Author Archives: dianemkay

1:1 or TA? Big difference.

I have a memory of going to a Wigan Athletic away game with my dad when I was little. It was at Wimbledon. We’d gone by train and we had to get a bus back to the station after the game,and there were crowds piling onto the bus. The driver shouted ‘hold on, I’ve only got 2 pairs of hands’, and after my dad explained it to me, we thought it was really funny.

What’s not funny, is that special needs schools often think they can share out the one to one support, meant for individual children, and specified in their statements or EHCPs. I wrote about how I wondered if support staff have 2 pairs of hands here: Legal Alien

“Another reason the school isn’t right, is because even when kids have a statement or EHCP with specified 1:1 written into it, the school don’t provide it. They say they don’t provide a named 1:1, but assure me the pupils who need 1:1 get it. I’m no mathematician, but if there are 10 kids in a class, with a teacher and 3 teaching assistants, and a child needs the toilet, that would potentially leave the teacher and 1 TA in the class. And whilst the pupil who needed the toilet has gone, with the 2 staff, another child needs some help from the TA, to turn a page in a book for example, that leaves no TA left to support the other 8 kids. And so on, and so on. There seems only one explanation for what happens if TAs are taken from the classroom to help a child: the other children don’t have support. They wait their turn to get help. They must be sitting waiting, doing nothing, because TAs cannot be in 2 places at the same time. This thing about not having ‘named’ 1:1s (which just means not having 1:1 all the time it’s needed) is bizarre. How can a TA feed 2 children at the same time? Does he/she have 2 pairs of hands? Can he/she help a child drink, at the same time as helping another child cut up his food? Can he/she spoon feed a child at the same time as stopping another one choking on the full sausage he’s put into his mouth and not chewed up properly? Can he/she take a child to the toilet when 2 other children are relying on her/him to feed them? The answer has to be no. But it must be happening, and each child who isn’t given the 1:1 support specified in their legal document is having to compromise like no other child of their own age without the same needs has to. My youngest son doesn’t have to wait to go to the toilet. At lunch time he gets his food and eats it and has time to play outside, just like the other kids. Why is it ok to expect the most vulnerable of our society’s children to wait unnecessarily to have their basic needs met, before they even begin to attempt to learn in a lesson?”
I’m not being flippant now, I’m being deadly serious: A boy fell down a flight of stairs at a Birmingham school and died on Tuesday (see here) There aren’t many details, which in itself is worrying, but the boy was in his wheelchair, was blind, and attended a special school for children with learning disabilities. Without details of what happened, where was his 1:1? Did he have a 1:1? If not why not? A teaching assistant can and, I agree, encourage children to work in small groups as well as individually, but if that TA is also the 1:1 responsible for a child’s safety, that TA doesn’t suddenly grow another pair of hands, eyes, ears, to be able to keep 2 or 3 children safe. Being in a special school doesn’t suddenly mean the environment is automatically safe. It doesn’t. And neither does it mean the staff in special schools are superhuman. They aren’t.

So when decisions are being made about whether a child’s 1:1 can be shared between other children, determine how many pairs of hands he or she has, and if it’s just the one, decide whether LA cuts would justify any of these children being left alone for a split second and getting hurt or worse still killed.

I feel so sad for this boy and his family, and I know my condolences won’t even scratch the surface for them. I can’t imagine how they must be feeling. I hope they get answers though, and that someone is held to account.

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Third person, twice removed

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Where has the first person gone??  Why does it feel as though the person at the centre of SEN and disability has disappeared???

I occasionally feel annoyed if someone refers to my disabled son as ‘he’. Usually though if anyone does say ‘he’ in a conversation or letter/email, it’s because they are already using his name frequently so I know they don’t think of him as a thing and it would be excessive to use his name at every opportunity. There are other times, in conversation or in letters/emails, when Alfie’s name isn’t used. It wouldn’t usually upset me if I knew the person well enough to know it wasn’t intended in an offensive way. I would be upset, if I thought the person didn’t respect my son as a person and I didn’t know that person’s views or values of disabled people and that’s an easy situation to find yourself in. I suppose how it affects me depends a lot on how I’m feeing at the time too, and at the moment I’d be really upset if someone were to call my son ‘him’ or ‘he’.

The one that makes me angry though is when disabled people and children with SEND are referred to as ‘they’, and this subject has been done to death so I’m not going to explain why. If you don’t understand why, and you’re a chair of a governing board, just resign.

At the moment in SEND world I feel like some of ‘them’ are seen as a new phenomenomena*;like they’ve just popped up from somewhere, and no-one knows what to do with them but at other times, they are treated as though they’ve been around for centuries and the way they are treated hasn’t changed at all.

