More stress and poor reports

[curra1]

M has continued to have most of his lessons in the ASD unit but his stress is worse than ever. Staff keep telling him that he has to be reasonable and face reality (and therefore go to mainstream), on the other hand he hasn't been doing very good work because he says that he has to be alone with a boy who constantly torments him, takes his things and hides them, calls him names and laughs at him because he's afraid of his peers. He says he can't concentrate or work quietly because he's always distracted by this lad who is also not a good worker . Yesterday M got a very disappointing report and as usual, he got all the responsibility for his poor results because that's how schools always see it (but M sees it as blame), so he reacted to words such as "work harder", "more effort is needed", "complete your work" and so forth with anger and hurt. He wants to do his GCSEs and get good marks . When he saw the low targets set in his report it was for him a proof of his failure. At home I tried to talk about it with him but it just led to him screaming. covering his ears and sayng things like "nobody understands, I can't take it any more." Later he said that if he didn't get good marks in his GCSEs he would kill himself , he also said many other things but it would make this post too long to write them all. He knows that he would improve his work if he went to mainstream classes but he says that he just can't because he is terrified. He's at the point of breaking down again. So what do I do now, the school won't or can't give him the type of support that he needs which in my view is because in the unit they emphasize the social integration too much and don't support enough his academic learning, apart from the constant nagging about going to mainstream class. M says the he is all day thinking about how to hide and protect himself from people who can harm him (peers mainly) which is something that really worries me as it looks like a mental health problem that has been totally overlooked by the school (although I have told them about it many times). Has anyone gone though something similar? Is home tuition the only option left? I welcome all your thoughts about this, I really need help !

 

Curra

[Clare63]

Hi Curra,

 

Firstly, I have not seen you around for a while and missed your posts, been wondering how you are. <'> <'> <'>

 

It seems to me that the school really do not understand, fancy telling him to be reasonable and to face reality, what an earth is that supposed to mean to a person let alone a child with ASD. Your poor lad is carrying so much fear and confusion on his shoulders and clearly has difficulties in making sense of the world around him, its not surprising that his school work is suffering, as I always say like trying to squash a square peg in a round hole. The teenage years are certianly the most difficult and we noticed the gap widening greatly between our child and his peers, also I have found that my son has a low self esteem and litle if any confidence any comment of a need for improvement in his school work just makes things a 100 times worse, and so many times I tried to explain that he works better with praise, as a very negative child any negativity only make him worse, two negative therefore make a double negative.

 

I do too wonder if Home Ed is the only answer, more and more the system seems to letting our children down, in my view education has been learnt at any age but damage to a self esteem can last a life time.

 

My lad is currently signed off sick from school with stress and anxiety until further notice, we have no statement and the school feels he "should" be able to cope !!!! my parental request for a statement has now gone in and I await the response, but in my heart of hearts I know I would be failing him if I sent him back to mainstream where he is fearful of his peers and is in discomfort by the environment.

 

I am afraid Curra I don't have any answers for you, but can empathise with your situation. Sorry if I have waffled on but I am very passionate about the lack of true understanding of children and the school expectations of them.

 

<'> <'> <'>

 

Clare x x x

[Cat]

The reality is that your son has a disability and it appears that it is the school who needs to wake up to this fact and not your son. I would be very if I were you. Where are the reasonable adjustments that the law says that they, and not your son, must be making?

 

Just after my two were diagnosed I heard Rita Jordan speak at an ASD conference the woman was illuminating and her words have stuck fast in my head for 7 years now. She said that it is always 'we' and not our children who will have to make the adjustments. The reason for this is because it is 'we' and not our children that have the ability to do this.

 

It is sometimes difficult for me to come here and post and I do so far less than I used to. The reason being is that I do home educate and I have seen the difference that this can make to children who are stressed and talking about wanting to kill themselves - believe me I have been there and done that. I sat down with a piece of paper and asked myself what my sons were gaining from attending school. The paper remained empty. I don't post that often here now because I realised that I often come across as someone who has 'seen the light' and that does not go down too well with parents who are busy pulling their hair out by the roots. So what I will say is that I have seen first hand that their is an alternative and that for many children, because there are significant numbers of us now who are home educating, it has worked. We have found out who our children really are and they have found themselves.

 

We live in a life long learning enviornment so we can return to learn at any time in our life. We can never go back and re-gain our childhood. The skills that our children need to enable them to use any qualifications that they may end up with, are just as important as the qualifications themselves, and they are not being taught these skills. Instead we are being told that our children have to learn to face reality. Reality does not have to be a harsh place where no matter how hard you try you can never fit in.

 

We had the autism outreach team in our home a few weeks ago and it was commented on that our youngest does not appear to be as emotionally delayed as other children his age with autism. I already knew that and I already know why. My son is not having to swim against the tide every day of his life. He has been allowed to learn about himself and been given the chance to like himself for who he is and not what school says he should aspire to be. He is not isolated he has friends and attends many clubs and activities. But he is not being told on a daily basis that he is failing as far too many of our children are.

