Autism: «Don't let anything hold you back»
Until nine months ago, Jalia did not speak. Then something clicked, and words came out of her mouth: «Water,» «Mummy,» «Apple.» Hearing her speak is indescribable. It is impossible to imagine what it is like when a child is desperate because they cannot make themselves understood. We celebrate every new word. Jalia only says some things in English – she listens to English-language children's songs. Music is her joy and her refuge.
Autism manifests itself differently in everyone.
Josefine, mother of Jalia
That's not the only reason why the iPad is her constant companion. The device has a programme that helps Jalia communicate. It provides her with an overview of places, people and activities from her everyday life, which are displayed visually and converted into words when clicked on. Her talker enables Jalia to communicate when words fail her. This has also opened up new possibilities for me.
I can explain to my daughter what we are going to do. This means she doesn't find herself in situations that overwhelm her so often, because Jalia knows what to expect. Then she screams out of sheer panic, and you can stop everything immediately.
Unusual behaviour
Early on, caregivers noted that Jalia's play behaviour was unusual. She had no interest in picture books, balls or toy cars. When she was happy about something, she did not share her joy by making eye contact. I assumed that her social and linguistic development just needed more time because Jalia was ahead in terms of motor skills: she had learned to walk at nine and a half months.
During the two-year check-up, the paediatrician referred Jalia for a developmental assessment. That was when autism was first suspected. What I read on the internet while waiting for the assessment results made me feel very uncertain. Yes, Jalia fluttered her hands and didn't talk or play like other children. But she always sought closeness and contact with other children!
We work on small things: eating at the table instead of on the floor or completing tasks such as putting felt-tip pens away.
Josefine, mother of Jalia
I didn't recognise Jalia in the descriptions of isolated autistic children. It was only during the assessment process – she was diagnosed with early childhood autism before her third birthday – that I understood what a spectrum means: autism manifests itself differently in everyone.
Seek help
I said goodbye to my idealised notions of motherhood and threw myself into it: Jalia and I learned sign language, and with the help of specialists, we practised every day to stimulate her attention and imagination. We work on small things: eating at the table instead of on the floor, finishing tasks such as putting felt-tip pens away, trying out a game and sticking with it a little longer each time. I have come to terms with the situation instead of struggling with it.
I am lucky with Jalia; so much is possible. We even flew to South Africa. Things like that require three times as much preparation and energy for us. Nevertheless, I want to say to parents: don't let a disability hold you back. There is help out there. Unfortunately, we have to make more effort than others – but even if only a fraction of our plans work out, it makes up for everything.
