A mother’s SEN statementing battle for her Asperger’s son

Many children with Asperger syndrome go undiagnosed for years, some into adulthood. Even when they are diagnosed young, it is always a lottery if your child is in mainstream, as to whether the school staff have a real understanding of Asperger’s beyond the stereotype. I know that my own sons suffered with this misconception that AS children were a certain ‘way’ and if they weren’t, then they either couldn’t have it or just got treated with the same strategy that worked for another child with AS – without looking at what the child her or himself needs as an individual.

Families, often depending on the area or school, find themselves blocked at every turn as they try to find the right educational solution for their child. One parent, Sema Cemal has struggled for seven years to get her son the educational services she believed he desperately needed.

In our guest post today, Sema raises serious questions about educators and local authorities’ understanding of Asperger syndrome and asks why some children get the services they need while others don’t stand a chance. At the end, don’t forget to add your views.

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Sema’s story

 

I am a Chartered Psychologist and a single parent of two. My daughter is 13 and has always been happy at school; she loved primary school and is thriving in secondary school.  My son is 12 and from day one he has struggled with life and school.

My son has always been a special child. He is loving and compassionate, bright and creative.  At the age of one, he developed an interest in vacuum cleaners.  This intensified as he got older and what initially was quirky and endearing became a consuming obsession with cleaning gadgets.

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I began to notice he was different from his peers at nursery school, mainly because of his obsessions but also due to his difficulties interacting with other children, distress in social situations and his difficulty separating from me.

He was diagnosed with high-functioning autism/Asperger syndrome at four-and-a-half. I will never forget the Paediatrician’s haunting words: “I’m most concerned about his emotional well-being and mental health.  Children with Asperger’s are much more likely to suffer from depression and suicidal tendencies in later life.”

I could not have known then how prophetic these words would be and how my son’s mental health would be held hostage by inexperienced educators and a local authority more focused on its budget than providing a healthy educational environment for the special needs community.

The “hidden disability” bites at home

I began to learn more about Asperger’s, the ‘hidden disability’ that would mask my son’s needs and make his difficulties ‘invisible’ in school.  If a child has a physical disability, this is visible and easier to deal with. But my son was a bright child with an advanced vocabulary and staff did not acknowledge his serious difficulties coping at school.

In the first year of primary school he suffered with anxiety attacks every morning about going to school. The scariest times were when he’d threaten to harm himself.  At the school gate, he would have meltdowns and I would have to physically drag him in. He was often hyper and aggressive when he got home.

The teachers assured me that he was happy and calm at school.  It is a fact that children with Asperger’s ‘hold it together’ at school, trying not to get into trouble or be singled out, and then ‘explode’ when they get home.  After several meetings with staff, it became clear they had no understanding of Asperger’s and soon he was punished for saying or doing things that were a symptom of his autism.

I tried moving him to a new school but he became more distressed. He hated Sundays because he had school the next day. Then the school dynamic changed; he was bullied daily by other children who called him “stupid”, “disabled”, “spastic” and teachers were punishing him for being distracted, too slow or for fidgeting.

Again, staff dismissed my concerns and made me feel like a neurotic, over-protective parent. Meanwhile, the daily fight to get my son into school and his challenging behaviour once he came home was taking its toll on my family – the atmosphere at home became unbearable.

Sema

Eventually I had to give up work – the daily stresses and the ongoing fight to meet my son’s needs became a full-time job.  My days were spent calling helplines for advice, drafting letters to school, attending meetings with school staff and keeping a daily record of my son’s crippling anxieties (this would provide crucial evidence to support our case later on).

Meanwhile the anxieties increased and my son was making suicidal threats related to school. As a Psychologist I could see the severity of the problem; as a parent I felt completely helpless. I knew I had to get outside help. Our GP helped with a referral that led to an assessment by the Tavistock Centre in London who recommended weekly psychotherapy immediately.

Statementing battles

The support and validation from the Tavistock fueled me to seek an independent opinion on the situation at school. I hired a specialist solicitor who determined that the school was failing to meet my son’s needs and he needed a Statement of Special Educational Needs.

This was the beginning of a long, costly battle to meet my son’s special educational needs. I had to pay for three private assessments – Educational Psychologist (EP), Speech & Language Therapist (SALT) and Occupational Therapist (OT).  Their recommendations were unanimous – my son had significant needs and needed a Statement.