 

If it were me I would think long and hard about the options that are available and I would also ask my son what he wants to do. I ask my son regularly if he would like to go back to school. So far the answer has always been no. Being educated at home does not mean that the child is failing for some it means that they begin to live.

 

Cat

Edited December 9, 2007 by Cat

[curra1]

Hi Clare, A Big thanks for your reply, your support and views mean a lot to me, <'> <'> especially at this moment because I know I have to act and soon in order to help my DS. I am under a lot of pressure because I have to juggle this situation the best I can and I'm not very good at it. These are the times when I wish there was a dad also around ...

I have been away for a while because of poor health (heart problems but not too serious) and in order to avoid my own stress I've been having my head stuck in the sand for some time which has also meant not using internet too often. I am so sorry that your lad is signed off sick from school with stress. His school's reaction is typical and it sounds so like my son's old school before he had a statement. I kept my DS at home whenever he was stressed (and I still do) and presented my letters to the school as evidence to apply for the statement. I hope that the response from the LEA to your application is a positive one! (keeping my fingers crossed) .

When staff tell my son that he has to "face reality" they mean that he has to accept that he has AS and learn to live with it in an NT world. He hates his dx and thinks that others treat him like a "retard" (his words) because he is seen coming out of the ASD unit. Staff have even forced him to go to the big groups and told him about things related to the unit in front of all the others (they said it was to make him overcome his fears!!) . This has made his fears worse because he says that now everyone knows that he has AS. It's no wonder his achievement is going down. But (unfortunatelly) M doesn't want to be home-ed because he wants to be accepted by others and receive more support and understanding at school. Personally, I really doubt that he will get what he expects from the school. The damage to his self esteem has already been made through years of teasing, bullying and lack of understanding in different schools and now his academic future is also at risk.

 

Good luck with the statement!! Let us know when you get a reply.

 

Curra

[curra1]

Hi Cat, Thank you so much for your reply <'> <'> your views are very helpful for me at this difficult moment. I wish I could end the school chapter (and torment) for good, but my Ds wants to stay in the school system, at least that's what he's saying right now. I have the feeling that he wants to stay in the school because he sees leaving as a kind of failure. It may take more convincing on my part to make him understand the benefits of HE. Although I am a teacher (retired) I have never prepared students for the GCSEs since I always worked with older students abroad and I don't feel confident enough to do it. But I really wish I could because I know deep in my heart that it would be the best for my son. Just to imagine him liking himself for who he is makes me want to try it! The adjustments that the school make is an ASD unit where he is allowed to learn because he's too scared of mainstream classes. There he receives more support and he learns either in 1 to 1 or in a very small group. But the school don't want to have him there and they tell him everyday that he will have to leave the unit and go to mainstream class, because it's best for him , he has to face big groups later in life etc etc. He's worn out explaining why he cant (and not being believed) and has wasted too much energy with paranoid thoughts instead of feeling relaxed and learning to his potential. He's also not being taught by tutors as the school say they don't have the resources, so there lies the reason why he's constantly being pushed to go to mainstream. I know other parents have taken the school or the LEA to tribunal. Sadly, I don't think that I would be able to go that far. Sorry to sound so negative and coward

What is my son getting from attending school? A bit of learning and a mental health problem. As to socialising, he has become more isolated and scared of people than he ever was in primary school.

 

 

 

I'm very glad that your son is doing so well in home education! Thank you so much for your thoughts, I'll print them out and keep them.

 

Curra

[Cat]

Hi Curra

 

Thanks for not taking my reply to you as anything other than what it was - from the heart.

 

I do not know if this will be of any help to you re your son but I have heard on numerous occasions now that some children who are in danger of being totally burnt out by school are still very reluctant to leave. The reason being that this would involve a change in their routine and any change is difficult for children with ASD. So it may not be the school that your son is relcutant to leave but the security of the routine, even though it is making him ill.

 

If you did want to explore the idea in more detail you would get some excellent support and advice if you joined this list http://www.he-special.org.uk/ You do not have to be a home edder to join but you have to be exploring the possibility.

 

hope things get better for the both of you.

 

Cat

[Bard]

We live in a life long learning enviornment so we can return to learn at any time in our life. We can never go back and re-gain our childhood. The skills that our children need to enable them to use any qualifications that they may end up with, are just as important as the qualifications themselves, and they are not being taught these skills. Instead we are being told that our children have to learn to face reality. Reality does not have to be a harsh place where no matter how hard you try you can never fit in.

 

We had the autism outreach team in our home a few weeks ago and it was commented on that our youngest does not appear to be as emotionally delayed as other children his age with autism. I already knew that and I already know why. My son is not having to swim against the tide every day of his life. He has been allowed to learn about himself and been given the chance to like himself for who he is and not what school says he should aspire to be. He is not isolated he has friends and attends many clubs and activities. But he is not being told on a daily basis that he is failing as far too many of our children are.

 

If it were me I would think long and hard about the options that are available and I would also ask my son what he wants to do. I ask my son regularly if he would like to go back to school. So far the answer has always been no. Being educated at home does not mean that the child is failing for some it means that they begin to live.

