Left Brain Right Brain

I launched my campaign website the other day.

Basically, after the long drawn out drama with the LEA over Megans Statement I was amazed at the fact that there were so little dedicated autism units in the UK.

Turns out (if my calculations are right) that less than half of pupils with a diagnosed ASD could get access to one of these units. This just didn’t seem right to me. Some areas of the country have no such units at all!

To me this seemed liked a lottery based on money rather than need. What happens to the kids who need a specialist place when all the others are taken?

Parents of non-disabled kids have choices about their childrens education. they can pick and choose the schools their children attend to a certain degree. Parents of disabled kids (particularly autistic kids) have no options- we have to fight tooth and nail just to get an education, and 90% of the time thats a compromise.

If you feel, as I do, that kids should be educated first and foremost on need then please head on over and sign the petition, send your MP and local council a letter and link to my campaign website if you have a website too.

For the last 4 days or so, Megs has started to use a potty to go for a wee. This, for us, is momentous news as we were begining to think she’d never be out of nappies. At last her trousers and skirts look like they’re supposed to instead of her having an arse like J-Lo’s!!

Nappies aren’t cheap for a 4 year old (especially one who takes clothes for a 9 year old!) so thats another plus point.

Obviously the biggest plus point is that it marks a real piece of development for Meggy. She’s not yet ready to trust her throne-like potty (thank you Occupational Therapy!) for no.2’s just yet but we’re working on it. It would be a real plus if she could be out of nappies by the time she starts school in September.

She’s also very much more chatty then ever before at the moment. You get used to not getting your hopes up with your ASD kids sometimes but what the hell, she’s developing a lot and thats something to be pleased about, so I will be!

The BBC are reporting that the UK Gvmt are scrapping a mercury based vaccine due to a US study finding links to autism in its use.

The new jab (minus the mercury) will form part of a new 5-in-1 jab to begin next year.

I’m sure that I’m not the only parent of an autistic child that just doesn’t know what to think anymore. We believe that the 3 in 1 jab Megan had triggered her autism and we also believe that there was mercury used as a suspension fluid in her DTP jab.

So why exactly is the Thimerasol (the mercury preservative used in the jabs) so bad in the whooping cough vaccine that it warrants removal of the vaccine and yet the Thimerasol in the DTP (and plenty of other) vaccines is not considered an autism causative?

Maybe I’m missing something here but the evidence for me is mounting that the Gvmt in this country need to urgently investigate mercury based vaccines of all kinds.

Today we got Megan’s finalised Statement of Needs. To say we’re pleased is an understatement. The main points are that:

1. Everything is now quantifed properly.
2. Megan has a phased-in curriculum, allowing her to take a few weeks to build up to staying for the whole school day.
3. Speech Therapy is now specified in the correct section and the Health Authority are now to be officialy consulted and kept in the loop but the LEA have acknowledged that they themselves are responsible for providing the therapy.
4. 32.5 hours additional support per week is now set in stone in her Statement.

All in all, a satisfactory conclusion that was bloody difficult to get. It still appalls me that parents are so neglected by Education Authorities and are actively excluded from having input at certain stages. There needs to be a marshalling of opinion regarding this I think. Do I feel a campaign coming on???

Yesterday, two members of the Autism Outreach Team came to talk to Naomi and I and observe Megan whilst she was at Pre-School.

They both seemed very nice, if a a trifle fixated on PECS (Megan’s speech therapist is not convinced Megan would benefit from PECS). They later met Naomi at what will be Megans Primary School and the three of them met a few of the key teaching staff who will be with Megan- her new form tutor included. Apparently, Megan’s classroom assistants have been appointed and are awaiting clearance hence they weren’t able to attend yesterday but The Autism Outreach Team have scheduled a series of appointments with the school to train the staff in ASD issues.

We’re both hoping that Megan gets a chance to meet her two assistants before term time begins in September as I think it will be very hard for everyone if Megan just ‘goes in cold’ so to speak.

Apparently the school also told Naomi that they’re recieved a copy of the draft Statement- which is more than we have!! Seems like some more LEA-bashing is in order!

