The Struggle Is Real.

Have you ever found yourself struggling as a parent? Where every time you feel like you finally have it figured out, whatever next age or stage hits and you are back to square one of the struggle? Feeling frustrated, defeated, and completely unsure if you can “do this”?

And then, to make matters worse, every time you ask a parent who is further along age/stage wise, when it is going to get easier, the hardest and most frustrating thing to hear was that it won’t. “Not easier just different” they answer- EVERY time.

Parenting twins with special needs has reiterated that phrase in our lives each time I have found myself questioning if I can “do this”, this weekend being one of those moments. 

The struggle is real. And each time in the heat of those peak struggle moments, where all reasoning is gone and I am left on a mountain of built-up of frustration, fear and anger, I convince myself I can’t. I get lost in resentment of thinking “if this doesn’t get easier, I will never be able to survive this.” Not the autism... not the parenting twins... not the having a third... not the what feels like working three full time jobs (1.) in the job force, 2.) as a mom, and 3.) as a spouse....) the combination of trying to do it all without directions or a rule book... each one of those has been something I could tackle at any given moment, but the combination of all of it on any given day feels like the struggle will defeat me. 

I found myself in a pretty pathetic pity party, crying uncontrollably in the weight of it all, after a typical instance occurred on just an average Saturday afternoon. I lost perspective. I lost patience. I lost my grip. I let my child down because in a moment he needed me, I couldn’t show up.

I then took space. Took a breath. Walked away. Accepted help. And found perspective again. 

Have you ever been in that moment of struggle? Where it feels simply impossible to tackle? If so, for the parent that’s in the struggle like I am, here’s what I’ve learned...

Each time it gets unbearable, it’s because soon you will have to be stronger, in a way you never realized. You are building muscle memory and agility to be able to stay calmer longer, find patience faster, and ...

This is your work out.

This is your more than you can handle.

This is when you are thrown the straw that breaks the horses back.

Because it’s not about if you quit. 

It’s not about if you give up.

It’s not about if the straw breaks you.

It’s about what you do in the after math.

You’re a parent. If you quit or gave up it was momentarily. Reality snapped you back to where you had to keep going.

Muscle memory kicked in of needing to respond to a child’s needs. The behavioral pattern of showing up takes over and you do... just like you have, over and over again... you show up. 

There is always a way...

Can you find it? Can you ask for help if you can’t do it alone? Can you be proud of yourself for being willing to try? 

Remember, when working for that ever important perspective, sometimes it’s merely a matter or can’t vs. won’t, or in this case, can vs. will.

In case this was merely the reminder you needed today, ya’ll... you CAN do this, and for your kids, you know you WILL. 

So pour a cup of coffee or matcha or espresso if you are in my boat, and go get the job done. Because this never-ending journey of parenting waits for no one, and has difficult and exhausting as the struggle can be, the moments uniquely amazing to your journey are yours, and yours alone, to savor and appreciate, only earned and created through the struggle you endured.

You’ve got this. Xo

Dear Nancy Tillman

Dear Nancy Tillman,

My hope is you get hundreds, if not thousands, of letters like this, from grateful parents like myself. Parents who read their children your eloquent rhymes each night, turning the pages of your stunning illustrations, watching their imaginations run wildly into sweet dreams.

Parents, who like myself this evening, find themselves convinced that like the magic P.L. Travers created in Mary Poppins, know you didn’t just craft those stories for their children. Because even though your stories teach such valuable lessons to our children, as I read the words out loud each night, inflecting as I expect you hoped a parent would, emphasizing each important phrase, I hear you whispering in my ear to listen to what I’m saying.

As I work my way through “The Night You Were Born”, watching my son’s eyes anticipate when I will turn the page to when the bears will “dance until dawn”, smiling with such satisfaction in the merriment of the animals, I rest on the memory of how our hearts danced until dawn the night he was born, erasing the moments he took a stamp and “painted the walls” only hours earlier that evening.

When I take on your next book, “Wherever You Are”, and tell the story of how “I wanted you more than you will ever know, so I sent love to follow wherever you go”, I lock eyes with my wife each time, acknowledging in that moment, the three years of IUIs and IVF it took to start our family, savoring in everything we’ve created together, erasing any of the disagreement we had with each other that day by the time I’ve reached the page where you wrote, “my promise to you, is you’re never alone”.

If the twins are still awake after two of your books, the third to be read is usually “I’d Know You Anywhere, My Love”. As a parent to special needs, the message of “so if you decide to be different one day, no worries… I’d know you anyway”, provides such comforting reassurance each time. We have no idea who our children will be, but we stand by the promise to each of them that you close out with, of “whatever it is you imagine to be, I’ll just be so proud you belong to me.” In that moment each time, you hold me accountable to remember what my child can and can’t do, and the role I play in their lives as their advocate, their support, and their coach, their teacher, their cheerleader, and friend.

Tonight, as their eyes got heavier, I made it through only the first few pages of “You’re Here for a Reason”, where you remind readers that “you’re here for a reason, you certainly are, the world would be different without you by far,” tackling only a few more pages before they finally fell asleep. I lingered on the page for a moment, but then continued to read: “Life can be tricky, there isn’t a doubt, you’ll skin your knees trying to figure it out.” A tear trickled down my cheek. As I listened to the words I’ve practically memorized by now, it reminds me that even on the hardest days where I think I have no idea what I’m doing as a parent, that “to somebody else, you’ll always be strong.”

So, thank you, Nancy Tillman. Thank you for the amazing books that teach such important lessons to both children and parents.

*Oh, and thank you for including so many gorgeous illustrations, especially with the birds… they are my son’s favorite. - XO, Christina Young

What is an Autism Diagnosis?

What is an Autism Diagnosis?

According to WebMD, medically speaking it’s... “observing the behaviors of very young children and listening to the concerns of their parents.” It’s documentation by doctors stating that the child is “on the autism spectrum”, opening doors for care and support they wouldn’t get otherwise. 

For us, the autism diagnosis has been a gift. 

It’s been a lens with which to see our children with extra amounts of patience, kindness, acceptance and understanding. 

It’s been a gift to not judge our own parenting or let the judgment of others dictate how we parent our children.

It’s been a reason to relate to strangers outside our inner circle of friends, who are experiencing the same thing, or have in the past, looking to them for guidance and comfort, and providing the same in return.

It’s been an introduction to some of the most incredible educators/administrators/staff for whom we have the sincerest respect and gratitude.

It’s been an opportunity for us to ask more of those that matter to us, giving them the opportunity to show up in ways even they did not know where possible.

It’s been a chance to forgive our guilt. For the first two years of their lives we felt like we did everything wrong, particularly around not seeing the signs of diagnosis, chalking up the lack of language to be a “twin thing” or typical of the male gender’s learning delays.

It’s been a lesson in communication, teaching us every day that as humans we communicate on so many levels other than through speech, showing us connection at the most cherished level with our children.

It’s been a journey to understand that we don’t know what we don’t know. We have no idea on how to parent autism, but their diagnosis has given us permission to tailor our parenting to exactly what they need, each child uniquely different. 

It’s been a reminder that life is not what we expect it to, but that we can in fact handle more than what we thought because of the village that is behind us. 

An autism diagnosis for your child can be anything and everything you need it to be. If you’re questioning, fighting, curious about getting your child tested, the key is to do so early on. A diagnosis only stays for three years, and if your child is diagnosed before three years old, the opportunities for complimentary support are endless. If your child reaches age three, it’s so much harder to get the early intervention help that could provide your child the tools and resources they need to strive in the classroom/society, but more importantly, the tools and resources you could use as a parent to be there for your child the way they need you to. 

Sleepless Nights With Autism...

I’ve been meaning to write this post since the first time I shared what a #sleeplessnightwithautism actually looked like in our household on Instagram… Prior to that public share, family and friends hadn’t really seen the picture of what one of our very typical nights without sleep looked like. As I had explained it to folks, sharing that when Luca would wake up in the middle of the night, there was no other option than to give him the iPad and wait it out, the very common response I would get was that the screen was keeping him awake and I should just let him lie in his bed until he fell back asleep. When I would share about Jack’s sleep walking, that it could be upwards of four or five times a night, and worst when it began with a night terror, the common response would be to not let him sleep walk, and to lock him in his room until he grew out of it.

Let me clarify a few things, right off the bat. We sleep trained our twins, just like we slept trained their neurotypical little sister. Alex has slept through the night since she was 2 months old. It just wasn’t our luck with the boys.

The twins were small at birth, Luca was borderline premature, but they didn’t want to separate them, so neither were in the NICU. They remained peanuts, which I do believe effects children’s ability to sleep through the night, because full bellies definitely make it easier.

