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

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

The Cool Mom.

Last weekend, my wife confirmed for our children, that she is, in fact, the cool mom.

How did she do that? You ask?

She brought home nerf guns.

Let’s back up.

About two years ago, we were Christmas shopping, and she wanted to get the boys nerf guns. My disgust clear across my face, I factually pointed out that all the packages state for 8 years old or older, and that ours weren’t even 1/2 that age, so it would not be in our best interest to gift them to twins whose excitement matched with aggression on a holiday morning would simply mean any fragile decorations I’d put at a height they could not reach, would most definitely find peril.

That shopping trip, I won.

Last weekend, when Jack let Steph cut his hair and trim his nails, earning him a trim to the oh-so-wonderful-Walmart, he pridefully came up the basement stairs yelling “Mommy! Look what Mama let me get!”

She followed behind him grinning, ear to ear, excited to introduce our kids to the amazing battlefield of rush that styrofoam pellets aimed at you at a speed to fast for 5-year-olds should be.

Jack rushed to his siblings, making sure they each got their gun and stash of ammunition, and all three kids followed Mama eagerly to learn what to do.

She walked them through it, and I simply sipped my coffee in the kitchen quietly, watching their eyes follow her ever movement, hanging on her every word in amazement.

The only one to get injured that day was me.

The only one to pick up the hundreds of darts shot, was me.

I am the Mom who cleans up the mess.

I am the Mom who is the target.

I am not the cool Mom, when she puts the darts up high above the kitchen cabinets because she’s tired of cleaning them up.

I am also the mom that at 5am the next morning, when Jack was desperate to play with them again, said, “Mama will be so excited to play with you when she wakes up, so let’s wait for her.”

I could have tried to be cool at 5am. I had been up for an hour, and had a cup of cappuccino- cool was technically possible.

But that’s the thing.

There can’t be two cool moms.

So all week, when they wanted to introduce their friends to this amazing new world Mama gave them, I left it for her. I let her look like the coolest Mama there was.

Because she is pretty cool.

At one point I asked her, after I’d cleaned up the darts for what felt like the 100th time, why on earth she thought this was so cool. (Again, I’m not the cool mom.)

Before I could lecture her on how scary it is to teach our children about guns she stopped me.

“If we had a gun in the house, I’d never get these for them.” she said.

She then pulled the ultimate excuse, that’s impossible to fight. “I never got to have this stuff as a kid. I just want to have fun with them.”

Ugh.

This is why she is the cool mom.

We will continue to have conversations with our children about guns, and ensure they know to never touch a real one… but for now… the cool mom is enjoying teaching them about aiming at a target, and how to breath and relax their bodies to really focus in on what’s in front of them. She is filling our house with laughter and play, and giving the kids memories that are happy and filled with joy.

I’m not really sure I’ll ever be the cool Mom.

I’m the worrier.

The keeper of all information.

The one who knows every teacher, aid, nurse, school administrator, doctor, and adult who works with our children on a regular basis.

The one who knows which twin wants veggie sticks in his lunch, and which one wants cheezeits.

I’m the mom who makes sure the medicine gets taken every night and every morning.

I’m the mom who gets up early every morning for the snuggles on the couch, and holds Jack’s hand while reading him a story as he falls asleep at night.

Not a lot of room left to be cool.

But that’s ok.

Because the cool thing in our family is… they have two moms, so we don’t both have to be cool. I mean, we wouldn’t want to spoil them or anything.

To all the non-cool parents out there: I see you. Kudos on letting your partner bring the fun to the party. I’m with you on clean-up duty… because to us, happy kids and a clean house is cool enough, isn’t it? 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

Muscle Memory

CONFESSION: I’m hiding in my office. 

The lights are out so they won’t know I’m in here.

I can hear my sweet Jack telling our nanny about how great his day was while Luca chomps away at his snack of very crunchy veggie sticks.

I listen as Jack shares the details of his day, and although my heart is full that he can be so well-behaved and polite for her, my heart also hurts because I’m hiding in my office, with the lights off and the music low.

I’m hiding so he won’t see me.

I’m hiding because if he does see me, his polite manners that he’s practicing for Ms. S. will turn into whines for me and screams of meanness towards her.

No exaggeration.

Our Jack is the sweetest love bug you’ve ever met. 

He’ll grab your cheeks and say “Cute, cute, cute…” in a way that makes you melt and feel so loved. 

He’ll blink his long dark eyelashes over those adorable almond shape eyes, making you forget what he asked for and simply say “of course, my love, I’ll buy you some ridiculously overpriced you-tube endorsed toy that I can only find on e-bay.” 

Jack doesn’t fit your typically known mold of autism like Luca does. 

He does not line his toys up around the house. 

He has found the words that were missing at 18 months, and will have a full conversation with you, spouting them out with the cutest lisp from the two teeth that went missing six months ago. 

Jack will give you love, all day, every day, if you let him. If you are in his bubble, he will shower you with affection in the most contradicting way to what is known about certain ends of the autism spectrum.

Where Jack’s autism shows up is in moments like this morning, where just the change of Mama coming to help put him on the bus took all the confidence of the 5-year-old pro who has sprinted proudly onto those steps of the yellow chariot the last three days, into scared and frozen feet that had to be carried up the stairs as he was paralyzed in tear-streaming anxiety.

Jack struggles with transitions in a way that if something does not go as planned, a full-blown meltdown can ensue, where our boy simply cannot get a hold of himself. 

Our sweet boy will be brought to the floor in a roller coaster of emotions that to some would seem like a ridiculous tantrum - dramatic in nature and unnecessary. 

What we’ve learned is that when moments like this happen, he does not have the wiring to simply T-swizzle the moment and “shake it off”. He needs time, and the understanding to let the rollercoaster happen until it’s come to the roaring stop, and he can get off and return to the moment it left him in.

Jack’s magic is that he can feel things in such an intense way, but as he’s so young, he’s yet to master that magic. Where he’s so differently wired, the disconnect between understanding how to “just get over it” versus “it’s the end of the world as we know it”, is present. 

Each time it happens, I work with him to breathe through it, and to find a way to ground himself in the facts - something our last incredible nanny, Ms. K., taught us. We calmly explain, when he’s ready to listen, what’s real about a situation, so that he can learn to understand a situation better through what he knows about it, versus just what he feels about it.

The last three days when he got off the bus, and I stood there with Ms. S., he yelled and said how he hated her, and cried as he clung to my leg asking for her to go home. Yet, after we settled him, got food in his belly, and were able to remind him that he actually enjoyed his time with her, he opened up to her each time, asking to play. 

So today, I hid in my office when they got off the bus. I was ready to sprint down our long driveway incase he refused to get off the bus for her, but as I listened to him telling her about his day when he got off, like this was the normal and acceptable behavior of the afternoon, the bus driving off in the distance, I ran in my office and hid. 

Hiding allows him to build the muscle memory to know that he is safe with Ms. S., that it’s ok to feel safe with someone other than me, and provides a meltdown free afternoon until I re-appear.

If this situation feels familiar to you, perhaps your child merely suffers from separation anxiety, not finding themselves on the spectrum where this behavior is so amplified, I see you. I am you. You are not alone.

