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Dyslexia, the Education System and Life in general

A Long Battle – The Whole Story

Dyslexia and the Education System

I have been through a huge battle with the education system, to get my severely dyslexic daughter the right support in her education. This has been a massive learning curve, and has left me at breaking point on several occasions.

I really hope that by sharing our story we can inspire, inform and empower others in their journeys.

Junior School

Looking back, I always remember Josie struggling with spelling tests. She would get so upset when we tried to learn the words at home. Unlike her older brothers, she just couldn’t seem to learn them. At the time, I thought it was more to do with confidence and her believing that she couldn’t learn them, and she had put up a block.

I felt like a useless mother as I couldn’t even teach her basic spellings, that I believed we could easily make memorable for her to learn.  Her self esteem dropped and she totally believed she was stupid; this has affected all aspects of her education and also her social life, in and out of school.

I tried to boost her confidence, as I knew she was a clever child. She is good at seeing the bigger picture in life and can out argue me in a debate. She has always been very observant, not much gets past her, and her long term memory is above average. At the same time she struggles with her working memory, and she sometimes struggles with even a short list of instructions she has to follow.

Primary school picked up on a few issues and put her on School Action Plus (SA+) at the beginning of Year 1. This means that she received an Individual Education Plan (IEP), this is a sheet of paper with individual targets ie. who will practice rhyming words with her, and things to practice at home. The IEP should be reviewed termly with parents.

At around this time I started college to train as a Teaching Assistant. I volunteered at Josie’s school for a couple of mornings a week. I really enjoyed helping the children and spotting which ones needed extra support. But as I battled with Josie at home I felt so useless. How can I be any use to someone else’s child if I can’t help my own? This totally knocked my confidence in myself and actually put me off approaching the school for advice about Josie as I felt like I was a failure as a parent. I felt so alone, ashamed and dreaded parents evenings. I believed that I was the worst parent on earth for not being able to help my daughter. This then totally stopped any idea I had of fulfilling my dream to become a Teaching Assistant.

In Year 3 the school called in the local Speech and Language Therapist (SaLT). The tests showed up areas of weakness and made suggestions of various things for the school to practice with her.

In Year 5 I had a meeting with the Special Educational Needs Coordinator (SENCo) at the school. She said that the school would be taking away the support that Josie receives in class, so she learns to become more independent ready for secondary school. I asked if she could be dyslexic, as she is still reversing letters b,d,p,q and various numbers. I was told that she is being given all the help she needs, and that she is being taught the right way for her.

Year 6 involved another SaLT Assessment, and this time when I asked if she could be dyslexic, I was told that if she was tested, it would probably show up that she is. But I would have to think carefully about having her tested as the ‘Dyslexic Label’ can sometimes give children an excuse to stop trying.  I was told that as most of this year’s school budget has already been allocated, it would be better if I waited until she starts secondary school…

Discovering Dyslexia

As soon as Josie started Secondary School, I contacted the Special Educational Needs Coordinator (SENCo) at school. I explained my worries and asked if she could be tested for Dyslexia.

In October 2012 a Dyslexia Screening (a short 15 minute test) was carried out at school, which showed up ‘traits of dyslexia’. All that it recommended was that she should be assessed again before sitting her GCSEs, to see if extra time would be allowed for exams. I couldn’t see how extra time in her exams would help when I felt it was so obvious that she needed a lot more support now.

The school put extra classes in place, so for an hour a day (four days a week) my Josie attended a Fresh Start Reading and Writing group during school time, and also small maths groups. These were to help her catch up, but meant she would miss out on other vital lessons. I needed to make sure she was getting the right help and to find out about dyslexia.

I searched the internet, which turned up endless websites (look at my ‘Links’ page, for the ones I found most useful). I couldn’t find anything local and really felt out of my depth. I telephoned the British Dyslexia Association helpline about the same time, with no idea what questions to ask, I knew nothing, but knew I needed help. From what I can remember it was suggested that I look on the BDA website to find my Local Dyslexia Association. My closet one was 15 miles away in Croydon, so I decided not to go.

I continued my web search finding Dyslexia Action, Helen Arknell, etc and felt increasingly more lost. I phoned Dyslexia Action, and because I didn’t know what I needed to ask, I just found out about tuition, which was out of my financial reach, so I kept on searching.

I have started my blog now because I felt so lost at this point.  How could someone give me answers when I didn’t understand the questions I needed to ask?