 

Cat

 

Cat, what a wonderful post. I'm a mainstream teacher, B is in mainstream and doing well, but I wholeheartedly agree with your points.

Mainstream is sometimes a dreadful place for ASD children, with both school and peers often driving them to the edge of their control. B's school is good, adaptable and flexible. His problems have been with peers, but school is working with us to resolve problems in a very proactive manner.

To see that education is lifelong, that we learn best when we are ready for a particular challenge, that just because a group of children are the same age gives little clue as to which ones are ready to address a particular learning issue, is to understand the point of what true education should be.

Unhappy, distressed children learn little when kept in the environment that is creating the stress. And it isn't them who need to change.

So keep posting, homeschooling is right for many, as is mainstream. The reason that B's school is aware and informed is because of the number of ASDs that they have dealt with over the past few years, and their willingness to accept that for teachers and school organisations, learning is lifelong. So they are open to the idea that teachers need to be learners too. Strategies and methods that they have developed for B may help another child further down the line, and B is very happy in school, in lessons. And we're working on the wider school environment, including other children.

Edited December 9, 2007 by Bard

[Clare63]

Oh Cat, you explain things so well, this was sort of what I was trying say. I do so value your opinions, wisdom and experience as am always so pleased when I see you have posted on here, I am at least one person who really appreciates you popping back on the forum from time to time.

 

Curra, so sorry to hear about your poor health I hope you are recovering well and feeling better both physically and emotionally. I hope by chatting on here you find some ideas to help solve your sons difficulties, there are so many if's and but's and its sooo very hard trying to work out the "right" thing to do. I am so glad you are back online and I will support you in anyway I can.

 

<'> <'> <'>

 

Clare x x x

[Guest Lya of the Nox]

oh cat thank you for this statement

 

I do not know if this will be of any help to you re your son but I have heard on numerous occasions now that some children who are in danger of being totally burnt out by school are still very reluctant to leave. The reason being that this would involve a change in their routine and any change is difficult for children with ASD. So it may not be the school that your son is relcutant to leave but the security of the routine, even though it is making him ill.

 

it looks likely that mine will be moving education, but we keep hearing i cant go to another school, but she cant go to school ifykwim

 

it seems at the mo that soo many around the 12-14 age group are struggling soo much, and not one professional educator will take it as it sis really happening

 

no offence to those who teach, i really dont mean you!

 

i would home ed, but not sure my sanity would remain intact

, i think you are great to do so

x

[Cat]

Guys I was not posting for compliments really I was not. I know that often my opinions can come across very forcibly ? I know myself really well. The more I advocate for parents the more I see what needs changing and where the fundamental problems are occurring. The biggest problem by far is attitudes and the fact that there are still far too many schools demanding that it is the autistic children who fit into their system of education. This does not fit with what the government is saying and the schools need to be booted into touch here. The government says that the education should wrap around the child not the child around the education. The government says we need personalised education. If this were happening we would not have the issues that we have.

 

We changed our whole lifestyle to home ed and while I do not regret this for one moment I do not think we should have to go to these lengths to secure the emotional stability of our children.

 

I spoke at a regional conference on Thursday to a mixture of parents and professionals (my first as guest speaker) I started off thinking that I was preaching to the already converted where the parents were concerned, and that the professionals would either tune out or sit thinking ?who is she ? who is she? I was completely taken aback when a SENCO asked me if I thought that social skills should be written into statements to ensure that children with ASD are actually taught the skills they will require to see them fit into a mainstream world. Of course things like social skills should be written into statements because social impairment is a BIG part of the triad and part of the disability and yet it is so underplayed. Statements tend to only cover the academic things leaving parents fighting for things like speech and language and OT. Yes social skills should be in there.

 

After the conference there were more professionals than parents who sought hubby and I out asking questions. If only we could get the professionals to attend these conferences where they hear and see what it is really like for our children. Maybe then we would manage to effect change.

 

It all comes back to change and how difficult that is for our children and how essential it is for the system to adapt to them and not they to the system.

 

There are two stages when our children appear to hit the wall running. Year 5 is one of those stages and if they manage to pass that marker then the next brick wall runs through year 8 and 9. If we know where the walls are then we need to start looking at ways to climb over them and not hit them.

 

Cat

Edited December 9, 2007 by Cat

[Bard]

Guys I was not posting for compliments really I was not. I know that often my opinions can come across very forcibly ?

 

After the conference there were more professionals than parents who sought hubby and I out asking questions. If only we could get the professionals to attend these conferences where they hear and see what it is really like for our children. Maybe then we would manage to effect change.

 

It all comes back to change and how difficult that is for our children and how essential it is for the system to adapt to them and not they to the system.

 

Cat

 

If you had been posting for compliments, you would come across as arrogant and self-centred, which you most definitely are not. People tend to compliment what they admire, and speaking with passion and eloquence on a subject close to us will get you that sort of response.