One of Jack’s teachers told me when I expressed concerns about his meltdowns that kids who are on their best behavior with others, but turn into emotional messes the moment they are with their person (whoever that person is) simply means that they feel safe enough to be their worst version of themselves while they are working to learn how to be their best. 

Remember: It takes time to build muscle memory. You are not a bad parent because your child can be a monster, overly dramatic, or completely ridiculous only around you. You’re doing an amazing job giving them the safe space to be their worst version, so they can learn how to be their best. Keep doing what you’re doing. Of course, with the permission to hide when necessary.

XO

The Artist

If you’ve been following our journey on Instagram (@cyoungphoto) and Facebook, you may have noticed that we have recently moved on from Disney’s movie: Penguins in the Young household, and found our way to the safari of the Lion King.

In this shift from icy landscapes to dessert terrains, it’s turned into a bit more than just “for the love of the lines” in how Luca designs his animal scares.

Where lines of penguins used to find their way around the tables in the first floor of our home, the entire animal kingdom now comes out to play these days, and not just simply in lines, or glimpses of a movie scene… it’s pure art, in it’s most beautiful form.

If you get the privilege to watch our artist work, you will see how the music moves him… it sits in his soul until it bubbles to through his body, escaping his lips in song. At first, he worked to learn the opening of the movie, and the first lines of “Circle of Life”, words that I still have no idea how to pronounce. His fierce determined commitment to getting it right is endearing in itself, but when he matches the tone and diction perfectly, it melts your heart.

As he begins to rifle through his box of animal figurines, studying each one with such care and adoration, he begins to place them intentionally around our large living room. I’ll be in the kitchen emptying the dishwasher, or playing a game with Jack in the playroom, when we’ll hear:

“Oh, I just can’t wait... to be king...”

When he gets to this part of the song, the words are clearer, his voice is stronger, and his cheeks are carrying a prideful smile. Although so many of the lyrics have yet to be mastered, that one line he knows he has right.

With his little fingers, he takes the entire 90 minutes of the movie to create the scene in his reality, refusing to be interrupted, and intensely focused on fulfilling the picture in his head. It’s like he’s been given a blank canvas, new paints, and a large room without interruption, allowed to simply create as he sees fit. It’s breathtaking to watch.

This is our little artist, Luca. And we can’t wait to see what he continues to create as inspiration finds his soul.

In case your soul needs a little inspiration tonight, as these lyrics speak to our souls as we parent autism…

“From the day we arrive on the planet
And, blinking, step into the sun
There's more to be seen
Than can ever be seen
More to do than can ever be done

Some say, "Eat or be eaten."
Some say, "Live and let live."
But all are agreed
As they join the stampede
You should never take more than you give

In the circle of life
It's the wheel of fortune
It's the leap of faith
It's the band of hope
'Til we find our place
On the path unwinding
In the circle, the circle of life

Some of us fall by the wayside
And some of us soar to the stars
And some of us sail through our troubles
And some have to live with the scars” - The Circle of Life, Elton John

Parenting autism continues to feel like this great leap of faith… that we were given the chance to be what our children need… the humility to understand there is so much to learn… the kindness and patience to understand it is not supposed to be easy… the belief that they will continue to show us what inspires and fulfills their souls… and the refusal to let them feel anything less than they deserve…

We are on this path unwinding… but loving the fortune it brings…

Here’s hoping there’s inspiration that’s finding its way to you, like it is for our Luca… reminding you to create without worry of judgement… to sing loudly when you feel proudly… and to take the time during these strange months of COVID, to “never take more than you give…”

After all, it’s the circle of life.

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

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

Parentship

A few weeks back, on maybe day two of no school, life is over/*cough*/on pause, my wife had come home from work later than usual, after the first of many long days of adjustment for our new normal at home.

She was fried. As a small business owner, she hadn’t slept much, as her brain was feverishly trying to strategically rearrange the life of her business to make sure her team was protected, could continue to provide for their families from their Pro Image livelihood, and that what she built over the last two decades could survive this. She didn’t have capacity for much else by the time she made it home that night. But I didn’t have capacity for much patience or grace, because every ounce of it I had left had been spent trying to reassure our children things were fine, and the lives they just lost wouldn’t be gone forever. 

Inevitably, our lack of capacity that night lead to a heated conversation, and going to bed angry. Something we work really hard to not do. But the next day, when some of the feelings had settled, we took a few minutes to sit in the uncomfortable, and be honest about how we were feeling. She shared how scared she was for her team, her company, and how to provide for us, and I shared how for the first time in a long time, I felt invisible. That because all her capacity was being spent on her team and her clients, she had none left to see us, her family. That I was looking at really long and hard days ahead with three young children, two of which needed skills and structure that I didn’t know if I was capable of, that they were used to getting for 6 hours a day, that I was pretty sure I was going to fail miserably at. If the one person I chose to be my partner couldn’t find space to see me, I was worried I wouldn’t matter. She shared that she had a team of 10+ who could become invisible if she didn’t have space to think about them, and that if the team failed, she couldn’t provide for our family either.

We sat in that uncomfortable for a good 45 minutes. There were tears from both of us, but once we were completely honest, we were able to talk through a plan that got us both to what we needed. One that could be flexible and could pivot as needed. We understood that with only so much capacity at this time, and with both the business and our family having needs that had us at capacity level, we would need to own our roles but make sure to leave room for whatever else might come up by relying on open communication with each other on what we could handle, and when we needed help. 

That plan has been working pretty well for the last four or five weeks. But this week, after two really long sleepless nights with autism, I failed at holding up my end of the deal yesterday. The boys schedules are totally off, so emotions are high, bodies can’t stay calm, hands are not staying to themselves, and they are super quick and short to react. My reactions weren’t as patient or kind as they needed to be yesterday either. My wife had to call me out twice on the way I responded to Jack.

When she had had enough, she finally looked at me and said “what do you need?” I responded defensively, because I knew my actions weren’t attractive- but I was TIRED. She stayed patient, and asked me again- “what do you need?” After a minute, I cried. I was so tired. At 4am that morning, while Luca and Jack were up, I had been working on quotes we didn’t finish the night before for her work, so that we could keep up with making sure the team’s schedule was full. I had been patient and played with the boys at 5am, even though I just wanted to nap on the couch. And when Luca threw all of his toys at me, including a heavy-duty microwave, I was so tired I didn’t pay attention to my surroundings when I chased after him before he could throw something at Jack- I ran into the baby gate, scoring a solid bruise that still hurts. I cried because even though I napped for an hour while Alli took her morning nap, it wasn’t enough. I cried because I knew I wasn’t holding up my end of the bargain. I wasn’t proud of my behavior either, and was ashamed my wife had to call me out.

She looked at me and said, “this isn’t you, or the parent you want to be, so you need to tell me what you need, or snap out of it.” 

I could have fought back. I could have been nasty, but weeks before I promised to be honest, so I simply said “I am tired”.

She goes, “Ok, to to bed. I will put Jack to sleep by myself” as it was after 8pm and both Luca and Alex were already asleep.

I don’t ever not put the kids to bed. Jack usually needs to hold my hand to fall asleep, and ridiculously, it’s my 2 minutes with him at the end of the day that feels worth all his emotional roller coasters that come before it.

But I had just told my wife what I needed, and I needed to listen to myself, and let her show up while she was willing to.

So I went to bed.

