In the last of this guilt-ridden mass update, I thought I’d let you know how Meg is herself.
Basically, she’s great. Her speech is gradually improving- she’s using words more and more often although we’re not convinced she see’s the need to talk much!
We’re trying to put together a plan for her to learn through play a la Son Rise and our Play Therapist. Could take years but it’ll be well worth it.
You may, or may not, have heard of Son Rise.
Its basically revolves around the concept of unconditional acceptance and bringing the child out of isolation. Looks quite interesting. Unfortunately its American and costs $lots$. They do run courses over here though and some people have had some joy getting their LEA to fund or part fund their course. Have a look on their UK forum for examples.
We’re going to have a go at getting some funding for it as we’re now seriously considering home educating Megan, at least part of the time. This is due to our bad experiences with the LEA mainly. We’re a bit concerned about the social aspect of it but at the end of the day we’ve got to do whats best for Megans education as it seems the LEA aren’t going to take responsibility.
Other options include leaving our LEA area and moving somewhere with a better attitude.
OK, so I haven’t updated this for far too long. I could wheel out excuse after excuse but the truth is that both my arms were chewed off after a week long fight with 6,291 aliens that landed in the back garden and who abducted me and tried to, um, probe me- hence the week long fight.
Honest.
All Party Parliamentary Group on Autism (APPGA) launched their manifesto last year.
Please ask your MP to support families blighted by ASD by asking them to add their name if they haven’t already.
Thanks.
Naomi today had our first visit from an ASD specialist. I don’t want to put his name on the Internet as not everyones happy with that.
I wasn’t there as I was at work. Apparently, after a shaky start he was a nice, decent guy and basically what he doesn’t know about Autism isn’t worth knowing.
Naomi thinks he came with a few preconcpetions. Basically, experts aren’t prepared for people who stand up to what they think should happen and get a bit annoyed. We think this has happened with Megans Doctor. He gave Naomi a bit of a hard time recently because Megan wasn’t enrolled in a school yet. Our answer to that was ‘find us one we approve of’. Just because Megans Autistic doesn’t mean we’ve any intention of sending her somewhere thats not up to scratch. We’ll tutor her at home before we let that happen. Not that we think it’ll come to that.
So, anyway, along comes this guy today with our Doctors judgement ringing in his ears no doubt, but after Naomi explained to him that we were just as eager as our Doctor to get Megan a place, but that second best wasn’t going to cut it for us and after Naomi explained our horror-show at the school Megan did (vey briefly) attend, he actually started to listen and communicate.
Naomi liked him quite a lot and thinks he’s obviously very knowledgeable. He didn’t push Megan and is obviously very comfortable around her (he also said she was beautiful- which of course she is!). Hopefully he can give us lots of tips and info about behavioural issues, sleeping, toilet training etc. Lets hope now we’ve persuaded him we’re not neurotic psycho-parents he’ll be a good resource.
Its been awhile since I posted to this blog. This isn’t because our lives have been havens of peace and quiet but rather because we’ve been too damn busy.
Things that have happened/are happening are:
…and also her last there!
When we went for a look around a week or so ago, the regular teacher was not there as she was attending a funeral so yesterday was the first time we had met her.
We’d really liked what we’d seen on the day the teacher was absent and were very excited and keen for Megs to start.
However, yesterday was a totally different story. When we got there, the teacher insisted on taking a register- no problem for mainstream kids but for disabled kids-particularly those in the ASD spectrum- a 15 minute register taking, including the teacher singing everyones name in turn is simply stupid.
The kids were bored stiff and consequently a few got fidgety and went after toys/books etc- only to get told off by this teacher and forcibly returned to their chairs. This spun the whole farce out over an additional few minutes.
Next up was painting- however each child was only allowed 10 mins at the painting and consequently, each child was again upset after being removed from the area. So they were taken to a ‘sensory room’. For those unfamiliar with such things, a sensory room is basically, lots of soothing lights/water/music combined in a softroom. All the kids absolutely love this. But- not for long- 10 mins and they were (again, forcibly) dragged out.
Now they were all sat at a table and asked to request a drink and piece of fruit. No problems here and possibly the most positive thing we’d seen.
After this, the kids were allowed out to play in the playground- at three times during this period Naomi and I were left alone with the kids- not that we mind but for all they knew we could’ve been anyone! I watched a little boy (a mischevous little sprite with ADD) push Megan over 3 times (he got a whack for his trouble- she’s a big girl, our Megs) and the teacher didn’t spot this once!
Finally, the last ‘activity’ of the afternoon was watching Tom and Jerry cartoons. Not exactly what I had in mind for Megs’ education.
One of the things that I found most disturbing throughout this whole afternoon was that there was another little girl a year older than Megan who was almost identical in terms of how she behaved and her disability and not once-not once!- did anyone speak to her for the whole time we were there other than to ask her what she wanted to drink. This littel girl was far from stupid and knew exactly what was going on. I called her name when they were all playing outside and she came straight over to me and sat smiling with me on a bench and we played with her ball together- I felt so sorry for this neglected child.
When we left (we declined the offer to attend a 20 minute ‘assembly’) Naomi and I were totally shell-shocked. Kids need limits and they need to be given rules and boundries and these things need to be enforced but this was madness in our opinion- the kids for the most part, when they weren’t crying were totally silent. Megan kept up a steady stream of chatter all afternoon- it wasn’t too hard to imagine her falling completely silent after a month or two of this educational establishment.
So- back to the LEA we’ll go and the whole merry go around will start again no doubt. We’re so very disappointed. This took absolutely ages to sort out and we really felt we (or Megan) was on our way. Ah well.
Gareth, one of the founders of ASDFriendly, reported that there was an article in the Times documenting Simon Murch’s total turnaround on his previous stance on MMR.
Murch was one of the original team that discovered a link between the MMR jab and Autism. He’s now claiming that:
(there is)…unequivocal evidence that MMR is not a risk factor for autism.
This is somewhat suprising turn around from Murch given his previous convictions.
…Megan likes:
..and hates:
Finally, some upbeat news.
We went to see an Special Educational Needs school yesterday, based in Stafford. It was exactly what we wanted. The staff were committed and knowledgeable, the other kids were obviously learning and enjoying being taught and they had plenty of ASD specialists amongst the faculty.
All in all, this was a fantastically positive visit.
We contacted the LEA today and told them how we felt- that we would really like Megan to go there and that we felt it would be a very positive start to her schooling.
The noises back were very encouraging with the case worker agreeing that the provision should be 2-3 mornings a week primarily and building up from that next September. Best of all was the case worker saying that this should be the first step to Megan being assessed for a Statement- in case you’ve come on this halfway, a Statement is a massively important piece of literature that is an ambiguity-free document detailing exactly what a child requires from their education. Placing an Special Educational Needs child into a school without one is educational suicide for the child concerned. So, we’re very pleased that we’re getting some movement on this issue.
A potential fly in the ointment is the possibility that Megan may lose her current Speech Therapist. This would be a blow as Megan has bonded well with her and ASD kids are notoriously stand-offish. This has yet to be confirmed however and you can rest assured that we will fight it all the way if it is mooted.
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