What doesn’t kill us makes us stronger!

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Warning, the picture of the loo roll indicates the amount of crap mentioned within this one post! Seriously continue reading and you will see!

So, the return to school is upon us, we hit the high Street for uniform, stock the fridge with packed lunch, try to re-establish the already crap bedtime routine and pray the kids will get up in the mornings.

I’ve never had the privilege of looking forward to the kids returning to the land of learning so that I, ‘Mummy’ can over indulge on cbebbies with little H. I always kinda preferred the holidays over the term times, and never acquired that feeling that many do, “I can’t wait for these kids to return to school in September!” When the Little man was in his old school he was normally excluded within a few hours of returning. My daughter has no problems in school, but then again she isn’t expected just to fit in! That’s right, my daughter doesn’t have Aspergers syndrome which means she is welcomed on school trips and is given a part in the Christmas play. I don’t need to wipe her tears and try to find the answers as to why she isn’t allowed to join in with her peers or why she is being taught in isolation as opposed to in the class-room alongside her peers. Its simple… My daughter has not been discriminated against for being “different” she’s one of the lucky one’s!

Little man wasn’t, he sadly went through all the above and more, that was in-till he moved to a school especially for those with autism and aspergers. He only started the independent special school a month prior to the school holidays, yet in that short space of time, things were amazingly different, so much so, I cannot find the appropriate words to describe this situation any better. Normally by this time of the month dread has started to set in. I find myself becoming depressed with what’s to come, a pool of sick lay deep in  my stomach waiting to be stirred! Yes, I’ve done all that rubbish of trying to remain positive, “LOOK AT ME I’M SO POSITIVE, I MAYBE SMILING LIKE A CHESHIRE CAT ON THE OUTSIDE BUT GOD I’M HOWLING ON THE INSIDE”. When you have been crapped on as many times as we have its pretty hard not to lose all hope.

That’s why it’s strange, I haven’t got that feeling of dread, that deep Pit of sickness in the bottom of my stomach. Don’t get me wrong I’m thankful it’s gone yet I don’t know what to replace it with? “God at times I make so little sense, I struggle to understand myself” Surely I replace it with nothing, isn’t this the overall beauty of it, the beauty of no worries? It’s been so long that I’m totally lost when it comes to being free from such dread, seriously, to many I’m I may even sound as though I’m missing the drama! Well, I’m not, I promise you that! 

It’s not just the removal of the dread surrounding the return to school, it’s all of it, the whole stinking lot of it! You see, you spend so long fighting, it becomes a normality! You don’t see light at the end of the tunnel, it takes over your life… the daily calls to collect your child, the letters you write, appeals and representations you make on their behalf. You give it all you have, wishing for an end, a break from the grilling daily fight, then your hard work pays off! Your child gets into that special school, yet when they do… the massive hit of relieve you waited for doesn’t bowl you over quite like you expected it too. Instead you find that you have gone into some kind of shock, you’re unable to settle and adjust because I guess you’re waiting for someone to take it all away.

I know we are not completely home, safe and dry, (can you every be when your child has special educational need, living amongst a system obsessed with saving money regardless of how its achieved). Yes, anything can happen! Yet this is the same with everything in life, meaning taking each day as it comes, enjoying everyday that don’t bring with it a pile of stinking poop.

Friday, last week I got that bit of paper I’ve worked so dam bloody hard to get. Yes, It has been placed in my hands previous, only to be given straight back with the words, “Stick it where the sun don’t shine” attached to both Little man’s proposed and final statements of Special educational needs.

Gosh, I was fast becoming an expert on the use of fluffy wording that gave the LEA a, “Get out of jail free card” 

Excepting such an insult would make the whole deliberating experience to that point, completely and utterly worthless. 

