WHAT WE KNOW

There were so many moments after Alex first started to present similarities to her brothers, that I often questioned if what I thought I was adamant that I was seeing was in my head.

Each time she’d smile at me, or say, “love you, mommy” while seemingly locking solid eye contact, I’d hear that voice in my head question why on earth I thought she had autism. “She clearly loves fiercely and without hesitation, both thriving on connection, while also seeking it out,” I’d tell myself. “How could she possibly have autism?”

But then she’d leave the drawers in her room open again, even after I'd already closed them once behind her earlier in the day… and all the light switches had to be in the upright position, which typically meant she left a trail of leaving all the lights on in the house. 

She’d rub the ears of her lovey with such repetition that she could tell which well-loved giraffe (as we’d purchased multiple the moment we realized that was her chosen comfort lovey) were those of her preferred version, or one that hadn’t been there for all the moments she needed her because her ears did not feel the traffic and wear and tear of her troublesome fingers.

On the rare occasion I’d have to tell our well-behaved and people pleaser of a daughter, no, she’d melt-down into a complete puddle of shame that would take upwards of 30+ minutes to exhaust herself so that we could comfort her out of it. 

When I asked her teachers at school about if they were seeing similar behavior, they said not at all, and would beam with pride that she was one of their favorites and just such an easy going kid. Two of the most talented caregivers and educators I had seen to date, reassured me that Alex knew what was expected of her, and went through her days with ease and pride.

And when I pressed them, to provide explanations to why they were seeing what they were seeing at school: that they had a phenomenal routine with clear boundaries that children on the spectrum, particularly high functioning, would excel at because it was the same every day; and that yes, she was our carefree and fun loving kid because she had no problem playing by herself for hours, but at this age she should want to interact with her peers. 

Her teachers did not know, because they paid attention to each of their students, and simply adapted how they worked with each of them to how they learned best. They saw Alex’s strengths, and played to them, working their hardest to always set her up for success. While they did push that she definitely needed to be evaluated for speech, as she was significantly behind her peers in that area, they thought that once the words would come, some of our concerns may fade. 

The day care Alex was at when she turned 2, and is still fortunate to be at today, is an outstanding program, and she seriously scored the lottery with her teachers. I say this because without that knowledge, it may sound like I’m placing blame, which I am not. But you don’t know what you don’t know, even when you are as truly good as you are. 

On “Celebrate Friends” day, when Alex didn’t want to take a photo with her peers, we were sent home the most adorable photo of her widest grin in between the two teachers she adored so much. After the initial “Awe, what a great photo” moment, as I scrolled the feed to see how her friends posed with their peers they chose, my inner voice spoke up saying “pay attention”.

On the day that I arrived to school to find my typically “she had a great day” welcome halted by my girl in a shame puddle, shoulders full closed over, knees in a V shape and head down while tears poured onto her lap, on top of the picnic table,  I looked at her favorite teachers questioning the scene met with a smirk and response of: “We explained it’s not safe to dance on the table, and asked her to get down”. While simultaneously making my way to scoop that puddle of shame up into my arms and smother her with love, I laughed back “Oh dear, guess that’s one career we won’t be chasing, huh Ali girl!” putting all at ease while ensuring she felt safe in her spiral.

But then, on the day that I pushed back a bit, asking that they interrupt her routine and expect the unexpected from her, they suggested that maybe we were seeing certain behaviors at home because she was learning behavior from her brothers. In the moment I bit my tongue as tears of frustration and fear welded in my eyes, and did the best I could to just get Alex to the car without completely breaking down in defeat. 

When it came time to have them fill out the forms the state requires of both parents and educators for an autism evaluation, looking to compare her behavior at school with her behavior at home, the comparison looked as if the forms were describing two different girls.

I want to reiterate here, that you don’t know what you don’t know. And when you love someone, especially the way I know these amazing women love our daughter, your mama bear defenses can go up, ready to argue anyone who says there’s something off with your cub. We couldn’t love them more for it, and we do understand why we were seeing what they weren’t.

But when it was finally time for Alex’s evaluation and my daughter and I sat in front of three new women whose job was to determine what they saw of the young girl in front of them, the conflicting forms gave room for the evaluators to see only the obvious, without taking any time to determine a behavioral baseline and understand what was in front of them. 

Even after an hour and a half of observation, much discussion, and many questions looking for greater clarity regarding the discrepancy in the forms from school and home, the three doctors sat with confidence when they told me they saw no signs of autism in Alex.

I sat in disbelief as the doctors shared that the girl they saw in front of them had too much autonomy and confidence, worked too hard to engage, and had far too great of abstract thinking to possibly be on the spectrum. 

When asked to give specific examples, as I had also been present for the entirety of the evaluation, very confused as to what I saw was so clearly different from what they saw, they shared the following confidently:

Alex displayed great autonomy as she completed the tasks asked of her at the table with one of the doctors, consistently looking back with pride and confidence to “show off” to mommy each time she got an answer right.

During the time when a doctor purposely ignored Alex, my daughter worked diligently to get her attention back by laughing loudly and asking the doctor “if she was so funny!”.

And then finally, as my greatest confusion in their conclusion sat on the concept that my three year-old who was struggling to find her words and communicate in general, could have too great of abstract thinking at this stage of her life, they said that she had no hesitation taking two objects that had nothing to do with each other to create a game that displayed her wits and creativity.

As every emotion swirled inside of me, I whispered to myself, you don’t know what you don’t know.

I gathered whatever strength I had left, trying to seem composed and unphased, and asked, “do you think you had enough time to determine a strong behavioral baseline to support those conclusions?”

The doctor’s posture stiffened, her arms crossed pinning her clipboard against her chest, and she said “I’ve diagnosed many girls on the spectrum over the years, and know what I’m not seeing.”

I nodded, trying to smile, but feeling sad for each girl like mine who had come in and performed exactly as she was taught, and been dismissed by this incredibly brilliant and impressive doctor (because she truly was). 

As I rose from my chair to leave, and held my daughter’s hand tightly in my own, she gave me one final piece of advice: “you need to parent her like she is a neurotypical and she’ll act like she is a neurotypical.”

My heart still hurts as I sit in that memory.

I know how many lost and confused parents that very talented doctor comes across each day. I know because my wife and I were those parents when we had the boys evaluated. We had no idea. Those parents are looking to her to tell them what they don’t know, where this time around, I was dumbfounded that even when I explained what I saw, she refused to consider the possibility she did not know what she did not know. 

I know that our daughter does not flap, or line her toys, or display a lack of interest or attention in human connection.

But I also know that our daughter has lived on her tiptoes since the day she could walk.

And that when we first got into that evaluation room, she looked to me in fear, but understood that when I told her “It’s ok, you’re safe”, that she was to go on and participate in the evaluation the way she had in the 4 similar sessions (during the last three months) with all female staffs, in white rooms, with random toys. 

I knew that each time Alex looked back at me, displaying that “confident autonomy” the doctor (who’s Alex’s back was toward) was incorrect in reading her body language, and that Alex was looking for acknowledgement that she was participating and ensuring I saw that she was doing well, as that is what we people pleasers do - look for confirmation that we are doing it correctly.

I knew that when the doctor ignored her, my daughter got so nervous that she’d done something wrong, she performed what she knew (to make someone laugh) in order to not fail, because even at this young age my girl is in search of perfection, despite that had the doctor continued to not participate - or worst, told her that she had failed, she would have melted into a shame puddle and the session would have gone incredibly different.

I also knew, that my tomboy of a daughter, who only wore her brother’s clothes, and had no interest in dolls or dresses, knew just what to do with the snot sucker (plastic bubble tool that you literally put up a child’s nose to suck out their boogers), and nerf dart she was handed; not just because she is obsessed with her brothers and their interests, but because her very thoughtful uncle had brought three rocket kits as gifts just days before to play with each of them, where they worked for hours to put a styrofoam rocket (basically a very large nerf dart) onto a plastic tube that was connected to an air pocket that when jumped on, blasted that styrofoam rocket into the air.