(See how awful it feels reading the last paragraph using they, them etc?)

I read an article tweeted by Jarlath O’Brien about 2 whistleblowers in Australia who’d exposed terrible treatment of disabled youngsters in schools, and the thing that stood out was way one of them had been told after they’d complained “My manager said all disability organisations, there is abuse. And if I can’t handle the abuse, maybe I need to consider my position in the disability industry.”

I could ask, “since when has there been a “disability industry”?” but the last 11 years of having to buy products and equipment for my son at ridiculous prices tells me: at least 11 years!! But not only products and equipment. It seems you can (and often have to) buy pretty much anything relating to SEN & D. My current educational outgoings for my youngest son, who doesn’t have SEND are for uniform, shoes and scented erasers yet Alfie needs a wheelchair, a ramp to get in and out of the house, home adaptations, a rise and fall bath and washbasin, changing bed, hoists, slings, special toilet that cleans the person, pull ups, special bed, orthoses (to keep his feet in correct position), wheelchair adapted vehicle, IT, support workers, [a school with staff who know how to teach and support kids with SEND], a solicitor who can represent my son when these things aren’t provided, and probably others I’ve missed out. All of these things cost money, and this is part of the industry. An industry which pays people a salary, and I’m not for one minute saying this is wrong or unscrupulous. Not at all. I’ve experienced unscrupulous companies and unscrupulous people within companies who could just as easily have been working on a job unrelated to disability, but I’ve experienced MDs of companies who seem to think disabled people should accept a poor standard of service without complaint. In fact I’ve experienced 2 examples of this very recently.

The experiences make me angry, because disabled people rely on these things and when the service is poor, have very few other options or companies they can go to. In other words, they often have no choice, and the company still profits without having to up their game for future sales. It’s like the cost of something is only ever important to the person or company/organisation selling or providing the service. What about the cost to the person on the receiving end? When did that start being irrelevant?  I’m increasingly feeling that LAs are considering themselves to be the victims of the SEND ‘reforms’ too, as if the children are somehow invisible.

Special Needs Jungle blogged recently about the botch up that is the SEND Reforms. And it really says everything it needs to. In particular, I agree with this “We need to put politics and self-interest aside once and for all for the sake of our children.”

Christine Lenehan of Council for Disabled Children also recently shared her views on the reforms, 2 years on. She talks about her early career, and how she’s watched and been part of the journeys of disabled children from long stay hospitals into the community, “However, I believe that journey is not yet complete”

I can’t help feeling, from an organisation funded so heavily by government, that this statement from Christine is absolute b#**#%*$. Whose journey is she talking about? It sounds like she is talking about her own journey. This should not be about her or the organisation, and this is not a journey. This is an absolute nightmare in which families are stuck. They are not meandering along in any meaningful direction. They have been stuck on the latest ‘journey’ for 2 years. What examples are there of any other children other than those with SEND, who don’t start a journey in the autumn term and finish it at the end of a summer term. Then they start a different journey in the next autumn term, and so on. Children with SEND have no beginning and no end because they are on someone else’s journey. Usually a LA officer’s, inexperienced TA’s, or teacher’s, the course of which can change several times, causing a diversion and serious delays for the child whilst the adult gets off the ride.

Ms Lenehan goes on to say. “Looking ahead…….just because the journey of the SEND reforms has been difficult and challenging, don’t forget why we’re are doing it……..we will always be pushing, testing and challenging government….” The article isn’t clear how CDC are doing that. When I push, test and challenge LAs, Ofsted and DfE, I don’t get a knighthood. I get pushed back, tested and challenged.

Finally, (sorry this has been so long) and I think on a more positive note, someone in a Facebook group I’m a member of posted a link which really struck a chord, and put into words very nicely what I believe we should be doing when it comes to research and advocacy and generally educating people about SEND.

“If there’s someone that can speak to a lived experience that you cannot, do not take up that space.” Amani Al-Khatahtbeh

The subject is about diversity in Hollywood, but it can be applied to all situations where we don’t listen to the ones who have the lived experience. We should be giving the first person the floor and be reminded that they are the ones who can provide the most useful feedback: authentic, and undiluted by the journey!

*is it phenomenom or phenomena? Is there a consultant for this (can I afford their fees???)

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Outrage to action

I have been astonished by the reaction to my last couple of blogs: Legal Alien described how my son, Alfie had been prevented from having a part in his Y6 leaving assembly, and about how the secondary school he was meant to be going to had a habit of lining non-mobile pupils up in neat rows at playtime, with no interaction. Recollections was about how Alfie came home from his last day at primary school with a virtually empty leavers book. No memories, no future.

