Tears for Amy

Ever since I attended the local autism courses (the week before last), it's like the emotional flood-gates have opened. I am processing so much around accepting Amy's fate while at the same time parenting Amy and dealing with all that her diagnosis means.

I have been afraid for Amy's future. Talks of bullying on the courses didn't help. Apparently those on The Spectrum /with Aspergers are at risk of being picked on, made fun of, and being the butt of silly pranks. Buddy systems and safe places were offered as ways to counteract this. But still.

Amy has just been through a rough phase at Kindy. It was very timely that her IP (Individual Plan) meeting was last week so I could sit down with three Kindy teachers, an early intervention teacher and someone from CDS (Child Development Services) and nut things out. Some changes have been made at Kindy and things seem to be improving. Even so that session was hard to attend. I was grateful for it and it was necessary. But it was all about Amy's negative behaviours so a teachers aide can be applied for when she moves to morning Kindy (next term). It was hard as a Mum to sit there for an hour and a half with five education professionals focusing on all the problems Amy has at Kindy.

For a few weeks at Kindy Amy's behaviour was just getting worse. She was chasing, pushing, and kicking other children a lot of the time. The end of the session was when Amy typically lost it. The teachers start packing up, while the kids get more hyped up and the general vibe is downright chaos. This lack of order sends Amy into a spin. So the easiest thing to do has been for me to simply pick her up a little earlier, before tidy-up time, and take her home.

A quiet corner is set up for her at the beginning of every session which she is encouraged to go to if she's demonstrating that she needs her space. Amy has responded positively to this and has gone there willingly when asked.

The Kindy teachers have also started tracking her amongst themselves, ensuring that Amy is involved in an activity at all times. She needs the adult guidance and company a lot of the time to stay on task and if this need isn't met, she will take her insecurities out on the other children.

All involved are confident that the move to morning Kindy will be positive for her. It is pretty obvious she is bored socialising with three year olds at the moment and craves the social direction and confidence four plus year olds will be able to provide.

Tomorrow Amy turns four years old. She had her fourth birthday party last weekend which went really well. She had a Wiggles-themed party with eight children in attendance (ten if you include Amy and a nine month old baby) and around fourteen adults. Admittedly I was a little anxious as to how things would go given Amy has been in pushing-mode lately when in groups of children. But she was fine. Absolutely fine. I have to pat myself on the back though for organising a party that would met her needs for order and also didn't hype any of the children up too much!

It was two hours long - starting at 10am and ending at noon. I hired a community hall that wasn't too massive - a perfect size for a group of twenty. On arrival there was an activities table set up with Wiggles pictures to colour in, and another table with face-painting so the children were all clear they were either colouring or waiting to have their faces painted.

Once a few children had their faces painted they made their way over to the party table which was set up all ready to go with a heap of Wiggles stuff. Around 11am the cake came out, we all sung Happy Birthday to Amy and then the music was turned up loud for ten/fifteen minutes of Wiggle dancing. After this the children were directed to the activity table where they made featherswords out of a cardboard cut-out of a feathersword, glue and some feathers. We finished the party with some stories in an allocated story-corner (that had books there the whole time in case any of the children needed some quiet time).

I think being the parent of a child with ASD has some advantages. I am good at preempting the behaviour of most children as I can read where they're at through their body language. Yes I'm patting myself on the back again because a lot of the time as a Mum of a daughter on The Spectrum I feel incredibly challenged. Gut instincts have helped a lot but there is still a lot of guessing and experimenting that takes place and things can go horribly wrong.

There is also a lot of spoken and unspoken pressure from the specialists involved once your child is diagnosed with ASD. Some of the advice and suggestions I have agreed with - but some of it I haven't. Amy got referred to a district nurse via CDS because she is still in nappies at lo and behold - four! The actual appointment with the district nurse was awful. It was an hour of being told how to toilet-train my daughter with no consideration or interest as to what we've tried - and why it hasn't worked.

Amy has suffered from constipation for a couple of years at least and the severity of it varies. This hasn't helped with toilet-training. I've always thought her high anxiety levels haven't helped things much in this department. This feeling was confirmed when it was mentioned at the autism course that toileting issues are common for those with ASD.

Amy's back on medication to help her at this point, and I am monitoring her food and drink intake, making sure she gets enough exercise (she needs a fair bit) - basically doing everything I can. Yet I will not take my daughter out of nappies while she struggles to get a bowel movement. I think that is incredibly cruel - but it is what was suggested by the district nurse. An example of a professional who doesn't understand the complexities of ASD. It took us around a year to get her to wee on the toilet and she still needs a lot of prompting. So no doubt pooing on the loo is a little way off.

I do want to get Amy out of nappies asp. I don't want her to be ridiculed or to feel like she's the odd one out socially. She's typically nappy free during the day though. We have a year to get her sorted before school which is my personal time-line for getting a few things on track.

Amy had her last bottle of milk the other day. Once again, a few days off four might seem late to wean your child off a bottle but I prefer the gentle approach with a child who has enough struggles. Maybe I'm a soft touch but I generally check in with Amy before whisking anything that makes her feel secure away. I bought her a new cup for her night-time milk and she is adapting okay. She's missing the bottle but getting there.

I feel a lot of frustration, angst and worry around Amy's ASD and our support crew (of specialists). Many of the support crew are still getting to know her and I've had to allow them to in their own way and time which has sometimes been hard - watching them misreading her or missing big cues that she needs some help.

Because of financial reasons, I am looking at increasing my working hours (currently just working Sundays) which causes me a lot of emotional confusion. I really don't want someone else looking after my Amy as the truth is - no-one knows her quite like I do (except for her Dad of course). But I'll cross that bridge when I come to it.

For now I'm grateful Amy had a good day at Kindy today, a fantastic fourth birthday party and that she's moving forward. I may have tears for Amy but I also have a lot of pride.