Despite these expert recommendations, we had to fight the local authority all the way before we received an acceptable Statement. We had to go to Tribunal and I had to pay the legal fees and for expert witnesses to attend. We won the case. The victory, however, was short-lived.

Six weeks after the support was put in place, it was decided that this be reduced (SALT from twice weekly to once termly; OT from weekly to fortnightly) because my son was “doing so well”. I was stunned.  Surely it was obvious that he had made progress during this short time because of the support and it was far too soon to reduce the support. I spent the next six months ‘fighting’ to keep the support in place.

The search for a Secondary solution

The biggest battle, however, was about to start – trying to get my son into a suitable secondary school.

I researched and visited local schools and found there was very little provision for children with Asperger syndrome. Several schools were honest enough to tell me they could not meet my son’s educational needs.

I visited the only secondary school in our borough that boasted a unit for pupils with high-functioning autism. What I found, however, was a small, cramped classroom with mostly low-functioning children that had severe behavioral difficulties. I knew my son would not cope in this environment.  When I discussed my son’s Statement with the unit head, I was told they were unlikely to meet his needs.

I came across an independent school – non-specialist but with small class sizes, on-site specialist provision and a unit for high-functioning children.  It was 25 miles from our home, but it seemed perfect.  After a two-day taster session, my son declared he loved it and was offered a place.

The local authority, however, refused to place us at this school.  Instead, it named the school in our borough that I had visited and that was obviously unsuitable. My solicitor lodged an appeal and I prepared for a second Tribunal, more expensive assessments from experts, additional legal fees and increased distress to my son.  Just a few days before the Tribunal hearing we were told the local authority would place my son at the school of our choice providing I paid for the transport.

I spent the summer worrying about whether my son would be happy at this school.  Whilst I was certain it was a good school, I worried about whether he could cope with the journey and whether his school phobia was so ingrained that he would never be happy in any school.

The big day arrived. The first day at his new school.  An early start, we were up at 5.45am.  I drove to the bus pick-up point full of anxiety.

He got on the bus happily. And he came home ecstatic.

He has been attending this school for almost a year and he loves it.  Not once has he said he does not want to go to school.  He has made friends, he enjoys lessons and does his homework on his own.  Of course there are things he finds difficult and stressful, but staff are quick to deal with these issues, addressing them before they escalate.

As for me, after seven years of fighting, each time I receive a letter from the LA my heart misses a beat and I think the worst. The experience has definitely left me traumatized and I still have many questions:

  • Why did I have to fight so hard for so long to get the local authority to meet my son’s obvious special educational needs? This is not an isolated case – I have met many parents in similar situations. Some have taken out loans or re-mortgaged their home to pay for the legal fees and professional assessments;
  • Why was something so evident to independent professionals (my son’s anxiety and depression) not acknowledged in school? And why was something as serious as suicidal thoughts not addressed with the utmost urgency?

I think of those parents who are unable to fight like I did – parents who do not speak English well, who cannot navigate the system or afford the legal fees.  As I celebrate our victory, I have to advocate for those left behind. It is a sorry situation when only those who have money, time and an advanced education can get appropriate schooling for their children.

Read the full article at: semacemal.wordpress.com

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Thanks to Sema for her story. Of course in September 2014, it’s all change for the SEN system and parents should have access to an independent supporter – the DfE says every parent who wants one should have access. Do you think the new system will make stories like Sema’s a thing of the past? Let us know in the comments.

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Tania Tirraoro

Founder of Special Needs Jungle, journalist & author of two novels and a guide to SEN statementing. PR & social media expert
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About Tania Tirraoro

Founder of Special Needs Jungle, journalist & author of two novels and a guide to SEN statementing. PR & social media expert
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What's your view?

33 Responses to A mother’s SEN statementing battle for her Asperger’s son

  1. I do hope so Tanya but I don’t think it will improve quickly. Will parents be able to choose their independent key worker? Or will the LA choose if they are funding?

