A statement of SEN – a cause for celebration?

Not really.  I feel a certain amount of relief that we are now at the end of a long haul of assessment and report gathering but that is all.  Reading my daughter’s statement has been hard.  It emphasises the negative side of her aspergers and it makes us wonder how on earth she is going to get on in life.  That pesky thing called grief has once more come a calling; it has slapped me in the face and reminded me of my daughter’s difficulties and rewoken my worries about her future.  I hate feeling like this; I want to feel positive but at the moment I don’t.   I feel a mix of sadness, anger and worry as I consider my daughter’s statement and what to do next.

My biggest worry is which school she will go to.  For all the work that has gone into drafting her statement, the real problem is educational provision or rather the lack of it.  As I’ve mentioned in this post, the provision for children with high functioning autism or aspergers is dismal in my area.  We have mainstream schools and special schools that deal with moderate learning difficulties or severe disabilities but there is nothing for those with high functioning autism and asperger syndrome.  Many children in my area are forced to travel outside the area to access specialist ASD provision but that provision isn’t always suited to girls in my opinion.  My son’s school for instance is male dominated; there are few girls and I know that however good that school is my daughter does not want to be in such an environment.  She has told me so.  In fact she says she wants to go to our local mainstream secondary (now an academy).  I think she wants to go there because she is familiar with it (her elder sister attended) and it is nearby but I have my doubts that she will cope with the busyness of the school as well as the social demands that will be placed on her.

Nevertheless we recently organised a meeting with the academy and were met by a kindly SENCO (special educational needs coordinator) and his staff.  The SENCO was already in receipt of a copy of my daughter’s statement and had gone through it before our meeting.  He told us that as it presently stands they cannot meet need.   I wasn’t surprised to hear this because the way the statement is worded suggests that my daughter should attend a specialist ASD school which would be fine if there was one nearby but there isn’t.  The only alternative is to amend her statement so that she can get a teaching assistant but of course this then raises questions as to whether a TA will be trained and experienced enough to support her adequately.  Ideally I would like my daughter to have access to a trained autism teacher but this school has no specialism in autism and aspergers.  So what to do?

I have not accepted the statement in its current form because I need further clarification of what is written in the educational psychologist’s report to fully understand the extent of my daughter’s difficulties.  I hope to have a meeting with our local authority about this very soon.  I also need more time to look around schools.  With the end  of the school year  soon upon us the opportunities to look round schools is running out.  The academy has agreed that if we do amend the statement to enable her to attend with TA support (they’ve suggested 25 hours) that we will meet again in early September  but we are having doubts that this is the way to go.

Receiving a statement so late in the academic year has made me angry at the incompetence of her primary school.  I raised my concerns about my daughter at least three years ago which was time enough to get her assessed and statemented in time for transition to secondary school.  However the SENCO was obstructive and refused to accept that my daughter needed a statement even when challenged by the educational psychologist.  The SENCO was so obsessed by statistics and academic levels that she could not see that my daughter’s aspergers was  a barrier to learning.  She did not understand autism and aspergers and no matter how hard I tried to help her understand my daughter, she didn’t want to know.

Now we’re in a situation where the statement has come in too late to access a specialist unit at another local mainstream secondary school which accommodates those with language and communication difficulties.  This is the only place in town which I think could have suited my daughter but now the unit is full and we are in the dilemma of either sending my daughter into mainstream classes or outside the borough to a special school.  Neither are particularly appealing.

Going out of town  requires a lengthy journey either by taxi or minibus.  As my son experienced, children are picked up by a mini bus on a round robin trip which means they are on that bus for nearly an hour before they even start their school day.  My son found the travelling very stressful because it took him away from his home town.  Not surprisingly he suffered a lot of anxiety which probably contributed to his latest bout of school refusal.  I find it disappointing that council officials think it is acceptable to put vulnerable children through this.  Do they not realise that autistic children can be overwhelmed by the  sensory difficulties of being on a noisy and smelly bus and in close physical contact to others?  Of course part of the problem is due to insufficient provision in our town and the need to buy special school places out of borough.

If only they would stop shoving our children out of town and establish a new unit or school that is local to our children.  This is what I would like to see; a unit equipped to support those with high functioning autism/aspergers.  This unit could be linked to a mainstream school so that when these children are ready to join the mainstream environment they can do so.  I know I am not alone in wishing this; there are many parents in my area who think the same but it seems that the lack of will (and resources) are the factors for this not happening.  Of course the latest fashion is for free schools but how can someone like me who is already busy caring for two special needs children find the time and energy to do this?

