Confessions of Autism

I have a confession to make.

Today was the first time that I told our son he had autism.

He is 7, going on what feels like 18, but will be 8 this summer.

I can’t say it hasn’t come up before. 

And I must say that the reason I haven’t told him before is not because I am ashamed or afraid of the label.

Truth is… knowing about autism was a game changer for us… and in many ways, saved my life as a mother. 

Being told about the neurowiring was the life raft I needed when I didn’t even realize I had just found myself out at sea with no concept of where any land might be found, treading water…

And despite studying communication for nearly two decades, with many years on stage, learning scripts or speaking freely in front of large crowds… something about that conversation I just haven’t been able to have.

At least not with Jack.

I think I could have had it with Luca at any point, and he would have just taken the information for what it was, and kept on going. 

I’m sure some may be quick to assume that is because of Luca’s communication deficit, but that’s where you’d be strongly mistaken.

Our Luca understands so much more than this world gives him credit for. As he continues to find his words with great strides every day, never once have I ever doubted the information he is able to take in, process, understand, and store as needed. 

If I were to say to Luca, “Luca, my love, did you know you were autistic?” I’m sure his gorgeous wide eyes would look up curiously, awaiting an explanation. Almost like an index card with a word on the front, definition on the back, ready to black-and-white understand that words have meanings, they are what they are, and no emotion tied to the facts.

But for Jack… even as I type I tear up and feel my chest tighten… for Jack, my fear is that he’s going to feel every bit of what society has wrongly done to the label… that he will pick up on the “difference” associated with the word, but worst… the “less than”.

This label that set me free, not only as an adult, but as a child who grew up wondering what was wrong with her… doing everything I could to mask, perform, be what everyone else needed… when I learned about autism, and really got to know it- for all it’s incredible magic and beauty in the difference of it… I felt freedom and relief beyond words.

Because yes, there is power into being one’s true self, and authenticity in being who the world made you to be without restraint… but this world can be mean and cruel and judgemental. And for the way that Jack is wired, in such a similar way that I know myself to be, I just wasn’t ready to go there. 

And then, we found ourselves this morning, talking about how it was Autism Awareness week at school… and that he got to wear a crazy hat or crazy hair to celebrate how we are all wired differently… and as we brainstormed back in forth while we stood in the kitchen in our pjs… I blurted out… “J, do you know what autism is?”

Those moments… the ones you think you can practice poetically in your head where you’ll say just the right thing and it’ll be something that saves your child when he needs it most… this was supposed to be one of those moments…. And I have to confess, I may have tanked it…

His body got still and he replied “No?”, watching me for an answer.

I put down the lunches I was working on to face him, and got down to his level, took a deep breath and reached for the only thing I could to get myself out of the conversation… “It just means your brain is wired differently… like you think about things differently… the way you see the world is different from some of your friends.”

I watched him process, and start to nod as he understood. So I continued…

“Jack, did you know you have autism?”

As I said it, I immediately wished I could take it back. Not because I didn’t want him to know… but I felt like I threw myself on stage in front of 100 people without knowing my lines, and a showrunner MIA by the curtain to save me.

“I do?” He asked.

“You do,” I continued. “And so does Luca, and Alex, and Mommy. We all think differently. We like different things. We see situations differently.” He started to walk when he does when he needs space to think, and as I watched him begin to circle the island, he said, “so like, how I go to Speech, but my friends don’t?”

PHEW. I began to breathe again thinking- ah ha! My stagerunner! Saving the day!

“Yes, exactly. But it’s not just about knowing the words to say, right?” He stopped walking, so I continued… “You know how Ms. Jen has those awesome thought bubbles that are different colors that she holds up while you work?” He nodded. “Well, what does it mean when she holds up a green one?”

He answered with a smile, “She likes what I”m doing.”

I nodded assuringly, “Right, exactly… and what color does she hold up when she feels uncomfortable about your choice?” He thought for a minute and said, “Red or blue?” 

I went with it because for the life of me I couldn’t remember.

“Right, buddy. See, some friends don’t need Ms. Jen to hold up the thought bubbles because they just know… they already know how to read someone’s face or body language to know if who they are with likes what they are doing or not. Does that make sense?”

He nodded and was seemingly on board, and then he started walking around the island again.

“Ok, so we are wired differently like a plug in an outlet?” 

I kicked myself at not just being straight with him… everything is so black and white, but I hoped this one time the analogy could click.

“Yep, in our brain are all these neurowires that connect us to how we understand people, things we like, what makes us happy, and what makes us sad.”

He stopped walking.

“Oh….” he smiled, “like how I like Sonic?” 

BINGO.

“Yes, bud. But do you just like Sonic? Or do you like really really really like Sonic?”

“I really really really like Sonic. Like forever.” Right about here is where the ADHD kicks the conversation to a quick close as he looks at me directly and says “but Mom, what am I going to wear for a hat?”

I laughed and he went down to the basement to hunt for options while I went back to making lunches.

I have no idea what I sent him off to school today thinking.

I really can’t prepare him for what his classmates might say as they as their amazing teacher tries to navigate the conversation at an age appropriate level.