During the first few months trying to breastfeed twins, I would get as little as 30min naps in between each session. One twin would take about 30 minutes to feed, then I’d have to put him back into his rock’n’play, and rock him with my foot as I fed the other twin for another 30 minutes. After I would get them both back to sleep, I’d have to pump for 45 minutes, and as the twins fed on a 3 hour cycle, it would give me 30-45 minutes if I was LUCKY when all was said and done, to nap before I started all over again.

Now, yes, Steph would and could help. But after the first couple of weeks, when she was back at work, it was nearly impossible for her to. She was on high ladders painting all day, doing physical labor, and making strategic decisions - all things that you cannot do on the lack of sleep (trust me, I know), so I took on the brunt of it, only tagging her in when I needed her.

It did get easier once I stopped breast feeding, and switched to bottles, removing the need to pump, and giving me longer sections of an hour and a half to two hours in between sessions. We had tried sleep training at 4 months, but they were so adamant with not wanting to do it, that I simply couldn’t handle standing outside the door while they cried. I chalked it up to that they weren’t ready. We tried again at 6 months, and same thing. Finally, at 10 months, our amazing nanny at the time said, '‘I can’t watch you do this any more. You are a zombie, and you deserve to sleep.” The twins didn’t need to be getting up to eat any longer, and could at that point make it through. She wrote out instructions, explaining that I was to put each twin in their crib, say I love you, shut the door, go pour a glass of wine, and then text her to hold myself accountable. It was torture. Jack stood up crying for 57 minutes straight before he caved. Luca just laid there and played until he fell asleep, but Jack fought it tooth and nail. The second night, Jack only fought it for 42 minutes, and the third night was under 30 minutes. Finally, on night four, he fell asleep by the 15 minute mark. It had worked. I was about to get sleep again.

The twins were great sleepers in their cribs for an entire year. If they woke up in the middle of the night, they would eventually put themselves back to sleep. But as I was pregnant with Alex, and we were trying to think about making that transition to a family of five, we thought the boys would be ready for big boy beds. Jack had been climbing out at this point, onto his night stand, giving us a heart attack each time, and we knew we needed a crib for Alex, so we bit the bullet. Steph got them a gorgeous set of matching twin beds, and we made a big deal about it as the summer started. We had two months to get them used to them before she came.

But that summer was when the diagnosis was official, and many of the characteristics that come with autism were starting to become more recognizable - including what we now call “sleepless nights with autism”.

Those two months before Alex came were excruciatingly hard. Steph and I would each take one twin, reading them stories, and then laying with them in bed with the lights off, sound makers on, etc. We had tried to make sure we ran them around every night to make them tired before bed, we removed screen time, we worked to fill their bellies and have a really strong bed time routine. But nothing worked. We couldn’t lock them in and let them figure it out, because it became WWE and was always moments away from an ER bill. Even when we laid with them, both Steph and I would get punched, kicked, scratched, jumped on - you name it. I can remember going to work, and worrying someone was going to be concerned about the bruises and scratches make-up just couldn’t cover up. When they asked me at my physical if I felt safe in my home, I explained I was more than safe with my wife, it was my 3 year old twins that gave me pause.

This went on even after Alex was born, except the night time routine got harder. I’d have to feed Alex while Steph tackled the twins solo, and then as soon as she was fed, I’d switch so she could have some time with her before putting her to bed, and I could take the “tough shift” with the twins. There were nights I didn’t make it back to my wife in our bed until after 11pm. We weren’t getting any time together, and truthfully, we were pretty miserable. Even after I’d get them to bed, Jack would inevitably have a bad dream or wake up and sleep walk needing me to put him back to bed after only a few hours sleep. Fortunately it was usually right before or right after I’d feel Alex, but still…. it was starting to become unbearable. We even thought about splitting the twins up, giving one of them Alex’s room, and then dealing with it when she was old enough to realize she didn’t need to be sleeping in our bedroom any more. We figured we could strip the rooms of everything that they could hurt themselves with (joked about padding the walls), and then try the “cry it out” on big kids method everyone kept telling us was our issue. This didn’t solve the issue.

But then something magical happened. The boys turned THREE years-old. You know what they could take when they turned 3? MELATONIN. Our PC told us to give them each one pill, play in the playroom for about 20-30 minutes to get any extra energy out, and then head upstairs for bath-time routine. By the time we got them into the bath, they looked like zombies, so we hustled to get through shampoo, soap and toothbrushes, and by the time pajamas were on, covers were pulled up to chins, eyes were shut and our jaws were on the floor. LEGIT on the floor. In a matter for 45 minutes, our twins were passed out.

Now let me insert a few key things to think about with Melatonin. It’s all natural. SO many people need it. It’s non-habit forming, and ya’ll - when I go to buy it at the pharmacy, they are ALWAYS out of stock. So for all ya’ll trying to pretend you aren’t giving it to your kids- stop playing. You aren’t helping any one. Let’s be REAL about the situation. ESPECIALLY for children on the spectrum. Melatonin is one of the more commonly used sleep tools out there, and one that for us, was a life-saver.

That first night, after we put Alex to bed shortly after, I was able to sit at the dining room table with my wife for an hour, eat dinner, and have a conversation. We hadn’t talked like that in months. This started to become our new routine with this incredible new freedom, and I swear, saved our marriage from possible demise because there was no way anyone could have survived the way we were operating.

Jack’s sleepwalking continued, and around when Jack turned 3.5, he started having night terrors. We think it has something to do with his greater awareness and understanding, because he began to become more anxious. He’d wake up screaming around 9:30pm, and it could last anywhere from 1-5 minutes. This never really woke Luca, because he was “used to it” we thought, but we learned after he got his tubes in, that in fact, he just couldn’t hear him. Once those tubes were in, it became problematic. As you’ve seen if you follow me on Instagram at @twinningwithautism, is that when Luca is up, he is up. It can take him 3-4 hours to be able to get back to rest.

I started to research night terrors, and learned of something called “The Lully”. Unfortunately, they’re on their way out of business, or I’d share it here, because it completely cured Jack of his night terrors, but the science behind it is interrupting the circadian rhythm as they fall deeper and deeper into sleep. The melatonin worked so well on Jack, that it almost sent him into that deep sleep too quickly. Approximately 20-25 minutes after Jack would fall asleep, The Lully, which was a mechanical device plugged into the wall that sat under his mattress would vibrate until it felt a movement reaction. It wanted to wake him ever so slightly so that he moved on his own, interrupting the fall into deep sleep. Within two weeks we saw 70% less night terrors, and by a month in, they had basically disappeared. I will say, that on the days we forget to do it, or don’t get the timing right, he will have a night terror, at which point I just prepare for a tough night- but we’re keeping up with it for the time being.

Our sleepless nights with autism have been more frequently during age 4, because the twins are growing so quickly. Each time they go through a growth spurt, we see more sleepwalking from Jack, and more frequent episodes of night time hangouts from Luca. When Luca gets up in the middle of the night, he will wrestle himself in bed until he’s figured out he just can’t go back to sleep. We’ve tried to give him more melatonin, we’ve tried to not give him an iPad - but he wakes the whole house up, we’ve even tried putting him in the car and driving him around until he would fall asleep. CRUCIAL problem with that last one, is usually it’s me driving him around, and not necessarily safe to do on my lack of sleep. So I’ve learned what works best for he and I is to go to the guest room downstairs, get him a snack to fill his belly, give him his iPad on low light and low volume, and even put a movie on in tandem, riding it out until his body can rest again. Sound miserable? It is, haha, but it’s all we can do right now. It’s not his fault. His brain is going a mile a minute when it happens. Typically it’s when he’s getting sick, going through a growth spurt, learned something incredibly interesting/inspiring the day before and just needs to learn more about it on his iPad, or when something traumatic has happened the day before and it’s upset him to where he can’t sleep - OR, his brother woke him up with sleep walking and now he can’t sleep again. The joys of sharing a room.

Lessons for those going through this, or something similar?

1. All kids are different, and so are their sleep cycles. If you have a kid who sleeps through the night- kudos! Don’t rub it in, and don’t judge another parent who isn’t getting sleep. If they ask for your advice, cool, but otherwise, keep it to yourself, smile, and find the best empathy you can muster.

2. If your child is having night terrors, and research it further if you aren’t sure, consider the method the Lully provides. Message me and I can connect you with more research, but it made a world of difference for Jack!

3. If your child is of age, and on the spectrum (or not and just having a hard time with falling to sleep) talk to your pediatrician about melatonin. It was a GAME CHANGER for us. And for those of you using it and pretending your not- you aren’t helping anyone. In this case - open your mouth, share the truth, smile, and muster the greatest amount of empathy you can.

