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'My four kids have special needs. But it took me much longer to recognise my 16-year-old's.'

Without motherhood, I’d have self-destructed long ago. At times, my only source of strength was the sense of responsibility I felt to my kids. Without them, there’d be little left of me today but the memory of someone once charismatic, quirky, impulsive, and desperate to be loved.

Instead, I sit here a matriarch — the mama bird in a beautiful nest I built for my babies, who are turning into incredible young women. At eight, 10, 13, and 16, they are each at different stages of learning to fly. My job is to both feed them and teach them to feed themselves. I need to let them venture out, and I also need to catch them when they fall.

Sometimes, it’s hard to find the right balance.

***

I have been lucky enough to be a mum to special needs kiddos. This has challenged me in ways I couldn’t have imagined. In the process, it’s also turned me into a better person.

“Look,” I tell my girls when they get down about their limitations, “we all have stuff.” All of us. We all have crosses to bear and hurdles to jump. Conversely, we all have gifts — things that make us special and unique. Our uncommon talents, traits, and abilities are worthy of just as much attention as our deficiencies. It all depends on where we choose to direct our focus. “Choose wisely,” I tell them.

My two younger daughters’ “stuff” is the most conspicuous. My eight-year-old was born with cerebral palsy and a condition called syringomyelia, which is a fluid-filled cavity in her spinal cord. My 10-year-old, whom I’ve probably written about more than the others, has autism and a constellation of related secondary symptoms.

Watch: What life is like with Autism Spectrum Disorder. Post continues after video. 

Video by Autistica

My 13-year-old’s challenges are tame compared to those of her younger sisters. She was diagnosed with dyslexia in the first grade. Although her general abilities at that time were equivalent to that of a fourth-grader, her reading was stagnant at the preschool level. Today, after seven years on an individual education plan (IEP) for her learning disability, she’s in eighth grade and in the gifted program offered by our local public school, with the designation of being a “twice exceptional” student. She’s doing fantastically.

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It took me much longer to recognise the special needs in my 16-year-old. Her “challenge” doesn’t have anything to do with the conditions that typically justify therapeutic intervention.

She’s also the most difficult of the four for me as a mum. I can show my autistic child how to introduce herself to people. I can help my child who has cerebral palsy with fine motor coordination. I can do homework with my dyslexic child, clarifying passages when she doesn’t “get it.” But there is no way for me to model the right way to work through Jane’s “stuff.” There is no example I can set. She is smarter than me. Quicker. More delicate.

Her “stuff” is that she is “profoundly intellectually gifted.”

***

Many people don’t consider extraordinary academic intelligence to be a kind of “special need.” I can assure you, in the American public education system, it is.

Kindergarten testing identified Jane as one of only two five-year-olds in our little suburban school system who qualified for gifted education services. It was pretty simple: they sent home a permission slip to test her and then called with the results. They then sent me an invitation to meet with a gifted program teacher to go over the results and the services available to her. The note ended with “Congratulations!”

gifted child
They then sent me an invitation to meet with a gifted program teacher to go over the results and the services available to her. The note ended with “Congratulations!” Image: Getty

When the teacher and I sat down, I was elated. Because she was my oldest, having a child in school was all new to me; parenting, overall, was fairly new to me. She was my experimental child. I didn’t think she was very different from other kids. I thought she was shy and reflective, like her dad. I knew she was smart, but I had no point of comparison, and I walked into that meeting beaming with pride at what I considered her “accomplishment.”

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Her teacher was less enthusiastic. She was proud of Jane and excited to work with her, but she also had concerns. I’d failed to understand that there is a difference between “qualifying for gifted services” and my daughter’s results.

Mrs. Monday pulled out Jane’s test scores and began to go over them with me. A child is required to score at or above the 95th percentile in either the verbal or nonverbal subsection of the test to qualify for gifted services. Mrs. Monday explained that children usually qualify in one category or the other but not often in both.

My daughter was above the 99th percentile in both areas.

Mrs. Monday then showed me the bell curve plotting composite scores. At first, I couldn’t find Jane’s dots — because they were essentially off the chart. My daughter had scored three, maybe four, standard deviations to the right. This is where the conversation got serious.

The term they use for students who achieve these scores is “profoundly gifted.” I’m generally not a fan of adverbs, but it turns out this one is important. As Mrs. Monday explained, there is as much of a difference between a “gifted” student and a “profoundly gifted” student as between a typical learner and a “gifted” student.

And this could be a problem.

Listen: Dr Mimi Wellisch joins Holly Wainwright and Andrew Daddo to shed some light on gifted children on parenting podcast This Glorious Mess. 

