Alison’s story about
Leah, born April 1988

by Alison Miller

 

December 1982: I leave teaching and bored, go to the library. The first biography I read is about an angelic boy with autism. He has a haunting beauty and I can't get him out of my thoughts. I remember his face in my dreams but push him out of my mind.

April 12 1988: We are delighted with our second daughter. She is blonde, petite and utterly gorgeous.

April 15 1988: She has projectile vomiting. Hospital staff is unfazed but I feel that I am entering into quick sand.

May 1988: We take shifts to jiggle her in her bouncer for an hour, an hour in the pram and in the swing. She keeps crying.

June 1988: We leave her screaming in the adjoining room so that we can eat together as a family. My food sticks in my throat. I lose 10lbs.

July 1988-October 1988: The three-month colic stretches to six months. I start going to doctors, paediatricians and natural healers. We look back at her photos and realise we don't have any of her smiling.

December 1988-January 1989: We try soya milk, more food, less food, prescription drugs and herbal remedies. She is sleeping three hours in 24 in half hour intervals.

February 1989: My friend offers to mind her so I can take my five-year-old to school. The baby screams for the hour. It is the sitter’s only offer.

March 1989: We sit outside another specialist’s office. I’ve waited four months for the appointment and he is running two hours late. Our visit lasts seven minutes. Blood tests are ordered, they are negative.

April 1989: Her first birthday and I chide myself for hoping that this year they will find something seriously wrong with her. I’m losing my memory from lack of sleep.

July 1989: I sit in the paediatrician’s office for the fourth consecutive Friday and refuse to move. He offers me sedatives.

One week later July 1989: A repeat. The paediatrician admits her to hospital for exploratory surgery.

Two days later: The surgery finds nothing.
One day later: A new specialist suggests a sugar-free diet. Within hours the screaming stops.
She smiles. I sleep 14 hours that night.

January 1990: My nearly two-year-old joins the 3-5 year olds at library activities. She tells the librarian how to run the activity and answers all the questions.

February 1990: She starts Sunday school still in nappies and stays to talk to the minister.

February 1991: She starts preschool and chides me if I’m late. I can’t fake it.
She befriends the only child that does not speak English.

February 1992: She dictates several letters on community issues before our local council. They ring her at 7.30pm to talk to her. I tell them, she’s asleep as she's only four years old.
She stops breathing at preschool and is rushed to hospital. All tests are negative.
She wins an art competition in a national magazine.
She enters an adult gardening competition winning a place and writes poetry. She leaves home to live with her four-year-old boy friend. She packs a doll and a sleeping bag.
She begins school happy and sociable. She tells me some kids are naughty as the teacher writes the word ‘cat’ they say ‘dog’ when you can see it’s ‘cat’.
She wins several more prizes for art and craft in a national magazine.
She learns to read a little but is soon overtaken by her peers. My heart sinks. I wait.
I hope she learns to read soon. I wait. Her maths is well above the class.

October 1993: We find her eyes don’t converge or track. She wears lenses. I pray this is the answer.

November 1993: We are amazed when her IQ is in the top 1% of the population but she physically recoils from reading.

December 1993: The school rings me to tell me she’s stopped talking. We try to fathom why she is so impulsive and immature. She refuses to work. She is diagnosed with ADHD (note 3). We trial medication after I cry for seven months debating it.

January 1994: Unexpectedly she is called up by the minister to read – she reads from the bible and beams.

My mother declares that ADD (note 2) is a myth. I keep silent.

My sister warns me that putting labels on my daughter will be her downfall. I keep silent.

February 1994: She continues to cut up wool, paper, foil and string into tiny pieces assembling them into piles. I’ve reached breaking point and don’t know what to do. My husband ruminates at his computer.

I take her to a psychiatrist. He diagnoses her with High Functioning Autism as well as ADD and SPLD (notes 2 and 1). We trial an anti-depressant to make her less tense and pedantic. It has no effect. She writes her first book and illustrates it. She makes a new friend in kindergarten. She’s in Year 6, going to high school in 2000. I start writing my own IEP (note 5) for her without approval from her primary school. I ring her psychiatrist, Autism outreach worker and high school for a case conference. There is an 18-month wait for a visit. I wait.

 

© Alison Miller

Notes:
1. Semantic Pragmatic Language Disorder
2. Attention Deficit Disorder
3. Attention Deficit Disorder with Hyperactivity
4. Asperger’s Syndrome: A form of high functioning Autism
5. IEP individual educational plan

“A gender-equal society would be one where the word ‘gender’ does not exist: where everyone can be themselves.”*

I’ve always been aware of gender conditioning and actively tried to combat any lingering prejudices or stereotypes in my own parenting, even down to encouraging dolls with my boys when they were little. It’s great to read people writing about gender issues they’re experiencing with their kids. For too long these subjects have been discouraged or silenced. I’d love to publish some more creative writing on this topic, especially if you are struggling with a child who actively tries to move away from gender normative preferences. A society where everyone can be themselves thanks Gloria for those aspirational words.

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* Gloria Steinem