Left Brain Right Brain

Further news. We recieved the panels descision through the post today and it wasn’t good.

Whilst they agree that Megans probably is in need of a Special Needs nursery place, they want to perform an assessment on her. In other words, they’re disregarding the clinical diagnosis given by an actual Doctor who’s spent years in the field and basically saying it needs to be done again. There was no mention in the letter of how long this assessment would go on for, or who the people were who would be carrying it out, or what would happen afterwards.

The absolute worst thing though is the fact that they want to carry out this assessment at a SEN nursery over 11 miles away from us. Neither of us drive so we will be refusing their ‘kind’ offer. Yes, they could offer to transport her by taxi but what parent would be happy about letting their three year old pre-schooler go off with people who don’t know her and whom she doesn’t know? What happens is she needs us quickly? Not happening. The hell of it is is that there is a SEN Nursery in our home town less than 2 miles and 1 easy bus journey away- what goes through their heads?

So, as I say, we’ll be appealing both loudly and constantly. We’ll also be talking to the people at our local branch of the National Autistic Society as they sometimes advocate successfully on parents behalf so we hear.

The ultimate downside to all this is that it will further lengthen the time before Megan gets into the education system. The LEA has the power to refuse to proceed with the Statementing process until a child has been assessed and getting a child with Special Needs into the education system without a Statement is akin to educational suicide for that child. So, thanks very much Stafford LEA.

I dunno, a more cynical sould might suggest its all a cunning plan to protect their budgets- less kids with Statements equals less expensive educational resources needed. I wrote to my local MP awhile ago outlining the issue too- no response from him whatsoever. Think I’ll try the local papers too. Its appalling that some nameless, faceless, totally unaccountable entity can meet in secret, refuse to listen to either the child or the childs parents then make a decision based on one half hour visit which totally ignores the two week assessment carried out by specialist child development doctors, speech therapists, play therapists, SEN advisors, social workers, GP’s, SEN Health Visitors etc.

I meant to type this in the other day but I’ve been under the weather a tad- as is my wont I’m wide awake in the middle of the night and remembered this.

If you remember we’d had the EP’s report back awhile ago. Well, we hadn’t heard anything so I emailed the guy (these people are not always happy to make it easy for you to contact them so my evil genius internet persona took over and I hunted around a bit, sacrificed a chicken or two and discovered his email address.

I sent him a very friendly email saying hi, long time no speak, what progress are we making and got back that he wasn’t in charge now- he was simply a spear-carrier for his boss and that she would….

collect together information from other sources (e.g. medical reports) and then use the information to decide how best to proceed. She will write to you once she has been able to make a decision.

Which started the old alarm bells ringing….She’d make the decision? And then she’d write? Hmmm. I think not. Luckily the EP had BCC’d his boss in to his reply to me, so with judicious use of Header editing in Outlook, I got her email address too.

I sent her a very pleasant email asking her what teh score was and why no-one had thought to ask us, her parents, what was an appropriate way to proceed was (I know they’d done the EP assessment but half an hour’s visit ain’t comprehensive in my opinion). I was very friendly and polite and got this reply-

**** report on his observations of Megan was considered by the District Panel at the end of last term when it was concluded that an assessment place at a special needs nursery may be appropriate for Megan.We were however unable to contact the nursery before the school holidays to discuss this possibility and the likelihood of a place with them.We have written and expect a reply at the begining of the new term. If a place can be identified we will then contact you to invite you to visit . A statutory assessment would then be initiated to inform the decision as to whether Megan equires a statement.

So I’m now thinking “Panel? What Panel?” Neither I nor Naomi had been informed about any Panel. And I’d love to know how they reached their conclusions based on one 3/4 hour visit.

This bit…

A statutory assessment would then be initiated to inform the decision as to whether Megan equires a statement.

…sounds particularly ominous. SO, I wrote a reply containing this…

Just to clarify this, **** informed us that his assessment was the beginning of the Statementing process- we were not aware that it was still under discussion as to whether this process would be initiated at all. We’re aware that Statementing is a vital part of the educative process for kids with special needs so we’re obviously keen to make headway with this part of the process ASAP- we’re having some discussion with the NAS (National Autistic Society) regarding this process to aid our understanding so anything you could offer on the way this process works would be greatly appreciated.

I’m hoping she’ll sense that I’m not to be trifled with- I’m thinking she probably won’t though. I’m thinking we’re going to feel pretty damn messed with all-round by the time this gets sorted.

Anyway- no response yet, so I’ll follow up with a adulatory email on Monday morning.

Just thought I’d update everyone on how the Eye Q progress was coming on.

So far, as per the previous thread, we’d tried adding it to hot drinks- with little success. So we’ve now swapped to using it in a sugar-free squash drink which she takes with no problems.

As to its effectiveness, we’ve noticed Megan has definitley started to maintain eye contact for a lot longer than she used to. She’s also started using words more- in a ‘mimicky’ way mostly but also in an appropriate sense (I got her a cup of tea yesterday and she said “fanks”).

This is in no way ‘scientific’ or even conclusive- it could be anything but taken under its owns trength, I’d definitley say that Eye Q has made a positive difference to Megan.

Yes!!! Megans speech therapist appointments finally through. Its for the 2nd September.