I couldn’t stop wondering what he will do, as I ran my miles on the tread this morning, when the teacher explains today that friends in class have autism…

He may stand up proudly and say “I have autism.” And repeat word for word what I told him today… in our kitchen… in our pajamas as I made him the same lunch I’ve made him every day since he started first grade… making his friends laugh as I’m sure he’ll finish whatever he says with a dance move and a bow. 

And who knows… maybe if he does, it’ll give his classmates another example of what autism can look like, one that isn’t just what society has shown it to be for decades, because it will give young minds examples of what a spectrum looks like and how different can be amazing and unique and teach us so much…

But maybe he’ll stay quiet and watch to see what his classmates think.. Before he feels comfortable to say anything… letting his peers in that moment dictate what he is going to think about himself.

Because there is that human instinct when we are scared that gives us the three choices we know so well with autism… fight… flight… or freeze.

My Jack… he isn’t a fighter… he’s like his mom… he’s a people pleaser… someone who finds worth in being needed and wanted and approved of. 

His go to, when he doesn't know what to do is to freeze. 

He can be brilliant, and funny, and charming, and just melt your heart with the most authentic notions of a dreamer…

But he can forget his worth when he isn’t performing… and his assumption when met with shame or disappointment is that he is unworthy.

It’s just part of his wiring.

So when he comes home today, I’ll make sure there is space for him to talk about it, and to reinforce the scripts he needs to hear of his worthiness in all of his amazing magic… using real situations he can ground himself in to remind himself in the moments he feels less than.

And hope to the heavens that class clown made everyone smile today, and learn through his story, with an open mind and open heart… because he is adored by his classmates… and if I’ve learned anything in this lifetime it’s that story sharing can be what changes hearts and minds and rewrite what it is we all know to be true.

As you talk to your kids this month about Autism, as it is the month of Autism Acceptance… I hope our journey and story help you in some way… 

I know it’s been a while since I’ve shared… as a few pieces I wrote made me second guess myself a bit… but where there have been so many who have reached out throughout the years, I know it’s important to keep sharing… 

So if you are reading and this helps in some way… know I see you. And here to return the favor anytime you need the confessional.

Thanks for being here. xo

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.

2022: Not Just "Twinning" With Autism

I’m often asked, how one knows if they or their child is autistic?

It’s been the question at the top of my own mind for the last 13 months. A fixation, if I confess fully, that had me so caught up that it left me speechless until I could find the answers. And now that I’ve found some, here is what I know.

The DSM-5 categorizes autism as:

Autism spectrum disorder (ASD) is a developmental disability  that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.

In my experience, having now gone through 5 evaluations (one for each of the twins, two for Alex, and one personally), the one outlying factor that places a human on the autism spectrum is the inability to connect with others. Yes, as mentioned above, there is always a communication deficit (typically a speech delay), and some evident need for self-stimulation or lack of ability to self-regulate, but the most commonly noted is the lack of connection.

However, what seems to be consistently ignored in the last decade, is that prior to 2013- when Asperger Syndrome” diagnosis was eliminated from the American Psychiatric Association’s Diagnostic Manual of Mental Disorders, 5th Edition (DSM-V), one of the differentiators between Aspergers, otherwise known as High-Functioning Autism, and Autism (what was considered to be lower-functioning autism), was that those on the Asperger’s end of the spectrum lived for connection with others. Where their wiring was criss-crossed was their ability to interpret connection with accuracy. Now that the diagnosis of one having Autism Spectrum Disorder is all inclusive, that lack of wanting or ability to connect seems to be confused for all who fall into the category, where once was a indicator otherwise.

As I’ve clarified in the past, I have no medical education that makes me any sort of expert on this subject, but have been living with it “officially” for the last five years, so I’m simply sharing our experiences in case it can help others. Here is how I can best explain the difference in the two ends of the spectrum.

Our twins, who have been diagnosed since 18 months, couldn't be more opposite. Yes, in their looks, in their likes, in their personalities - all of it. Very little do they seem to have in common.

This is also true for their autism.

Where Luca falls on the lower end of the spectrum, otherwise known as a category: 3 for (Autism), Jack falls on what used to be known as Aspergers, but now is diagnosed as a Category: 1 (High Functioning Autism).

(If you want to learn about the 5 categories quickly, I find these definitions to be most helpful.)

I have to state for the record that I simply despise the nomenclature this diagnosis goes by because our boys are equal. They came into this world together, only minutes apart, and each is capable of exactly the same thing. Yes, their challenges are different, but all humans are challenged whether or not they admit it. What the diagnosis has given us is more of a map to understand how they are wired, and do our best as their parents to communicate with them in the ways that they learn best, and hopefully support them in the areas they struggle. Outside of opening up our family for support from the medical and academic communities, which we have learned we truly need and our children greatly benefit from, having a diagnosis listed on their medical chart changes nothing about who they are as individuals. The work they do every day; that we do with them; that is what changes what their lives could be tomorrow, and each day forward.

