Memoir: my life revolves around trying to get inside my autistic daughter’s head

Memoir: my life revolves around trying to get inside my autistic daughter’s head

Memoir: My Girl

I always considered myself a confident and capable mom. My husband, Al, and I had two daughters: Naya, born in 2006, and Sienna, born in 2008. We’d survived the temper tantrums, the sleepless nights, the playground injuries. I even ran a social group for new mothers. And yet nothing could have prepared me for the arrival of Téa, our third daughter.

Her troubles began at birth, when she was diagnosed with hip dysplasia, an awkward but thankfully painless condition where the thigh bone dislocates from its socket. We brought her home from the hospital in a harness that splayed her legs like a frog; she had to wear it for the first eight months of her life to align her pelvis. Her physical challenges caused her to miss most of her early milestones—she couldn’t roll over, crawl or stand at the usual stages. But her condition had led me to expect there might be some delays. By her first birthday, she hadn’t started babbling or reaching either. She seemed alert but wasn’t performing any actions. I figured she was just introverted.

I started to worry when she hit 14 months. Not only had Téa’s development stalled, but she’d rapidly regressed, having lost her ability to make eye contact or engage with the people around her. We were living in Montreal at the time, but a friend from Toronto who works with children with spectrum disorders agreed to meet Téa for an informal assessment. She confirmed that her development was delayed. We spent months testing Téa for hearing disorders, neurological disorders and genetic abnormalities.

We learned Téa has a moderate to severe case of autism. She might have other rare neurological disorders as well, which could impact her mobility and motor skills. Whatever abilities she’s gained so far, she could lose at any moment. The news sent me into a deep depression. Would my daughter be completely immobile, drooling in a wheelchair? What would happen to Téa when Al and I were too old to care for her? I used to look for what was possible—even if she made the tiniest bit of progress, I’d be elated and reward her with praise. Now I saw regression in everything she did. If she’d stumble, I’d ask, is she losing her ability to walk? I found myself crying, worrying and mourning all the opportunities my daughter would never have.

After a few months, I realized I needed to recalibrate my expectations: Téa’s life will be harder than my other girls’, but that doesn’t mean she can’t have one. She’s intelligent, vivacious and inviting. Of my three daughters, she’s the most easygoing. Every part of my being tells me that she’s a bright and capable girl, but she’s trapped inside her brain. We couldn’t control whether Téa would end up in a wheelchair, or even if she ever spoke—but we could give her the tools she’d need to communicate.

We enrolled her in intensive behavioural intervention, a structured one-on-one approach that helps kids on the spectrum interact with the world. Caring for Téa became my whole life. She still wasn’t able to speak, so I spent hours at a time guessing what she was thinking, trying to decode the look on her face or the tone of her cry. I was too drained to make time for my other daughters—we had to make a calendar to make sure we spent time with Naya and Sienna individually. Financially, we were stretched thin. I had stopped working as a marketing consultant, so we were living on my husband’s salary, which had to cover a part-time nanny to help with the girls and Téa’s therapies, at a cost of $3,200 per month. But at least we were seeing results: by the time she turned three, Téa had learned to stand upright and walk. She could reach for my hand and tap me on the leg if she wanted something. I was thrilled. I finally had hope that she’d be able to lead a relatively normal life.

Last year, we moved to Toronto—there are more programs and therapies here, including ones that help expand Téa’s brain plasticity and change her neural pathways. Naya and Sienna, now eight and six, call themselves Team Téa: they’re her most ardent supporters, playing with her, engaging her and cheering her on.

Recently, we’ve started working on new therapies to help her cope with her setbacks. When she wants something, we teach her to tap an item, but also to look at it, so we can watch her gaze. We’re also looking into eye-tracking technology: video cameras connected to computers that log the movement of the cornea.

We don’t know what the future holds for Téa. She’s four now, with the skills of a one-year-old. She doesn’t speak, but she can walk and use her hands. We’re doing everything we can to help her hold onto those abilities. If Téa ends up unable to move on her own, it’ll break my heart—which I work hard every day to keep in one piece. So far, she’s defying the odds. All I can do is measure the progress I can see, like when she kicks a ball with her sisters, or reaches for apple slices to tell me she’s hungry. After years spent worrying about all the things she can’t do, I’m finally learning to appreciate all the things she can.

Ariana Jalfen is a freelance marketing consultant in Toronto.

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