Those professionals whom you made listen instead of tuning out will hopefully begin to see what sort of changes need to be made within their own small areas of education, and the more we convince, the further it will spread.

I've got a foot in both camps, the changes I make are small but worth it. I can also make other professionals and parents and children aware of what is possible, and what might be possible.

Keep it up!

[bid]

Can I just say that my DS was driven to a breakdown by mainstream education.

 

For him, a specialist AS school worked it's miracle and transformed his life.

 

So there are 3 alternatives out there: mainstream, HE and AS-specialist schools.

 

Bid

Edited December 9, 2007 by bid

[oxgirl]

Curra, so sorry to hear that you're both still suffering like this. <'> <'>

 

If it's any help, I remember well that when we were preparing to take Jay out of school and home ed, he was very scared and very unsettled and didn't know what to expect or what would happen. It was a case of 'better the devil you know' for him in some ways. It was very scary to remove ourselves from the all the people who are supposed to be there to support us too, but after a few months we were seeing so many benefits that we wished we'd been braver and done it so much earlier rather than putting it off for so long. Making the decision to do it was so much harder than actually doing it, we found.

 

What I did when I was trying to decide whether I could face taking him out or not, was I took him to visit the local Education Otherwise group for a day, just to see what it was like and to put our faces out there. There was so much going on there and, even though Jay didn't interract with any of the children, it was just nice to see so many children of different ages enjoying the different activities and it gave me an idea of what it could be like for us if we did it. When we were home edding it also meant that Jay had so much more energy to do other things. We enrolled him in a dance class and did a dyspraxia social group on a Saturday morning, we went swimming and went on trips. We can't do any of those things now because all his mental energy is taken up with the stress of school.

 

Why do we keep him there??!! We question it all the time. It's not an easy decision but weighing up the good and the bad aspects can sometimes help.

 

All the best. <'>

 

~ Mel ~

[Cat]

In my area specialist placements are only available to children who have statements. Many of us never manage to obtain a statement so that rules that option out.

 

Cat

[bid]

In my area specialist placements are only available to children who have statements. Many of us never manage to obtain a statement so that rules that option out.

 

Cat

 

Sadly that's very true

 

Bid

Edited December 9, 2007 by bid

[Kathryn]

Like Bid's son, my daughter also had a breakdown because of the stress of mainstream. Perhaps we should have taken her out, but the decline was a gradual one, not always obvious, and for a long time there were just enough positive things going on in school which masked all the bad stuff.

 

By the time her depression and the cause became obvious, she was in year 10 and I was encouraging her: "one more year. You only have to get through one more year". It would never have crossed my mind to take her out of school in the middle of her GCSE's .

 

I really admire anyone who can home educate successfully - it's obviously a great option if it works. I don't think I could ever do it though. I need lots of personal space and get very depressed if I don't get it. I don't even cope with the summer holidays too well - I love both my children dearly but couldn't cope with them being around all day every day. I'm a better parent when I have some "me" time. The 18 months that L was at home were pretty stressful and I was so glad to have the chance to work part time.

 

I know nobody who home educates is claiming to be Superwoman - I just wanted to make the point that it's not for everyone, and it's OK to have negative feelings about it - it doesn't mean you're a bad parent.

 

K x

[curra1]

Thanks Everyone for your wonderful posts!! <'> <'> I am struck by the number of parents who feel they've had no other choice than to home- ed their kids. I've been thinking these last 2 days very hard on your views and experiences , which are very similar to mine and I think that HE would be the best way for M to learn for his GCSEs. But he's reluctant to receive HE because he tends to see every change in his life as a personal failure and he thinks that with the right support at school he will get better marks and make friends, so he wants me to continue the fight against the school and the LEA. He dreads going to a special school, so I 'm leaving that option out. M is very isolated but that's not his choice since he would like to have friends but he doesn't know how to make them. He has only me as family so the idea of not having other contacts scares him. I can understand that since he doesn't like going to social groups or doing activities for young people. HE would mean for him that he 'd always be at home with his mum. Not his ideal solution

 

I am very disappointed in the way the school system has so far treated my son. M is on the very high functioning end of the autistic spectrum, and like many of your children too, he's a good student who because of his AS is at a disadvantage compared with NT students . He has never been really understood by the school system, and the way he has been treated by teachers and peers has been having a bad impact on his mental health. He has never made a friend even though he's polite, witty and gentle. Other children don't invite him because he doesn't participate in sports or activities that they like, he doesn't share many interests with them either, all M cares about is academic stuff that puts other kids off. Schools through the years have done nothing to help him, on the contrary they have made him feel incompetent because he doesn't join sport groups, and teachers whom I asked for extracurricular art or music activities just looked at me as if I came from another planet. I know from other parents that M is not liked by his peers because of his different interests and they consider him an "excentric". I am not very convinced anymore of the school's inclusion and social skills strategies that in practice mean he has to be "strong" and accept being teased and left alone by his peers which in the end is just more stress and unhappiness added on to his young shoulders . But he wants to keep trying, so I guess I'll have to keep explaining to the school what they already know but don't want to admit, that my son needs to be taught alone or in very small groups, must not be forced to integrate, and should be helped to work to his full potential.