When the twins were evaluated, their team was looking for the following signs (taken from Autism Society’s website):

• Speaks later than typical or not at all (nonverbal)

• Repetition in language or movement, such as repeating the same word or sounds, hand flapping, or any repeated movement 

• Atypical nonverbal communication, including avoiding eye contact, giving few facial expressions, or having a monotone

• Prefers solitary or parallel play rather than engaging in associative or cooperative play with other children

• Extremely distressed by changes, including new foods or changes in schedule

• Preference for predictable, structured play over spontaneous or make-believe play 

• Strong, persistent interest on specific topic, part of a toy, or item

This list, for our twins, is literally split down the middle.

Although both boys were significantly behind in speech (which again, we thought was due to being twin boys, and maybe they just had their own language that they spoke to each other), the rest of the list is split perfectly down the middle between them.

For Luca, he was our hand flapper, our spinner, our one who never stopped moving. He would rock in his high-chair to soothe himself through the heart-burn that he took medication for until he was just over a year old. When something was too loud for him, or felt like sensory overload, you could see him move his body back and forth to calm himself down, almost as if it was focused on the movement to distract him from distress. To this day he will still find the border of a room and walk it with insistency, and even occasionally flap his hands when he is incredibly overwhelmed.

There were months when we thought perhaps Luca was deaf in an ear and just couldn’t tell us, as he wouldn’t always look to you when you’d call his name. Each time we’d think it was time to go to audiology, he’d sing the tone of a song so on pitch you thought it would be impossible that he was deaf. It wasn’t until he went for tubes in February of 2018 that we learned his tubes were so blocked that he was in fact nearly deaf in one ear, and not only did he have tubes placed, but we began working with audiology to ensure he took antihistamines anytime his allergies could be bothering him, as when his allergies clogged his nasal cavities, it also blocked his ears. 

Although the hearing question had been answered, we still found that we had to call his name multiple times before he would lock eyes with us to confirm we had his attention. Even then, getting a facial reaction from him took extra effort, and usually a sing-song voice to light up his eyes and show his dufrene markers. *But, when you did, man could that boy’s smile light up a room (and still does - every time)! 

And when our pediatrician had told us during the earliest visits of having newborns that we’d find one of the twins would be the “easy” one, we assumed that Luca’s preference to play by himself for hours with preferred toys just gave him that title. As the evaluations began to look at autism, I remember saying to them, “please don’t touch our easy one, he’s our hippy, he’s so easy please, he just beats to the beat of his own drum.”

For Jack, it was the resistance to any sort of change, or interruption in routine that was a clear identifier. The struggles we would have in needing to get him into the car on an errand that just “came up” felt impossible for him. Not to mention that we should have bought stock in Lays Sour Cream and Cheddar Ruffle Chips and White Cheezits because they are the two foods our boy has eaten with every meal since he was able to tell us what he wanted to eat. Yes, we’ve added a few other foods to the list, but his diet is limited and particularly specific.

Jack had, and still has, a very hard time with spontaneous or make-believe play, which is often hard for outsiders to believe, because his imagination is impressive. He is a natural born storyteller, who can perform with great animation. He cannot however, play on his own, or with a peer, without understanding the rules or what is expected of him. (And please note that I say cannot, not will not, as they are two very different things.) His heart suffers in frustration and embarrassment when put in a “play” situation where someone isn’t dictating to him how the game must go, or introducing to him how he wishes to play. Where Luca can take a preferred object and play for hours by himself, lost in a world that only he is in, Jack simply stares at a blank slate. However, when given a script, he can feel every emotion needed in the imaginative play, and fully-take on the character he needs to be to successfully be part of the game.

Lastly, although yes, Luca has his preferred items that have stayed consistent in terms of interest: Penguins, Animals, Birds, Disney Cars, etc… Jack fixates on characters. He becomes amazed by the unique story each has, and learns everything he can about them so he can truly know them. I’ve learned that the characters he chooses, tend to represent tortured souls with some kind of multiple personality. Early on it was Sonic the WEREHOG, not the hedgehog, who is the version Sonic turns into that is incredibly strong and angry and wild when the moon comes out (like that of a werewolf), but is Sonic during the day - the happy-go-lucky people pleasing hedgehog who is friends with everyone. (Sound familiar?)  

The thing is… according to Autism Society’s definition on Aspergers… Jack’s diagnosis may have been missed had he not had a speech delay, because what I’ve learned in each evaluation is if the child doesn’t stimm (flap their hands, rock their body, etc.), and can make eye contact with a desire to engage with others, then the evaluators don’t worry about the rest. I believe it’s because the number of cases of Autism has nearly tripled over the last three decades, and early intervention is there to help with the potentially academically delayed children on the “lower functioning” end of the spectrum, like our Luca. Which I guess is understandable, because if you only have so many qualified team members in a school system to assist children with a diagnosis, then you have to do your best to not overload them with those who may be able to help themselves over the years.

Here’s Autism Society’s explanation of the differences between Autism and Aspergers: 

“What distinguishes Asperger’s Disorder from classic autism are its less severe symptoms and the absence of language delays. Children with Asperger’s Disorder may be only mildly affected, and they frequently have good language and cognitive skills. To the untrained observer, a child with Asperger’s Disorder may just seem like a neurotypical child behaving differently.

