The journey of Amal & Samira

Amal and Samira at a Positive Partnerships event

Amal (pictured right) has been instrumental in helping us create a range of Positive Partnerships resources for Arabic communities. She recently shared her story with us in an interview for a video resource we are producing. In this inspiring interview, Amal revealed what she has learned as an Arabic mother in Australia raising a child with autism.

Amal’s daughter, Samira (pictured left), is 17 years old and was born in Australia. She lives with her family and recently moved from a private Islamic school to complete her education at a public high school. Samira is making good progress in her studies and, her mother reports, is looking forward to a career in writing children’s books.  ‘She’s very friendly; she’s a character’ Amal says of her daughter. ‘She always speaks her mind; I feel very lucky to have her’.

‘For me, it started out as a gut feeling’, Amal said about the early stages of the diagnostic process. ‘I felt that something wasn’t quite right with my daughter. She was too quiet, she had limited interests, she’d just play with her fingers and watch the same videos over and over’.

Amal continues, ‘I kept voicing my concerns to my husband and he reassured me everybody develops at a different rate’. He told her, ‘she’s different to her brother, you can’t compare them’. Amal now realises that, although that is what she wanted to believe, ‘it’s important to voice your opinion’.

‘If you’ve got concerns, don’t just dwell on it and push it to the back of your mind’, she advises.  Face your fears, investigate and ask’.

Preschool staff also noticed early signs and suggested Amal take Samira to a paediatrician who specialised in developmental disorders. Samira was diagnosed with autism.

Amal’s initial reaction was of shock and fear. She reflects ‘I didn’t know what to expect … so the first thing I did was just a lot of research, trying to understand what it meant for her’.

Reading other people’s stories helped Amal to deal with the diagnosis. She says ‘when I started to read other people’s stories, I thought there is hope it’s not the end of the world. You have to have family and friends for support around you”.

After the diagnosis, Amal and her family took immediate action for Samira. ‘We had occupational therapy, speech therapy, we had the IQ test, and then I started to take her to special support groups,’ she reflects.

Samira’s biggest strength is her memory, according to Amal, who says, ‘I think that’s served really well to get her where she is at the moment. It’s helped her to read and write in both Arabic and English’. Samira’s communication has also come a long way, Amal told us.

Amal has some concerns for Samira relating to making and keeping friends. ‘I don’t feel she’s quite got anybody there for her at the moment’, she says.

Samira has also shown signs of restricted interests, having an obsession with looking at herself in the mirror, as well as difficulty with changing routines.

Amal remembers the focus needed when teaching Samira social skills. She reports that ‘it took a long time to get there, we had to target it and work on it, teaching her how to make friends, how to be social and what sort of things to say’. Amal has a sense of humour about it too, telling us, “I remember trying to teach her how to give compliments. I told her you have say something nice, and I remember her turning to her brother and saying ‘you’ve got a nice back’ ”.

Over the years, Amal has found working closely with the school to be very important. ‘At school when she first went to a satellite class, they taught me how to use social stories’ she told us, ‘they would target anything that could differ from the norm, any unexpected change in the routine, they prepared her for it and they taught me how to do it as well’.

‘I found that really, really, helped.’

On communication with the school she says, ‘you need really open conversation with the school, expressing your concerns, your wishes your aims and goals, not just academically but socially as well as other aspects’.

‘You know your child best,’ she continues, ‘you know what they are capable of, you don’t want to underestimate their ability’.

Amal keeps a level head when it comes to her goals for Samira, ‘with Samira, my approach has been to always aim for what I would have expected from her otherwise’. She says ‘if she gets there, beautiful; if she doesn’t that’s alright’. Amal says she tries to ‘cut her a bit of slack, but always aims high’.

‘This year I’m hoping she can be a little bit more independent, I’d like her to be able to travel independently’ Amal says. ‘I’d like her to do more around the house and be more responsible’.

Her advice for other parents is that ‘if you do get a diagnosis of autism or another disability, it’s not the end of the world… be hopeful, don’t worry about too much into the future, take it one day, week, month at time’.

Another piece of advice she shares is ‘to be as involved as you can, especially with the school. Don’t let them lead the way and you just follow’.

‘You know your child best, you know what their strengths are; what their weaknesses are, and what you would like for them to achieve’.