I feel these 2 blogs have really touched a nerve, and I think one of the reasons so many have commented and shared is that it’s something everyone can relate to; not just parents of kids with SEND. Teachers, parents and grandparents of kids without SEND, those who don’t have kids have been equally outraged about a disabled boy who has been ignored. About disabled kids who can’t speak or move, who have been left at playtime doing nothing. It’s easy to picture, and those who have an ounce of kindness would struggle not to feel sad doing so.

The thing is though, if I’d blogged about how I’d been stitched up at tribunal by an Educational Psychologist and a Physiotherapist, or how the LA didn’t follow directions from the judge, or how the LA have just removed the amount of 1:1 my son needs at school from his EHCP, not many people would be interested. Less would be outraged. Not because they don’t care, but because not many people know how the SEND system works, what the jargon means or that there is a ‘system’ in which parents have to jump through hoops to even enter sometimes. Through no fault of their own, they think children and young people with SEND go to a school of their parents’ choice, get the support they need, and it’s that simple. But it’s not!

What I hate about the SEND Minefield by Debs Asplands beautifully describes the issues parents of children with SEND face, and if you add these stresses on to the feelings parents have when their child is completely ignored at the end of their primary school years, the reality is pretty grim.

Local Authorities and schools have a legal duty to make sure what a child needs in order to learn and grow into a valued member of society is provided, but too often this doesn’t happen and some of the reasons are too complicated to explain. They are often too complicated for parents to challenge, and when a cash strapped LA pays for very expensive solicitors and barristers to make sure a parent has no chance of successfully challenging the injustice, the child suffers. The family suffers. Parents break up, brothers and sisters feel neglected, debts pile up to pay for legal help, mental health is affected, and the list goes on.  (Katherine Runswick-Cole talks here about the horrendous experiences parents have faced at tribunals.)

I’m currently in a position where I can access legal help to challenge injustice for Alfie’s education. I’ve not always been able to, and the last 2 tribunals broke us as a family. It’s so unfair that local authorities use tax payers money to fund (often disreputable solicitors and barristers just to ‘win’ against parents, with no regard for the child at the centre, and I believe LAs should also fund (using the same tax payers money) solicitors or barristers instructed by parents, to represent parents, to level the playing field.

 

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I know this idea sounds unrealistic, and it is, because tribunals shouldn’t be like criminal courts, where barristers and judges talk about cross examination and examination in chief. [And a lot of the time, none of the tribunal panel or legal representatives will have even met the child being dissected!] There shouldn’t be solicitors and barristers in the tribunal room, but LAs will fight to the end and often the 11th hour just to deny the child his or her right to an education that will create opportunities for them to reach their potential. Not even exceed it. Just to not be forgotten and ignored.

I think everyone should be asking local authorities why they shell out so much on solicitors and barristers instead of investing the money in education, and if my petition reaches 10,000 signatures before December, the government will hopefully respond to my idea of making LAs fund the parents’ legal fees as well. Let’s face it, no one is going to agree to making LAs spend even more money they allegedly don’t have, but what the petition could do, is make people talk about the failings our children with SEND are having to deal with and hopefully do something about it instead of constantly sticking their heads in the sand, and waiting for things to bed in.

Please sign, and ask others to sign as well. You don’t have to be a parent of a child with SEND. Anyone with an ounce of kindness can sign.

Make Local Authorities fund legal representation for kids with special educational needs and disabilities to get a decent education.

Thank you.

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Recollections

Well, yesterday was my son’s last day at primary school, and all the Y6 kids got a book in their leavers assembly to record their memories in.  

My son can’t read or write, so depends on his TA for everything.  

The kids all signed the book which was nice, and the family support workers Rachel and Kate wrote a lovely message, but apart from that, the rest of the book speaks volumes.  It shows that my son has no friends.  It also shows that the staff have made no effort to help him make friends.  He has left school with not one phone number or email address.  Not one.  

His teachers, teaching assistants, headteacher, office staff, dinner ladies haven’t written a message. I think this shows what they think of Alfie, but more importantly, it shows that no one has thought, or made the effort to take Alfie round school to get his book signed, which is most upsetting.  He can’t do this by himself.  He can’t do much by himself, and he’s completely dependent on someone else to create opportunities for him.  He’s been denied the opportunity to keep in touch with the kids from primary school, and I know there are some kids there who absolutely loved Alfie, and showed kindness and genuine respect for him.  I’m not going to try to understand why no-one thought to do this.  It’s completely unacceptable, but it goes on, clearly.  

Here are the highlights from my son’s leavers book. 