As we talked, Mrs. Monday thoroughly explained the positives and negatives that come with such an exceptional little brain. I already knew Jane didn’t have many friends at school. She was reserved and very quiet. I also already knew she was very sensitive; the slightest negative emotions would send her into a tailspin of shame and sadness. And I already knew she was bored and spent most of her days “helping” other children in the general education classroom.

At recess, Mrs. Monday noted, the children were encouraged to run around and play. The only thing my daughter wanted to do was sit and observe.

She’d printed off some handouts for me to take home. They explained that my daughter wasn’t simply exceptionally smart, she was exceptionally sensitive. Her language development and vocabulary were heightened, and so were her emotions and sensory perception. The world around Jane presented an onslaught of information, and her little brain absorbed it all. This could make her feel scared or overwhelmed.

I went from elated to sad, wondering how I could help my baby. She was living on a different plane than her classmates. Hell, she was on a different plane from me and may as well have been in a different galaxy altogether from her father. (By all academic standards, he’d been an average student; he struggled in school far more than I had, though for different reasons).

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***

It made sense. Jane had been a miserable infant, baby, and child. She seemed unhappy all the time. As a tiny one, she appeared frustrated with the limitations of her body. It was as if her brain could imagine things her body couldn’t yet do.

When she began to talk, she again seemed frustrated with her inability to access what she wanted in the world around her. I tried my best to do things I thought would keep her happy and stimulated, like participating in mom groups so she could make friends, taking her to birthday parties, and going on day trips. These things never seemed to satisfy her.

Preschool had been a nightmare. The teacher had no idea what to do with Jane after she learned the alphabet in a matter of days (the other children spent months on it). She didn’t know how to handle Jane’s refusal to participate in circle songs — all Jane wanted was to sit, count beads, and observe the animals on “Harmony Farm.”

In her ignorance, she shamed Jane. And Jane has scars. She learned to fall in line and do as she was told. She learned that moving at her own pace wasn’t okay.

When Jane reached age five and started kindergarten, she was still miserable. She cried going to school every day. She was bored in class, and it was difficult for her to make friends. Still, she was a kind and sweet girl. She wanted everyone to like her; she simply couldn’t find anyone to relate to.

Looking back, at least now I know a bit about why this all happened.

***

In the first grade, I inquired about Jane skipping a grade because the material was so elementary for her, even with the added gifted enrichment. She was always several grade levels ahead of her class. She was despondent. It felt tragic for a kid with so much potential to be so severely neglected in school.

I’ve never been the kind of parent to push her children or worry about others’ perceptions of them. I didn’t want Jane to skip grades for the sake of impressing anyone. I wanted her to be happy.

The administration dismissed the idea out of hand. They explained that in the history of the school, only one child had been accelerated, and it had turned out to be a failure because he suffered socially. They told me parents requested to accelerate their children all the time; everyone wants their kid to be “advanced.”

“My kid is advanced,” I told them, “significantly and empirically. She’s not learning anything where you have her. Help my baby not hate school.”

They resisted, and I didn’t push. “Maybe they know better than me,” I thought.

In retrospect, I should’ve pushed.

In third grade, the issue came up again. Within three weeks of starting the school year, Jane’s teacher told me she wanted to move Jane into fourth grade. “Try as I might,” she said, “there is nothing I can teach her in here.”

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So we did. Of course, it required cutting through a clusterf*ck of red tape. Her teacher even had to go before the school board and personally ask for approval, which she did, and I’m grateful for it. Within weeks, Jane was accelerated. It helped her not hate school as much — but she still didn’t enjoy it.

By late sophomore year of high school, things had reached a breaking point. Although Jane’s grade point average had her easily on track to be valedictorian of her class, her physical and mental health were breaking down. A combination of anxiety and chronic nausea made for a medical condition that prevented her from attending school. She became what the district labeled a “homebound student.” She registered for every college-level class the district offered and completed them all from home.

***

The feeling of parenting a “profoundly gifted” child is difficult to explain. There is pride, of course. There is also fear, along with an overwhelming feeling of inadequacy, especially as she gets older and my capacity to understand what she’s thinking diminishes with each passing year.

I was labelled gifted, too, but not “profoundly.” If my brain is a Dodge Charger, hers is a goddamn Tesla X.

