Fighting talk

Well, what interesting week it’s been. After being shared by the National Autistic Society and Mencap, my last blog post went viral! I was overwhelmed by the hundreds of messages of support about our choice to send James to a SEN school. Writing this blog is hugely therapeutic for me, and helps me to process my thoughts- but getting so much positive feedback is a simply amazing feeling. Thank you to everyone that commented.

On a sadder note, its clear from the response that there are huge numbers of parents in the same position as me. Overwhelmingly, there is a sense of confusion about how to go about securing the right support for our children. The process is not transparent; the different LEA departments pass the buck between each other, and parents are pushed from pillar to post. Am I dealing with the SEN department, the Vulnerable Learners’ Service, the Disabled Children’s Team, or all three? Plus, every time I think I’m close to making a breakthrough, there’s another panel of faceless experts who have never met me or my son, seemingly hell-bent on thwarting us.

I had been led to believe that getting James a statement of educational needs was the major hurdle to securing him a place at a special school, and believe me, it hasn’t been an easy ride. Back in September ’13, our initial request for a statutory assessment (i.e. the first step in getting a statement) was turned down, much to my amazement and distress. It then emerged, after a lot of badgering, that the ‘experts’ on the panel hadn’t even looked at James’ diagnosis report, so they didn’t even know he had autism. This is the type of incompetence our taxes are funding, people.

To cut a long story short, we have finally managed to get James a statement, and I mistakenly thought this was his golden ticket to SEN school. Not so. There was- you guessed it- another panel to overcome. Yesterday,  we discovered that they have refused our special school request. In other words, our views and wishes have been ignored completely.

This will not be the end of our fight by any stretch, but I’m bitterly disappointed that there are still more battles to come. More than anything, I feel helpless. Since James was born I have made every decision on his behalf; that’s my job as his mother! But suddenly, this control has been taken out of my hands and James’ fate is being decided by strangers. All I want is to protect him, but for the first time ever I feel like I can’t; like he’s a lamb to the slaughter.

So this morning, I woke at 6am with renewed vigour. I sat down at the computer and started to write a letter to North Somerset Council. For anyone who cares to read it, here it is.

Dear Ms P

I am emailing further to our conversations yesterday to express our extreme unhappiness and  disappointment at the panel’s recent decision rejecting a special school placement for our son James Gaunt.  We fully intend to appeal this decision as we firmly believe that it is not in James’ best interests.

I have explained to professionals, time and time again, that their argument that James needs to be surrounded by typically developing peers, and that he is likely to pick up ‘adverse behaviours’ in a special school, is completely flawed and misses the point entirely.

To clarify this absolutely, I need to state that James’ social, communication and sensory difficulties mean that he does not observe or emulate the behaviours of other children. In a mainstream environment, in fact, the opposite is true. Being surrounded by large groups of children results in intense sensory overstimulation for James, inducing anxiety and ultimately bringing out the worst in him. His reaction is to become withdrawn and difficult to engage; he retreats into himself and carries out ‘stimming’ behaviours which are soothing for him. Ultimately his coping mechanism is to tune out other children and stimuli, meaning that he is less likely to learn appropriate social behaviours and furthermore, his ability to access the curriculum is severely hampered.

His other well-documented reaction to being placed in a mainstream situation is that his behaviour becomes unpredictable and aggressive towards others. His inability to empathise or predict consequences leaves me in no doubt that he presents a safety risk to other children as well as himself. Moreover, it flies in the face of the argument that James will benefit socially from being placed in a mainstream environment. I have already witnessed James’ peers express their unhappiness at having to spend time with him because they are subjected to his regular outbursts; one parent at his nursery has already approached me to tell me that she was removing her child from the nursery as he was ‘frightened’ of James.  It is my firm opinion that James’ social difficulties in a mainstream environment will ultimately lead to him being rejected and bullied by his peers.