  2. StephsTwoGirls says:

    Reading this worries me so much as I fear that I’ll be having exact;y the same battle over secondary in 4 years time. I wonder if the new Bill will have changed anything much in that respect. Discussing all aspects of the child with Special Needs is a good step forward, but will mean nothing if not followed up with the correct provision :(

  3. Catherine Hall says:

    It is heartbreaking that children still have to be in a state of crisis before getting their needs met and that parents have to fight and go to tribunal to salvage the situation.
    I have a 20, 17 and 14 year old with ASD and I am currently remortgaging the house to pay school fees ( Guernsey resident so no tribunal) and my boys are doing fine because I have been lucky enough to find the schools that meet their needs. To do so though one has been educated in Gloucestershire and one has spent a couple of years in Derbyshire. I now react with fury whenever anyone within the education system says ‘ oh but he is coping’ . Just coping isn’t good enough, our children should be placed where they can be happy, thrive, make progress and achieve to their potential.
    I hope the new changes to the UK system help to resolve some of these problems. Guernsey hasn’t even caught up with your previous system. We currently have no means of appealing a decision taken by our education department. They won’t currently accept any independent recommendations as having any validity ‘ because the independent professionals don’t understand our education system or how we deliver services’.

    • Sema Cemal says:

      Decisions are often cost-driven, but will cost the local authority much more if the child’s needs are not met early – the later the child’s needs are met the more it costs the tax payer

  4. Fiona Lockhart says:

    One day I hope that we will be able to hold to account all the so-called ‘professionals’ and Local Authorities that damaged our children so much and branded us as ‘bad parents’ in order to cover themselves. I will never forget the years of anxiety, distress, isolation, exclusion and battling the ‘system’ that my son and I had to go through before he could get the education he needs. Thankfully,
    he has been there for over 2 years and now doing well. But we will never get those ‘lost years’ back and the effects still shape our lives today.

    Like Sema I too am concerned for the children and families that are still going through this now.

    • Sema Cemal says:

      Thank you for your heart-felt comment. I agree, we will never get those ‘lost years’ back – how do we overcome the battle, I don’t know. In my case the outcome was good, but it has left me feeling battered and determined to fight this cause.

    • DJS says:

      My thoughts exactly Fiona. I often find myself hoping that, one day, we (or our children) can make a claim against the schools and authorities that have damaged them so much. I will never forget how my son and daughter have been treated and the impact it has had on them and me and their dad!

  5. When reading this I mostly felt that I was reading about my life and that of my daughter! She is in an Independent Special School now but just when she began to thrive our LA decided to take it away because she could apparently suddenly cope with walking back into mainstream FE college at transition to Post 16! This despite school staff and professionals clearly saying she will not cope. So we are back in the tribunal process fighting an aggressive, budget only orientated LA which, I’m sad to say, has been a pathfinder authority for the new SEN reforms but shows no sign of an improving attitude to.parents of and children/young people with this type of “invisible” difficulty. I hope that the SEN reform will make a difference but it will only work if LAs change attitudes and become less driven in terms of saving money.

    • Sema Cemal says:

      My experience was clearly not a one-off! So many of us are fighting! I think the thing that bothers me so much is that, even if you win one leg of the fight, you fear it will backfire and you have to start again, as in your case. Good luck – my advice is keep going and lets try to form a united alliance/front, to present our side of the battle

      • Thank you Sema. I totally agree that we should try to form a united alliance/front to present our side of the battle as, sadly, I’m not sure the forthcoming SEN reforms will change much immediately and may, in fact, make things worse for a while ;( Thank you too for writing about your experience as it always helps to know that there are other families battling away because sometimes it can feel very personal! In the long run, however, I hope that there will be no need for families to have to battle and I hope, like you, that I can make a difference to enable that to happen :)

  6. A great guest post. Having one autistic child statemented and in SN school and one nigh functioning, unstatemented autistic child, I see both angles of the new act. It is my high functioning child I fear for most, he will be seen as “coping” and swept under the carpet and because he does not have a statement any additional support is gong to be virtually impossible to obtain. His primary school does not acknowledge his diagnosis either.

    • Sema Cemal says:

      Thank you, it was quite difficult to write and at times I felt like giving up. But I feel for all parents having to live through this ordeal, it’s simply not right. Unfortunately so many educators ‘sweep it under the carpet’ but when they do that, it backfires on our families – what is kept “under control” at school becomes a major challenge in our homes; they need to become more sensitive to our childs’ needs and accept the link between home and school.

  7. worried mama says:

    This happening all over the uk, It really depend on your location. This terrifies me :-(

    • Sema Cemal says:

      I hope my story does not make parents feel more worried. I hope it inspires others to keep going with what they believe, not give in and give up – that is what the local authority rely on. In my case, I had fantastic advice from great helplines, especially the NAS Education Helpline and IPSEA. There is great support out there, we just need to support each other.