I know that he should be educated at home, but he wants to stay in the school because he has a strong desire to belong . There's also the financial side of it (and perhaps this is the first thing I need to take into consideration) which means that I can't afford to educate him without the LEA's financial help.

 

I've heard about "flexi-schooling" , could this be a way forward.??

 

 

As to health I'm fine, thank you Clare. Nowadays there are pills for everything and I'm taking lots of them to make me feel good and live longer !

<'> <'> <'> <'> <'>

 

Curra

[Clare63]

Awww belss you Curra, as I said before, so good to see you back on the forum.

What you have written above about your son could have been written about my son, it breaks your heart does'nt and its not as if we are asking for much from our schools.

Good luck with what ever you decide to do for the best...

<'> <'> <'>

Clare x x x

[Karen A]

Hi Curra 1.I have been reading through your posts.It struck me very much that it is really important that you have listened to what your DS has said...that he wants to stay in school.I think it is very important that you have taken his views into account.Please don't feel that you ''should'' be educating him at home...and feel bad about not doing it...if it is not what he wants. <'> <'>

Also there is nothing at all wrong with being practical and realistic and recognising that financialy you cannot afford to educate DS without the LEA's financial help.Karen.

[Cat]

This is so very sad. Here is a young man who truly wants to do well in his academic studies and a system that is not even breaking into a sweat to support his desire.

 

If it is your sons choice that he wants to stay in school I would go 12 rounds with them wearing my hard hat. Is there no one in your LA or a support group who could go along with the bucket and towel while you take this lot on?

 

Flexi school is a definite option as long as the school and LA will play ball and maybe in this instance they will. I would certainly go and ask about this as an option. If they start putting obsticles in your way I would contact someone like IPSEA or ACE or even NAS and I am tempted to say the local rag because what they are doing to your son is cruel.

 

My gut it telling me that you should rattle cages in your LA and hang this peg on Every Child Matters. Your son wants to 'Enjoy and Achieve' and they are not allowing him to do this. He wants to 'Make a Positive Contribution' again they will not facilitate his needs to allow this to happen. The stress that this issues is causing your son is impacting on his health so they are also stopping him from 'Being Health' emotional wellbeing is a part of this and feeling ill because of the situation is stopping him from 'Feeling Safe' in school. AND if they played ball and your son could take his GCSEs and then go on to college and Uni he could then 'Achieve and Economic Wellbeing'

 

I am being very serious with the above the school are stopping your child from achieving the 5 aims of Every Child Matters and these AIMs underpin everything that the government wants every school across the UK to achieve. So maybe if you attack this from a different angle and threaten them with the press they will wake up and smell the coffee here.

 

Special School is not an option here because this would also impact on his emotional wellbeing and his feeling of safety. So by changing schools at this point in his school life they again would not be allowing a child to reach their full potential. I hope that some of this is making sense?

 

Cat

Edited December 10, 2007 by Cat

[Karen A]

Hi All.

I think that IPSEA, ACE,NAS and Parent Partnership may all be able to provide some support here as they are recognised established organisations.

I feel very strongly that before any individual thinks about contacting the press many serious issues should be considered.

Local newspapers are produced in order to make money.They do not always have the interests or well being of those that they write about at heart.

Where an individual is a teenager and is aware of the publicity it may not be in their best interest to have personal information in the media.

What is more threatening the LEA with the press could well make them more defensive rather than helping the situation.

I know from personal experience that it can be very difficult to try to walk a line between putting enough pressure on the school to get things done...and being so forceful that all that is achieved is entrenched hostility.

However one extremely important fact to take into account is whether an individual wants to remain at the school concerned and whether there are alternatives.Karen.

[Cat]

You could tell the LA that you are going to your MP ( I would ) because that is what they are there for and unlike the press will not be looking for a good story.

 

Cat

[curra1]

Thanks, Guys <'> Several months ago I contacted my MP and I got no reply from him so that's one political party I will never vote for. Cat, I wish I had your courage but just the thought of going public scares me and I don't think that I could cope with the stress of it. I have received lots of advice from the NAS, they are very helpful and give excellent information, and I wouldn't hesitate to contact IPSEA if I find myself with my back against the wall. Right now I have a CAF meeting before Xmas where I will talk about these problems and ask for solutions to be implemented asap. Thanks for posting the Every Child Matters aims, very useful!

 

 

Curra xxx

[Karen A]

Thanks, Guys <'> Several months ago I contacted my MP and I got no reply from him so that's one political party I will never vote for. Cat, I wish I had your courage but just the thought of going public scares me and I don't think that I could cope with the stress of it. I have received lots of advice from the NAS, they are very helpful and give excellent information, and I wouldn't hesitate to contact IPSEA if I find myself with my back against the wall. Right now I have a CAF meeting before Xmas where I will talk about these problems and ask for solutions to be implemented asap. Thanks for posting the Every Child Matters aims, very useful!

