After Amy was diagnosed with ASD it was kind of like "Now what?" for us as parents. We were given a folder from Autism New Zealand from the paediatrician. It was filled with a wealth of information and I wasn't sure where to begin. However once I started looking out there at what was available this big new world geared towards helping those with autism began to emerge.
The first thing I did was attend a support meeting at a local cafe. These are organised nationally through-out New Zealand by Autism New Zealand. However it was just me and another newbie who attended. It was great to meet another Mum with a child with autism. Yet it was quite disappointing that we were the only ones who turned up. I tried again a month later and this time two different Mums turned up. They both had children with ASD who were both older than Amy yet it was interesting to hear where they were at a couple of years down the track from we were. I will be going to another meeting at the end of February (they are held monthly in Nelson).
Late last year I also attended a Mulled Wine and Massage evening for parents of autistic children. The idea being to learn simple foot and hand massages to pass on to our children. This was organised by Autism New Zealand in conjunction with Altogether Autism. It was there that I met a Mum whose daughter was exactly the same age as Amy, also diagnosed with mild-ASD. There seemed to be so many parallels between our daughters that it was only natural to exchange phone numbers. The girls had a Playdate over the Christmas holidays for a couple of hours out at my Mum's in Ruby Bay and it was interesting to see how they related to one another. Amy was more verbal than the other girl but she is also more aggressive - kicking, pushing and hitting as she often does when she is overwhelmed/overstimulated and generally just over a situation. But all in all the girls got on quite well.
I found out through the paediatrician that we were eligible for both a child disability allowance (CDA) and respite care. I went into WINZ, filled in some forms, and took Amy's diagnosis notes with me and we were immediately signed up for $81.46 a fortnight. This is not means-tested. The CDA is proving to be very useful for all the additional resources and courses that seem to part and parcel of having an ASD child.
We got a referral regarding respite care through the paediatrician and within weeks a letter from Support Works indicating they were coming round for an assessment. This is simply someone to give us some help with Amy. As any parent of a child with ASD will attest; they are very exhausting children to care for as so much energy is needed to guide and support them. A woman from Support Works came into our home, asked quite a few questions and then granted us twenty hours of respite care for a year.
All we had to do was elect someone we could leave Amy with. We elected our neighbours who live right behind us. They have three children aged seven - eleven years of age and the Mum is a teacher's aide who is currently looking after a severely autistic child at the local primary school. It's perfect. Amy loves going nextdoor (they have a trampoline, a sheep, rabbits, a dog and a cat) and when I left her for her first half hour alone last week I could hear her chattering away non-stop to the Mum. I have a form that is to be sent off at the end of the year clarifying how many hours were used. Our neighbours will be reimbursed at this point.
We will use respite care so we can go out as a couple and for any circumstances in which we need to leave Amy with someone else. Although there are a few adults she knows, most have children the same age or younger which means it is difficult for whoever is watching her.
Child Development Services (CDS) were the first organisation post-diagnosis to make contact. The paediatrician also referred us to them. One of the staff came into our home a couple of times to assess where we were at and what further help might be needed. It was agreed that some help in the Kindergarten would be most benefical.
Amy started Kindergarten about the time we were mid-referral to getting her an appointment with a paediatrician. Once the diagnosis was made and Amy had been at Kindy for a couple of months at Kindy, the teachers were on to it writing a letter to Special Education so an early intervention teacher could come into the picture. They had to kerp a behavioural diary and just after a few weeks at Kindy it was evident that were a few social issues that were of concern.
The early intervention teacher has been into our home three times, asking questions about Amy and playing with her to see she where she is at. She has started observing her at Kindy on a weekly basis in order to determine whether or not she will need a teacher's aid at morning Kindy. She is doing so very well at afternoon Kindy but the teachers fear a longer period of time may result in some disruption from Amy towards the other children when she moves into morning Kindy (which should be within the next three or four months).
Mid-March I am meeting with the Head Teacher at Kindy, the woman from Child Development Services and the early intervention teacher to form a plan for 2009. I am also doing two day-long courses run by Autism New Zealand in March (they cost $30 each per person). The first is called Understanding the Autistic Spectrum: Implications for Learning and the second is Introduction to Advanced Strategies for Autism Spectrum Disorders. I have also requested to do the Early Bird programme which is free for parents of under fives - to get them ready for school. I had to send off an expression of interest form - there isn't a guarantee that we'll get to do that one as it is dependant on numbers.
We recently joined Autism New Zealand (for a $20 donation for a year) which means we will be in the loop regarding upcoming courses, support group meetings, as well as access to an extensive libary of books, audio tapes and videos/DVDs.
Really the last six months are a bit of a blur. It has taken me a while to get my head around whose who with all the specialists - as well as deciphering what their roles are. But it's all starting to make sense. They all want only the best for Amy. We are lucky that she is not yet four years old and she is entrenched in the system. She may not understand what is going on around her yet at the same time, Amy has felt more secure in her social world thus far with the support of all involved.
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