Believe me, having a statement that states nothing other then good old fashioned common sense, was not the kind of statement that would see my child’s special educational needs met. I had constantly heard that it was my duty as a parent to ensure my child’s attendance at school during the height of Little man’s school refusal! So, wasn’t it my duty as his parent to ensure that when he did get there he was happy, cared for, involved, treated respectful, made to fill his contribution to the school along with his individual opinions were valued?

Such question pushed me to where we are today, where I was last Friday!

It had been pretty quite for some time (I hadn’t heard a peep out of the LEA) Little man may have already gain the place we so furiously fought for, yet his statement still remained a sheet of paper not even worthy as bog roll! For this reason the tribunal was still scheduled for the 26th of September.

It remained in the hands of the Gods (well, at times I’m sure they think they are)! Three independent reports, detailing a wealth of information! These were reports so detailed and lengthily that I myself discovered thinks about my child causing me to both cry and smile. The whole tiresome experience of trying to get your child a statement of SEN sends your head spinning in a total mass of emotions.

I opened the email from my solicitor and read how she had received the copy of a proposed amended statement, that was sent to me (Well, I’m still waiting) However not to freight, with the request for a forward the solicitor sent me a copy via email that I so eagerly downloaded and with bated breathe, I opened the attachment! 

There in black and white was every amendment requested, no corners cut, no compromising! Was the LEA all out of compromises? Were they beginning to have enough of the battle, just as I had done all so long ago? Surely they weren’t providing my little man with the ultimate gift available to them… A package of provision to unsure my sons needs where met, like he so greatly deserved, like you or I?

YES, YES, BLOODY YES…….

I looked over in his direction and let out a yelp, followed by a, “WE DID IT BABY!”

He smiles, high five’s me then sits down to continue his game. He was happy for his mum was happy, however he could not fully understand the extent of relieve that the battle being fought was finally over! He had no clue to what might have been!

And do you know what? That was just the way I liked it!

I never want to fight a fight like this again, yet I know that there will be times I will need to fight my sons corner, whether it relates to his educational or social needs, well, as for the remainder of his childhood anyway! (I’m pretty sure he will be somewhat of a great advocate for himself when his older!)

For now I’ll try my hardest to adjust back into a life of normality (what ever that maybe)! I’ll take each day as it comes, enjoying every school performance that both my children take part in. I’ll roll about in the comfort that he now feels that he belongs .

I’ll channel my desire to help others in that same position, into my work as a voluntary tribunal support adviser, I’ll spend more them on my blog indulging my passion to write and throw myself back into my passion for art!

I’ll discover, learn and watch my new interest in photography evolve 

I wont miss a single moment of my toddlers amazing milestones!

I’ll just try my best to be me again

Only a much improved vision

I can officially confirm

“What doesn’t kill us can only make us stronger!”

Related articles

• Feeling a tad proud (aspergersinfo.wordpress.com)
• Taking the Special out of Special Education (ontarioeducation.wordpress.com)
• Rwanda makes gains in all-inclusive education (guardian.co.uk)

Time to find your voice.

This is a post of utter urgency! It’s a plea  for help from the wider community. Does your child have autism, special educational needs or problems in school? Maybe they don’t, but who knows what the future holds!

I was sat at my mothers yesterday checking my emails when I came across something most frightening… A life line for parents of school age children faces the big axe due to funding cuts,’ THE ADVISORY CENTRE FOR EDUCATION’ better known as ACE.

Ace is an invaluable DfE telephone support service who offer advice to parents of school age children on education issues, the main one’s being exclusions, admissions, special educational needs, bullying and discrimination. If your child has ever been exclude like mine, then you have properly used ACE at some point, to advise you on your next steps and whether the exclusion was carried out in away that is considered ‘legal’. The service offers free advice and is normally a parents first port of call. Exclusion letters will often contain the telephone number for ACE, one day I decided to use them. I was offered top notch information that was inline with the education act, I was provide with much needed assistance when I didn’t know where else to turn. The following day I received a free exclusion guide in the post, considering it was 4:00pm when I had called, I considered it an excellent service.