One day I accidentally spotted the British Dyslexia Association ‘Empowering Parents’ free workshop, in March 2013. I booked a place and then nervously went along and listened to speakers talk about Special Educational Needs, Code of Practice, Statements, EHCPs, MindMaps, and endless other things that I had never heard before. But the main thing I realised is that to get the right help, I need to understand my daughter’s strengths and weaknesses, which I would get in a Full Dyslexia Assessment. Also I discovered that I would have to pay for this myself (between £300 – £600). It was mentioned that my nearest place to contact would be Dyslexia Action (in Egham).  I also found out that there was a meeting at Croydon Dyslexia Association a couple of days later, and that I would find that of interest, and it isn’t a million miles from where I live.

I went along to the Croydon meeting armed with Josie’s Screening Test results and samples of her work. I met some lovely people, and was given the name of Sarah Beard (at Dittas) as she carries out Dyslexia Assessments. I was told that she would be the best person to talk to.

I telephoned Sarah, and said I think I need a Full Dyslexia Assessment carried out, as I was concerned that my daughter might be dyslexic. I explained that I want to understand her strengths and weaknesses, so myself and her school can understand how best to help her. After I completed a questionnaire, I sent more samples of Josie’s work, and copies of all Speech and Language reports. I had another chat with Sarah and she discussed the implications of the Assessment. How would we handle the situation if it shows no signs of dyslexia, if the problems are caused by a low IQ, or other issues? I said I just needed to understand what the issues were, and then find out how to support my daughter, as she is really struggling at school, and I was worried for her future.

April 2013 Dyslexia Assessment day… Josie enjoyed the assessment as Sarah really is a wonderful lady. When we went back to collect Josie, Sarah took us to one side and said almost straight away, that yes Josie has dyslexia. Now we have to wait for the report for all the details.

Finally we have a diagnosis, surely now everything will fall into place…

Meetings

The Full Dyslexia Assessment showed all of Josie’s strengths and weaknesses, but I didn’t know what to do with these facts. I arranged a meeting with the school, and sent them a copy of the report. But everything takes so long that I emailed everyone I thought would have the slightest idea of what I should do next. A couple of people said that with some of Josie’s low scores she is at the level to require a Statement of Special Educational Needs.

I didn’t understand the first thing about Statements, so yet again I started obsessively Googling anything and everything. ‘Parent Partnership’ seemed to keep jumping out at me. They are funded by the Local Authority, so they are there to support and guide you, and they have done an amazing job keeping me on track and focused when I just wanted to get angry at everyone. They have all the right up to date information, and know which steps you should be taking next. One lady in particular helped me, and she really was beyond amazing, she was my lifeline when things seemed impossible.

I found this amazing book; Guerrilla Mum: Surviving the Special Educational Needs Jungle by Ellen Power. I can’t thank her enough for writing this book; she gave me inspiration to become the expert, and read about the Special Educational Needs Code of Practice, and learn what rights children have in education.

“Remember the Guerrilla Mum Mantra: Don’t take no for an answer, never give up. If in doubt, telephone, email and write letters.”

I had a follow up meeting with Sarah, the lady that had carried out Josie’s Assessment, amongst other things she explained that Josie has trouble processing the sounds in words, and that she needs specialist teaching.

I signed Josie up to attend a ‘Children Will Shine’ Dyslexia Workshop on a Saturday morning. This was run by Croydon Dyslexia Association (through the British Dyslexia Association). Josie loved this group on a Saturday morning. She learned ways to learn tricky spellings, and it boosted her confidence. She even didn’t mind the 25 mile round journey, as she wanted to learn and knew that the teachers had the time and experience to teach her. It was also so important for her to meet other children with dyslexia.

Finally it was time for the meeting at the school with the Special Educational Needs coordinator (SENCo), Head of Inclusion and a Specialist Dyslexia Advisor. We talked about Josie’s progress and the things school have put in place for her. We discussed things in the Dyslexia Report and then the school turned the subject to the fact that I should maybe consider looking at specialist schools that can offer her more help. They were worried that the gap between herself and her peers was widening, and she would become less interested in school. The bottom felt like it had fallen out of my world, I had never considered the fact she would have to move out of mainstream school.

The school had mentioned that Josie would need a ‘Statement of Special Educational Needs’ to get the help she needs, and that they would continue to build their evidence before approaching the Local Authority to carry out a ‘Statutory Assessment’. Josie would need to see an Educational Psychologist at the school, but she wouldn’t be available until the new school year (in October 2013).

The summer holidays came… my piles of research were building. I had to wait… (again!)