James has been very fortunate this academic year in that Springboard have been able to offer him three pre-school sessions per week.  In June of last year, I had to leave my job due to the disastrous effect being placed in a mainstream nursery from 8am-6pm was having on him.  In short, the nursery simply could not cope with him.  The difference in James this academic year – his ability to engage and learn, his behaviour towards others, his overall happiness in these environments –  is plain to see. He is able to participate fully in Springboard sessions because he is at ease and because the staff and the classroom environment cater to his needs. Visual supports which help James communicate, i.e. Makaton and PECS, are utilised by every staff member so there is a consistency in provision that I simply do not believe can be reproduced in a mainstream environment. His behaviour is far easier to manage,  due to a) knowledgeable staff being able to identify both triggers for his violent episodes, and coping strategies for James when they do occur and b) the fact that his outbursts are less likely anyway, because the environment is calmer, with fewer children. Basically, the progress James has made since September can be attributed to the fact he is a specialist learning environment which is right for his needs.

We came to our decision about where we wanted James to be educated on the basis of intensive research of others’ experiences of ASD children in mainstream school. We have spoken with several parents, teachers and governors, who have expressed to us that training for teachers in autism is ‘woeful’ and that essentially these children are a headache for mainstream schools because they lack the skills, experience and resources to cope with them. They fully applauded our decision to request special school for James.

Additionally, I visited the three mainstream schools to which we have considered sending James, and spoken at length with the head teachers and SENCOs. I can report the following feedback:

1) At the first school I was informed that the SENCO was unable to discuss James’ specific needs with me until such time that he had been offered a place at that school;

2) At the second, I was told that children with needs similar to James tend to cope through the reception year, but that this then falls apart in year one when the expectations for formal learning become stricter. The head also started discussing their budget with me, which I found frustrating because school budgets are an area in which I have no input;

3) At the third, I was told in no uncertain terms that the current staff were not adequately experienced to cope with a child like James, and if I chose to send him there it would be a ‘steep learning curve’ for them.

As I am sure you can therefore appreciate, my confidence that any of these schools will be able to meet James’ needs is very low indeed.

Our experience of dealing with the professionals assessing James – most notably educational psychologists – is that from the word go, they have rigidly stuck to an agenda which purports that mainstream school is best for every child. We firmly believe that mainstream school is not the right environment for James, but that our views, the people who know him best, are not being listened to. It seems to us that North Somerset are convinced that James must ‘try’ mainstream school and that special school can only be considered if he flounders and fails. The idea of putting James through this upheaval is devastating for us when we believe all the evidence points to him thriving in a specialist environment.

We intend to challenge this appalling decision every step of the way and ask that this email be forwarded to the chair of the panel, along with a request to disclose the names of those on the panel. As an elected and publicly funded body those on the panel are personally accountable for the decisions they make. Any failure to disclose this information calls into question the impartiality and integrity of the panel members. The decision making process so far has had a worrying lack of transparency.

In addition, we wish to make to make the following requests under the Freedom of Information Act:

1) What percentage of children considered for statutory assessment are refused at the first hearing.

2) What percentage of children whose parents request special schooling for their children have their request accepted.

I believe you are obliged to provide this information within 20 days.

Yours Sincerely,

Holly Gaunt

…lets see what they make of that then x

11 thoughts on “Fighting talk

  1. All I can say is I wish you all the luck in the world with this. We are in the process of getting a statement and have just refused the first draft. Like yourself we on our first attempt refused a statement and at every turn we are hampered with the authority not returning our calls staff changes holidays and a scented. Even the officer we met today said she was covering the role for a few weeks so would not be processing the case to the end. Everything is a battle we need all the support we can get from each other to get through x

  2. I love reading your blog and after reading this latest one. I am surprised and shocked by the hurdles being thrown at you. I hope you get the outcome that James obviously needs. However. I feel that your input should be the most important, whichever school you feel is the best fit for James has to be considered. You know him best. We are always here if you ever need a hug, chat or a cup of tea and a catch up. Keep fighting. He is your little soldier and every sacrifice we make for our little soldiers is to help them become the best he can possibly be. Keep writing as it is better to get it off your chest and all your followers are supporting you. Xx

  3. OMG your letter is brilliant! Where did you learn to write like that?! I’m hoping you won’t mind if I ‘borrow’ bits of it for the future 😀 Seriously, am wishing you lots of luck over the next few months – can’t believe they turned your request down initially but I guess they didn’t know who they were up against 😉 Hope you manage to find the strength to keep that fight up (what I actually mean is I hope they capitulate quickly!) x

  4. Hi Steph, thank you! The trouble is I can only do it in writing- put me in front of someone and my mind goes blank 😉 please do feel free to borrow any bits you’d like!

