It was a busy morning. I was at Amy's Kindy first thing (8.30am) for a meeting with the Head Kindy Teacher and the special education coordinator to fill out the paperwork to apply for the ESW hours (teachers aide) for next term. It is always exhausting tuning into the autistic-side of Amy's personality. To get the funding, she has to look pretty "bad" on paper and no (good) parent likes bad-mouthing their children. The meeting went pretty smoothly. It is good to check in to be reminded of the areas Amy needs help in. She still needs a lot of guidance socially at Kindy though she is thriving there, in her own Amy way.
After the meeting finished I came back home for a ten minute break before a social-worker and a psychologist came round from Tautoko - they provide a service to "Children or adults with an intellectual disability and/or Autism Spectrum Disorder, whose behaviour challenges." We got a referral from Amy's paedaetrician. Today's appointment was an introductory appointment as I won't get a proper appointment for a few months because of a big waiting-list. But today we covered the two major issues we are struggling with with Amy: meltdowns and toileting. We also touched on sleep issues a little.
The older Amy gets the more noticeable it is that she doesn't cry much. Yet, she operates at a high level of anxiety quite a lot of the time. Invariably what happens is the kettle blows and my husband and I are the receivers of this pent-up angst. We have been worried that her meltdowns are getting more aggressive. Apparently this will be looked into more when we have our proper consultation with Tautoko. In the meantime we are to continue doing what we are doing: sending Amy to her room for quiet time when her behaviour is unmanageable. The social-worker also suggested starting a scrapbook with reference to her moods ie: times when she felt happy, times when she felt sad.
Toileting has us completely stumped. We have tried it all - bribes, sticker charts, favourite toys acting out going to the loo, social stories, and a brand-new Wiggles toilet-seat but at the end of the day - if Amy decides she doesn't want to go (even though we know she needs to) - it is very, very hard to pursuade her. The social-worker suggested having a break from toileting as we're all stressed and frustrated with it. Amy hates us being on her back as such about it and we are tearing our hair out trying to understand why a child who knows how to sit on the toilet, pull down her pants and pee just won't do it!! The social-worker said it's a complex issue and very, very common for those on the spectrum.
Sleep-wise Amy has always been unsettled at night. She goes through phases of sleeping through the night but these seem to come and go. As her Mum although it means my own sleep suffers, I am okay supporting her at night (by sleeping in her bed with her when she wakes) because I do think it is anxiety-related. She is still adjusting to being at Morning Kindy five mornings a week. There are social stories we could try to encourage her to sleep alone and a remedy for sleep that we get can get prescribed from the paedetrician called melatonin. Will think about that one - it may be worth looking into.
Some other suggestions made today by the social worker were to get Amy a mini-tramp as she clearly needs to burn off some excess energy. With her mornings being full with Morning Kindy we haven't been getting out as much in the afternoon. She is normally pretty active at Kindy however it has rained for the last three days and I think she's chomping at the bit to have a good runaround (might have to resort to Chipmunks tomorrow - an indoor playground). I'm thinking of re-enrolling her in gymnastics next term. She has done it the last couple of years for a term or two each year and does get a lot out of it (though it is often tiring for me trying to encourage her to join in with the rest of the gym class!)
It's good getting this outside help. I do always appreciate it but it is emotionally tiring as a Mum talking about your child's so-called negative characteristics.
As for the gluten-free diet; things are pretty slow on that front. To tell the truth I haven't really had the energy to make a full conversion. I'm shopping pretty much as normal although Amy has been lactose-free in the milk department and is still on gluten-free cereal. She is eating regular bread though - I haven't yet found a substitute bread that she likes. I'm trying to be as gluten-free as possible at tea-time but things like fish-fingers and bacon and egg pie haven't quite left the weekly menu. I have stopped buying the oven-baked chips though! Amy is one determined four year old and I know what she will eat so it is a challenge trying to think of gluten-free foods that she will like. We're still a WIP around that one.
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