The good things that come with this lack of sleep?

1. Last year, I wrote a book, about surviving the first year after diagnosis. It took an entire year, but every morning when I was up for a few hours at a time, I wrote a chapter (or two) and accomplished a personal dream. (Not published yet, was told I needed to establish an audience - so thank you for being here and helping me inch closer to this dream becoming a reality.)

2. I’ve seen more sunrises in the last year than I had in my lifetime combined, and each time I see one, it reminds me of when my wife proposed at sunrise, one cold September morning, on Race Point Beach in Provincetown, MA. It was a magical moment, one that I don’t remember the details of, but that the same muscle memory of watching that sunrise brings me back to, warming my heart to the 100th degree.

3. I’ve shown up, for my family, time and time again, for what they need, when they need it. It sounds silly, but it’s something that matters to me. I’ve made sure my wife doesn’t feel what sleep deprivation feels like unless necessary. I’ve made sure to not shame my kids when something out of their control is keeping them from the rest they need.

4. Lastly, I’ve learned that if I can do this, if I can function in all capacities of my life, undergoing what is used as a significant form of torture in some countries, then I can do anything I set my mind to. That every action I take is a choice - and mine alone. Despite how FLIPPING TIRED I AM, that feels pretty amazing.

My view this morning, March 1, 2020 - no filter…

Not quite sure who will read this, as it’ll get posted at 6:30am on a Sunday morning- not a great time to attract readership, and for most who don’t know what it’s like to have a child up in the middle of the night, I would assume this sounds like whining. I promise you, that is not my intent. My goal in all of this is to spread awareness around autism through the eyes of our journey, and THIS… THIS is DEFINITELY part of our journey.

Let’s just hope that they either grow out of it - I’ve heard at age 5 it settles down but who knows if that will be our case - or I get really amazing at operating without sleep. :) PRAYING for the first one.

Enjoy your Sunday ya’ll! And hey… leave a little love if you could. I could use it today. If you don’t want to share this post on social media, I completely get it. But if you’re enjoying the blog, and think someone you know might enjoy it too, I’d truly appreciate a share of the main site: www.twinningwithautism.com. Thanks in advance! And sweet dreams… xo

Hey, Family!

When I met my wife, particularly when I first began to meet her friends in NH, I learned what the word “family” could really mean. In joking, she and her friends, would use the expression that someone was “family” if they identified a fellow member of the LGBTQ community. Now yes, the word could have so many inflections, that would be far more entertaining in a podcast - ones for if they thought they were attractive “family” or blatantly “family” - you catch the drift. But the concept was one so many of us our community related to, held on to, and tended to find comfort it. It was about recognizing your fellow brother/sister/human, who may or may not have lived through the struggles you did in owning your true self; who know what it feels to avoid glares of judgement or scrutiny; and who knows what it’s like to make daily decisions around how to live your life as “other”. Basically, it was almost like the “jeep wave” for the gay community - the head nod of acceptance - the instant awareness that you aren’t alone - better yet, you aren’t invisible, and I SEE YOU.

I took my kids to the playground this week, in desperate need to fight the challenges of February vacation where the lack of routine was driving them stir crazy, and their muscles desperately needed to move in the fresh air. It was 9am, so early enough, and much of the playground was still strewn with melting snow. Forty degrees and comfortable, we trekked through the snow to enjoy the swings, the climbing structures, and the many slides. Their cheeks beamed with happiness as they flew down the slides, and let their boots fly through the air as they swung back and forth. 

About twenty minutes into our fun, another family pulled into the parking lot. Two young boys, just slightly older than mine, raced to the playground, as desperate as the twins to soak in whatever sunlight would grace our presence that day. Jack’s eyes watched eagerly as they headed to the climbing structure the twins had ended up on. He looked to me for guidance, and I encouraged he introduced himself. Delighted to have the encouragement, he headed over to the boys and said, “Hi, I’m Jack Y.” - yes, stating only the first letter of his last name, as there is another Jack in the classroom and clearly this is how he is known with his peers. The boys looked at him, but when back to playing together. He tried again, and began to keep pace with them as they climbed to adventure down the slide. 

I was helping Luca climb to one of the higher more adult slides. I wasn’t able to get to Jack right away, because the ladder was slippery from the snow covered boots, and I needed to ensure he safely made it to the top. Jack left impatiently my side, and walked over to the bench, sulking sadly. I took a minute while Luca went down the higher slide, to let him know I would be with him as soon as Luca was down with this one activity, but that I needed to keep him safe because it was slippery. He nodded, understanding, and then looked to his left where the other boys mother had come closer with their younger sister. I smiled, waved, and she said hello. I went back to help Luca one final time, and then all four of our boys headed back toward the swings. 

We got to talking, and she shared that her son was on the spectrum. In return, I shared both my boys were, and she kindly admitted that she had heard how I talked to Jack about needing to be there for Luca in a way that she recognized. Apparently, my behavior felt familiar to her as well.

Her openness in that moment was a “Hey, Family”, and such a comforting one. I had forgotten what it had felt like to be recognized like that by a stranger. We talked for a while as the kids swung on the swings, even exchanging contact information to invite each other to group outings where many mamas of children on the spectrum get together to support each other. Soon, my boys were done, and it was time for us to go. I thanked her for her conversation, and said I’d be in touch soon. 

After I had gotten the twins into the car, and into their car seats, I sat for a moment in the driver’s seat, waiting for the DVD player to load, and just enjoyed that feeling. Since parenting autism, in the months after diagnosis and behavioral patterns have heightened to where my sole focus tends to be on my littles who never stop moving, I feel like there have been times I’ve forgotten to look up for adult human connection. When I’m at a playground with my kids, I’m more worried about what noises may trigger Luca, or if he’ll be patient enough to wait for another child to make their way down a slide, before plowing in front of them, unwilling to wait his turn- or worst, if he uses physical force to make what he wants possible, possible. I had coached Jack that morning to say hello to the new friends at the playground, and although I had looked up to be polite to the other mother- had she not approached me, I’m not sure I would have looked for that connection. Such an important reminder for myself, because those few moments connecting with another parent who wasn’t judging my children, or my parenting, gave me such comfort that I was not alone. That she too, had been wrestling children all morning, and knew the need to risk any snow potential injuries just to get growing boys outside to use their muscles.

Any chance we have to be seen, and to see others, without judgement, and in appreciation for our true selves, is a connection that should not be missed. Hopefully next time, I might be able to provide that to someone else in need… just a little “Hey, Family. I see you. We’re your people. You’re safe here.”

To the following groups in which I feel like I belong, in case you need to feel seen after reading this:

To the parents of little human beings who are trying to work full time: Hey, Family!

To the parents raising magical children with special needs: Hey, Family!

To the women who love the bodies that gave them their babies, but would love to find their body before babies again: Hey, Family!

To the spouses of entrepreneurs who are kicking ass and taking name with their careers, and in support of their achieving their dreams, you are picking up some of the slack at home: Hey, Family!

To the spouses who are trying to make sure their marriage is still a priority while raising a family, and after doing 10 loads of laundry, dishes, cooking, cleaning, etc (the list goes on) still work to make sure their spouse feels like the most important part of their day: Hey, Family!

To the dreamers out there who are constantly working to achieve those dreams, and willing to do whatever it takes to make them happen (for me, become a published author): Hey, Family!

To the members of the LGBTQ community, at whatever stage of happiness this life finds you: Hey, Family!

To the LGBTQ parents who are raising their families in a day and age where although accepted, the constant need to teach and educate those around you can feel like an additional job all in itself: Hey, Family!

To the LGBTQ youth, still trying to figure out your truth, own it, and be safe in owning it: Hey, Family!
*WE SEE YOU, WE ARE HERE FOR YOU, and I PROMISE YOU- IT DOES GET BETTER.

Feel free to shout out your “family” in the comments, or in social media in a share. We all deserve to feel supported, safe, and a part of bigger. XO

Can't vs Won't

Can’t vs Won’t…

It was a typical Saturday morning, wrestling kids over scattered toys in the playroom... too lazy to get out of pajamas, but full of pent up energy as the cold winter weather continues.

The house was a mess, and the playroom looked like it threw up all over itself. Luca was in search of something, but couldn’t communicate exactly what. I followed him out into the kitchen, as I watched his movements become frantic. Asking him if I could help, he replied with “bink” and I said “Ok,” but took a minute to grab a few toys on the floor in the other direction, so I could put them back in the playroom when returned to it, trying to be efficient with my efforts (because when are we not picking up toys!!!). It took a minute too long because when Luca saw that I said I would help, but my actions and body language told him I was saying no, his frustration overwhelmed him for being ignored. As it quickly bubbled over, he turned to notice his little sister walking toward him, pacifier in mouth (unconsciously rubbing it in his face), which set him over the edge. Before we knew it, he went to pull her hair to tell us how mad he was. He pulled so hard that when we separated him seconds later, strands were in between his finger tips.

