By Evelyn King Metcalf.
From the back seat of the van I hear the most amazing music. That’s where my daughter shares it with me. I rarely see her otherwise, tucked up in her room, under her covers. It’s been a hard winter. And a long yet short 15 years of figuring and not figuring things out.
Usually I hear Japanese pop music, with her singing along (she does not speak Japanese … yet), or vocaloids (computer-manipulated sound), or a band of singing robots. I’ve fallen in love with Imagine Dragons, and when she plays On Top of the World, I pump my fist in the air once or twice, careful to keep both hands on the wheel, per her reminder. Yesterday, on the way back from occupational therapy, the place where her diagnosis began, she played me this song called Boats and Birds:
If you’ll be my star
I’ll be your sky
You can hide underneath me and come out at night
When I turn jet black
And you show off your light
I live to let you shine
When I say “began,” that’s not quite accurate. Her official Aspie diagnosis was a long and winding road. In 1996, two years before her birth even, I attended my first SENG conference. My eyes were OPENED! When Sidney was born, her eyes were open, too. I remember her persistent and inquisitive glances around the birthing room, probably asking herself, in Sidney-ese: “Where the heckle am I?” As a baby she was a late walker, preferring to look at books. When she finally did walk at 14 months, she’d walk around asking people to read to her. At 18 months she told an unfortunate clerk who’d called her a “lady”: “I’m not a lady, I’m a duck!” She told off another misguided clerk who tried to get her to look for penguins in our back yard: “But penguins live in Antarctica!” Her first word that she read out loud was “brachiosaurus.” She read the word “mysterious” on a sign at our favorite natural history museum. This was when she was 2.
She was an intense child to say the least. Potty training took a long time. One babysitter quit. She was worried we might call Children Services on her because Sidney could talk so much (A big red flag about the babysitter. What would Sidney tell us?). Nonetheless, Sidney was intense. She knew what she wanted. She knew what she liked: books, the color yellow, dragons, dinosaurs, flying reptiles, fish. If she didn’t get the right sticker, the right colored bell in the bell choir, meltdown. Once we sat along the shore of Lake Erie, when she was 4, discussing the fact that the shoreline had changed over the millennium. It had not always been where it is now. She burst into tears. For the first time she understood our mortality. I chalked it all up to gifted OEs, having learned about Dabrowski and Michael Piechowski at the conference. But still, I was dumbfounded about how best to meet her needs.
At 4 we had her tested for early entrance kindergarten. She attended preschool for half the day and kindergarten for the other half. This was against the better judgment of the school counselor, who had done a “nongifted” screening and found her pencil grip wrong, as well as the preschool director who thought she’d benefit from waiting due to being young and argumentative. Sometimes I wish I had listened. By the time we got a retest from the county, she started kindergarten in October. She fell asleep on the bus everyday, had trouble with social interactions, and argued frequently. She had the most trouble in gym. Her progress reports consistently told us how behind she was kinesthetically. She couldn’t skip, swing, or ride a bike. In first grade, she asked me to help her find the definition in the dictionary. After reading it, she could SKIP! She was a voracious reader of Boxcar Children books and even started to write her own version of a chapter book.
In second grade she had to have a violin TOMORROW. She took lessons from a woman at church then at an art center. She learned fast but was inappropriate at recitals. She didn’t understand the etiquette of being quiet for other performers. She’d stop and restart. The teacher hinted there might be something beyond OEs based on her experience with a twice-exceptional son. She didn’t call him by that term. It was implied. A mother at my church refused to let Sidney be alone with her son after a birthday party; she got angry with him during a water balloon toss.
This prompted me to do two things. One: contact Linda Silverman’s office. I filled out loads of papers and had a phone consultation. I went into the discussion thinking OEs. I came out of the discussion with SPD: Sensory Processing Disorder. Next stop, OT. This was right before our move out of state, so all we got in was an assessment. When we got to our new home, Sidney was entering fourth grade.
We were directed to an incredible occupational therapy center to work on her sensory issues. One visit, she actually growled at a therapist after she walked by and said hello. I was at my wit’s end. I asked our therapist in desperation: “Please tell me what you think!” She was the first person to use the term: Asperger’s. I am a teacher! I’d had one student in my 12 years of teaching with that diagnosis. I had never attributed it to Sidney. I knew nothing. But I made the phone call, got an appointment, followed through with screening, testing, more testing, and received our second definitive diagnosis. It felt SO good to have a handle to hold! The next step was an IEP.