The most upsetting thing about that book, is this picture and caption on the first page.  Oh the double-whammy-negative-irony.  For kids like Alfie, it’s too easy for them to stand alone and often it’s not because it’s easy for them, it’s easier for the adults who should be doing everything to create opportunities.  I’d really love for my son to be part of a crowd, and decide for himself if he wants to just go with the flow, or be a pain in the arse like his mum, but I doubt he’ll ever be able to make that choice.  
 

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Legal Alien

Dear Ofsted

It’s almost the end of my son’s primary phase of education. He has no school to go to in September because he is disabled by the people who are meant to help him learn.

[The school’s mentioned in this post are not in Wigan]

The school we thought was the right one, and where my son had a place, has proved not to be the right school. At break times, the pupils in wheelchairs are lined up on the playground like cars on a forecourt, and left, very neatly in a row doing nothing and interacting with no-one. I saw this with my own eyes, and I also saw staff from a feeder primary leave 3 of their wheelchair dependent pupils in a lovely semicircle, unable to mobilise, on the playground, while they went inside for a brew. This was part of their transition to secondary school.

Another reason the school isn’t right, is because even when kids have a statement or EHCP with specified 1:1 written into it, the school don’t provide it. They say they don’t provide a named 1:1, but assure me the pupils who need 1:1 get it. I’m no mathematician, but if there are 10 kids in a class, with a teacher and 3 teaching assistants, and a child needs the toilet, that would potentially leave the teacher and 1 TA in the class. And whilst the pupil who needed the toilet has gone, with the 2 staff, another child needs some help from the TA, to turn a page in a book for example, that leaves no TA left to support the other 8 kids. And so on, and so on. There seems only one explanation for what happens if TAs are taken from the classroom to help a child: the other children don’t have support. They wait their turn to get help. They must be sitting waiting, doing nothing, because TAs cannot be in 2 places at the same time. This thing about not having ‘named’ 1:1s (which just means not having 1:1 all the time it’s needed) is bizarre. How can a TA feed 2 children at the same time? Does he/she have 2 pairs of hands? Can he/she help a child drink, at the same time as helping another child cut up his food? Can he/she spoon feed a child at the same time as stopping another one choking on the full sausage he’s put into his mouth and not chewed up properly? Can he/she take a child to the toilet when 2 other children are relying on her/him to feed them? The answer has to be no. But it must be happening, and each child who isn’t given the 1:1 support specified in their legal document is having to compromise like no other child of their own age without the same needs has to. My youngest son doesn’t have to wait to go to the toilet. At lunch time he gets his food and eats it and has time to play outside, just like the other kids. Why is it ok to expect the most vulnerable of our society’s children to wait unnecessarily to have their basic needs met, before they even begin to attempt to learn in a lesson?

At this right school, that’s now the wrong school, parents aren’t involved in setting targets in the IEP. The targets are set, and sent to parents. They can be reviewed at the annual review, the SENCO and head of year told me.

At this wrong school, after 4 transition sessions of 2 hours each, and no-one attempting to find out the practicalities of how my son eats and goes to the toilet (because the transition sessions were between 10am and 12pm, which didn’t coincide with lunchtime, or toilet time) the SENCO seemed surprised when we raised concerns about the lack of readiness for starting in September.

This isn’t a mainstream school. It’s a special needs school, rated outstanding by Ofsted. A school in which staff stand around chatting, eating bananas on the playground, while the Ford Fiestas are lined up quietly and neatly on the forecourt. Obviously they didn’t think anything was wrong, and presumably Ofsted would have seen that when they inspected, and they didn’t think it was wrong either. It kind of undermines the inspection system in my view. Well, actually no it doesn’t. The inspection system is what it is and doesn’t need this to undermine it. The people inspecting clearly think it’s ok for non mobile, totally dependent kids to be lined up like that. No one trying to engage these kids to play a game, not talking, not singing, not pushing them around the playground to see what the other kids are up to and joining in. So as long as you have people rating a school outstanding, based on the things I saw in 2 visits, it has to be happening all over, and not just in this school. It must be, and this is why I’m not submitting a complaint to you. You cannot change the SEND landscape by inspecting schools in the way you do. Your inspectors need training. You need training from parents who are experiencing these unacceptable, disgraceful practices and you need to understand why it isn’t ok to not involve parents in setting targets, and why it’s not ok to abandon profoundly physically and learning disabled children in a playground unattended and uncared about.

