and we were trying to think about making that transition to a family of five, we thought the boys would be ready for big boy beds. Jack had been climbing out at this point, onto his night stand, giving us a heart attack each time, and we knew we needed a crib for Alex, so we bit the bullet. Steph got them a gorgeous set of matching twin beds, and we made a big deal about it as the summer started. We had two months to get them used to them before she came.

But that summer was when the diagnosis was official, and many of the characteristics that come with autism were starting to become more recognizable - including what we now call “sleepless nights with autism”.

Those two months before Alex came were excruciatingly hard. Steph and I would each take one twin, reading them stories, and then laying with them in bed with the lights off, sound makers on, etc. We had tried to make sure we ran them around every night to make them tired before bed, we removed screen time, we worked to fill their bellies and have a really strong bed time routine. But nothing worked. We couldn’t lock them in and let them figure it out, because it became WWE and was always moments away from an ER bill. Even when we laid with them, both Steph and I would get punched, kicked, scratched, jumped on - you name it. I can remember going to work, and worrying someone was going to be concerned about the bruises and scratches make-up just couldn’t cover up. When they asked me at my physical if I felt safe in my home, I explained I was more than safe with my wife, it was my 3 year old twins that gave me pause.

This went on even after Alex was born, except the night time routine got harder. I’d have to feed Alex while Steph tackled the twins solo, and then as soon as she was fed, I’d switch so she could have some time with her before putting her to bed, and I could take the “tough shift” with the twins. There were nights I didn’t make it back to my wife in our bed until after 11pm. We weren’t getting any time together, and truthfully, we were pretty miserable. Even after I’d get them to bed, Jack would inevitably have a bad dream or wake up and sleep walk needing me to put him back to bed after only a few hours sleep. Fortunately it was usually right before or right after I’d feel Alex, but still…. it was starting to become unbearable. We even thought about splitting the twins up, giving one of them Alex’s room, and then dealing with it when she was old enough to realize she didn’t need to be sleeping in our bedroom any more. We figured we could strip the rooms of everything that they could hurt themselves with (joked about padding the walls), and then try the “cry it out” on big kids method everyone kept telling us was our issue. This didn’t solve the issue.

But then something magical happened. The boys turned THREE years-old. You know what they could take when they turned 3? MELATONIN. Our PC told us to give them each one pill, play in the playroom for about 20-30 minutes to get any extra energy out, and then head upstairs for bath-time routine. By the time we got them into the bath, they looked like zombies, so we hustled to get through shampoo, soap and toothbrushes, and by the time pajamas were on, covers were pulled up to chins, eyes were shut and our jaws were on the floor. LEGIT on the floor. In a matter for 45 minutes, our twins were passed out.

Now let me insert a few key things to think about with Melatonin. It’s all natural. SO many people need it. It’s non-habit forming, and ya’ll - when I go to buy it at the pharmacy, they are ALWAYS out of stock. So for all ya’ll trying to pretend you aren’t giving it to your kids- stop playing. You aren’t helping any one. Let’s be REAL about the situation. ESPECIALLY for children on the spectrum. Melatonin is one of the more commonly used sleep tools out there, and one that for us, was a life-saver.

That first night, after we put Alex to bed shortly after, I was able to sit at the dining room table with my wife for an hour, eat dinner, and have a conversation. We hadn’t talked like that in months. This started to become our new routine with this incredible new freedom, and I swear, saved our marriage from possible demise because there was no way anyone could have survived the way we were operating.

Jack’s sleepwalking continued, and around when Jack turned 3.5, he started having night terrors. We think it has something to do with his greater awareness and understanding, because he began to become more anxious. He’d wake up screaming around 9:30pm, and it could last anywhere from 1-5 minutes. This never really woke Luca, because he was “used to it” we thought, but we learned after he got his tubes in, that in fact, he just couldn’t hear him. Once those tubes were in, it became problematic. As you’ve seen if you follow me on Instagram at @twinningwithautism, is that when Luca is up, he is up. It can take him 3-4 hours to be able to get back to rest.

I started to research night terrors, and learned of something called “The Lully”. Unfortunately, they’re on their way out of business, or I’d share it here, because it completely cured Jack of his night terrors, but the science behind it is interrupting the circadian rhythm as they fall deeper and deeper into sleep. The melatonin worked so well on Jack, that it almost sent him into that deep sleep too quickly. Approximately 20-25 minutes after Jack would fall asleep, The Lully, which was a mechanical device plugged into the wall that sat under his mattress would vibrate until it felt a movement reaction. It wanted to wake him ever so slightly so that he moved on his own, interrupting the fall into deep sleep. Within two weeks we saw 70% less night terrors, and by a month in, they had basically disappeared. I will say, that on the days we forget to do it, or don’t get the timing right, he will have a night terror, at which point I just prepare for a tough night- but we’re keeping up with it for the time being.