Statement of Special Educational Needs

September 2013, and Year 8 has now begun. I was so worried about Josie’s education and frustrated by how long everything takes that I decided to apply for a Statement myself. I wrote to the Head of the Education Department at the Local Authority (LA). I just put the facts that Josie has been on School Action Plus for seven years, and that I want them to carry out a Statutory Assessment as she is falling behind even with a high level of support over such a long period. I showed the letter to Josie’s school SENCo and I was told to also add that the school supported my application.

The LA wrote back to me asking me to complete a Parental Questionnaire giving as much detail as possible and they wrote to the school too for copies of their records. Once they had looked at the information we had sent them, they wrote to me and the school to say yes they would carry out a Statutory Assessment to see if Josie needs a Statement of Special Educational Needs. I was now asked if I had any more evidence that I wanted to add to the case, and they collected reports from all the professionals that had been involved with Josie, including the Educational Psychologist whom she had just seen. All of this information was to be submitted by January 2014.

Waiting again, I was so nervous. But all the professionals seemed sure that Josie needed a Statement, her needs were clear and very obvious. It was even mentioned that the process should be quite quick as it was obvious that she needed support. But in February 2014 I received a ‘Note in Lieu’. This is a letter that details all the support she needs and confirmed that she would need Speech and Language Therapy (SaLT). But this Note in Lieu (NIL) is not legally binding. The support doesn’t legally have to be provided, and there is no extra funding to provide the support.

I arranged a meeting with the Caseworker from the LA and Josie’s SENCo at school. We talked about all of Josie’s needs. I don’t feel confident in meetings that I can get all my points across, so I typed up a list of all the main facts I felt the LA needed to know, and instead of reading from the list, I gave them copies to work through during the meeting and then to keep for their records. They suggested several ways the school could try to provide the support. But none of the suggestions were possible; also SaLT is not funded at Secondary level without a Statement. They agreed that Josie’s needs, now seemed greater than they realised from the reports that they have, and they said that they would send this additional information back to the Panel to review at their next meeting.

Then in March 2014, I found out that they have issued another Note in Lieu. This one is more detailed and it also says they are sending someone into the school to suggest ways they can help Josie. Totally unbelievable, how can they not give her the help that the Educational Psychologist, Dyslexia Specialist and Speech and Language Therapist all agree she needs.

I had no choice but to apply for a Tribunal, to take the Local Authority to Court…

Tribunal

All the reports clearly state how far behind Josie is, and how much support she needs. My only way forward now was to apply for a Tribunal Hearing.  I spoke to Parent Partnership who said I would now need help from www.ipsea.org.uk as they are funded by the Local Authority (LA).

I tried ringing IPSEA unsuccessfully for a couple of weeks, and I went onto their website and it was straight forward to download a form asking to Appeal the decision made by the LA. I filled out my name, ticked a few boxes and then attached all the relevant paperwork that showed Josie’s needs and the information from the LA. I heard back from them with an Appeal Hearing date in December 2014. I was shocked that I would have to wait 8 months, but then I read all the paperwork and saw that this was for a good reason. It gives you time to work with the LA to try to come to an agreement before you get to court. All correspondence between us and the LA now had to be emailed to the Tribunal Offices.

Josie is now at the end of Year 8, and I was so worried that time is running out for her education. In Year 7 I had been told that with the right support she can catch up. Now I’m looking at a child that is becoming less interested in school as she falls behind and feels increasingly more stupid every day. Thankfully she still believed me when I said I could make things right and get the right help for her. She would get up for school every day, and she would try so hard. I had to make this right for her. I had to keep believing in myself.

I couldn’t sit back and wait for answers to come to me. I wrote to Mr Gove (Head of Education – total waste of time) and my local MP (brilliant), I was constantly contacting the lovely SENCo at Josie’s school, the LA, and anyone else that I could think of. This really was a daily battle.

I’m really panicking now. How can the Education System be so wrong?

Draft Statement – Am I the only Expert

At the beginning of August 2014, I received a draft Statement of Special Educational Needs. I was over the moon and felt yet gain that everything would now be solved. But looking into it properly, I didn’t feel it was specific about Josie’s needs. It looked good at a quick glance, but there was no real advice or guidance.

I couldn’t get hold of Josie’s school (until September), so I headed back to Parent Partnership, they had a look through it and agreed with what I had written on it, and that it is too vague in places. They could only offer a little bit of information and recommended that I head back to IPSEA. I tried them again but still couldn’t get through.