And the kids slept through. Jack got up at 4:30 am, but he was willing to play in his fort (our master closet - don’t judge- it gives me an extra 45 minutes later to snooze which I NEVER get so I am letting it work as long as it can). 

I slept from 8:30pm, woke up at 1:30am to find everyone was sleeping so I went back to it, until 4:30am and didn’t get out of bed until 5:15am. 

I am two cappuccinos in as I sit in the playroom and type this up on my phone watching Alex and Jack play with legos at 6:30am. My wife is still asleep, and Luca is hanging under his sensory sheet, content enough he isn’t quite ready to get up yet.

I share this in case anyone else is struggling as a parent navigating the new normal, not just with their kids, but with their relationship as well.

Our parentship, aka parent-relationship, is one we put a lot of effort into. But while pregnant with the twins, we agreed to make sure she and I, outside of being just parents, always came first. If we couldn’t take care of each other, how could we possibly take care of our kids effectively. 

Sitting in the uncomfortable was a theme my therapist encouraged, that scared the crap out me. She said that if I always thought the worst was going to happen, I needed to find a way to let the facts debunk my fears. By sitting in the uncomfortable, and doing the work to be honest about how I was feeling in a situation and let others do so as well, I would learn that the worst that could happen, wasn’t really the natural outcome, slowly helping to build muscle memory in facing uncomfortable situations for what they are - momentarily decisions that need to be made, not monumental in size or life altering. 

As you face another week of this pandemic, ready to parent, teach, show up as a spouse, and get some work done to pay the bills on top of it, I just want to say- you can do this. You CAN do this. It looks to be that the country will slowly open up again, and although the newest form of normal may still not be the totally preferred one, hopefully it will continue to provide options that make things better able to meet everyone’s needs. 

If you find any of this helpful, what has worked for me is remembering to be present in our parentship, keeping open lines of communication, asking each other for what we need, and letting my partner show up when I ask her to. Nothing about the last couple of months has been normal and we have all had to adjust in some way. If you can sit in the uncomfortable long enough to find what’s comfortable, maybe the solution can be something you never knew you needed, but gets you to be better than you knew possible before.

XO

Oh and PS: if anyone has any tactics on getting a certain 4 year-old to have a calm body and a quiet voice- I am all ears! My sanity is at stake. Thanks in advance.

How Parents Are Made

How Parents Are Made

“Children with special needs aren’t sent to special parents, they make parents special.”

When that powerful quote found its way onto my social media feed, I caught my breath. In the similar way to how Shonda Rhimes resonates every Thursday night in her opening and closing lines of each Grey’s Anatomy episode, it challenged me.

Since the twins’ diagnosis, I’ve settled on the mentality that we were given this family, because Steph and I could be to them what someone else couldn’t. I’ve cringed at my poor parenting, and picked up pieces of my broken heart during the really hard moments of COVID-19, and all the chaos it’s ensued on their diagnosis that catch me when I’m too tired or too frustrated to be the best version of myself. The last few days, in particular, in dealing with the loss of my Nana, has left me emotionally spent, with very little energy available for anything else.

I have questioned a million times over the saying “you are only given what you can handle”, and used it to comfort the exhaustion away, with some naive hope that we were special and chosen for our kids because we had the patience, kindness and life experience that would make us exactly what they needed; exactly what our magical children deserved as they navigated life with the autism diagnosis.

And then the coin flipped.

What if we weren’t here for them, but they were sent for us? What if they were gifted to us to make us better people, make us more patient, more kind, and provide the life experience in raising them that we will ultimately need for something bigger in this life? 

This last week has been tough in our journey with autism, particularly in managing the constant behavioral outbursts. Not only are they boys, but add the twin factor, and the little sense of remorse Luca feels (currently), with every weight of remorse that Jack feels (hopefully only currently as well) and it’s been a non-stop fist fight for days. I will say, Luca has a serious potential career in baseball- as he can nail his brother in the face, every time, with his water bottle, from as far as 10 feet away. But last night, he decided to give his sister a try, while she was just sitting there watching TV, and the bruise is still fresh on her cheek.

When we try to talk to him about it, he scripts an “I’m sorry” and goes back to his business, without any explanation of why the behavior happened, or indication on how to redirect it (or even intercept it) in the future. I keep going back to remembering that all behavior is communication, but I can’t figure out the lesson in this. And just when I was finding comfort in the expansion of his vocabulary through the great work happening at his school, life got paused for the world, and I now worry that my lack of teaching experience will cause a regression in our sweet boy’s progress. I worry that my own inability to muster the energy he needs, that he used to get from a one-on-one presence in his aid, for an entire school day, where he was tended to, challenged, inspired, loved and entertained by, will make him angrier as each day goes by.

As I watch our daughter during quarantine, who takes her naps without fuss, plays joyfully with Jack in between them, eats anything (and everything) out of the pantry and fridge, and is more than content to cuddle up to a movie on the couch, I let that concept of children gifted to their parents sink in. If we ever needed to believe that we were decent parents and had any chance of being what our twins need for the next however many decades we are blessed with them, Alex gives us that reassurance hourly.

Because, if I’m being honest, on the really hard days especially lately during quarantine in COVID-19, a parent to a special needs child could be asking themselves, “what did I do to deserve this?” I know I have. Especially at 1am, when Luca is having another sleepless night with autism, and in his frustration he’s kicked me so hard in the face I know I’ll have a decent shiner the next morning. Despite whatever pity party my small violins start to play, they are always followed by the sad question of: “what did this beautiful, sweet boy do to deserve feeling like his only resort to communication is to fist fight or hurt someone until they understood what he was feeling?” 

I hope, dear reader, that as you read that statement you felt the humanity behind it. Because although those moments are few and far between, they are real, and they are something that I know I’m not alone in feeling. If I am to share our journey with you, I need you to see all of it. And maybe, by my sharing, it can help someone else to understand from my perspective they didn’t already have. 

For every moment our life gets so hard that I don’t know what I’m doing, that I question if I can keep going, or that I start to question why I was chosen for this, I have 1,000 more moments of joy, and completely rewarding love, and a reminder that I am worthy. Parenting, and every moment of it, is a gift. Parenting during COVID-19, however, is an even greater gift. Because during these unprecedented times we have to parent at a whole other level. Even though I know it’s a gift, and completely worth it, I’d be lying through my teeth if I didn’t admit to wanting to quit on the daily lately.

Many parents are being asked to work full-time jobs from their homes while ensuring their children don’t fall behind in school. Parents like ourselves, who have littles with special needs, are being asked to find greater patience, greater understanding, and quite frankly, a greater sense of fun to keep each day and every day healthy, safe, and open to learning for their littles.

I didn’t sign up for this. Despite being on every possible wait list for ABA services in the home, I hadn’t found time to apply for social security for the boys, which I was told would be the only way I’d ever get to the front of the list to get help, because I knew the incredible team that was working for them at school was killing it, so social security fell low on the priority list. I had no way to know that we’d be quarantined with returning to school a dream far off in the long distance future. We’re not even sure if they’ll get to go to summer school, or what will happen this fall if we get another wave of this. Even as I type this, the weight of my anxiety sits in my chest and it’s suffocating, knowing that in my email inbox is a letter from the school asking that I wave the state requirement for our kids to get the services they need- because during a state of emergency they cannot provide them at this time.

