Real Life raising a child with autism
At first, Carolyn Jess-cooke thought her daughter was just different
Being judged as a parent is possibly one of the most frustrating things anyone with children will endure. The looks of disapproval when your child throws a tantrum and nothing calms them, or when your child says or does something that quite literally causes eyebrows around you to raise.
I’ve been that named and shamed parent, whose child has done something to humiliate themselves and me in the process – the parent who is judged for being a terrible mother. But the difference with my daughter, willow, is that she has no sense of what she is doing is wrong and is oblivious to the looks of disapproval that often surround us. I know that the next time I am judged for being a bad parent, it won’t be the last.
One thing I’ve learnt as a mum is that no child is the same. When my youngest daughter, Willow, was born in July 2012, both me and my husband Jared, 31, knew not to compare her to her siblings. Just because my eldest, Melody, then five, was talking in clear, full sentences by 18 months and our son Phoenix, four, and daughter Summer, two, both walked before their first birthdays, it didn’t mean that Willow would.
As a baby she was loving and bubbly, and she later grew into a confident, sociable and feisty little girl. Even from a young age she showed a kind, friendly nature towards her siblings. But she seemed to shy away from strangers, and when she was around anyone who wasn’t family, she instantly became
withdrawn and quiet. I didn’t see it as anything to worry about and assumed she’d grow out of it.
At home, Willow always knew how to get her own way and at just three years old built a tower from a chair and stack of pillows to reach the biscuit tin from the top kitchen cupboard. Far from being angry, Jared and I were so impressed with our determined little girl.
She had a lot of energy too – while the other children would go off to bed without any trouble at 7pm, Willow would still be wide-eyed, not sleepy at all. She’d beg me to sit on the sofa with her and read her story after story.
Willow’s lack of sleep was making Jared and me exhausted, but she was such a loving little girl, and I enjoyed how clingy she was with me because I knew how quickly children could become independent and stop wanting to hold mummy’s hand.
In denial
Only, Willow was still speaking in garbled baby language, struggling to form proper sentences.
Jared and I were concerned, so in August 2015 we took her to a speech therapist. During the meeting, we were asked a series of questions about Willow’s behaviour. ‘Does she have any unusual habits or obsessions?’ the therapist asked.
‘Not really,’ I said. Then I paused. Willow would play for hours, tying her teddies together with elastic bands, and any other random items she could find. I once found our toothbrushes in a tangle of bands, and my shoes all tied together by their laces.
It was something Jared and I had seen as a cute quirk, just something Willow did because she thought it was funny, but maybe it wasn’t.
‘It might be autism,’ suggested the therapist, listening carefully as I explained.
I’d heard of autism before but it was something I associated with little boys obsessively lining up cars, not making eye contact and flapping their hands. This, I was to learn, was a stereotype. It isn’t a ‘one size fits all’ condition. But at that moment, in the meeting with the therapist, I just couldn’t see how such a condition could affect my confident, happy little girl.
Over the next few months, Willow had a series of tests, but a part of me still believed my daughter was just quirky.
Though now, whenever she did something out of the ordinary, it made me question whether I was in denial.
When we got the children a new kitten, Willow was so excited and kept grabbing it. ‘You’re being too rough,’ I warned her, yet Willow just couldn’t seem to understand what she was doing wrong.
Another time, I took the children out to the park, but as we got out of the car, Willow darted across the road before I could stop her. She had no sense of danger.
The new normal
After an incident at a wedding in August 2016, I had to accept that Willow’s ‘quirks’ were more than just that.
Just after the ceremony, a woman tapped me on the shoulder and asked, ‘Is that your daughter?’ pointing to my four-yearold, dress hoisted up around her hips, knickers around her ankles, wetting herself on the lawn in front of shocked guests. Willow had no idea that what she’d done was unacceptable.
It still took another five months though, before, in January 2017, Willow was officially diagnosed with autism. And, even though I’d prepared myself for it, I found the label devastating. I lost count of how many nights I spent sobbing and grieving for the ‘normal’ life I knew she would never have. I worried about everything – about her making friends, being shunned by others, about never finding a partner who understood her.
With our other children, we had a level of certainty about what their futures held – forging careers, getting married, having their own children. But with Willow, we didn’t even know if she’d learn to speak properly, live independently, or ever learn to look after herself.
Worst of all, Jared and I felt like we had very little support. It wasn’t until I found the National Autistic Society online, who gave us advice and introduced us to other families who were affected by autism, that we finally began to feel more positive.
In the last year, Willow has blossomed into a confident and capable six-year-old. She is blessed with a friendly and outgoing personality. Forthright and funny, she charms most people she meets. And now we know what triggers her anxiety we know what to avoid – like the cinema, where the noise and darkness can overwhelm her.
Sometimes just asking Willow if she wants toast or cereal for breakfast can upset her, so we try to make the world as decision-free and simple as possible.
We’ve learnt that routine and familiarity is key to keeping Willow calm. It’s no different to other parents getting to know their own children and loving them for what makes them unique. Willow simply sees the world differently and I love that about her.
It’s funny, but when I look at family pictures of us now, I don’t see Willow as being the ‘different’ one – I see a myriad of complex personalities, likes and dislikes and I think how well we all fit together, despite our differences. ✱ Visit autism.org.uk. Carolyn writes under the name CJ Cooke and her latest book, The Blame Game (£7.99, Harpercollins), is out in march. For more information visit carolynjesscooke.com
‘her quirks were more Than That’