After calming them both down, getting Luca his bink and putting him in a safe space while being held, comforting Alex separately, apologizing that we couldn’t protect her from just walking through the kitchen, Steph and I looked at each other scared. Luca’s aggression has peaked lately, and his go-to when frustrated is to pull hair. Poor Jack gets the brunt of it. And I can’t imagine how hard it is to be in Luca’s shoes where he has not found the words or understanding on how to safely express his feelings or ask for help to meet his needs, but watches both his brother (who used to share his struggles) and his little sister do so with ease. But as his parents, we are at a loss too. We don’t know how to give him what he needs as we aren’t trained in ABA or therapies to teach a child with learning disabilities to communicate. And what’s harder, is that Luca has the strength of a 5 year old (kid has a six-pack and is crazy strong) but the communication skills of a 2 year-old. Have you ever felt like you were trapped in the wrong body? Poor kid feels it to the extreme every day. 

To try to explain it another way… when we’ve worked with Alex over the last three months, since she begun discovering her sea legs, and becoming incredibly mobile with her sassy waddle, we’ve constantly been on the look out to ensure she avoids all corners to tables not realizing where her head now reaches. As she’s learning to navigate this world, we are constantly working to make her aware of the dangers around every corner, while letting her ride without the training wheels.

When I think of how this relates to Luca… his learning delays almost required him to live life with training wheels permanently attached for the time being, despite that he feels ready to fly without fear of eating pavement - not because he won’t… but because he can’t. He will be five years-old this summer, and his sister who hasn’t even reached her two-year-old birthday, knows how to express her emotions through words with more direct intention than he does. When Alex is sad, she screams, cries and asks for help. When Luca is upset, he bottles it up, holding it in, until he can’t hold it in any longer and it explodes out of him. As he is so introverted, we can completely miss for how long he is frustrated for until it’s so evident that we are in “danger” mode. In the moment it will feel like he’s acting out for no reason, but afterwards, when we retrace our steps, we realize that had we been paying better attention, we could have seen it coming, and more successfully prevented any hurt caused from our lack of notice.

Let me remind you. Luca’s magic is the love that bursts out of that small sweet heart of his. He can be the sweetest, kindest, most caring child. Our son is not a mean or vicious boy, but as we are working to give him the skills it takes to deal with the massive emotion that drives such aggressive acts, we are struggling with remembering and recognizing this one key factor of can’t vs won’t. In the moments we can realize that it’s not a situation of won’t - that he won’t just simply be kind to his sister, or won’t be more patient and trust that I’ll be with him as soon as I can, it gives us the perspective to remember that at this moment in time, he simply can’t be kind when his emotions are erratically racing through his body causing his temperature to feverishly heighten, and can’t wait any longer because maybe this is the 10th time he’s had to compete with two other human’s demands from his mother and at this moment he is tired of waiting. In those moments when we are patient and find grace to breath through any frustration we are feeling with the spiral of effects from this poor child’s moment of defeat, we are able to remember what we can’t vs won’t do as his parents. In those moments we are able to focus on the fact that as mature adults with learned perspective, if we don’t address him to let him know we hear him, it’s not that we can’t be the parents he needs, it’s in that moment, we won’t be the parents he needs, and so we choose to be better. We choose to keep paying attention, keep trying harder, and keep learning what he needs, even if those needs change daily.

We’ve been told by others to discipline the behavior, to put him in a time out, or simply “require more from him.” But I share this because it’s a perspective that may change the way you look any human behavior - understanding if someone can’t vs. won’t in the moment, can help you better determine how you could/should/do react in return. If Luca were to go in a time out, he would laugh- because he laughs when he’s sad or scared. It would not resonate with him, it would have the opposite effect. And heaven forbid he were to be “disciplined” - it would do nothing more than show him that violence is an acceptable response to unwanted behaviors. We can’t expect more from him at this moment in time. That little boy works as hard as he can day in and day out at school with his teachers and friends, and at home with his parents and siblings.

So, we choose to instead, meet him at his level. To remove him safely from the opportunity to hurt someone further. To make sure he knows we weren’t ignoring him and that he has our attention to help calm him down, for as long as he needs. To ensure his sibling(s) are safe from allowing the situation to escalate. Yes, there are times this feels impossible, this weekend being one of them, as Alex felt defenseless, and like a line we weren’t willing to let him cross yet. But in that moment, when we battled our own emotions, we relied on each other to hold ourselves accountable to remember can’t vs won’t.

Because we can be better parents. We can choose to take time to learn more about our son, and everything that he is, not just a diagnosis. We can pay extra attention to his body language, and ensure that when he asks for something, remember that he only asks if he really needs it, so to give it the importance it deserves.

Remember, behavior is communication. Just because someone isn’t using words to speak, doesn’t mean that you can’t hear them, it means you won’t hear them, and are choosing not to. Choose to listen.

Believe in their Magic...

This past weekend, we did not venture out for any adventures with autism… Instead, we stayed home and tackled the following projects: saved a squid from a toilet drain that has been out of service for over a week in the main bathroom downstairs; rearranged the kids playroom, including building additional storage for all of their toys and mounting a new smart TV to the wall; and replaced the washer/dryer that’s also been out of service for over a week.

Some time during the weekend before last, Luca had been watching the scene from Finding Nemo/Dory (can’t remember which one it is) where they get flushed down the toilet to escape. Thanks to YouTube, he became fixated on needing to set many of his friends free to the ocean, and although some of the smaller figurines may have enjoyed the quick flush to places unknown… two squids that were approximately 2”x5” did not fair quite as well.

It was a Saturday, and Luca had proudly been showing his Granny and Pop Pop all his friends, because every Saturday they save our sanity by coming over to help entertain the kiddos during the two-day break from school routine, and most weekends even let Steph and I get out of the house kid-free for a few hours to grab dinner and bring them home take-out (it’s glorious!). Luca had just shown his squids, that are meant to be played with in the bath tub, and then took off with conviction towards the bathroom. In the past he’s loved to wash his toys in the bathroom sink with warm water and soap, so we didn’t think anything of it… until we heard the flush. I swear, the hairs on the back of my neck stood up. I looked in his direction, and then back to the three other adults who didn’t seem to be quite as concerned, before rising from my seat to investigate what may have lost its life to the porcelain swimming pool.

When Luca exited the bathroom empty handed, my heart sunk a little. Nervously I entered where he left, but found the toilet seemingly unchanged. I took a breath, shrugged it off, and exclaimed to the others “Luca is flushing toys down the toilet, no one leave him unattended.”

I can’t remember what then distracted me from my own demands - I think someone needed diapers to be restocked from the basement - but for the 60 seconds I was downstairs, despite that Granny had picked up on the not leaving Luca alone, and followed him only trailing behind him by 20 seconds or so as he darted toward the bathroom to exile another friend - a second squid made it down the toilet. I came up to her laughing saying, “another one bites the dust” and I thought to myself- no way is that going to be good.

We ensured he was not allowed in the bathroom solo for the rest of the evening, went to the extreme of putting a child-lock on the seat, and kept an eye on the toilet which appeared to be unharmed during the mission. We even went to bed thankful that night that it wasn’t one more mess of collateral damage that we’d have to fix due to YouTube teaching our children how to do something destructive.

But the next morning, the first flush at 5am shattered all dreams of a completely unsuccessful mission, as the bath toys that Luca had flushed, had begun to float toward the surface, clogging the toilet. No need to share with you all the dirty details, but that Sunday afternoon we went through TWO snakes trying to get the squids out. The first snake was a VERY old snake from my in-laws house, which in retrospect I wish I had had more sense to realize a really old toilet snake only means one thing - it was used in toilets prior to now- so I highly suggest buying a new one that’s at least only been used on your toilets (if you get my drift) - and then the brand new one that I went to buy at Home Depot after trying to use the other one for a solid thirty minutes, not finding any success, and just pretty grossed out.

Like most battles with fix-it-esq home maintenance, I exhausted my every try, and lost miserably. And then, my wife, entered the battlefield of our bathroom, spent less than five minutes trying to work the snake, and proudly whipped out the first squid. It seriously felt like one of those situations where you work all your strength trying to open a jar of pasta sauce, only to hand it over and have someone release the cap with ease, to which you defend your honor with a “that’s because I loosened it for you”. Yea. As she held back her grin, despite it’s need to beam ear-to-ear in satisfaction, I found every ounce of energy I had left to sass back at her with the reminder there were two squids missing, and she had only found one.