So here I am, with a draft statement of SEN in my hands, about to embark on another part of the journey – finding a school.  Out of everything we have gone through, finding educational provision for my autistic children is the most challenging part of this journey.

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27 Responses to A statement of SEN – a cause for celebration?

  1. 1funmum says:

    Thank you for your kindness back. I did not want to add to the negativity that you got that day from your first response. I really love your blog. I read it cause it’s real. I read it cause it’s from your heart. I did read your message back to me. I have to tell you that my child giving up is my greatest fear. He’s young now so he has to go but when he reaches a teen, if the work is just too hard. If having to be brave and do twice as much as others to keep up is too hard, will he drop out. There will come a time when I can’t influence that decision half as much as I would like to. At 16-18 they can start to make those decisions here with out concent. I have seen the depression part too. Well about the way a mom treats another mom. The people who think special needs means ” bad mom”. I have to say mom bullies are hard that’s what I took from the first comment. Being bullied isn’t great. It what I think a lot of us go through in every country. I get it here. So I felt that sting. Not happy with the reg mom throwing her reg voice at my special not so reg life. It’s a great life though and I think others would say the same. We have dreams too and so do our kids. We want to see them thrive too. We have laughter and heart ache like everyone. I know everyone want the heart ache to look more fun. Not look like work or cost a penny. Sorry can’t pritty it up, neither can you. That’s why your blog is what it is. It’s real. Oh I’ve read your blog many of times it’s not all gripe. Fooey to the candy coating on top. Yeah there Are things that are not perfect but show me perfect eh. Jesus Didn’t come back yet so perfect ain’t here. no kid is perfect and no parent is. You got more going for you and more together than most. Hugs

  2. 1funmum says:

    I am so happy there are people who are leaving you comments of support as well as great suggestions. Sorry that I got mad at the first comment I read. It was harsh to hear such nasty words. So I gave some back. I will try to keep my temper down next time :) maybe… It really is hard to get a mainstream school to help a child that stays on the edge. It’s very hard to get others to realize the dream that parents have for their kids too. What I do love about a lot of you women in the UK is your ability to take a stand and fight. To not remain complacent. We have a lot to be thankful for in Canada but a lot to fight for too. We fight for our health care not to get cut. For more doctors and therapist. For the wait lists to get shorter. For our schools to get the funds they need to support not just our special needs kids but all kids ( cause budgets are so taped special needs gets lost in the shuffle). We most of all fight the aging out process. Where kids start services and age out when they just start making progress. This often hurts not just the families but the doctors and therapist that support them. Often in my country their are women who are complacent. We don’t make enough noise. We don’t question the system cause we are told ” a polite women just first act that way” or you get more flies with honney. I applaud you guys your efforts to break down the barriers and your solidarity. As usual great blog.

    • Aspie in the family says:

      Hi 1funmum – thankyou for commenting again. Please don’t worry about feeling angry about that comment. In a way you helped me to realise that I needed to control my blog better and to filter comments that were rude and unhelpful.

      Returning to the school side of things, I’d like to say thankyou for your comment about British women and our fighting spirit. That is such a lovely thing to say and I know that there will be a lot of women like me out there who will appreciate hearing that. I realise I can only talk for myself here but there is a lot of criticism about parenting over here and its stripping us of our confidence so its great to hear something positive.

      Its also interesting reading your experiences in Canada (always good to hear what’s happening in another country) and I can recognise some of what you say particularly the aging process. One of the things that makes me panic the most is the pressure to get my son to access education while he can but the problem is we don’t think he is ready for learning. The worry is when he is ready to learn will there be provision for him as an older student.

      Anyway, thankyou for your comment and for sharing your views. They are really interesting and have added to a great discussion on here.

