You’re not alone, special needs mom

A mom, who had been feeling incredibly isolated and alone, wrote to one of my special needs groups.

It was an outpouring of heartache and love and loneliness and understanding.

Today, I am honored to share her words with you as part of our Voices of Special Needs series.

Be sure to hear from other special needs parents, too!

I had an epiphany this morning.

And it broke my heart.

Walking back to my car after preschool drop off I saw a mom and her 18 month old holding hands while leisurely strolling to the preschool door as they waved goodbye to her older brother.

Then that mom stood and talked to another mom while her daughter just STOOD there, HOLDING her hand, never complaining or whining.

No screaming.

No yanking her hand away.

No twisting around her mother’s legs or climbing up her mother’s torso.

No picking up everything she can see or putting random objects in her mouth.

They just existed together.

And I realized….. my children’s toddlerhood was stolen from our life.

I know this mom I observed has experienced a tantrum.

Every kiddo, every adult, has their bad day.

But bad days are our norm.

My first kiddo (non SPD) was 14 months old when his brother was born, so that created our own hectic reality.

But by the time my second could walk he refused, even as a new walker, to hold my hand.

Or walk close, or even just walk.

He had to run.

He rarely does anything remotely safely. Same for my third son. I couldn’t just take them for a walk without a stroller.

And I sure as heck better have every lovie, snack, water cup, pillow, hat, glove, toy car, lego, or obsession of the day readily available if I expect to get the stroller home without a screaming, hysterical riot.

And that was just the 4 minute walk to drop the oldest brother off at school.

Those young years are so fleeting and so precious.

I’ve barely been able to enjoy a moment of them.

Every day was and is an emotional wreck of sweat inducing intensity.

To any of you who have stumbled upon a working sensory diet or life returning ABA, or even just the patience to enjoy your day, I am in awe of you.

To those of you who may need to grieve, like me, I appreciate you.

I know for myself I wonder a million times a day what I’ve done wrong.

Why couldn’t I figure this out?

But in a rational, observant moment, I can see I didn’t have that regulated toddler content with simple exposure.

My toddlers (now my Kindergartener and preschooler) crave constant input.

My middle guy is endlessly curious and habitually on sensory overload.

My youngest wants all his input at MTV speed and Hulk magnitude, but he processes everything slower than molasses.

Keeping him alive is minute to minute.

This is emotionally, mentally, physically epically exhausting.

I can’t remove that from you, but I am here for you.

I see you.

I understand why accepting an invitation to a play date is terrifying.

Or how not receiving any invitations is soul crushing.

Or how the idea of going into a store is daunting, as basically all “normalcy” is alienating.

You’re not alone.

Come hell or high water, we’re getting through this.

Moment by moment.

Day by day.

About author Aimee E.:

We are a family forging our way through marriage, education, social norms, Tourette’s syndrome (the spouse), and a rare genetic overgrowth syndrome Simpson Golabi Behmel Syndrome (myself and 2 children). I am a woman learning how to mother to 3 boys, one neurotypical and two developmentally different, all the while discovering…. me.