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

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!

5 Things You Can Do To Support Your Friends Who Are Parenting Autism

Someone asked me recently, how to be there for us, or in general, for those parenting autism. After thinking on it, here are 5 things I came up with, that I thought others may find helpful to know.

1.) Just Ask.

If you are parenting neurotypical children, and trying to support a parent of a child(ren) on the spectrum, and simply don’t know, it’s ok to ask. Lead with love and curiosity, and ask to learn what you don’t know. Every child is unique, despite if they are on the spectrum or not, so parenting each child is unique in it’s approach, maintenance, and execution. Every friendship is unique, and I know when friends have asked me about the diagnosis, just sharing the stories of our day-to-day, help them to show up and support our family in ways they wouldn’t know how to otherwise. If you are asking from a place of love and wishing to truly support your friend, chances are they’ll be relieved to be able to be honest with you, and grateful you are willing to meet them where they are comfortable.

2.) Send Caffeine.

Ya’ll, your friend parenting autism is not sleeping. And not in the way that they could possibly survive without caffeine. Whether they drink a pot of coffee black a day, or straight shoot with shots of espresso like I do these days, or maybe they are mad for Matcha- whatever it is, they most likely don’t have hours in the day to take a nap and catch up on the Z’s they lose in the middle of the night. If you’re thinking of your friend, and you want to send something that could help, I promise, for any parent I’ve spoken with who is up with kiddos all night, a free coffee is pretty darn magical. Us east coasters run on Dunkin’, but Starbucks, Peets, whatever your flavor, it can seriously go a long way. Not only does it say, “I’m thinking of you” but it says “I see you, you’ve got this, keep going.” Well, at least that’s what I’m convinced my four cappuccinos tell me every morning… a shot of magic energy in every shot of espresso.

3.) Bring Wine.

Most likely, your friend hasn’t made it out for ladies night in a while. It’s not as easy as you think to get a babysitter, and, from my experience, my guess is staying home for bedtime routines is a requirement. Truth be told, by the time the kiddos are asleep, the parent probably shortly follows to their own bedroom, not knowing how much sleep she is going to get that night. But stopping by with a bottle of wine, leaving all judgement of whatever you are walking into at the door (as most likely you are about to witness a witching hour right before bedtime for the kiddos), and smiles ready to help in anyway needed with clinking glasses as the reward at the end of it- can be the ultimate way for a mom who never gets out, to feel a little less like just a mom, and more like someone who still finds time to spend with her friends- even if the friend is the one bringing the time to her. Having a conversation with another adult about something other than stimming, or triggers, or behavior, with unexpected laughter, while dressed in sweatpants and bra optional (you know you were thinking it), can make a really exhausted care giver feel more like that person you once knew before kids, and just enough of a pick-me up to make any hangover that accompanies the next morning worth it.

4.) Love our babies.

It can take a care giver or teacher months to get a child on the spectrum to pair with them- and that’s with training and understanding to put in the work. But, from what I have seen, for as much work as it takes, it’s pretty simple. Show up, and show up again and again until they know your face.  FaceTime instead of calling. Stop by after work, or for a play date on a Sunday morning. And don’t expect our babies to come to you, be ok with however long it takes for them to pair with you. It needs to fully be on their terms. You need to earn their trust, and their want to spend time with you. Celebrate it when they do. Because they will make you work for it, but it will be incredibly worth it.

And, if you bring kids into the mix with you, make sure you teach them how to show up too. Explain to them that just because our kids might not say “hello” back, or be comfortable running around with noisy chaotic fun, or like to give hugs and loves at the end of a visit, it doesn’t mean they aren’t grateful for the companionship, and that they don’t bring something truly special to the friendship. Encourage they be open to wherever the play date takes them, removing expectations from the mix, providing important opportunity for learning, grace, and simple joy.

5.) Sit with us in the dark.

Brene Brown, Empathy Researcher, says “Empathy is...simply listening, holding space, withholding judgment, emotionally connecting, and communicating that incredibly healing message of, ‘You’re not alone.’” Sometimes, all we need is someone to sit with us during the moments we question what we are doing, fully aware that we are navigating blind in a space without doors or windows. As I’ve said so many times before, Autism is magical, and has a truly beautiful lens that it places on your life as a parent if you let it, showing just how incredible your children are because it navigates, showcases, and highlights your child’s gifts right before your eyes. But parenting, in general, can be hard. And when the “rule book” doesn’t look like all the ones your friends, family, and published strangers look like, it can sometimes make you question every decision you make. I’ve heard Brene explain that to have empathy is to see a friend sitting in a dark room alone, and that your actions are not to rush in and turn a light on, or even walk by, say a quick hello, and leave, but to enter the space quietly, sit beside your friend, maybe even hold their hand, and just be. Just sit with us in the dark, for however long we need you to. Remember, we’re strong, committed parents, who put our children first. We won’t be sitting there long- there is laundry to switch, lunches to pack, pick-ups to arrange, therapy to get to, etc… but if we need a minute, let us know we aren’t alone in it.

