Sink or Swim

Sink or swim?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Papa's Beach

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rainbow Bow Baby

This is Alex Rolins.

She is our Rainbow Bow Baby.

To be a rainbow baby, means to be born after a miscarriage. As this week we celebrated National Rainbow Baby day, I thought this post was timely.

As I’ve shared before, after the 11 IUIS and one IVF it took to conceive the twins, my wife and I suffered one miscarriage through IVF.

I can remember, at the time, I thought that if I worked hard enough, and did everything right, we could continue to have it all.

I could continue to chase my growing career at an organization that I cared about, so much so, that I thought I could carry a pregnancy during one of our busiest weeks of the year, for one of our most important, and most stressful events.

I even thought I could travel across the country at only four weeks pregnant, on very little sleep as it was, to work 18 hour days, four days straight.

I remember what it felt like to recognize feeling pregnant. I didn’t have that with the twins, because I got so sick so quickly, that it felt more like a ton of bricks. There wasn’t any subtly about it. Almost like flirting. When you recognize the flutter, and you think- what if?

I remember looking at my face and seeing the glow… no, not the kind from the Rodan + Fields Hydration Serum ;P Although, that does make me glow, haha.

The different “glow”. The “it” factor. I had it. I was pregnant, and I was sure of it.

It was confirmed before I got on that plane. I even proudly told the stewardess I’d need to board the flight first, because I was pregnant, and needed optimal seating.

I knew I was pregnant when I raced through the airport, after working for the eight-hour flight, only to continue the hustle on my phone all the way to the hotel.

I knew as I met colleagues that continued to pour on to the West Coast, even though I kept it to myself, not wanting to share the news just yet, afraid they’d hold me back at working as hard as I knew I’d need to over the next few days.

The night of the event, as everything went off smoothly, and I ran into one of my favorite people in the lobby, and felt that I just needed to tell him. My smile beamed ear to ear as I whispered my secret, begging him to keep it.

I knew the morning after as I cried in the hotel restaurant to a friend, both out of exhaustion, but also out of disappointment that all the work and hours and sacrifice I had put in, hadn’t been enough the night before to hit our goal.

I just didn’t know how much I had sacrificed until a week later.

When we got pregnant with Alex, or Alli as we adoringly call her, I got to feel that glow again, and experience every first with a new, more appreciative set of eyes.

After you’ve lost something, you have this strong sense of purpose in appreciating it when love returns to fill the gap it left.

Alli isn’t only our Rainbow Baby… but she is our Bow Baby as well, meaning she’s completed our family, and tied a bow on all the work it took to get here.

She is our light. She is our joy. She is our HAM.

This girl’s boogie is better than most, as she insists on shaking what her mama’s gave her.

Her smile is infectious, and even at a young age - she is funny.

She has the kindest heart.

And she gives the BEST hugs. (Ask the girls at daycare - they fight over getting them when she arrives. And not her classmates- her teachers.)

Alli is our Rainbow Bow Baby. And we simply cannot imagine life without her.

Through COVID, she’s reminded me that the dream I thought I was chasing, wasn’t the one I was supposed to be part of. This… all of this incredible life my wife and I have put together is the dream I always had, always wanted, and always knew I deserved.

To all the Rainbow Babies out there… the souls we carry as long as you let us, that touch our hearts, softening them while strengthening them at the same time, you are always with us.

To all the parents of Rainbow Babies, my hope is that your lives were both enriched because of and despite of the rainbows that will always be yours.

And to the parents who are waiting for the beauty of the rainbow, remember that this life is the only one we have, and perspective between the storm and the sunlight that hits the dew to create those prisms is yours and yours alone. Everything that’s hard in this life is beautiful, and collateral beauty is only for those who are strong enough to accept it. You are not alone. I see you. Just wait for this storm to pass. 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

We Need Your Help

It still haunts me… the moment when our son ran into the house, tears streaming down his face, screaming as his scratched at his face furiously. It paralyzed me. I found a way to move toward him and try to comfort him, but it required following him for a matter of 10 minutes trying to calm him down.

