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.

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

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

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

The Cool Mom.

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

How did she do that? You ask?

She brought home nerf guns.

Let’s back up.

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

That shopping trip, I won.

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

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

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

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

The only one to get injured that day was me.

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

I am the Mom who cleans up the mess.

I am the Mom who is the target.

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

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

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

But that’s the thing.

There can’t be two cool moms.

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

Because she is pretty cool.

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

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

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

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

Ugh.

This is why she is the cool mom.

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

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

I’m the worrier.

The keeper of all information.

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

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

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

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

Not a lot of room left to be cool.

But that’s ok.

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

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

Sink or Swim

Sink or swim?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Muscle Memory

CONFESSION: I’m hiding in my office. 

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

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

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

I’m hiding so he won’t see me.

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

No exaggeration.

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

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

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

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

He does not line his toys up around the house. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

XO

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