Is mainstream right for him - feel lost.

[CWP]

Hi there

 

I wanted to ask for some advice as I feel completely lost. My son is nearing the end of his first year in primary school. He faked sickness the other night as he didn't want to go to school. It turned out that the children in his class were stealing his snacks in the playground and sharing them out then putting the rubbish back in his pockets. He tried to get to the teacher but they pushed him back and kicked him and so he ran away and was too scared to tell. So I assured him it wouldn't happen again and got him to go to school. He no longer wants to be in the plaground and says he has no friends and anyone who he likes hates him anyway. I knew he played alone but had no idea he felt this way or was being bullied. The school were very quick to deal with it and he has been encouraged to go out into the playground with a buddy in tow from a senior year. Will this give them more reason to tease? It breaks my heart that he is so aware and I am worried for his self esteem. If he feels like this at age 5 what will he be like by 16? Will he end up self harming or worse? I'm so worried and feel like school is not the place for him. He is so clever and loves learning but the social side is definately too beyond him. He used to try hard to fit in but appears to have given up already. I'm crying now! Can anyone advise me whats best. I don't want to take him out if thats not the answer. I don't even know if thats really an option.

 

I'm taking him away for the weekend to our caravan where his only friend is. I'll be back on on Monday and look forward to any advice you can give.

[skye]

Hi,

I am in the exact same situation as you. My DD is 5 and ending her first year at school too. I feel like I could have written that post! The SENCo at my daughter's school keeps telling me that she is not a "special school child", yet they are having a very hard time coping with her needs. My daughter too is really clever and would be great if it weren't for the socialization bit of it. She was having "belly ache" every morning and even hanging her head over the toilet like she was going to vomit to get out of going to school. She just figured out that if she bites and attacks children at school then she will get sent home. They have even cut her hours at school down to very part time. The only provision available in my area are ASD untis in mainstreams schools. There are only 6 placements for the whole of the county and a special school.

Does your son have a statement? If so, there may be some other provisions in your area that may be worth you checking out. The only thing I can really suggest is to contact your local Parent Partnership. They are usually very clued up as to what is available in your area. I think for ALL of our kids that there has to be a better system than what is currently on offer. There are a few special schools for kids with ASD's. I think that there should be more or at least more units where our kids can go when things get too much to handle. I am really sorry I cannot be of any more help but I have been on the phone and computer for months trying to get answers and I am at a loss of what to do myself.

You are in the right place though. The people on this forum are the most clued up about the system and will help out with loads of info for you. I just know it! Good luck <'>

Edited May 29, 2009 by skye

[Sally44]

It is hard when any child is struggling or being bullied in school. But obviously if he has a diagnosis of an autistic spectrum disorder that means he will also have difficulties with the language and communication side as well as the social interaction side. So he won't be able to defend himself verbally or know what he should do or whom he should talk to. He may not be able to explain his emotions. He may not understand he is being teased, or may think he is being teased when he isn't. It can be very complicated for them. I never got any information from my son. It was always through my daughter telling me that someone had said or done soemthing. Or the school would phone me.

As you say he is also self aware. My son is the same. He knows he is different and he has done since he was about the same age as your son.

Although it is good that the school has dealt with this quickly, I am not sure that just an older buddy is going to work because his underlying difficulties (either language or social interaction skills) have not been assessed. Therefore they don't know what he can or cannot do and what he needs support for and what he is okay with.

Can you give us a better idea of how he is doing ie. is he having SALT input. Is his diagnosis Aspergers or ASD. What do you feel his language and social interaction skills are like. Is this school just mainstream. Are there any other children there who are on the spectrum.

Has your son got a Statement. If so do you think it is a true reflection of all his needs and does he receive the amount of support you think he needs in terms of hours, staffing provision and therapies?

What are the schooling options your LEA has. My LEA has mainstream, mixed mainstream and Enhanced Resource, and special school. And these schools will have different entry criteria.

I did eventually move my son from a mainstream only school because although he did have higher than average cognitive ability, he has severe learning difficulties ie. dyslexia and dyscalculia. So he wasn't making any progress academically. If anything he was regressing. There was no other child with an ASD at his school and he was too self aware and it was affecting his self estteem because he believed that something was wrong with him. The school had no experience of expertise in teaching a child with an ASD or addressing any of his other social and sensory difficulties. Fortunately my LEA does have this mixed school environment where there are a high number of SEN children mixed with mainstream children. But I did have to go to tribunal to get a place for him there.

