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, South 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, her new book, and her journey as an autism mom.
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.
So amazing. 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 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.”
Great advice! 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.
Anything else you’d like to share?
I am in the process of starting a nonprofit, Her Voice CHS, which will support girls with ASD by spreading advocacy, awareness and acceptance. More specifically, we will provide funds for early diagnosis as well as interventions for girls in need.
I’m also gearing up for a mini book tour along the east coast coming early next year, and I am so excited for everyone to see our story come to life!
Finally, you can pre-order your copy of My Sister, Lila Lee exclusively at my shop here!