Yesterday, my son was in his end of Y6 performance. ‘Pirates of the curry bean’. For months he’s been watching different versions on YouTube, reciting lines in the middle of the night when he wakes up all excited. But he didn’t have a part, because they (the school) couldn’t get him on the stage (in his wheelchair). When we bought our tickets, the TA was shocked and ‘worried we’d be disappointed’. She wasn’t wrong. I was utterly heartbroken and livid at her, at the teacher, at the headteacher. My son never disappoints me, ever. My son said ‘welcome to the show’ at the beginning, and ‘thanks for coming’ at the end. He didn’t get a mention and an applause at the end, when each of the actors were called out for their part in the production. My husband told me this, because I had to leave the room shortly after 2 of the children lifted a wheelbarrow on to the stage and playfully pushed each other around on stage in it, talking about cockles and mussels. My immediate thought when I saw this (which was funny and the children were amazing!) was how the teachers who’d organised the production found it more important to have the wheelbarrow scene in than have my son on stage. I also remembered a photo I’d seen some time ago, of Tanni Grey-Thompson sat in a wheelchair somewhere in London, campaigning for better wheelchair services.

http://www.bbc.co.uk/news/uk-33595627

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http://www.rightwheelchair.org.uk

 

My husband attempted to explain why what happened last night was unacceptable, and the teacher told him she hadn’t thought of getting a ramp so he could access the stage. I don’t need to say anything more on that. Do I? I really hope you can understand the severity of this without me spelling it out to you.

Again, I’m not going to make a formal complaint.

I’m not making formal complaints about these two schools because it will achieve nothing. Selfishly, I’ll breathe a sigh of relief tomorrow, when my son gets home at 3.30. It is selfish, because I know other children will receive the same treatment in the future, but I really don’t believe I can make any difference whatsoever. The only thing it would do is make me ill.
I think the word I want is ‘systemic’. I know many parents contact you with similar and often worse stories of discrimination against disabled children in our schools, and I suppose what I’m asking is that you do something about it. My son will be at home with me in September, and I know he’ll be safe and happy, but he should be at school, making friends, experiencing the world and I will never come to terms with the reason he isn’t. There are many children who can’t stay at home because the school they thought was suitable isn’t. They have to attend schools which have such low expectations and aspirations for their futures, and it’s frightening.

The origin of the word ‘alien’ is:

Middle English: via Old French from Latin alienus ‘belonging to another’, from alius ‘other’.

http://www.oxforddictionaries.com/definition/english/alien

My legal alien, an 11 year old boy who has every right to be at school and doing what he wants to do, but can’t because he will always be seen as no-one’s responsibility. An ‘other’.

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When will Ofsted see that children like my son are being denied so much and having their futures taken from them?

Yours sincerely

Diane Kay

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Why did I dob Baker Small to the Solicitors Regulation Authority?

3 things have happened in the space of 7 days that have made me livid, so I had no option but to complain about BS:

1) Last week, a man came to my house to demo a wheelchair adapted vehicle for my son. He was from a very successful firm who specialise in vehicle conversions for physically disabled people (my son is a wheelchair user). Long story short I had to report him to the police because he accidentally showed what I thought was a naked disabled girl on his computer instead of a rear telescopic ramp system. The police have assured me it wasn’t a disabled girl, but the beginning of a porn film involving an ‘oriental’ young woman. The police are confident his taste in porn is adults only, and I’m still waiting for an apology from the company, and details of how the guy has been disciplined. Apparently he needs to watch porn because his job takes him away from home a lot. My heart bleeds.

I’d like the man to be sacked. Bit harsh you might think, but if he needs porn to get through his days, he’s not the kind of person I trust to visit potentially vulnerable people. Also, he compromised me and my family. The lack of any apology from the company suggests they are hoping I will just forget about it, but why should I? The way I felt, thinking he had photos of children (disabled and naked) just made me sick, and it made me want to go and collect both my children from school and lock ourselves away for the rest of our lives. When I found out it was an adult, those feelings didn’t leave me, because it was a stark moment of reality – my son and children like him are not safe.

2) When I saw Baker Small’s first couple of tweets I was livid. A couple of years ago I had a brief Twitter convo with him and he was comparing a child’s provision to cars. Enough said. Probably a Jeremy Clarkson fan. Anyway, admittedly I was a bit childish in one of my tweets to him on Saturday night, when I asked him if he was still breastfed, but I was gobsmacked at how little he seemed to care about the impact his comments were having, like a young child who can only but speak the truth because they have no filter. And although I knew to be wary of him, it clicked on Saturday night that he thought he was completely untouchable. Just like LA staff I have dealt with do. Somehow they know they can do or say whatever they want, and there is no comeback because the only option for parents is to go to the tribunal. The maladministration dished out daily by LAs goes unchallenged because a body such as the LGO (Local Government Ombudsman) won’t touch it because there is another means of action i.e the tribunal, and the tribunal are not interested in the shenanigans of LAs, just the decision. They’ve got us all ways, so when BS started shooting his mouth off, I had to report him. Just like the fella who thinks its ok to expose me and my family to his ‘medicinal’ porn. I’ve had enough.