Had the doctors looked at my child, the way her teachers did, as an individual to be evaluated not for what she might have in common with children typically known to be on the spectrum, but as the third in a family with diagnosed autism displaying textbook signs of what a high functioning girl on the spectrum displays at this age, they would have altered their standard testing for boys her age, and looked to get past what her behavioral baseline was, to see what the doctor who spent days with her only a month ago saw clearly. 

But as we don’t know what we don’t know, I share this with you now, in the hopes someone else will learn what they need to in time for someone who’s parent hasn’t researched autism for 3 years, and whose child isn’t experiencing an academic interruption to where others may take notice.

This article sums up what I’ve learned to be true for high functioning girls on the spectrum who are hiding in plain sight.

Symptoms like delayed speech, meltdowns without an ability to self-regulate (or shame puddles as we call them), irritability/inability to be flexible with change, the need to self-sooth (by rubbing her lovey’s ears) despite a lack of displaying repetitive behaviors (like how Luca flaps), and attachment to certain objects despite not lining them up were all things we identified early on with Alex, and see in high definition since understanding how they display differently in boys and girls. 

As I continue to share our journey, I’ll try to give greater detail of specific examples that may help break the stereotype that keeps so many of our girls hiding in plain sight but for now, the most important thing I hope to share is the importance of a behavioral baseline. 

Often known as a mother’s intuition, a behavioral baseline is merely knowing what is typical for your child. When you know how your child typically acts, but find that in specific scenarios it is “more than her/his peers”, that’s when you can understand what neurodiverse wiring is. 

When the “more than” becomes the standard, then there is a good reason to try to understand it further - both what is driving the behaviors to understand what the behavior is trying to communicate to you, but also if the behavior comes from a “can’t/can” or “won’t/will” perspective. Neurodiverse children simply can’t self-regulate, so what might look to some as a tantrum (or a child working to manipulate a scenario to get their way), is actually a meltdown (where a child can’t self-regulate and get out of their own way to calm down in an appropriate fashion). 

The best way to know more than what you know is to get curious, really think through what you are asking, and try to ask a scenario in a few different ways. If all of the answers reiterate each other to be true, then the consistency should tell you there is fact behind it. If that fact is stating the child is experiencing an extreme difference than their neurotypical peers, there’s a good chance it’s because of the way they are wired.

During the last evaluation, when the same amazing teachers were given forms looking for what is formerly known as aspergers, their answers were very similar to our own. Yes, they had watched our girl experience many different shifts in routine, particularly after starting her speech therapy and participation in an inclusion classroom three times a week, only coming to them afterward. 

Simple shifts like the fact that every Thursday morning she had to watcher her brothers get on the bus that she would get on each day of the beginning of the week, and she wasn’t allowed due to no class for her that morning, would create chaos for our girl until she could find her place in her known routine with her teachers. As these moments became more frequent, it was easy to recognize what we had been speaking about at home, especially on the day we had to take her to the actual evaluation, and were not able to get Alex to go into daycare afterward, despite working every strategy we knew of while she nearly stopped breathing because she cried so solidly in the car refusing to get out of her car seat. 

These two teachers have now become even greater champions for our girl, and understand - and know - something they did not before. They know that we never once were trying to say something was wrong with our girl, or fight for a label that could create unwanted diversity for her for the rest of her life. They know that we knew she needed more than we could figure out on our own, and that there were programs out there that could help us create a map to follow to get her what she needs. 

I know this was a lot to put into one blog post, and if you stayed with me- I appreciate you more than you know.

To all the girls who have grown up feeling lost and completely unsure of who you are; shameful for being known as dramatic despite how exhausted you are working to be what everyone else needs you to be; and know what it means to be frustrated for feeling so stupid despite knowing your intelligence that can’t be found in a moment of big emotion - I see you. You are not alone. 

There is a generation of women learning about just what our wiring looks like, why it makes us understand a situation to be what it is, and as one of them willing to be completely vulnerable as I work to make sure my daughter knows she is worthy, enough, and protected, I promise you that any answers I find I will share with you. We are not alone in this. xo

THE IMAGE

Photography was always something I was drawn to. 

First in college when I walked the walls of my alma mater and learned that one could take an extra curricular and learn how to capture an image, expose it to the world as how you viewed that moment, and then look to that world on their opinion of your vision.

As someone who was already enrolled in too many courses, working on a double major with a minor, the class just never rose as priority enough to make it on my schedule.

As social media became the way we expressed ourselves and sites like MySpace and Facebook brought opportunities for creative expression and communication, I learned how images could show connection, importance, and participation in activity that gave an appearance of being part of something. If you were in a group photo showcasing smiling faces and the capture of a good time, then you must be someone others wished to be around… aka worthy of others' time.

But then, when my cousin died unexpectedly my senior year of college, and I found myself lacking any photographic evidence of our time together, I learned that photographs did more than just suggest moments in time… they froze moments in time to remind you what they felt like when memory begins to fail you decades later.

It wasn’t until my wife and I arranged to have our engagement photos taken, in the most serene New Hampshire setting, that I learned that photography could also teach someone in a way that words could not. Those photos, where my heart was undeniable, and I stood in my truth for all to see, showed me that there was a way to explain to my family who had never truly known the women they were about to see in those photos, could and would believe my truth without question.

When I started this blog, I believed that the years I spent practicing photography and working to capture others' memories as they hoped to remember them would provide my readers insight in a way a blog without photos could not. I believed that as I shared our journey with autism, I could show the connection, love and empathy each of our children have, while discussing the struggles we were working through as a family, in the hopes that any misconception someone may have about autism could be challenged by a photo showing a child who is loved and not only knows how to love, but chooses to love in return.

For the last two weeks, I have written incomplete drafts on where to start on catching readers up on our last year, and where we are currently, that simply could t find traction. Although I hope I am able to use them at one point, my stream of thought simply keeps returning to photography- and my why around it.

There is a reason why over the last two years, images of parents struggling, looking worn and distraught, near the edge of no return, have gone viral on the internet, sharing stories of just how hard parenting has been since COVID began. 

Sure, I have shared a number of them on my own social accounts, and even written many of my own, that were shared on my behalf as well. But I am going to say what every parent/caregiver already knows about why they’ve gone viral, but never wanted to admit. Ya’ll parenting has always been hard. 

True, COVID took down any escape one had from parenting when child care of any kind was no longer an option, an escaping to a workday with coworkers who felt like family was no longer such a relief of a retreat… but there have always been laundry rooms overflowing with laundry that is lucky if it gets cleaned forget folded and put away to be easily accessible when a family member needs to get dressed… there have always been (and will always be) houses where voices bellow from every nook and cranny as they work through whatever hard they are going through, that neighbors can hear without any privy to what the hard is causing such a racket… There have always been (and always will be) individuals keeping the group of humans under one roof going, without ever feeling seen or appreciated.

What COVID did was take away the space to breathe and reset in between all the hard, forcing us all to operate at full capacity, without any space to have “life’s hard things''that we would once have capacity to bear, feel unbearable. As someone who was handed what feels to be a never-ending unnecessarily level of hard nearly six-weeks ago, I can tell you first hand why no photos have come from our last month as a unit showcasing the less-than-hot mess we are functioning at. I can tell you the snapshot of a human I have looked like at morning drop-off in front of so many of my children’s peers and their parents that initiated check-in calls and faces of concern and pity. 

But just as I was trying to figure out what on earth I could share lately that could be of any value to someone else on this journey, I found myself chatting with another mom I admire greatly, about something as silly as fresh pasta I found at Market Basket. What had felt like such a selfish treat for myself, as it was not something anyone else in my family would eat, and would take easily 30-45 minutes of my attention away from a chaotic evening hour on a school night, had felt like a moment where I had put myself first in a way I hadn’t since my wife had her injury two weeks before Christmas.

As that mom had shared her excitement I had discovered what she and I both felt to be such a luxury, I swallowed my guilt around what something so simple felt like, and then continued our small talk like usual… until I found myself admitting why I was so excited about the meal that had made me feel like I could breath for the first time in weeks. 