I had watched the scene that sent him spiraling before he entered the house. The neighbors had a small fire going, about 15 to 20 feet from our yard. Although Luca stood in his “trees” which are really just large weeds that have grown to create this super cool path for the kids to play in, I thought he was a safe enough distance. The wind that day, proved me so very wrong. He watched the fire intently, trying to understand it, listening to it crackle. But then a large gust of wind took the smoke at him, and as he watched it like a rushing wave on the sea shore, it’s current taking him under with out warning, the smoke attacked his small body, with sensory over load. He couldn’t breath, and you could tell it stung his eyes, as he raced inside in a panic.

I wet a facecloth and held it over his tear stained face to try to stop the burning. I sang quietly and held him, rocking back and forth, hoping to calm him down. My wife was outside mowing the lawn, some where in the front where I couldn’t reach her. I wasn’t sure if he was allergic to the smoke or whatever was burning, or if he was simply scared and just couldn’t tell me.

That’s one of the hardest challenges we face, while Luca is still finding his words. He isn’t able to communicate what he needs as well as Jack, and it requires an elimination game of sorts. As I was parenting solo, I did the only thing I could think of to find answers that might help. I hopped on Facebook, posted about the situation, and hoped someone in my network could give me the words to explain how he was feeling when Luca couldn’t. There was instant support and things to consider, and it helped me triage faster than I ever expected.

Luca calmed down, his eyes relaxed and the puffiness and redness faded. He drank water and calmed his body on the couch. The tenseness in his muscles subsided, but the fear in his face remained. We kept a close eye on him all night, as he flinched at certain sounds, his eyes always searching the outside with caution, clearly traumatized.

I think, as parents, we’re always watching out for what could potentially harm them, trying to either shield as best we can, or hope we’ve given them the tools to face it head on, feeling prepared and capable. One of the most challenging parts of Autism with littles, when they have a sensory processing disorder, is that many of the things that could trigger them are foreign to us parents. The way they also process trauma, without the ability to talk through it, can seem equally foreign.

Luca stayed inside for three weeks. Our boy, who I imagined living in the mountains one day, due to his need to be in free open space as often as possible, had now trapped himself in the walls of his home, rushing to close any door when open, and crying in fear anytime you asked if he wanted to go outside. He would watch from the windows for any glimpse of smoke, and studying our neighbor has he continued to chop wood in the same place he had for months. About a week after the experience, he had some how found a video on youtube of a crackling fire, and had started to play it repeatedly for comfort. I kept expecting enough time to pass where he would eventually just go outside. But after three weeks, I was starting to get really worried.

I couldn’t understand it. I couldn’t find a way to help him. I asked his teachers for help, and had even reached out to a friend who is a psychiatrist for a referral to someone local who could help us.

We took a chance of bringing him to an open field with his siblings, as I had hoped to take their annual photo with the apple blossoms. Although we weren’t able to get any image to be compiled in photoshop of the three kids, we were able to get Luca to run outside again, after parking in two different areas before he was interested in exiting the car. His feet hit the ground, the sun shined on his face, and you could see his body breath a sigh of relief. It was such a win for us. We let him run until exhausted, packing the kids back in the car with renewed hope.

We had opened the pool the last week of April, but decided to turn the heater on earlier than planned, just to see if he would go through our backyard to get to it. I went swimming first, sending him a video through my wife who was inside with him. He giggled, but still refused to go outside. The second day, we decided to just bring him out to the pool. My wife carried him, reassuring him he was safe, until he was in the fenced in area with 30,000 gallons of heated delightful water. That boy’s smile lit up ear to ear, he stripped out of his clothes, asked for his puddle jumpers, and jumped in with glee. It’s been 5 days now, and there hasn’t been one he hasn’t spent hours swimming.

The thing is, unless he’s swimming, he still won’t go outside. I still can’t understand it. A swing set that was donated by another family, and stained by my wife’s team, is sitting in our yard. I’ve worked, with the help of an amazing friend, to clear the area, removing hundreds of large obnoxious weeds, and level the ground. I enlisted my sister to help me pick up all the large, heavy, half-assembled pieces from my wife’s shop when the stain was dry, to get them to our back yard. (We did have to ask for muscles outside our own to get two crazy pieces- thank you friends who lifted those!) I even have 50ft of turf rolled beside it, ready to be laid out. Today I’ll spread a few yards of loam to finally level it, roll the turf out and hope we can start building the swing set this afternoon.

What worries me is I don’t even know if that will be enough to get him to play outside again. And what if it isn’t?

