Left Brain Right Brain

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:

1. New job for me
2. Naomi been unwell.
3. Megans Vallergan increased
4. Us given a ‘telling off’ for not forcing our daughter to go to an unsuitable and uncaring school.
5. An appointment coming through for a behavioural specialist.
6. Megans doctor saying he wants her to have blood tests and a EEG scan for an unspecified reason. We’ve turned this down until someone can give us a straight answer as to what they are actually for.

…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:

1. Sky Guide on interactive mode (Channel 999)
2. The first 23 seconds of ‘When you’re looking like that’ by Westlife on DVD
3. My new Computer Arts magazine
4. Single Race mode on Burnout for the XBox
5. King size balloons
6. The repeating trailer on CBeebies (shown for hours before 6am on Cbeebies (Channel 617))
7. Using her new felt tips to achieve an authentic Native American/Adam Ant crossover
8. Singing the chrous to ‘Sundown’ the new S Club Juniors ditty
9. Prodding my PDA
10. Not sleeping

..and hates:

1. Thomas the Tank Engine videos that take too long to rewind
2. Tweenies going ‘Poperoony’
3. The little decorative bits of material that adorn (or used to) our sofa
4. Take out menu’s
5. Having her hair brushed
6. The men digging up the bridge rather noisily that we have to walk past to get to town
7. Spaghetti hoops
8. Cushions
9. The pointless free sheet thats news-free that drops through the door every Friday
10. Shockwave.com being unavailable due to stupid bandwidth problems at their end

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.

I think its way past time that I had a self-pitying rant in which I bemoan my lot and generally indulge the more challenging aspects of my personality.

There’s a good chance this will include foul language so be warned.

Do you know what its like to live with a 4 year old with ASD? If you’ve ever had kids then there’s a fair chance that you do. Remember that awful, exhausting, emotionally scarring period after they were born? You know- when they woke every four hours at all hours of the day and night and they screamed until you worked out by a process of elimination what the fucking problem was? Lasted about 6-8 weeks right?

Well, when you’re the parent of an ASD child you can extend that period from 6 – 8 weeks to about 5 years. Do you remember how utterly wrung out you were? It felt like just getting out of bed was a major chore didn’t it? Going to work was a living nightmare as people expected you to be diligent and work hard- bastards! Now imagine how it would feel if you had that head swimming, muscle aching, bewildering period go on for years.

Not nice eh?

If you haven’t had kids then you’ll have less of an idea. There must however have been a period or time in your life when you were so exhausted that even your thought processes seemed to want to have a lie down. Thats how having a child makes you feel for 6-8 weeks. Now read the above paragraphs again.

This prolonged period of sleepless hell has, I’m sure, resulted in me curtailing my career to a large extent as Naomi and I simply have to take things with Megan in shifts. After nearly 4 years, if we didn’t then one of us would’ve collapsed.

Here’s an small example of our nights.

8.30pm Megan finally drops after we give her some Valergan (this is a drug- no we’re not happy about drugging our daughter either but what the hell do you want us to do?).

We watch TV for half an hour and try to relax enough that we can unwind and (in Naomi’s case) collapse into bed about 9ish or (in my case) jump on the PC and knock out some design work till around midnight.

12.30am. Megan wakes up screaming. She’s had a nightmare- probably because I shouted at her before she went to bed as she was eating bloody play dough again. Megan doesn’t communicate well so the concpet of ‘its only a dream’ that you could happily sit down and explain to any other child doesn’t wash with Megan as she has no idea what a dream is. SO, we have to wait it out- she’s really upset and cries (real upset, frightened crying) for about an hour- all this time we’re trying our best to calm her down and settle her as she screams, terrified.

1.30am she calms down enough that I can go to bed satisifed that she’s OK. Naomi sits up with her.

About 3am she droops and Naomi takes her back to bed but Megs doesn’t settle and Naomi has to lie in her room with her until 4am, whereupon she finally goes back to sleep.

7am she wakes again and I get her up and watch her.

And thats one of our fairly typical nights. Distressing and exhausting. We love our daughter and do not resent her one bit but sometimes we wish that either the world was more understanding of parents in this position and would cut us some financial slack- enough that we could both look after her properly or that someone somewher would invent a harmless, assured way of getting Megs to sleep every night- Hell, just a couple of nights a week would be better.

Rant over.

So, today was the day Naomi and I went to check out the Nursery the LEA had recommended Megan goes to.

It’s a lovely nursery- no question. The staff are dedicated and knowledgeable about Nursery education, the areas reasonably nice and its fairly accessible. However, it became clear during the interview with the Head Teacher that our case worker at the LEA had been ever so slightly economical with the truth regarding Megan- either that or she didn’t know and couldn’t be arsed actually finding out.

A small example- the Nursery concerned don’t have a nappy changing facility. Megan wears nappies. The EP who did the assessment noted this fact on his visit. Conclusion: The case worker goofed. Another example- the Nursery itself is a mainstream one. Putting aside the fact that both the CDC and the EP recommended an SEN place for Megan, we thought this would be no problem as obviously (ha!) either the Nursery have enough staff to ensure someone would be allocated to Megan or staff to pupil ratio would be low enough to make this requirement unecessary. Wrong. On both counts.

Anyway, when we got back (bless their hearts, the Nursery still bravely offered us a place but it was obvious their heart wasn’t really in it) I phoned the case worker at our LEA and put some of these facts to her. She ummed and aahed a bit so I insisted we arranged a meeting to thrash this out. Which to my total shock, she agreed to!! She’s even involving her line manager!!!!

I think its time we involved our local Parent Partnership in this as we hear they can be very good mediators and we just want this sorted.

The award winning author Nick Hornby denounces the Government for failing Autisitc kids via a ‘hostile’ LEA.

Its tremendous that someone as high profile and quick witted as Nick Honby has spoken his mind on this issue. In this matter he speaks for every parent of a disabled child who has to practically fight their LEA to ensure the child gets a fair and properly supported and funded education.

Oh and read right to the bottom of the article to read quite the most pathetic and weak excuse/retort from a Governemnt minister I’ve ever heard since Blair told us that Saddam ‘must have moved’ the millions of ton’s of WMD.

More details here

OK, just to bring you up to date, as per the prevous entry: Naomi had written to the LEA stating that we didn’t find a 23 mile journey acceptable for an Autistic 3 year old.

So, they wrote back to us after a few days offering us a place at a non special needs nursery in Stafford. Whilst it isn’t specifically geared up for non-SEN kids, it is staffed by teachers who have experience with SEN kids, so we’re hopeful.

We’ll be going along to visit the place soon hopefully. I’m a bit under the weather at the moment but as soon as I’m better, we’ll go have a look-see.

Naomi’s sent our reply, indicating our unwillingness to make Megan travel with strangers 24 miles a day at the age of 3 to the LEA. Lets see what they make of it.

We’ve also contacted the National Autistic Society to see if they can use their advocacy skiils. Still no reply from our MP.