From this forum, it seems that many parents would prefer their child to be in an ASD only type of school because of the difficulties that can arise with mainstream children. But having said that, SEN children can also be cruel, or bully or even be violent with other children.

From your forum it sounds like his academic ability is on the same level as his peers which suggests at least typical intelligence. Does he have any learning difficulties such as Dyslexia?

This is only my personal view. But I would probably go the route of making sure his Statement was as specific as possible to show how much support he needed. That should make the educational environment needed much clearer. For example, if he remains in a mainstream school and needs small group work, a dedicated TA, significant SALT input for language communication and social interaction skills, social skills group, circle of friends, all work differentiated and reinforced with visuals, support and monitoring on the playground and during dinnertime etc etc. Then it starts to cost the LEA extra money because your child needs more than is currently supplied through the schools budget or even through NAS or LEA normal funding. Then your decision is going to be on placement and whether the LEA agrees to that. The LEA always have to listen to parents (but they don't always!), but they will go for the nearest suitable school that is the most efficient use of their resources. And they will use that reasoning if you go to tribunal.

So there are many routes you can take. Get a Statement (if you don't have one and you think one is needed), tighten up the statement if you already have one by getting further assessments and written advice (if your son is having any difficulties at school they should get outside professionals to come in and advise and assess and make recommendations ie. EP or SALT). If you then feel you wish your son to remain mainstream, then phone around and ask each school how many children they have with an ASD. From my time spend at parent support groups, I know that parents talk and try to move their children into the same schools. So there maybe one or even two mainstream schools in your area that have more children with an ASD, and therefore you would expect them to have more experience and expertise. You can visit all of the schools. If your LEA has a mixed mainstream/SEN school specific to ASDs that would also be worth visiting. Also see what the entry criteria is for any special schools. In my area it is usually children who are more severely autistic and who also have a lower than average IQ.

But visit them all to get a good idea and feeling for each one. I found it similar to trying on clothes. There was one school that was just right and we were lucky to finally get him in there.

The other thing to consider is what secondary schools the primary schools are feeding into. All special schools or children with SEN places in special schools tend to automatically feed into SEN places at secondary school. That was another reason I moved my son and got him an Enhanced Resource placement because without it I think he would have found it hard to get an SEN placement at secondary age - which is usually the time when it actually becomes harder for them to cope.

I'm sure lots of others will post with their own advice. These are not easy decisions. When I moved my son I had to separate him from his sibling and all the neighbourhood kids. But I felt that if I didn't do it now that it would be harder further down the line and that he needed more input from professionals to even consider the idea of being mainstream at secondary age.

You might also find it helpful to explain to your son about his diagnosis. The NAS has some booklets and sometimes does seminars about these topics. I have found it very helpful to explain to my son in what ways he is different. What he is good at and why, and what he struggles at and why. It was also good to talk about it with his older sister as well, because siblings can often be expected to understand and cope with their siblings diagnosis and that is not always the case. Siblings can also be bullied because they have an SEN brother or sister.

Have a good weekend. Think through all your options.

[Karen A]

http://www.ace-ed.org.uk/advice-about-educ...ng-bullying.htm

 

Hi.The link above provides some excellent information about bullying and what you could do about it.

I think it is worth writing an account as described in the information.Also it may well be worth documenting your concerns in a letter to the school.

Your son may well need increased provision with regard to SEN and it is worth considering that issue.However the fact that a child has or may have SEN and may not be aware regarding bullying is no excuse for a failure to deal with bullying.In fact I consider it is even more important that the school takes prompt action.

Even if you think the school have taken action on this occasion it is still worth writing.This is because if there are further instances of bullying your original letter will serve as a record of your concerns.Sometimes schools deal with each instance as an individual matter and do not look at the developing pattern.

It would also be worth obtaining a copy of the SEN policy,the Anti-bullying policy,the complaints procedure and the behaviour and discipline policy.The school office should be able to supply these.It would be worth using them to check that school is acting in line with its own guidance.

 

If your son was kicked it should also have been documented in an incident book.