Ace, highlighted some real serious problems for me, including the fact Little man had been illegally excluded twice! If I had never made that call I would have been none the wiser and my guess is the unofficial exclusions would have continued. I rang ACE a significant amount of times over a two year period, with every call I was offered beneficial advice. I feel so strongly about this and was most upset that this service that has offered support to thousands of families for the last 50 years, would no longer be able to operate as they have been informed that funding will stop at the end of the month.

Now you maybe thinking to yourself as you read this, that its of no importance to you, but how would you feel if it was? This is a life line for many and is just one services that parents like me will lose! Unfortunately this isn’t all we have to worry about! Us parents to children with special educational needs as facing a host of possible changes, that in my opinion will only see our children in a more disadvantaged state then ever before. The pending changes thanks to the green paper already pose a huge degree of uncertainty, resulting in possible changes to the law, yet a huge reduction in services to support parents through this worrying time. If that wasn’t bad enough, we face the prospect of losing the right to gain legal aid which many families rely on when challenging schools and local authorities by taking them to the SEN tribunal.

So, lets take a long hard look at the facts. Big sources of parental support face closure due to funding cuts; the new health and social care plan is still very unclear; the removal of legal aid for education cases will be withdrawn at this critical time! Anyone would thing it was some kind of deliberate attempt to reduce the amount of claims being brought against LEAs and schools, not because the child’s needs are being meet… No, simply because parents will no longer be provide with sources of information on their current rights; will lose the right to have access to the legal advice needed or even instruct solicitors! What’s even more terrifying… Parents will lose the lifeline they once had to gain independent medical reports to ensure their child’s needs have been fully documented by those instructed by the local authority!

People need to remember these are children we are discussing! Many will claim that the parent should not relay on such handouts, yet it should be acknowledged that many of these parents are not in a position to engage in paid employment, what with many of these children needing home educating or solely being left out of education due to there being no suitable school placements… I cannot see what a parent is left to do?

I had to apply for legal aid to ensure Little Man’s old mainstream primary school received training in special educational needs. We settled a few days before the hearing as we were given a full apology, the promise of SEN training and a re-write of the schools sen policy. I then had the comfort of knowing I had at least tried to stop the treatment my child received being inflicted on others. I also needed the legal aid service for yet another appeal to the tribunal, for the contents of little mans statement of special educational needs lacked details of current difficulties and provisions to address such difficulties. This time my solicitor applied for funding to gain some essential independent reports, that without… my claim would have little success of winning. Little man received three appointments for three independent assessments that would gain us reports for legal purposes! I wasn’t prepared for some of the things I read in these reports and although I knew my sons difficulties were far grater then any documented by the local authority. I was sadden to see just the extent of how different these were. Although the reports highlighted such valuable information, they would show the disturbing differences between the two. Without such reports it is likely I would have never of known the extent of my child’s difficulties! Although little man can speak I now know certain degrees of his speech and language are considered severely delayed! Other important issues included the possibility of dyslexia and Little mans impaired motor skills. Its extremely possible that my child who will now attend an independent special day school designed for children with an autistic spectrum condition, would have been left to struggle trough a mainstream school, face permanent exclusion or as once suggested… be educated in a pupil referral unit.

Many of us are guilty of saying nothing myself included. We tend to complain once the affects have surfaced and we find ourselves and our child in a troubling situation. Its to late then, the damage is done. There are enough off us to get heard…

I ask everyone of you to consider the above and ask yourself if we are being provide with a service that will better meet our children’s needs or place us within a system that is far worse then the one we currently battle?

If you agree with me and my god, I hope you do! Please get yourself heard. Ace are asking for everyone’s support.

Here’s some suggestions on what you can do.

1. Contact urgently Sarah Teather MP and urge her to review the DfE’s recent decision not to fund ACE from the end of June this year.

2. Contact your networks of colleagues and urge them to write to their MPs.

3. Contact your own political colleagues, in the House of Lords or House of Commons, asking for their support for ACE.

4. Publicise our situation via your websites, asking for support and (if possible) donations to help us carry on our work.

