To Whom it May Concern;
My name is , and I would like to inform you of our experience at xxxxxx. My family moved into the area from Wynnum, Queensland in November 2008. Prior to our move, our oldest daughter had undergone a series of multidisciplinary assessments at the Mater Children’s Hospital Developmental Unit.
The Mater Hospital referred us to xx Health to be put under the care of Dr xxxx. I phoned the office a few times in order to make an appointment prior to moving so we would be able to continue our process of finding a diagnosis for Matilda. The next stage for Matilda according to the Mater Children’s was to have an appointment with a psychologist They advised me that I had to see a paediatrican first once we moved to the area. My phoned calls were not returned, and when I reached a receptionist, I was told that I would be put on a waiting list and my referral had not been received. I phoned the Mater to be given the date faxed and was told they would mail the referral and history for me.
In November 2008, I phoned again to be put through to Dr xxxx answering machine. I expressed my concern as my daughter was not going well. Her behaviour was deteriorating and her mental state was not good from the move.
Dr xxx rang back a week later and set up an appointment time two weeks later. He asked that I bring the history to him prior to the appointment. At that time I phoned the Mater to be told that the history had been posted on November 11th 2008, two weeks prior to the phone call. I went down and dropped off another copy just in case it was lost.
When we arrived for the appointment, Dr XXxx had not read the history. He asked us to start from the beginning, and as we started he stopped us 5 minutes into the discussion to say “Matilda does not have Austism, she is making eye contact with her father”. So we stopped talking and listened to him. We thought we would give it a try as he felt her difficult behaviours had to do with a lack of individual attention and suggested we do his “WWW”. It was over December holidays and we made another appointment in January.
In the meantime, our daughter was unable to enter shops as she would scream for 6-8 hours after the trip. She was becoming physically aggressive towards us. She was frantic, most of the time. We had a diagnosis of Sensory Processing Disorder from the Occupational Therapist at the Mater Children’s and were able to get some help through Commonwealth Carers in order to be able to buy Christmas presents.
We tried Watch Wait and Wonder over 2 weeks intensly. Matilda refused and hated it and would scream and attack us whenever we tried to do it, so we let it drop.
When we revisited with Dr XXxx, he said he didn’t understand why she hated it, but that we needed to persist. That he understood her behaviour was difficult, but he still believed it had to do more with parenting than anything else.
That halted our journey We had to get private help for Occupational Therapy for her Sensory issues, and that helped us.
Matilda was ill in April and while we were at the Royal North Shore Hospital the paediatrician and registrars who looked after Matilda noticed that she was unable to make eye contact with anyone there. They discussed her case and approached us as her parents to discuss the need for her to get assessed for Autistic Spectrum Disorder. They had to refer us to a private paediatrician as the public on in our “area” was Dr XXXX. We had to wait 3 months to get in. Now, nearly 8 months after seeing Dr XXxx, Matilda has been diagnosed with mild Autism. She has turned 5 in that time and we have missed out 8 months of early intervention. We have missed out in over $3000 worth of help in preparing her for school and life that is available through public funding. We have missed out of months and months of a more peaceful household. We have had to cancel our holidays this year coming in order to get Matilda ready for school and because we can’t afford too.
To say I am disappointed is an understatement. To say I am angry that the system has let us down is to put it mildly.
I do not want to see another parent have to deal with this. We as parents are lucky to have support in other places, and even then have lost greatly in our emotional wellbeing. I need to feel that other parents of children will not be let down again.
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