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***

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

The Special When

When we found out we were pregnant, we started to imagine their futures. We started to think about what could be for them one day. 

When we picked out their names we looked to reflect a path we hoped would be possible- providing them strong, dependable, serious and relatable names.

When we pictured what their paths may look like, we thought about this close bond that they’d have as twins. They’d grow up always having each other… a partner in crime… a shoulder to lean on… someone who would always have their back. 

When we navigated those sleepless nights of newborn twins, juggling breastfeeding and pumping, diaper changes and tight swaddles, we told ourselves… this too shall pass.

When they rolled over for the first time, we thought, “A milestone! we hit a milestone!” and anticipated so many more milestones to come.

When we talked about their futures, we gushed over the endless potential sports they would play, the potential jobs they would have, whether or not they’d want to go to college or just jump into learning about the family business… We promised each other we’d support whatever dreams they might have… 

When the boys were diagnosed with autism at 18 months, we were in denial. We thought their speech was delayed because they were twins without older siblings and had never been in daycare. When doctors said they weren’t sure Luca would ever talk, we responded with determined disbelief that the experts had no idea what they were talking about. 

When the boys hit age two, and we started to really learn about what autism would mean for our family, we started to understand how severely unknown our road ahead was, and how all those assumptions of hopes and dreams we had for our boys shifted…

When the sleepless nights returned, on top of bringing another newborn in our house, we started to wonder if we’d ever sleep again.

But then, something clicked… 

When we learned about the magic of autism, we dropped the self-pity and the potential doom autism could mean for our children, and focused on the incredible road that had yet to be paved would look like.

When they started to make significant progress in school, finding words we weren’t sure we’d ever hear out of their mouths, we leaned in hard to asking for help, being open to whatever autism may bring and researched wherever we could to learn about how to be the parents they needed.

When Jack went to his first birthday party of a classmate, played with friends, and even sat down to sing before cake, we began to see glimpses of that life we thought may be ahead for our boys, both despite autism, but also because of it.

When COVID hit, and they took away the routine and resources the twins received from their school, we thought it might be temporary, but stayed open-minded to our ability to show up for them.

When the weeks passed, and the sleepless nights outnumbered the ones with sleep in them, our tired bodies began juggling the chaos and anxiety the pandemic left on our family. We began to have a hard time keeping perspective that the regression happening before our eyes with the twins wouldn’t be permanent. 

When I reached out to their academic team, and then the administration above them, as well as the Super Intendant begging to know what plan lay ahead this summer, when only the students who were in serious need like our twins would be in the school district, limiting exposure for the virus with plenty of resources to get our twins back on track, we found very little perspective left to focus on, as their optimistic promises to put a plan in place continued to fall flat.

When we learned, just last week, that the summer school their medical diagnosis, and assessments of their incredible academic team assigned them, would be limited to hourly increments daily, we started to feel defeated. 

When we look at the magic in their autism now, we see it being buried by their anxiety, need for routine, longing for their peers, and regression that has shown to potentially have permanent damage.

When we look ahead to their future, we worry that the lack of what we can provide for them right now, during however long this pandemic keeps them out of school, will seriously effect who they could be, the life they could live, and the choices they will have when the time comes - forget what sports they will play, if they will want to go to college, or what jobs they may want.

The special “when” for children with special needs is being ignored with the severity of everything going on in the country right now, and although it may fall low on the priority list for so many of the talented decision makers out there who could do something, it remains at the top of our priority list as their parents.

So I ask you, WHEN will the medical diagnosis that outlines what our children need be enough to get them back on track, so that their many special whens of the future can remain bright, full of hope and possibility.

When?

What do you need?

“What do you need?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And then it hits me.

I need to know it gets better.

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

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

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

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

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

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

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

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

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

Our Village

“It takes a village”, they said.

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

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

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

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

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

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

Sincerely, Christina. XO

Are you grieving?

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

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

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

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

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

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

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

And then, the second stage hit: anger.

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

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

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

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

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

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

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

Thank heavens this week I found acceptance.

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

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

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

Moments I’m now paying attention to include: 

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

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

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

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

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.

How Parents Are Made

How Parents Are Made

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

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

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

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

And then the coin flipped.

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

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

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

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

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

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

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

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

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

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

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

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

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

Raising the Wild...

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

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

But ya’ll… NOT EVEN CLOSE.

I’m exhausted.

I’m fried.

I’m wiped.

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

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

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

Raising the WILD.

No, seriously.

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

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

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

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

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

• Gentle Hands

• Teasing isn’t Kind

• Soft Voice and Open Listening Ears

• Space is Kind

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

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

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

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

I winced.

I laughed.

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

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

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

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

I wasn’t using my words.

I wasn’t asking for help.

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

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

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

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

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

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

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

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

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

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

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

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

Xo.

Five Powerful Things

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

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

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

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

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

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

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

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

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

The Weight of Anxiety

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

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

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

What is anxiety?

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

What does it feel like?

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

What causes it?

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

How do I act during it?

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

How do I manage it?

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

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

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

The Weight of Anxiety 

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

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

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

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

Ways You Can Support Someone with Anxiety

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

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

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

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

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

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

And then, there's Alli...

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

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

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

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

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

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

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

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

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

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