As a parent, I feel like I ask myself what-if’s so often, I miss being present, or at least as present as I want to be. I’m so worried about the potential, that I forget to live in the what is. I feel like lately, I’m always worried about what I can’t control, and now that I’ve found myself in a situation with real trauma, it’s testing my ability to show up and be the parent our child needs.

I’m working every possible answer I can control, by giving him highly preferred tasks in the hopes he can rebuild his muscle memory of feeling safe outside. If that doesn’t work, we’ll most likely need professional help, which may not be the easiest thing to obtain during these crazy pandemic times. Anything to shape the fears he has of going outside to be saved as a single memory, not the current reality of what being outside really is.

If you have any ideas, please share. I don’t typically ask questions here, but as I’ve connected with so many incredible parents who have walked in these shoes, or are on the journey as we speak, as well as phenomenal teens and young adults with autism, I am hoping someone might have something I haven’t thought of. Some way to understand what may click for him and make him feel safe again. Because if this swing set doesn’t work, I’m not sure what to do next. Thanks in advance. XO

The Decisions We Make

Have you found that you find kindred spirits in the strangest places?

Just recently I took on a new endeavor to try to help bring some money in during such a strange time of this pandemic. In that I found the most amazing teammates, incredible women who are also trying to provide for their family and create opportunities for other women to do so as well. Introducing myself and sharing my story, I found a mom who I connected with right away, as her son too, has autism.

She was warm, and kind, and that kind of person that if she lived on your block, you would be asking for play dates every day just so you could become best friends. She has been so supportive of the way I share our families story, that I when she asked my advice on something, I knew she would be comfortable that it inspired the following post.

As parents, particularly while our children are little, we are faced to wonder what of our bigger decisions, and the domino effect of their results, our children may have an opinion on when they come of age to form them.

There have been decisions Steph and I have made as parents that we know our children may have opinions on, from the serious to the insignificant. Some serious decisions, like that we used an anonymous donor to form our family, or that we only chose to have three children despite that we had additional frozen embryos we could have continued trying to give them the next partridge family with (we are pretty musical after all), tend to keep us up at night. Smaller ones like that all their pictures until the age they can handle Going to a barber will showcase haircuts done by Momma Steph with her best skill, and one or two by myself that had a little more Jim Carey feel with those awful straight bangs, or that I let Alex have two Oreos instead of one when she asks because it makes her happy, or that we were dog people and never let them have a cat (or a lizard, snake, spider, etc because that is NOT happening) might be something they hold against us for whatever silly reason.

Truthfully, one of the hardest parts of sharing our story, isn’t just how scary it is to be vulnerable, but is actually the intentionally it takes to make the tone represent something the boys will be proud of one day. I know one day they hate that people know so much about them. My hope is that they understand the intention behind it is to help others like us know they aren’t alone, and to shed light on the magic behind the diagnosis, reminding people that no one is merely one thing or label. Any one little thing about us, is simply that: one thing. It’s one part that makes up so much of the unique beauty we bring to the world; ever growing and changing to be who we want and need to be.

In short, if one day my children question the decisions we made, I hope my heart is just proud to have raised children who can think for themselves, and can form, defend, and believe in their opinions with enough conviction and passion that they aren’t afraid to disagree with someone they love. Maybe they’ll teach me a thing or two one day, that shapes the person I will become because of them, as we know the decisions we make for them today, shape them to be the person they will inevitably be.

I believe if we lead with love, patience, humility and grace, making every decision with good intention, then we can simply let the pieces fall where they may, and everything will be alright in the end. Good humans raise good humans, it’s as simple, and takes as much work, as that. Xo

Next Mother’s Day

Next year, for Mother’s Day, my kids will sleep in, letting us sleep in, and when they finally get up, will play together nicely, working extra hard for calm hands and quiet voices because they know it’s their moms’ day. They will take baths after breakfast, and get dressed in whatever matching spring outfits I found at Jcrew weeks earlier, so that I can take their annual photo in the Apple Orchard where the blossoms that have just begun to bloom make the perfect setting of white gorgeousness.

Next year, for Mother’s Day, when we get back from taking photos, we will put tables out on the lawn, decorated with gorgeous colored clothes, and have flowers everywhere. The kids will have made cards and gifts, and will be on their very best behavior, playing in the yard while we set up for our guests.