  5. Holly, I have a 9 year boy with autism and chose to educate at home using the Son-Rise program. Not an easy choice giving up my career, finding volunteers and teaching them. I had experiences of both main & special school (6 wks he lasted) before I pulled him out. Thankfully not all special school is like this one! Now after 5 years of home educating with a combination program tailored to my sons needs Son Rise & Verbal Behavour he finally went to with his worker to school for the first time for 1/2 day. I have walked in your shoes. I battled with the LA for 2.5 yrs for funding for my home program, I also wrote to my local MP who helped alot too. Parent partnership were brilliant too. Just know your code of practice – quote from it. Get an indpendent child psycologist and SI OT to do a report they are worth their weight in gold if you need to go to tribunal. NAS were great too. Now i have a good relationship with my LA ( I know hard to believe) and although it is still a challenge everyday as a family we are much happier. Keep up the good fight they are worth it – Anyway what else would we Autism mums be doing if we werent fighting, going for our nails done, lunching with friends – LOL!!! Thats just inbetween my cooking the GAPS diet for my boy, observing his workers, organising his schedule, seeing all his therapists and looking after my neurotypical 6 yr old girl!!

  6. You know I fully agree with you, Holly. Like James and MANY others William has been refused his statement and we are still waiting to see if those “panel gods” will grant it to us. I’ve also had a chat with the headteacher from a school for children with special needs, and she said it quite clear… this panel is refusing nearly every kid turning up for the first time, she said “they refuse as much as they can, must be a budget thing”.
    Yes we need to start making some noise, I refuse to give up on my child’s future. Even if I have to go to Downing Street. I don’t mind, the people on the panel are playing the hard boys, I’m also good at that.

  7. Hi you might want to contact IPSEA (Independent Parental Special Educational Advice) for advice about your rights and how to challenge the LEA’s decision. Best of luck, you’re doing a great job by your son. Charlie x

  8. Hi Holly, A friend (Kelly-Ann) of yours re-pointed me over here after sharing our story on a sling group we are both on, I commented on your post about sending James to SEN school, briefly telling you about Penguin’s joke of a education until now. I am SO sorry you are having to fight still.
    KEEP fighting that fight! I KNOW it is exhausting, i know it is soul destroying, and i know you will come up against people who, despite their job title, wouldn’t care any less if your sweet boy became school traumatized and never reached his potential. BUT, you KNOW in your heart what is right for your boy!
    I’ve been there Mama, 3 times over.
    My Penguin is 7 and went to 3 school placements in 3 years, the last one being a joke at how neglectful and horrible they were to him. 6 Months ago my panic attacks started, 3 months ago he held his smaller sister up against the door by her throat while he repeatedly punched her and screamed in her face. 4 weeks ago we pulled him out of school and made the agonizing decision to home educate him, at least until he has healed and we can find a happier place.
    Today, OOOO i WISH i could let you see today!!! Today he LAUGHED with his sister, today, i haven’t had a panic attack in 4 weeks. Today he MADE a working radio from snap circuits.
    Today i can honestly say, my family is HEALING.
    Now, i am not saying that Home ed will work for your family, but i WISH (OOOO i WISH) that i had listened to MY heart a long time ago, instead of listening to the people who had either read my son from a paper (or not as the case maybe) or spent very little time with him and called the shots. NO teacher, health professional or LEA’official’ in the WORLD should hold the happiness of a child and their family in front of them like a dangling carrot. Unfortunately, it happens all to often.
    I can only hope they listen to you VERY soon. Feel free to come chat or ask questions over at Autistic Home Schooled Penguin. I am ALWAYS happy to help in anyway.

    Much love and strength to you right now xxxx

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