Post 10 2012

We often worry about Thomas.  Siblings of children with special needs really do have a pretty hard road.  There have been so many times when we’ve been out at the park, or doing something that Thomas loves, and a massive meltdown from James has resulted in us having to go home.  He has often had to wait quietly whilst we manage James and has often had a lot of attention taken away from him.  People tend to make lots of accommodations for James due to his condition, but the expectations for Tom are different – this can be really hard for a little boy to wrap his head around.  In terms of parenting, we’ve had to think about all of this a lot.  Thomas is a beautiful, eccentric little soul who has learnt to be the ‘comedy relief’ in the family.  He can snap James out of a meltdown quicker than anyone else.  One day earlier in the year we were driving to school and James was crying hysterically because there was going to be a relief teacher in his classroom that day.  James was crying, “I’m worried about having a different teacher.  I don’t like seeing people I don’t know,” and Tom replied, “Well James … I don’t like people who do this … {{pulling a host of ridiculous faces at James}}.”  This was then followed by hysterical laughing from both of them and the prior incident was completely forgotten.  I think Thomas is quite remarkable.

Thomas and James are almost exactly two years apart.  When Thomas was six months old and James was almost two and half it was evident that we had to do something about James.  I knew I would have to do a number of things before the Paediatrician could make a fair assessment of James.  So our first point of call was his ears.  We went to the Neuro-Sensory Unit in Toowoomba.  They only completed the most basic parts of the testing as he had a massive meltdown and started biting through his lips.  They did comment that it looked like he would need to have grommets.  This visit was one of those moments when the reaction of the staff made me realise that I wasn’t alone with my concerns about him.  We then had a speech language assessment which again he couldn’t complete as he had another massive meltdown.  The Speech Therapist (fortunately a lovely, understanding friend of mine) was also overwhelmed by his behaviour.  We then had an assessment by an Occupational Therapist.  His behaviour was less extreme on this occasion because there were swings and trampolines – things that he loved!  The OT made the same observations as the other specialists. 

His Paediatric assessment was organised for July of 2008.  Chris was away on school camp at that time, so James and I went together to the appointment.  Immediately prior to this, we had an appointment with the Ear, Nose and Throat specialist about the grommets.  Normally, I wouldn’t schedule so much on one day but this is what you have to do when you live out west – you make all your appointments at once, and do them in one trip, for logistics sake.  James had become extremely distressed whilst we were waiting for this ENT appointment.  He just screamed and screamed, bit through his face and vomited.  The staff were absolutely abhorrent to me and to him.  The secretary was actually making comments about James loudly to other patients in the waiting room.  I must admit that I did quite calmly, but venomously, tell that woman right off that day! She got the whole story in a nut shell and within five minutes we had been put into a room, and she was apologising profusely.  Immediately after this experience, I took James into the Paediatrician’s office for his appointment, with both he and I covered in blood and vomit, and looking completely dishevelled and distraught.  Our Paediatrician is Dr Jeff Prebble and he just couldn’t have been more wonderful that day because goodness knows I was a wreck by the time I made it into his office!  I brought piles of paper with me – my own observations, specialist reports and copies of Autism screening documents which I had completed.  I had wrapped my head around what was to come but nothing really prepares you for the finality of it all and reading that piece of paper that states that your child has Autism.  Just to clarify, James’ diagnosis is Classic Autism – high functioning.  High functioning simply means that his intelligence is not impaired despite the fact that he has moderately severe autism.  Autism is a complex neurobiological disorder that typically lasts throughout a person’s lifetime. It is part of a group of disorders known as Autism Spectrum Disorders (ASD) which includes Autistic Disorder, Asperger’s Syndrome and Pervasive Developmental Disorder not otherwise specified.

On the way back to mum and dad’s in the car, I just cried and cried … with utter, overwhelming relief … not despair.  Once the elephant in the room is named, you can then go about dealing with it appropriately.  I was going to see every specialist, read every book, and consult every friend I had in the field, to ensure that James got everything he needed to thrive with Autism.

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