  8. Christina Cramsie says:

    I have had pretty much the same experience as you Sema, except that my son did not get a statement until he was 14, after trying since he was 10 to get one. I also had to get private reports done, luckily I did not have to go through tribunal, my son has been at specialist school for hf asd for 6 mths now.
    I can’t see it being any easier to get a EHP plan, the only advantage for my son is that he may qualify for an EHC plan when he is 16, whereas in the old system he would lose his statement at 16 and be considered too bright to have a learning disability assessment. My concern now is that at 16 all services stop (cahms, pediatrician etc) yet he will be expected to stop in education until 18, and won’t be considered as an adult until 18.

  9. Sema Cemal says:

    So sorry you had to go through what I did, you never recover really, do you? I am a qualified social researcher but my career ended when I had to protect my son and ensure his educational needs were met. I am now considering doing research in the special needs field. So much is unknown with the new EHC but I believe we can make a difference. I feel it is time for us parents to unite and make a positive impact

  10. Sema, thank you so much for sharing your story, which is so similar to many of us, I shuddered when i read your comment of how your sons mental health was held hostage. that is so true for me and 2 of my boys, but I also felt inspired Sema that regardless of money or education,of which I am lacking in both, a ferocious parent love that ‘sees’ and celebrates who our amazing children are can move mountains and win victories. We ‘must’ empower each other as parents to ensure this system changes and no one is left behind. Thank you again.

    • Sema Cemal says:

      Thank you for your comments, they really inspire me to take this further. When you go through a long costly ordeal like this, it is hard to find the motivation for anything – I felt damaged, broken and alone. I am a qualified researcher and my dream is to carry out research amongst parents to highlight our story even further and with professionals to find out what they really think.

  11. Nikki Holloway says:

    Sounds like our story, except we could only find schools that might work for our son that were far enough away that boarding was the only option. After two boarding try outs in two different schools my son was adamant he did not want to be away from home ( took 10 days for him to get back to normal afterwards). The independant schools more local to us said they couldn’t accommodate our sons needs ( though local authority said he was fine in a mainstream school). We felt our only option was to home educate. It works for now, but I worry about accessing qualifications in the future, but at least his mental health is Better now.

  12. DJS says:

    Can identify with this. My autistic son had a major breakdown in MS primary school due to lack of support! Consequently it wasn’t until my son developed mental health problems that people started to listen to us but it should never have got to this. To ignore my son’s needs (and diagnosis) and not provide any support, in my opinion, put my son at risk of mental health problems which is just what happened. Consequently it has taken five years to help him recover (he is in special school but repeated mini breakdowns has led to periods of school refusal). As a result he has lost out on many opportunities which makes me feel quite sad to be honest. However, through our hard work (and his courage) he is now emotionally much stronger and starting to think about college this autumn. For the first time in 16 years I feel hopeful; I just hope college can support him properly.

    Oh, for those that are interested my son has an ASD, SpLD and anxiety disorder and we have a LDA 39 for him (he’s due to move to college this autumn) which was based on his statement of SEN. I have been told that the rising 16′s in our area will be a priority group for the new plans but we shall see; I don’t have a lot of confidence in our education system to say the least!

    As for my aspergers daughter, things are much harder not least because the understanding of girls on the spectrum is really poor. What knowledge there is seems based on the male stereotype so it has been a continual fight for me to get professionals to recognise her difficulties. Eventually I did get her diagnosed and statemented but unfortunately there is no school in our area that can meet her needs. After two or three failed attempts (including a special school who showed no knowledge in her anxiety disorder) she adamantly refused to go back to school! I have now turned to home educating her and so far so good; her emotional/mental health is slowly improving.

  13. DM says:

    Sema, reading your story was like reading about our life and I’m so sorry you and your family have had to endure the trauma of it all. Your article is very well written and certainly highlights how difficult and challenging it is trying to gain understanding from others of your child’s needs and having those needs met.

    We are currently embarking upon our 3rd tribunal in a year to fight for a place for our AS 6yr old daughter at an independent specialist. The majority of our girl’s needs have been ignored by the LA and we struggle to accept that in an effort to save costs they are prepared to subject our child to the worst possible life for her with dangerously high risk to her long term mental health. It shows up the whole process for the sham and money-saving exercise that it is and you quite rightly point out that only parents with the financial ability, understanding of how processes work and mental strength are able to challenge the system. We have been forced to home educate our child for the past two years and if we lose our appeal we will continue to home educate. I have not been able to return to work since maternity leave ended and there are days when I get choked up and have to swallow any upset when my daughter asks “how long until I can go to school?”, or when I see her harming herself because we cannot get access to the therapies that she so desperately needs.