Thankfully, I didn’t list out the number of lunches I had made, laundry I had done, rooms that I had picked-up, emails that I had returned, parent-teacher phone calls that I had taken, meals that I had cooked, or dishes that I had cleaned. I didn’t confess that I had begun to resent the sound of “mommy” because all I felt I heard lately was, “Cinderella” which is why I was losing my cool so often and had become this martyr version of myself that I didn’t even recognize, or that everytime someone asked me how my wife was feeling through recovery, I wanted to scream “she’s enjoying every moment of my dream of getting to watch netflix all day with meals served to her and no kids around!” 

Instead, I thought it best to ask for advice, because just that day I had spent an hour in therapy and despite that I felt good after leaving, found my presence at home to have not improved, and started to worry if I could really keep going. Here was the perfect insider to ask, so in the attempt to put my own life jacket on so that I’d be able to save others, I went ahead and asked some exhausted and full of self-pity version of the question no captain of the ship wants to be asked: “How do you do it all?”

As the words were sent though the digital atmosphere, and I was able to breathe again remembering the meal, feeling less guilty with the confession, I found myself stewing in a different kind of guilt. 

This mom I admired and was so fond of, I had had similar conversations when COVID first started about how impossible parenting during a pandemic was. I had applauded her each time she had posted an activity with her boys that seemed just so FUN and intentionally present for kids, in easy that I wasn’t able to when I was overwhelmed with my anxiety of how to make it through another hour before bedtime when our kids seem to be at their peak of exhausted energy and chaos. I wondered why I couldn’t seem to be that kind of present for our kids, and often wondered what it would be like to parent neurotypicals.

This mom had been someone that when I had the chance to take her family photos, I shouted publicly from the rooftops how truly amazing she was in each share of each photograph of her smiling boys that gazed with such love and appreciation up at her. I only knew of her what she shared through her social channels, and what she shared with me in conversation but she was someone I believed deserved every glowing review one could give her.

I believed that because the first time I had met her, was as a brand new mom, in her home, to take newborn photographs of her first son. She had been a friend of my wife, who had seen my work online, and liked it enough to hire me (and pay me her hard earned dollars as a self-taught photographer) to capture her beautiful family in their first days together.

When I took those family photos a better half of a decade later, skills vastly improved from the first go around, she was still holding closely to two of her men that loved her. The difference was, that in our last shoot, the mom stood proudly with two sons, and in the first, she sat with her husband gazing adoringly at their first born. 

This mom that I felt so guilty confessing my selfish reclaim of some “self-care” as I tried to survive what felt like single-parenting and then some, had been doing it for years, not weeks. In that moment of entirely selfish guilt, when I asked her unfairly how she did it every day, she humbly shared some tips and tricks that did make it easier. She said that although she tried to post what was fun or funny about their chaos, they were only moments of the real thing. And that often, she felt everything I was currently feeling. She confessed that on days that the unnecessary hard felt unbearable, she held onto the reminders that her kids think “the world is a really pretty place” as her son had told her one the car that afternoon. 

Her humility in that moment gave me the strength the next day to say all the things to my wife, who is still here, that felt unnecessarily hard since her accident, without concern for how it could hurt her, because I had been walking through the last six weeks bottling it up inside like I was alone, and needed to realize I was not. 

In what was definitely an emotionally charged discussion, she ironically brought up that we were not that family in the photos we hung on our wall, or that I shared in my blog with you. That what we were in currently didn’t feel like those smiles of love and connection and empathy, implying that those felt dishonest and a coverup to what we show to the world.

In that moment I was able to say clearly, what photos like those mean to me, and why photography has been all I can think about for the last two weeks as I try to find something to share about our journey that could mean enough for someone else to be worth a share.

I don’t believe we take the photos to tell a lie to the world. Photographers, like myself, don’t take ten times the amount of snapshots at a photo shoot, to then spend hours culling those images to find just the right ones to hopefully edit (and sometimes even combine) to showcase a lie of smiling faces of children who look up adoringly at their parents with love. The final result of photos that are shared with the world, that we keep with us over time, as we age, change, grow, and sometimes don’t always stay as the same humans in that photography are taken for one reason: to remind us of the truth as to why this life can feel so unnecessarily hard.

As Glennon Doyle has made so catchy (and a mantra I hold tightly to) from her book Untamed, when we choose to: “we can do hard things.”

We take those photos and have a professional spend hours getting a chosen few just right so that we can look at them during the unnecessarily hard to remember why we are here in the first place, and why it’s important to continually remind us that we can do hard things.

We take those photos in the hope that our kids will remember the moments we show on social media and display them on our walls so that they have something to show to their kids in the years when we are gone. 

Through what felt like a never-ending river of tears that had been barged up for six weeks and finally busted through that dam, I told my wife that we take those photos so that when they try to remember this chapter she and I are navigating so poorly, that we figured out how to do it together, and that when you are in a marriage it will not always be easy, and that it will take work and effort, and choosing each other each day to keep going.

We don’t share the hard with the world every day because it’s not what people want to read when they’re scrolling their feeds. They want to think you are who you are in those photos so that there is something to work towards, not just sit in when you have to make the choice to do the hard or not.

But we can, and we are, every day, doing the hard things. 

Focusing on the photos that remind us why it’s all worthwhile, and hoping the work put in now, provides so many moments for photos for decades to come. 

To the mom who shared with me that every moment isn’t fun and intentional, but it is possible and I am able to choose to do the hard things, you are my everyday hero, and your boys are so lucky to have you. 

To all the parents out there, who know what I mean by covid didn’t make parenting hard, remind yourself that what’s hard is when we feel like we are losing ourselves without any time to breathe in between the hard things we choose to do every day.

To the friends and family members who have helped our family over the last six weeks, and particularly to my sister, Granny & Pop-pop, most amazing nanny, and dear C family for continuing to make sure we remember this is temporary - we are forever grateful. 

And to our incredible kids, when you read this one day, remember that your moms love you, and are real people trying their best to get through what can feel unnecessarily hard because you three are worth every second of it. The easiest part of all of this is loving each of you. Don’t believe us? Look at all the photos… xo.

What It Takes

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So, what does it take?

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

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

What do you need?

“What do you need?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And then it hits me.

I need to know it gets better.

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

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

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

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

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

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

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

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

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

Our Village

“It takes a village”, they said.

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

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

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

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

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

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

Sincerely, Christina. XO

Are you grieving?

The five well-known stages of grief are: denial, anger, bargaining, depression and acceptance. Until recently, I didn’t realize what I was feeling was grief, but now that I’ve made my way through all five, I thought I’d share in case helpful for anyone else…

I can remember hearing people say “this isn’t a big deal”… and “I’m not taking it that seriously.”

I mean- yes, I agreed on the toilet paper ridiculousness. Milk, bread, cheese- sure, but toilet paper? Still don’t get it…

But those first few weeks, I feel like we were all in denial. I know I was. 

I thought, “this is temporary, everything will go back to normal tomorrow.”

For me, it lasted about two weeks- and only a week of homeschooling, since our school gave us the first week “off”.

After the first week of filling out forms, taking photos, working on apps, and ignorantly believing I could create the school day in our home in a way that our autistic twins would find comfort and confidence in the routine that ended without warning. 

And then, the second stage hit: anger.

Granted, I had every right to be angry. I lost my nana, the matriarch in my family. But, I found that I started blaming anyone for anything because, quite simply, I was really mad.

I was not alone- my four-year-olds were with me. They yelled and screamed, and stomped their angry feet (calming tactic in this household). They were sick of doing the bear hunt, or practicing the letter “C”. And they started to take it out on each other. 

At one point, not that I’m proud to admit it, I was even mad at their school. How could they think that our autistic toddlers could actually get the services they need from home? (Clearly unfair of me to say, their administration is amazing, but I was mad, and needed to stomp my angry feet).

This lasted about a week for me. My practical self found it’s way to bargaining, and started to wish for any hope of summer school, claiming that if only this was happening to me ten years from now, when zoom calls could work for our kids… or if only I had arranged for services in the home to help the boys with OT and speech, then maybe we’d be able to provide a similar structure to what their used to… or if only I could set up an outdoor playground, complete with trampoline and a swing set, the boys would have everything they need to fill their days which means they’ll sleep at night…

I’m not going to lie… I did convince my wife to let us get the trampoline, and it was worth every penny! (If you need one, check this one out. Our friend did a ton of research and got it, and when I researched it, couldn’t agree more, and it’s SO amazing for the kids and their energy needs.)