      Deb

      • Janet says:

        Deb I also have an older daughter who is 22 with aspergers, (she was 17 when we found out). While she managed school up to 16 the emotional cost wasn’t worth it, it all went terribly wrong when she went into 6th form. It took about 2 years, amove down south and a doctor to get her back on track. She has just completed the 1st year of a foundation art degree (part time) she is positive about the future.
        I have come to realise education is available past the ‘school’ years when school hasn’t worked out.
        I believe with time and you on his side your son can recover. Hope this helps :-)

        • Aspie in the family says:

          Thankyou for sharing your experiences Janet and I’m glad to hear you daughter is doing well. Its good to hear that there are educational opportunities beyond 16 and I’m hoping that one day I can get both my son and daughter to reengage with learning again. Deb x

  3. Janet says:

    Love your blog!
    Totally shocked to read one persons comments still you can’t please all the people all of the time, and some never!
    We were in your situation 2 years ago. We had the backing of both primary and secondary schools to get a statement for our daughter. Our daughter started high school in Sept 2010 and lasted until Dec 2010, she couldn’t cope with all the changes all the pupils (1800) etc The LEA started the statementing process in Apr 2011. After meetings with them over the proposed statement in June 2011 they issued a final statement in Jan 2012. They haven’t listened to us, medical experts or to the schools. We are now waiting to go to tribunal in Sept 2012 over the statement and the school named in section 4. All this time our daughter has been at home, we are lucky that the LEA has a flexi school unit and she has been there but only 2 hours a week.
    I am fed up with the fact my daughter cannot access education in a way she can learn. We have found a school after a lot of research and have to fight for it!
    I do understand that the LEA has a budget however they need to wake up to the fact there are many many children who need a different way of learning and that parents are not going to let them suffer anymore.

    • Aspie in the family says:

      Thankyou Janet. I’m sorry to hear that you have also had a very difficult time getting the right school for your daughter. It never fails to shock me how so many of our children are being treated so badly by the authorities. What angers me even more is when children are out of school and yet only get a few hours of education a week. Similar to your daughter, my daughter is only getting about 3 hours of lessons a week but its not enough and I can’t believe the government and the authorities think this is acceptable. I agree with you; its time the autorities woke up and realised we need a different way of teaching our children that doesn’t cause them to suffer. There is nothing worse, I think, than to see our children ‘crushed’ by the education system; I am not sure my son will ever recover now and it makes me incredibly sad.

      Anyhow, thankyou for commenting and sharing your experiences; it is much appreciated. Deb

  4. Tania says:

    Well done on getting the draft statement! As you say, it’s far from the end of the story. And what a lousy time of year – I know another mum in the same position.
    We ended up moving house to be closer to the school we chose, but as both boys went to the same special school, it was an easy decision (though very expensive one)
    Best of luck with finding the right solution – will be reading to see what happens!

    • Aspie in the family says:

      Thanks Tania. It is a bad time of year to get it because it restricts choice particularly now that she is year 6 and due to move up to secondary (places in specialist units are full). We’ve been thinking of moving to be nearer to a specialist ASD school because deep down I think that is what she would benefit most from. Unfortunately I’ve got my son’s needs to think about and as we’re in turmoil with him too, we just can’t meet both their needs by moving at the moment. Its difficult but I will keep everyone updated. Deb x

  5. Your blog is YOURS to write about YOUR experience. We all have different experiences and there is so much that still needs to be done in this country to raise autism awareness. If no-one raised concerns and did the ‘moaning’ for everyone else then nothing would change and we probably would go back to an age of the asylums that were mentioned. Highlighting areas of poor practice is about recognising that our children can achieve so much more and have a potential that is often untapped in the system currently in place in the UK. Often, here, diagnosis is where the help stops whereas in other countries it seems to be where the help begins. So I’m for us all having our say. The more voices we add to the clamour, the more things will change. The little people really can make a difference if they make themselves heard.

    • Aspie in the family says:

      Hi Rebecca; you are absolutely right. Often help stops when you get a diagnosis (in the UK anyhow) and yet for many of us this is just the start of the journey and a long difficult journey it can be too. So its only fair, I think, that we should feel free to tell our stories on our blogs. If we didn’t how can anyone learn what is going wrong (and right) and how to improve things. Thanks for commenting. Deb x

  6. rosymoo says:

    I applaud your determination to get the best/most suitable education for your daughter. I completely understand where you are coming from, my son is 9 and has Asperger’s and is crazily intelligent (when he wants to be), I too have faced the dilema of which school is best for him. I am very fortunate that the church I attend also run a very small independent school catering from pre-school – Y11 and although I have to pay for my son to attend and it’s ‘mainstream’ I know that it’s the best place for him to be especially after visiting my local junior school and being told that they couldn’t cater for him. From the sounds of it we’re in a similar situation, our children are too high functioning for special education but not ‘normal’ enough for mainstream. I pray that you find the right school for your daughter soon x

    • Aspie in the family says:

      Hello Rosymoo; I think you are right. Our children are in between special school and mainstream education and that leaves a gap I think. There isn’t enough provision for these children but I’m glad you’ve found a school for your son; its sounds great and I hope he does well there. As for us, we’re waiting for an appointment with the local authority so that we can tighten up my daughter’s statement and get some more advice on schooling. I doubt though we’ll be able to sort this out before the end of the school year which is a pity. Deb

  7. Sherri says:

    Wow guessing Fiona don’t live in uk if she thinks it’s a plain sailing.

