Is Different a Disability? Thoughts of a Troubled Mother
Ever since Syd* was a newborn, I knew there was something different about her.
I don't mean different in the sense that she's more beautiful and intriguing and brilliant than other children--I'm her mom, so of course I already know that. But what I'm talking about here is the little red flag waving in the back of my mind with the word "Different" emblazoned across the front.
And I'm not talking about different in the sense that she doesn't act and talk and look like everyone else. I'm not into conformity. What I'm talking about is the Different that results in suffering, anxiety, and pain.
Frankly, I wish that red flag would go away. But every time I tear it down, there it is the next day, waving freely. Now that she's approaching her third birthday, it's getting to the point where I can no longer dismiss my worries as irrational thinking.
She's just shy.
She's an introvert like her mom and dad.
She's a sensitive person.
She'll grow out of it.
But are these things true, or am I in denial?
Itty Bitty Challenges
It began soon after my little one first came home. I didn't get much sleep when Syd was a newborn. I don't mean the typical, get-up-eight-times-each-night-and-early-in-the-morning sleep deprivation. She cried constantly as soon as the clock struck 6PM, and the misery continued throughout the night.
One day when she was about two months old, I estimated that I slept a total of six hours over the previous three nights. Co-sleeping, breastfeeding, swaddling, Happiest Baby on the Block tips and god-awful womb noises--none of it worked.
During the day, Syd nursed constantly. She never napped. If I put her down for two minutes, she would scream. I learned to do everything with one hand while I held her to my breast with the other.
On a positive note, I had some pretty muscular arms for someone who never went to the gym.
Without the ability to self-soothe, she needed constant comforting. When I told the doctor about my concerns, she said that I should supplement with formula. No matter what I told her, and despite the fact that my baby was growing at a steady rate, blaming hunger and poor production (I had plenty of milk) was the easy answer. But nursing mothers know the difference between feeding and latching for comfort, and this kid needed comfort for most of the day.
It's amazing how many doctors fail to listen or respect a mother's intuition when it comes to her own child.
I was also told to let her fuss and cry, and that she would get over it on her own. That never happened. Instead, her frustration would escalate, and before I knew it, I had a baby who screamed inconsolably for hours.
Syd's first pediatrician visits didn't reveal any problems. The doctor said that she was the most alert newborn she'd ever seen. Every test showed that she was strong and healthy. Her sleep patterns improved. She reached most milestones ahead of time. She was sick one time in her life, with a fever that lasted several hours, then went away on its own.
She started babbling early, and we thought that she would be talking early as well. But today, just shy of her third birthday, Syd's language hasn't changed much over time. Looking at videos from her infancy, much of what she says sounds the same.
On top of that, she has never told me that she's hungry. She has never told me that she's tired or needs a drink or wants a toy, no matter how much I try to teach her to say these things.
But she can count to ten. And she can say and write letters of the alphabet.
The seeds of conversation aren't there. She knows her name, but rarely responds to it. She is often in her own world; the only way to reach her is by touch or the Dog Whisperer's attention-grabbing PSSST!
But at the same time, I say "bath time" and she runs to the bathroom. She knows "bubbye" at bedtime means that it's time for her to get into bed (night-night doesn't take).
Other moms I meet offer words of encouragement. Some say that their children didn't speak until they were well into toddler-hood. Others say that the brightest children they know didn't talk until they were older.
(I love older moms. They always encourage me with a grimace and a "get outta here!" when I express concerns about Syd's challenges. It's comforting. It has saved me from many a panic attack.)
Kids and Visitors and Store Clerks, Oh My!
Syd has never been too keen on playing with other children. Her cousin, who is five months older than she, is the only one she has ever played with on purpose.
When we go to the playground, she likes to watch the others play. But as soon as a child approaches her, she runs away or ignores him. I say, "Sorry, she's shy" or "She doesn't talk yet." The latter is always a mistake, because they invariably ask, "Why not?" To which I answer silently, "Your guess is as good as mine."
I don't want to apologize for her as if she's doing something wrong, but I also don't want others to feel hurt. So there's that.
At about a year and a half, Syd's anxiety started to set in when others came to visit. She'd cry for about five or 10 minutes, then relax and "talk" to our guests. Going over to others' homes for visits was fine--she loved to explore new surroundings.
Over time, the anxiety grew. Today, if you were to come over our house, she would cry almost the entire time. Often, she trembles as if we've allowed an axe murderer into the house. I can't put her down, even for a minute. Going out for visits are equally terrifying.
But if we met you at the beach, she'd be okay. She would go off on her own to throw stones and pick up shells, but she wouldn't freak out.
Unless, of course, you're an older man with gray hair. I feel so bad for the grandpa-types, especially the baggers at Publix. They hand her a balloon and feel so proud, only to be met with tears.
"Sorry! It's just a phase she's going through."
Avert Your Eyes
People continually compliment Syd on her behavior. She sits in the shopping cart, happily chattering down the aisles. She never cries or screams or demands a thing.
For a time, she burst into tears if someone even looked at her. Cashiers had to avoid eye contact to sustain normalcy.
But now she is comfortable with eye contact and even offers a quick wave with a soft "hi" and "bye".
It doesn't sound like much, but it feels like a huge step.
Life is Hard!
I question myself every step of the way: what did I do to make life so challenging for my little girl? Did I eat the wrong foods when I was pregnant? Take the wrong vitamins? Did I try hard enough to help her sleep? Have I done something to inhibit her ability to communicate? Did I make the wrong decisions during my complicated delivery?
Of course, most people will say no. But that doesn't stop the waves of doubt that wash over me every time she grasps my leg and trembles when visitors arrive. Or when she cries with frustration because she can't tell me what she needs.
I don't doubt, however, that she's a happy little girl. She loves to snuggle and laugh and draw colorful pictures. She can teach herself how to play computer games faster than I can teach myself. She chases birds and studies bugs. She's fascinated with the way rocks make a splash when they enter the water. She creates deep conversations between her toys that no one else understands.
So when is different a red flag and when is it just . . . different? Who knows? A professional evaluation is in the near future, but I'm afraid it will remain a mystery.
* Syd is a pseudonym because I feel funny using her real name.