Next year, for Mother’s Day, I want to host a big brunch outside in our back yard. I want my mom to drive up and feel spoiled for making the trip, because all her children and grand babies are there to be with her. And when she and my mother-in-law sit together, laughing and watching their grand babies shower them with love, they will get along like old friends, without any awkward conversations or family drama that holiday gatherings typically endure, because we will all just be grateful to be together.

Next year, for Mother’s Day, we will grill deliciously marinated meats, paired with roasted vegetables, and pasta salads. We will make fruity drinks, and have an array of desserts that inevitably the kids will want to eat before dinner, and because it’s a happy day of celebration- we will let them. We will eat too much, take a break, and then eat again, while still having more than enough tasty treats to send each of my siblings home with some for the next day.

Next year, for Mother’s Day, I will sit on my deck after an amazing meal, and watch those same siblings teach their niece and nephews how to play croquet, and bocce in the yard, making memories that will last the lifetime of my children until they are old enough, and fortunate enough, to have littles of their own to teach as well. 

Next year, for Mother’s Day, after the day is done, and the kids have been bathed and put to bed, I want to be able to give my wife a card that enclosed in it, tells her I have booked us a weekend away, where there are no children, and we can just be us for a night again.

This year, for Mother’s Day, it will feel like every other day lately, and that’s OK. We will laze in our pajamas during the morning, and only change into clothes (or a clean set of pajamas-don’t judge) when we are ready. As soon as Luca finally goes back to bed, since he has been up since 2am, I will too, and we will both rest our bodies for a couple of hours before officially starting the day.

This year, for Mother’s Day, we will get take-out from our favorite local breakfast place, and our pup, Piper, and I will enjoy the ten minutes of silence the car ride there takes us, while we wait for curbside pick-up, without anyone else in the car. It’s the only quiet we find since schools closed and the house no longer holds that solace for either of us.

This year, for Mother’s Day, my siblings and I will hop on a Zoom Call with my mother, to send her our love virtually, and safely, in this new normal, because she is of the at risk, who has done everything she possibly can to stay safe during this pandemic. As a breast cancer survivor, and someone who knows first hand what it means to fight for her life, she values every day since, and is taking every precaution to not have to fight again for a very long time.

This year, for Mother’s Day, the second virtual FaceTime call we will make will be to my father. First, to wish my step-mom a Happy Mother’s Day, but second, to see how he is doing on his the first one without his mom, who we lost to this pandemic less than a month ago.

This year, for Mother’s Day, as the day goes on, we will watch movies, and play indoors, because oddly enough, it snowed yesterday, and not conducive for yard games, or a photoshoot. We will most likely have to make up some of the school work we have missed this week, because sleepless nights with autism have made it hard to do much more than survive- working to keep all the kids happy, and safe from aggressive behaviors, let alone meet the homeschool requirements.

This year, for Mother’s Day, we will eat something from the crock pot or air fryer, or some sheet pan recipe, like we do on most days during quarantine when it’s not warm enough to grill. If we take a ride anywhere for take-out or drive-thru, we will make sure to bring happy Mother’s Day cards with the kids scribble drawings on them, to give to any mothers working on a day they should be home with their families, giving them with extra heartfelt thanks for everything they are doing to make sure our families can get what we need. Particularly because like many kids with autism, there are days our twins rely on nuggets and a happy meal to get any protein for full bellies. 

This year, for Mother’s Day, when my in-laws makes it over for dinner, I will have a glass of Chardonnay waiting for Granny, and two open arms for a hug, because as she is in our immediate circle, and someone we see every day helping with child care, she is someone we do not have to social distance from, and such an important lifeline I will be grateful to celebrate the important day with. We will makes sure to overly thank both her, and Pop-Pop, because without them during this pandemic, I am not sure we would be making it through with the grace and patience they make possible through their support.

This year, for Mother’s Day, when the kids are bathed and finally in bed, I will give my wife a hand-picked card, with as much love that I can write in it, telling her that whenever this is over, we will get time for us again. With the card will be boxes of her favorite movie candy, and an invitation for date night, where we rent a movie and put away our phones for the duration of it, pretending for two hours that no one needs us so we can just enjoy each other.

