Improv of Autism

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

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

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

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

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

(C)Becky Abrams Photography 2020

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

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

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

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

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

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

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

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

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

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

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

(C) Becky Abrams Photography 2020

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

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

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

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

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

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

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

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

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

(c) Becky Abrams Photography 2020

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

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

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

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

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

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

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

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

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

The Cool Mom.

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

How did she do that? You ask?

She brought home nerf guns.

Let’s back up.

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

That shopping trip, I won.

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

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

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

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

The only one to get injured that day was me.

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

I am the Mom who cleans up the mess.

I am the Mom who is the target.

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

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

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

But that’s the thing.

There can’t be two cool moms.

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

Because she is pretty cool.

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

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

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

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

Ugh.

This is why she is the cool mom.

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

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

I’m the worrier.

The keeper of all information.

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

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

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

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

Not a lot of room left to be cool.

But that’s ok.

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

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

Sink or Swim

Sink or swim?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until they tell me otherwise...

I was talking with another mama today about our kids (shocker, I know), about who we hope they’ll be one day… and I felt Glennon Doyle’s words in the back of my head as I shared the story of the pretty dresses hanging in Alli’s closet that she refuses to wear.

I shared that I had adorable dresses I had bought for our daughter, that made her cry and scream in refusal. My favorite was a light blue and white pinstriped sleeveless, purchased for her second birthday photoshoot. I had set up sunflowers and balloons, and knew if I could just get her to sit for less than 5 minutes, I could permanently freeze the time in place, and remember that moment for years to come. However, when I brought the dress down with coordinating outfits for her brothers (incase the stars aligned and they all decided to pose), she was beyond distraught that it was she who had to wear the dress.

I look back and ask myself- why did I not just give her the white polo and navy shorts like she asked?

What would it really have harmed?

I had this picture of capturing our precious girl “while she would still let me dress her” and got caught up in what I thought it needed to look like, instead of just letting our Alli be Alli- the truest form of what she wanted to be at age 2 in that moment in time.

“Until they tell me otherwise…” is the way Doyle phrased it, when sharing with her audience in her memoir, “Untamed”, that she is raising two daughters and a son.

Until they tell me otherwise…

What an AMAZING way to start the description of one’s children.

As they are little, and two of them still finding their words, there is still so much self-discovery for them, that I feel as if this journey has yet to be defined. For Alex, the fact that she has no interest in dresses is merely a piece of it, not a dictation of what’s ahead. She also loves all things creative like music and arts and crafts, and her favorite thing in this worlds is a pink and white giraffe security blanket that we own 4 of incase one gets ruined.

Growing up scared to live my truth, one of the most important lessons I hope we teach our children is that no one else can be you. Plain and simple. Whoever it is you wish to be will be fully supported by us. No exceptions or expectations otherwise.

Where some children know by the time they are out of diapers, I did not know what my truth was until college. Partly, in fairness, because I never allowed myself to really consider it. I knew I was different. I knew I was scared. I knew I was not happy. I knew I felt unsafe to be true to myself. I battled multiple eating disorders, and struggled with self-harm, because I felt so trapped inside a body which I did not feel safe that I didn’t know how to breath, let alone really be just me.

I share this because, as someone who has grown older, wiser, and able to own the shame in those darker days, I can tell you what it feels like as a child to just simply not know - having not felt safe enough to explore what the answers may be, let alone ask the question.

In a day and age where our society is more accepting, but yet, still discriminatory… where people hold no expectations outside authenticity, but others require you to fit in their uncomfortable box… where some can celebrate the rainbows and uniqueness of every human being, and others still see those colors to mean less… it’s crucial that we continue to change hearts and minds by sharing our story, and it must start with our children.

While on the playground today, I heard a child say to my son that he shouldn’t be wearing pink crocks, because they were for girls. He said, “I like them”, and turned and walked away from him. I could not have been more proud.

It’s ok to dream about the potential somebody’s your children will be one day… but it’s truly important to make them feel comfortable and safe enough to simply be them, whatever discoveries they make along the way.

Until they tell us otherwise, we are raising two boys and one girl; each unique and incredible in their own way, their outcomes still yet to be defined, but so wonderfully open for possibility.

XO

The Special When

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

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

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

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

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

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

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

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

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

But then, something clicked… 

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

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

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

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

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

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

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

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

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

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

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

When?

What do you need?

“What do you need?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And then it hits me.

I need to know it gets better.

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

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

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

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

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

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

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

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

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

Our Village

“It takes a village”, they said.

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

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

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

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

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

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

Sincerely, Christina. XO

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

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.

How Parents Are Made

How Parents Are Made

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

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

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

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

And then the coin flipped.

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

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

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

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

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

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

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

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

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

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

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

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

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

Raising the Wild...

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

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

But ya’ll… NOT EVEN CLOSE.

I’m exhausted.

I’m fried.

I’m wiped.

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

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

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

Raising the WILD.

No, seriously.

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

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

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

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

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

• Gentle Hands

• Teasing isn’t Kind

• Soft Voice and Open Listening Ears

• Space is Kind

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

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

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

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

I winced.

I laughed.

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

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

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

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

I wasn’t using my words.

I wasn’t asking for help.

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

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

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

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

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

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

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

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

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

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

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

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

Xo.

Five Powerful Things

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

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

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

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

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

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

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

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

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

The Weight of Anxiety

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

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

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

What is anxiety?

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

What does it feel like?

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

What causes it?

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

How do I act during it?

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

How do I manage it?

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

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

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

The Weight of Anxiety 

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

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

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

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

Ways You Can Support Someone with Anxiety

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

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

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

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

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

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

And then, there's Alli...

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

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

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

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

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

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

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

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

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

Connection...

Connection…

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

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

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

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

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

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

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

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

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

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

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

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

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

1.) ROUTINE CONNECTIONS

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

2.) NEW CONNECTIONS

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

3.) AVAILABLE CONNECTIONS

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

4.) PERSPECTIVE CONNECTIONS

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

5.) HELPFUL CONNECTIONS

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

6.) SELFISH CONNECTIONS

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

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

So, Can I get a connection?… xo