JCPSLP - March 2018

Ethical conversations

Navigating the path towards diagnosis of DLD and evidence- based interventions and supports A parent’s perspective Donna Dancer

I was concerned right from birth that all was not right with my child’s communication as she did not cry. The perfect baby! But she was my second child, so my mother’s instinct told me things were not as they should be. She had no voice or idea how to make a sound, and I actually thought she was deaf in my ignorance of how deaf babies present. My child was constantly sick and on antibiotics for ear, nose and throat issues. These ENT health issues were always blamed by our GP for her global delay. At 18 months of age, she was grunting and pointing to make herself understood, and she was very keen to communicate and interact with the family. I finally persuaded the doctor that I did not have post- natal depression and that in fact my child had issues. Getting a referral from our family GP to a paediatrician took 18 months. I was filled with nothing but relief when the paediatrician agreed with my concerns and referred my child to an early intervention centre. I had never heard of DLD but as I began to read and research (without the aid of internet 30 years ago!) I realised my child was presenting as a child with DLD. The speech pathologist at the early intervention centre introduced us to Makaton key word signs to facilitate communication and my child took to it immediately. I remember this time as being very positive as we were finally getting some help and we were dealing with a professional who was able to assist in communication. Schooling and education became a huge issue for me as I wanted my daughter to be in an environment where her communication and other issues were not seen as a barrier to her interacting with other children and being part of the program. I researched daycare centres and kindergartens that had vacancies and were willing to accept a child with communication and co-ordination difficulties. The kindergarten I found had a speech pathologist on-

site attached to the kindy program, who worked with the children individually as well as having a great deal of input into the program. It was this SLP who first made me aware of a parent support group which my husband and I joined immediately and which started our education into understanding language disorders. Learning about DLD was very important to us in our journey. Our child started pre-school at a language development centre where she was supported for the next 7 years. The curriculum at this school was research based and adapted to enhance the development of language, literacy and numeracy in the students who had DLD. This wonderful school continues to cater for children with various language disorders in a small classroom setting. To my knowledge no similar school existed in Australia in the early 1990s. We feel so lucky that these professionals came into our child’s life. The foundation and development of her language, literacy and numeracy that she received at this school is the greatest gift she has ever been given, and set her on the path that she still navigates today. Donna Dancer is a community representative of the Speech Pathology Australia Ethics Board. In this column she reflects on her personal journal navigating the path to diagnosis and treatment for her daughter.

Donna Dancer

Correspondence to: Donna Dancer c/o Trish Johnson Senior Advisor Ethics and Professional Issues Speech Pathology Australia Ph: 1300 368 835 email: tjohnson@speechpathologyaustralia.com.au

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JCPSLP Volume 20, Number 1 2018

Journal of Clinical Practice in Speech-Language Pathology