Mama, if you are like us, and preparing to spend this Mother’s Day in an unusual way, I hope my dreams of next year’s Mother’s Day help to inspire you to think of yours, in any of the moments when this years don’t feel like enough. Because there will be next year if we all do what we can to stay safe, continue to social distance, wash hands, and slow the curve.

And to all the incredible mamas who have to work this year, whether it be on the front lines in our hospitals and ERs, or as first-responders, and fire and police woman... to all the incredible mamas who are essential workers, and required to work in order to get that paycheck to feed their families, as delivery workers, mail service carriers, grocery store employees, pharmacy staff, gas station employees, and restaurant employees- thank you. THANK YOU from the bottom of our hearts for all that you do. Happy Mother’s Day to all the mamas out there- whether you birthed your children, or earned the title with every diaper change, life lesson taught, tear-stained cheek wiped, and open-armed hug- if you hold the title and meaning for someone today- may your day be filled with as much love as you have given to those who made you a mama. Until next year... XO

PS: I’d be remiss if I didn’t send a special Happy Mother’s Day to two additional women who shaped my life in ways that are instrumental to my ability to be a present, happy, and respectful mother. To Ma, up in heaven, who always gave me a home away from home, without question or expectation, I hope one day to have the house all my children’s friends want to be at every weekend. And to Anna, who continues to teach me about the mother I want to be, I’m so grateful to be able to ask the question: what would Anna do, and instinctually know the answer.

And to my love, my children’s Mama, and to the only reason I knew I could be a mom in the first place, because you promised to always be by my side… our parentship is the thing I will always be most proud of - despite that COVID19 is challenging it on a regular basis, forcing us to grow and be better every hour of every day for our children. Thank you for helping to leave a legacy where the best is still yet to come. Happy Mother’s Day. xo

Parentship

A few weeks back, on maybe day two of no school, life is over/*cough*/on pause, my wife had come home from work later than usual, after the first of many long days of adjustment for our new normal at home.

She was fried. As a small business owner, she hadn’t slept much, as her brain was feverishly trying to strategically rearrange the life of her business to make sure her team was protected, could continue to provide for their families from their Pro Image livelihood, and that what she built over the last two decades could survive this. She didn’t have capacity for much else by the time she made it home that night. But I didn’t have capacity for much patience or grace, because every ounce of it I had left had been spent trying to reassure our children things were fine, and the lives they just lost wouldn’t be gone forever. 

Inevitably, our lack of capacity that night lead to a heated conversation, and going to bed angry. Something we work really hard to not do. But the next day, when some of the feelings had settled, we took a few minutes to sit in the uncomfortable, and be honest about how we were feeling. She shared how scared she was for her team, her company, and how to provide for us, and I shared how for the first time in a long time, I felt invisible. That because all her capacity was being spent on her team and her clients, she had none left to see us, her family. That I was looking at really long and hard days ahead with three young children, two of which needed skills and structure that I didn’t know if I was capable of, that they were used to getting for 6 hours a day, that I was pretty sure I was going to fail miserably at. If the one person I chose to be my partner couldn’t find space to see me, I was worried I wouldn’t matter. She shared that she had a team of 10+ who could become invisible if she didn’t have space to think about them, and that if the team failed, she couldn’t provide for our family either.

We sat in that uncomfortable for a good 45 minutes. There were tears from both of us, but once we were completely honest, we were able to talk through a plan that got us both to what we needed. One that could be flexible and could pivot as needed. We understood that with only so much capacity at this time, and with both the business and our family having needs that had us at capacity level, we would need to own our roles but make sure to leave room for whatever else might come up by relying on open communication with each other on what we could handle, and when we needed help. 

That plan has been working pretty well for the last four or five weeks. But this week, after two really long sleepless nights with autism, I failed at holding up my end of the deal yesterday. The boys schedules are totally off, so emotions are high, bodies can’t stay calm, hands are not staying to themselves, and they are super quick and short to react. My reactions weren’t as patient or kind as they needed to be yesterday either. My wife had to call me out twice on the way I responded to Jack.