Staying solution-oriented, the only perspective I need to have is to just keep going. My family is healthy. We have an incredible nanny who is helping every day, which is leading to proactively stopping Luca’s aggression at least 50% more than I can on my own, resulting in 50% less chances of injuries that put our family needing to go to the ER. The kids are loved and cared for and safe. 

If I adjust my understanding from that we’re not given more than we can handle, to the idea that every test of the last few weeks, and last four years since we became parents, are lessons and opportunities to learn how to be a better parent, inevitably being able to handle more adversity, change and growth, then maybe COVID-19 won’t seem like a nightmare of a running a marathon I didn’t train for. Maybe adapting the student perspective, believing that every behavior is communication, turning on those listening ears I keep begging Jack to make sure are working on his head - maybe then this will start to feel more like the training piece… the starting from scratch, learning how to use my muscles to work for me, listening to what they need as they train for the many miles ahead… sharing stories with strangers to help pass the time, making life-long friends from the similar terrain we run together… maybe then, this will just be an introduction to the beautiful adventure ahead - the one where the finish line isn’t why you started running in the first place.

Every child is magical in their own way, unique and different and bound to be incredible humans one day. But those on the autism spectrum, as they dance outside the circle a neurotypical child typically operates within, showcases focused areas of attention where their magic can truly shine. Where there may be areas of learning that do not come naturally to them, it leaves room for the areas they truly care about, and due to that extra space of interest and excitement, can teach you things you may never have known before.

For my fellow marathon runners on this new terrain of parenting, remember to keep eyes ahead, breath through the tough moments where your body tells you want to quit, and rely on that muscle memory built from love, sweat and tears… If you need someone to run a few miles with, I’m here… with stories to distract you, and working listening ears at your disposal, for as long as the pavement lies ahead. You’ve got this. Xo

Raising the Wild...

To the ones raising strong-willed children, who have big feelings but haven’t fully learned how to work through them yet, during this “unprecedented time” of social distancing and quarantine… this one’s for you…

We made it through our second week of home schooling for our twins this week, and I’m wiped. Going into the self-quarantine, and taking on working from home while trying to home-school three kids under the age of five (with help), I naively thought my greatest challenges would lie in working with Luca, and meeting his needs in the dependable way his teachers do at school. He has a team working for him five days a week, observing, evaluating, and attending to him during school hours in ways that I had no idea how I’d be able to while at home. I worried about his aggressive outbursts, and how I’d manage them in the hours I would be outnumbered 3:1, especially if they got more frequent with the lack of scheduled activities and individual attention his aid gives him.

But ya’ll… NOT EVEN CLOSE.

I’m exhausted.

I’m fried.

I’m wiped.

Not because working with Luca to meet his needs hasn’t taken energy- it has - but he’s been awesome, and receptive, and worked on using his language in ways I wasn’t able to experience before. It’s actually been incredibly rewarding.

I’m tired, not because our toddler, Alex, who is missing daycare and friends in her expected neurotypical fashion, and is needing extra attention because others are not seeking hers in the classroom.

I’m worried about how long the status quo is going to last in our new normal because lately, I feel like I’m…

Raising the WILD.

No, seriously.

Our sweet, caring, and completely impressive boy, Jack, is so strong-willed that I think he might break me. He questions everything all day long. He’s the first to rise in the house, pulling me out of bed before the sun’s come up- and quite frankly- far before anyone else in our household is willing to join him.

I’ve shared how he feels big feelings, but, lord give me strength, his feelings since not having school and connection to friends every day are MASSIVE. They span the open dessert for miles and miles and the suck up every breath of air I have during the day.

Our nanny and I will set up the lessons for the day, and just as we’re patting each other on the back because it’s going well, it’s like his time of the month hits and just because Luca is enjoying it, it means he can’t, and we’re completely derailed.

Every time he decides to share these feelings with our social distanced world, they hit a volume that I swear pulls our neighbors into our bubble, despite that we are acres away from them physically.

And lately, the following tools are what we are focused on having him master:

• Gentle Hands

• Teasing isn’t Kind

• Soft Voice and Open Listening Ears

• Space is Kind

That is the nicest way I feel like I can frame for you the constant tackling of siblings with strength that can hurt and injure, the need to push every button Luca has, the volume of his whine, and the refusal to read the room when someone doesn’t want him on top of him, in case he were ever to read this one day.

Ya’ll…. even when his sister is napping and it’s the nanny and I with the twins, and one on one time is available, it’s still our biggest challenge.

At one point this week, when we learned that schools were indefinitely closed until at least May 4- but let’s be realistic, most likely the rest of the semester - Jack and I were already having a tough day. His anxiety was high, and even though he had had BEAUTIFUL moments throughout the day, when he was able to name his feelings and work through them, or ask for help when needed - I was FRIED, and more so with not having a date at which I needed to make it to, when we could all go back to the normal we so desperately miss.

After I finally got him to bed, during not the easiest bedtime routine, I snapped at my wife, and even went upstairs to take some space of my own. After putting away the laundry that had been haunting me all week, sending the emails to the kids teachers with photos of proof of what’s gotten completed throughout the day, and completing a few business-related tasks for my wife, I finally made it to the shower. I could feel myself relax, had a decent therapeutic cry, and when I finally made it to my pajamas, I could hear my father’s words from the speech at my wedding ring through my ears: “she had a flair for the dramatic”.

I winced.

I laughed.

I smiled, remembering the adoration he had in his voice when he said it.

And then I looked up to the heavens and said “Dear Lord, please don’t let this be my karma.” I’m going to naively continue to live in denial thinking he was merely referencing the many performances on stage he watched during my short-lived theatre career and that 4-year-degree as a Theatre major he helped to pay for. (Humor me!)

Here I was, week two of quarantine, feeling pretty lousy in a pity party of exhaustion, and I was acting like my four-year-old child to my adult spouse. I hadn’t gotten a chance to shower that day, so I wasn’t feeling like my best self to start. I was hungry, because I had maybe been able to snack throughout the day, but despite getting dinner on the table for her, never actually got to eat myself. And the glass of wine that I had on an empty stomach was definitely not the wisest choice.

I was having BIG FEELINGS, and not able to deal with them.

I wasn’t using my words.

I wasn’t asking for help.

I wasn’t owning how the quarantine was making me feel. I missed my family. I missed my friends. I missed my spouse. I missed my freedom when all three kids were at school. My anxiety was through the roof, and hadn’t had a break to speak to the one person who for 45 minutes only cared about how I was doing, and let me talk about anything I needed to say. And I was ASHAMED I was having those feelings.

Just earlier that day I was talking with a friend I admired and cared for, who was working through her anxiety about leaving her family every shift, to work in the NIC-U as one of the most heroic nurses I could think of. Her anxiety was real. Mine was selfish and unplaced, and I was disappointed in myself that I wasn’t able to handle things better for Jack that day, or with my spouse.

What’s going on in the world is “unprecedented” - this term that is making so many of us roll our eyes because it does nothing to reassure us that the worst isn’t the yet to come. The unknown makes things feel hopeless and doomed for worst case scenarios in ways that can make us feel unhinged.

