All posts tagged: special needs

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.


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It Can Be the Most Wonderful Time of the Year

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.

Lilly enjoying the first official snow of our New England winter.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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