3) This happened today, but has been on my mind for the last couple of weeks: 5 parents and I (all from Wigan) met with the Chief Executive, Director of Childrens Services, and two Assistant Directors from Social care and Education, at the Town Hall. Almost 2 years to the day, after we appeared on BBC Regional news telling our stories of how our disabled children had been abused, mistreated & neglected in school. The Chief Executive was given the right to reply, and she sat in the BBC studio and told viewers we were wrong, that judges had cleared the council of any fault. Utter BS. So, 2 years on, we met with them to present this report:

No Candour, No trust, No closure, No learning.

I think the findings are scathing. I think we have been treated like dirt, and when the Chief Executive was asked today if she’d go on TV and publicly apologise to us, she declined. You see it’s still about the reputation of the council. It doesn’t matter that 6 families were portrayed as troublemakers and difficult just because Wigan Council didn’t know their arses from their elbows, just as long as the public don’t know the truth.

Well this is the truth:

• SEND law is not adhered to in LAs

• No one is ever accountable

• Parents who challenge are labelled ‘difficult’ or ‘never satisfied’

• LA staff show their dislike of parents

• It’s personal

• The child ‘disappears’

• The gloves come off

• It’s about ‘winning’ the tribunal

• LAs use tax-payers money to fund external solicitors and barristers (why the hell can’t their in house solicitors do it? More to the point why can’t a LA officer present the case at tribunal?)

• The tribunal becomes focussed on legal rules and legal point scoring so god help an unrepresented parent. Provision for the child is less important.

• The child loses out

• The family breaks down

• Years of children’s lives are being lost whilst this goes on; time they’ll never get back.

• What could the money LAs use to fund legal representation be better spent on? It’s not rocket science.

I guess that’s it. I’ve had enough of being treated like an unreasonable consumer with faulty goods that no one wants. I’ve had enough of people making a shed load of money at the expense of some little kid who deserves and is entitled to the same opportunities as his/her peers. I’ve had enough of the way parents’ battles have become the norm, something to be expected, par for the course. Parents of children with no SEND do not have to fight for basic provision to ensure their child is in a position ready to learn, but our kids have to feel grateful for someone to take them to the toilet, or let them go on a school trip. Enough’s enough.

I hope Baker Small can tell some more truths now, about the real conversations he and LAs are having about parents, and how they prepare for their ‘win at all costs’ tribunal. It’s time for change and I’m sad that it’s taken the stupidity of a solicitor to get the issues faced by parents of children with SEND being discussed seriously. But they are being talked about now so let’s hope we get some action!

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Ramblings.

I read lots of blogs and articles written by parents of disabled children (whose ages are wide ranging); some I can relate to but some I really can’t. But this post isn’t about why I like certain blogs. It’s about how I feel as an individual. Who has a disabled son. And how I never seem to live up to the bloggers who feel joy and gratitude and hope for the lives they live, even when they’ve been dealt a card which more often than not turns a family’s life upside down.
I doubt I’ll be able to explain myself very well but I need to try.   

The main reason I write these blog posts is because I need an outlet. I also want others in a similar boat to me to know they are not on their own. I also want to tell the outlet some of what really happens in SEND World. I don’t really decide to write a nice story with a beginning, middle and happy ending. If I were writing about my family’s love of going into town so one child could go in every lift, the other could fleece me dry, and I get to do, well, naff all except push the wheelchair and prevent catastrophes happening, I could probably put some words in about how much I love my kids and how I’d move heaven and earth for them and how fantastic they are in spite of the dysfunctional family we have and that’d be fine. But it’s not what I’m writing about. I’m writing about the realities of SEND. And I can’t see how I can write about joy and love in the same post about SEND. Either I’m being very harsh and envious about parents who seem to be floating around blogland with picnics and smiles, or the truth is they are actually not really that affected by or don’t really get involved with the harsh reality of securing the provision their kids are entitled to by law.   

Is that it then?? Parents of kids with SEND who don’t get involved with LA services are happy and joyous. Parents who do, are miserable sods, in a continual cycle of firefighting? I doubt it.