    You can’t fairy dust life when it’s at it’s low point. your best being honest or how are people going to see what families like ours go though. I think most of your followers will agree when I say “I think your blog is great” I have chosen my sons education very carefully as it plays a important part in his life and don’t care what anyone says he does not know what is best he’s a child I listen to what he wants and go from there.

    • Aspie in the family says:

      Thankyou Sherri, I agree, it doesn’t help anyone if I put a ‘gloss’ on my experiences, people need to know the reality. If we don’t tell people what is happening how can we ever aspire or hope for change. As for education, my daughter does not necessarily know what is best for her schoolwise either. I listen to her of course and take on board her views but in the end I have to pick the school and its not easy. Deb x

  8. Well done on getting the statement Deb. If you can get it amended and if she wants to go the local school and they feel they can meet her needs with the additional support then it must be worth giving it a go. At least then, you and your daughter will know what is working and what isn’t and you can decide then if is worth reviewing and looking at other options with the travel etc. Sometimes it’s so difficult being stuck between a rock and a hard place.
    I know what it’s like when the children want to make one choice and you really aren’t sure if they have all the understanding of the implications to effectively make that choice.
    I also think you gave a fantastic response to the earlier comment. We are very lucky to live in the UK compared with some other places, and part of the privilage we have is that we are free to express our views about systems and services that could be better.
    I really hope you resolve the school situation and that you are able to make some plans for your daughter. xx

    • Aspie in the family says:

      Thanks for commenting Violet. That is what we’re erring towards. We’re thinking of amending the statement to maximum TA support (if we can) and then try her local mainstream. My only worry is that because she is already in a poor state (out of school and with little confidence) I am worried that if we get the school wrong, she will feel worse and drop out of school again. I’m also not convinced that she truly wants to go either and is only choosing the school because she knows it from her eldest sister. Hence the dilemma. Deb

  9. It always confuses me why people read a blog that infuriates them. Surely it’s pointless to keep coming back…

    Anyway, now to my comment. All our cases are different because councils in the UK offer, or don’t in a lot of cases, varied SEN provisions. I feel very fortunate that where I live we have a very efficient service and my daughter was transferred to special school without any problems. I say this statement is a cause for celebration because now you have in writing what is needed to make life that little bit easier for your daughter. It is always going to be difficult because life for our autistic children always will be. But as their advocate, we have to keep pushing with all our strength to get them everything they will need for future years.

    Hope you manage to sort the school out.
    CJ x

    • Aspie in the family says:

      Hi CJ, I think its a case that it will be a cause for celebration once we have it finalised and a school place sorted but for now its a bit of a shock. I know having a statement is the best thing for her but for now I have to come to terms with the content of the document as it includes the results of the psychologists assessment which we hadn’t read until now. Deb x

  10. 1funmum says:

    First I want to thank you for posting this blog. I don’t blog about my journey through but have found it great to read blogs about other mothers journeys in motherhood. For years I only had friends with typical children. I found it hard cause they could not relate. Often giving advice that applied to NT children. There are tons of parenting mags, web sites, and yes mommy blogers that are from the NT mommy parenting the NT child. It’s hard cause my child is different. So I need blogs like yours it helps me to feel not alone in the world.
    I have to say your blog today struck a sore spot with me. Having a child who I guess is high functioning is hard. But having a child that I guess is considered low functioning is hard too. I have both. I say considered because I feel that cause education is presented from the NT perspective and by the NT guide lines then I guess my child can have a low or high function. What has me sore is you are right there is little respect or education for the child who can meet most of the NT requirements but still falls short. We live in different countries and I feel the same is here. We do loads for the child who has high needs or more behavours. We let the child who has less needs struggle. I’ve been trying to keep my kid in a regular class seat since grade 1 and it’s hard. He is often over taxed and frustrated. Can’t get schools to understand cause we have been good at keeping his grades up and he works so hard. I know if he was approached with more special education he would find it better and score better too but cause he’s never failing and is well behaved he gets unseen.
    I now have to say something to the person who wrote the last response. I live in Canada and I am very proud to be a Canadian more than ever. Because your system for special needs is not by half as good as what we have or the US. If you really do have a child with special needs then you should bite your tung over what you said about locking kids up in an asylum. That is a trashy thing to say. I have never Hurd such a backward thought coming out of a special needs mom in my life. Over here we get more respite then you have more organizations then you and we are more understanding than you. I can say that cause you just proved it by that ignorant statement you just said. If you guys had more you wouldn’t see a momma worried at all. If you had a lot more awareness you couldn’t even write that opinion with out choking on it. I suggest you get some sensitivity training and some specific education on ASD