After maybe another 20 minutes realizing she was never going to get it, we commissioned the first floor bathroom out of order, and went back to our Sunday. It wasn’t until the very end of the week that we were able to revisit fixing the porcelain throne, because it required completely removing the toilet, and Steph’s dad’s help. Wouldn’t you believe it though, that the moment they got it off, this is what they saw?

I swear he’s laughing at us.

The following day, we decided it was time to put together the storage that had been sitting in our basement, to get the kids playroom to the next level. Two additional shelving units, and a TV with mount, meant that at any given time, both Steph and I would be occupied without the ability to entertain a twin while the baby napped. Yes, every instinct I had said to wait until a day when we had an hour while kids were elsewhere, but we had done that for over a month at this point, and it was time to listen to the amazing Mel Robbins, count backwards from 5 and just get the job done.

Yes, it had it’s moments of stress, but Steph’s willingness to teach the boys how to use her power tools, proved to be the highlight of the day. Even Luca wanted to try, and did so with great patience and attention - two qualities we are strategically working on with him. I was doubtful of his ability to be gentle while working on the television- convinced he’d step on it, or get mad and throw the drill at it, but he listened so intently to Steph while she took the time to teach him, that he surprised me. We were able to assemble both bookshelves, mount a new tv, get rid of extra toys they don’t play with, and make more space for them to play.

It was such an important reminder for me that it’s important to keep giving the boys opportunities to prove all doubts wrong - at least until my muscle memory gets rid of all doubt, remembering that only celebrating their magic isn’t good enough - I have to BELIEVE in their magic too. If I’ve learned that part of Luca’s magic is having a heart of gold, and how that fosters his need to take care of who/what matters to him, and belief in doing “whatever it takes”, than I need to remember to think 5 steps ahead at what that could mean for expensive home maintenance, celebrate how beautiful that will be for him when his relationships of importance grow from small figurines to life-changing individuals, but also believe that his small little heart can love so fiercely that nothing will hold him back. **SIGH** I do feel like that heart of gold may actually cost us some gold as his imagination becomes more adventurous, but boys will be boys, right?

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.

Three Strikes and Birthday Parties...

I’ve found that every weekend lately, I’m learning something new about how our family functions with autism. And as the twins are of the age where their friends are all having birthday parties, many weekends are dictated by who is celebrating what, where the event is, if we think our kids could handle it, and if it’s worth all of the domino effect that it will inevitably put into play by attending said friend’s celebration. Yes, I will admit that there are many “school-related” birthday parties that we politely decline because of this domino effect that can require a week’s worth of clean-up due to sensory overload and an overwhelming anxiety attack for the twins that sends them so far off the irregular edge that regularity can literally take days of a routine to remind them, calm them, and re-regulate them. But when one of your best friends is celebrating a birthday, even though it’s at one of the least friendly places for children with autism and sensory issues, you figure out how to show up. 

Towards the end of last week, as Steph and I were gearing up for whatever the weekend would entail, she noticed the birthday invitation reminder on our fridge, and asked me if I thought we should ask our old Nanny to come with us, so we could be 3 vs 3 (three adults vs three kids). Typically, I would have said yes, but for some reason (Insert FOOT IN MOUTH and KICK MY OWN BEHIND), I said, “Babe, these are our people, we will have plenty of friends who can help if we need it. Besides, the kids will follow J & P’s lead, like they always do.” I’m not really sure why I was so confident, as I’m usually far more aware. And, as the very open helicopter parent, my wife just assumed because I said it would be ok, then it would be. This wasn’t just another friend’s party, this was our very best friends party. We would know everyone there, including all the extended family. Our boys knew their extra “uncles” and “aunts”, who were all friends turned into chosen family because of our friendship with the parents, and we knew they knew our family- so we knew if we needed help we could ask. But this, this decision to not bring extra help, would be my Strike One. 

On Saturday night, Jack was having a hard time wanting to go to bed, so I reminded him that his friend J’s birthday party was the next morning. He LIT up, saying how he was going to hug her and sing her happy birthday, quickly getting into his pjs and tucked under his covers in the hopes falling asleep would bring him closer to celebrating her. He woke up that morning, cheerful and practicing singing, in great anticipation for the party. (Thank goodness it was a 9:15 am party or practicing patience until an afternoon event may have been pretty trying for a Sunday!) He even shared with Luca and Alex about our special trip that morning, and they all practiced singing together.

When we pulled up to the parking lot for the party, we noticed our friends standing outside, hands and arms full of bags, waiting for the event venue to be unlocked. After a few moments, when they were allowed inside, we headed in as well. Cowabunga’s is a large indoor play area, with plenty of jump houses, a maze, some party rooms, and then games, etc. As it would not open to the public for another hour, the music was on low, and there weren’t more than 20 of us inside yet, providing a very low key for our kids to start their morning off at ease. They ran after the birthday girl to play on the maze structure with glee.

I’m not sure why for a moment I stepped off my game, but I saw the stress on my friend’s face, looked to my wife for the nod of the go-ahead, and jumped in to offer my help. The cupcakes had toppled over in the carrier, the cake topper had been forgotten at home on the counter, and she looked at me and said “I may need you to…” to which I immediately I nodded and said of course! She handed me the cake mess, extra frosting, paw patrol rings for toppers, and I went to work. It felt so familiar in this strange comforting way, that I think I stopped worrying about my kids for a beat. (WINCE) Ya’ll… I’m a helicopter parent - there’s a reason why you don’t stop worrying about your kids for a beat - ESPECIALLY in an autism-nightmare of a location. But, I was selfish, because as ridiculous as it sounded - it felt so good to be needed by my friend. As I watched the other moms arrive with their kids - moms from the school where all their kids go together - moms who I watch their relationships with my friend play out on Facebook of all of these amazing trips that only neurotypical families could do - and I watched them smile and laugh about the same eye lashes they had tried out (which sounds so simple but always something that is very “girlfriend-esq” and something that I had missed with my friend for the last few years), I don’t know... something selfish in me wanted to be the friend who was helping with the stupid cake. So instead of checking on my spouse and three children, not doing the math calculating if more moms were arriving, so were their kids, which meant the noise level and body count were rising where my kids were, two key triggers for the twins that could turn a good situation bad very quickly, I focused on frosting cupcakes to be “that friend” who helped her friend in her moment of need. 

I may have spent a total of seven minutes helping my friend re-ice the cupcakes, throw decorations on them, and move them to the party room. SEVEN minutes. Shouldn’t be a big deal. But when those seven selfish minutes were over, I walked back into a very small enclosed space with two large bounce houses that the party had been moved into, with over 30+ kids and their parents, where it was so loud I couldn’t even think, and as my eyes fell on my wife inside a bounce house - the severity of those seven minutes sunk in. It was almost like that scene from Four Christmases (if you haven’t seen it, it’s hilarious, but the scene that played out before me of a grown woman in a bounce house was not bringing on the laughs of Reese Witherspoon chasing down a toddler for the “pee stick” she stole... it was more like in the terrifying way of if my wife is in the bounce house, something is wrong), and as my gaze followed her arm reaching to the top of this very large bounce house, there stood Luca petrified, tears pouring from his eyes over his beat red cheeks, too scared to come down, but frozen and unable to save himself from all the children pushing past him to get to the slide. I quickly felt Alex grasp my legs, and Jack yelling “Mommy” on her coat tails. My wife looked back at the sound of his voice to see my arrival and ya’ll - it was not a great look in my direction - then she refocused on saving Luca. I yelled for him, and when he saw me, he let Steph get him down, and we took our three crying children out of the room to find a quiet spot to calm down in the large portion of the facility. This, this was my Strike Two.

It took a solid 10 minutes of breathing (for everyone, not just the kids), and redirection before we all got back on track. Steph explained that everything had been fine for the first few moments, but as more and more kids had arrived, Alex wanted to keep up with the “big” kids, getting herself into the actual bounce house, which forced Steph to take her gaze away from watching Luca climb the structure, and then to find Jack as she instantly realized he had disappeared to a corner, scared of the noise and extra friends. Steph had quickly asked 6-year-old P (the older sibling of our best friends kids) to go find and comfort Jack while she worked to remove Alex from getting squashed by larger children in the bounce house.