    To be honest we can’t ever see it changing and we are very worried about her teenage years and beyond. Meanwhile I’m home educating, caring, letter writing, researching, filing, making phone calls and trying to ensure my daughter is OK as much as can be. I don’t think I have fully accepted and adjusted yet to being a mum who has a child with special needs and the distraction of having this lengthy fight with the LA is denying me the time I need to come to terms with our daughter’s diagnosis.

    Your post gives me hope that we may yet battle through and well done to you for fighting tooth and nail for your child, I know how hard that victory was fought and won.

    • Sema Cemal says:

      Dear DM,
      Thank you so much for your lovely response. I was extremely moved by your personal story – 3rd Tribunal in a year!!! My heart goes out to you. It is hard enough having a child with special needs (like you, I don’t think I’ve really had the time to come to terms with this, having spent so long ‘fighting the system’. It has impacted our lives so deeply – the ongoing battle to get educators to acknowledge the very real significant needs of our child and the patronising, accusing response of those educators. I believe it is all money-driven and it literally is “the last man standing”. Do educators realise what they are putting us through? Do they even care?

      I hope things work out for you and I wish you all the very best. I admire you for pursuing this, and praise you highly for home-schooling.

      I don’t know the details of your case, but the more written evidence you have to establish that your daughter has needs which can not be met in a local/mainstream setting, the better your chances. I kept a daily record of my son’s experience at school and behaviour at home, I dragged him to the GP whenever he had a meltdown in the morning refusing to go to school (GP wrote letters on my behalf for the Tribunal). You need to get as many professionals on your side, unfortunately it’s costly if you have to pay education specialists but this, at the end of the day, helped us enormously.

      Good luck, I wish you all the very best.

      Sema

  14. Our story has been so similar to Sema….twicr over. At one point our youngest was tok stressed to attend and we had him home for a year whilst we carried on fighting. We didn’t win the placement we wanted but a different private specialist provision. This for the most part suits our youngest. Our eldest then had more issues in his specialist provision and became suicidal. We moved him to the same school as his brother and it has been a nightmare. His ststement says he should have a distraction free environment, his head teacher had told him he should learn to cope with disruptive people. He is being let down across the board. Both boys are supposed to have access to a computervto record their work, when they ask to use one they are told NO. Where do u go from here……our son id so stressed and not coping but can’t chsnge schools again :-(

    • Sema Cemal says:

      I’m so sorry to hear you are having such a difficult time. The more I hear from other parents the more concerned I become about the system. This relentless ‘battle’ to get what is basically every parents’ right – a child who is happy and settled at school – is so wrong, it’s bordering on criminal! I’m going to think about the key things that helped most with our case and write it up in my next blog. Good luck and I wish you and your family all the very best

    • Sema Cemal says:

      I absolutely agree with you, it is tragic and LA’s should be more accountable. The lengthy battle takes its toll, it costs us financially and emotionally. I hope things improve for you and wish you all the very best

    • Christina Cramsie says:

      Just wanted to say that I have the same problem at my sons specialist school, Janet, with them not providing a laptop.(along with other problems….) Even though my son has a private OT report saying he needs a laptop. I am trying to get the statement amended to say that use of a laptop is essential, but I don’t feel as if the LA don’t really want to do anything, and are hoping that I decide to take my son out and home educate (and save them some money!)

  15. ntmum says:

    Sema, Thankyou for putting into words what so many of us have experienced. My daughter was 13 when we finally got a diagnosis of AS, following Pathfinder LA’s refusal to assess “because her levels are above those required to meet our criteria for assessment” and “once CAMHS have dealt with her anxiety, she can return to school.” She then spent a year in a Pupil Referral Unit on medical tuition (2 hours per day) because the LA really don’t give a damn. We went to tribunal and won…but there is simply NO provision for girls with AS in my area (and many others too). Then followed a harmful year at a special school where her mental health deteriorated rapidly, resulting in me withdrawing her. Another solicitor, another tribunal to secure Education Other Than At School, an appeal for the type of home programme, LA hire a barrister, no longer entitled to Legal Aid, couldn’t fight any more, result no education for past year.

