Raising a child with Primary Language Disorder

From: Link Disability Magazine http://linkonline.com.au/read/?/p/view/issueID/32/i/601
Mum Debra Haller writes about the challenges facedpreview-cooper-web
in having a son with PLD – and her family’s journey.

In 2007, my husband and I were blessed with a second child, Cooper. Within the first years of Cooper’s life, we noticed things weren’t right for him speech-wise.

We had an uphill battle getting help as waiting lists were huge for speech therapy in both the private and public sector. After a very lengthy wait, we were finally granted eight speech sessions at Queensland Health. However, we were told that although our child had severe issues in this area, we would be returned to a waiting list as so many were in need of the service.

The entire system was difficult to navigate through – frustrating and totally inadequate. As time went on, Cooper’s problems escalated. He became very anxious and frustrated; he was totally unable to communicate the simplest of messages. We became more and more isolated as when we did go out we were met with dreadful comments. Take a moment to think about how you would feel if other people, watching your child grunting, squealing and being generally inappropriate for their age, said to you: ‘If he was mine, I’d kill myself.’

If this was an isolated comment it wouldn’t have felt so bad. However, he was regularly called a retard, a savage, an animal. We were always asked what was wrong with him and often it was suggested that we should put him in an institution. Our day-to-day lives were fairly chaotic to say the least and help was scarce.

It was early in 2011 that things finally come to a peak. Our house sustained substantial damage during Cyclone Yasi, and while still cleaning up the mess, we were devastated to learn my sister had died. It was horrific. Our lives were turned upside down and all this while trying to manage a child with a severe disability and a new baby.

That year, we did receive some wonderful assistance for my son in terms of mornings in a child care centre and some time at an Early Childhood Development Program at a state school. We also managed to access occupational therapy and speech therapy with Queensland’s Disability Services. Like magic, though, while cleaning out my sister’s belongings, I discovered a name of a child neurologist and phone number, which my sister had sourced off her transplant surgeon for Cooper.

We travelled to Brisbane mid-year to see the doctor – and he was a breath of fresh air. He explained that children like Cooper are often diagnosed as having autism or intellectual impairment when the primary issue really is a speech and language disorder. Most worrying was that this would have a major impact on his ability to learn. We asked if there was any place that he knew of, anywhere, that could help our son. Then our new journey began. He suggested The Glenleighden School at Fig Tree Pocket, which specialises in helping children with Primary Language Disorder.

We approached with caution the thought that this would be the lifeline we had been so desperately looking for. We had looked into education options in Townsville and our application to private Catholic schools was declined despite meeting their highest criteria. Our best option in Townsville was a public sector school. However, they lacked good fencing and resources, and I was horrified when it was suggested by one that the students with special needs were put in bright vests at playtime so staff could monitor them more easily. It was also suggested I might have to volunteer teacher aide time in other classrooms to free-up aide time for my son. I was told that although the staff would do their best to accommodate Cooper that it might be necessary for him to only attend school for half-days, depending on human resources, as he was a child with very high-support needs.

We went through the process of applying to The Glenleighden School and gathered the information required. We will never forget when the phone rang and the beautiful voice on the other end said that he was accepted into the school for 2012.

Quickly, we put our new house on the market and sold it for peanuts to just offload it in the bid to start our new life in Brisbane. We said goodbye to our family and friends, took a deep breath, and hoped that our decision was the right one.

Cooper started school like any other little one on their first day. He seemed nervous and excited. From the first week, we felt reassured that The Glenleighden School was the best choice for our child. Cooper’s progress is exceptionally slow, however, there is progress. He is in a safe and nurturing environment. He is respected and has the opportunity to learn by attending school for a full day. I have the peace of mind that his behaviour is understood and is being dealt with appropriately. Most of all, my son is receiving a quality education, which I believe every child in our country should have access to.

The Glenleighden School in Brisbane, operated by not-for-profit organisation CHI.L.D Association, is the only school of its type in the Southern Hemisphere catering for children with severe communication disabilities. The association also operates a clinic called Let’s Talk and offers outreach services to remote and regional communities. glenleighden.org.au

A snapshot of PLD
•Primary Language Disorder (PLD) affects one in 14 children. It is the most common of all childhood disabilities, but it is frequently misdiagnosed, perhaps as autism or intellectual impairment.
•PLD is a developmental disorder that affects how a child learns to talk and/or thinks about, understands and uses language. A child with PLD will have difficulty understanding what others say to him, to use words to respond and, in general, to communicate with others.
•50 per cent of youth offenders have a clinically significant, but previously undetected, oral language disorder. “Marginalisation from the mainstream begins in early life, particularly in the classroom, where they have difficulty both with language/literacy tasks and with the interpersonal demands of the classroom,” says Australian Institute of Criminology director Adam Tomison.

Source: The CHI.L.D Association

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