Michelle and Lilly Steiner | The Autism Research Foundation

Just Like Your Favorite Song

August 19, 2014

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.

After 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.

Cue 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?

A Most Precious Word

May 1, 2014

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.

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

When 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 [email protected] to get the conversation started today.

Batman Saved More Than Bedtime

December 30, 2013

When we moved our family almost 3000 miles away from their cousins, I knew the separation would be hard.

My girls and my sister’s boys have grown up together since birth. They love Lilly for who she is and have never seen her as any different than that. After a horrific trip home this past summer, I soon realized flying across country with my autistic angel just might not be in the cards for awhile.

How was I going to keep the connection going?

My angel loves watching pictures and videos of the boys, but never asks for them or does more than a whine and then kiss on the phone. I just had to keep the faith to talk to both my daughters equally about their boys in California, show pictures, tell stories. One of the difficult aspects of autism is not knowing what their minds are absorbing. I know my Lilly is extremely bright, but it’s never easy or normal to not receive answers to questions we try to ask her.

A couple weeks ago, I was blessed with a sneak peek inside her precious mind. Every day around noon the doorbell rings, and I prompt Lilly to go answer it. It is always one of her amazing therapists arriving for her in-home ABA therapy. On this day, she pranced through the hallway, long legs and tip-toes as always, but cried when she opened the door. To my complete and utter amazement, she whined, “No Miss __.” “Dane! Dane!”

There it was. More than a year from moving away, she asked for her adoring cousin. I immediately jumped on FaceTime with my sister so Lilly could see his face, but more importantly so my nephew knew she was here, asking for him. I ran into the kitchen, grabbed his proud soccer picture from the fridge and put it in her therapy room. My gut told me to keep the momentum going. I felt this strong urge to hold onto this seemingly unimaginable moment forever.

She has not asked for him since, but found a Batman mask given to her by the boys on our trip home. Lilly had regressed on that trip — humming constantly, little to no language, wandering — and the only thing that seemed to calm her was the mask. It acted as a comfort, an escape: heartbreaking and adorable wrapped in the same breath.

Of course my generous and loving nephews let her keep it.

Lately, and, honestly, most of her life, Lilly’s bedtime routine has been a nightmare to say the least. So last night, when she insisted on bringing the hard plastic mask to bed, I didn’t flinch. Anything to calm her and not cause aggression and a meltdown, I figured.

As if she was recalling a memory, my sweet girl slid the mask on, smiled one of her room-lighting, angelic grins, and peacefully closed her eyes. My heart sang: confident that this one simple toy is serving as a link, a physical connection to recall her memory of time spent with her boys.

Most people wear a mask to keep the world out, but Lilly wears hers to let the world in. I bet Batman never knew he had the ability to save a little girl like this.

It Can Be the Most Wonderful Time of the Year

December 10, 2013

The holiday season is upon us in full swing. Family calendars become full with school functions, family gatherings and church services. All are meant to spread peace and joy further, yet the opposite occurs in our family. My 4-and-a-half year old daughter — my angel, Lilly — has autism. The cattle herd-like shuffling in winter coats from unfamiliar place-to-place proved a nightmare for her. I strategically planned my holiday outfits around needing the ability to lunge through the air to stop her from opening other children’s presents at homes and the decorative display presents in shops.

After the 3rd year of this madness, performing our family’s rapid “fire drill” exit just 10 minutes after arriving at a family Christmas party, we called it quits. Through tears and sobs by the entire SUV, we declared we were done: going “off the grid” as my husband declared on Facebook to be exact.

We soon realized that as much as we needed a time out to stop the madness of this horrific nightmare, it wasn’t the right solution either.

Now, in our 4th holiday season, we have a game plan that suits our family’s needs. Just like the beautiful snowflakes that fall — unique in their nature and appearance — so are our angels with autism. Listening to her needs, verbal or not, makes for a better holiday season.

I offer to host at my house, or accept an offer to a house or place I know my daughter feels comfortable in. We say “yes” to morning and daytime activities, and a big fat “NO, THANK YOU!” to nighttime parties and functions, for now. We have shifted our expectations and feel at peace with them. If my husband or younger daughter really want to attend a night function, we split up, and one of us stays home with our Lilly.

For me, the joy of the season looks like this: Watching my daughter hang her own Dora ornament on her 2-foot-high tree. It’s letting her use our Christmas cookie cutters to mold Play-Doh instead of help her younger sister and I bake Christmas cookies. And it’s about vetoing the Elf on the Shelf for another year because she won’t understand it yet, and that is okay with me.

— Michelle Fulton Steiner

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