And so, we’ve now submitted the final parts of our thoughts on Megan’s Statement back to the LEA, we’ve confirmed we’d like her to go to the mainstream Primary School we specified in that Statement and they’ve confirmed they’re advertising for someone with SEN experience to fill 32 and a half hours a week.

The next steps now are to liase with Autism Outreach Team who are helping us and the school formulate a plan of change so that the transition for Megan goes as smoothly as possible. This will include training for all teachers and a phased introduction for Megan as well as the instigation of her Individual Education Plan.

So far, so good.

Yesterday we went for a look around the school we hope Megan will be attending. We also had a meeting with the Headteacher and a representative from the LEA.

The school was great. I downloaded and read the Latest OFSTED report before we went and it was excellent and paid particular note to how well they meet the needs of kids with SEN.

When we began the meeting it became clear that the LEA rep and the Headteacher had had a little meeting of their own prior to our arrival and the LEA rep had obviously been quite negative about Megan as the Headteacher started off by saying that he didn’t feel the school could meet Megans needs but that if we chose to send her there the school would of course welcome and do their best by her. To be honest, thats fair enough at least he’s being upfront but Naomi and I were irked that this LEA rep had obviously had her 2pence worth without any comeback from us.

Naomi and I were quite forward in explaining how much Megan had changed in the last year and that we didn’t feel that one 40 minute assessment over a year old was a good indication of where Megan is now.

So we moved on and then he said the magic words:

…the LEA are prepared to fund a special needs worker(s) for 32 and a half hours per week if Megan attends here.

Fantastic! Thats exactly what we wanted- all we need to do is not get too excited and ensure that this is documented in her Statement, not just implied.

We really believe that this will be a good school for Megan. Its local, has an excellent rep for SEN, gives her a chance to mix with both mainstream and SEN kids and she has the help she needs to make a go of it. At least she now has a fighting chance- if it turns out after a term or two that its not working we can think again. We’ll also be phasing in her attendance rather than all day every day straight away which makes good sense to us.

So, great news!

Today, Megan attends a pre-school with kids her own age for the first time.

This is due to her Play Therapist pushing and pushing for it and getting it. Basically, instead of being seen at home, Megans Play Therapy sessions will now be at this local pre-school. Naomi will go along with her as well.

Best of all though is the fact that finally she will be interacting with kids her own age so when she does start school proper it won’t be totally alien territory to her.

I really hope this turns out well. It probably will because the LEA aren’t involved in any part of the process. Amazing how brilliant the Health Authority is and how shit the Education Authority is in Staffordshire.

Add this to your signature for every forum, newsgroup, blog you have. Mention it to your family and friends and inform the teachers at your kids schools- from the 17th-24th May its Autism Awareness Week.

Naomi (my better half who in an amusing but unrelated event took an online test to find out what sort of leader she was recently and came out as Hitler 😀 ) used to work at a Health Clinic as a receptionist. It was a bit ‘new agey’ this place and offered chiropracters, massage-therapists, hypno-therapists and homeopathists.

As is my wont I sneered at most of these treatments without actually trying them or even reading up about them. Yay me.

Anyway, when Megan was diagnosed with ASD, Naomi kept in touch with the homeopathist who she used to work with and this homeopathist, Karyl, began to treat Megan.

I was totally unprepared for how succesful it was. I mean I was really shocked at the difference. All I could see was Naomi giving Megan various combos of these little sugar pills but gradually, over time, Karyl got the balance right. It still needs tweaking as Megan grows but the Homeopathic regime Megan is on has cleared her body of a lot of the toxins introduced by the immunisations she had and-best of all- has helped her settle back down into a much more stable sleeping pattern. Megan has her Homeopathic stuff twice daily with Eye-Q and a multi-vitamin and the combination really has worked wonders on her patience, temper, perception, concentration, cognition and general happiness.

I’d strongly recommend Homeopathy as a treatment. If anyone wants to speak to our Homeopathist in particular, let me know by posting here and I’ll send her details to you- she really has changed our lives with Megan.