What do I do when her knowledge inevitably exceeds mine? What happens when I can no longer teach her? What happens when she discovers that her mum is just like everyone else who doesn’t get things the way she does? What if I screw her up because I can’t understand or model for her the woman she needs to become? She keeps getting smarter and mastering new concepts, but I just stay the same.

gifted daughter
"What do I do when her knowledge inevitably exceeds mine? What happens when I can no longer teach her?" Image: Getty
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Even the most straightforward parenting experiences come with a bundle of fears — especially with our oldest children. There is no handbook, and it feels like one fuckup could scar your kid for life. No matter what we do as mothers, our first impulse is always to blame ourselves.

***

Every day for 18 months, Jane read, studied, slept, and vomited. It happened over and over again. Her medical condition presented as a gastrointestinal disorder but didn’t fit any concrete diagnosis that suggested a remedy. Her thyroid failed, and she developed ulcers and edema in her esophagus. She fainted. She had gastroparesis. The doctors didn’t know what to do, and I was becoming increasingly desperate.

Until Jane came to me and said, “Mum? I think I have a vagus nerve disorder. I’ve been doing some reading online and my symptoms match up pretty well with abnormal functions in my vagus nerve. The nearest specialist is in Texas. Can we go?”

I thought, “What the f*ck?” but I didn’t doubt she was onto something. We never made it to Texas, but we did more research together on the vagus nerve, stress, anxiety, hormones, and the sympathetic and parasympathetic nervous systems. We sought out information on anything that could possibly help. We bought books, read about home therapies, and practiced yoga, diaphragmatic breathing, and meditation. Jane eventually — and amazingly—worked through it.

And as her health improved, we came to a clear and decisive decision about the likely source of all her stress, and what to do about it: Jane would never go back to that school again.

Fast forward to today. Jane is 16. She is a freshman at the local state university, attending on a full ride for “exceptional academic potential,” and she lives at home with me and her sisters across the street from campus.

She graduated high school in three years and is in the healthiest place, mentally and physically, she has ever been. She is taking Arabic and calculus with analytic geometry, and she set the curve on both of her first two exams for the 200-student lecture class. She was granted an override into a graduate-level class on informatics. She will be a sophomore in January because of all the advanced placement credits she racked up while homebound.

Most importantly, she is happier, more gratified, and more satisfied with her life than she has ever been. It only took 12 years of torture — at my hands and those of the public education system — to get her here.

I didn’t know how to meet her special needs, but I’m learning.

***

I am telling this story in support of the idea that Jane’s needs are just as special as any of her sisters. Her sisters have IEPs, therapy, and support. Jane had nothing but me, and I feel like I failed her for a long time despite my efforts.

Jane was born with an innate ability to learn faster than anyone I have ever met. She has an insatiable curiosity that needed to be accommodated in her young, impressionable years. That ability also came with limitations and deficiencies she still struggles with. I can’t help but wonder how many other miserable, underserved kids out there reach the inevitable conclusion that they just don’t belong in this world because everyone around them praises their intellect but fails to address the special needs that come with it.

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Neglecting those needs isn’t just a matter of these children not “reaching their full potential” because it will fail to be recognised and supported. It’s more insidious than that. It’s the feeling that they don’t belong. Not in school. Not with friends. Not anywhere on this Earth.

One of the things I did, as a mum — and I think it helped Jane to engage her mind, even when she was little — was help her write books. At three years old, she wanted to write stories using characters from her preschool’s phonics curriculum. I would have her color me a picture, which she would then bring to me as I sat at my computer and wrote my own stories. She would dictate the words as I typed them verbatim. Then, we would print them out and assemble books. We did this for two years until she went to kindergarten.

I recently rediscovered Jane’s preschool book collection (I thought they’d been lost to the ages). They are beautiful, creative, and hilarious. The other day, Jane and I read them together. I recorded some silly commentary, and it might be my favorite thing in the world right now. I can see myself treasuring that audio in 10 years the same way I treasure her little books today.

In almost all of Jane’s stories, the main character runs away. I didn’t realise this until I unearthed them this fall. It’s not a coincidence. The day I exhaust my ability to teach her things is coming too fast. She will soon need new models, examples, and people like her to emulate. Right now, she lives at home, but she’s hell-bent on running off to some prestigious east coast university in the next year. I pray that when she runs away, she finds her place and her people.

Jane has never had a sense of belonging — at least not outside our family. Certainly not at school. The idea of a place where she finds her own people is a powerful pull. That is something I can relate to, and I can’t blame her for escaping to look for those who will understand her, who she can have stimulating discussions with, who operate on the same plane as she does.

I can’t wait for her to venture out and find what she is looking for — and I also pray the time will never come.

Except, not really.

Fly, sweet girl.

I’ll be here to catch you if you fall.

This story originally appeared on Medium and has been republished with full permission. For more from A.J. Kay, you can find her on Twitter.

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