The LOVE in the lines...

This morning, one of Luca’s beloved bird figurines had an accident.

Unsure of exactly what happened, my wife and I threw ourselves into triage mode when he ran to us panic-stricken over a very small broken plastic beak. The tortured expression of complete agony that filled his face was unbearable.

At first, I attempted to use clear tape, the smallest piece needed, telling him it was a bandaid, but it only made him cry harder for his friend.

Steph then ran and grabbed the quick drying plastic glue, and clamped the two very small pieces together in the hopes it would dry quickly while I worked to distract Luca. I took him around the house quietly singing him songs, working to calm him down, reassuring him his friend would be ok.

Alas, the glue did not work, and our poor boy exhausted himself, distraught that he had failed one of his birds, and that we, his parents, could not fix him. We hid the broken bird, and took him to the living room with his favorite candy, putting on his favorite movie, and held him until he forgot about it. Forgot about it for now, that is, as his memory is beyond compare. He will remember it, at which point, we’ll have to navigate that reality.

We’ve been in this situation once before. While on vacation in Provincetown this summer, we had been on our way back on a walk into town, and he was playing with one of his Superwing toys. As he let it fly through the air while he sat on my shoulders, a bounce in my step made him lose his grip. Destiny had other plans as that little friend dropped to it’s demise, and right down a drain.

Only two blocks from the house we were staying, I held him tightly as he thrashed in my arms, running back to the house to try to find a distraction to help calm him down. Incredibly upset, he yanked at my hair, scratched at my face, and did everything he could to escape my grip and run back to save his toy.

When we made it into the house, where Steph had been getting some work done while the baby slept, we quickly explained the situation. While she tried to comfort him, I went to the toy room where the rest of the Superwings toys were, took out the duplicate of Dizzy, and tried to hand it to him, showing him there was another one - so not to worry!

My wife, unlike myself, is much faster on her feet with this kind of thing. She shook her head at me, to which I hid the duplicate. She got down on his level, took his hands into hers, and locked eye contact with the sad face who’s tears were streaming faster than ever before. She said to him, holding his hands tight, “Is Dizzy in the drain?”, to which he nodded his head up and down. With great certainty, she then promised him, “I’ll go get Dizzy”.

She gave Luca to me, while sneaking the extra Dizzy from my hands, and rushed out the door. Following her lead, we guided Luca to the large bay window, so he could watch his Momma run toward where he had lost his friend, and disappear behind a hedge. He began to panic again, when he couldn’t see her, crying and thrashing, until after a few minutes that I’m sure felt like a lifetime to him, she reappeared holding the exact same friend he had lost down the drain. She held him tall in the air, her arm outstretched so he could see it, beaming with pride to show him that all was alright.

As soon as she entered the house, he grasped the airplane, calmed his breathing, and brought it back to where the rest of his collection remained, so he could line them up, and bring order back to the chaotic being he was living as for the last exhausting adventure.

Not going to lie… after we knew he was settled, I definitely looked at my wife and sarcastically said, “Feel like the hero?” to which she did her sassy shrug and strutted to meet him in the living room to sit by her son, basking in the glory of fixing a situation I couldn’t.

The thing about this need for lines that I’ve learned from both of these experiences, is that it’s not about the line itself. There is LOVE in the lines that Luca, and children like Luca, create. There is time and attention to the way they each create their lines. There is tender care taken for each individual toy placed in the line. Luca will often study each toy chosen in his line to fully understand it - almost as if to see it not only for what it is, but for what it could be, as part of this greater picture he’s about to create.

What may seem silly to some, about the need to line everything up, to our boy, is respect for his things, and the beauty he sees in the collection of them as a whole. The angst and torture he feels when one is lost or damaged is heart breaking. It is not just a toy, but HIS toy, and the way he feels responsibility for it is beyond admirable.

My hope is the next time you see the lines… this perspective helps you to see the love in them, the way Luca reminds us each day, the every thing, no matter how small or insignificant to someone else, could mean the world to someone you care about.