When she had had enough, she finally looked at me and said “what do you need?” I responded defensively, because I knew my actions weren’t attractive- but I was TIRED. She stayed patient, and asked me again- “what do you need?” After a minute, I cried. I was so tired. At 4am that morning, while Luca and Jack were up, I had been working on quotes we didn’t finish the night before for her work, so that we could keep up with making sure the team’s schedule was full. I had been patient and played with the boys at 5am, even though I just wanted to nap on the couch. And when Luca threw all of his toys at me, including a heavy-duty microwave, I was so tired I didn’t pay attention to my surroundings when I chased after him before he could throw something at Jack- I ran into the baby gate, scoring a solid bruise that still hurts. I cried because even though I napped for an hour while Alli took her morning nap, it wasn’t enough. I cried because I knew I wasn’t holding up my end of the bargain. I wasn’t proud of my behavior either, and was ashamed my wife had to call me out.

She looked at me and said, “this isn’t you, or the parent you want to be, so you need to tell me what you need, or snap out of it.” 

I could have fought back. I could have been nasty, but weeks before I promised to be honest, so I simply said “I am tired”.

She goes, “Ok, to to bed. I will put Jack to sleep by myself” as it was after 8pm and both Luca and Alex were already asleep.

I don’t ever not put the kids to bed. Jack usually needs to hold my hand to fall asleep, and ridiculously, it’s my 2 minutes with him at the end of the day that feels worth all his emotional roller coasters that come before it.

But I had just told my wife what I needed, and I needed to listen to myself, and let her show up while she was willing to.

So I went to bed.

And the kids slept through. Jack got up at 4:30 am, but he was willing to play in his fort (our master closet - don’t judge- it gives me an extra 45 minutes later to snooze which I NEVER get so I am letting it work as long as it can). 

I slept from 8:30pm, woke up at 1:30am to find everyone was sleeping so I went back to it, until 4:30am and didn’t get out of bed until 5:15am. 

I am two cappuccinos in as I sit in the playroom and type this up on my phone watching Alex and Jack play with legos at 6:30am. My wife is still asleep, and Luca is hanging under his sensory sheet, content enough he isn’t quite ready to get up yet.

I share this in case anyone else is struggling as a parent navigating the new normal, not just with their kids, but with their relationship as well.

Our parentship, aka parent-relationship, is one we put a lot of effort into. But while pregnant with the twins, we agreed to make sure she and I, outside of being just parents, always came first. If we couldn’t take care of each other, how could we possibly take care of our kids effectively. 

Sitting in the uncomfortable was a theme my therapist encouraged, that scared the crap out me. She said that if I always thought the worst was going to happen, I needed to find a way to let the facts debunk my fears. By sitting in the uncomfortable, and doing the work to be honest about how I was feeling in a situation and let others do so as well, I would learn that the worst that could happen, wasn’t really the natural outcome, slowly helping to build muscle memory in facing uncomfortable situations for what they are - momentarily decisions that need to be made, not monumental in size or life altering. 

As you face another week of this pandemic, ready to parent, teach, show up as a spouse, and get some work done to pay the bills on top of it, I just want to say- you can do this. You CAN do this. It looks to be that the country will slowly open up again, and although the newest form of normal may still not be the totally preferred one, hopefully it will continue to provide options that make things better able to meet everyone’s needs. 

If you find any of this helpful, what has worked for me is remembering to be present in our parentship, keeping open lines of communication, asking each other for what we need, and letting my partner show up when I ask her to. Nothing about the last couple of months has been normal and we have all had to adjust in some way. If you can sit in the uncomfortable long enough to find what’s comfortable, maybe the solution can be something you never knew you needed, but gets you to be better than you knew possible before.

XO

Oh and PS: if anyone has any tactics on getting a certain 4 year-old to have a calm body and a quiet voice- I am all ears! My sanity is at stake. Thanks in advance.

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.

Piper

Hi, I’m Piper.

Could someone tell me what’s going on?

My little humans haven’t left my house in weeks. It’s never quiet any more.

I was just getting use to having Mom home during the day, and the extra attention she’d give me when everyone else was gone. Now, I’m lucky if she gives me a snuggle when I climb into bed at night.

Momma still leaves the house every day, but when she’s home, I can tell she’s stressed. When she rubs my belly and scratches my neck, I can feel how tired her hands are from working all day. She hasn’t wanted to wrestle in a few weeks either.

Don’t get me wrong, there have been some perks…

Like the snacks the littlest human gives me regularly - she’s a good sharer. She and I like a lot of the same foods: chicken, peanut butter, and bacon. Now that she’s tall enough to get to the cheese drawer herself, she can be easily convinced we need another cheese stick,and that she only wants the first few bites.

