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***

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

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

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

If my son was in your care...

Before COVID-19, a good friend who is a social worker asked me what advice I had for her as she worked with children on the spectrum in hospitals. At the time, I had some thoughts, but never got them to paper.

As I sat today, during one of the tougher days with the twins, I found myself grasping for perspective, and my thoughts landed back to that conversation, but how it relates to our current state. What advice would I have for anyone that needed to care for either of our boys, but particularly Luca who hasn’t found all of his words to express what he needs, should he be put in a situation where I could not be present as his advocate, caretaker, and comfort. 

Although the emergency rooms are not filled with toddlers his age, we just learned of the death of one while we watched the news last night, which means it could happen. That in mind, if this is of any help to someone who’s responsibility is to care for a child like Luca, here’s the only advice I can think of that could be helpful. 

If you find yourself needing to care for a boy like ours, in a situation where we could not be present, he would be in fight or flight mode... and he hasn’t let me cut his nails this week, so if it’s fight mode, he will draw blood and leave a mark... like the one he dug out on my chest today. Please be gentle if you need to protect yourself. He is little, and even though he is fiercely strong, he is our baby, and he’s just scared.

If he runs from you, you will not catch him, as he is fast on an average day, but could outrun a championship linebacker when he’s scared... and his little body can fit in places where you won’t be able to find him, taking away your time and energy to search for him when you are needed somewhere else. Small spaces will make him feel safe, and he is far too good at hide-and-seek, so please don’t let him run. 

When you finally catch him, he will laugh at you when he is scared or sad, worst if he is mad... but he will break your heart when he finally cries, because the anguish in his big hazel eyes will pierce through your heart. He loves compression, so if he lets you, please hold him tight… give him a moment when he thinks you are us, and when you feel his body release, please hold on for another minute longer, so he knows he’s not alone.

When he finally starts to trust you, I hope you have an iPad, and YouTube installed on it. Make sure it’s charged because he will use every ounce of juice it has to calm down by focusing on finding his videos. 

And please, for all the love there is in this world, have some kind of box or bag of figurines or cars that he can inspect, line up, and use to take his mind off being so scared. Even five or six pieces to give him enough of a grouping to require order and sorting will be enough. Get creative if you need to. 

Lastly, by no means am I trying to tell you how to do your job, as I know that what we are asking as a society during this pandemic is already too much, so I hope you don’t take any offense in the extreme measures I’m asking you take with my son, or children like him. My job is to make sure he doesn’t end up there in the first place, so we will continue to stay home, wash our hands religiously throughout the day, sanitize everything, and pray that our children do not end up in your care. 

But if for some reason my son, or a child like him, does end up in your care, please don’t worry about anything I just asked of you… because there isn’t anything that will stop a parent of a special needs child for being there when their kids need them… not even COVID-19, so I won’t be going anywhere… you just keep on with the good work you are doing doing your job, and I’ll keep on doing mine. 

In the mean time, I’ll keep remembering that this too is temporary, and all the sleepless nights that he is having without school, or a dependable routine of *OT, speech, and one-on-one attention from an aide, and scheduled dependable expectations with learning and social interaction… this too will all be a memory eventually. If you’re strong enough to leave your families every day to protect, care for, and save families like mine, the least I can do is work to keep my family out of your care. 

*This post originally mentioned ABA therapy, as the twins attend a school that incorporate some principals of ABA therapy. As we are two years into the diagnosis, all I know of ABA therapy is that our school has deemed it as the least restrictive environment of it, and any time I’ve mentioned it in the past, that’s what I’m referring to. I’m grateful to those who have clarified what it entails, with far more experience than I. I am merely trying to share our story. Thank you for being here.

Connection...

Connection…

Over the last few days, I’ve had Ryan Tedder’s words ring through my head… “Can I get a connection, can I get, can I get a connection… I can see it in my, see it in my reflection… Oh, can I get a connection?”

Ya’ll… we’re oversaturated in learning so much about the current pandemic of COVID19, that it’s hard to think about anything else. As humans who crave that human connection from others, social distancing is something that is scaring some into seclusion, while being ignored by others who aren’t giving it the weight of seriousness it deserves. As parents to autistic twins, one of which thrives from other social interaction, and one of which who could care less if he has it, we can see so many perspectives on the state of our country, and how it impacts our family, and those around us.

As I scroll through my social media feeds, I’m seeing the following…

Friends laid off because they can’t work as schools and public places are shut down. These same friends have families to provide for, and responsibilities to take care of - a heavy burden to bear while in this heightened state of anxiety while we watch the nation’s crisis unfold before our very eyes.

Friends doing the laying off because their organizations cannot withstand the financial hit the pandemic' and the quarantines it is requiring to stop the spread are causing. These friends are doing incredible good for our world, and did not wish to lay off the hard working employees who have given their organizations so much of their time, energy, and commitment.

Friends who work at our bars and restaurants, places where so many of us go to get away from our lives for a night, where someone else waits on us, answers our every request, provides us food and beverage, and often listen to our problems which are not theirs, just to make us feel better - who don’t know what the status of their crucial income will be during the quarantines.

Friends who are parents who are preparing for the home school that will need to happen during the two (or three in our case) week period where their children are home from school for quarantine; trying to understand how to best meet their needs for learning and routine and social interactions crucial to their continuing to grow, while working to earn a living that makes all of that possible for their children. We are in this boat.

