“This is the story of isolation and freedom. I know those terms seem to contradict each other but stick with me. My name is Sharon, and I am an ‘autism mom.’ I am also a twin mom, preemie mom, and mom of three kids that are 3 and under. I’m also a tired, excited, overwhelmed, joyful, and everything-in-between mom.
I want to share our family’s experience through our daughter’s autism diagnosis. I hope to show you that while labels can sometimes be helpful, the human experience is far too complex of a picture than a few words could ever paint.
My journey to motherhood was in itself, incredibly isolating. Unable to get pregnant the ‘natural way,’ my husband Richard and I had our twins via fertility treatments. They came 2 months early and spent nearly 9 weeks in the NICU. Due to all the medical complications that often come with preemies, we remained in specialist care for 9 months.
Our twins, Lani and Libby, had severe acid reflux and GERD. They screamed constantly, hated eating, and never slept. Still, we loved everything about our two miracles.
As time passed, we began to notice unsettling differences between our two girls. We tried to never compare our twins, but we couldn’t help but see things that concerned us.
Lani would smile, giggle, and coo. Meanwhile, Libby cared more about light-up toys, and never responded to her name. ‘Just give it time. She’s a preemie! She will catch up.’ Every time I voiced my thoughts to our pediatrician, I was told to not worry. Well-intentioned, but not helpful advice.
More time passed. I went from commenting on things I observed to demanding more attention to our needs. I felt this mama bear roar start to grow deep from within me. This was the start of my autism advocacy journey, I just didn’t know it yet.
Libby got tested for hearing loss, seizure activity, and eyesight issues. It was as if everyone was searching for something to grasp other than an autism diagnosis. I knew in my gut why my daughter wasn’t responding to her name, but I wasn’t able to process it yet. So instead, we did more tests, went to more appointments, and tried more therapies. A process we started at 18 months still wasn’t anywhere near over at 3 years old.
‘She made eye contact with me, so she can’t have autism.’
‘Your daughter is ‘acting out’ because you are talking to her like a 3-year-old when really she functions as an 18-month-old.’
‘You should just tell her ‘No’ more often and make her eat when she refuses food.’
The voices kept stacking up, as unwanted opinions were continually expressed. We waited months for specialist appointments, only to be disregarded and discredited within 5 minutes by someone who never glanced up from their chart.
Meanwhile, at home, Libby began self-harming. Our days were full of her frustrated screams. ‘My child tantrums, too,’ people would say. My husband and I would just look at one another. We knew what we were both thinking, ‘If they only knew.’
Tantrums don’t last 3 to 5 hours at a time or involve hyperventilating and self-induced vomiting. Tantrums don’t lead to self-harm. Tantrums don’t occur over things like a cheerio falling on the ground, or when items placed in a straight line are accidentally moved a couple of inches. Tantrums aren’t resolved by playing the Trolls soundtrack for the 500th time that day and laying out rainbow pictures in a specific pattern.
Despite using visual aids, sensory swings, weighted vests, and anything else her therapists suggested, we felt like we were losing the ability to help our daughter. Quick but necessary pause: I want to make it perfectly clear HELPING Libby, not changing her, was and will always be our only goal.
Richard and I felt incredibly alone. Our world was very difficult to navigate. Any time we sought help, we got told to, ‘Just wait’ or had our experiences invalidated. Once the twins’ baby sister, Ellie, arrived, things went from bad to unbearably worse. Libby was okay with Ellie until she became mobile. The mere sight or existence of Ellie has caused constant turmoil for Libby.
I remember not ever being able to put my baby down, for fear she would be attacked. Feeling guilt, frustration, sadness, and loneliness on a daily basis. I had to constantly triage needs between a baby crying of hunger, a toddler who was screaming and self-harming, and my other precious daughter, who just simply wanted her mama from time to time.
I felt like I was drowning. Instead of being thrown a life vest, I was hearing that things like this were just a ‘phase’ and ‘all kids struggle with new siblings.’ Then it hit me. I had been giving all of these other voices power instead of listening to the one that truly mattered. Sure, my daughter cannot tell me her needs, YET. She cannot (yet) call for me or ask for help. But that doesn’t mean she wasn’t communicating.
It was in that most isolating moment I also found the most freedom. Libby was showing me the way this entire time, I just wasn’t listening. My daughter is so full of life, beautifully unique, and free from societal pressures. She truly doesn’t care what other people think. She’s fully herself and fully wonderful.
As an autism mom, I have an invitation to that same freedom. To stop apologizing for our lives looking different than everyone else. To ignore the voices of invalidation, or criticism. I can draw rainbows and play Trolls wherever we go and not care about people finding that odd. I can line rocks up with my daughter at the park instead of watching her play tag with peers. I can embrace my daughter does things in her own way, in her own time. She is a CHILD after all, not a milestone checklist.
The moment I ‘let go’ of trying to get others to see our world, the right people stepped in. Specialists that actually listened, and fully evaluated Libby. A team that said Libby is clearly on the autism spectrum. Even further, they told us to not let anyone try to measure her intelligence. They validated our thoughts that just because Libby didn’t respond to other people’s tests doesn’t mean she couldn’t have.
Libby is free from having to ‘perform.’ Perhaps she knew they were trying to assess disability instead of different abilities. Libby is often a better reader of people than any of us anyway, with or without making eye contact.
It was then we chose to celebrate autism, and we haven’t looked back. Our celebration doesn’t mean downplaying the hardships that come with it. We just do not treat autism like a ‘dirty word.’ Neurodiversity is what makes this world more colorful. We don’t think it’s a coincidence that rainbows happen to be our daughter’s favorite thing!
I may not get to hear her thoughts or hold typical conversations with Libby, but that doesn’t mean we don’t communicate! I get to learn a whole new language that’s solely ours. The forehead presses instead of the traditional ‘I love you’s.’ How she doesn’t really like hugs, but my arms become a crash pad every evening, and she leaps with total abandon.
Libby sees me like no one else does. She looks through my eyes, not just in them. We have our own way of connecting. We don’t need words to share our hearts. Libby has taught me to see the world in a more beautiful way! Do we sometimes still feel isolated? Of course. Not too many people actually understand the special needs world, and I am often far too exhausted to explain it.
Yet, we have found freedom in our autism journey. Freedom to be fully us. Knowing we are exactly where we need to be, no matter how far ‘behind’ others determine that is. For us, life is more like a dance than a race, a dance to a song that is uniquely ours, and I wouldn’t trade it for the world.”
This story was submitted to Love What Matters by Sharon Stone from Washington. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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