One mom's honest emotional roller coaster
I’m not proud to confess this, but sometimes I think honesty is the only way for mothers to really connect. Here’s my truth: I’ve had moments where I am overcome with jealousy over another child’s disability — or "lesser" disability may be a more accurate description.
Please understand — I love my son more than I ever knew I could love a tiny human. Charlie was born with Down syndrome and at 3 years old doesn’t yet talk (although he recently mastered "dog," "ball" and "down," which are now my three favorite words). He has trouble walking, maintaining his balance and keeping up with kids his age and, very often, those much younger.
How should I feel?
Wanting things to be easier for him — and in turn, our family — isn't about loving him any less. Maybe it's about loving him even more? I don’t know the right way to feel, because I've never been where we are today. Some days, I feel selfish and self-absorbed. Other days, I feel so incredibly blessed that our eyes have been opened to so much possibility and human compassion.
In the end, I'm human. My struggle to be strong sometimes is thwarted by my brain's constant motion.
Moments creep up and wrap around my throat when my emotional guard is distracted.
We're in a grocery store. We’re in Target. We’re on the playground. And suddenly, there she is. There he is. A child with Down syndrome, but with the agility every 3-year-old takes for granted. A child with the vocabulary I already hear pouring from my 2-year-old daughter every day.
I know it's useless and even damaging to compare children. Does any parent really sit with a checklist to do that? Of course not. The realizations simply pop, like bubbles before our eyes. We can't help but see the differences. For goodness' sake, don't we do that ourselves, as adults? We know it's not healthy, but it continues.
In Charlie's world, who cares?
For now, my blessing is that Charlie doesn’t know better. He doesn’t look at the bigger, faster kids and stop to consider, "Why can’t I run like that?" He doesn’t listen to children’s fanciful conversations and look crestfallen that he can’t contribute.
He finds a way. He follows until he catches up. He learned quickly that, eventually, even the fastest kid will pause for a break. Ah-ha! Charlie swoops in for a smile and a wave.
He uses sign language (his own and conventional signs) and shrieks and laughs and smiles and waves and gestures and throws his blond, tousled perfect little head back as if whatever has just occurred has delivered the most powerful feeling of joy he's ever experienced. The children who respond with love, interest and even some help push my heart outside my chest.
I slide my sunglasses over my eyes to hide the glistening tears. I pretend my flip-flop has come untied. I practice Lamaze-like breathing that, at seven-months' pregnant, I realize is actually a completely misguided way to avoid attention.
Those sneaky moments
We meet for play dates, and a little boy with Down syndrome only months younger than Charlie rushes past, his big-boy underwear peeking from his shorts.
A little girl with Down syndrome asks her mother for a snack. With words. Like, real words.
A boy a little older than Charlie, and also with Down syndrome, sits patiently at a table, consumed by electronics and waiting patiently to touch the screen, move the game ahead, hit "play again" rather than punch at the screen unrelentingly like it's covered in bubble wrap that must be destroyed.
My other truth: I’m a horrible human being
Then there are the equally (or more so?) shameful moments where I find myself thinking, "Well, there’s one thing we don’t have to deal with," because in my misguided, naïve way, my brain can see visual differences that compute as even more difficult than our challenges.
Sometimes it's a child in a wheelchair. Sometimes it's praying for a family whose child has a chronic heart defect (common with Down syndrome). Sometimes it's the often misunderstood actions of a child with autism whose sensory issues have gotten the best of him, and his mom and the entire crowd surrounding are slowly, visibly suffocating him.
I'm not proud of those moments of selfish gratitude. Few of us parents of a child with different abilities want pity. We don't want sad eyes and reassuring pats. Personally, I want people to push past what I myself am struggling to ignore and see a little boy whose gregarious nature could humble Congress into getting along. Seriously. I bet he could.
Distracting from reality
When I see a child whose challenges exceed Charlie's, I desperately want to focus on her hair bow, her smile and her mother's inspiring grace and stature. I want to strike up a conversation about anything but what we are all trying so hard to embody — life is tough, but there’s only one direction to go. Forward.
Do some of us have it easier than others? Could there be a more subjective question to ponder? Everyone has something. Visible somethings. Invisible somethings. Barely-there-but-about-to-explode somethings.
Being a parent is hard. Being human can sometimes feel un-winnable (try that one out for size, Charlie Sheen). I want inclusion, yet for selfish emotional self-preservation, I seek solitude. I want my children to be happy and never feel left behind, overlooked or less than. But then I avoid play dates because, the truth is, those are all feelings I know swell within me. I ignore the reality — the kids don't care. The kids just want to play, run and see if Mommy can keep up when they bolt in opposite directions.
I've got to stop seeing those challenges and meet my child at the bottom of the slide.
Because that’s where Charlie will be waiting, happily and eagerly, fully aware that the speedy boy who took two steps at a time to get to the top has nowhere to go but down to the bottom, where his newest fan is ready to greet him with cheering, smiles and unconditional love.
And that's what his Mommy needs to keep focused on.
Professional advice and perspective
Enough from me, an expert only on writing with honesty and hiding Dunkin Donuts receipts. I asked a friend, Katie Hurley, who is a child, adolescent and family psychotherapist and parenting expert in Los Angeles, for some professional help on this matter.
Her website, PracticalKatie.com, is a go-to resource for everything children-related, and I secretly wish she lived next door. (Well, not so secretly. I might want to kidnap her one day.)
Comparisons are natural
First, she shared some perspective on the big picture (making me feel less bad about my habit of noticing differences between children).
“Parenting often lends itself to comparisons," Hurley says. "Although we tell ourselves that every child is different, it's hard not to wonder how your child stacks up in comparison to her peers.
"For parents of children with disabilities, comparisons feel magnified. Parents of children with disabilities often measure milestones in small but incredibly meaningful steps. In short, it can be a long wait.
"When other children with disabilities seem to reach those milestones first, it can lead to feelings of envy. It's easy to throw out cliches like "the grass is always greener", but when you've been working really hard on walking and two kids master it before yours, it can feel deflating."
Big hug, Katie. You always know what to say.
Tips to move forward
Hurley also shares some helpful tips that might be a struggle to accomplish but clearly can make a difference.
Being on the flip side
Now, what if it's my kid who has suddenly mastered the art of the jog or the ability to converse with actual, real, full sentences?
"If you happen to be the one who is envied at the moment, share your story," Hurley says. "The truth is that these moments hold more importance for the parents than the kids a lot of the time. The kids simply want to play and have fun and maybe get around a little easier. Sharing your journey — including the various emotions you've experienced along the way — might really help another mom and break the tension a bit."
Focus on the kids
The good news is, getting past these emotional struggles isn’t just about having Oprah-like heart-to-hearts. It's about focusing on what is best for the child, putting aside my own preconceptions or anxieties.
"Kids benefit from playing with other kids of different ages, developmental levels, and disabilities," shares Hurley. "They learn a lot from watching each other and communicating in their own ways. Resist the urge to find the 'perfect match' for your child and increase his social experiences and peer network by playing with all different kids. You are likely to see increased growth and development as your child learns from other kids.
"At the end of the day, there is no easy button when it comes to parenting a child with disabilities. Try to keep that in mind, even when other children seem to be making greater strides than your own. And never underestimate the power of humor."
This is why I love Katie Hurley. Because God knows I can’t get through this life without seeing the humor in everything. Remind me to tell you about the time my very verbal, typically developing daughter told a stranger named Jack to “hit road, Jack!”
Progress ain’t all it’s cracked up to be sometimes — proving that God, too, has a sense of humor.
Read more about children with special needs