Just the other day, one of my little humans, who doesn’t typically like me, and who pulls my tail for no reason, rubbed my back with his foot when I laid under the table. After dinner, I asked him if I could lay by him on the couch, and when he didn’t tell me “no” or to “stop”, I approached with caution, his eyes watching me the whole time. I gave him fair warning, eased in next to him, and felt his body get calm near me. He even put his hand gently on my coat.

While I laid with him, I could tell my little human wasn’t sure what was going on either. His energy was restless… and almost scared. I just laid there with him for a while until his breathing settled. He doesn’t talk much, so I wasn’t expecting him to tell me what was wrong, but it was nice to feel needed by him.

The other little human, the one who doesn’t stop talking, he knows my name now. He even tells his friends about me when he’s on the screen. Just yesterday he told me to say hi. Maybe soon he’ll want to play with me more than just making me the bear during that hunt game they play every day.

I love my humans… I really do… but…

Could someone remind them I’m out of Greenies? I saw Mom’s stock of my food in the basement with all the little humans food - but I don’t see any more greenies.

And maybe ask them to go back to school? I was just starting to enjoy how happy they were when they saw me from the bus window.

Thanks in advance… - Piper.

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

Family is Everything

Tonight I will drink wine… the expensive stuff on the back of the shelf in the basement… and I’ll order gnocchi from the only restaurant I’ve found that gets it even close to hers… and after we get our kids to bed, I’ll cry as I finish the second glass of wine, because one won’t be enough, holding my wife’s hand when I can finally let this all sink in... 

I often write about the collateral beauty of a situation…. Of the wonderful mistakes that come from unfortunate circumstances… or how to find the rainbow at the end of a rainy day…

I’m not sure how to spin this one… 

I’m not sure how to recognize anything but the collateral damage from COVID-19 as I work my way through this post…

When my father mentioned there had been a few cases of COVID-19 on my Nana’s a little over a week ago, I simply held my breath. As romantically naive of a dreamer I am, I am fortunate to have equal capacity for reality and logic. I understood what that could mean: outside visitors hadn’t been allowed for weeks, but now there was a good risk it would spread throughout her community, and my fierce and stubborn 98-year-old Italian little woman of a Nana, could fall victim.

I knew that feeling helpless would make things worse, so instead I imposed on my family asking each subset for selfie-video messages that I could compile into one message for her. It took less than 48 hours and each son, niece, nephew, granddaughter, grandson, great granddaughter and great grandson had provided a message that was quickly compiled and sent with a request of desperate gratitude to make it to her. Her wonderful nurses obliged, just 24 hours after they let us know she had spiked a fever. 

Later that day, they shared that she watched it with a tear in her eye, and despite her heavy breathing, with peace and gratitude. 

I’m having trouble finding the silver lining in this, because all I want is the chance to grieve with my family, those same 20+ individuals who rallied around getting messages to her so quickly, who know the ache of losing the matriarch of our family. 

During the last week, I found myself easily distracted by my less than silent household, running after one twin to ensure they don’t send the other to the ER (because seriously, unless someone’s dying, we are not going to the ER), and wished I could give my dad that distraction as he anticipated, and now mourns the second loss of a parent. 

I forced a brave smile while on facetime with my siblings as we small talked around the situation, asking if each other is ok, all mimicking the “fine” response and ignoring how each other’s eyes well up or voices crack, because we knew Nana may not make it. Now that the day is here, I wasn’t able to force the smile as my sister and I broke down instead.

Since I first heard that today would be a possibility, I have cried in the shower, because it was the only place I felt like I could let go of the weight of this, without worrying my children. But now that today is here, I yearn for the opportunity to have a wake and a funeral for her where there are acceptable places to be publicly broken for a moment, with others equally looking to sit in the sadness this loss has caused. 

Reflecting on her legacy, the most important lesson she taught was that: Family is Everything.

Nana lived her life with it as the consistent deciding factor, because to her, family gave unconditional love the unconditional requirement. 

To be family meant you were invited to dinner on Sunday: the day that woman would stand on the hard kitchen floor without rest, making pasta from scratch while gravy simmered on the stove top, just so that all the people she loved would gather around the table and find sustenance from her love to start another week. “The way you show someone you love them,” she’d say, “is to work for it, as long as it takes, and make the outcome worth the wait.” 

