How did you know?

Lately, I feel like the most common question I’m asked when I share the twins’ diagnosis with someone is “how did you know?”

Full transparency? I didn’t. Neither Steph or I did.

Yes, when family members came to visit, they consistently be asking the boys “when are you going to talk to me”, and we just chalked up their speech delay to the fact that some boys take longer to talk than girls, and that they were twins, so they must have their own twin language.

It wasn’t until we were on vacation with friends just before the boys turned 2, that someone saying something about it finally started to stick. A good friend who’s worked with infants and toddlers for over a decade, questioned if we were going to get them tested/observed while watching how Luca played by himself in a corner as the other kids ran around chaotically playing together.

I can remember the strange juxtaposition it put my heart in, as her question both pissed me off (feeling like she was outwardly judging my parenting) but also gave me pause that maybe I should be more concerned. She wasn’t one of my younger siblings who lacked any authority in raising littles, or a random stranger that barely knew my kids. She was an active “auntie” in their lives, who had significant experience working with kids their age, and particularly sets of multiples.

When she left that afternoon, my wife and I compared notes, and shared in our frustration, never admitting to ourselves or each other that maybe we were missing something. The following week, at their 2 year-old check-up, the reality set in when I could barely fill out the age-screening paperwork noting their milestones, asking you to stop after you had said no to 3 in a row. I think I stopped at question 5 out of 20, and realized that I was in for a tough conversation with their pediatrician.

Their doctor set them up for a screening with the state, which meant further observations and scrutiny of our boys. We felt like we were answering the same questions, over and over again, only to meet the same concerned pity glances from each practitioner, that I know understand to be the “yes, this one’s a classic case, and this parent is so naive she has no idea what she’s in for.”

Even after the initial screening at age 2, where we were then granted assistance from the state to have ABA Therapists work with us within the home, I was in complete denial. How dare these people think that I have a lifestyle where once a week, I can drop everything I’m doing, to have two strangers come into our home and try to “fix” our kids.

OOF. That hurt to just publicly admit. But I’ve recently learned that I need to work to work through what makes me uncomfortable, so I’m going to say it again. My exact thought process when I was told by professionals that my children needed more help than what they were getting, and that the state was going to offer free, professional help, that would come to our home- where our boys felt safe and protected - to work with them WEEKLY to get them the tools they needed to be successful in this world - was how it was going to effect MY schedule. How selfish is that?

I look back now and hang my head in shame at how frequently I’d tell the ABA therapists at the last minute that I couldn’t go into work late that day, or ask to move the appointment only to cancel it. I know, for sure, that I had to be one of the parents that fell into the PITA category for the incredible humans who were working their tale feathers off just trying to help us, because I was still in the dark about what was going on.

How did I know? Plain and simple. I didn’t. I was ignorant. I was unaware. I was avoiding the situation because it made me feel like if it was my reality it meant that I was a failure as a parent. I was so concerned with not giving up my life outside being a parent, that I was completely ignoring that my kids needed help. They were happy and loved, and although raising twins was hard work, I was under the simple impression that our love was enough to give them anything they needed.

I was VERY wrong.

I was simply unaware.

I truly did not know.

They were little. They were boys. They were twins. There were so many excuses I could find that I chose to ignore what everyone else could see, but we couldn’t because we were in the middle of the chaos of it. The only thing that stood out to us as concerning was that Luca could not sit still in his high chair, as he would rock back and forth, almost without intention. We could see that it calmed him, and when we asked the pediatrician about it, they said that it could have to do with the acid reflux he had as a baby, but it was completely typical and to not worry about it, as many kids liked to move around in their chairs. As for Jack, the only thing that was glaringly obvious, was that he had my “flare for drama”, and it tended to intensify around transitions. His big feelings were far bigger than any 2 year-old could handle, but we just thought that was age appropriate.

At age 3, however, we received a gift that I don’t know if we’ll ever be able to repay. As the boys had both received an official diagnosis, the state approved their attendance in a day program at an incredible school, two minutes from our house. The twins were assigned a team of people, including two individual aids that would be with them at all times, and a plan designed just for their needs, called an Individualize Education Plan, or IEP.

The school performed their own evaluations over the summer, and during the last few weeks of August, I was able to meet with their team that included administrators, teachers, speech therapists, ABA’s, and a physical therapist to work with their gross and fine motor skills. Each talked to me with such kindness as I processed how much help they believed the twins needed. My daughter slept in my lap as I hugged her for comfort, bravely trying to fight back tears. This room of women barely knew me, and the last thing I needed them to see was how scared I truly was.

As we worked our way through each twin’s IEP, and I sat in that uncomfortable conversation, I started to pick-up on something that has been key in my ability to show up as a present parent for all three of my children. These women, all incredible in their own right - truly angelic and patient and just wonderful- was there with me to do their job. Their job was to get our boys up to speed, using the resources they knew would help them, through the proven processes and practice they’d used with thousands of students before my children. They knew what I didn’t. And all I could do in that moment was to lean in, and realize that my job, as the parent, was to show up, every day, and continue to be the twins’ advocate, support, and unconditional love. It wasn’t my fault that I didn’t know what the teachers did. I had spent my career in fundraising. I could sit in front of someone who had more money than I could ever dream of, and ask them to make a six-figure gift without a worry in my head, but this terrified me. So we remained grateful for the opportunity to send them to school each day with these professionals who impressed and comforted us, and gave us faith that we could do this together.

Fast track two years later, and as we raise a 19-month old daughter, reaching the age where others were noticing what we were missing in our twins, we are faced with a daily awareness of how much we didn’t know how about raising toddlers.

Alli asks to eat with a spoon, and have milk in her cereal. Things the boys still refuse to do. (I will say, however, ice cream for the twins is a total different story.) Maybe it’s the texture for them, maybe it’s the mess of it, but they want nothing to do with cereal and milk- even at age 4. By 1-and-a-half, Alli needed to be having what we as adults were eating for breakfast.

We constantly wonder if we would have been more aware, or more present in understanding and accepting what friends and family were telling us, had Alex been the oldest sibling, but the truth is, we’ll just never know. And that’s ok. Because as parents, as long as you lead with love and your children’s best interest at heart, you are doing you job.

My advice for others finding themselves in a similar circumstance, is to not let the concerns or advice come across as we did at first, assuming the inflictions meant we were failing as parents. That clearly we weren’t paying enough attention to our kids, or had any clue how to parent, if we couldn’t get our kids to eat cereal with milk in a bowl with a spoon by 18 months old. We had never met autism before, so we didn’t know how to recognize it, assess it, or even work with it.

Now we do. Or at least learn more and more each day in order to.

And hopefully, as I continue to share our story, maybe it will help another parent or care taker not loose the time we did while they were so young.

The collateral beauty of a diagnosis is that there are resources out there to help your family, both your child in need, but also you as the care giver. They come with incredible human beings who also have your children’s best interests at heart. What I wouldn’t give to get back that first year with the two talented ABA therapists who were willing to come into our home and work with us, and to apologize for not seeing it, or being more present.

Time is the one thing we can never get back. So make the most of it while you have it.

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!