And a swing set is in her shop, freshly painted, ready to be assembled thanks to an incredible human being who not only gave it to us for free, but kept it in his garage all winter when we forgot to pick it up last fall. SERIOUSLY incredible human being.

And then, last week… I hit the depression stage. I let my anxiety get the best of me… every time I read a headline that said school was officially done for the semester, that summer school wouldn’t happen for our kids… and that some areas were going to stay at the current status quo until August… I just got sad. Unbearably overwhelmed and sad. As it was raining, I gave our crew permission to quit school that week, saying if we got anything done at all it would be too small a win to count. The drama got a hold of me (and my kids, mind you) where I started to feel like this was the end… the end of all that was good… and how on earth could we ever get through this?

Thank heavens this week I found acceptance.

It’s like out of no where, it hit me. Snap out of it, Christina! Yes, we don’t know exactly when this is going to end - but it will end. Yes, it may be almost a full 9 to 12 months of school the kids have missed, but they will go back to school. Yes, the really tragic loss in this country will continue on, but eventually, it will stop. 

If you find yourself in any of the other stages before acceptance, maybe this mindset will help you give yourself a little grace, because whether or not you’ve physically lost something, you are experience grief. You are grieving what you thought your life would be right now, and the reality that a loss of that size has had an earthquake of an impact on your life. On what it was, what you thought it would currently be, and what it is to become. 

Defining moments are happening around you, and if you are like me, stuck in any stage but acceptance, you might be missing them. 

Moments I’m now paying attention to include: 

• Letting Jack need to hold my hand to fall asleep at night, and only mine. As exhausted as I am, he’s not going to want to do that forever. And as much as it’s DRIVING ME BONKERS that he literally needs me all day, it’s a humble reminder that one day he won’t need me, or even want me, and that will be the moments I’ll wish to have back. 

• Mustering up the energy every time Luca locks eyes, and excitedly begs “two eyes, nose, sharp teeth”, waiting with such sweet anticipation for me to make a scary face, raise my hands up with pretend claws and say “It’s a bear!” and chase after him for the 100th time that hour because he’s fixated on “The Bear Hunt”. I know it’s because it’s a world in which he and I understand each other, where I’ve gotten to his level, and listened and validated what he needs, despite any communication barriers. 

• Having a toddler during quarantine has been such a unique blessing. Alex lights up my day every time she barges through a room, shifting her hips in excitement, without a care int he world. Her smile and giggle just melt your heart. And as I watch her love her brothers, with such unfiltered admiration, learning from them, and teaching them at the same time, it gives me such needed perspective. And the moments when I feel her learning from my wife and I, like how when she’s really tired, and just wants to be loved, or give love, she will let you hold/rock her, and will softly rub your back, almost like she knows you need it, but with an equal encouragement asking you to rub hers in return. 

My best advice, after making it through all five stages, is to just hang in there. You’ve got this. Look for the facts in the situation that will help ground you in reality. Just make it to acceptance where you can remember that although this is hard, awful, sucks, and even unbearable at times, there’s such incredible collateral beauty in all of it. XO

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!

And then, there's Alli...

More often then not, when I share our journey with Autism, I’ll write in detail about Jack and Luca, as the diagnosis with Autism lies with them. But really, it’s all of our journey with autism. Not just the twins who are navigating each of their unique diagnosis, or us as their parents learning how to parent it every day… it’s her’s too.

Alli is neurotypical, at least from what we know so far. She’s spunky and sassy, and sweeter than sugar. Girlfriend has a waddle that puts a penguin to shame, and a heart of gold that can melt any of your worst fears away. She loves to go to daycare with friends, can’t only have one oreo - ever - and has a sweet spot for her Pop Pop, in a way that she never holds back from him.

When Alex is sick, all she wants to do is snuggle on the couch, and although she’ll chase after her brothers like the best of them, she’s also more then content to get lost in a good movie. When she’s hungry, she’ll eat anything from a cheese stick and raisins, to carrots and chicken, to won ton soup and crab rangoon - no limitations or hesitations on anything we put in front of her. She takes medicine when she’s told, especially when she doesn’t feel goo, and she’s slept through the night since 2 months old. When Alli wants something, she asks for it, and if you can’t understand what she’s telling you, she brings you directly to what she wants until you can figure it out long enough to get it for her. And Alex understands when something is not “safe for her body” without too much fuss or an argument, or our needing to remove her from a situation so she doesn’t hurt herself. Don’t get me wrong, she is a toddler, for sure, and there are caveats to everything listed above, but she’s a typical toddler, something that was foreign to us before our rainbow baby.

She’s our third child, and like most third children, she gets the benefit and the cost of having older siblings. She has tiny humans to learn from, and parents who aren’t on their first go-around, but she also gets less of the excitement when she accomplishes a first, and less of the individual attention. She has best friends at her disposal any hour of the day while at home - which right now, during COVID19’s quarantine, is incredibly handy - but she also has two other humans vying for her parents attention at all times.

She is neurotypical, and because of that, she’s provided us a different understanding of parenting, as we know she comprehends things that her older brothers cannot, and handles things differently as a whole. Although we treat all our children equally, the boys autism has taught us about certain comfort levels for foods, sensory overloads, learning, social settings, etc. For Alex, we’re learning, she’s pretty easy going, and outside of asthma and age appropriate bouts of stranger-danger, hasn’t really shown to have situations we need to prepare for every day like we do with the twins.

Where they excel, in certain areas of their magic, she may never thrive. She may never know the 80 different types of sharks that live in the sea (exaggerating on the number), or every line of the Big Bad Wolf in the 20 different adaptations there are out there. She may have to study really hard for a test, where her brother(s) have heightened memories and can remember anything from reading it once. She may thrive in social settings, have great groups of friends, and find that social interaction gives her great satisfaction, when her brother(s) may find great comfort in one or two friends instead.

I wonder what this will be like for her when she grows up. I wonder how this will shape her life, having two autistic brothers. I wonder what her perspective will be. I believe this child will be an empathic, someone who will be a caretaker, both in her field of employment, but also in her personal life. How could she not, growing up in the life that has chosen her.

Although I wonder about all the possibilities that could make her life full, and wonderful, there is a part of me scared to admit that I wonder about the chances that could make life feel like less, and potentially, resentful. Even the loveliest of human beings are human. Like in the amazing movie, Wonder, during the scene where the older sister admits that her parents never had time for her, and even those she loved her brother more than anything in the world, it could make her feel very alone at times- I worry that Alli could be sad that the twins require so much of our time.

I think, for all our children, all we can ever do is try our best, and hope for the best, while remaining aware and in tune at all times. This happy-go-lucky toddler provides no room for concern at the moment, and very well may read this one day and laugh at my “worries and wonders” because they were for no reason. At least, I’ll take comfort in that hope for now, continuing to share Alli’s story as well, because I do think it’s an adorable, important, and instrumental part of our journey.

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. 

Hey, Family!

When I met my wife, particularly when I first began to meet her friends in NH, I learned what the word “family” could really mean. In joking, she and her friends, would use the expression that someone was “family” if they identified a fellow member of the LGBTQ community. Now yes, the word could have so many inflections, that would be far more entertaining in a podcast - ones for if they thought they were attractive “family” or blatantly “family” - you catch the drift. But the concept was one so many of us our community related to, held on to, and tended to find comfort it. It was about recognizing your fellow brother/sister/human, who may or may not have lived through the struggles you did in owning your true self; who know what it feels to avoid glares of judgement or scrutiny; and who knows what it’s like to make daily decisions around how to live your life as “other”. Basically, it was almost like the “jeep wave” for the gay community - the head nod of acceptance - the instant awareness that you aren’t alone - better yet, you aren’t invisible, and I SEE YOU.

I took my kids to the playground this week, in desperate need to fight the challenges of February vacation where the lack of routine was driving them stir crazy, and their muscles desperately needed to move in the fresh air. It was 9am, so early enough, and much of the playground was still strewn with melting snow. Forty degrees and comfortable, we trekked through the snow to enjoy the swings, the climbing structures, and the many slides. Their cheeks beamed with happiness as they flew down the slides, and let their boots fly through the air as they swung back and forth. 