    • Aspie in the family says:

      Thanks for your comment 1funmum. This is very similar to my daughter. She was passive in class and appeared to manage academically but underneath it was causing her more and more distress. It got to the point that she “gave up” (her words) and dropped out of school. Her confidence and self esteem was in tatters and I am starting to think she had a bout of depression as she was in a very low mood and would spend much of her day in bed. We were assigned a home tutor twice a week and very slowly she is starting to feel better but really it shouldn’t have got to this. No child should get ill because of lack of support in the classroom. Now we have the support of an educational psychologist who has done a brilliant job of identifying her difficulties and written a report suggesting the help she needs. We now have to find the right school for her which is difficult because of the lack of provision in the UK but we will do our very best for her. Deb

  11. Sally says:

    I really feel for and identify with what you are going through. Getting the education part of the puzzle to fit is challenging, particularly for children who do not have basic educational needs.
    There are of course always those worse off, but that should not be a barrier to working towards improvements in accessing care and education for those who need it and who cannot represent themselves.
    I hope you manage to find the right school for your daughter, or at the very least, the best that is available.

    • Aspie in the family says:

      Thanks Sally. You raise a valid point about not using other peoples experiences as a barrier to improving the life chances of others. I’m afraid I meet a number of people who really believe that children in the UK have it all. On the surface it may seem that way but the reality is very different, as you know. Thanks for commenting. Deb x

  12. Fiona says:

    Why dont you ask your daughter where she wants to go…it isn’t really your decision to make for her. Just because she suffers from asd or asc as some people call it does not mean she cannot make decisions for herself. You blog often infuriates me as all you do is slag off the NHS you should be happy you live in.a country that recognises complex mental health problems and doesn’t throw kids is asylums and treat the parents like outcasts. Be happy with why you have and stop complaining all the time its getting tiresome. Yes I do have children with aspergers and autism on diagnosed one not.

    • Aspie in the family says:

      I did ask my daughter where she wanted to go and she wanted an ordinary mainstream school; hence my meeting with the school. As her parent it is my duty to make sure my daughter is in the right sort of education and one that doesn’t cause her even more problems. Sometimes my daughter chooses things out of familiarity; this doesn’t meant it is right for her!

      I’m not sure where you are commenting from but if you are familiar with UK schools then you should understand that the education system in the UK is not inclusive enough of children wth special needs or disabilities. Many are missing out on their basic right to an education, a right that is stipulated by human rights laws. This is one of the reasons why the UK is in the process of special educational needs reform; to try and improve the outcomes for children like mine.

      I’m sorry you find my blog tiresome but what I write about is based on my real life experiences that many other families identify with. I may live in an advanced country and I may be fortunate to have an NHS but the services for those with autism and aspergers are not developed enough. As a result, children like mine are not getting proper access to education or even health care due to the widespread lack of understanding of ASD.

      I am not going to apologise for writing about this or raising awareness of how children like mine are being treated. This isn’t to say I don’t care about children in poorer or undeveloped countries, I do but I also care about children in the advanced countries like the UK. And if we can’t get it right in the UK, then how can we help those in the developing countries.

    • Galina V says:

      If you find this blog tiresome and infuriating, the easiest solution would be to stop reading it. Then you could go and visit some other blogs that make you happy and entertained. I’m genuinely puzzled as why do you keep coming here, if you don’t like it so much, it’s not like anyone forces you to do it. Unlike you, I sympathize with Deb’s writing, agree with her and find her blog inspirational and helpful. We could all stay complacent and go along with the tidbits that the state provides for children with special needs. You might find it a better place, but the country which spends billions on a Jubilee and is cutting the budget for the disabled cannot be called civilised.

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