Truthful Thursday - Parenting a Special Needs Child

***Submitted by Anonymous

A note from Ellie: it takes so much courage to write a piece like this - every mother, not just mothers of a special needs child - can identify with a pang of shame about their kid.  NO comments that are inflammatory in any way will be tolerated.  This is a community of empathy and understanding, so please offer your support.  Thank you.

This morning, I drove around town looking for day cares for my younger daughter.  A few years ago, this process was very easy. Back then, I was searching for a spot for my now-3 year old, a clever and witty kid who has always exceeded any goal put before her. Back then, I bounded in to each Director’s office, declared that we needed a daycare, and was met with a welcome party. They practically begged me to enroll.

But with my 1 year old, the process is much more difficult and brings about very painful feelings of shame. My younger daughter is beautiful, smiley, and loving. She will reach out to any stranger and quickly bury her face in his shoulder. She will stand at her sister’s train table and laugh with glee at just the experience of being alive. She teaches me about true happiness. But she also has a very rare syndrome, one that causes developmental delays along with some health problems.

So at 15 months old, she isn’t walking or talking. I’m quick to say that she’s cruising, but she really isn’t. Cruising signifies gripping onto the couch and moving her way along. She’s taken a step or two, but I certainly wouldn’t call it cruising.

Today, when I met with each successive Director at another prospective daycare, I bragged that she was cruising. You see, they won’t move her into the toddler room until she’s walking. She needs to be “steady on her feet and confident.” Until she reaches that milestone, they’ll keep her in the infant room with 6 week old babies. However, sitting in an infant room all day will impede her development because she needs to learn from the older kids. But the Directors are adamant that any child who isn’t walking needs to be with the babies.

 All day long, I’ve had to explain her delay – had to reveal her syndrome. And I felt such shame. I’ve gotten way past the point of blaming her for any of this. I’ve moved well beyond those heart-wrenching and hurtful feelings of only a year ago. But I had to reveal that my child isn’t perfect. I had to explain the characteristics of her syndrome and then, upon seeing one worried look after another, had to follow-up with a happy-faced, bubbly disclaimer: “She’s doing so well though! She’s practically a typical child!” At one point, I said, “You wouldn’t even know there was anything wrong with her!”

That’s when one of the Directors looked at me kindly and said, “There isn’t anything wrong with her.”

I felt such shame. I’m supposed to be her unconditionally-loving mother. And I need someone else, a stranger, to tell me that there isn’t anything wrong with my child?

 But…if there isn’t anything wrong with her, then why did the Director then say: “Of course, I’ve never heard of this syndrome. So I’ll need to check with HR…”? Her sentence trailed off, but it’s obvious that she meant “…before we accept your application.”

I want so badly to accept my daughter for who she is. I don’t want to feel any shame or embarrassment when talking about her. But every time I have to beg to get her into another daycare, I feel that I’m explaining away who she is. I’m asking strangers for forgiveness over the needs of my own, incredibly special child.