We’re made up about this as we’re very keen to get Megan started. We think there’ll be significant improvements in Megans speech as when she was at the assessment centre, just a two-hour visit from the Speech Therapist had Megan showing improvement.

Still no news on the other promised specialists as of yet. Time to start getting even more assertive methinks.

After hearing people mention this stuff we decided to buy some and give it a try.

Its supposed to enhance or help kids with ASD to concentrate and communicate- althoug it must be stressed that its hearsay not scientific fact.

So we bought the micro-capsules (aparently the liquid is foul) to sprinkle in Megans yoghurt etc. Unfortunately Megan’s cottoned on and refuses to eat whatever we put the bloody things into!!

So, we’re going to have to think laterally. She loves cups of tea so I’m going to try and ‘melt’ each dose into her tea and pray it doesn’t alter the taste significantly.

Had a fantastic weekend with Megan for numerous reasons.

Firstly, Megan and I went over to my Mum and Dad’s for on Saturday morning/lunch whilst Naomi had a break and she was obviously happy and content- lots of smiles, hugs and kisses for both my parents- which is a rarity for Megan as she’s fairly stand-offish. It made their day I think.

Secondly, she slept another night through without the Vallergan on Friday/Sat night, which gives us hope- we really don’t want it to become a permenant addition to Megs life. Have to be realistic though- she woke up the Sat/Sun night 😦

All in all though, a great, enjoyable weekend.

Well, it came through the post today. Impressively prompt I must say.

The majority of the report was a simple re-affirmation of what we had gone through with the EP on the day of his interview. The important bits were in his conclusions:

That Megan should be placed in a ‘nursery provision with adults used to working with children with complex communication and social interaction issues.’

Teachers should liase with the Speech and Language Therapist to improve communication skills. Methods should include:

Using TEACCH symbols and timetables to make the day predictable for Megan, use the Picture Exchange Communication System to help Megan understand the importance of asking for things, teaching specific words and phrases to use in a proper social context, use ryhmes and songs to produce predictable patterns of language as a communicative aid.

All sounds very laudable and worthy and I agree with the measures as proposed but I’d like to see them made a bit more ‘real’ i.e. I’d like to see an example curriculum of a typical day in Megans nursery education using these tools. We’ll no doubt say that in our response to the report.

Megan hasn’t slept properley since she was about a year old. When she went for her two-week assessment, one of the things we wanted sorted out as a priority was Megans sleep as both Naomi and myself were close to exhaustion. Megan wakes for approx 2-3 hours every night between 1-4am.

One of the things it was suggested we try was Vallergan. This is an anti-histamine based drug used primarily to treat excessive itchiness in Adults and Children with ailments like Eczma or Psoriasis- the side effect of the anti-histamine is that it causes drowsiness.

We thougt long and hard about trying it. We were loth to give Megan a drug that wasn’t having an obviously beneficial effect on her- i.e. she wasn’t ill as such. However, it came to a head for us after an intense 3 week period of Megan refusing to go to bed intil gone 10pm, then waking up at about 1am and staying awake for another 3 hours, then waking up again at around 6.30-7am. We decided to try it.

It worked perfectly- Megan slept straight through. We gave it to her the two nights after that, again sucessfully, then gave her a night off it which once again she slept straight through. We’ve heard that kids become resistant to it so we hope to keep up the on/off treament and hopefully remove it altogether from her life. I’ll let you know how it goes.

Megan had a visit from an Educational Psychologist today. Its part of her ongoing assessment/getting ready for education episode.

He was a nice bloke who didn’t try to hard to ingratiate himself with Megan (behaviour thats always a guarantee of a few moments of awkward silence on the ingratiators part- Megan couldn’t give a monkeys). He explained that his data gathering methods would be two-fold.

First he would watch Megan- how she played, what she played with, how she interacted with Naomi and I etc. Secondly, he would be asking Naomi and I questions about what Megan knew in the three key areas of communication, development and interaction. The whole thing took about half to three quarters of an hour and we never felt pressured or compelled to defend aspects of Megans behaviour, which I can understand parents needing to do in some situations.

The kind of questions we were asked were fairly routine ones that we’ve already become used to hearing from Health Care professionals- does Megan talk? How does she communicate? Does she play with dolls? etc etc. All questions that were easy to answer.

All through this Megan was quite happy to do her own thing (as she always is) in that she would come and hug us or watch the TV (the Sky Guide-channel 998- is the channel du jour at the moment) or sing a song or bash my keyboard etc.

The upshot of all this was that the EP said he would write up a report based on his observations and that his recommendations would be to get Megs into a special needs nursery ASAP, which dovetailed nicely with what Megs Health Visitor felt was best and we should get Speech Therapy sorted as a priority-which we were happy to inform him we had well in hand.

I asked about a Statement of Needs for Megan. A Statement is apparently a very vital document that details what each child should recieve in terms of their education. It is vital that this Statement be precise and detailed with no vagueness in either provision or intent. The EP told me that this meeting was the first step to getting the Statement drawn up so I’m hoping this is the case- apparently getting a Statement is notoriously difficult so I’m still a bit wary.

I’ll keep this blog updated with the results of the report as we get it.

Looks like a good interesting source of data here.

Its basically an online library but with a section that concentrates solely on ASD.