5. Contact ACE to discuss how you can support us.

Please remember that without our help, ACE will lose there funding on the 30th June and will no longer be able to provide us with their expertise.

Other things you can do

You can also respond to the SEN green paper by the end of June

Join an online campaign to stop legal aid cuts, such as TREE HOUSE

Start a petition

Write the your MP

Aspirations Or Clever Financial Alterations! You Decide

We waited and waited and on the 9th, March 2011 we finally got to see  what the Coalition had in store for us in way of the ‘Green Paper’ titled ‘Support and aspiration: A new approach to special educational needs and disability’

Talking as a parent i’m pleased to see that the  proposed education, health and social care plans (EHSCP) that are planed to replace statements of special educational needs will still give parents the same legal protection that a statement brings. The proposed plan would be aimed at 0-25 year olds not just school aged children. The plans will also involve support in the areas of health and social care as well as education, something that has been missing for too long! However I do wonder how this will affect those already with statements especially in terms of funding and the talk of allocated key-workers. Surely the statements will be reviewed in the same way as the EHSCP and so forth! The statements will therefore need to be maintained in-till the child reaches 25 and be amended to include the health and social care aspect.

Another proposal I welcome is the prospect of being given more choice on where our children are educated. I know many will accuse the coalition of  creating barriers to inclusive education in mainstream schools, but I am a firm believer that mainstream is not always the right way. People must remember that all children are different regardless of their special educational needs or disability, Just because society thinks that every child with sen/disability should learn beside their peers, In reality this isn’t easy for some (My son included) I believe that mainstream was seriously affecting his mental health which is the case for many children. I’m also very interested to hear more on the proposal of individualised budgets with greater parental control giving us a voice that allows us to express views on what services and provision such funding should provide. This is proposed to come into action by the year 2014. In till such date I will remain completely open mind. My mother used to tell me, “If something seems to good to be true, then it probably is.” For that reason I dare to get my hopes up.

Some maybe shaking there heads branding me a pessimist! Well, they would be correct, I’m just that!  Sadly it’s true but myself like many others have been made to feel this way when it comes to SEN & education. It’s my opinion that things will never be easy and we are used to battling for every thing our children need. I for one would be a little shocked to discover that I actually had some time on my hands to do other things instead of battling the system by way of phone calls, meetings, emailing, letter writing, campaigning and so on…  I really struggle to get my head around the idea that parents will be able to have an active part in the decision process surrounding their child’s provision & funding. We have to drag the local authority by the arse all the way to the tribunal just to get a little TA time or use of a laptop! So if this does plan out I for one will fill a little strange being suddenly heard and valued (Well, valued maybe pushing it a tad to far!).

Though some of the proposals look good on paper, I’ve been asking myself , “Are these just words being sugar-coated to look sweeter then they really are?” I mean, let’s not forget that the government are in the process of making huge cuts which will affect many of the services that have a role to play within this very paper. How will they be able to provide what is expected of them? Another important question to ask is, “How much are the Coalition planing to save through the implementation of the green paper?”

I’ve also been thinking about the legal side of things. Given the position I’m currently in (Advising parents on their appeal rights on LEAs sen decisions) I see a lot of re-training heading my way if the green paper is fully implemented. The law would need to under go a radical overview, with large areas, especially section 26 and 27 of the Ed act 96,  needing to be rewritten from scratch and the publication of a new code of practice.

But one of the biggest concerns for me is the proposal of a “single, multi-agency assessment” on the same day, rather than separate assessments on separate days. As much as I welcome a speeder assessment process then that of the current statutory assessment (10 week assessment, with the overall process from start to finish taking 26 weeks) but to propose just ‘one single assessment’ with the involvement of all professionals (and possibly even voluntary agencies) is quite honestly barbaric!