Children with autism are frequently viewed as aloof and uninterested in others. This is not the case with Asperger’s Disorder. Individuals with Asperger’s Disorder usually want to fit in and have interaction with others, but often they don’t know how to do it. They may be socially awkward, not understand conventional social rules or show a lack of empathy. They may have limited eye contact, seem unengaged in a conversation and not understand the use of gestures or sarcasm.

Their interests in a particular subject may border on the obsessive. Children with Asperger’s Disorder often like to collect categories of things, such as rocks or bottle caps. They may be proficient in knowledge categories of information, such as baseball statistics or Latin names of flowers. They may have good rote memory skills but struggle with abstract concepts.

One of the major differences between Asperger’s Disorder and autism is that, by definition, there is no speech delay in Asperger’s. In fact, children with Asperger’s Disorder frequently have good language skills; they simply use language in different ways. Speech patterns may be unusual, lack inflection or have a rhythmic nature, or may be formal, but too loud or high-pitched. Children with Asperger’s Disorder may not understand the subtleties of language, such as irony and humor, or they may not understand the give-and-take nature of a conversation.

Another distinction between Asperger’s Disorder and autism concerns cognitive ability. While some individuals with autism have intellectual disabilities, by definition, a person with Asperger’s Disorder cannot have a “clinically significant” cognitive delay, and most possess average to above-average intelligence.

While motor difficulties are not a specific criterion for Asperger’s, children with Asperger’s Disorder frequently have motor skill delays and may appear clumsy or awkward.”

Two years ago, as I started 2020, my wife encouraged me to start a blog. Knowing it would be therapeutic as we navigated raising twins on the spectrum, she gave me permission to share with authenticity, only ever monitoring what I shared on our family’s behalf if she worried it would put the twins at any risk, and so I wrote what I saw each day. 

Some blogs resonated for others enough that they reached out to say they were seeing it in their children, and it even helped with scheduling an evaluation or two that did in fact find autism, and those children are getting early intervention that I know will be life changing for their family. 

Some blogs helped me share through my hurt, sobbing as I wrote them, and then receiving love and support from others as I needed it.

Some blogs were funny, as even I laughed at what felt unbelievable as it happened (particularly through the ridiculousness of COVID).

And some blogs shared too much, altering others’ opinions of our family, our parenting, and our vulnerability in sharing our life so publicly. 

In 2021, although I was writing many late nights, for hours when heaven knows I should have been sleeping because I haven’t gotten even 6 hours of sleep in the last six years, I wasn’t sharing at all because I was stuck.. Stuck in a writer’s block where I didn’t know what to say or how to say it about everything we were going through. 

I was stuck on what I thought I knew would change others’ opinions of me, and my parenting, in a way that I wasn’t ready for.

I was stuck because anytime you label something, regardless of how the boys diagnosis didn’t change who they are as humans, but did give us a map to understand how they learned, and how we could support them through that learning, it did and continues to change others opinions of the humans they are when they hear they are autistic. 

I was stuck because I had felt like I had spent my whole life trying to be what everyone else needed me to be, and was facing an authenticity that I wasn’t sure I knew how to defend yet. This wasn’t like coming out of a closet refusing to live a life without the love I wanted and felt I deserved, which as everyone in the LGBTQ community can understand in one form or another.

I was stuck because I knew that what I was seeing in our daughter, who is the most beautiful combination of our boys, was a mirror that I recognized with such clarity I could no longer ignore it. If anything, it was finally a reflection that seemed more recognizable than it had in a very long time.

And so as I began to work to have Alex evaluated, and researched the ways autism (which now includes those high function once known as aspergers) in girls, I felt a protective-writers block that told me this story wasn’t ready to be shared, as the world today tends to refuse to listen without those official labels we all give far too much weight to, and what I was seeing in our daughter, I knew too well in myself.

But today, as the ink is dry on the paper, and the label is officially diagnosed, my fingers find the keyboard again, and it’s like the quicksand has disappeared where I am no longer stuck.

2022 for this blog will share the stories about
what Autism has taught me, and what I hope to teach Autism. 

Although Alex’s diagnosis of Category 1 (Aspergers), like Jack’s, would have typically gone unnoticed, we fought diligently for our girl’s magic to be seen in order to give her the best chance at learning any and all strategies in early intervention that can give her has much success navigating what society requires of her in this lifetime. And although I went through the same evaluation, to where it was found (somewhat controversially), that I am not on the spectrum as I am far to engaging (able to connect) to be there, I’m hoping what strategies I’ve learned over the last three decades may help others in ways that aren’t academically being taught. 

So if you’re along for a read or two this year, thank you. Thank you for the time you take to be with us as I share our adventures with autism.

And if what I have shared with you isn’t something you want to continue to read, no offense taken. I thank you in advance for taking any judgment or negativity you have elsewhere, as this space is only for those along for the ride who choose to spread love, support, and an openness to learn. The only way we can change hearts and minds in this lifetime is to share what we know, and this is simply what I know. 

