And then, there's Alli...

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

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

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

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

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

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

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

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

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

Our Little Luca...

Sometimes, being accepted and seen, for who we are, is exactly what we need to succeed.

This is Luca. He’ll turn 5 at the end of August, and is finishing his second full year at an amazing school in our town, where the strides he has made since he arrived take our breath away. Just yesterday, I met with his team of teachers that work with our boy for over five hours a day, five days a week, providing him the opportunity to strive as he has. (Yes, you’ve read that once before, when I described his twin, Jack, just days ago.)

As a twin, I know Luca entered this life in constant comparison to his brother Jack. When they both arrived at Moose Hill at age 3, they were given separate IEP (Individualized Education Plans), as each had separate needs. Uniquely designed goals and objectives to work to bring each child closer to a successful integration in the classroom when it came time.

Luca’s parent teacher conferences are structured differently than Jack’s, as Luca only just integrated part-time into the classroom. Jack had advanced to a partial integration last year, but fully integrated this year, which is why when I met with his team, we were able to do so in less than 20 minutes. For Luca, I set aside an hour plus, because I always know that I’ll get such wonderfully intentional attention.

My time at his school that morning started in observing behind the classroom door. Luca has trouble with transitions, particularly around when I arrive at school, because it typically means he’s sick, or has to leave for a doctor’s appointment. Although I’d be allowed to observe in the classroom, knowing he’s not quite ready yet, and not wanting to interrupt his learning, I take my place hidden in the hallway, where I can watch how he interacts with his peers.

That morning, Luca was the class helper, and was excited to invite his friends to line up. I observed how he played alongside so many friends, with a consistent noise and activity level that he seemed to work through with ease. Just last year, this would have sent him off the deep end. But there he was, working with his aid on stacking cups, identifying colors, and reading books with the sweetest smile across his face.

His INCREDIBLE teacher - yes, I know I reference the administration at the boys school with this word on the regular, and it’s not for a lack of a decent vocabulary, it’s merely that they simply are INCREDIBLE. They are angels, miracle workers, gifted human beings who’s kindness radiates throughout everything they do with our children. I am at continually amazed at how gifted these people are.

His incredible teacher shared with me all the progress he’s made, noting that he is interacting with such thoughtful connection to peers, needing to say hello to each that enters the classroom, and taking time to say goodbye to each before he leaves. (Yes, my papa is in heaven smiling down on this because his Italian grandkids were always taught you give love to everyone in the family both when you enter and exit a gathering, no matter how long it takes.)

She shared that Luca has improved dramatically with intentional eye contact, and although the scripting has been constant, his language has also come so far, and that he has begun to generalize behaviors for each and every aid that he works with - not just the ones he has already paired, bonded with, and prefer. This means that he participates in conversations, naming items when instructed, following directions for activities, and initiating requests of tacting/manding for any adult partner that he works with, even if they change sometimes on a weekly basis. For the last year and a half, Luca has steadily had a consistent aid each six months, and each relationship has been so incredibly special to him. Any time he had to transition to a new one, we’d see the ramifications and after math at home as he worked through the abandonment and the repairing. The fact the he was truly beginning to learn to trust and adjust with ease was such an amazing win!

When I ask how his aggression is displayed in the classroom, bracing myself for what I expect must come as her answer, she explains that because he has an aid at all times, they only see it during auditory overload- when certain friends have louder moments, and even then they will only see him attempt to “bop a friend on the head” - as most times they are able to redirect the behavior before it successfully connects to the target.

We discuss the differences in his behavior in the classroom, and at home, identifying that Luca definitely has auditory triggers that cause the aggression in one of the sweetest boys you could ever meet. She assures me it’s simply his frustration with not having the language he needs, and that the more we give it to him - he will learn to dial back the aggression as the communication starts to connect with diminishing the auditory overload.

We observe his behavior in the classroom for 20 minutes or so, and then go to meet with the rest of his team in the front office conference room. We celebrate how far he’s come, discussing the many achievements he’s tackled over the last year, and we strategize on how we can continue to work in parallel, both in the classroom and at home, to keep the progress steadily moving forward.

When it came time to talk about the future, we did so about both of the boys. Luca was clearly not ready to move ahead to the Kindergarten classroom. Despite that he had made progress, he simply wasn’t wear Jack was, or the rest of the peers in his age group. Being born in August, both the twins are still very young compared to peers, and since Steph and I had discussed in detail our hopes that they would stay back a year to give them the very best chance to succeed in the years ahead, I made the ask. I had plugged the hope during Jack’s parent teacher conference, but was now sitting with the chance to really solidify the reasoning behind the hope.

We don’t want to separate the boys, even though we think it’s wonderful that they are in different classrooms. Where Luca is externally displaying delays, we believe Jack is internally displaying them, and think they both could benefit from another year in this amazing program. I’m not sure what they’ll decide, but fortunately will know soon enough, as both the boys IEP meetings are this spring, where all members of the team for the boys, including their teachers, administrators, and us as their parents, will work to design what the next year of their plan looks like.

What a gift, to be given a team of individuals that wants nothing more than for your child(ren) to succeed. Truly, what a gift.

I know I noted that Jack will make friends anywhere, despite if our holding him back will require a different classroom with new friends. That is his magic.

For Luca, our little Luca, we’re still learning about so much of his magic, particularly the love that lights his heart about the things and friends he cares about. Right now, Luca loves all things to do with the sea, particularly sea animals. He can name EVERY animal that lives in the ocean, and even some in different foreign languages (thanks, YouTube). In the next year, I anticipate that Luca will find the words. He’ll find the words to replace the aggressive behavior that comes from not being able to say how you feel, when you are so lost in frustration you don’t know any other way out. In the next year, I think the sweetest little song that is in his heart will fill with the lyrics of not only his current favorites: Mulan’s Reflection, Elsa’s Show Yourself, and Tip’s Towards the Sun; but of songs we have yet to hear that will capture everything he feels in his own words. Music is where his heart soars in song, and one of the first ways he was ever able to communicate. We can only hope that he holds onto the love of song for years to come.