Weekend Adventures with Autism

That title might feel funny read, but I feel like this has been a key survival strategy to making our weekends entertaining, enjoyable, and agreeable to all five members of our family.

My mornings typically start around 4/4:30am with Jack, and then eventually Alex around 5/5:30am. Luca will stroll down the stairs at one point before 6, at which I’ve most likely already had at least one cappuccino. Steph will join the motley crew by 7, and then a full long day is before us.

Although I was always a morning person, the many #sleeplessnightsofautism have definitely made caffeine, and strong caffeine at that, a necessity for functionalities. I’m a planner, so by the time my wife joins our breakfast table adventures, reading books over whatever concoction the three kids decided worked for sustenance, or on the playroom floor playing among too many toys spread across the colorful tiles, I typically have an idea in my head for how I think we could most effectively spend the day. AKA, how we could distract all three kids with something exciting and entertaining, while ensuring the baby takes her two naps, there are decent meals at lunch and dinner, and she and I can agree on a pace that makes us still like each other by the time we get them back to bed. Any one else chase down the daylight hours like this?

As my wife owns her own business, there are usually “work hours” we need to make happen each day, so as long as we can ensure those are taken care of during Alli’s first nap that morning, it leaves a prime six or seven hours to take “an adventure with autism”. The latter disclaimer is because not every adventure is made for our family. We have to ensure the ride won’t be too long, that there won’t be long lines to wait in when at said adventure, that we aren’t near busy streets or in an area where Luca could run away, and that wherever we go won’t overwhelm either of the twins in any sensory fashion (particularly loud and bright activities can create havoc for our boys.)

Some “adventures with autism” require a third party rental adult, whether it be Auntie Sammy, or Granny & Pop Pop, or a favorite baby sitter… those are the ones where we face elements that Luca’s fight/flight mentality could put him in harm’s way, or that the offerings at the adventure hit different preferences for the twins.

This weekend, at around 6am, Steph was up early, and while the kids were enjoying their iPads, we dared throw the news on for a hot second. Across the TV came a plug on WMUR (our local news station) for a new aquarium in northern NH, called Living Shores. It showed hands-on experiences for kids, as well as an Aviary, which is Luca’s favorite thing. (If you follow us on instagram, I’m sure you’ve seen his many bird figurines.) We quickly googled it, and made a game plan to head up just as it was time for Alli to nap, thinking she could do so in the car. We even reached out to friends to come with us.

This is where lack of coffee and planning did not serve us well. Yes, we noted the 2.5 hour drive, but figured if kids napped, they’d be in SUPER good moods when they got there, and if it was over-stimulating, they’d have the ride home to relax. Clearly our friends that we convinced to join us thought the same thing, because they quickly packed their crew up of triplets, and headed north on our coat tails.

We purchased tickets ahead of time, and our first red flag flew when the time-slots available to purchase were only in hour increments. We had gotten the impression this would be an all-day affair, and as it was located within StoryLand, an outdoor theme park, figured it would have a similar amount of entertainment for the kids. But to drive 2.5 hours up, to spend ONE hour at a facility, and over $100 on the day, didn’t necessarily feel like we had our smartest adventurer hats on.

As we realized our start time was at noon, and would be in town by 11:15, we stopped at a local McDonald’s so the kids could have lunch and stretch their legs in the play place. Luca ran right to the maze, despite the kids that were playing in it already were some what loud. I could feel my chest rise in anxiety worried the noise would set him off, and watching the maze rise upwards of 15 feet, with very small enclosures to climb through, I wasn’t quite sure I’d be able to get to Luca in time if he became impatient trying to navigate past another child, or worst, if the noise echoing through the slides hurt his ears and he decided to go after said noisemaker. My wife gave me a look like, “please don’t make this more than it needs to be”, so I found a table with Jack and Alex so she could go get their lunch.

Jack was extremely hesitant to play, and despite taking his shoes off and entering the maze, he made it about two minutes before he preferred to sit at the table with Alex and I and wait for his lunch. Luca played for a solid 30 minutes, continuing to run the maze/gauntlet with comforting repetition. It was so good for him to move his body. He is always happier when he can take on physical activity. Jack contently ate his lunch with Alex, and we ended up taking Luca’s in the car for him to eat on the remaining 10 minute drive to the Aquarium.

When we made it to Living Shores, the facility itself seemed small. I quickly realized we underestimated just what the day could entail, but thought it would be best to make the best of what we could, so we tried to amp the kids up and bring them all inside.