Our sleepless nights with autism have been more frequently during age 4, because the twins are growing so quickly. Each time they go through a growth spurt, we see more sleepwalking from Jack, and more frequent episodes of night time hangouts from Luca. When Luca gets up in the middle of the night, he will wrestle himself in bed until he’s figured out he just can’t go back to sleep. We’ve tried to give him more melatonin, we’ve tried to not give him an iPad - but he wakes the whole house up, we’ve even tried putting him in the car and driving him around until he would fall asleep. CRUCIAL problem with that last one, is usually it’s me driving him around, and not necessarily safe to do on my lack of sleep. So I’ve learned what works best for he and I is to go to the guest room downstairs, get him a snack to fill his belly, give him his iPad on low light and low volume, and even put a movie on in tandem, riding it out until his body can rest again. Sound miserable? It is, haha, but it’s all we can do right now. It’s not his fault. His brain is going a mile a minute when it happens. Typically it’s when he’s getting sick, going through a growth spurt, learned something incredibly interesting/inspiring the day before and just needs to learn more about it on his iPad, or when something traumatic has happened the day before and it’s upset him to where he can’t sleep - OR, his brother woke him up with sleep walking and now he can’t sleep again. The joys of sharing a room.

Lessons for those going through this, or something similar?

1. All kids are different, and so are their sleep cycles. If you have a kid who sleeps through the night- kudos! Don’t rub it in, and don’t judge another parent who isn’t getting sleep. If they ask for your advice, cool, but otherwise, keep it to yourself, smile, and find the best empathy you can muster.

2. If your child is having night terrors, and research it further if you aren’t sure, consider the method the Lully provides. Message me and I can connect you with more research, but it made a world of difference for Jack!

3. If your child is of age, and on the spectrum (or not and just having a hard time with falling to sleep) talk to your pediatrician about melatonin. It was a GAME CHANGER for us. And for those of you using it and pretending your not- you aren’t helping anyone. In this case - open your mouth, share the truth, smile, and muster the greatest amount of empathy you can.

The good things that come with this lack of sleep?

1. Last year, I wrote a book, about surviving the first year after diagnosis. It took an entire year, but every morning when I was up for a few hours at a time, I wrote a chapter (or two) and accomplished a personal dream. (Not published yet, was told I needed to establish an audience - so thank you for being here and helping me inch closer to this dream becoming a reality.)

2. I’ve seen more sunrises in the last year than I had in my lifetime combined, and each time I see one, it reminds me of when my wife proposed at sunrise, one cold September morning, on Race Point Beach in Provincetown, MA. It was a magical moment, one that I don’t remember the details of, but that the same muscle memory of watching that sunrise brings me back to, warming my heart to the 100th degree.

3. I’ve shown up, for my family, time and time again, for what they need, when they need it. It sounds silly, but it’s something that matters to me. I’ve made sure my wife doesn’t feel what sleep deprivation feels like unless necessary. I’ve made sure to not shame my kids when something out of their control is keeping them from the rest they need.

4. Lastly, I’ve learned that if I can do this, if I can function in all capacities of my life, undergoing what is used as a significant form of torture in some countries, then I can do anything I set my mind to. That every action I take is a choice - and mine alone. Despite how FLIPPING TIRED I AM, that feels pretty amazing.

My view this morning, March 1, 2020 - no filter…

Not quite sure who will read this, as it’ll get posted at 6:30am on a Sunday morning- not a great time to attract readership, and for most who don’t know what it’s like to have a child up in the middle of the night, I would assume this sounds like whining. I promise you, that is not my intent. My goal in all of this is to spread awareness around autism through the eyes of our journey, and THIS… THIS is DEFINITELY part of our journey.

Let’s just hope that they either grow out of it - I’ve heard at age 5 it settles down but who knows if that will be our case - or I get really amazing at operating without sleep. :) PRAYING for the first one.

Enjoy your Sunday ya’ll! And hey… leave a little love if you could. I could use it today. If you don’t want to share this post on social media, I completely get it. But if you’re enjoying the blog, and think someone you know might enjoy it too, I’d truly appreciate a share of the main site: www.twinningwithautism.com. Thanks in advance! And sweet dreams… xo