About twenty minutes into our fun, another family pulled into the parking lot. Two young boys, just slightly older than mine, raced to the playground, as desperate as the twins to soak in whatever sunlight would grace our presence that day. Jack’s eyes watched eagerly as they headed to the climbing structure the twins had ended up on. He looked to me for guidance, and I encouraged he introduced himself. Delighted to have the encouragement, he headed over to the boys and said, “Hi, I’m Jack Y.” - yes, stating only the first letter of his last name, as there is another Jack in the classroom and clearly this is how he is known with his peers. The boys looked at him, but when back to playing together. He tried again, and began to keep pace with them as they climbed to adventure down the slide. 

I was helping Luca climb to one of the higher more adult slides. I wasn’t able to get to Jack right away, because the ladder was slippery from the snow covered boots, and I needed to ensure he safely made it to the top. Jack left impatiently my side, and walked over to the bench, sulking sadly. I took a minute while Luca went down the higher slide, to let him know I would be with him as soon as Luca was down with this one activity, but that I needed to keep him safe because it was slippery. He nodded, understanding, and then looked to his left where the other boys mother had come closer with their younger sister. I smiled, waved, and she said hello. I went back to help Luca one final time, and then all four of our boys headed back toward the swings. 

We got to talking, and she shared that her son was on the spectrum. In return, I shared both my boys were, and she kindly admitted that she had heard how I talked to Jack about needing to be there for Luca in a way that she recognized. Apparently, my behavior felt familiar to her as well.

Her openness in that moment was a “Hey, Family”, and such a comforting one. I had forgotten what it had felt like to be recognized like that by a stranger. We talked for a while as the kids swung on the swings, even exchanging contact information to invite each other to group outings where many mamas of children on the spectrum get together to support each other. Soon, my boys were done, and it was time for us to go. I thanked her for her conversation, and said I’d be in touch soon. 

After I had gotten the twins into the car, and into their car seats, I sat for a moment in the driver’s seat, waiting for the DVD player to load, and just enjoyed that feeling. Since parenting autism, in the months after diagnosis and behavioral patterns have heightened to where my sole focus tends to be on my littles who never stop moving, I feel like there have been times I’ve forgotten to look up for adult human connection. When I’m at a playground with my kids, I’m more worried about what noises may trigger Luca, or if he’ll be patient enough to wait for another child to make their way down a slide, before plowing in front of them, unwilling to wait his turn- or worst, if he uses physical force to make what he wants possible, possible. I had coached Jack that morning to say hello to the new friends at the playground, and although I had looked up to be polite to the other mother- had she not approached me, I’m not sure I would have looked for that connection. Such an important reminder for myself, because those few moments connecting with another parent who wasn’t judging my children, or my parenting, gave me such comfort that I was not alone. That she too, had been wrestling children all morning, and knew the need to risk any snow potential injuries just to get growing boys outside to use their muscles.

Any chance we have to be seen, and to see others, without judgement, and in appreciation for our true selves, is a connection that should not be missed. Hopefully next time, I might be able to provide that to someone else in need… just a little “Hey, Family. I see you. We’re your people. You’re safe here.”

To the following groups in which I feel like I belong, in case you need to feel seen after reading this:

To the parents of little human beings who are trying to work full time: Hey, Family!

To the parents raising magical children with special needs: Hey, Family!

To the women who love the bodies that gave them their babies, but would love to find their body before babies again: Hey, Family!

To the spouses of entrepreneurs who are kicking ass and taking name with their careers, and in support of their achieving their dreams, you are picking up some of the slack at home: Hey, Family!

To the spouses who are trying to make sure their marriage is still a priority while raising a family, and after doing 10 loads of laundry, dishes, cooking, cleaning, etc (the list goes on) still work to make sure their spouse feels like the most important part of their day: Hey, Family!

To the dreamers out there who are constantly working to achieve those dreams, and willing to do whatever it takes to make them happen (for me, become a published author): Hey, Family!

To the members of the LGBTQ community, at whatever stage of happiness this life finds you: Hey, Family!

To the LGBTQ parents who are raising their families in a day and age where although accepted, the constant need to teach and educate those around you can feel like an additional job all in itself: Hey, Family!

To the LGBTQ youth, still trying to figure out your truth, own it, and be safe in owning it: Hey, Family!
*WE SEE YOU, WE ARE HERE FOR YOU, and I PROMISE YOU- IT DOES GET BETTER.

Feel free to shout out your “family” in the comments, or in social media in a share. We all deserve to feel supported, safe, and a part of bigger. XO

Can't vs Won't

Can’t vs Won’t…

It was a typical Saturday morning, wrestling kids over scattered toys in the playroom... too lazy to get out of pajamas, but full of pent up energy as the cold winter weather continues.

The house was a mess, and the playroom looked like it threw up all over itself. Luca was in search of something, but couldn’t communicate exactly what. I followed him out into the kitchen, as I watched his movements become frantic. Asking him if I could help, he replied with “bink” and I said “Ok,” but took a minute to grab a few toys on the floor in the other direction, so I could put them back in the playroom when returned to it, trying to be efficient with my efforts (because when are we not picking up toys!!!). It took a minute too long because when Luca saw that I said I would help, but my actions and body language told him I was saying no, his frustration overwhelmed him for being ignored. As it quickly bubbled over, he turned to notice his little sister walking toward him, pacifier in mouth (unconsciously rubbing it in his face), which set him over the edge. Before we knew it, he went to pull her hair to tell us how mad he was. He pulled so hard that when we separated him seconds later, strands were in between his finger tips.

After calming them both down, getting Luca his bink and putting him in a safe space while being held, comforting Alex separately, apologizing that we couldn’t protect her from just walking through the kitchen, Steph and I looked at each other scared. Luca’s aggression has peaked lately, and his go-to when frustrated is to pull hair. Poor Jack gets the brunt of it. And I can’t imagine how hard it is to be in Luca’s shoes where he has not found the words or understanding on how to safely express his feelings or ask for help to meet his needs, but watches both his brother (who used to share his struggles) and his little sister do so with ease. But as his parents, we are at a loss too. We don’t know how to give him what he needs as we aren’t trained in ABA or therapies to teach a child with learning disabilities to communicate. And what’s harder, is that Luca has the strength of a 5 year old (kid has a six-pack and is crazy strong) but the communication skills of a 2 year-old. Have you ever felt like you were trapped in the wrong body? Poor kid feels it to the extreme every day. 

To try to explain it another way… when we’ve worked with Alex over the last three months, since she begun discovering her sea legs, and becoming incredibly mobile with her sassy waddle, we’ve constantly been on the look out to ensure she avoids all corners to tables not realizing where her head now reaches. As she’s learning to navigate this world, we are constantly working to make her aware of the dangers around every corner, while letting her ride without the training wheels.

When I think of how this relates to Luca… his learning delays almost required him to live life with training wheels permanently attached for the time being, despite that he feels ready to fly without fear of eating pavement - not because he won’t… but because he can’t. He will be five years-old this summer, and his sister who hasn’t even reached her two-year-old birthday, knows how to express her emotions through words with more direct intention than he does. When Alex is sad, she screams, cries and asks for help. When Luca is upset, he bottles it up, holding it in, until he can’t hold it in any longer and it explodes out of him. As he is so introverted, we can completely miss for how long he is frustrated for until it’s so evident that we are in “danger” mode. In the moment it will feel like he’s acting out for no reason, but afterwards, when we retrace our steps, we realize that had we been paying better attention, we could have seen it coming, and more successfully prevented any hurt caused from our lack of notice.

