Sunday, 20 July 2008

Right up to date

I realised last night I forgot to mention the cause of Millie being so ill - it was a blood disorder called ABO incompatibility. In Millie’s case it’s an AO incompatibility. I’m O+ and she is A+ and for some reason my blood cells were killing hers off. It doesn’t affect the baby in the womb, it only kicks in once the baby is born. In the long term if Millie ever needed a blood transfusion it would have to be very careful cross matched to avoid it happening again.

When my next baby was born she had the same thing but because she was checked for it at birth it was treated at an early stage. Neither of the following two were affected.

So anyway, I’ve been convinced there is a problem, and the word autism often reared its head in my mind. We were convinced she was autistic as she showed some of the signs of it - often she would do things that were just so autistic but then she was often perfectly “normal”.

I’d resigned myself to never knowing the truth, to always having the nagging doubt in my head that her brain had been affected in some way but never having an answer. A while ago we had a meeting at school about Millie as she had been on something called the “school action” programme. I have to admit ‘m not entirely sure what it is, but basically it’s for children who need extra help. They did acknowledge that she had a problem settling into her new class every September and that they would try and help her settle this year. Every year I has taken her until Christmas, and she’s been very hard work until then (mind you, she’s hard work at the best of times). Last year her teacher was fantastic, knew how to handle her, had good strategies to help her cope with going from one lesson to another and she was pretty good.

Every year the school has moving on day where the children spend the morning with their new teacher in their new classroom. Sadly, no one had briefed her new teacher on the ways of Millie and she lost it. Big time. I’m not entirely sure what had happened but the poor man ended up having to get the SEN team in to try and calm her down but she was so far gone even they couldn’t settle her - they are fantastic with her so it must have been really bad. In the end they called us to go and collect her. I must add here that her new teacher is very experienced and it really wasn’t his fault.

Of course she was fine when we picked her up and took her home. She hates school and desperately wants to be home educated. I think home is the best place for her and hate myself for not having the confidence to do it. We did take her out of school a few years ago and it was the best thing we did. She was so much happier, she was laughing and smiling so much more, but we didn’t really do much learning. I know it was what she needed but I did feel a failure and it didn’t help I was about to have a baby. I think we will probably end up home educating her again sometime soon its just taking that step that is so scary at the moment.

For us that was the final proof we needed that there is a problem. It is such an autistic thing not being able to cope with change and we decided we would go into school and speak to them.
The following afternoon we got a phone call asking us if we’d go in to talk to them about transitioning Millie into her new classroom. We were pleased as it meant we didn’t have to make the appointment and that they were taking things seriously. I was going to ask if the SENCO could come in to speak to us as well and was very pleased when we arrived and were asked if it would be ok if she attended.

They told us what had happened on Wednesday and that they’d had more problems with her on Thursday as well. It had obviously affected her badly. We were asked what our opinion of the situation was and I told them how I was convinced she had either autism or aspergers and this was just more proof to us. That was exactly what they were going to tell us - they were worried we were going to be those parents who deny there is any problem with their child so were very pleased that we felt the same. I feel that one of the problems is they manage her so well they don’t often see the odd behaviour and it took that one day to remind them that there is a problem.

We were advised to take her to the GP and ask them to refer her to a paediatrician for a diagnosis and the learning mentor (who has been fantastic) wrote a letter to take with us.
We’ve now had that appointment and the GP agreed that she seems to be autistic and referred her. However, you don’t get an appointment with a paediatrician, you get seen by an adult psychiatrist who spends time at the house observing the family. This sounds a bit scary. I know they’re not coming to make judgements about the family but you still wonder what they will think. We’re now waiting for them to get in touch but it could be a few months.

After spending years desperately wanting someone to listen to me, for someone to believe me it’s suddenly sunk in. My little girl is probably autistic. I looked at her one day and just wanted to cry for her. I’m just glad that it only seems to be mild and I don’t think it will affect the rest of her life too much.

We’ve done some reading on aspergers - we think it’s more likely that she’s got aspergers because academically she is doing so well - and some of it has made me sad. One book, “Martian in the Playground” by Claire Sainsbury, describes how the author felt as a child and that made me want to cry when I thought about Millie feeling like that. It was a really interesting read though, and worryingly some of the traits applied to me!!! A lot of it also applies to Bethany, the eldest. It’s too late to get her diagnosed I think as she starts her final year at school in September so she wouldn’t get any extra help now. But I plan to go into her school after the holidays to talk to them and see what they can do for her to help her through the last year and her exams.

So that’s where we are at the moment. Its just waiting now. In two days the children finish school for summer and we have 6 weeks of nothing much planned to look forward to. I’m really looking forward to it, not having to get up early in the mornings, no packed lunches to make, no school run to do, no homework. And we can go out for the day without needing to be back for pick up time. It’s going to be lovely. I hope the weather stays nice for us but even if it doesn’t we can do crafts and things indoors.

I’ve got lots of plans for things I’d like us to do and make but whether we’ll actually get round to it remains to be seen of course. Every year I have lots of plans and never quite carry them out as the children are having too much fun playing.


Laura said...

Just came to take a peek at your blog after seeing the link you put on GP. It takes strength to share your story so openly.
School Action is the first stage if a teacher has concerns, the next being school action plus - usually when external bodies are involved. Millie will likely be classed as school action plus when the psychiatrist etc become involved and start communicating with the school. Hope that is helpful. I have taught autistic children so if there is any way i can be of use do let me know. x

nocton4 said...

Big Love Lucie, for getting this out.
Lots of respect to you .. keep blogging ... we're listening.