Curra xxx

 

 

Hi.I have ended up catching you on two threads today. : <'>

Is the meeting a Common Assessment Framework meeting ?

If it is it would be worth trying to see if the psychiatrist or a Camhs representative could attend.

[curra1]

Hi.I have ended up catching you on two threads today. : <'>

Is the meeting a Common Assessment Framework meeting ?

If it is it would be worth trying to see if the psychiatrist or a Camhs representative could attend.

 

Yes, Karen, it's the follow-up of the first CAF meeting, with a LEA officer and a Camhs consultant but this time they have all excused themselves and will not attend!! It's going to be just the Senco and me !!! Is this OK??

 

Curra

[Cat]

The thing is that this needs sorting quickly they can not drag this out. I know what you feel about your MP but if after the meeting you are still unhappy then I would go a knocking again. Often the best people to contact is the MPs PA they usually know how many beans make five and a couple of call can often open doors and smooth ways. It does not have to be all guns blazing.They all have to have a day when there are around for their people as it were.

 

I so hope this gets sorted for your son and that he manages to take his GCSEs I would mention flexi school it might be the one solution that could work here very very good luck to you please let us know how it goes <'>

 

Cat

[Karen A]

Yes, Karen, it's the follow-up of the first CAF meeting, with a LEA officer and a Camhs consultant but this time they have all excused themselves and will not attend!! It's going to be just the Senco and me !!! Is this OK??

 

Curra

 

Who was named as the lead professional at the CAF meeting and are you happy with the arrangements for the next meeting ?

If the professionals who have influence have excused themselves and you do not feel that the SENCO will listen to your concerns then the main issue would be how much progress you will make by meeting.Karen.

[curra1]

I had the meeting, it wasn't too bad, the Senco listened to my concerns and she also regretted that the other people had excused themselves so she will plan another meeting for January. One thing came clear out of it: the school is not to keep telling my DS to be "realistic" because that is exactly what he can't be and putting pressure on him makes it worse and it produces a barrier to his learning . She accepted it. I'm not completely happy with the way other things are though, but M's statement review is coming soon so I'm looking forward to it as ti could be a better opportunity to improve his situation at school.

M is looking more relaxed and that's the main thing!

 

Curra xxx

[Karen A]

<'> I am glad things are a bit better.It would be worth chasing all of the professionals involved to see if they can make the review a priority.If anyone is supportive and unable to attend then ask if they can submit some comments in writing.Karen.

[Canopus]

The reality is that your son has a disability and it appears that it is the school who needs to wake up to this fact and not your son. I would be very if I were you. Where are the reasonable adjustments that the law says that they, and not your son, must be making?

 

Just after my two were diagnosed I heard Rita Jordan speak at an ASD conference the woman was illuminating and her words have stuck fast in my head for 7 years now. She said that it is always 'we' and not our children who will have to make the adjustments. The reason for this is because it is 'we' and not our children that have the ability to do this.

 

It is sometimes difficult for me to come here and post and I do so far less than I used to. The reason being is that I do home educate and I have seen the difference that this can make to children who are stressed and talking about wanting to kill themselves - believe me I have been there and done that. I sat down with a piece of paper and asked myself what my sons were gaining from attending school. The paper remained empty. I don't post that often here now because I realised that I often come across as someone who has 'seen the light' and that does not go down too well with parents who are busy pulling their hair out by the roots. So what I will say is that I have seen first hand that their is an alternative and that for many children, because there are significant numbers of us now who are home educating, it has worked. We have found out who our children really are and they have found themselves.

 

We live in a life long learning enviornment so we can return to learn at any time in our life. We can never go back and re-gain our childhood. The skills that our children need to enable them to use any qualifications that they may end up with, are just as important as the qualifications themselves, and they are not being taught these skills. Instead we are being told that our children have to learn to face reality. Reality does not have to be a harsh place where no matter how hard you try you can never fit in.

 

We had the autism outreach team in our home a few weeks ago and it was commented on that our youngest does not appear to be as emotionally delayed as other children his age with autism. I already knew that and I already know why. My son is not having to swim against the tide every day of his life. He has been allowed to learn about himself and been given the chance to like himself for who he is and not what school says he should aspire to be. He is not isolated he has friends and attends many clubs and activities. But he is not being told on a daily basis that he is failing as far too many of our children are.

 

If it were me I would think long and hard about the options that are available and I would also ask my son what he wants to do. I ask my son regularly if he would like to go back to school. So far the answer has always been no. Being educated at home does not mean that the child is failing for some it means that they begin to live.

 

Cat

 

What an absolutely fantastic article. I like the bit about living in a life long learning environment. If only more parents would realise this rather than assuming their kid only gets one chance of getting an education whilst at school. The bit about being able to use skills and qualifications rather than just getting GCSE certificates is also very important. Schools nowadays function more as machines to pass exams rather than prepare kids for life as an adult. Universities are just the same. This face reality argument probably originates from people who have had a hard time in the past and expect others to have to go through the same miserable ordeal.