Let me remind you. Luca’s magic is the love that bursts out of that small sweet heart of his. He can be the sweetest, kindest, most caring child. Our son is not a mean or vicious boy, but as we are working to give him the skills it takes to deal with the massive emotion that drives such aggressive acts, we are struggling with remembering and recognizing this one key factor of can’t vs won’t. In the moments we can realize that it’s not a situation of won’t - that he won’t just simply be kind to his sister, or won’t be more patient and trust that I’ll be with him as soon as I can, it gives us the perspective to remember that at this moment in time, he simply can’t be kind when his emotions are erratically racing through his body causing his temperature to feverishly heighten, and can’t wait any longer because maybe this is the 10th time he’s had to compete with two other human’s demands from his mother and at this moment he is tired of waiting. In those moments when we are patient and find grace to breath through any frustration we are feeling with the spiral of effects from this poor child’s moment of defeat, we are able to remember what we can’t vs won’t do as his parents. In those moments we are able to focus on the fact that as mature adults with learned perspective, if we don’t address him to let him know we hear him, it’s not that we can’t be the parents he needs, it’s in that moment, we won’t be the parents he needs, and so we choose to be better. We choose to keep paying attention, keep trying harder, and keep learning what he needs, even if those needs change daily.

We’ve been told by others to discipline the behavior, to put him in a time out, or simply “require more from him.” But I share this because it’s a perspective that may change the way you look any human behavior - understanding if someone can’t vs. won’t in the moment, can help you better determine how you could/should/do react in return. If Luca were to go in a time out, he would laugh- because he laughs when he’s sad or scared. It would not resonate with him, it would have the opposite effect. And heaven forbid he were to be “disciplined” - it would do nothing more than show him that violence is an acceptable response to unwanted behaviors. We can’t expect more from him at this moment in time. That little boy works as hard as he can day in and day out at school with his teachers and friends, and at home with his parents and siblings.

So, we choose to instead, meet him at his level. To remove him safely from the opportunity to hurt someone further. To make sure he knows we weren’t ignoring him and that he has our attention to help calm him down, for as long as he needs. To ensure his sibling(s) are safe from allowing the situation to escalate. Yes, there are times this feels impossible, this weekend being one of them, as Alex felt defenseless, and like a line we weren’t willing to let him cross yet. But in that moment, when we battled our own emotions, we relied on each other to hold ourselves accountable to remember can’t vs won’t.

Because we can be better parents. We can choose to take time to learn more about our son, and everything that he is, not just a diagnosis. We can pay extra attention to his body language, and ensure that when he asks for something, remember that he only asks if he really needs it, so to give it the importance it deserves.

Remember, behavior is communication. Just because someone isn’t using words to speak, doesn’t mean that you can’t hear them, it means you won’t hear them, and are choosing not to. Choose to listen.

5 Things You Can Do To Support Your Friends Who Are Parenting Autism

Someone asked me recently, how to be there for us, or in general, for those parenting autism. After thinking on it, here are 5 things I came up with, that I thought others may find helpful to know.

1.) Just Ask.

If you are parenting neurotypical children, and trying to support a parent of a child(ren) on the spectrum, and simply don’t know, it’s ok to ask. Lead with love and curiosity, and ask to learn what you don’t know. Every child is unique, despite if they are on the spectrum or not, so parenting each child is unique in it’s approach, maintenance, and execution. Every friendship is unique, and I know when friends have asked me about the diagnosis, just sharing the stories of our day-to-day, help them to show up and support our family in ways they wouldn’t know how to otherwise. If you are asking from a place of love and wishing to truly support your friend, chances are they’ll be relieved to be able to be honest with you, and grateful you are willing to meet them where they are comfortable.

2.) Send Caffeine.

Ya’ll, your friend parenting autism is not sleeping. And not in the way that they could possibly survive without caffeine. Whether they drink a pot of coffee black a day, or straight shoot with shots of espresso like I do these days, or maybe they are mad for Matcha- whatever it is, they most likely don’t have hours in the day to take a nap and catch up on the Z’s they lose in the middle of the night. If you’re thinking of your friend, and you want to send something that could help, I promise, for any parent I’ve spoken with who is up with kiddos all night, a free coffee is pretty darn magical. Us east coasters run on Dunkin’, but Starbucks, Peets, whatever your flavor, it can seriously go a long way. Not only does it say, “I’m thinking of you” but it says “I see you, you’ve got this, keep going.” Well, at least that’s what I’m convinced my four cappuccinos tell me every morning… a shot of magic energy in every shot of espresso.

3.) Bring Wine.

Most likely, your friend hasn’t made it out for ladies night in a while. It’s not as easy as you think to get a babysitter, and, from my experience, my guess is staying home for bedtime routines is a requirement. Truth be told, by the time the kiddos are asleep, the parent probably shortly follows to their own bedroom, not knowing how much sleep she is going to get that night. But stopping by with a bottle of wine, leaving all judgement of whatever you are walking into at the door (as most likely you are about to witness a witching hour right before bedtime for the kiddos), and smiles ready to help in anyway needed with clinking glasses as the reward at the end of it- can be the ultimate way for a mom who never gets out, to feel a little less like just a mom, and more like someone who still finds time to spend with her friends- even if the friend is the one bringing the time to her. Having a conversation with another adult about something other than stimming, or triggers, or behavior, with unexpected laughter, while dressed in sweatpants and bra optional (you know you were thinking it), can make a really exhausted care giver feel more like that person you once knew before kids, and just enough of a pick-me up to make any hangover that accompanies the next morning worth it.

4.) Love our babies.

It can take a care giver or teacher months to get a child on the spectrum to pair with them- and that’s with training and understanding to put in the work. But, from what I have seen, for as much work as it takes, it’s pretty simple. Show up, and show up again and again until they know your face.  FaceTime instead of calling. Stop by after work, or for a play date on a Sunday morning. And don’t expect our babies to come to you, be ok with however long it takes for them to pair with you. It needs to fully be on their terms. You need to earn their trust, and their want to spend time with you. Celebrate it when they do. Because they will make you work for it, but it will be incredibly worth it.

And, if you bring kids into the mix with you, make sure you teach them how to show up too. Explain to them that just because our kids might not say “hello” back, or be comfortable running around with noisy chaotic fun, or like to give hugs and loves at the end of a visit, it doesn’t mean they aren’t grateful for the companionship, and that they don’t bring something truly special to the friendship. Encourage they be open to wherever the play date takes them, removing expectations from the mix, providing important opportunity for learning, grace, and simple joy.

5.) Sit with us in the dark.

Brene Brown, Empathy Researcher, says “Empathy is...simply listening, holding space, withholding judgment, emotionally connecting, and communicating that incredibly healing message of, ‘You’re not alone.’” Sometimes, all we need is someone to sit with us during the moments we question what we are doing, fully aware that we are navigating blind in a space without doors or windows. As I’ve said so many times before, Autism is magical, and has a truly beautiful lens that it places on your life as a parent if you let it, showing just how incredible your children are because it navigates, showcases, and highlights your child’s gifts right before your eyes. But parenting, in general, can be hard. And when the “rule book” doesn’t look like all the ones your friends, family, and published strangers look like, it can sometimes make you question every decision you make. I’ve heard Brene explain that to have empathy is to see a friend sitting in a dark room alone, and that your actions are not to rush in and turn a light on, or even walk by, say a quick hello, and leave, but to enter the space quietly, sit beside your friend, maybe even hold their hand, and just be. Just sit with us in the dark, for however long we need you to. Remember, we’re strong, committed parents, who put our children first. We won’t be sitting there long- there is laundry to switch, lunches to pack, pick-ups to arrange, therapy to get to, etc… but if we need a minute, let us know we aren’t alone in it.

The Power of Siblings...

Just the other day, I found myself admitting to another mom that I’m not sure we would have chosen to have more kids had we known of the boys’ diagnosis before getting pregnant. The second the words came out of my mouth I regretted it. But, as much as I regretted it, it was the truth. And that truth breaks my heart because I cannot imagine our life without this little neurotypical nugget. As I continue to work with parents of children on the spectrum, I think this share is important because adding siblings can be such a crucial transition and dynamic for a family, and a particularly different one for families with “differently wired*” children.

Alex at age 15 months.

Alex was our “bow baby”, meaning she tied our family with a bow of completion. When we did IVF for the twins, we were so fortunate to have 11 eggs make it to day 5 of the process. We used the two for the twins, and then were in amazing shape with 9 frozen embryos to consider the future of our family, providing the twins siblings.

When the twins were a year-and-a-half, we felt like we were finally getting some sleep, and ready to try again. We had this SILLY concept that we wanted to get all the “hard” out of the way while it was “still hard” before we forgot what “hard” felt like. YA. I know all the parents and care-givers are laughing at that one. But you don’t know what you don’t know, right?

