The fight to get it right

27 Jan

It’s not easy being a parent, the choices we are faced with can be overly overwhelming. For our choices impact greatly on our children. We are forever making decisions for them, sometimes it’s done with ease… What to dress them in as little ones, what to get them for Christmas & birthdays, what time is bedtime and how much pocket money to allocate. Other times these decisions are far bigger… choosing a doctor, dentist, vaccinate or not vaccinate, school placement, diet, when to start increasing independence… Although many parents find these decision hard, having to make them for a child with AS or ASD is daunting. Choosing the right dentist for example… If you get this wrong and the dentist is somewhat ignorant when it comes to AS/ASD the impact on the child can be huge… a display of public meltdowns everytime they have a checkup isn’t desired. having experience on parenting a child both on and off the spectrum has highlighted the difference my decisions can have on the children.

I now hold this paper in my hand that is full of decisions that would make up my child’s educational further. Yet these were decisions that were not made by me but someone who had never even met my child but was based on the observations made by others and the conclusions they drew. Some of this came from doctors who may not know us personally but on a professional basis for sometime, others were educational professionals who to be honest don’t really know him at all despite his existence at his previous mainstream school for the past five years, the EP who had only meet him the once and an AWO who had always considered it her lifes mission to prosecute me for non school attendance instead of looking at the “whole” picture (how helpful when your little aspie is ripping your hair out from the roots as u try and get him out the street door to go to school!) Then you have the outreach workers who have met him once or twice and despite giving such good advice u still feel a tad concerned as your the parent and it is out your control. The only chance I had to voice my concerns was through the parental advice I would give that I was sure to make both detailed and impactful, not missing a point… Fifteen, A4 pages is a detailed report that I hoped would make some impact.

For all those who have not yet gathered what the hell I’m yabbering on about.The paper I am referring to was the paper so many families fight so hard to hold but are never given that chance. It was little mans proposed statement of special educational needs… and to be 100% honest it was mostly a load of rubbish!!

I’m not no blonde dizzy bimbo who has a head full of air, I’m also no Einstein … but this statement was ignominious in it’s current form. Yes it could be used to access a “special school” but in terms of providing him with support it was useless, the provisions were largely made up from common sense! and though many teachers need to be told this in way of a statement, there was so much more they should have provided! Did I expect anything less? “No!” yet it would have been great to be surprised, but hay we can dream!

So what was the problem? Did it not describe all little mans needs in part 2, was the description not detailed so as not to leave any doubt to what his needs/difficulties were, did the objectives in part 3 not cover all his current needs, did the provision in part 3 not meet the needs of the objectives and provide provision for every difficulty listed in part 2 or was the provision not specific and quantified leaving no room for doubt at who would provide it, monitor it, how long it would be given (hours per week) and how often he would receive it? Maybe it was the use of wolly fluffy words like: “reguler, access to, opportunities, encourged to” that were my problem?

Funny enough it was all the above!!

Yes, every possible issue was an issue! The appendices was filled with advice from those I mentioned above & funny enough a huge proportion of this advice was actually good. His own senco had however wrote hers in a way that was considered by myself as pure ignorance (she just seemed to make him out like he was a brat) however his behaviour outreach teacher gave a fantastic report and great advice. Reading it back today it’s clear to see that regardless of her only having known little man four or five months, she “got it” she wasn’t a specialist autism teacher but at times I wondered. She was in fact an outreach from the PRU the school tried to place little man in (you know the one that had that who “lock down” style going on) The special schools outreach teacher wrote a reasonably good report which given that they had only observed him the once was pretty good (thing was the school she was based later said they could not meet little mans needs when we tried obtaining an emergency placement) the communications and outreach (ASD “specific” outreach team) are always super and it showed in there report. AWO “yep that’s attendance welfare officer to you and me” wrote half a page that just consisted of his attendance issues and not much else ( no surpises there then) As for the SALT well, I think obtaining a report from 2008 isn’t much use to anyone…. The fact that the school attached his ADOS report (autistic dignostic obsevation schedule) that was carried out by a ASD specialist SALT in 2009 as part of their evidence attached to their advice, the LEA still igonored it and chose to go with the 2008 report. This just shows how sly these foxes are. It’s my understanding the LEA are meant to be following the Cop (code of practice) they should therefore obtain reports and advice given on his most current difficulties, if they want to use a report that was taken from a SALT who visited the school when little man had little issues… was somewhat aloof at the time and just happily faded into the background. Just because it stated he had no SAL problems then I’m inclined to insist they also use reports from 2007 detailing traits that warrant no provision today but did then. These traits are no longer an issue as they have been replaced by others. my point is… Do u think the LEA would have used the report if it indicated high cost provision should be made? The ADOS was clearly backed up by all additional advice including the EP so it was only reasonable it was used instead. If not another SAL assessment should have been ordered. As for the EP report I was surprised… I had heard the horror stories regarding them writing reports that were not very beneficial due to the fact they were employed by those wanting to draw out a budget statement. She gave a pretty good report and picked up on problems such as his sensory sensitivities and literal understanding of language.