Once P brought Jack back, and Steph had gotten Alex out of the massive blown-up structure, she began to search for Luca again. Unable to find him, she looked to one of our “chosen family” friends and asked him where I was, to which he explained that I had been helping with the cake. She gave him a serious plea to get me quickly, but by the time he had exited the room, I was already on my way in. The thing is… yes, our amazing friends there that day knew us… had been around the kids since they were born… but they didn’t really know the severity of what could have happened in that moment. They didn’t know what kind of danger Luca could have been in at the top of that bounce house if we couldn’t get to him in time. Because unless you are living with autism… unless you are parenting it during some of your children’s most scared moments, most vulnerable experiences, you can’t understand what SEVEN SELFISH MINUTES can mean.

We were beyond grateful that the staff said our kids could play in the larger portion of the space and didn’t have to go back to the small enclosed room. Another mom had headed out with her toddler as well, and so we all played together, enjoying the space in quiet. We watched the kids chase each other up and down the slides, rushing throughout the maze to play hide and seek, eventually discovering the area where they could send soft small balls up an airshaft, into a bucket, that they could eventually release like a rain shower back into the pit. This became the favorite part of the morning. 

The kids played throughout the space for nearly 45 minutes, even after it opened to the public, and families we didn’t know continued to enter the indoor play facility. We followed them in their exploration, ever aware the birthday party was continuing on behind closed doors without us, in a space our kids simply couldn’t function.

At one point, Luca entered a jump house of two large slides. He explored the area with the ladders that allowed you to climb up to the top, ever curious but too scared to climb.

Thinking he would love the large slide if I could just help him up there, I climbed into the bounce house behind him, and began to help him up the stairs. I didn’t force him, but he held on to me so tightly as we hoisted ourselves to a new height, should have been an indicator to me that he was more scared than excited. At one point, when we were at the very top, he said “No, Mommy, no” and threw his arms around my neck tightly. I reassured him, “I’ve got you buddy, it will be fun!”, and quickly slid our bodies down the slide to the bottom. When we got to the bottom, I looked eagerly at my son, expecting to see pure delight in his face, but my gaze met anything but. “All done,” he said as he wriggled out of my arms, “socks and shoes, buh bye” he finished with. That was it, my Strike Three.

And just like that, what I had expected to be an awesome Sunday, had me benched from that “mom-of-the-year” game, chasing after my son who’s fight or flight risk had kicked in and he was headed toward the door. Although I was able to distract him by the toys for sale until I could grab my wife’s attention, our morning was rushing toward a close. Once all three kids were together, Steph allowed them to look for a toy, and I reentered the private party room, searching for our shoes and jackets, and stealing a quick hug from our friends, apologizing for having to leave in such a rush. We got all three kids layered and shoes on, leaving Steph inside with Jack to pay for the prizes they got for good behavior, so I could exit the building safely, holding Luca to my hip in a way he couldn’t run away from me in the parking lot, letting our Toddler walk herself out of the party holding my hand. Half his age, our neurotypical daughter could control herself with more discipline than her brother, understanding the dangers she faced in a parking lot in a way that Luca simply can’t. When he is in sensory over load, he does not look, he simply runs. He does not get scared about a parent not following him, or not finding him for whatever reason, because he isn’t even scared about or aware of what dangers could face him where he runs. Both Alex and Jack, they look to us when they fear danger - Luca, however, merely runs from it- into the unknown. So when he is in flight mode, the only focus we can have is how to get him safely secure in to the car, until he calms down.

Jack never got to sing Happy Birthday to his friend as she blew out the candles of her four-year-old cake. The moment when we were all in the car, he realized that he missed the ever-important birthday milestone, the one he had practiced all morning to make sure he could do just like the other kids, and became very upset. We promised we’d find a way to celebrate her at another time, even offering to bake her a cake, but there was no consoling this loss for him. Kicking and screaming, crying uncontrollably, he eventually exhausted himself into silence, falling asleep in his chair.

In truth, I could understand what he was feeling. I might not have thrown a temper tantrum, but I knew what it felt like hoping we could have been there when the lights went down and the candles awaited wishes to be blown to celebrate J’s birthday. My selfish seven minutes where I just wanted to be “that friend” again, “that friend” that could be relied on to fix the current disaster, or “that friend” who was in on whatever the “current thing” was - even if it was silly eye lashes - those selfish seven minutes weren’t any different than my four-year old throwing a fit as we drove away from a birthday party he so desperately wanted to attend, but couldn’t really handle. 

I cried on the way home, sharing with my wife how sad I was about how the morning played out, admitting that I was selfish because I missed my friend and was jealous of all the other moms who were living the friendship I thought I’d eventually get to live with the person who I thought would be my “mom-person” during the chapter of raising our kids. I admitted how ridiculous I felt in being proud to have been the person she needed to fix the icing - I mean, it was ICING! How ridiculous is that?

I cried like my four-year-old cried about his disappointment of the day.  I cried as I shared that lately I felt like outside of her (my wife), my best friend was my Mother-In-Law, because she was officially Granny Nanny, and my greatest confidant because I never got out any more. I never had girl’s nights, because they always conflicted with bedtimes for the kids and the kids needed their routine in order to get any sleep, a routine that required I be present from the hours of 6-7pm. Granny watched my children every day after school so that I could continue to work. She understood that their behaviors weren’t something that needed to be “disciplined” and that my parenting wasn’t causing their outbursts, like many liked to judge when they would watch us in public places. She understands that it can take everything you have, on a night after no sleep, to be patient and be what the twins need. We don’t go to salons and get our nails done together. We don’t stop by the mall for a cappuccino and to buy a new blouse. We do drink wine together- but that’s a different story. Granny has become my person because she understands what it is to care for someone with autism in a way that my friends with neurotypical families simply can’t. I couldn’t be more grateful to have someone like that present in my every day.

Steph held my hand and let me cry as we drove home. No judgement, no longer angry that she was the solo parent during my seven selfish moments, and when I was done crying, she simply said, “I get it. It’s ok. It’s just not our life.” She looked over her shoulder quickly and said, “they need us. And you and I, we just aren’t those type of parents who can ignore that.”

Living with autism can be very lonely- for both those with the diagnosis, but also those effected by the diagnosis. As lonely as it can be, I wouldn’t change a thing about it for our family. Next time, I’ll make sure we bring a third adult. I’ll make sure I fully understand what the party structure is like. I’ll make sure I remember it’s a kids birthday party, not a girl’s night out catching up with my best friend, and let someone else take care of the icing. The wins from that day, the really important moments that I would rather focus on, are that our kids over came fears, had so many happy moments, and that Luca was able to tell me when he had had enough. It’s all about perspective. There will be another birthday party where we can do better for our kids. Where we can ensure they get to experience all of the magic of celebrating important moments with their friends, and where Jack gets to sing when the candles get blown out. 

What I learned this weekend was that despite all the challenges we knew we would face, we still showed up. Yes, we couldn’t last very long in the greater scheme of the party, but we were present in attendance for the people we cared about. Yes, I may not be the friend that could set-up all the food, but I am the friend that showed up 10 minutes early and who wanted to be who fixed the cupcakes so my friend didn’t feel alone in the chaotic panic of the moment. Yes, we had to leave early, but we lasted nearly an hour and a half, in one of the most chaotic sensory-overload locations you can think of. The photos we posted that day were of smiling children enjoying a typical childhood experience at a play place. They didn’t capture the images of Luca terrified at the top of a bounce house, or of my wife trying to juggle children while I iced cupcakes, or of Luca trying to escape through the exit, or Jack screaming and crying strapped in his car seat, frustrated he couldn’t just go back in to sing to his friend. It’s not a lie, what we post to social media, it’s the memory we want our children to remember about how we enjoyed their childhood with them. That when their friends had a birthday party, we showed up, had a great time, and made sure they knew we were there. 

And yes, I may have completely struck out, but like any amazing game of baseball, I have the most incredible teammate to rely on for support, for council as I tried to understand what I did wrong, for reassurance that it was only “one up at bat” and who reminded me that we learn something every time we are open to learn. The point is, if we teach our children anything about life, I hope it’s how important it is to show up for the people you care about, even when it scares you or makes you uncomfortable; that anytime you strike out - whether hypothetically - or hopefully, actually playing baseball/softball (because we seriously love baseball/softball!!!) - you can learn something from it, something that will make you stronger and wiser the next time you step up to that plate; and that the very best part about the game of life is who you chose to play alongside, for they show you what being a team truly means.

***For the neurotypical parents reading this, please note, the moral here is to not host your parties at venues like Cowabungas, because that is why those venues exist and 98% of the kids that day enjoyed every aspect of it. This is merely our experience in case others are getting of the age to approach how to handle birthday parties, in the hopes it can help their navigation to make it the best experience possible.

The Power of Siblings...