The first attempt at IVF was successful, but I was traveling for work, working nearly 80 hours in a four-day time period for one of our biggest events, and lost that pregnancy at nine weeks. It was a very hard loss to swallow. I knew it was my fault. I traveled across the country, barely slept, and worked on my feet for an on-godly amount of time during weeks 7 and 8. Not the smartest move on my part, but it was my job and I was “doing what I had to do”. It was a loss, and something that was very different than the 3 years and 11 IUIs that simply never took when trying to have the boys. And it was a loss that many do not talk about, because of the embarrassment, shame, sadness, and feelings of failure tied to it. But oh, the collateral beauty that came from that loss that has forever shaped our lives in such an important domino effect.

A little back story… When we were finally pregnant with the twins, my wife admitted she was curious to know what that “surprise” feels like for spouses (yes, typically the males in the relationship) when the wife gets to surprise them with the news they are about to be parents. I had concocted this plan in my head that for the second pregnancy, I’d surprise her. Now, with IVF, it’s not that easy. Especially as the doctors need legal consent from both parents of the embryos, so she needed to sign documentation, but I knew if we could just “start the process”, I could work out the shots and appointments on my own. I had even convinced our dear friend, Ashlee Rollins, to help me with the surprise. She was excited to be my partner in crime.

But life has different plans. One week Ash and I were secretly planning expanding my family, and the next she was undergoing chemo treatments for a wretched diagnosis of Cancer. During a time I thought I’d be sneaking away for “coffee with Ashlee” to get the implementation of an embryo, I was going to a hospital to hold her hand and listen to a doctor tell her she needed to understand the severity of her diagnosis, as treatment was no longer working, and it was time to accept what was ahead. Within six months of first learning of the diagnosis, we lost our young, vibrant, care-free, dependable, loyal, and irreplaceable friend, only two days after she celebrated her 24th birthday.

After she passed, I gave up thinking I could surprise Steph, knowing Ashlee was irreplaceable in that form of assistance. When I lost the first baby after the twins, I think part of me was just too bitter about everything to believe happiness could come from that pregnancy. That’s a truly wretched thing to say, but it’s the truth. We were heartbroken, and a baby that comes into this world deserves parents with mended hearts, that are full of love and ready to be actively present for their children.

After time, both required in between tries for the pregnancy, but also to where I felt like I could handle trying again, Steph and I went for a second round of IVF. We were truly fortunate, as that one took, and our family would begin to grow. The irony was that this baby’s due date would be June 7… Ashlee’s birthday was June 11, and we lost her on June 13. Yes, I’d be lying if I didn’t admit that part of me prayed the baby would be late, and tied astrologically to our friend in some way, but also knew that the chances of that happening would be so slim.

That’s the thing about destiny though… this incredible little human’s fate was to be born in June, but she intended to be “ready when she was ready”, and couldn’t wait a day longer. Little Miss Alex (Alli) Rollins Young was born to us on June 4, 2018, at 11:59am, weighing in at 9lbs 12oz (girlfriend took ALL the room those twins left behind and then some). And as you can see here… the whole family fell in love with her immediately.

During the first year Alli was with us, it was so interesting to see how each twin took to her. Luca was trepidatious, always preceding with caution. Jack, however, constantly referred to her as “my baby”, was Mommy’s little helper, always grateful for a sibling who wanted this attention. Their bond was heartwarming beyond belief. As soon as Alex could crawl, she’d follow Jack everywhere. She knew to give Luca space, but any time Jack looked for her, she’d rush to be by his side, full of giggles that seem to be endless.

These days we can find Alex and Jack playing hide-and-seek behind the curtains, or racing through the living room chasing each other, their bond continuing to grow with such adoration. Equally, however, they each fight for my attention, as Alli tends to observe all of Jack’s behaviors, repeating any she seems to deem worthy. They snuggle on the couch when they both first wake up, more mornings then I can count, and Alli will work every charming smile she can to snuggle beside him for a book before bed at night. There are days I look at them and think to myself, “oh to be loved like that, how that must feel for each of them.” And for a while, this thought would make my heart smile, and hurt in tandem, as I watched our other child watch the experience happen for his siblings, but not for himself.

Recently, however, Luca has let her play. Even when working his lines, and in his comforting and calm little world, he will allow her in. You’ll see her barrel her way toward him, anxious to see what he is so fixated on. Had she been Jack, looking to play with anything he’s playing with, we would immediately redirect Jack away to something “more exciting”, but with Alex, we let her use her magic as far as Luca will let her, before it upsets him. We know when Luca isn’t interested in her touching, as he’ll yell “buh-bye, see you later!”, or “help”, meaning he’s heartedly focused and cannot allow her disruption. But often, he’ll even let her disrupt his lines, holding back his frustration and the pain it’s causing him, just to be patient with her and let her explore. It’s like he is showing her his love for her, by letting her in his bubble, despite how painful it is for him. (Below is an early morning in the playroom, when Luca was busy forming a line of all his birds, and Alex was determined to insert herself in his world. He allowed her to play with the toys, sit near him, and even take a few birds from those he had sorted out from all the figurines in his mixed box to choose from.)

And then, just a few weeks ago, Luca began to seek her out when she entered a room, to say “Hi!” If he was awake before she was, and I was bringing her down from her crib, he’d rush to the entry gate and make direct eye contact (big deal for us) and yell “HI!!!” waving his hands at her, before turning to go back to whatever he was doing. Every night since it began, when she comes home with Mama from her day at school, he rushes to the garage door with a “Hi, how are you” automatic response, connecting eyes, and then going back to his iPad. He’s even let her lay beside him in bed during story time, a few nights when Jack has fallen asleep before his siblings, and Alex is desperate to hang in her big brothers’ room before going to her room where no other companions sleep. And lately, when we tell Alli to give everyone “love” before nap, he’ll hear the reference, and look for his sister to make sure he’s included in the rounds of kisses and snuggles she intentionally spreads around the room. His arms may not make it around her, but he will allow her to hug him, which in itself is such an area of growth.

This may seem insignificant compared to the clearly connected images you see between Jack and Alli, but this is simply incredible, and what inspired this post about the power of siblings.

Yes, Jack’s smiling face here is during a really fun play time with his sister. They were rolling around the floor laughing and wrestling, having the best time on a random Saturday morning while Luca played with his dinosaurs by himself less than 4 feet away. This pure joy she gives him is something no one else could, and something he was desperately wishing for from Luca. He has someone who is looking up to him, following his lead, naturally letting him help her and love her and need her for the rest of his life. She hugs him regularly, and gives him kisses every night before bed. She squeals elatedly when he enters a room unexpectedly, looking just for her. Their love for one another is like two pieces to a puzzle that could not function without another. It’s truly adorable.

The thing that I think, however, is that Luca is smiling too. Maybe he won’t pose for a photo in the moment. Maybe he won’t wrestle her, or cuddle her on the couch, or even give her the kisses that Jack so sweetly will when she’s fallen and hurt herself. But Luca, looking for eye contact, wanting to greet her when she enters a room, that to me is his heart smiling. She’s pulling out his need to be needed by her, and his want to be important to her. While he played with his dinosaurs only 4 feet from his siblings, he was singing the sweetest song. He played so contently, that the noise of the two playing without him did not seem to phase him (keep in mind it normally would).

Naturally an introvert, as his parents we often try to not bother him, but what we’ve seen lately around his work to be present around her, makes us realize that maybe he doesn’t actually want to be an introvert. Maybe he just needs to practice the interaction to determine if he likes/wants/needs it. His teachers have noticed that he’s even begun to demonstrate a similar behavior with classmates. Looking to comfort a friend when they are in pain, make eye contact with a warm greeting when he sees them, and even play with particularly chosen mates on the playground each day at recess. Something has awakened inside of him where he wants to be noticed, and isn’t afraid to be known. I think this has stemmed from the little girl who is slowly stealing his heart, because she isn’t going anywhere, and he was forced to fall-in love with her fearless need to simply be part of his world.