Despite the fact most of the reports reflected one another the LEA choose to leave difficulties unlisted, or just including them in part 2 only to not provide for them in part 3. I love how the parental view only gets a small dedicated sections comprising of two or three short sentences… Yet we are the best professionals to ask when it comes to our children, no one knows our child better then it’s parents, no matter how much they think they do!

Well, I’ve spent a little short of two long weeks making sure these “decisions” that were made with little control from me are amended by writing my objections and suggested amendments. I also made my prefernce for a school placement in part 4. Its fair to say that this was the hardest report I’ve ever written… I cried, got frustrated, laughed like a loony, feel asleep, swore out loud and researched a stack of reading of reading material while I typed… It was one emotional process because it is an important one, and having taken this long to get here it had to be right

If statement were for sale, this statement could be brought at our local Tesco store (British supermarket for those more far a shore) you would find the statement on the economy shelf displaying the words Tesco Value range or if sold in sainsbury your looking at the basics section.

Money, it all boils down to money… To them the statement has to be in line with the use of the LEAs efficient resources!
To us that means your screwed because the LEA are tight fisted numb nuts preferring funds to go to the most needy causes like student artist who receive a fat hand out so the LEA can display “pointless ugly art” around the borough.

So here’s my advice to any parent just starting their journey…
… Get ready for the ride of your life. Walking into the world of SEN is like riding the worlds tallest fastest bumpiest never ending rollercoaster… Once your on it’s pretty hard to get off!

5 Responses to “The fight to get it right”

  1. charlotte February 1, 2011 at 2:16 am #

    oh😦 I’m at the beginning of the process and feeling a little fearful now, as if life hasn’t been hard enough over the past 5 years! Why do we have to fight so hard for their rights, it makes me mad!

  2. Jamie January 31, 2011 at 1:03 pm #

    Fighting is what my life is made up of.x

  3. Katie January 30, 2011 at 6:36 am #

    Don’t we just know it Claire. I don’t think I know one parent who has not have the problem of gaining a statement or getting the right wording on the statement.
    Great post

  4. melainey January 29, 2011 at 7:29 pm #

    I think what you have written is beautifully written and I know for sure I couldnt have written it so well..
    I worry about my children, but like you it seems we spent 24/7 with our children, except when the little people are at school, and we dont know our own children, but someone that spends a few hours with them, believe they do..
    My children have moderate learning difficulties, but can I get some guidance or assessments done.. No!! I am told my children are happy within the school environment, and I can help them at home with their reading and writing, okey doke, I can do that, but I left school 30 years ago.. Can I get a parent course, or basic maths and english course.. No!! My children may have dyslexia, but no help, no assistance and no guidance.. Time and time again I come up against a brick wall.. I want my children to be happy in school, but i also want them to have a basic education..

    So my heart goes out to you.. Is it so wrong for us to want our children, treated with respect as a human being, and an education!!
    I apologise for my literacy mistakes, but you get the gist..

    God bless, take care..


  5. fiona2107 January 28, 2011 at 11:18 am #

    Oh Claire… deserve a break my dear!
    But you’re right… sadly does all boil down to money *sigh*.

    Your advice about the Rollercoaster… on!

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