The paper has empathised that those children considered to have the most complex needs, will be the children assessed and issued with an education, health and social care plan, therefore how do they propose to assess a child with such complex needs in one single assessment? Children on the autism spectrum will be just one group of  many children who’s needs may be completely missed due to the child’s particular mood, environment, behaviour, anxiety , etc., on the chosen day of the assessment. I know that my own child would not cope with such an assessment, what with all them eyes on him and questions fired at him! What would it even involve? Are we talking about sending an autistic child (or any child for that matter) into a room with a large number of professionals sat with inquisitive prying eyes, clip boards, and a list of questions as long as their arm? If yes, I guess they can expect a shock at the response they get! It just isn’t going to happen… Surely complex means ‘COMPLEX!’ my definition of  such a word would be, “A complex issue or range of problems that take time to fully resolve” The government is forever banging on about children being placed on the sen register at the drop of a hat, well, I can see a situation being created leading to children dropping of it just as quick!  My son can just about cope with an assessment with one or two professional, any more then this rather than being chucked off the register, he will likely be labelled as a child who is dangerous because he will likely hit out as an attempt to escape the highly stressful situation that he has been placed in. Although I agree it’s not ideal him or any other child with sen having to undergo a range of assessments over a course of time, the one day method wont make things any better but a great deal worse!

Let’s be honest would you or I enjoy being sat in a room with a range of people staring at you like some caged animal reporting your every-more?

26 weeks is way too long but one day! Seriously there is no in-between with this government. I mean do the they really have the child’s best interest at heart?

We have to ask ourselves, has the green paper been created with the  ambition of improving the life chances open to children with sen, and  to offer better support for family members, or is it really their ambition to do away with essential services and provisions with little uproar, while at the same time attempting to reduce the number of  children that are placed on the SEN register?

It’s those children considered to have less complex needs that I’m  seriously worried for!  What defines less complex needs? I’ve spoken to many parents hundreds in-fact that have battled in the past  and present with both schools & local authorities to prove just how complex their child’s needs actually are! I know from past experience that schools won’t except this in-till your child is pushed to the point of self-destruction or has become a complete failure at everything due to the stress they have been placed under. Parents of children with Aspergers or high functioning autism find this to be the case a huge proportion of the time. School’s and LEAs say the same thing over and over again, “Your child isn’t an underachiever, therefore warrants no provision to be made for him/her!” Yet there they are whacking their heads against Walls with the frustration of the work load or noise levels in the classroom, they are always running into social difficulties, becoming isolated from their peers and even excluded on a daily/weekly  basis. It’s ludicrous!

By doing away with school action and school action plus I fear these children will suffer a great deal more than they are currently made too already! What with schools being able to commission the services and put the provision in place that these children are said to need, in this current financial climate is like playing with fire. Much more detail and reassurance is needed and although I know that we are once more welcome to give our views on the paper, I just feel given the length of delay in publishing the paper, including some finer details within in it as to make things a little clearer would have been most welcome!

Ministers have to give the public more information in regard to the finer details that make up the aspirations of the green paper. Including the legal aspects, cost (including how much this new system will put back in to the governments pocket in way of savings) and very importantly the statutory duties of those involve

To some parents this paper means nothing! To others it’s the prospect of a better further for their child in both the early years and that of early adult life. Making provision for children aged 0-25 in all areas of education, health and social care is long awaited. Will this be the start of something promising or just another unfulfilled promise by another Government?…. Only time will tell!

Training with a passion

As many of you already know, I’ve been training to become a tribunal support adviser. I’ve never known what  I really wanted to do in life in-till now and this is something I’m sure on. I am seriously hoping to succeed in this chosen path I’ve now taken.

Autism awareness is something I’m passionate about, and as many will already know, either from their own experiences or somebody else’s… autism and the Sendist first tier tribunal seem to go hand in hand with one another here in the UK. I acknowledge that not all children on the autism spectrum have Special educational needs (Sen) but a good chunk of them do and It’s then that many families are faced with problems and a good proportion of the time are faced with the prospect of a fight that eventually ends up in the hands of the tribunal to try and resolve! Ok some are lucky and school’s and LEAs have no problems providing the adequate education for the child! But in my opinion it’s a very small percentage that do.