From the moment inside, Jack got very scared, and when Jack gets scared, he tends to get dramatically so. His voice will elevate, panic sets in both his tone and on his face, and he starts to search for ways to leave- whether by throwing a tantrum, or finding an exit himself. We did everything we could to keep them calm as we waited in the line to enter the facility.

We kindly asked the lovely gentleman taking photos before you entered to allow us to skip the line, as Jack was obviously not having it. Once inside, Luca lit up, walking directly to the walls of fish tanks on display. He could have watched them swim for hours, completely intrigued in their movements and grace. Alli stood beside him, glee and delight spilling out joyfully in her expressions, but my buddy Jack huddled behind my legs, holding on for dear life.

Steph moved ahead with Luca and Alex to give Jack and I space, and I did my very best to breath through my own panic that we had made a grave mistake bringing our children so far without doing enough research into what it would really entail. Jack and I talked through how he was feeling, and I assured him I would not leave him, and we would take it at his pace. I also reminded him friends were coming soon, and if he wanted to wait near the entrance for them, we could do that. That seemed to relax him enough so that he could start to enjoy the tanks of fish.

It didn’t take long before Luca could hear the birds, as they weren’t more than ten feet from the tanks. Steph moved ahead and brought Luca and Alex to explore the aviary. I could hear his giggles when he entered the cage from where I stood with Jack down the hall. My heart sunk for a moment as I realized that here was an experience that could bring one brother such joy, and the other such pain. I stayed focused on Jack, who was hiding in the stroller, and kept watch for our friends.

Eventually, our entire party was present, and we worked our way through the small facility of hands-on learning with the kids. Steph switched with me, bringing Alex with her, so that I could enjoy Luca’s delight and new obsession with one particular bird, who was very friendly. Luca could not get enough.

It was such a different experience to watch his fear meet his excitement, turning into fearlessness and he worked to convince the bird to come to him. He watched the trainer as he reached out his arms and allowed the bird to climb over him. Luca would mimmic his movements, continuing to move closer and attempt to touch the bird. He was experiencing such joy.

There were also tanks where you could touch the sharks, or let fish nibble at your hands. And the kids loved the sandbox with the animated sea creatures that appeared from an overhead projection.

For families considering visiting Living Shores in Glen, NH, it’s located in the Story Land parking lot, and I would say that it’s well maintained, entertaining, wonderfully staffed, and great for what it is. If you have to drive a distance, I would suggest pairing it with another activity for littles, unless you are focused on littles who could spend hours in an aviary staring at one bird, like Luca could have if we let him.

It was yet another learning experience on one of our “weekend adventures with autism”, but different, and worth the pure joy we watched Luca experience.

When your kids don't feel well...

One of the hardest things I have found through this journey, is watching one of our children in pain while feeling helpless to figure out how to help.

Luca woke up last night after being asleep for about an hour - screaming in pain, and it wasn’t until after five or six very long minutes of our trying to get him to tell us what was wrong, trying to give him words like “it hurts” or “owie” to differentiate if he woke up with a nightmare or if he was in excruciating pain; showing him his “what hurts picture chart”, begging he show us what hurts, to simply work to calm him down enough that his actions began to focus on his ear, tugging and pulling and screaming as he refused to let me let him go. 

Luca was so upset but refused to take pain medication, so we did what tends to happen when the twins are in that much pain- a Tylenol suppository- which is equally awful for both the child receiving it and the parent providing it.

After about ten minutes, the medicine kicked in and his shrieks became cries, that began to subside to whimpers. We held him as long as he needed until he was ready to go back to bed, truly exhausted but still in steady pain.

Thinking our boy would finally be ready to rest, we went back to bed, only to hear his level 10 pain screams again. We took him from his room so he would not wake his brother and walked him around the kitchen, holding him close and trying to comfort him while we checked with our doctor. After being advised to try Motrin- which inconveniently does not come in a suppository, we had to hold him tight and work to get him to take the Motrin (majority of which he spit all over us). 

This is when his fight/flight mentality kicked in, and he ran for the basement door to leave the house. After trying to distract him in numerous ways, and calm him down so that he wouldn’t wake his siblings, I decided to put him in the car and drive towards the ER in case he couldn’t calm down. I grabbed warm clothes, socks and shoes, and both our jackets, and we headed out the door.

Two minutes in the car he was at peace- still holding his ear, but the movement and being strapped in tightly in his car seat, upright where the pressure would subside. 