Imagine what it feels like for our wild ones, who haven’t been able to fully comprehend the social stories we’re trying to give them to understand why one day they were living their best lives, and the next day they were told they couldn’t see their friends, learn with their teachers, and play in public places or intimate play dates.

If we as adults, with decades more life experience than our kids, are having a hard time, then maybe we can find some grace and perspective for our littles who only know one way to feel.

If you are raising the wild-hearted, passionate, and dramatic at times souls that I feel like we are in Jack, I need you to hear me when I say, YOU ARE NOT ALONE. This is hard, ya’ll. None of it is easy. But having the unruly who can’t comprehend the simple requests that could make life “simpler” during a difficult time, like “keep your hands off your sister”, or “please keep your voice down”, or “stop teasing or he’s going to beat the crap out of you every time! (no one else? that’s just me? oh, well, ok then… ;p )… and maybe are asking “why” 1,000 times a day because they actually want to learn why something is happening during a time they just can’t understand… YOU ARE NOT ALONE.

The one driving force to my staying sane as I manage all the BIG FEELINGS going on in our household during quarantine, social distancing, and homeschooling, is that something I assume about most of the kindred spirits in my life, who I rely on to keep me steady during turmoil and chaos, inspire me to be a better person because they expect more of me, and are passionate game changers leaving an impactful footprint on this world.

As the week continued, when Jack was overly loud, or extremely needy, or beyond frustrated- I focused on what I’ve found to work from him in the past: we talked through feelings, used token boards where he could earn a preferred activity once he tackled a wanted behavior five times, and used books and songs to understand why we feel certain emotions throughout the day. His favorite, is “Belly Breath” by Common and Colbie Caillat, in case you have a child that might be interested.

Instead of Jack being able to just say “I’m ANGRY”, or “I’m sad”, we worked on adding the “because…” to complete the sentence. By the end of the week, although the tantrums were still at large and the behaviors continual, he was able to express why he was feeling how he was feeling twice on Friday, and even shared with Luca that he needed to “belly breath” because he was “so mad he could not be kind” - his words, hand to God.

I have no idea how long this new normal is going to last. There are days it feels like we are living in Hunger Games or The Maze, and it’s all some kind of Big Brother experiment. All we can do is continue to hope for warm weather where our children can run the wild out before it takes over our sanity. As parents, my wife and I are focused on trying to give Jack the tools he needs to harness that energy and use it for good one day.

With no control over how many more tantrums are in store for us during this new season, or “accidental” injuries are caused to his little sister when he plays too rough, or buttons he pushes with Luca that initiate aggressive reactions… I have little advice on how to navigate the unknown while raising the wild in this different time. But what I can share, is that YOU ARE NOT ALONE, and let’s hope that all of their determination stays strongly grounded in their souls, and used to change the world for the better one day, because as a parent who is dealing with it hourly - trust me when I tell you, it’s not something you want to reckon with.

I look forward to witnessing their passionate advocacy, creatively found solutions, and unwillingness to give up on what they care about, for they are who will be our mark on the world, as we were the ones responsible for raising the wild.

Xo.

Five Powerful Things

Here are 5 Powerful Things I’ve Learned From My Kids During the First Week of Quarantine

It feels surreal that we’re about to start week two of Quarantine for COVID-19 in NH. (Yes, technically I guess we started this morning, but for most parents I feel like Monday morning is when it feels like it REALLY starts.)

As I think about the first week of quarantine, bracing myself for week two of only heaven knows how long of a quarantine session, I’m trying to focus on the incredible learning experience this is as a family. Here are five powerful things that I learned from my kids during the first week of quarantine.

1 .) The Power of Positivity: Despite the unknown disruption to our three children’s schedules, the smiles are still present. For the twins, routine is key to happiness, and they’ve had to find moments of unexpected happiness in dealing without a solid routine.

2.) The Power of Great Leaders: Each morning, when Jack expected to be able to school, particularly near the beginning of the week, his first response each time I explained he wouldn’t be able to go, was the same: “But Miss Kelly will miss me”, followed by “and Miss Shannon and Miss Sabrina” - in the order he sees his teachers each day. The first thing he misses when he realizes he can’t go to school are the incredible educators who would have taught him something new that day. He misses their lessons, their kindness, their encouragement, and their friendship.

3.) The Power of the Bubble: I will admit, my wife and I have probably tuned into the news far more in the last few weeks then we have in the last few years. Not due to lack of interest, but more due to the children dictating what goes on the television. However, this week, each episode of the World News with David Muir has been saved to our DVR, and as often as we can we’ve been tuned into the Corona Virus task force updates. Like so many, it’s weighed heavily on our hearts as we comprehend what’s going on in the world today. But, as heavy as it is, the moment the news is off, our children pull us back into our bubble, demanding a juice box or a story to be read; asking to play hide and seek, or play with “sea animals” (Luca). Our amazing little bubble, the one that if we can just protect, keep safe, and keep surviving for, keeps us grounded enough to keep moving forward.

4.) The Power of Simplicity: The incredible parents who have tackled homeschooling their children with flair and pintrest worthiness, I say: KUDOS. I’m thoroughly impressed by the many videos and images being posted of all the intricate activities and lesson plans parents are pulling off, WHILE working, mind you. Ya’ll… I am not going to lie: even WITH help this week, I did not get any homeschooling done. We took the week off. Luca wasn’t feeling well for the first few days, I was trying to educate Jack that working from home for Mommy meant that Mommy actually had to work, while keeping a Toddler entertained. We were lucky to have smiling faces each day. What was amazing was that the kids didn’t really care. They liked that we kept it simple and gave them choices. And although our amazing nanny is ready and willing to get us on track for homeschooling tomorrow, I have a feeling we will maintain the “keep it simple” mentality - for both the kids, and ourselves. If I’m not careful, I’ll get overwhelmed and waste time worrying about what I can control. But if I keep it simple, focus on the tasks at hand like getting my hours in for work, getting the kids onto a new routine, and just making sure the conversation has important lines of communication stay open to address needs from everyone, I feel like we can at least survive one more week. (Let’s hope!)

5.) The Power of Friendship: Even for our introverted boy, it’s beyond clear that he misses the companionship of his friends. Although Jack and Alli have each other, and have been truly enjoying their new classmates, they each miss their own people outside of this house hold. For the twins, Facetime does not cut it. Don’t get me wrong, we’ve Facetimed almost any and everyone we could, and they are thrilled to see themselves on the camera. Each time we get off the phone, particularly with those they really miss, they say it isn’t the same. Just today, Jack said to me how he missed two friends, because they were “nice to him”. They miss the feeling of being with someone you care about does for your heart. And although we’re grateful for technology that keeps us connected to those we care about, I can’t wait to see the faces of these kids when they get to be reunited with those that warm their hearts. I feel like it’s going to be epic!

What powerful lessons did you learn this week? Feel free to share! Would love to learn from yours too!

The Weight of Anxiety

I read something today while scrolling social media, that mocked those having anxiety about COVID-19, saying they were giving weight to something weightless… 

It stuck with me in a way where I just can’t let it go. I know I normally discuss our journey with autism here, but I would find it hard pressed to find a parent of autism who doesn’t deal with some kind of anxiety. Since my goal with this blog is to share our story in case it helps someone, anyone else, I thought it might be time to own this one.