Friends who work in our healthcare system, are first responders, and fire and police officers, risking the front lines each shift, to take care of those in need, protecting those who need protection, while aware of their heighten chance of exposure, and the chance they bring it home to their families.

And then I see the response the virus that isn’t serious, and I think about my friends that are listed above, dealing with how the pandemic is effecting their lives, who are also witnessing messaging that may feel like it’s downplaying said impact, or even worse, mocking it.

I’m not here to preach, each effected by the status of our current situation as a world is to deal with it however they can, in whatever way they need to. Hey, we have a son who laughs when he has hurt someone because he hasn’t learned how to deal with shame or regret. We understand first hand how everyone deals with emotions, and how they express them, differently.

All I’m saying is, as we look towards the ever important “connection”, particularly while our world is in crisis, that maybe we should be careful about what connections we are putting out there for any and all to reach.

An incredible human being - like seriously one of the best - named Nancy Lyons, for whom I have the utmost respect and admiration for, went live to Instagram yesterday, and her REALLY COOL company, Clockwork, gave a recap in this article about Social Distancing with Humanity, on ways we can provide connections to those who need it - without compromising others. Check out the list of really smart ways we can provide that connection we’re all craving, and add yours to the list!

Here are a few ways that we intend to connect over the next three weeks, as our children’s school was required to shut down until April 3, and it will require a new way of operating as a family until next month.

1.) ROUTINE CONNECTIONS

Our twins are on the spectrum, so they survive off of routine, but even their little sister Alex finds greater success each day when she knows what to expect (schedule-wise), what’s expected of her (behavior-wise), and when she will get the things she needs each day (food and rest) outside of the social interaction from peers. As we are under quarantine- social interaction in person is a hard stop- but, like we suggested for Clockwork’s list- Facetime play dates and check-ins are definitely something we can arrange, and have begun to do so. Whether it be virtual story-time, or a game of iSpy, there are different ways that we can use Facetime to feel like we are playing with friends without losing out on that in person connection gratification.

2.) NEW CONNECTIONS

I noticed on our town’s Facebook group, that the local senior center was requesting if kids wanted to be pen pals to their residents. My kids can’t write, but they LOVE to send video messages, particularly when singing Happy Birthday. I messaged their director, offering this, and am working to have them sing Happy Birthday in individual messages to anyone that might be celebrating a birthday but can’t have outside visitors.

3.) AVAILABLE CONNECTIONS

I’m going to rely on visual schedules, online guides to activities, pinterest boards for how to make something from nothing, and any resources their teachers provide to keep up with the twins IEPs in order to fill the kids days with on going learning and fun. The amazing @MrsRachelHollis preaches that you can learn ANYTHING with a google search bar and a growth mindset, so this month, I’m going to learn how to be what my kids need so that the learning does not stop, and that this doesn’t become a miserable experience for all of us. Hopefully, in that process, as I continue to gain appreciation for everything their amazing teachers and administrators are, I may gain additional appreciation for myself, and the ability to show up as the parent they need, during their time of need.

4.) PERSPECTIVE CONNECTIONS

This is going to give a LOT of quality time with my kids over the next month. My wife’s company will continue to operate in the homes that are willing, as her employees need the hours, but the majority of the time I’ll be with the three babes. These are moments I’d miss out on without this opportunity. This is a gift. Where some are looking at it as a disaster, I’m hoping considering this perspective will help change some of that. Yes, no one is saying this will be easy, and it’s SUPER easy to have perspective when you haven’t even hit day one yet, BUT as a reminder - there are too many parents who would give anything to get time with their kids like this. There are too many parents who have lost their children to difficult battles with fatal diseases, or tragic accidents, that would give ANYTHING to be forced into quarantine with their children for three weeks. This is a gift. A chance to know them better. A chance for them to know me better. A chance to roll up my sleeves, tackle this ABA thing, work through all my anxieties, and show up for my family. This is a gift, and one I am grateful for.

5.) HELPFUL CONNECTIONS

One of the best messages I’ve seen come across my feed, and have gone on to share, as well as watched friends then share from my feed, is the offer to help anyone who needs it. We do not have an endless supply of toilet paper or food, but we can easily share with those who need it. We may not be able to offer child care (because I’m still figuring out how to go solo for three kids, two with special needs) but we’re happy to be Facetime buddies with your kids to help with boredom or joint home school lesson planning. We may not have hours on end to help a neighbor with all their errands, but we could easily find coverage for an hour or two to ensure they have the groceries and medicine they need by running to the store for them and dropping the items off if they are unable. And for those friends suffering from anxiety like I do, or working through something they just need someone to talk with about, but can’t make it to a licensed therapist during quarantine- by no means do I have a license, but I do have air pods, and a great sense of empathy from experience, and would be happy to be your listening ears at your time of need.

6.) SELFISH CONNECTIONS

You better believe that even though I can’t typically make it to my awesome local Mom’s group’s MOM’S NIGHT OUT, that I will be FRONT AND CENTER with a big glass of wine, for the virtual version later this week. I even offered to figure out what tool we should use to make it possible. Because THAT will be a connection where I can vent, laugh, probably cry, and relate to my peers in a really healthy selfish way. Counting down the days ladies. Counting down the days…

Think about these connections as you are sharing things on social media. We’re all scrolling like crazy. Remember the friends I spoke for earlier in this post. And maybe, post with greater grace and understanding for those this impacts, even if you feel like you aren’t one of them…

So, Can I get a connection?… xo