It’s “funny” how one day everything is rosy in the land of education, but then before you know it, it’s all changed! It could come along and take any parent/career by surprise! It happened to me and it could happen to you!

When I discovered little man had Aspergers I didn’t know the first thing about Sen. The thing is as far as I was aware my child wasn’t on the sen register at school. As many fail to understand… “Having a child with an autism spectrum disorder don’t necessary mean they have special educational needs” I suppose the fact little man refused to even attend school most days, meant the extent of his problems were not seen within his school environment. Well, my point is… I had a great deal to learn back then!

Of course now we are in a completely different situation! Yes, my little man does have problems in school, considerably so that at present his going through the statutory assessment process, is currently part-time schooling and we have a pending DDA tribunal case in the near future. I suddenly had to learn everything from IEPs to exclusion.. all things I’ve never needed to think about before. It’s bloody hard when it goes from being told your child has no issues within school to issues so bad and complex your child now awaits the decision of an emergency “Special school placement” Because their level of need is now so high they cannot cope within the mainstream environment they currently with-side. You hear all this mind-boggling jargon and all you wanna do is SCREAM…”WHAT IN GODS NAME ARE YOU TALKING ABOUT?” School action, school action+, statutory assessments and statements.. “WHAT?” So much time is spent trying to work out what you as the parent needs to be doing to make sure your child is getting the very best education available that you have little time for anything else. I know when I first stepped into the world of autism and special ed I didn’t have a clue! Much of my day was spent running back and forth to and from school only later  spending hours trailing the net for answers or calling autism/education advice lines.

It was from then I armed myself with a hardback copy of the  Sen code and got myself a tool kit. I  also started reading the Education Act (Mainly schedules 26 & 27)  & The Education (Special Educational Needs) (Information) (England) Regulations. With this I began to gradually feel more confident in dealing with little mans special educational needs. The loneliness you feel when your child is diagnosed and when autism and Sen come together is immense. I thank all those that were there advising me along the way, making me strong! If it wasn’t for the likes of .…NAS, Ace, Ipsea and other organisations of this kind I would not have been this strong, I would have likely gone insane! I certainly would not have chosen this route (advising others on their rights within the education system) But that’s just it! By going through it I discovered that I wanted/needed to do more. I cannot thank those that have helped me enough, now this is my way of giving something back.

There was many reasons that made this chosen position feel right for me! The prospect that I will help other parents that like me had no clue where to turn, not knowing when and if they have a right to appeal, deadlines looming while all the time their child is failing or worse still being failed. This was my biggest reason! If my work helps just one family then all this training was worth it!

So… finally here’s the good news!. I passed the distance learning modules (All ten of them) These modules covered a great deal. I swear I’ve read the entire Ed act on Sen, followed by the Cop. I got the email in the middle of last week confirming my place on the two training weekends in Canary Wharf in the Clifford Chance Law offices. The trainers, managers and co-ordinator of the TSS service are fantastic and made us all feel relaxed and very welcome. The first day (Saturday) after a really long training session 10-5:30 p.m. (Ok it’s been a while since I did anything other then be mummy) me and the other trainees were taken out for dinner in this lovely Italian restaurant situated right below one of the tallest buildings, not far from the water. It was a wonderful evening and although I had just met everybody that day I was really comfortable in their company. Sundays training was very practical.. Yes I worried half the night I would mess this one up but it went pretty well.

Well, I’m back for my last bit of training on the last weekend of this Month, and yep I’m looking forward to seeing everybody again and getting stuck in! After that… It’s for real, I’m on my own!! As well as being on the front-line I will also undertake casework, and to be honest I can’t wait!!!

Canary Wharf London