Great, I thought, some peace for the poor kid. But then, as I was driving with instrumental pop on Spotify to sooth him, I realized that it was nearly 10:30pm at night… and I was tired. I don’t mean the kind of tired where you’re annoyed to still be up… I mean the kind of tired that was dangerous to be driving. So I text my wife and said I was going to bring him back. He was content after all, right? 

The moment we got back to the house and I brought him upstairs, hoping we could cuddle together to a movie until he passed out, he started screaming again. Loudly! I tried bringing him to my bed, where he refused to stay, clearly determined to wake the whole house up. I ended up snapping at my wife when she asked why I didn’t just bring him to the ER like we planned- because she was saying it from her position tucked in bed where she’d been sleeping while I had worried about driving off the road with our son in the back of the car. 

When Luca tried to escape again, still screaming, I realized we very well may need to be in the ER all night. So I grabbed our things again, put him back in the car, and headed to the hospital. About 15 minutes into the drive, he began to fall asleep. I thought about the ER during flu season, and how many joked the hospital I was headed to was where people went to die. I thought about the hospital bill that would come from a potentially long evening with a screaming autistic child where I could be told there was nothing they could do, while exposing Luca to something much worse. So I decided to take a left and head home instead of continuing on to the destination. I got home and it was just before midnight, but this time Luca was so exhausted he let me cuddle him in the guest room until he passed out. 

I crawled back into my bed after midnight, drifted off to sleep, and felt a jolt a few hours later when Jack crawled into bed with us at 4:30am. Oh the #sleeplessnights of parenting children with autism. You’ll hear so much in regards to the lack of sleep I’ve gotten since pregnant with the twins, which will better support the fact that the one blessing in disguise last night was that Jack actually slept through the night so that I wasn’t juggling two sleepless toddlers. There truly is always something to be grateful for if you can keep the right perspective. 

I brought Luca in to the doctor today expecting without a doubt in my mind that he would have a nasty ear infection. But after a quick examination from the best doctor I know, she declared his #eartubes were in tact and clear, there was a little drainage, but otherwise, he would persevere. The direction was to try Flonase and continue with the tylenol/motrin. Although I did not get the diagnosis that would give him a shot of antibiotics and magically cure everything for him, I did watch Luca get on the scale by himself, and then ask the nurse to check his height but standing under the measuring tape anxiously looking up at her; I listed to him say hello to the doctor, and let her listen to his heart beat without fuss; and I watched him proudly grab my hand when it was time to leave and say “see you soon.” All important moments that didn’t happen at our last visit less than 3 months ago.

And yet, I sit here as I type this, and I anxiously await the day that Luca can say to me, “Mommy, my ear really hurts”, or “yes, the medicine helped”, or even, “I’m so sad”. I know for so many parents of amazing nonverbal children, they’ve navigated the other opportunities for communicating with their children beautifully, and this is an area in which I should find patience and excitement for those days, versus the anxious frustration I feel in the moments when I cannot help my son. But I am human, and I am forever grateful to have a partner in this #parentship (parent partnership), so that I do not have to navigate it alone. 

About Us...

My name is Christina Young, and I’m a mother of three children under the age of five, two of which are autistic twin-boys. As a photographer for over a decade, I’ve worked to capture other people’s stories through moments in time, enhanced with editing to create timeless portraits of emotional significance. When our twins were born in 2015, I took a maternity leave for three months, but returned to the lens as much as I could during their first year and a half as part of our family. Once pregnant with our daughter, however, my love of photography had to be put on hold.

Three months into our second pregnancy, we learned that our twins were autistic. We slowly understood the signs of their very different ends of the spectrum, and learn the scope of what the boys would need. Bringing a third child into a family with twin toddlers is a handful in itself, but the diagnosis and new set of expectations on our lives threw us for a complete surprise.

Once our daughter was born, we were knee deep in understanding everything the twins would need, from IEPs, to ABA Therapy, to all the work to be done at home, that we began to lose sight of why we thought we could be good parents in the first place. After the first year of being a family of five, we finally start to find our groove, and get the perspective we needed to be happy, present and respectful parents. But looking back at that mess of a year, and all the struggle we went through, we can really trace it down to one feeling - that we were alone in what we were going through, and no one could possibly understand.

This is far from the truth. The incredible autism community is mighty and growing every day. I decided to document our story on instagram and this blog, in the hope I could help other parents who may be in that first year, grasping at straws, and desperate for perspective. I hope to be a resource and lifeline to others if they need someone to talk to. Thank you for taking the time to read about our journey, and please leave any feedback or questions you have!