Imagine being hungry and not able to ask for food. Or thirsty but unable to ask for a drink. Having no way of telling someone whether you’re hot or cold. It seems impossible, unbearable even. But a world without speech or communication is the reality for my youngest daughter, who suffers with Rett syndrome.
Imagine, at 21, never having said “I love you”. Not even to your mum.
Born at 27 weeks, our baby girl clearly had developmental delays. She struggled to crawl. Babbling was difficult. As a toddler, she had small feet, wringing hands, and often choked on her food. She was overcome with sensory overload, with an intense dislike for sharp sounds, like babies crying or Christmas paper being unwrapped.
And doctors couldn’t tell us why.
With no diagnosis, and no clue as to what was wrong, we watched our daughter grow physically, and fretted as she became angry and frustrated. Like all of us, she wanted the independence to make her own make choices, to have friends, to laugh and to show love. But without speech or even sign language, she had no way of doing this. She was trapped inside her body, and we didn’t know how to help.
Although small for her age, and unstable on her feet, she was quick to anger. Her only way of communicating was to scream, pull hair, spit and bite. Managing these behaviours became our everyday reality. Life was difficult, both for her and for us. My eldest daughter resisted going out or bringing friends to our house. “They’ll stare,” she’d whisper. “And I’ll feel like it’s my fault.”
We tried picture-card exchange systems and devices with buttons that needed to be pressed. But our girl couldn’t stop clasping her hands for long enough to use them. Some doctors said she was “on the spectrum”. Others said she was just a stubborn second child. But by the time she was five, things had escalated enough for us to move interstate for family support.
It was a lonely time. We felt like failures as parents. People were unkind, tutting and telling us our daughter should be kept at home. Social invitations dried up and we spent our time searching for answers. But nothing helped.
There were moments, of course. Flashes of hope. We sometimes saw her give us a knowing smile when her big sister was in trouble, or show concern when I was sad. We were sure there was more going on inside her than anyone realised. Occasionally, we held our breath when a few random words came out, but our hearts sank as they were quickly forgotten.
Over the years, there were more therapies. More hopeful hospital visits. Specialists and more specialists. But no answers. Until, finally, when our girl was 14, another mum said: “Your daughter has Rett syndrome. Like mine.”
One glance at her child’s clasping hands, twisted body and shining eyes, and I knew.
Rett syndrome is a rare genetic disorder caused by a mutation of the MECP2 gene on the X chromosome. Speech, sensory sensations, breathing, movement, cardiac function, chewing, swallowing and digestion are all affected.
No wonder our girl was angry.
Like other Rett girls, our daughter’s words don’t work, and her hands won’t do what she wants them to. The only power she has is in her eyes. We’ve now learnt a technique called “eye-gaze” where we ask questions, and offer her choices between two things at a time. Then, by watching her eyes move between the objects, we can finally work out what she wants.
Recently we trialled a new eye-gaze device, which uses lasers to track eye movement. Through this device, our daughter has told us she likes Ed Sheeran, not the Wiggles. We’ve discovered she prefers jam to Vegemite and the colour pink to purple.
A world of communication has opened up. We’re finally finding out who this beautiful person is, inspiring me to write our story. A story that has been burning inside me for more than 20 years, a story our daughter has never been able to voice.
Parents and siblings of people with disabilities often feel isolated. Like us, they feel like failures. I hope my new novel Everything I’ve Never Said, a story based our own family’s experiences, will enable others to recognise their own struggles, and will help them laugh and cry at our journey, because they’ll see themselves.
And we are just like them.
• Samantha Wheeler is a children’s author. Her new book, Everything I’ve Never Said, is out now through UQP