Just the other day, I found myself admitting to another mom that I’m not sure we would have chosen to have more kids had we known of the boys’ diagnosis before getting pregnant. The second the words came out of my mouth I regretted it. But, as much as I regretted it, it was the truth. And that truth breaks my heart because I cannot imagine our life without this little neurotypical nugget. As I continue to work with parents of children on the spectrum, I think this share is important because adding siblings can be such a crucial transition and dynamic for a family, and a particularly different one for families with “differently wired*” children.

Alex at age 15 months.

Alex was our “bow baby”, meaning she tied our family with a bow of completion. When we did IVF for the twins, we were so fortunate to have 11 eggs make it to day 5 of the process. We used the two for the twins, and then were in amazing shape with 9 frozen embryos to consider the future of our family, providing the twins siblings.

When the twins were a year-and-a-half, we felt like we were finally getting some sleep, and ready to try again. We had this SILLY concept that we wanted to get all the “hard” out of the way while it was “still hard” before we forgot what “hard” felt like. YA. I know all the parents and care-givers are laughing at that one. But you don’t know what you don’t know, right?

The first attempt at IVF was successful, but I was traveling for work, working nearly 80 hours in a four-day time period for one of our biggest events, and lost that pregnancy at nine weeks. It was a very hard loss to swallow. I knew it was my fault. I traveled across the country, barely slept, and worked on my feet for an on-godly amount of time during weeks 7 and 8. Not the smartest move on my part, but it was my job and I was “doing what I had to do”. It was a loss, and something that was very different than the 3 years and 11 IUIs that simply never took when trying to have the boys. And it was a loss that many do not talk about, because of the embarrassment, shame, sadness, and feelings of failure tied to it. But oh, the collateral beauty that came from that loss that has forever shaped our lives in such an important domino effect.

A little back story… When we were finally pregnant with the twins, my wife admitted she was curious to know what that “surprise” feels like for spouses (yes, typically the males in the relationship) when the wife gets to surprise them with the news they are about to be parents. I had concocted this plan in my head that for the second pregnancy, I’d surprise her. Now, with IVF, it’s not that easy. Especially as the doctors need legal consent from both parents of the embryos, so she needed to sign documentation, but I knew if we could just “start the process”, I could work out the shots and appointments on my own. I had even convinced our dear friend, Ashlee Rollins, to help me with the surprise. She was excited to be my partner in crime.

But life has different plans. One week Ash and I were secretly planning expanding my family, and the next she was undergoing chemo treatments for a wretched diagnosis of Cancer. During a time I thought I’d be sneaking away for “coffee with Ashlee” to get the implementation of an embryo, I was going to a hospital to hold her hand and listen to a doctor tell her she needed to understand the severity of her diagnosis, as treatment was no longer working, and it was time to accept what was ahead. Within six months of first learning of the diagnosis, we lost our young, vibrant, care-free, dependable, loyal, and irreplaceable friend, only two days after she celebrated her 24th birthday.

After she passed, I gave up thinking I could surprise Steph, knowing Ashlee was irreplaceable in that form of assistance. When I lost the first baby after the twins, I think part of me was just too bitter about everything to believe happiness could come from that pregnancy. That’s a truly wretched thing to say, but it’s the truth. We were heartbroken, and a baby that comes into this world deserves parents with mended hearts, that are full of love and ready to be actively present for their children.

After time, both required in between tries for the pregnancy, but also to where I felt like I could handle trying again, Steph and I went for a second round of IVF. We were truly fortunate, as that one took, and our family would begin to grow. The irony was that this baby’s due date would be June 7… Ashlee’s birthday was June 11, and we lost her on June 13. Yes, I’d be lying if I didn’t admit that part of me prayed the baby would be late, and tied astrologically to our friend in some way, but also knew that the chances of that happening would be so slim.

That’s the thing about destiny though… this incredible little human’s fate was to be born in June, but she intended to be “ready when she was ready”, and couldn’t wait a day longer. Little Miss Alex (Alli) Rollins Young was born to us on June 4, 2018, at 11:59am, weighing in at 9lbs 12oz (girlfriend took ALL the room those twins left behind and then some). And as you can see here… the whole family fell in love with her immediately.

During the first year Alli was with us, it was so interesting to see how each twin took to her. Luca was trepidatious, always preceding with caution. Jack, however, constantly referred to her as “my baby”, was Mommy’s little helper, always grateful for a sibling who wanted this attention. Their bond was heartwarming beyond belief. As soon as Alex could crawl, she’d follow Jack everywhere. She knew to give Luca space, but any time Jack looked for her, she’d rush to be by his side, full of giggles that seem to be endless.

These days we can find Alex and Jack playing hide-and-seek behind the curtains, or racing through the living room chasing each other, their bond continuing to grow with such adoration. Equally, however, they each fight for my attention, as Alli tends to observe all of Jack’s behaviors, repeating any she seems to deem worthy. They snuggle on the couch when they both first wake up, more mornings then I can count, and Alli will work every charming smile she can to snuggle beside him for a book before bed at night. There are days I look at them and think to myself, “oh to be loved like that, how that must feel for each of them.” And for a while, this thought would make my heart smile, and hurt in tandem, as I watched our other child watch the experience happen for his siblings, but not for himself.

Recently, however, Luca has let her play. Even when working his lines, and in his comforting and calm little world, he will allow her in. You’ll see her barrel her way toward him, anxious to see what he is so fixated on. Had she been Jack, looking to play with anything he’s playing with, we would immediately redirect Jack away to something “more exciting”, but with Alex, we let her use her magic as far as Luca will let her, before it upsets him. We know when Luca isn’t interested in her touching, as he’ll yell “buh-bye, see you later!”, or “help”, meaning he’s heartedly focused and cannot allow her disruption. But often, he’ll even let her disrupt his lines, holding back his frustration and the pain it’s causing him, just to be patient with her and let her explore. It’s like he is showing her his love for her, by letting her in his bubble, despite how painful it is for him. (Below is an early morning in the playroom, when Luca was busy forming a line of all his birds, and Alex was determined to insert herself in his world. He allowed her to play with the toys, sit near him, and even take a few birds from those he had sorted out from all the figurines in his mixed box to choose from.)

And then, just a few weeks ago, Luca began to seek her out when she entered a room, to say “Hi!” If he was awake before she was, and I was bringing her down from her crib, he’d rush to the entry gate and make direct eye contact (big deal for us) and yell “HI!!!” waving his hands at her, before turning to go back to whatever he was doing. Every night since it began, when she comes home with Mama from her day at school, he rushes to the garage door with a “Hi, how are you” automatic response, connecting eyes, and then going back to his iPad. He’s even let her lay beside him in bed during story time, a few nights when Jack has fallen asleep before his siblings, and Alex is desperate to hang in her big brothers’ room before going to her room where no other companions sleep. And lately, when we tell Alli to give everyone “love” before nap, he’ll hear the reference, and look for his sister to make sure he’s included in the rounds of kisses and snuggles she intentionally spreads around the room. His arms may not make it around her, but he will allow her to hug him, which in itself is such an area of growth.

This may seem insignificant compared to the clearly connected images you see between Jack and Alli, but this is simply incredible, and what inspired this post about the power of siblings.

Yes, Jack’s smiling face here is during a really fun play time with his sister. They were rolling around the floor laughing and wrestling, having the best time on a random Saturday morning while Luca played with his dinosaurs by himself less than 4 feet away. This pure joy she gives him is something no one else could, and something he was desperately wishing for from Luca. He has someone who is looking up to him, following his lead, naturally letting him help her and love her and need her for the rest of his life. She hugs him regularly, and gives him kisses every night before bed. She squeals elatedly when he enters a room unexpectedly, looking just for her. Their love for one another is like two pieces to a puzzle that could not function without another. It’s truly adorable.

The thing that I think, however, is that Luca is smiling too. Maybe he won’t pose for a photo in the moment. Maybe he won’t wrestle her, or cuddle her on the couch, or even give her the kisses that Jack so sweetly will when she’s fallen and hurt herself. But Luca, looking for eye contact, wanting to greet her when she enters a room, that to me is his heart smiling. She’s pulling out his need to be needed by her, and his want to be important to her. While he played with his dinosaurs only 4 feet from his siblings, he was singing the sweetest song. He played so contently, that the noise of the two playing without him did not seem to phase him (keep in mind it normally would).

Naturally an introvert, as his parents we often try to not bother him, but what we’ve seen lately around his work to be present around her, makes us realize that maybe he doesn’t actually want to be an introvert. Maybe he just needs to practice the interaction to determine if he likes/wants/needs it. His teachers have noticed that he’s even begun to demonstrate a similar behavior with classmates. Looking to comfort a friend when they are in pain, make eye contact with a warm greeting when he sees them, and even play with particularly chosen mates on the playground each day at recess. Something has awakened inside of him where he wants to be noticed, and isn’t afraid to be known. I think this has stemmed from the little girl who is slowly stealing his heart, because she isn’t going anywhere, and he was forced to fall-in love with her fearless need to simply be part of his world.