 

I spoke at a regional conference on Thursday to a mixture of parents and professionals (my first as guest speaker) I started off thinking that I was preaching to the already converted where the parents were concerned, and that the professionals would either tune out or sit thinking ?who is she ? who is she? I was completely taken aback when a SENCO asked me if I thought that social skills should be written into statements to ensure that children with ASD are actually taught the skills they will require to see them fit into a mainstream world. Of course things like social skills should be written into statements because social impairment is a BIG part of the triad and part of the disability and yet it is so underplayed. Statements tend to only cover the academic things leaving parents fighting for things like speech and language and OT. Yes social skills should be in there.

 

Most of what was written in my statement from 1989 was about social skills rather than academic strategies. However, the wrong solutions for my problems were selected that ended up doing me no favours and the effects are still with me today. At the time I thought my academic side of things was being neglected whilst my EP wanted to reform me socially into a conventional teenager. It is of utmost importance that the right social skills are selected with an emphasis on things that matter in adult life rather than childhood, although the reverse is tempting to many parents.

[Cat]

Thank you Canapous for your kind words.

 

Most of what was written in my statement from 1989 was about social skills rather than academic strategies. However, the wrong solutions for my problems were selected that ended up doing me no favours and the effects are still with me today.

 

My middle son who is now 20 and he would agree that the way in which he was handled in school impacts on his life to this day. This worries me a great deal because I can see many of those who are now children carrying the scars of their education for many years if not for life. This is very sad and it should not be like this.

 

It is of utmost importance that the right social skills are selected with an emphasis on things that matter in adult life rather than childhood, although the reverse is tempting to many parents.

 

I could not agree more with you. Everything that we do with our youngest is now geared to the social skills he is going to need as an adult. When you put things into perspective childhood lasts for such a very short time, while being an adults lasts for many many years.

 

Cat

[baddad]

Just after my two were diagnosed I heard Rita Jordan speak at an ASD conference the woman was illuminating and her words have stuck fast in my head for 7 years now. She said that it is always 'we' and not our children who will have to make the adjustments. The reason for this is because it is 'we' and not our children that have the ability to do this.

 

Hi all/Cat -

 

I do, as usual, agree with much of what you say, but i did want to add another perspective on this particular point...

I agree that we have to make adjustments for our children, but I don't see that as a one-way process and i disagree with the idea that our children don't have the capacity or ability to adjust.

Ultimately, if our children don't learn strategies for adjusting and 'coping' we provide them with nothing more than an artificial reality that disappears when we (or their other networks) disappear - which unless they come up with a cure for death is going to happen.

That's not to say that the 'bridge building' should be done without love, compassion, support, guidence, empathy etc etc, but it does need to be done to whatever degree it can be. Anything less can only be disabling, because it limits the arenas in which the individual is able to function.

One of the first books I read on the subject (as a carer rather than a parent) was Donna William's 'Nobody Nowhere', and like the quote you referenced it has always stayed with me...

 

Most important, I didn't need to be loved to death, but at the same time I'd never recommend violence (which I see as quite different from punishment). My problems thrived on violence, which told me I was safe and no-one could get close to me... I could therefore never recommend it. Nevertheless, if love won't work, try persistant, detatched, non-violent war.

 

Love and kindness, affection and sympathy were my greatest fears. The frustration of trying to live up to other people's unmatchable efforts only confounded my sense of inadequacy and hoplessness. Pity does nothing. Love, despite the fairy-tales, would only be thrown back at you and spat on for good measure. Caring would have been useful had it been chanelled into an informed understanding of how to build a world I could have trusted enough to reach out to. Sometimes people must love you enough to declare war. The jump itself, through the darkness to the other side, was something i had to find the courage and ability to do on my own. As much as one might want to, one cannot save another's spirit. One can only inspire it to fight and save itself. If love can't inspire it, external fear greater than ones inner fear might, but I suggest one tries love first...

 

L&P

 

BD

 

 

 

[Flora]

My own take on it is; take a bit of one, a bit of the other, add some therapeutic intervention to help with the SPECIFIC difficulties, and you've a good chance of being on to a winner.

 

Flora

[Cat]

I do, as usual, agree with much of what you say, but i did want to add another perspective on this particular point...

I agree that we have to make adjustments for our children, but I don't see that as a one-way process and i disagree with the idea that our children don't have the capacity or ability to adjust.

 

I agree with you 100%. My own issue is that there are still far too many schools who fail to understand how difficult it is for our children to meet them half way, and not only that expect them to be the ones making adjustments. They fail to see that they have the ability to adjust but an autistic child will need a huge amount of support to adjust in a way that is not mega stressful for them. I firmly believe that a child that is stressed out is not functioning well and that impacts on its ability to learn. Schools very often put in a strategy that works and because it does work they then remove it. Again to quote Rita Jordan (sorry) if the strategy works then that tells you that it is needed and not that it should then be removed because it has worked. You would not take away a white stick from a blind child after 12 weeks just because they were then able to make their way around the school - so why remove something that allows an autistic child to function well in school?