As always, to the others on this spectrum of a journey… we see you, and you are not alone. Xo

Embrace The Suck & Keep Perspective

This post… this post is for the future parents, the maybe parents and the hopeful parents.

This part right here is talking to the parents working on first children, or more children, and god bless you, multiple children.

This post is to give volume to the voice of frustration, the voice of patience, the voice of sadness and defeat that these parents I’m referring to keep muted for fear of judgement and lack of understanding.

This post will talk about our voices, both Steph’s and my own, that were given life during our own challenges at forming our family.  

I can remember sitting in the Doctor’s office for our informational visit as we started the process. The doctor encouraged us to  sign up for counseling before starting actually trying to get pregnant. The audacity she had, I thought. We didn’t need counseling. The only thing working against us was the anatomy required to make it happen, so we needed to turn to science. Pretty black and white if you asked us. I also remember Steph squeezing my hand with matched confidence as she clarified that we would not be seeking professional help during this process and would gladly sign the waiver that marked that as an unnecessary requirement.

My loves, I smile as I remember how confident we were. I smile because we were doe-eyed innocent bunnies thinking for us it would be different. We had close friends who invested years and savings and nearly broke their bank and emotional backs to start their family, who had encouraged us to stay aware and realistic throughout the process. Steph and I had smiled and graciously thanked them for their advice, but had secretly believed it would be easier for us. We figured it might take one or two IUI’s, maybe three if we couldn’t get the timing right.

Oh such innocent bunnies. Ya’ll, it took ELEVEN IUI’s over 3 years, and eventually one round of fully self-funded IVF. We invested over $60,000 when all was said and done for the twins. If you had asked us at that first doctor’s appointment to take an educated guess as to how much we thought we’d spend, we would have told you less than $10,000 because by no means would we ever think we’d be able to spend what we did. And we would have cockily told you that we’d be pregnant within the year, planning the arrival of our bundle(s) of joy that spring. 

Life, as we have learned, does not work that way. But if you are like us, you’ve either tackled that challenge, are currently fighting an uphill battle, or are an innocent bunny yourself looking for a healthy dose of the potential reality you may face. Regardless of your age and stage in working to create your family, the authentic challenge faced by couples who don’t sneeze and get pregnant brings with emotion and exhaustion unlike any other. 

By our fourth or fifth IUI, the process began to take a toll on us. Mistake #1: We had told any and everyone when we started trying to get pregnant. I mean EVERYONE. Why we thought this was smart, I still do not know. Maybe it’s the excitement, maybe it’s the possibility, maybe it’s that never-ending need to be a part of something bigger? Either way, this compounded the level of disappointment we felt after each failed attempt. It went from something we could have dealt with together, intimately and quietly, to something we had to deal with in public, with everyone, and  all at once, I should add. It’s not like you could have a party to announce each time that it didn’t work. Typically people paid attention to timing, so the day I’d get my period, or at least the 48-hour window, would be filled with texts/emails/calls inquiring the results. Each time I had to relive our own disappointment, while disappointing my friends and family. Talk about exhausting! By the third try, we learned how to tell people we’d let them know when something good happened, but to not ask. Then, as we approached the attempts where even drugs weren’t helping, and despite our partnership in managing the daily shots and injections, we started to face frustration.

For me, I felt like a failure. What was wrong with me…. why wasn’t it working? Was I too stressed? Did I not leave my legs in the air long enough after the procedure? Had my stint at smoking 7 years prior affected my ability to conceive now? Were the jeans I was wearing that day too tight? Should I have never used tampons? Ridiculous, yes, but these were the things I continued to question, inevitably ending with: Would I ever get pregnant? 

For Steph, she felt even less in control. The questions she started asking herself were around if she had picked the right donor, as I let her control that part of the process. She would start to wonder if we were actually ready for kids, and if this was the right path to take for our relationship. She started to feel resentful and feared that my attention on a child (or children in our case) would take away from my attention to her - something she started to wonder if she was actually ok with. Feeling helplessand her lack of participation began to consume her to a point where mean things would be said, and the readiness to quit became frequent. 

Remember that suggestion for counseling the doctor mentioned? Around this point would have been an intelligent pivot for us, yet we continued to move forward depleting our savings, increasing the drugs, changing the donors, and researching any complimentary tactics we could try in the hopes something - anything - would get us pregnant. After six tries, we realized that maybe I should switch jobs, because Massachusetts insurance would cover IVF at that point, where New Hampshire insurance did not, but the right job didn’t come to fruition, so we just kept moving forward. 

Mind you, any others seemed to have no trouble conceiving. Perhaps, before I start my bitter soap-box monologue, we should pause and discuss just how hard it is to get pregnant. Loves, it is REALLY hard to get pregnant. Even when all the biological stars align, you literally have less than 72 hours a month where making a baby is even possible. And then once the insemination happens, you have another 48 hours for it to take and form. This small window is what makes it so incredibly frustrating when someone you know seems to sneeze and get pregnant. Or worse, come to you complaining that they didn’t mean to get pregnant - “it just happened.”