The information on the link describes clearly what you need to do.

It is difficult to offer specific advice regarding school and SEN without more information.

Does your son have a Statement of SEN ?

Is he on the SEN Register at School Action or Action Plus ?

What support if any is currently provided in school and do you have an IEP ?

Does your son have a diagnosis and if so what is it ?

Sorry to ask so many questions but the answers make a big difference regarding what options to suggest.

I hope you have a good weekend at the caravan. <'> Karen.

 

[Suze]

You sounded really down so I just wanted to share some positive vibes with you <'> , my son really struggled through primary school , he was bullied and was also violent and lashed out at other kids.He hated it and we really struggled through those years , it was pretty horrid.Anyways hes 13 now and has at last found his niche ,he goes to air cadets (first ever ever social group he has stuck with and enjoyed ), he is at last supported well at high school and is really enjoying the diverse subjects high school offers.wE NEVER KNOW WHAT THE FUTURE HOLDS FOR ANY OF US BUT i JUST WANTED TO LET YOU KNOW THAT YOUR SON CAN GET THROUGH THIS AND FIND HIS OWN NICHE IN SOCIETY...(APOLOGISES FOR TYPO ..had too much wine did,nt mean to post block capitals )

[cmuir]

Hi

 

My son is 7 and has AS. R has required and had 1-2-1 full-time support since nursery - he's in P3 now/about to go into P4 in the summer. I had reservations about R attending a mainstream school, but was advised/encouraged to allow him the chance to attend a mainstream school. We're now at the stage where I know (for sure) that R does not get the full-time support that he's supposed to get. It's shared between another 4 kids in the class, therefore he only gets 1/5 of what he's supposed to get. This is common practice. However, academically R is doing okay (he's only just achieving the grades), but self-image is the big issue now. R loves company and is very sociable (though, not always successful!). He now knows he's different, just as his peers know he's different. It's peaks and troughs. Sometimes, things tick along nicely and other times, it's a nightmare. I'm extremely concerned that CAMHS have said that R is extremely anxious and may be showing signs of depression (told them so over a year ago, but better late than never, eh?!). His behaviour at home (and at times in school) is appalling - he's extremely challenging, both verbally and physically. I'm of the belief that this as a direct result of finding the mainstream school environment very difficult and he's 'releasing' when he gets home. This is a view shared by some professionals (mainly healthcare). I'm currently awaiting the results of a placing request made to an autism specific school. However, as expected, because I'm going against the grain (ie inclusion is the big thing), not everyone is fully supportive. A lot of it boils down to budgets sadly. However, I believe we have a strong case given that we've tried mainstream.

 

Sorry, not deliberately trying to avert attention to my situation, but trying to illustrate what can happen. I think it's not a clear cut black and white situation to be in, but there's a danger that professionals will try to keep your child in mainstream because frankly it's cheaper. I'm a big believer in gut instinct.

 

Best wishes.

 

Caroline.

[Sally44]

The whole 'inclusion' thing really annoys me.

I know that LEAs have to (I think by law) try to include children in mainstream.

But I think there comes a point when parents feel like it is being pushed down their throats when it is inappropriate.

Some children can and do go to mainstream schools with support and do okay.

But it is the insistence and the 'mantra' of 'inclusion', that stops being 'child friendly' or 'child centred' and simply becomes a political agenda.

These things all go in cycles, and are just the latest fashion or trend. My own sister (not ASD but learning difficulties) went to a special school and did well enough to be working and living independently. She recently celebrated 30 years with the same employer. Yet I am convinced that if she had been born recently she would have stayed within the mainstream system, and I don't have any confidence that she would have made the same achievements within that system.

But the fashion has moved from 'special need environments' to 'inclusion', in the same way that 'care in the community' became popular and many institutions were closed down.

But I don't understand why it has to be an either/or situation. We need choices for our children. We need to be able to choose mainstream or ASD only educational environments because that is what our children need.

When you think of all the time and input of professionals and the time and energy spent by parents when there is a child that is not coping in school - then surely in those circumstances the prospect of an ASD only school brings a sigh of relief from everyone (and must surely be a better use of LEA resources). Yet too often it is denied by LEAs that continue to push for inclusion.