 

I push my own two sons every day often they do not even see that this is happening, but sometimes they question why they have to do something that they really do not want to do. It is at this point that we will sit down and discuss why it is necessary and find a way through together. This rarely happens in school again they are usually just expected to jump to it. My own way forward is via shared meanings and understanding and they are not always easy to find but we continue to strive for this. I want to empower my sons and enable them to survive in this mainstream world.

 

I do not want to be my sons cushion or barrier between them and the real world. But I do think how you remove the cushion and the barrier is important.

 

Cat

[baddad]

I haven't actually read Rita Jordan - but she keeps saying the wrong things for me, so i think I'll avoid her!

 

Again to quote Rita Jordan (sorry) if the strategy works then that tells you that it is needed and not that it should then be removed because it has worked

 

Again, it's a question (IMO) of degree... if you find a strategy that works then of course it shouldn't be removed without careful consideration/planning, but I think there should be an ongoing agenda to reduce dependency on the strategy if it is compromising other areas of independence...

Taking your blind person's stick as an example - very few blind people use their sticks in environments they know they can negotiate - the stick is a 'building block' that helps them develop the confidence to negotiate and develop that awareness. Undoubtedly, the first few 'stickless' manouvres are challenging, stressful, scary etc - but they are also the key to independence, confidence and all the other positives that come from that...

A strategy is (IMO) something you use to overcome a problem, not a solution to it. If you can use the strategy as a 'bridge' to reach a point where it is no longer needed you have found a solution. You can't arrive at the solution without testing those boundaries and challenging the dependency on the strategy...

 

Totally agree about the way many schools operate, and I've had many run-ins myself (even within a school that has done a reasonable job!) along those lines... It is totally unfair/wrong/unreasonable etc that our children have to play almost exclusively by 'NT' rules... that said, the more Ben can learn to do so, without compromising his own needs to a point that is overly problematic to him, the better off he will be, because those are the rules he will have to live by most of the time. Most of the run-ins I've had have been less concerned with the 'target result' and more with the strategies used to get there, and the priority placed upon them. I hope the world will evolve into a better place that makes things easier for him, but whether it does or doesn't the same basic premise remains - the more things he 'overcomes' now, the easier it is later on.

 

L&P

 

BD

 

Curra - sorry I realise I've wandered a bit from the initial subject matter... can't fix that properly now as off out, but just to say this:

 

All of the distractions in mainstream your son mentions are very reasonable ones... can you qualify his poor results in the mainstream class to the school by highlighting the better results in his unit classroom? If you can offer the school evidence that one environment provides good results while the other has a negative effect any argument they offer is null and void... You're then in a position where you can legitimately ask 'what can be done to make the mainstream environment more appropriate?' and if the answer to that is 'nowt' then the unit has to be the logical answer...

 

 

Best

 

BD

[Canopus]

I hope the world will evolve into a better place that makes things easier for him, but whether it does or doesn't the same basic premise remains - the more things he 'overcomes' now, the easier it is later on.

 

Not strictly true. There are plenty of problematic issues with schools that are not problematic issues to the lives of most adults. The converse is also true. I find it upsetting seeing the number of parents who are stressed out over school issues such as team sports or handwriting that are of very little importance once their kid leaves school.

 

I think it's better to focus on the issues that really matter in the long run.

[Cat]

I always hold on to the fact that autism is a developmental delay. If I am looking at DS3 who is now 10 almost 11 I will ask myself if I would expect a child of say 6 or 7 to do whatever it is I am asking my son to do, (I do this because there are now many professionals, Rita Jordan is not one of them , who feel that you take a third of a child's chronological age and are then left with their emotional age and level of maturity) If the answer is no then I tend not to push the issue with my son. My mantra is now everything comes to she who waits and I have found that it almost always does. Because my son is not constantly under pressure to achieve in whatever area of his life I have found that he now sets his own targets and works hard to meet them.

 

I am astounded daily by what my 10 year old can now do with confidence. A prime example of which took place at 2.30am this morning when he decided that he wanted to speak to a nurse at NHS Direct, and not only understood what was being asked of him but responded with clarity and confidence. He took control of the situation, realised that he knew better than me how he was feeling and held his own.

 

Cat

[Karen A]

Not strictly true. There are plenty of problematic issues with schools that are not problematic issues to the lives of most adults. The converse is also true. I find it upsetting seeing the number of parents who are stressed out over school issues such as team sports or handwriting that are of very little importance once their kid leaves school.

 

I think it's better to focus on the issues that really matter in the long run.

 

I have a different and perhaps broader view.It would surprise me if Ben decided to become a sportsman in a team sport as a career in the future.However I could not imagine him in a job where he will not need to communicate and work as a team member.Surely team sports are about working with others and communication.I think the skills learned...if appropriate support is provided are extremely important.Actually I do get stressed out because I feel Ben has a right to be included and to be supported to be involved.The alternative is that he is excluded from participating.I have seen the impact that exclusion from activities has had on Ben in the past and for Ben that exclusion would have had long lasting implications for his confidence.Karen.