I wrote endless emails to the LA querying everything in the Draft Statement. They said they needed a reply from the school in order to answer a lot of my questions. But school won’t even receive it until September. By the time School did see the Statement, they through a couple of questions back at the LA. I was worried as you only have a few weeks to appeal a draft Statement.

I spoke to the LA and finally they agreed that Josie’s school haven’t got the right support in place. They said I should look at other schools in the borough.

I phoned the BDA helpline and I was put through to a lovely lady who really listened to me and empathised, and made me feel like there was still a way forward.  I said I felt the only option was for Josie to go to a Specialist Dyslexia School but that there were none locally. I remember boarding school being mentioned as an option during the phone call.

She told me that I was the one who would need to prove that none of the Local Authority Schools could offer Josie the right support.  I would need to contact, and actually visit all the local schools. Send them a copy of Josie’s Ed Psych report, and request in writing what support they can provide for Josie, or to ‘put in writing why they cannot meet her educational needs’.  I think she also recommended getting in touch with SOS!SEN as they are close to me and have a walk in advice centre.

I found SOS!SEN in Hampton Hill, they had a walk in appointment session the next morning, so I went along. They suggested the CReSTeD website of Dyslexic Schools and they pulled out a little book that listed all Specialist Schools. They mentioned a few (one in particular). They also gave me huge amounts of advice on what to put in a letter to the LA, and to give them a dead line. They agreed that I needed to go and speak to all the schools in the borough and get facts about what they can and can’t offer Josie. They all agreed that they couldn’t offer any more than the school she is already at.

During the time I was contacting all the local schools, I booked an appointment to view Moon Hall College (Reigate), and I was totally blown away by this magical school that offered more dyslexic support than I could ever imagine in my wildest dreams. That was the best and worst day of my life. I have now seen the dream, how on earth do I make it a reality.

I completed the forms so Josie could attend a taster day. She went along and absolutely loved it. She made loads of friends and for the first time she could see that there are lots of other clever children with dyslexia, she was not alone in her struggle to get through school.

We had to wait for feedback from the school; this got a little complicated as they had to make sure they had exactly the right support for Josie. They thought her needs might be greater than they could cater for. Being a small school they can’t get in extra support, they just have what is already there. I kept the LA up to date with almost daily emails of all the information I was gathering.

With the worry of not getting into Moon Hall College, we booked Josie in for a taster day at The Moat School (Fulham), while I was there they said that if they couldn’t help her then maybe Blossom House School might be able to help her. Josie absolutely loved it at The Moat School, and yet again she made lots of friends.

Now we have seen two schools with amazing support, but how do we get the LA to agree to send her, as they are both Independent Schools with fees way beyond my budget.

I have had all the advice I can find, but the LA have a track record of saying no to what seems like screamingly common sense. I had heard that IPSEA sometimes go to court with people, so I needed to try them again. It was unbelievable how long it takes to get through to them, as they are volunteers working from home. They are all very experienced people in SEN Education Law, and do an amazing job.  I finally got through and was given loads of brilliant advice, I was recommended to try and get Legal Aid and get a Solicitor to help me. I was also offered the possibility of one of their people helping me if I have to Tribunal.

So by the time I was next in contact with the LA, I had the name of a solicitor to add to the massive stack of paperwork they must have accumulated about Josie.

It felt like every day I had to prove that I was not going away. This has had huge implications on my whole family’s life. I’ve talked of nothing else, I have been totally consumed. My brain doesn’t stop swimming with questions, worries, points I need to write down, new facts I need to chase up, my next line of attack, who else I can turn to for advice and support.  When I met people I could see the look of horror in their eyes, knowing what I was going to start rambling about. I couldn’t switch off, even when I was asleep.

Sometime during this chaos, Josie had her appendix out, and even when I was sitting with her afterwards, I was on the computer most of the time, day after day, next to her, typing away my next battle plans.

Happy Endings

The night we arrived home from The Moat School, we received a phone call from Moon Hall College offering Josie a place.  Now we can name Moon Hall as the school on the Statement, but we have to wait again for the LA to send all the information back to the panel meeting. My finger nails are now bitten down to the knuckles.

The Tribunal date we had was for ‘failure to provide a statement’, so that hearing was cancelled when we received the draft statement.  If the LA refused to send Josie to Moon Hall we would have to apply for a new Tribunal Hearing, which probably wouldn’t be until May 2015, and Josie would be coming up to 14 and almost too late to salvage her education, which is crazy when she is still struggling with a lot of the basic things.