I’ve dealt with anxiety for what feels like my entire life. It’s appeared in all different shapes and sizes, and I’m not really sure how best to describe it, so bear with me as I try.

What is anxiety?

It’s a feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome.

What does it feel like?

For me, I feel my entire body get tight. I get incredibly tense, from my legs, to my arms and chest, and can even feel it in my head. Because my chest tightens, it can be hard to breath, and as my forehead feels the stress, it can easily cause a headache and be hard to think straight.

What causes it?

For me, the common causes of my anxiety lie in when I feel out of control, feel as if I’m being or could be judged, and when I’m letting someone down, in some way, or worst - myself. When it happens, I find myself to become truly dramatic, where the situation feels like the end of the world, despite that I can be a very practical and realistic person.

How do I act during it?

I get defensive about anything and everything. I immediately feel like everything is my fault, and that there is no way I can be enough. I get irrationally upset, or unreasonably sad. I turn into someone that is unrecognizable to the people who know me, as I’m simply the worst version of myself. And then, when it passes, I’m back to normal. What’s hard is that in the moment, it’s like I can’t manage it, because it completely takes over me. Afterwards, I sit in the reality and shame of it, knowing it’s not a place I want to live in. 

How do I manage it?

I’ve learned both healthy and unhealthy ways to manage and cope with my anxiety. Some of the unhealthy ways tend to represent numbing of sorts. When I was younger I’d go out and drink or party with friends, occasionally smoke cigarettes. Lately, since I grew up, got married, and had babies, half a glass of wine can make me pass out before 8pm, so now, I eat my feelings. I’m a sucker for all things cake-like, but particularly whoopie-pies and those darn frozen nutella sandwiches. (Not healthy- and not helping the constant fear I’ll be judged for the mom bod I try to hide in compression yoga pants- but I’m just trying to get by here ya’ll.)

Healthier alternatives that work for me? Six months ago, when I felt like my anxiety was at its peak, I searched for a local therapist - who I love - and have been seeing her regularly ever since because it’s giving me the tools I need to deal with, deter, and diminish the anxiety. When I was younger, right out of college, I realized how much running truly helped my anxiety. Pumping those natural endorphins through my body let me run out my stress. These days, I can’t even find time to do a 30 minute work-out. But the days I can do it, I notice a sincere difference in how I feel. 

Because I can’t always find time to work out right now the way I’d like, and a personal goal this year was to find both physical and mental wellness, I started seeing an amazing therapist 6 months ago and it’s really helping me. If you can’t find time to get out of the house, particularly during social distancing, many therapists are participating in televisits where you can connect either by virtual video experience, or even over the phone. I cannot recommend this enough.

The Weight of Anxiety 

The weight of my anxiety comes from feeling the responsibility to take care of a messy playroom, or laundry that’s exploded over my bedroom, or a refrigerator of food laughing at me because it knows the twins won’t eat anything in it. The heaviness of it lives in late nights working on operation management for my wife’s company, after long days of childcare and working full time at my other job, aware that I could be getting up just hours after finally going to bed, with a twin who can’t sleep, when all I want to do is rest before getting up to do it all over again. The weight becomes unbearable when Luca has an aggressive episode because he still doesn’t have the words to communicate what’s wrong, hurting his siblings and/or us until he gets his point across, because it leaves me worrying about the day he is bigger than us, and if we can’t get him the tools he needs to deal with his feelings, I’m not sure we’ll know how to manage it. My anxiety particularly feels unmanageable during this uncertain time for our country when all leadership can ask is for our understanding and patience as they navigate the pandemic with uncertainty. 

The current state of what’s happening in today’s world is not weightless, especially for those who suffer from anxiety like I do. Although anxiety is invisible in nature, the weight of it shows on those who don’t wear it well. You can see it in the slump of their shoulders, or the pause in their pace; the worry in their forehead wrinkles, or the grip in the way they hold their hands in place. The behavioral baseline of those running from, or fully confronting anxiety can be different, but one thing is commonly found despite the stage of understanding/awareness/acceptance someone is in with it: lack of control of the unknown can feel paralyzing. 

My plan over the next few days, weeks, and months if needed, is to establish a routine for our family that allows us to operate in an expected manner which I can control. This doesn’t mean things won’t go awry - they do on an hourly basis in life, let alone when you are on a journey with autism. My hope is when they do decide to derail to the unplanned, that I can take each situation as it comes, and hope to put the caveat of “unprecedented times” where we are just “trying to survive” until we return to the recognizable every day, and find moments in that understanding to breath through whatever’s happening. 

Because I know what anxiety feels like in my body, when I am present in the moment, I can recognize it when it’s happening, and work to stop it before the weight of it becomes too much to bear. What does yours feel like? What does the weight of your anxiety feel like? Maybe the more we share, the less those who haven’t met anxiety, or someone working through it, will stop assuming we’re worrying for no reason. 

Ways You Can Support Someone with Anxiety

Typically spending time together is a really awesome way to help someone in need of a break, but with social distancing that’s not quite as easy. Here are some ideas that could still help: 

• Dance It Out (Virtually): Find your friend’s jam, Facetime and dance it out. Like I said, moving your body naturally produces endorphins and there’s science behind how this can help battle anxiety. If dancing isn’t your flavor (come on Grey’s Anatomy fans!) maybe yoga, or meditation together could work for you.

• Check-in: Text, email, call, Facetime, etc- Anything to let someone know they aren’t alone can help while social distancing.

• LISTEN: When you check-in, or if that person reaches out, the most important aspect is to listen. They aren’t asking you to fix it, but just to sit with them in it until they can breath again.

• Provide Laughter: Send a funny GIF, tell a silly knock-knock joke, share the thing that happened that day that is so ridiculous you couldn’t have written it for a comedy script, that makes someone laugh. Laughter helps you to breath. Put your funny pants on and make some magic happen. (Adding one of my favorite home videos below for your amusement purposes… please don’t judge our parenting. It was 5am and we were desperate.)

If you are like me, and feeling even the slightest bit anxious, remember this: we can’t control what we can’t control… but we can control what we can. Focus on the can. Find wins and reassurance in the everyday moments that you made possible to keep you grounded. And breathe. It’s so important to breathe. I’ll be right here breathing with you. We can do this, because this too shall pass. Xo

Our Little Luca...

Sometimes, being accepted and seen, for who we are, is exactly what we need to succeed.

This is Luca. He’ll turn 5 at the end of August, and is finishing his second full year at an amazing school in our town, where the strides he has made since he arrived take our breath away. Just yesterday, I met with his team of teachers that work with our boy for over five hours a day, five days a week, providing him the opportunity to strive as he has. (Yes, you’ve read that once before, when I described his twin, Jack, just days ago.)

As a twin, I know Luca entered this life in constant comparison to his brother Jack. When they both arrived at Moose Hill at age 3, they were given separate IEP (Individualized Education Plans), as each had separate needs. Uniquely designed goals and objectives to work to bring each child closer to a successful integration in the classroom when it came time.

Luca’s parent teacher conferences are structured differently than Jack’s, as Luca only just integrated part-time into the classroom. Jack had advanced to a partial integration last year, but fully integrated this year, which is why when I met with his team, we were able to do so in less than 20 minutes. For Luca, I set aside an hour plus, because I always know that I’ll get such wonderfully intentional attention.