I started teaching at a small, private school. Thinking that would be good for Sidney, I took her with me. She was also in my class. A bad idea! Kids thought I favored her. Schools that don’t support flexibility are not the place for anyone with outlying differences, let alone Aspies. What she needed was services and structure and loads of compassionate adults keeping the natural tendencies of teasing at bay. The public school, as large as it was, would have been just fine.
You’d think I would have learned my lesson. After leaving the private school, we (Sidney still in tandem) left for a gifted public charter school. Again there were little to no services supporting an IEP. It is so hard for 2e students to receive what they need for both exceptionalities! I kept thinking that when her “gifted” needs were met, she would flourish. But her inflexible, executive functioning, self-modulation deficits are just as needy, if not more.
Middle school was the time when Pokemon took over our lives! They are still at the center of our world today! In addition to the zany, dark, and wonderful world of Anime, Manga, Homestuck, and Welcome to Nightvale. Traditional high school lasted about two months. She couldn’t take the sensory overload of 2000 kids, a gym with balls bouncing, girls bombarding her with questions like: “What products do you use on your hair?” Her favorite class was theater, and she cried the day we walked out saying she’d miss Mr. K. He “got” her. He was the only teacher she’d ever cried for in nine years. She’d known him for two months.
Until this February, she has attended an alternative high school. A place where at-risk teens go to get the support they need to finish school. It has been a dream come true, with limitations. She has been wrapped around with love and flexibility by staff. It is still a physical location… with people. And a much too long bus ride after an exhausting day of being “on.” I just learned that she broke down on the bus last month, quietly sobbing, overcome with senses, noise, smells, and people. She started not being able to go to school after that. She’s pretty much homebound, unless she goes out with me. I’m her rock. I take her to OT. To the dentist. She wants to go to Wales and visit her internet friend, but that’s the only trip she can imagine taking.
I’m working on getting her a homebound tutor. Medicaid. County mental health services. Did I mention she has OCD? All of these diagnoses, this alphabet soup of an existence we lead, has baffled, surprised, overwhelmed, and yes, liberated me. I’ve needed these terms to hang my hat on for an IEP. For educators to take notice. For differentiated instruction. Programs. Explanations to family members, friends, colleagues, acquaintances, and siblings. Children sometimes need an “owner’s manual” to pave their way. In lieu of a world that takes people as they are, sometimes we need this pathway toward understanding. We are not alike. Humans have awesomeness built in, if it is nurtured and not squashed, celebrated, not tormented. Instead of “fixing” we should think of “accepting,” and as Mrs. Pickard, Sidney’s amazing Gandhi of a principal, calls: “stretching.”
So here is the rest of the song Sidney was playing yesterday. A gift:
“Boats And Birds”
by Gregory and the Hawks
If you’ll be my star
I’ll be your sky
You can hide underneath me and come out at night
When I turn jet black
And you show off your light
I live to let you shine
I live to let you shine
But you can skyrocket away from me
And never come back if you find another galaxy
Far from here with more room to fly
Just leave me your stardust to remember you by
If you’ll be my boat
I’ll be your sea
A depth of pure blue just to probe curiosity
Ebbing and flowing
And pushed by a breeze
I live to make you free
I live to make you free
But you can set sail to the west if you want to
And pass the horizon, ’til I can’t even see you
Far from here
Where the beaches are wide
Just leave me your wake to remember you by
If you’ll be my star
I’ll be your sky
You can hide underneath me and come out at night
When I turn jet black
And you show off your light
I live to let you shine
I live to let you shine
But you can skyrocket away from me
And never come back if you find another galaxy
Far from here with more room to fly
Just leave me your stardust to remember you by
Stardust to remember you by
________________________________________________________
Evelyn Metcalf currently teaches second grade at the Barringer Academic Center, Charlotte, NC. She has taught in regular and gifted education for the past 20 years in both Ohio and NC. Evelyn is a facilitator for SENG Model Parent Groups and represented SENG as NC’s state liaison. She has presented at OAGC and NCAGT conferences, in addition to the New Hanover County School system in Wilmington, NC. For the previous four years she taught third grade at a charter school for highly gifted in Charlotte, NC and served on its Vision Committee. Evelyn earned her masters degree and gifted license at Kent State University.