Then the amazing day arrived and I received the phone call saying that during the meeting, The Panel has agreed to send Josie to Moon Hall College. Then letters were signed and exchanged, and a start date agreed for 6th January 2015.  We were all over the moon. Josie was so happy even when we told her she was getting a new school uniform for Christmas.

In her first week, Josie came home from Moon Hall College saying that she now understands maths, and when she doesn’t, the teachers explain it and make it easy for her. She really has become more confident, and a recent parents evening was amazing. We are now enjoying discussions about GCSE options, even though she needs a lot of support in place, anything is now possible.

Now we want to share our story so others can see that you have to fight to get any help.

1 in 10 people are dyslexic.   That is three children in every classroom.

The whole education system is wrong.  There needs to be more funding in place to give the right support to children from a young age.

Without support people can end up dropping out of society, causing greater expenses on the unemployment and legal systems.

With the right support people can conquer the world or be anything they wish.


9 responses to “A Long Battle – The Whole Story

  1. […] and amended it slightly (spell checked it), and it is now stored under a separate tab ‘A Long Battle – The Whole Story‘.  Sorry it is so long, I’m not very good at being […]

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  2. We love your blog and know if will help lots of parents – hope you don’t mind but have added a link to familyvine.me to our parents blog on our charity website Dyslexia-Assist.org.uk by parents for parents, by children for children.

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    • Julie says:

      Hi Valerie and Lisa, thank you very much for your kind comment. I really hope that between us we can get basic information out there to parents, so they know where to find advice and help. Please feel free to share as much as you wish. Kind regards Julie

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  3. Mum to a dyslexic says:

    Hi Julie, found your blog as on my path to beginning fight to change schools for somewhere similar. I’m worried that my LEA will put up huge fight and am worried about whether anything can be achieved before another dyslexic’s education is put at real risk.
    Am worried about putting too many identifying details here but I need to find out as much as possible. If there is more detail you have that is not available on the blog is it available anywhere else?
    Mum to a dyslexic

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    • Julie says:

      Hi, thank you for getting in touch. It really can feel very lonely and stressful, trying to get the right information and support for yourself and your child.

      Have you looked on the http://www.sossen.org.uk website? They have a telephone advice line, and also walk in centres. I found the walk in centre in Hampton invaluable, as I really needed face to face advice, and someone experienced to give their views on all the reports.

      The British Dyslexia Association are really good, and hopefully you should have a Local Dyslexia Association near you.

      My email is familyvine@aol.com, feel free to message me. I’m not an expert, but hopefully I can help a bit. Julie

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  4. Sara says:

    Thank you very much we are just starting the battle and the investigations and constant googling to get my nephew the support he needs. He has just been assessed by an Educational Pyschologist and we have the report that states he has dyslexia. We are so angry however because what we weren’t aware of was that he has been under Senco at the school since Year 1 and it states he was responding well, but in year 4 his progress came to a halt. We want to understand why it took from year 4 to the end of year 5 to get him assessed and to finally have a meeting with his parents to let them know he was under special needs even at the school. We have asked the school about applying for an EHC but they seem to be putting us off, saying its not worth it and that he doesn’t need one unless he is going to need a special school which they say he doesn’t. He is 10 and has a reading age of 7. He is also struggling with maths. All the resources you mention we will look into. Thanks very much

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    • Julie says:

      Hi Sara, it is heartbreaking that this is happening to so many children. The Government are not investing enough money/training to support these children. They are happy to leave children till they drop out, everyone gives up on them and they become an issue for the next government.

      For advice on what the education system should be doing, and also what you can do yourself have a look at http://www.sossen.org.uk or try their Helpline 020 8538 3731 M-F 9.30-12.30 & 2-5 (this is the last week before they close for the summer).

      Or if you are on Facebook try ‘Dyslexia support UK (UK only)’, there is lots of support, lots of friendly helpful advice.

      You have now taken the first few steps to finding out how the education system really works. EHCPs are not just for Specialist Schools, they can/do support children in mainstream schools too.

      Good luck with the battle. Get as much help as you can, and fight for his right to specialised support.

      Julie

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      • sarajp says:

        Thank you so much will get onto Sossen now. Really appreciate you taking the time to reply.

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      • Julie says:

        Also, I applied for Josie’s Statement, which is the old name for the EHCP. This isn’t because I’m clever or pushy. I just found out more and more over time and gave up waiting for the school. It’s basically just a letter to the Local Authority saying I want you to find out why my child is failing in school. But with the right wording. I’m sure there are loads of templates around to copy. I think the Local Authority school have a template or form for you to apply with. But speak to SOS!SEN first. 🙂

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