My time at his school that morning started in observing behind the classroom door. Luca has trouble with transitions, particularly around when I arrive at school, because it typically means he’s sick, or has to leave for a doctor’s appointment. Although I’d be allowed to observe in the classroom, knowing he’s not quite ready yet, and not wanting to interrupt his learning, I take my place hidden in the hallway, where I can watch how he interacts with his peers.

That morning, Luca was the class helper, and was excited to invite his friends to line up. I observed how he played alongside so many friends, with a consistent noise and activity level that he seemed to work through with ease. Just last year, this would have sent him off the deep end. But there he was, working with his aid on stacking cups, identifying colors, and reading books with the sweetest smile across his face.

His INCREDIBLE teacher - yes, I know I reference the administration at the boys school with this word on the regular, and it’s not for a lack of a decent vocabulary, it’s merely that they simply are INCREDIBLE. They are angels, miracle workers, gifted human beings who’s kindness radiates throughout everything they do with our children. I am at continually amazed at how gifted these people are.

His incredible teacher shared with me all the progress he’s made, noting that he is interacting with such thoughtful connection to peers, needing to say hello to each that enters the classroom, and taking time to say goodbye to each before he leaves. (Yes, my papa is in heaven smiling down on this because his Italian grandkids were always taught you give love to everyone in the family both when you enter and exit a gathering, no matter how long it takes.)

She shared that Luca has improved dramatically with intentional eye contact, and although the scripting has been constant, his language has also come so far, and that he has begun to generalize behaviors for each and every aid that he works with - not just the ones he has already paired, bonded with, and prefer. This means that he participates in conversations, naming items when instructed, following directions for activities, and initiating requests of tacting/manding for any adult partner that he works with, even if they change sometimes on a weekly basis. For the last year and a half, Luca has steadily had a consistent aid each six months, and each relationship has been so incredibly special to him. Any time he had to transition to a new one, we’d see the ramifications and after math at home as he worked through the abandonment and the repairing. The fact the he was truly beginning to learn to trust and adjust with ease was such an amazing win!

When I ask how his aggression is displayed in the classroom, bracing myself for what I expect must come as her answer, she explains that because he has an aid at all times, they only see it during auditory overload- when certain friends have louder moments, and even then they will only see him attempt to “bop a friend on the head” - as most times they are able to redirect the behavior before it successfully connects to the target.

We discuss the differences in his behavior in the classroom, and at home, identifying that Luca definitely has auditory triggers that cause the aggression in one of the sweetest boys you could ever meet. She assures me it’s simply his frustration with not having the language he needs, and that the more we give it to him - he will learn to dial back the aggression as the communication starts to connect with diminishing the auditory overload.

We observe his behavior in the classroom for 20 minutes or so, and then go to meet with the rest of his team in the front office conference room. We celebrate how far he’s come, discussing the many achievements he’s tackled over the last year, and we strategize on how we can continue to work in parallel, both in the classroom and at home, to keep the progress steadily moving forward.

When it came time to talk about the future, we did so about both of the boys. Luca was clearly not ready to move ahead to the Kindergarten classroom. Despite that he had made progress, he simply wasn’t wear Jack was, or the rest of the peers in his age group. Being born in August, both the twins are still very young compared to peers, and since Steph and I had discussed in detail our hopes that they would stay back a year to give them the very best chance to succeed in the years ahead, I made the ask. I had plugged the hope during Jack’s parent teacher conference, but was now sitting with the chance to really solidify the reasoning behind the hope.

We don’t want to separate the boys, even though we think it’s wonderful that they are in different classrooms. Where Luca is externally displaying delays, we believe Jack is internally displaying them, and think they both could benefit from another year in this amazing program. I’m not sure what they’ll decide, but fortunately will know soon enough, as both the boys IEP meetings are this spring, where all members of the team for the boys, including their teachers, administrators, and us as their parents, will work to design what the next year of their plan looks like.

What a gift, to be given a team of individuals that wants nothing more than for your child(ren) to succeed. Truly, what a gift.

I know I noted that Jack will make friends anywhere, despite if our holding him back will require a different classroom with new friends. That is his magic.

For Luca, our little Luca, we’re still learning about so much of his magic, particularly the love that lights his heart about the things and friends he cares about. Right now, Luca loves all things to do with the sea, particularly sea animals. He can name EVERY animal that lives in the ocean, and even some in different foreign languages (thanks, YouTube). In the next year, I anticipate that Luca will find the words. He’ll find the words to replace the aggressive behavior that comes from not being able to say how you feel, when you are so lost in frustration you don’t know any other way out. In the next year, I think the sweetest little song that is in his heart will fill with the lyrics of not only his current favorites: Mulan’s Reflection, Elsa’s Show Yourself, and Tip’s Towards the Sun; but of songs we have yet to hear that will capture everything he feels in his own words. Music is where his heart soars in song, and one of the first ways he was ever able to communicate. We can only hope that he holds onto the love of song for years to come.

He'll Make Friends Anywhere...

This is Jack. He’ll turn 5 at the end of August, and is finishing his second full year at an amazing school in our town, where the strides he has made since he arrived take our breath away. Just yesterday, I met with his team of teachers that work with our boy for over five hours a day, five days a week, providing him the opportunity to strive as he has.

When he was first evaluated by the school, they estimated that he was approximately 12 months behind his peers, in all of the five areas of development, but particularly in speech and gross motor skills. Yesterday, while sitting in the smallest chair, at the smallest table, with five other adults, discussing his progress over the last year, I was humbled by our boy.

I listened as these incredible women (yes, he’s surrounded by INCREDIBLE women who are invested in his future and everything that it holds) rave about how he has interacted with peers for extended play; how he has mastered writing out his letters - particularly those in his name; how he no longer needs to rely on incentives to complete unwanted tasks; and how he is beginning to relay stories that relate to the questions that prompt them. My cheeks hurt from smiling as I listened to this progress. Don’t get me wrong, we knew much of it from observing his interactions and conversations at home, but to hear the pride in their voices as they shared where they saw him excelling was beyond touching.

At the beginning of the school year, Jack relied on stories he’d learned and mastered retelling, in order to be part of a conversation - particularly that of The Big Bad Wolf. Now, when asked about what he did this weekend, he shares in great descriptive detail, the many stories of our adventures. Although his lovely speech therapist was kind enough to not share everything he’s shared with is peers, reassuring me that they only believed about 50% of what students shared on any given day (PHEW), she did shay his conviction made her proud of how far he’s come.

The last time I sat with these women, they asked my thoughts on potty training. Despite that we had tried for nearly six months and failed miserably, I was game if they were! Yesterday, we all celebrated in that outside of overnight diaper’s and the occasional accident, Jack is nearly completely potty trained, something we were starting to question on if it would ever happen.

One of my favorite moments of the meeting, focused on his interactions with his twin brother on the playground, as their classes shared recess together. The teachers delighted in sharing how Jack and Luca look for each other each recess, and play so well together, almost as if they missed each other during their time apart. Ya’ll, as you look at these images- the scars on Jack’s face are inflicted by that same twin brother. They do any and everything they can to get at each other when at home. The fact that out in public they actually miss and look to each other, thrills us beyond belief!