I doubt it’s that simple, (and there’s another group who don’t need to rely on LAs but I’m not including them) but assuming it is, how do the latter group of parents of children with SEND ever hope to be able to live a ‘normal’ life?
You can eventually achieve your own ‘normal’, but when there are endless fights and battles, and seemingly no change, it’s hard to think you are ever going to be the level of ‘normal’ you know and accept.  In striving for as normal a life as possible, do the parents who I see as happy and joyous just say  ‘Enough’s enough.  Our lives ar too short. We need to quit fighting for what our child is entitled to, just for the sake of our sanity and happiness.’ ?  Seems possible there could be a point where parents ‘give up’ and get off the ride, and if those parents could just stay on for a little bit longer, we’d have the years of experience, plus the energy and strength of ‘new’ to the journey parents.  

That’s all I can say on the subject.  There we have it. It’s not my fault my inner Maria von Trapp is being stifled.  Amen. And writing this makes me realise why I get so cheesed off when I see ‘inspirational quotes’ being tweeted in relation to SEND reforms etc..  

Twitter: 


@angryparent
: Rec’d son’s EHCP today. It’s in Cantonese. 

@happysmileyperson: that’s great!

@angryparent: ffs why is it great. We don’t speak Cantonese!

@happysmileyperson: 🌺💩🌹“Positive anything is better than negative nothing” (Elbert Hubbard)

@angryparent: do you work for a large charity by any chance??!!!

@happysmileyperson: peace and love 💜💜

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I think we’ve found the right school. I’m gutted.

We think we’ve found the right school for our son, who is disabled and has special educational needs (SEN), and it goes against everything I believe in, because it’s a school for kids with SEND. (The head isn’t keen on using the ‘Special School’ title, and I like that, because I never describe my son as having special needs.)  

We’ve visited several schools now,(mainstream and special) and what’s become apparent is that the ‘special schools’ are expecting increasing numbers of students in the next couple of years. There could be different reasons for that – fantastic school with outstanding Ofsted? Increased birth rate? Huge housing development being built next door? No. I believe the main reason is that the removal of the ‘bias towards inclusion’ that Sarah Tether talked about a few years ago has taken root. The seed was planted, and the government tried to dig it up soon after but it was too late. There’s the other stuff like exam results, which might deter mainstream schools from wanting to take on pupils with SEND, but I think it’s far easier now for schools to get away with just not wanting to take kids like my son, but to package it in a way that makes it sound like they would do everything possible but the cuts etc, etc, etc.  

I go on Twitter and Facebook, and I get a good feel of the good, bad and ugly in the SEND world.  And whilst I’m an activist, with what I believe to be sound values and beliefs, I hate myself for deciding (jointly with my husband) that no amount of ‘fighting’ could get my son a good education at a mainstream secondary school. I just know that to find a mainstream secondary school willing to do the right thing for my son is like finding a needle in a haystack. (If any Headteachers from a mainstream secondary school within 15 mile radius of Standish could offer a truly inclusive school place to my son, please do get in touch!) 

I don’t want you to think I’m anti ‘special schools’. I’m not. I just believe all schools should just be schools, which can meet the needs of all its students. So when I tell people we’ve chosen a special school for our son, it’s not that I’ve suddenly changed my view and I’ve now ‘seen the light’, or that I’m no longer in denial about the level of my sons’ needs, or that I’ve actually started listening to people who’ve been right all along or that I now realise that mainstream schools just can’t meet my sons’ needs. It’s none of those. It is not my son’s fault. It’s simple: LAs are denying children and YP the opportunity to go to school in their community, with their peers from their community, because the provision is not there. There is no choice. And that is wrong. It’s probably unlawful.   

The school we think is the one is a lovely place. It’s modern, lots of space, accessible for wheelchair users, has great toilet/changing facilities. The kids are really keen on having a voice, being part of decision making, and a large number of them can speak. Even saying this makes me so angry though, because many schools don’t have the basics required for disabled people – wheelchair accessible and toilet/changing facilities and in a way I feel as though I’m ‘settling’ for something just because it has what others choose not to have. *

I think we’re kidding ourselves if we believe that schools being afraid of lower results/poor Ofsted scores is the main cause of hands being tied. I don’t think so. If all schools were proactive in their equality duties, it would send a clear message to all the bodies who are perceived to be the barriers to inclusion, that actually, schools want to admit kids like my son, and do it well, and to treat him like he belongs there, and ultimately meet their duties of equality, but they don’t. Some do, but too many don’t.  

Stop making excuses. Kids like my son are just not welcomed by far too many schools, and I can’t put him in a place like that. 

I need to be positive about this and I think my son will love the school. 

*I don’t want you to think I mean settling for an inferior option.  Not at all.  There are just no other options!!

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Creation of monsters II

Penultimate day of Easter holidays for kids today so we went into town to check all the lifts were working.  Debenhams. H&M. M&S. BHS.  All fine but Debenhams takes the rosette for its ser-static shocks.  Bloody hell! 

