I hear the question pretty consistently. "He is so cute -- but is everything ok with your son?"
Throughout my journey on the parenting-growth curve, I've slipped and slid and stumbled around a number of answers.
One winter's morning at the children's hospital, I realized I needed to think a little more intentionally about when I share more and when I share less.
My son and I met a seven year-old girl in pigtails while waiting in the lobby.
Without thinking, I jumped into my awkward crash course about Child Development 101.
I stopped just short of pulling out an anatomical diagram of the brain from his diaper bag.
Our son was born premature, and it was after his birth that we discovered a number of 'invisible' brain issues, including encephalopathy, loss of white matter, and thinning of the corpus callosum.
Unless you had the MRI (or x-ray vision, which is a pretty sweet superpower), you might not guess something was wrong.
He currently looks like a 'typical' boy, complete with a dimple and messy hair.
Yes, he's unsteady on his feet and is unable to walk.
He has an expressive speech delay, but you might just think he's a babbler versus a talker.
He has quirky hand movements and facial ticks, but most refer to it as his 'happy dance.'
And he's a toddler -- so his central nervous system sensory overloads are commonly dismissed as your run-of-the-mill tantrum.
Most people don't pick up on hypotonia -- even the wagging tongue, and especially not the sluggish digestive system.
you don't have to be a 24/7 advocate of your child's condition to everyone on the street.
So, when I'm out enjoying coffee with a new friend and she asks me, "Your son is two, right? Is everything ok with him?",
I don't have to provide a ten minute lecture on the definition and prognosis of encephalopathy.
Sometimes, I actually just say:
"Let's see... we're working on taking his first steps, he is trying to prove to me he can swallow a banana whole, and he is a dictator when it comes to going to bed,
so we're working on getting more sleep at our house. What's up with your kid lately?"
It's not avoiding the conversation, or wishing away his condition.
It's simply wanting to share some coffee (jacked up with plenty of cream, just how I love it) without delving into the abyss of developmental abnormalities.
And that's ok, especially with new friends or complete strangers.
to explain more about what current life is like and what the future holds.
Many superb friends and family really do want to know 'the whole truth,' and there is a lot of wonderful peace that can come from being able to openly share your circumstances.
I'm so at peace after coming to the realization that as a special needs parent,
Find your comfort zone.
Don't feel guilty.
Adjust as needed.
And don't forget to breathe.
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