One key thing that our kids have taught me this year, watching them accept/approve and enjoy their siblings, that is there is a special power being brought into this world with other humans who are allowed to love you before they know any better - during all your innocence and learning. Yes, all relationships are different, and require effort, a give-and-take, and real work. But the sibling relationship, in my opinion, is how you learn how to be something to someone. They aren’t your parent, or an adult/elder/teacher/babysitter that requires your attention, respect, and obedience. They are your equal, your friend, your fellow “little”. They are whatever you let them to be. And like all great relationships, yes, some people are in your life simply for what you need them to be in that moment, but some people become those who define who you were, who you are, and who you will become.

Luca might be learning from Alex, things he was never willing or open to learn from Jack, but Alex will learn things from Luca that she could never learn from Jack as well. She’ll learn things from both of her brothers about the power of kindness, patience, understanding and respecting diversity, and loyalty. The life lessons they will each learn from each other they would not be able to learn in such magnitude from anyone else.

It’s true, what I admitted, that I’m not sure we would have had more kids had we known about the diagnosis prior to getting pregnant, because as parents we are beyond committed to our children, and littles are a stretch of emotional/intellectual/physical/financial means to raise as it begins with. But I could not be more grateful for the timing of our family bow, because I cannot imagine our life without her in it. If you’re parenting autism and questioning how siblings may feed new/additional challenges into the mix, or even just wondering if your neurotypical children who are so easy as a singleton would benefit from having a sibling, my only advice is to listen to your heart and let fate do it’s thing. Even on our hardest days juggling all three kids under the age of five, I still wouldn’t trade it for the world.

*Differently Wired: Taken from the INCREDIBLE Deborah Reder, author of “Differently Wired: Raising an Exceptional Child in a Conventional World”, is my favorite phrasing for the concept that our kids are part of “the one in five "differently wired" children with ADHD, dyslexia, giftedness, autism, anxiety, or other neurodifferences”. If you haven’t read it, and are raising a differently wired child, I highly suggest it! https://www.amazon.com/Differently-Wired-Aspergers-Giftedness-Disabilities/dp/1523506318/ref=sr_1_2?hvadid=78202832398504&hvbmt=be&hvdev=c&hvqmt=e&keywords=differently+wired&qid=1580762296&sr=8-2

PS: I’d be remiss to not share that I am the older sister to three of the most talented, driven, unique, and incredible human beings I could ever know. Each is extremely different, but ridiculously similar. They’ve shaped my past, defining every moment of my childhood in a way no other could; they are a pulse on my present, particularly in how I look to parent my children as I see their faces, demeanors, and characteristics in each of my children; and they will be a compass on my future, always keeping me on track but inspiring me and pushing me to move forward at all times.

Today, I'm tired. But not too tired, to love unconditionally.

Today, I am tired.

Today I am more tired than usual.

I made the mistake of having one too many glasses of wine earlier this week at an important work dinner with my wife, and I am still feeling the weight of it three days later.

That night we went out, we had our old nanny over to watch them sleep while we went out to dinner. We stuck to our routine because without it, they would be lost. No one would sleep. The disruption could set them off for a full week. That’s a full week of patience, and understanding, and grace that I don’t know I could muster this week as we worked to reset them.

But this was a big night for my wife. The kind of night she waits a decade of hard work, hard physical labor, and long late evenings of extra work after those long days of physical labor, to get to. This was the biggest kind of work night she has had since we have met. So for that, you interrupt routine, at all costs.

We made a late dinner reservation, asking two of her employees to meet us for a later evening than they most likely wished to do on a Monday night. We went through the normal bedtime routine with the kids but pushed in 25 minutes earlier than we usually do. Our old nanny was helping, and although they adore her, it’s different. It’s a blip of difference which can be just enough to cause concern, or throw them off. But they did great, and we got them to bed, and headed out to dinner.

We got home after a really fantastic night, and made it to sleep around 3 hours later than I normally catch shut eye. I could have guessed Jack would sleep walk that night. I almost kicked myself for not staying up just a little longer so I could catch him and put him back to bed.

I was asleep for 20 minutes when I heard the loud thud if his feet as he walked to our room. My body knew to kick into action despite my exhaustion, and I worked quickly to get him back to bed with as little disturbance as possible.

He did this 2 more times that night.

Jack suffers from sleep apnea, and has since he was two years-old, just after we learned about the diagnosis and everything that comes with it. We tried everything to help him sleep through the night, and even had him lined up for a sleep study with a neurologist - but thinking about how taking my three year old autistic son who is scared of even thinking about going to the doctor, to stay in a hotel room, hooked up to all sorts of wires and deal with being observed all night - made me anxious beyond belief. So, when Jack sleepwalks, he walks past our windy staircase, and into our room to my side of the bed. His eyes are shut, and he is merely moving while asleep.

I can say from experience that he doesn’t remember any of it, because I slept walk for a very long time as a kid. For me, it usually happened when I was stressed or anxious. It breaks my heart to think that my little boy is so stressed or anxious that he’s sleep walking on a nightly basis. But the most important part of being there for someone who is sleep walking is to not disturb them, so I think I’ve trained myself to sleep while on alert for over two years now, which means my body never really rests.

What’s difficult about when Jack sleep walks so many times in one night, is that it becomes a pattern he has trouble undoing. It’s almost as if it gets worst unless you provide routine to remind him it’s ok. With Jack, it’s like his “lines” are emotional lines… emotional repetition of pictures that make him feel safe and secure, in the comparable way to that Luca or your typical autistic child has to line up their toys to sooth themselves. Hard to explain, yet completely the only way that makes sense in my head.

The next morning I medicated with too many cappuccinos. Pushed through the day until we made it to bed time, and the kids got to reset again. We made sure to keep bedtime routine calm, and positive, and very nonchalant, not over stressing that we were paying attention to trying to get the routine right.

But Jack slept walk 2 more times that night. Which meant my body reacted to alert wake-up interruptions two more times… simply because we broke routine earlier in the week.

And then last night, after another intentionally routinely evening, we finally began to reset Jack, and he only slept walk once.

So today, after a long running stretch of no sleep this week, as I near the end of the work week and look towards Friday, a video came across my social media feed that was exactly what I needed to hear. A fellow autistic parent acknowledge a time that was nearly impossible to push through, and the grace she found in the nearly impossible.

When I’m tired, this kind of tired, I start to wonder if it will always be like this. I should not be complaining, as the weeks when Luca is off in the middle of the night, he will wake up and be in capable of going back to sleep for a minimum of three hours, typically causing me to be up from 1am - 4am, if not later, before I can reset him for a nap before school, so there have definitely been harder weeks of exhaustion that I’ve survived. But when I’m tired, I’m not at my best. And there are days, where I’m worst than not just at my best. There are days that I question if this will always be my life. If my body will actually ever be able to rest again. If my wife and I will ever be able to just leave our children with a sitter, whether it be family member or hired help, and relax for a few hours, not worrying about what kind of repercussions interrupting the kids routine will create.

But then I think about what Jenn Jordan said in this video that brought me to tears.

She said that a time that she felt at her worst, she turned into an invitation.. an invitation to love unconditionally- meaning WITHOUT CONDITION. As a parent, how can I hold it against my child that he’s so anxious that he sleeps unsettled each night, despite that it means today I’m tired, and so tired that I’m not at my best? Oh, how grateful I am, to have gotten this invitation today, when I needed it most.

It’s a really fantastic talk. If you have a moment, feel free to watch. She’s simply lovely.

So when we put the boys to bed tonight, we were extra patient, extra playful, and extra present. We tried harder than we normal do. We used quiet and calm voices, and didn’t rush trying to get the kids to sleep so that we could go to sleep.

Jack was the last to fall asleep, and in his typical fashion, he asked Mama (Steph) to read to him, and for Mommy (me) to cuddle him, as he likes to hold my hand while he falls asleep. After he finally let his eyes rest, and his breathing became steady, Steph and I looked at each other, tearful, smiling, while we took the moment to be present in how awesome he was, and how blessed we were for moments like that.

My advice to other parents out there, working to be the best they can for their kids, is to take every invitation you are given to give that love without condition. And like this incredible woman I’ve just discovered, Jenn Jordan, be willing to laugh when it’s hard, be real when it feels impossible, find grace in the moments it takes to push through, and then - keep doing it, over and over again.