Jack is excelling. He’s made up for 12 months of delays in just two years. He’s making friends, maintaining relationships, and known as an extroverted and happy child. Jack’s tackling speech challenges, and understanding that not all activities can be preferred ones. He looks forward to school each day, and no longer needs assistance in his start to each day routine, or in his preparation to exit. He’s learning how to greet unwanted activities pleasantly, and without fighting the transition.

Jack has autism. Jack’s autism is not displayed by the stereotypical traits one might associate with autism. Jack is learning what his autism means for his life, and more importantly, what tools and resources he needs to find success as he navigates life with autism. He’s making sense of difficult transitions, and that even though he feels big emotions, he can also be aware where feeling big feelings is appropriate, and where feeling them publicly is not.

Jack is still incredibly picky about what foods he likes, and there are weeks at a time where he limits what he is willing to eat to 10 foods or less - sour cream and cheddar chips being one of them (hence the orange remnants around his lips in these pictures). Jack still requires full attention when he’s anxious about something, and has a hard time understanding that someone else might need your attention at the same time too.

Jack lost a tooth, as seen here, at an indoor play place where he was laughing so hard enjoying about to go down a slide, and of course the net grabbed a perfectly good tooth clean out of his mouth, leaving the adjacent tooth that’s been dead since he chipped it over two years ago behind to adorn the now gaping hole beside it. Because of the stress that going to the doctors causes him, and other incredibly important appointments including two surgeries to have his adenoids removed and tubes placed in his ears have trumped a dentist visit, we have yet to take care of that dead tooth. For a while, I would photoshop it out of photos because I was so embarrassed that I couldn’t get him to a dentist. But this is part of the autism. This is part of understanding everything that autism can mean, because it’s as different and unique as every child’s life it touches.

Jack has autism. But as far as we’re concerned, he is a force to be reckoned with. He will be a game changer. A kind soul who helps others. A performer, because the kid can’t stop replaying “Lost in the Woods” from Frozen 2 as he works to memorize every line and every movement that Kristoff does during the song, part of his magic will be how he looks to entertain others away from their fears, their sorrow, and their worries, replacing it with joy. That is part of the gift of his autism. His magic is that he cares so deeply for others that he’ll do just about anything to make them feel better. “He’ll make friends anywhere”, his teachers shared. And he will. Both despite the autism, but also because of it.

Tomorrow, I’ll meet with Luca’s teachers, and can’t wait to share what we learn there as well… Stay tuned!

The Struggle Is Real.

Have you ever found yourself struggling as a parent? Where every time you feel like you finally have it figured out, whatever next age or stage hits and you are back to square one of the struggle? Feeling frustrated, defeated, and completely unsure if you can “do this”?

And then, to make matters worse, every time you ask a parent who is further along age/stage wise, when it is going to get easier, the hardest and most frustrating thing to hear was that it won’t. “Not easier just different” they answer- EVERY time.

Parenting twins with special needs has reiterated that phrase in our lives each time I have found myself questioning if I can “do this”, this weekend being one of those moments. 

The struggle is real. And each time in the heat of those peak struggle moments, where all reasoning is gone and I am left on a mountain of built-up of frustration, fear and anger, I convince myself I can’t. I get lost in resentment of thinking “if this doesn’t get easier, I will never be able to survive this.” Not the autism... not the parenting twins... not the having a third... not the what feels like working three full time jobs (1.) in the job force, 2.) as a mom, and 3.) as a spouse....) the combination of trying to do it all without directions or a rule book... each one of those has been something I could tackle at any given moment, but the combination of all of it on any given day feels like the struggle will defeat me. 

I found myself in a pretty pathetic pity party, crying uncontrollably in the weight of it all, after a typical instance occurred on just an average Saturday afternoon. I lost perspective. I lost patience. I lost my grip. I let my child down because in a moment he needed me, I couldn’t show up.

I then took space. Took a breath. Walked away. Accepted help. And found perspective again. 

Have you ever been in that moment of struggle? Where it feels simply impossible to tackle? If so, for the parent that’s in the struggle like I am, here’s what I’ve learned...

Each time it gets unbearable, it’s because soon you will have to be stronger, in a way you never realized. You are building muscle memory and agility to be able to stay calmer longer, find patience faster, and ...

This is your work out.

This is your more than you can handle.

This is when you are thrown the straw that breaks the horses back.

Because it’s not about if you quit. 

It’s not about if you give up.

It’s not about if the straw breaks you.

It’s about what you do in the after math.

You’re a parent. If you quit or gave up it was momentarily. Reality snapped you back to where you had to keep going.

Muscle memory kicked in of needing to respond to a child’s needs. The behavioral pattern of showing up takes over and you do... just like you have, over and over again... you show up. 

There is always a way...

Can you find it? Can you ask for help if you can’t do it alone? Can you be proud of yourself for being willing to try? 

Remember, when working for that ever important perspective, sometimes it’s merely a matter or can’t vs. won’t, or in this case, can vs. will.

In case this was merely the reminder you needed today, ya’ll... you CAN do this, and for your kids, you know you WILL. 

So pour a cup of coffee or matcha or espresso if you are in my boat, and go get the job done. Because this never-ending journey of parenting waits for no one, and has difficult and exhausting as the struggle can be, the moments uniquely amazing to your journey are yours, and yours alone, to savor and appreciate, only earned and created through the struggle you endured.

You’ve got this. Xo

What is an Autism Diagnosis?

What is an Autism Diagnosis?

According to WebMD, medically speaking it’s... “observing the behaviors of very young children and listening to the concerns of their parents.” It’s documentation by doctors stating that the child is “on the autism spectrum”, opening doors for care and support they wouldn’t get otherwise. 

For us, the autism diagnosis has been a gift. 

It’s been a lens with which to see our children with extra amounts of patience, kindness, acceptance and understanding. 

It’s been a gift to not judge our own parenting or let the judgment of others dictate how we parent our children.

It’s been a reason to relate to strangers outside our inner circle of friends, who are experiencing the same thing, or have in the past, looking to them for guidance and comfort, and providing the same in return.

It’s been an introduction to some of the most incredible educators/administrators/staff for whom we have the sincerest respect and gratitude.

It’s been an opportunity for us to ask more of those that matter to us, giving them the opportunity to show up in ways even they did not know where possible.

It’s been a chance to forgive our guilt. For the first two years of their lives we felt like we did everything wrong, particularly around not seeing the signs of diagnosis, chalking up the lack of language to be a “twin thing” or typical of the male gender’s learning delays.

It’s been a lesson in communication, teaching us every day that as humans we communicate on so many levels other than through speech, showing us connection at the most cherished level with our children.

It’s been a journey to understand that we don’t know what we don’t know. We have no idea on how to parent autism, but their diagnosis has given us permission to tailor our parenting to exactly what they need, each child uniquely different. 

It’s been a reminder that life is not what we expect it to, but that we can in fact handle more than what we thought because of the village that is behind us. 

An autism diagnosis for your child can be anything and everything you need it to be. If you’re questioning, fighting, curious about getting your child tested, the key is to do so early on. A diagnosis only stays for three years, and if your child is diagnosed before three years old, the opportunities for complimentary support are endless. If your child reaches age three, it’s so much harder to get the early intervention help that could provide your child the tools and resources they need to strive in the classroom/society, but more importantly, the tools and resources you could use as a parent to be there for your child the way they need you to. 

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