Jumping on the soap-box, the following killed me as we worked through our seventh, eighth, and ninth IUI. My younger cousin who was dating a lovely women who already had three children ages 6+, who had gotten pregnant around the time we had first started… announced she was pregnant - AGAIN. No lie. I mean, genuinely, we were happy for them (because he is one of my favorites and she is awesome), but are you KIDDING ME? Here she was, in her forties, welcoming her FIFTH child into the world, where I was healthy and in my early thirties without any identified challenges to having a baby, and she had two pregnancys in the time we invested trying to have our first. 

The literal icing on the cake came when two of our very best friends came over for a typical birthday celebration. As my friend  blew out her candles she said “I wish to tell you - we’re pregnant!” Thank the lord that the lights were off while we were singing, so  no one could see the tears that streamed down my cheeks. Her pregnancy, despite our exhilaration for them, was the hardest to swallow. As part of our daily lives, we were there for every moment she experienced being pregnant for the first time. While her first trimester gave her such nausea it felt like it was all she talked about, I found myself either excusing myself from conversations, or not picking up the phone, for fear that eventually I would yell at her saying “Don’t you know how badly I want to be throwing up!” 

You see, the thing is, when you are in it, it’s really hard to have perspective. It’s truly tremendously hard to tell yourself that you don’t want just any pregnancy. It’s nearly impossible to tell yourself that “everything happens for a reason” and that the universe will bring you “your baby”. But ya’ll, after our eleventh IUI, Steph and I couldn’t even muster the “fake it til you make it” mentality. We were spent - emotionally, physically, and financially. We saw the three year journey as a complete waste. We looked at the division that had begun to take place between us, bitterly and resentfully as we started on the journey expecting it would bring us closer together, not further apart. We looked at the savings we depleted as the romantic trips to isolated beaches where fruity drinks are enjoyed with umbrella straws that we never took; or the basement that was unfinished; or the kitchen remodel that could never happen. We looked at the toll on our faith and belief that we could be parents three years took, and genuinely thought about giving up.

But then, something happened. As I mentioned, one option we had begun to consider was my career moving back to Massachusetts to take advantage of better health insurance options. In this search, a friend who owned an elearning firm proposed I consider working for her. This, my loves, was a moment of divine intervention. Although the job did not offer better health insurance, and Steph and I would still have to consider continuing to pay out of pocket, it did offer the ability to work from home, a far less stressful environment, and a signing bonus. That said signing bonus, combined with the vacation payout from the job I was leaving, was just enough to cover a round of IVF. Call it divine intervention, call it a silver lining, call it whatever you want. This, for us, was the turning moment in time where our family formation became possible.

I must take a moment to clearly state that this is not my endorsement that IVF is the only way to go, or the best solution in forming your family. This was merely the journey our family took in that process that ended in the inevitable. What I will say is that the endurance, patience, discovery and strength we gained in our three year journey to get to that place was merely the groundwork of what we would need to actually begin surviving for us on this parenting journey. 

You see, as I mentioned, Steph and I were innocent bunnies, thinking the journey to parenthood would be easy. We assumed that because we were madly in love, had done everything right with dating for three years, a two year engagement, and a big wedding celebration followed by a year of enjoying the honeymoon phase, that we deserved to be parents. How entitled is that sentiment? The concept of deserving to be parents is a privilege too many people take for granted, and one that we thought we would be able to as well. 

What we didn’t realize at the start of the journey was simply - we weren’t ready.

Let me repeat.

We. Weren’t. Ready.

Did we think we were? Sure!

Did we think, this will be easy? You know it!

Again, did we think we deserved to be parents? Heck yes, sister friend.

But as just about any parent will tell you, as you naively answer those questions with confidence like we did - you can never be ready for parenthood. Plain and simple, it will never be easy. And whether or not anyone deserves to be a parent, in whatever way that has meaning to you, it’s never that straightforward or uncomplicated - because life is just not fair. And despite what greater being you answer to, if you are spiritual, or if you believe you control your own fate - we all learn things about living as humans in this life that aren’t easy to comprehend or make sense of. More often than not, elements like time and space are the only paths to answers we find, and never when we need them the most.

This leads me to to the advice I give every friend who has come to me asking for advice on how to get through the awfulness it is to live through failed attempts to form a family: Embrace the Suck and Keep Perspective. 

Despite that we were completely unable to do this during our parenthood journey, this is the main piece of advice I give to any and every hopeful parent I talk to, especially those going through the IUI and IVF process. Although I have not had the pleasure of adopting a child, and cannot speak to the nuances of that experience, I have spoken to many parents who have and they have conceded that the advice still holds weight in any journey to parenthood. 

Let me break this advice into the two important factors of focus: embrace the suck, and then keep perspective.

Step One: Embrace the suck.

I’m not sure why we felt the need to keep it all together during three of the most challenging, upsetting, difficult, and awful years of our relationship. Maybe it was pride? Maybe it was embarrassment? Maybe it was fear of actually failing? But instead of buckling down together, relying on each other for comfort, and looking to each other for understanding as we navigated through it, we let the suck define us, and spread like poison to so many areas of our life that it should never have touched. We lost happy times together where we could have been learning more about each other, investing our energy in being better partners, and preparing to better support each other as parents. 

