The times I heard it, it jarred me.
“He’s just a normal kid, the only difference is he can’t hear.”
The tattooed, goateed dad watching his two hearing daughters and hard-of-hearing son run around the playground of a sun-drenched School for the Deaf was talking about his two-year-old boy, a little younger than Lei at that time. We were both there for a Preschool Institute for deaf and hard-of-hearing children and their families. I wondered if his easy confidence came from being a more experienced parent.
Or the petite, dark-haired mom of an 11-year-old deaf girl, who I met through the summer day camp for deaf and hard-of-hearing kids. She told me her daughter “was a really calm baby, and she’s still really easygoing. Gets along with everybody. She’s just a normal kid.”
I smiled and nodded. Inside me a voice was saying, “Lei’s not just a normal kid.”
In the first place, she hadn’t been a calm baby. She had been an extremely needy baby who screamed from 3 to 9:00 every evening for her first four months. Once the colic mercifully ended, she started with the non-stop shrieking. She nursed constantly, couldn’t be put down to sleep, stopped napping at a year old. We had her tested for food allergies and went gluten-free for two years in hopes of helping her calm down a bit. We were willing to try anything.
As a toddler, Lei rose at the crack of each dawn like a bullet fired from a gun. She needed constant interaction, constant stimulation. If she didn’t get what she wanted she melted down in uncontrollable fits of screaming. This wasn’t “I’m going to tantrum until I get what I want.” It was “HULK SMASH.” We tried enforcing time-outs during these meltdowns, but it just made them worse, longer and on at least one occasion, produced vomiting.
After a while I started telling myself that Lei was merely getting a jump start on her lifetime quota of tantrums. I would wait them out, silently singing “Catch a falling star” to myself. I needed a bit of levity.
I’ve often wondered if the tantrums may have been connected to Lei’s eating, or lack thereof. If she put food in her mouth, she would pack it into her cheeks until they were full, then unceremoniously open wide, dumping chewed food onto her chest. Naturally, she remained hungry.
But she loved eating other things, like rocks, dirt, sand, gravel, egg shells, sticks, soap, ointment and sunscreen. Once at a family gathering with my husband’s cousins in Texas, as all the other little girls, with their long, shining black hair and immaculate frocks played tea party at a low table, I looked over and saw my own bald-as-a-ping-pong-ball toddler kneeling on the ground, literally cramming the dust into her mouth. Sadly that fine Texas dust didn’t swallow me up.
That’s one of the places Lei’s and my chemistry combusted. She was struggling with demons that I couldn’t understand or identify, while I was giving up the image I had of being a perfect mom.
People talk about hearing their child’s diagnosis and mourning the “perfect” or typically developing child they had envisioned having. I went through that, too. But it took me much longer to admit that I was also mourning the perfect mom I wanted to be.
Before having kids I was so confident I would be up to the task. I had helped raise my niece and nephew, and everyone told me how great I was with kids, what a great mom I would be.
I would be a wonderful mom, with perfect little kids who were clean when they were supposed to be clean, good eaters, polite, kind, bright, precocious and funny. They would adorn the base of the pedestal I would occupy, shining their light on me, their amazing mother who could do no wrong.
Right. That worked out just like I planned.
The real-life version had me I run ragged by lack of sleep because Lei nursed round the clock. My nerves were frayed by her constant shrieking. I quit driving because Lei screamed like a banshee every time she rode in her car seat. I stopped going to parties because after ten minutes surrounded by people, Lei would spend an hour wailing uncontrollably.
Yeah, I wasn’t ready for a child like Lei, but then special needs parenting tends to be an on-the-job training kind of thing.
Anyway, in addition to her sensory seeking, meltdowns and sleep problems, Lei was clearly very bright from an early age. At that same Preschool Institute at the School for the Deaf, she blew away the deaf educators because at nearly two and a half she communicated easily in Pidgin Sign English, and fingerspelled some words as well. By age three and a half she was speaking in full sentences at an age when most children with hearing parents and Lei’s level of hearing loss have close to zero language or speech ability.
(Typical hearing kids absorb language from all around them all the time. Their brains sort and organize everything, and pretty soon they figure out how to produce speech. This is called passive learning. Deaf kids have to learn language through direct, active visual instruction, which is why, if their parents don’t know how to do this, they may not have any language stored up when they start preschool at age three.)
At age two Lei knew the letters of the alphabet, both upper and lower case, and was teaching herself how to write them. As soon as she started preschool she began making the P people: she would first write an upper case P, then put a face inside the enclosed part. Legs followed, soon hands, fingers, hair, eyelashes and eyebrows.
I thought she did this because she and I loved to sit with a pencil and pad of paper and I would draw things she asked me to draw. For example, if she asked me to draw myself, I drew an oval face, dots for eyes, eyebrows at a friendly angle, a curved line for a smile; shoulder-length hair that flipped out at the bottom (your basic cartoon girl hair), and so on. So I figured Lei was just copying me.
Then a child psychologist got a look at her drawings when she was five. They were now princesses with jewelry, fancy dresses, eyelashes, curvy lips, fancy shoes, you name it. The psych told me that kids typically draw one body part per year of age.
Uh, yeah. That wasn’t Lei either.
The same psychologist was the first person to tell me, a couple of years later, to get a book on gifted children. I got one whose name pretty much said it all.
Until the idea that Lei was gifted came up, all the narratives I had heard about deaf and hard-of-hearing kids revolved around the theme of “deaf can do anything except hear.” Nobody was talking about the sensory issues, the meltdowns, the intensity of feeling and experiencing that never seemed to stop.
That’s probably because there just aren’t a lot of kids like Lei. Her IQ is high compared to the majority of hearing people; most deaf people have two-digit IQ scores. In many ways she’s in a class by herself.
She feels it. Her school psychologist recently observed Lei working with a group of her classmates. When Lei started telling them about Galileo, his discoveries and how his contemporaries thought he was, in her words, crazy, her classmates listened politely, then resumed their work. This lack of interaction with her peers happens every day for her, and among them she often feels like a wave without a shore.
When Lei was mainstreamed in kindergarten she repeatedly complained about being the only deaf child in her school, so we moved her into a school that had a deaf program. She had absolutely nothing – except her hearing aids – in common with her first-grade deaf peers. She was into Harry Potter, the Boxcar Children and Little House on the Prairie. Those who were verbal at all were talking in two-word phrases.
Her hearing classmates thought she was extremely weird, which is sort of true because she doesn’t have great social skills and was into things they had never heard of, like being a Bahá’í and simultaneously believing in Zeus, fairies and mermaids. She was lonely and acted out a lot.
That was the year that I made a recurring note on my calendar: Sunday afternoon, expect a meltdown from Lei. One day she flew at me in a rage while I was holding her 10-month-old brother.
That was one difficult day in a difficult year. Lei’s childhood has had a lot of those. We tried a lot of different interventions, but I think that the main remedy has been time. Well, time and love. She has needed time to mature into greater impulse control, which is still a struggle. But she’s improving.
And then there’s that other ingredient: love. In the depths of my own struggles I have been angry at Lei for preventing me from fulfilling my fantasy of motherhood and for preventing our family from doing normal things like leaving the house to go for a walk. I have struggled to get her to make eye contact with me, striving desperately to reach her in an inner world where she seemed a million miles away. With her stubbornness, insomnia and tantrums Lei hasn’t always been easy to love. But in spite of all her challenges and my many imperfections, I have found that my love for her – and her love for me – can weather the storms. It frequently hurts to catch this falling star, but I can’t help it. I love her still.