All posts tagged: parenting

Just Like Your Favorite Song

The magical moments we have with our Lil become just like your favorite song: you can’t help but play on repeat. They become a precious gift we can share with Lilly’s ever growing team of family and friends, enthusiastically living through every victory.

If you are present (and, most of all, patient), the intrinsic rewards of these moments — these seemingly impossible achievements — are the best gift to watch unfold and bloom. By presuming competence and providing opportunities, our girl is shining brighter than ever.

Our dear and beloved friends — two of the sweetest and selfless teenage girls around — let Scarlett borrow the coolest, brightest hot pink nail polish around. She couldn’t have felt cooler as she clinched the bottle so tightly on our drive home.

photo 1After a Daddy-Daughter bonding nail party, Scarlett proudly displayed her glowing toes for us all to see. Hours later, completely out of the blue, Lilly spoke the most beautiful sentence we have ever heard.

“I want on my toes color.”

Lilly’s autism may create a delay in time — a pause button, per say. The pause button holds for minutes, hours, days, months or even years. But the truth is that the pause button is not permanent.

Our Autism Angel is present, aware, listening. I noticed her staring at Scarlett’s toes all day, but it still blew my mind hearing that specific desire flow out of her mouth.

photo 2Cue nail polish party: part two. The happy hands, dimple bearing grin and ear covering humming ensued, and we cheered with delight right along. When nighttime came, I pressed her weighted blanket over her in bed, she leaned over and presented her hands, dainty as can be.

“Paint the hands.”

Every part of my heart wanted to jump out of her bed and give in, but my head knew better… “Tomorrow, sweetheart.”

Fast forward to this morning… My angel runs out of bed, climbs up with me and proudly states,

“Paint my hands.”

Yes, the pause button is short this morning. Will it lengthen again – of course. The point is to join her in her mysterious and magical world of autism.

And isn’t it a refreshing thought for us to all use that pause button from time to time?

theautismresearchfoundationJust Like Your Favorite Song
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A Most Precious Word

As a mother, you long for the day your baby can utter those three beautiful words: “I love you.”

It makes the sleepless nights and endless diaper changes seem like distant memories to most typical-raising mothers.

My path is different — changing and twisting — the end not always imaginable or clear. Lilly’s autism diagnosis led me and my husband on a journey of shifting visions and expectations that had been ingrained in our heads from the moment that ultrasound technician wrote “baby girl!”

The good, the bad, the ugly; it all shifts. I was a hands-on auntie and remember so vividly hearing my precious nephew call out for my sister when I babysat him. I would rub my belly gently, anticipating the day my baby girl would call out to me just the same.

But as unexpected as a scattered, quick-moving rain storm on a clear day, I had never imagined or prepared myself that this might not happen. And it didn’t. As a baby, and then a toddler in her crib, not even in pain or distress… Forget the happy babbling and beginning sounds of “Mama, Dadda” echoing from the bedside monitor… I just wanted that feeling of my Lilly being able to call out to her Mommy in time of need. But it never came.

When Lilly started therapy, her team took a close-up picture of me to include in her lessons. Every day, they would show her a picture of me until she could finally say “Mommy” by identifying my photo.

It may seem unnatural, but this is our world. We need to teach her in a way that she can understand. I still have that first picture and it still makes me tear up when I find her playing with it.

photo (2)Two years ago, my wonderful and caring husband made me a “Happy A Mommy’s Day” card. For about a year, Lilly called me “a mommy.” To her, I was a mommy; it makes sense. I should have been grateful, but every piece of my heart wanted her to know that I was HER mommy…

Today, I hear her soft, angelic voice say my name multiple times a day and it is the sweetest song to my ears. She has her share of pain — from GI problems to seizures — and I am forever grateful to the countless hours and years spent by her therapists teaching her the tools to begin to communicate her needs and pain to us.

My favorite line occurs in her midday therapy at home. She will ask her therapist to “go see Mommy.” My heart melts every time and I remind myself to tuck those warm and prideful emotions deep in my heart: to cherish and remember always.

On my ever-changing path of being a mom to the mom of an Autism Angel, I have learned to savor those moments as daily comforts: reminders to live in the present and celebrate her moments of joy and peace, triumph and accomplishment. Because they’re there, even if Lilly’s not saying them like we had always expected to hear them.

I put no agenda or pretense on holidays; waking up on Mother’s Day, I plan on reading this to myself and smiling, because, for the most part, it will be just another day in our autism house… Filled with highs and lows, smiles and tears, but I will be grateful and reminded of the long road it took for my precious babe to utter her first “Mommy.” And, for me, that will always be enough.

— Michelle Steiner, recurring contributor


happymothersdayWhen you’re doing your Mother’s Day shopping this year, consider a gift that gives back to the autism community and acknowledges that you see the challenges and successes of your loved one every day. Purchase jewelry from the “I See You” collection and 20% of your purchase goes to programming at The Autism Research Foundation.

Have stories like Michelle and Lilly? Share them with our autism community to inspire others as we inspire you. Email hello@theautismresearchfoundation.org to get the conversation started today.


theautismresearchfoundationA Most Precious Word
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