    The LA have acted against the best interests of my daughter at every step. Whilst my friends admire my determination and persistence, I feel as her mother I had no choice. Battling the system has controlled our lives for 6 years. I had to give up my job due to stress. I am no superwoman, I just wanted my daughter to receive an appropriate education suited to her needs. The LA have a different agenda. It is tragic that families endure this on a daily basis and time for LA’s to be held to account.

    • Sema Cemal says:

      You must be totally exhausted after this, my heart goes out to you and your family. Costly battles for what? It probably costs the LA more to fight a parent than to listen to what they have to say. What will it take to change the system? I wish you all the best and hope things work out for you.

  16. fighting mum says:

    I am feeling sad on many levels. The posts above could be written by me. My daughter has not been at school this year. She had a late diagnosis of AS 18mths ago. I feel a bad Mum for dragging forcing etc her to school just so her mainstram school could get the attendance marks. We have been throught hell as a family but what my darling daughter has been through is so much worst. Running away from school, dreadful self harm, Anxiety, depression, stess. She said she felt like and alien. Bullying, no friends, left out of social events which she would love to be included in but hardley ever asked or thought of, which up sets me (I have to be pleased that she is still with us as at times it has been so bad. My friend lost her son recently which has nothing to do with anything like this, it is so much worse for her. I still have her to fight for) . I have had to go thru the statment process alone in 29days as the school couldn’t/wouldn’t do it as daughter not at school. When she was attending part time I asked the school to arrange an statment for her but was told that as she was on School Action + she would get no extra help by having a statment so they would not do it. I tried to get her into a special school locally but they would not even let me look round oit as it would be wasting everyones time as she didn’t have a statement. With high sensory levels and communication problems at huge school was a nightmare. She has now missed out on over 2 years of education and if she is placed in the school I wish her to be in, she will have only months there as she will be 16 and will have to move on. On the flip side she attends an Rural college once a week and has no problem getting up and going there. Passing all exams (forgetting to tell me theat ahe even sat them)! The educational environment is everything. Trying to shove a square peg in a round hole has got to stop. Invest now in the correct schools and the Gov will not be picking up the tab in later life with these young people unable to work, mental health issues, self harm, etc……Sorry this is so long but this is only the tip of the iceberg. Like you I worry for other families who cannot fight like I do. I have stop work too as fighting the sysmtem is a full time job as is looking after my daughter welfare. I am now helping local mum’s to do what I have done. A wonderful local Mum has set up a FB site and I have joined…we all support each other and pass info nuggets.I feel empowered but so sad and furious with the situation we are in. Also I am now avoiding friends who ‘don’t get it’ and tell me what I should do, you know …my parenting skills. I worry about the future. Keep doing what you are doing Sema, as Mums we have to fight, whilst NT Mums just bask in the glory of their kids achievements in exams etc they have no idea of the thing we have had to learn and give up…I’d just bask in the glory of a happy child in a happy school which understood AS.

    • What a dreadful time you have all had! I’m so sorry to hear it. But well done on getting your daughter a diagnosis- it is always the first step to help.
      Don’t give up on help- the school were wrong to tell you she wouldn’t get extra help with a statement- what she would get is a proper assessment of her needs and you would be able to access those schools that require a statement to get in.
      As it is, the system is changing from September and we have written many posts about this. See the tab at the top called “SEN Reforms” instead of a statement, there is an Education, Health and Care Plan which can go up to age 25 if needed. Your daughter’s mental health needs can also he covered as well as her education needs- how she needs social help (education isn’t all academic).
      We also have several posts here about Autism and girls, I’m on my iPad do I can’t grab the links easily, but a search (top right) will bring them up. All the best, and do contact me if you would consider having your comment featured as a post by itself as it is a story many would empathise with.

    • Sema Cemal says:

      I feel so emotional after reading your emotional story. All I can say is well done for getting this far and I am so pleased the ‘system’ hasn’t worn you down and that you are managing to help local mums too. You sound like a fantastic mum so please don’t feel bad, it sounds like you are going a great job. I also dragged my son into school for years, despite his tears, suicidal threats and attempts … As parents we rely on “the professionals” to guide and advise us but unfortunately they are working from a different agenda and often the childs’ needs come last and, well parents needs don’t really come anywhere from my experience. So sorry you have been through so much – I’m hoping the new SEND Reforms will improve things but, who knows. As you say, our stories are the ‘tip of the iceberg’. Thank you so much for sharing and we must never forget, we all have the right to get the education our child needs. Sema

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