In the Fall of 2022, Morgan Matkovic’s younger daughter Lila (now 4) was diagnosed with Autism. “Before leaving our diagnostic appointment, I asked our doctor how I should approach this new reality with our oldest daughter; more specifically, I wanted children’s’ book recommendations that focused on girls/sisters to help her understand the idea of neurodivergence,” says Morgan.
At the time, there weren’t many options—and the few that were available were centered around boys. So Morgan decided to pen My Sister Lila Lee with Lila’s older sister Madeline (now 8), illustrated by artist Betsy Douglass.
“Writing a children’s book has always been a dream of mine, so I took the opportunity to tell our story—one that champions sisterhoods, shares awareness and acceptance of neurodivergence, and spreads the universal message of leading with kindness always,” says Morgan. Previously, she created Lilies + Lambs, a blog focused on her IVF journey which transitioned into a lifestyle focus, including her family’s move from Old Greenwich, CT to Charleston, SC during the pandemic, and now, her experience parenting a child with autism spectrum disorder (ASD).
We asked Morgan to tell us a bit more about her life as a mom living in Charleston, SC, her new book, and her journey as an autism mom.
Where are you originally from and how long have you been in Charleston, SC?
I’m originally from Greenwich, CT. My husband and I both grew up there, and both our girls were born there… So it was a BIG deal when we made the move to Charleston. But we made the leap and have happily called Mount Pleasant home since September of 2020.
Tell us about your family
My husband Phil and I are both Greenwich natives. We lived in Old Greenwich for almost 10 years before moving down south to Charleston, SC in the fall of 2020. We moved with our daughters Madeline (8) and Lila (4) and our black lab, Georgia, and English bulldog, Otis. We are also fortunate enough to have both of my sisters and my grandmother in Mount Pleasant with us, as well!
One thing you wish someone would have told you about motherhood?
We are built to do hard things, and moms are innately blessed with an incredible ability to pivot. I often remind myself that just because it’s sticky, doesn’t mean we are stuck. Keep going when it gets tough and you’re in the thick of it- there is always a way to find the magic in the mess.
What’s your favorite thing about raising a family in Charleston?
I think the pace of life and culture. It’s been a breath of fresh air. We love living in a neighborhood where we can drive the golf cart to school, and then in the afternoon the kids can hop from house to house and play with their friends. My husband often takes my oldest fishing and crabbing on the crab docks. It’s all so picturesque, three and a half years later it still doesn’t seem real.
Congratulations on the new book! Can you share about how Madeline (Maddie) was involved in the process?
The book is told through the eyes and voice of Maddie, so she was an integral part of writing this book. She sat with me as I wrote every stanza. Often, she was able to describe our Lila in a more beautiful, eloquent way than I could—the way children’s brains and hearts work will never cease to amaze me. We also had a few meetings with both Maddie, Lila and our illustrator, Betsy Douglass, which I think really helped bring them both to life.
What were those first few days and weeks like after Lila’s diagnosis?
While I would say the journey was long—over a year—in the scheme of things, we are incredibly blessed to have received our diagnosis in this length of time. My initials concerns mainly focused around a speech delay, which my pediatrician brushed off as a result of COVID. I had to push incredibly hard for services and a diagnosis, as I was also told it was so rare for a girl to be on the spectrum, so she was probably just delayed.
We had a year of speech therapy and occupational therapy before we met with a private pediatric psychologist—another opportunity that we are forever grateful to have been able to do, as the wait for the developmental pediatrician was over a year. It was a grueling journey, but another one that solidified the fact that we must always trust our mama gut and keep pushing for our littles no matter what it takes.
What is the biggest misconception you’ve realized people have of ASD?
I think the biggest misconception is that there is a certain “look” to a child with ASD. I’ve had many people tell me, “But she doesn’t look autistic.” Which is just silly, because she is. And we aren’t ashamed of that fact. ASD is a spectrum disorder, so the behaviors characteristics, and levels of support differ greatly based on the level of your specific diagnosis.
Tell us more about your new nonprofit, Her Voice CHS, which will support girls with ASD by spreading advocacy, awareness and acceptance.
I’m still waiting on my 501(c)3, which has been so frustrating! Once I have that, I will be raising funds to help girls navigate and fund diagnosis and therapies. Until then, you can find me raising awareness and advocating for kiddos on the spectrum on my Instagram, blog and out in the wild.
Can you tell us more about your upcoming East Coast book tour this year?
Yes! I am so excited to be able to head up north at the end of March/beginning of April to share this baby of mine. We have a few in the works, so stay tuned on my social media channels.
What has helped you get to the point where you are today?
I believe finding the right team is the most important thing you can do on this journey. I had to trust my gut more than few times and make the hard decision to let a few providers go—pediatrician, SLP, ABA therapists—which can be an uncomfortable thing to do but is so important. But now that we have our all-star “Team Lila” we have seen her progress in droves. We are blessed to have not only family and friends that are incredibly supportive, but also a team that includes a pediatrician, child psychologist, music therapist, BCBA, ABA therapists, SLP and OT. Phew, it’s a lot. But I’m so grateful for every one of them.
What would you tell yourself a year ago?
I would say it’s okay to feel the loss of what could have been. They don’t tell you that there is an element of grief that comes with this diagnosis—and that you don’t need to be ashamed of it. My advice would be to process that and take care of yourself, because having a child with a disability is an emotionally, mentally, and physically a trying job.
But as moms, we are built to do hard things. We have an incredible ability to pivot. I often remind myself that just because it’s sticky, doesn’t mean we are stuck. And our child at 3 or 4, is not who they will be forever. There will be progress. There will be so much JOY. Keep going, you got this!
Oh, and find your tribe of other neurodivergent moms- there’s nothing better than being surrounded and supported by women that just “get it.”
Who has most influenced you to be the mom that you are today?
My kids. I had an idea of what I thought life would look like; what kind of mom I would be. The biggest lesson I’ve learned in motherhood is that sometimes I’m the one that needs to bend and change and adapt and grow to be the kind of mom they need and so deserve. They inspire me to be better every single day.
What advice would you share with a new mom or other moms?
Give yourself grace, don’t forget to fill your own cup and trust your gut always.
One thing people would be surprised to know about you?
I have fallen back in love with reading over the last year and love to decompress with a good thriller and a cup of tea. But 9/10 I will fall asleep to Friends reruns or a Bravo podcast.
We love supporting local businesses – favorite places in Charleston to…
Have Dinner with Family: Sullivan’s Fish Camp
Grab a Drink with Friends: Post House
Have a Date Night: Post House
Spend time together as a Family: Home 🙂
Outside Activities: Snee Farm Country Club, shopping Downtown Charleston, walks on Pitt Street Bridge, Sullivan’s Beach
Indoor Activities: The Works Cycle
Grab coffee: Second State, Brown Fox or Vintage
You can purchase your copy of My Sister, Lila Lee exclusively at her shop here!
Some parts of this article were originally posted on The Local Moms Network