One key thing that our kids have taught me this year, watching them accept/approve and enjoy their siblings, that is there is a special power being brought into this world with other humans who are allowed to love you before they know any better - during all your innocence and learning. Yes, all relationships are different, and require effort, a give-and-take, and real work. But the sibling relationship, in my opinion, is how you learn how to be something to someone. They aren’t your parent, or an adult/elder/teacher/babysitter that requires your attention, respect, and obedience. They are your equal, your friend, your fellow “little”. They are whatever you let them to be. And like all great relationships, yes, some people are in your life simply for what you need them to be in that moment, but some people become those who define who you were, who you are, and who you will become.

Luca might be learning from Alex, things he was never willing or open to learn from Jack, but Alex will learn things from Luca that she could never learn from Jack as well. She’ll learn things from both of her brothers about the power of kindness, patience, understanding and respecting diversity, and loyalty. The life lessons they will each learn from each other they would not be able to learn in such magnitude from anyone else.

It’s true, what I admitted, that I’m not sure we would have had more kids had we known about the diagnosis prior to getting pregnant, because as parents we are beyond committed to our children, and littles are a stretch of emotional/intellectual/physical/financial means to raise as it begins with. But I could not be more grateful for the timing of our family bow, because I cannot imagine our life without her in it. If you’re parenting autism and questioning how siblings may feed new/additional challenges into the mix, or even just wondering if your neurotypical children who are so easy as a singleton would benefit from having a sibling, my only advice is to listen to your heart and let fate do it’s thing. Even on our hardest days juggling all three kids under the age of five, I still wouldn’t trade it for the world.

*Differently Wired: Taken from the INCREDIBLE Deborah Reder, author of “Differently Wired: Raising an Exceptional Child in a Conventional World”, is my favorite phrasing for the concept that our kids are part of “the one in five "differently wired" children with ADHD, dyslexia, giftedness, autism, anxiety, or other neurodifferences”. If you haven’t read it, and are raising a differently wired child, I highly suggest it! https://www.amazon.com/Differently-Wired-Aspergers-Giftedness-Disabilities/dp/1523506318/ref=sr_1_2?hvadid=78202832398504&hvbmt=be&hvdev=c&hvqmt=e&keywords=differently+wired&qid=1580762296&sr=8-2

PS: I’d be remiss to not share that I am the older sister to three of the most talented, driven, unique, and incredible human beings I could ever know. Each is extremely different, but ridiculously similar. They’ve shaped my past, defining every moment of my childhood in a way no other could; they are a pulse on my present, particularly in how I look to parent my children as I see their faces, demeanors, and characteristics in each of my children; and they will be a compass on my future, always keeping me on track but inspiring me and pushing me to move forward at all times.

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.

Today, I'm tired. But not too tired, to love unconditionally.

Today, I am tired.

Today I am more tired than usual.

I made the mistake of having one too many glasses of wine earlier this week at an important work dinner with my wife, and I am still feeling the weight of it three days later.

That night we went out, we had our old nanny over to watch them sleep while we went out to dinner. We stuck to our routine because without it, they would be lost. No one would sleep. The disruption could set them off for a full week. That’s a full week of patience, and understanding, and grace that I don’t know I could muster this week as we worked to reset them.

But this was a big night for my wife. The kind of night she waits a decade of hard work, hard physical labor, and long late evenings of extra work after those long days of physical labor, to get to. This was the biggest kind of work night she has had since we have met. So for that, you interrupt routine, at all costs.

We made a late dinner reservation, asking two of her employees to meet us for a later evening than they most likely wished to do on a Monday night. We went through the normal bedtime routine with the kids but pushed in 25 minutes earlier than we usually do. Our old nanny was helping, and although they adore her, it’s different. It’s a blip of difference which can be just enough to cause concern, or throw them off. But they did great, and we got them to bed, and headed out to dinner.

We got home after a really fantastic night, and made it to sleep around 3 hours later than I normally catch shut eye. I could have guessed Jack would sleep walk that night. I almost kicked myself for not staying up just a little longer so I could catch him and put him back to bed.

I was asleep for 20 minutes when I heard the loud thud if his feet as he walked to our room. My body knew to kick into action despite my exhaustion, and I worked quickly to get him back to bed with as little disturbance as possible.

He did this 2 more times that night.

Jack suffers from sleep apnea, and has since he was two years-old, just after we learned about the diagnosis and everything that comes with it. We tried everything to help him sleep through the night, and even had him lined up for a sleep study with a neurologist - but thinking about how taking my three year old autistic son who is scared of even thinking about going to the doctor, to stay in a hotel room, hooked up to all sorts of wires and deal with being observed all night - made me anxious beyond belief. So, when Jack sleepwalks, he walks past our windy staircase, and into our room to my side of the bed. His eyes are shut, and he is merely moving while asleep.

I can say from experience that he doesn’t remember any of it, because I slept walk for a very long time as a kid. For me, it usually happened when I was stressed or anxious. It breaks my heart to think that my little boy is so stressed or anxious that he’s sleep walking on a nightly basis. But the most important part of being there for someone who is sleep walking is to not disturb them, so I think I’ve trained myself to sleep while on alert for over two years now, which means my body never really rests.

What’s difficult about when Jack sleep walks so many times in one night, is that it becomes a pattern he has trouble undoing. It’s almost as if it gets worst unless you provide routine to remind him it’s ok. With Jack, it’s like his “lines” are emotional lines… emotional repetition of pictures that make him feel safe and secure, in the comparable way to that Luca or your typical autistic child has to line up their toys to sooth themselves. Hard to explain, yet completely the only way that makes sense in my head.

The next morning I medicated with too many cappuccinos. Pushed through the day until we made it to bed time, and the kids got to reset again. We made sure to keep bedtime routine calm, and positive, and very nonchalant, not over stressing that we were paying attention to trying to get the routine right.

But Jack slept walk 2 more times that night. Which meant my body reacted to alert wake-up interruptions two more times… simply because we broke routine earlier in the week.

And then last night, after another intentionally routinely evening, we finally began to reset Jack, and he only slept walk once.

So today, after a long running stretch of no sleep this week, as I near the end of the work week and look towards Friday, a video came across my social media feed that was exactly what I needed to hear. A fellow autistic parent acknowledge a time that was nearly impossible to push through, and the grace she found in the nearly impossible.

When I’m tired, this kind of tired, I start to wonder if it will always be like this. I should not be complaining, as the weeks when Luca is off in the middle of the night, he will wake up and be in capable of going back to sleep for a minimum of three hours, typically causing me to be up from 1am - 4am, if not later, before I can reset him for a nap before school, so there have definitely been harder weeks of exhaustion that I’ve survived. But when I’m tired, I’m not at my best. And there are days, where I’m worst than not just at my best. There are days that I question if this will always be my life. If my body will actually ever be able to rest again. If my wife and I will ever be able to just leave our children with a sitter, whether it be family member or hired help, and relax for a few hours, not worrying about what kind of repercussions interrupting the kids routine will create.

But then I think about what Jenn Jordan said in this video that brought me to tears.

She said that a time that she felt at her worst, she turned into an invitation.. an invitation to love unconditionally- meaning WITHOUT CONDITION. As a parent, how can I hold it against my child that he’s so anxious that he sleeps unsettled each night, despite that it means today I’m tired, and so tired that I’m not at my best? Oh, how grateful I am, to have gotten this invitation today, when I needed it most.

It’s a really fantastic talk. If you have a moment, feel free to watch. She’s simply lovely.

So when we put the boys to bed tonight, we were extra patient, extra playful, and extra present. We tried harder than we normal do. We used quiet and calm voices, and didn’t rush trying to get the kids to sleep so that we could go to sleep.

Jack was the last to fall asleep, and in his typical fashion, he asked Mama (Steph) to read to him, and for Mommy (me) to cuddle him, as he likes to hold my hand while he falls asleep. After he finally let his eyes rest, and his breathing became steady, Steph and I looked at each other, tearful, smiling, while we took the moment to be present in how awesome he was, and how blessed we were for moments like that.

My advice to other parents out there, working to be the best they can for their kids, is to take every invitation you are given to give that love without condition. And like this incredible woman I’ve just discovered, Jenn Jordan, be willing to laugh when it’s hard, be real when it feels impossible, find grace in the moments it takes to push through, and then - keep doing it, over and over again.

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!