My advice to those tackling this battle currently is the same as to anyone who’s recently lost a loved one, or suffered a serious financial blow like being laid off, and that is to “embrace the suck”. Let it hurt. Feel it. Pity party if you need to. Do whatever you need to in order to understand why you are feeling the way you are feeling, get it out, and then take on step two: Keep perspective. My favorite example of this is to pull a Meredith Gray, open up a bottle of tequila, turn up the volume, and dance it out. (Grey’s Anatomy reference in case you have no idea what I’m referring to.) Pick a vice, be realistic about getting endorphins up, and work through it. If you want to eat a pint of chunky monkey - find a big ass spoon and dig in. If you want to drown yourself in cheesy goodness, order an extra large pizza topped with whatever extras make sense to you at the time, and don’t pass go until you are ready to pass out from carb overload. If you want to run it out, literally running away from the problems you are facing, find a kick-ass playlist, and use that motivation to get your burn on. Regardless of what you want to do, own it. EMBRACE the suck, and pick something that will make you feel better at the moment. Because tomorrow, my love, tomorrow you need to get out of your own way and find some perspective. 

Step Two: Keep Perspective.

Put the tiny violin back in it’s case. Chuck the empty cardboard pizza box in the recycles, trash the licked-clean pint container, put the remaining lime back in the fridge and hide the rest of the tequila (lord hope there’s still some left because too much tequila is really never good for anyone), put your big-kid pants on and focus. Perspective is going to be the only thing that will get you to a better place and if you gave yourself permission to embrace that suck, as hard as you were willing you, you better hold yourself accountable to figure out this important next step, for you will be better for it.

Let’s look at perspective like a what-if game - dramatically enhanced for effect, of course. If the universe sat you down and said, we can do this for you- make it so that this next IUI, this is the one that takes, but what if the following happens? What if that pregnancy turns into a fine pregnancy, but after the baby is born in the winter, you’ll suffer from such significant postpartum depression, you’ll never bond with the baby, and end up deciding you aren’t strong enough to have a second child two years later? Then that baby grows up as a single human versus one with a best friend of a sibling because you hadn’t gone through what the universe knew you needed to survive in order to be the parent you needed for your multiple children. Or, what if the pregnancy ends badly, before it’s able to come to fruition, because that embryo is actually not strong enough to survive the pregnancy? What would you say?

Now, what if the universe told you that your perfect baby, the one you’ve envisioned as part of your life for decades, will come to fruition but you had to be patient. That the reason why your son or daughter had to wait to be born on said date in the undecided future was because on their fourth birthday, they were going to meet a friend who would be their best friend for life, someone instrumental to the incredible human being they were going to be come. Or, that the reason why your child couldn’t be born this year was because by the time they reached their 20’s, they needed to have been preparing to graduate college while interviewing that May for their dream job at a firm where an alumni from their alma mater works, who will be crucial in ensuring their hire, that will shape the rest of their future from that day forward. Or, even, that if your child wasn’t conceived on the exact day they were supposed to be, inevitably born on the day some nine months from that conception date, that they would miss the opportunity to meet the love of their life, that would love them like no one else could, and be the partner they choose to spend their days with, growing and family and making a home together. What if the universe said to you, that they could provide a tiny human to you that would surpass all dreams possible, but that you had to trust them as they had a plan for everything. What kind of perspective could that bring to the incredible suck the trying and waiting and hurt the process of creating a family would bring you?

Like I said: Embrace the suck, and keep perspective.

***This is a slightly edited version of the first chapter of the book I wrote that lead me to blogging, altered to make sense as a blog post vs a chapter in a Survival Guide. I am sharing today after sending it to another friend who is in the “suck” of it all, in case someone else out there needs to read it today.

As always, thank you for being here… for following in our journey… and for supporting my dream to be a writer.

To anyone who reads this, and it resonates with you, please feel free to comment and share to show others they are not alone....

And if you are going through this currently, I hope you know you have every right to feel whatever you need to as you work to create your family. Whatever it takes. XO***

Fight or Flight

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

XO

It Will Be Ok.

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

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

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

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

How unprepared we were… 

How truly naive we were… 

How scared we were…

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

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

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

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

It will be ok.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It is challenging, but it is beautiful. 

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

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

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

But you, my friend, were built for this. 

And it will be ok.

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

What matters is, that IT WILL BE OK.

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

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

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

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

XO

What It Takes

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So, what does it take?

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

Lost

I was afraid he lost it.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The lines returned.

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

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

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

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

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

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

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

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

He continued to create for an hour into the film. 

It was beautiful.

Our boy had not lost his magic. 

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

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

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

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

XO

Happy Holidays!

Holiday Greetings, to you and yours!

2020.

It’s been a powerful year for so many.

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

About each other…

About what really matters…

About who we are and who we could be…

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

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

In a way that we couldn’t in person… 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

She can hold her own, though.

