I am grateful that a year post-ASD-diagnosis for Amy, we are fully entrenched in "the system". By that I mean there are a team of professionals and organisations on board to "help" Amy : a teacher's aide, Kindergarten teachers, special education, an occupational therapist, a speech-therapist (who I have yet to meet!), a paediatrician, the family GP, and a respite carer. In the pipeline there is also a social worker and a psychologist.
Even in a town of 40,000; there seems to be what I consider to be, quite a lot of support. Autism New Zealand continues to be the best form of support that we have, now that I've started making connections with some of the other local Mums of ASD and Aspergers kids.
Sometimes though, the professionals and organisations we deal with get it wrong. It was interesting when I did the SAMS course (a free course for parents of special needs children) recently, a big focus was on maintaining relationships with professionals/organisations. There were several horror stories from the Mum's present. Most of us had struggled to keep our emotions in check when dealing with difficult situations in a professional setting.
It is great having the access to this team of people that are there to help my daughter; yet sometimes it feels as though Amy is scrutinised more than she should be. Things are occasionally picked up that I believe are totally irrelevant to her autism.
This happened in recent weeks when a professional went into her Kindy without telling me and proceeded to tell myself and Amy's teachers aide that she had some issues in an area that was completely unrelated to ASD. My husband and I were flabbergasted. After talking to another professional about it (because not all the professionals/organisations on board are on the same page at times!); I was advised to just ignore that piece of information. So I will.
Overall, the help we get for Amy is outstanding. But every now and then, I am left wondering what a particular piece of advice was about or why certain observations were even made. It alarms me that a true understanding of ASD is not something that can be taken for granted with professionals.
An organisation I'm really rapt with right now is Support Works. At the end of last year we were allocated, after an assessment, several days of respite care. All we had to do was find a respite carer. We appointed a neighbour who seemed perfect for the role at the time but it fizzled out as she is a busy Mum with three kids. However three weeks ago we hired a new respite carer - a teacher-in-training at Amy's Kindy and it is all working out really well. My husband and I are going out on "dates" on a Friday night - just for three hours (7.30 - 10.30pm). Amy is asleep by the time our respite carer arrives so it's all pretty straight-forward.
It has been so good for us as a couple to go out and have some fun/time out of the house the last few Friday's. We have put in the hard yards with Amy for the past (almost) four and a half years so it feels good to give something back to ourselves at this point.
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