When You Say My Child Is Behaving Strangely, This Is What I Wish You Knew

16/06/2016 10:21 AM AEST | Updated 23/09/2016 8:48 AM AEST
NEW! HIGHLIGHT AND SHARE
Highlight text to share via Facebook and Twitter
Getty

While I was pregnant, I experienced these fantastic, lucid moments of connection with my child. I can't even put it into words. I just knew her from the moment that she was there. I knew Ruby.

But when Ruby was born, she was silent. I didn't hear her cry for three days. For the first year of her life, she very loosely met her developmental milestones, but at 12 months of age, there was a huge regression. She lost all her words and stopped what very little eye contact she had been making. She only seemed to be able to focus on objects, not people. She wouldn't respond to her name. She'd get lost in her own world.

I got in touch with a maternal and child health nurse, who put me in contact with OTARC, a centre dedicated to the early detection of Autism. Ruby was 15 months old when we visited the clinic. Within hours, the therapists told us exactly why Ruby was being diagnosed as on the autism spectrum.

As a parent, it felt like the earth could have swallowed me whole. I didn't know anything about autism, or where to start.

But even from that initial diagnosis, the path towards assistance was made very clear. As a mother, early intervention means obtaining quality occupational and speech therapy. It also means getting right down at Ruby's eye level to find out what motivates and engages her. Ruby turned two a few months ago. She loves music -- Adele is her favourite -- and singing scales. I crouch down so I can look her in the eye and sing to her.

But when we're out at shopping centres or cafes, we do get some odd looks. Ruby might run around in circles or say words repeatedly. She can get so overwhelmed that she shuts down. I hear people say, "That's strange," or "She's in her own world".

Sometimes, the comments are aimed at me. I was at a shopping centre once and I handed Ruby my phone so she could watch soothing music videos. This older woman said to me, "That's disgusting parenting".

I used to bite back when strangers said things like that but now I don't. I just wish they knew what it was like. I wish people knew that autism is only a tiny part of what makes Ruby who she is.

What appears to others to be strange behaviour -- like repetitive words or actions -- is actually her way of regulating her senses. Her brain translates her environment differently. But like all people, Ruby has many different layers. She has a great sense of humour and wants to play all the time. Ruby is beautiful, like all daughters are beautiful.

She'll kiss and lick my face and she loves cuddles but that took a lot of hands-on work. I started baby massage and taking baths with her to try to overcome her sensory issues and realise that touch can be a good thing.

We live in Melbourne. OTARC, Amaze , Noah's Ark and Moira Disability Services have been incredibly supportive to me as a full-time carer. My family have been fantastic. Like me, they didn't know about autism but they've done their research. One of our friends has a two-year-old, and when I told him Ruby is on the autism spectrum, he looked at her and said, 'she's just a two-year-old.' And that spoke volumes. It said to me, Ruby is just like everyone else's daughter.

There are a lot of positives I can take from the autism diagnosis. We're now involved with La Trobe University's Australian Autism Biobank, Autism Specific Early Learning and Care Centre and ASDetect, a free smartphone app. Ruby and I are active in PlayConnect playgroups and I'm developing a series of blogs, sensory friendly cook books and YouTube episodes that aim to debunk some of the myths around autism.

I am so grateful that I am connected with this community. Recently, we were at our autistic specific playgroup, PlayConnect. It's always lead by a psychologist and Ruby walked straight up to the psychologist, looked her straight in the eye, gave her a big smile and put out her hands and said 'mama!' as though saying, 'where's my mum?!'. We all screamed!

The other mums were just so elated. They were hugging me, one of them picked up Ruby and kissed her. I just thought, I am so lucky.

I had always thought I'd have a certain number of kids. I had even picked out their names. I went through a grieving process when I realised those dreams weren't going to come true. I won't have any more children. I've been told there's a one in four chance if I do have more children they will be on the autism spectrum.

Parents of children with special needs want all the doors of opportunity for education, therapies and funding to be open. We can do this through education, early diagnosis, early intervention strategies and advocacy.

My child, like all children, doesn't deserve to be left behind, judged unfairly or discriminated against. Ruby is different, but she is not less.

World-first research from La Trobe University's Olga Tennison Autism Research Centre has enabled earlier detection of Autism Spectrum Disorder in children as young as 12 months old. This has resulted in earlier intervention and greater developmental outcomes, enhancing the lives of many -- such as Ruby, and 11-year-old Heidi, who tells her story below. To find out more about the Olga Tennison Research Centre and how La Trobe are working on solving some of the big issues of our time -- visit the La Trobe University website.

More On This Topic

Advertisement
Advertisement