To be family meant that anytime you attended a family gathering, large or small, you gave each member of that family the respect and love they deserved both when you arrived and right before you left with a hug and kiss - EVERY ONE. From a young age we were trained to know each relative, even in the extended family, and to this day the greatest insult to an Aprea is if you leave without a hug or a kiss goodbye. Just last Christmas, after Luca had a full blown episode and we had to leave the celebration abruptly, my wife looked at me shocked when I explained I had to go back inside and say our goodbyes. 

To be family meant that every wrongdoing or mistake would be forgiven, and that the only worst case scenario would be disappointment, never disownment. Telling my Nana that my life was not going to be what she expected, or necessarily wanted, as I’d met the person I intended to marry, and it was not a “he”, was one of the most difficult moments of my life. I watched her heart break in front of me, fully aware that I was the cause. Years later, at my wedding, she said it was the happiest group of people she had ever been a part of, celebrating such a “happy day”. And then, when the twins were born, followed by her great granddaughter Alex, she told me how she couldn’t have been more proud. All she ever wanted for her granddaughters were to have families, and raise them with love, and fully bellies, the way she had raised hers. She may not have wanted, approved of, or accepted my marriage to a woman at first, but the fact that a woman was going to give her the family she had dreamed of for me, made it better somehow. 

To be family meant that you never gave up on each other. I can remember the first time I asked her why Papa had his own room, and she said that even if it required separate bedrooms so that your spouse's snoring didn’t drive you over the crazy edge, you still slept, loved, and raised your family under the same roof, because that’s what commitment is. My guess is it wasn’t just the snoring, but as so many of us are dealing with the stress of COVID-19, and maybe taking it out on our spouses because our typical outlets of dealing with stress aren’t an option (PICK ME), I’m trying to remember that commitment I made to say: for better or for worse; and be grateful my wife doesn’t snore… (Love you, babe.)

Lastly, for Nana, to be family meant that on the sad days when you lost a member of that family, that you should feel it in every ache of your being, because when you are family - from the moment you enter it, to the moment you leave it - you are never alone. Losing a family member, any member, is like losing a part of yourself, and it should be painful as it reflects the love you had for that person. My heart is broken today, but I know it will heal quickly, for it’s mourning the loss of an INCREDIBLE woman, whose legacy will live on in the family members she left behind.

Because family is everything. 

I am not alone in this. The death toll COVID-19 has taken on our nation is tragic, and families everywhere are forced to mourn in non-preferred ways. Many states in the US still haven’t seen the peak, but we are about to. 

To all those out there who have lost a loved one, sincerest sympathies, and empathy from someone who also has a broken heart. May the pain you feel in their loss merely remind you of the love they gave you while they were here, and their memories continue to warm your heart for all your days ahead.

To those on the front lines, both in the hospitals, doctors offices, and EMS services, thank you for everything you are doing to take care of those we love, even though it puts your families at risk. May your sacrifice save the lives of the ones you can, but may you not take any of the weight of the ones you can’t home with you. You are our heros, plain and simple, and may there be so many Sunday dinners in your future where the topic of conversation is light hearted and not so heavily weighted by the severity of your current days.

To those staffing the nursing homes where this disease is spreading like wildfire, and particularly to the incredible nursing staff at Orchard Cove who made sure my nana got to see her family one more time, thank you for caring for our loved ones like they are your own.

To the Apreas, who I wish I could be with so much, I love you, and I know we will find a way to be together soon. I can’t wait to take the first hour together to say hello to each of you, and the last to say goodbye, as each hug and kiss will have been completely worth the wait.

To my kids, Jack, Luca, and Alex, thank you for filling our days with distraction, learning experiences, laughter, and love. You make every single day worth living. And you can thank your great Nana that she taught me about unconditional love we will continue to shower on you every day, and how to make the most laboriously fantastic eggplant parm there is. 

To my wife, my irreplaceable partner in this life, I promise to buy your breath-right strips if you ever start to snore, and honor the commitments we made to each other on that “happy day”, pushing through whatever craziness this COVID-19 continues to throw our way, because you are my chosen family, and…  

 Family IS Everything.

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