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

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

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

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

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

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

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

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

We learned how much we took for granted…

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

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

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

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

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

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

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

Improv of Autism

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

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

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

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

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

(C)Becky Abrams Photography 2020

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

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

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

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

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

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

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

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

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

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

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

(C) Becky Abrams Photography 2020

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

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

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

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

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

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

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

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

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

(c) Becky Abrams Photography 2020

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

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

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

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

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

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

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

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

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

Hustle BUS-tle

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

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

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

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

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

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

The bus comes at 7:55am.

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

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

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

They went right to their seats.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Was I mad? Sure.

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

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

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

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

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

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

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

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

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

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

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

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

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

Maybe that gentleman will never see this.

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

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

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

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

The Cool Mom.

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

How did she do that? You ask?

She brought home nerf guns.

Let’s back up.

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

That shopping trip, I won.

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

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

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

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

The only one to get injured that day was me.

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

I am the Mom who cleans up the mess.

I am the Mom who is the target.

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

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

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

But that’s the thing.

There can’t be two cool moms.

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

Because she is pretty cool.

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

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

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

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

Ugh.

This is why she is the cool mom.

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

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

I’m the worrier.

The keeper of all information.

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

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

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

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

Not a lot of room left to be cool.

But that’s ok.

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

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

Out.

I outed my wife today.

Less than an hour ago, while emailing with a client, I outed her without realizing I did it. And then, when I just talked to my wife, asking “Does (so and so) know you have a wife?” as she was giving us a contact for a doctor that could help our son, so I was unsure what details Steph had told her, she said “Hell, no. She knows I have kids though.”

Welp.

I outed my wife today.

And then I lied to her about it on the phone.

Now… if she goes back to check emails, she’ll see I outed her. But frankly, she doesn’t have time for that today, running from client to client, which is why I’m managing emails.

My wife is a very smart business woman. She built a business over a decade ago, one that she put into overdrive in 2017, kicking ass and taking names in a man’s field. 

She has a crew of employees who have told her that she is the best boss they have ever worked for. 

She has a long list of impressive clients, who she has worked hard to impress.

She is a respected innovator in the field, constantly collaborating with, and advising colleagues throughout New England, particularly about technique, and how to run a successful business.

My wife is kind of a bad-ass.

But… my wife is someone who has to make sure she wears her hair down when she goes to meet a new client. She intentionally softens her appearance, so that when she meets that new client, they will see her as less threatening, and not question how dare she think she could run a business in this male-dominated field. Most often, she is able to ensure confidence as she talks the new client through the quote, because she is more knowledgeable than most, regarding process and product.

She’ll make small talk, joke and laugh where appropriate, always offering banter to create that relationship that is so crucial to why her company is what it is. She is honest and authentic with each person she meets, which is why she is simply so loveable. Because she is - loveable.

But she is cautious, and always aware. 

If someone asks if she has kids, she’ll share that she does- because parent-to-parent, a bond can be formed. “Twins, she’ll say, and a two-year-old.” Each time, the client will inevitably say “wow, you look great for twins - or three kids!”

Listen. Ya’ll. That body did NOT carry any of those babies. Just saying. Yes, she looks great, but come on now. Give credit where credit is due.

However, she doesn’t - or rather - can’t. Because she doesn’t know what telling that new client “well, my amazing, beautiful, talented, overachiever of a wife did- but thanks” (because if she was honest, that’s what she’d say!) will do to the current opinion of her they are forming.

During today’s political climate, there’s even an element of lawn decoration that gives her a hint of who exactly not to tell.

This client, that all she knew about her was that they moved up from down south, had such decoration.

This client was a client that she said to me, “I was so scared when I pulled up, but then I met them and they were lovely.”, admitting how she hates the immediate wall she puts up in assuming who someone is because of what they support. In those moments, she too is just as biased, assuming they would think less of her if they knew she had a wife because of their political beliefs.

Yet… while with that client, she was comfortable to disclose our children have autism, which has a stigma similar to being an LGBTQ family, only one disclosure was made.

And now… I’ve outed my wife, and lied about it to her.

I share in the hopes that one day, we’ll be in a world where opinions are not made based on who we love. However, here we are. Where I’m left nervous that since I outed my wife, that client may not choose to move forward with the project. I may have cost my wife, and her team, a significant project and important business revenue. All because we love each other and have built a truly spectacular life together. 

Teach your children that labels are merely nothing but informative, not definitive. That humans are humans - beautifully complex- each needed for their uniqueness, and the different they bring to this world. We may not always need to agree, but we are damned if we do not include all disagreements to be present, respected, and heard.

*Please note that the client did respond to the email in which I outed my wife like I had said nothing out of sorts, with continued lovely conversation, as she is truly a lovely human. Please also note, that I received permission from my wife to post this.

Sink or Swim

Sink or swim?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Muscle Memory

CONFESSION: I’m hiding in my office. 

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

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

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

I’m hiding so he won’t see me.

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

No exaggeration.

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

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

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

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

He does not line his toys up around the house. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

XO

Papa's Beach

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Artist

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

After all, it’s the circle of life.

Xo