Left Brain Right Brain

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.

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.