That should have been it, but I sensed the lift craving hadn’t been satisfied, and knowing the youngest only wanted to go to Waterstones (which has no lift), we had to risk going outside, down to Primark, just to squeeze in another.  Fantastic lift!  Can fit 13 persons in.  Wow.  

Killing time, in the Boys 1-8yrs section (?) a little lad (about 2-3 yrs old) ran round a rack of Minions underpants, swerved, and almost folded in half backwards when he realised he’d nearly run into Alfie.  His Nan looked for him, saying “where’ve you gone?” and the little boy said something which I couldn’t make out and finished off with the word “monster” whilst backing into the vests as we went past.  

I don’t know if Nan had heard him.  I think she did but who knows.  

I’ve always said that children should be taught about disability as soon as they start school, and this is why.   But how can we teach kids from early on that disabled people are not to be feared (as a minimum!!) when increasingly disabled children are being forced to attend special schools because mainstream schools don’t want them?  How can we teach children about ‘others’ who they never encounter in real life, face to face?  We’ll probably have more success teaching them about the critically endangered Amur Leopard.  And it’s probably less scary.

Creation of Monsters is here. Slightly different, but just the same really. 

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Waldorf Salad Please

Since we won’t consider a school in Wigan for either of our boys, due to the failure to deal with, and subsequent attempted cover up of the safeguarding issues relating to our disabled son in a Wigan school, we are left to find a suitable school ourselves.

The shambolic EHC needs assessment that hasn’t even finished, yet has produced a finalised plan, provides no useful information as to a suitable school. Wigan Council have provided me with a long list of all secondary schools in neighbouring LAs, and I assume they think it’s reasonable for me to just go down the list, and visit every single one until I find one that might be suitable.

I’ve made a few enquiries and visited some schools. None really stand out as ‘The One’ after just the initial visit, but a couple need a second visit. The thing that has stood out though, is how difficult it has been to even get to visit some schools, and it makes me wonder if it would be this difficult to arrange visits for children without SEND.

Examples of phone calls to arrange visits:

1)

Me: Hi, I was wondering if I could arrange to come and visit the school to look around please?
Sch:We’ve just had our open days/evenings.
Me: I know, sorry, I couldn’t make them, and I’d like to meet the head as my son has SEND
Sch: We are having another open day on xyz.
Me: Sorry, I’m working that day and can’t get time off
Sch: Ok I’ll have to ring you back………………
Sch: I’ve spoken to the head and that’s the only day he can do.
Me: But I can’t make it as I can’t get time off work.
Sch: Well I’m sorry but that’s the only day.

2)

Me: Hi, I was wondering if I could arrange to come and visit the school to look around please?
Sch: what year is your child in?
Me: Y6, but I’m looking for secondary Y7
Sch: But all the places have just been allocated
Me: I know, but we didn’t go through the normal allocations system.
Sch: Why not?
Me: Because our son has SEND and we don’t know which school we want him to go to.
Sch: But you can’t just turn up on the first day of term in September if he hasn’t got a place here.
Me: I know that. We don’t even know if we want our son to come to this school yet. We just want to meet the head and discuss our sons needs and have a look around.
Sch: You can’t see the head. We’ve allocated the places now, you’ll have to speak to someone at the council. What year is he in, Y6?
Me: But I’d like to meet with the head. Yes, Y6.
Sch: well, I’m not sure what to do, I suppose the deputy could ring you. So he’s in Y6.
Me: We’d like to meet the Head. Is there an issue with meeting with the head?
Sch: What’s your number and I’ll get someone to ring you back? So, Y6.

3)

Me: Hi, I was wondering if I could arrange to come and visit the school to look around please?
Sch: Do you live in xyz?
Me: No, we live in another LA.
Sch: Have your LA agreed to fund a place here?
Me: No, we don’t even know if we want a place here, as we want to look around it first to see if it would be suitable. Then we would discuss with our LA and take it from there.
Sch:what’s your son’s name and date of birth?…..Oh, so it would be a secondary place? What school is he at now?
Me: xxxxx primary
Sch:Where’s that?
Me:xxxxx
Sch: where’s that?
Me: it’s in Lancashire, but we don’t live in Lancashire, we are in a different LA.
Schl: just hold the line…………..
Schl: you do know that our Y7 is full don’t you?
Me: No (((why the #$*@ would I !! )))
Sch: You can still look around but I wouldn’t want you to be disappointed because we are full.

 
It’s demoralising, but we’ll just keep looking.  In the meantime….

 

I’ll just have a Waldorf Salad

 

 

 

 

 

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