I'm convinced that in 5-10 years time there will be a total change of opinion and most children with an ASD may be taught in ASD only schools, and then most of the posts will be from parents trying to get their child into a mainstream school and being refused by the LEA.

Maybe I've just lived too long

[bikemad]

<'> I had to move my son to another school because the bullying got so bad that even with the lea and cops invovled it never stopped n my son got suicidal age 9........the new school is wonderful but in a years time it is comp finding time n he is adamant he wont go cos all the kids from the other school who bullied him also go.....it is so hard isnt it.... <'>

[connieruff]

I agree totally, mainstream is not the place for ASD children.

The teachers have to be very experienced and kind and patient to help ASD children in school.

My friend exploded with rage the other day as she said that her lovely girl, who she had brought up with all the love in the world had to endure all of the horrible brats who come from horrible dysfunctional familes and because she has learning difficulties is an easy target for these sad angry children who bullied her so much she had to take her out of school.

Why should our children have to endure these children? And why are schools so pathetic at stopping our children being targeted?

[bikemad]

I agree totally, mainstream is not the place for ASD children.

The teachers have to be very experienced and kind and patient to help ASD children in school.

My friend exploded with rage the other day as she said that her lovely girl, who she had brought up with all the love in the world had to endure all of the horrible brats who come from horrible dysfunctional familes and because she has learning difficulties is an easy target for these sad angry children who bullied her so much she had to take her out of school.

Why should our children have to endure these children? And why are schools so pathetic at stopping our children being targeted?

 

Thats my feelings to a t.

[CWP]

Hi everyone,

 

Can I just start by saying sorry for not responding earlier. I've had a bit much on recently. My neice was in hospital but thats another story. Anyway thanks so much for all your replies. I should probably explain a bit more. My son doesn't have a diagnosis yet. He has been referred for diagnosis but we have been told he might not be seen as they have too many referals and are prioritising kids going from nursery into primary school. I had taken him out of nursery previously because they were worse than useless and punished him for tantrums making them worse and causing him great anxiety. It was his Primary one teacher who straight away said she thought he had Aspergers and was furious at how he had been let down. I have asked about statements but apparently they don't apply here in Scotland. He has a SALT who goes in every week. The head teacher has said to us that very often he does think people are teasing him when they aren't and he thinks any form of touch is deliberate and so I'm not sure now what actaully happened that day. He seems to have let it go now though and thankfully there are only two weeks of school left. In September we have been told there will be a meeting between us the Ed Psych, SALT, Paediatricain, new teacher and head teacher to discuss way forward. Everyone involved has supported his referall for diagnosis and it seems perfectly clear to them but its getting him assessed that is the problem. They keep saying that even if he doesn't get called that they will support him the same way they would if he has a diagnosis but I'm not sure if thats true. What are the main benefits of diagnosis?

 

Again its great to know you guys are here for advice its much appreciated. I got so stressed over that incident and my neice being in hospital and then my son bolting away in a crowd that I actually collapsed. Feeling great now though! LOL

[Sally44]

If your son does not understand when he is being teased or when he isn't, and also thinks that accidently slight touch is deliberate, then those things are going to make it hard for him to understand exactly what is happening in any interaction with other children or even teachers. That could make him anxious, stressed, potentially angry and explosive etc. You can't rely on him forgetting the incidence because the same thing will happen the next time.

He needs to have thorough assessments so that everyone knows what he can and cannot do.

A good ongoing assessment tool for social interaction is SCERTS. You can google about it and also speak with the SALT about it.

If he has needs then they should be meeting those with or without a statement. The difference is that a statement is a legally binding document and therefore the provision in terms of hours of support and staffing arrangements such set hours of support from a nominated TA have to be fulfilled under the Statement. Without a Statement you have no legal obligation and therefore if there is a shortage of staff, sickness, another child's statement needs to be fulfilled etc then they can literally not support your child to the level he needs and you can do nothing legally about it. You can complain of course, but you cannot take them to an educational tribunal about it.

If your son is sensitive to slight touch, then you need to look at sensory integration disorder as well. This is when any or all of the senses can be over or under sensitive or can fluctuate between the two extremes throughout the day. The senses are sight, sound, touch, taste, smell, balance and co-ordination.

Regarding assessments being made on nursery children as a priority over your child. If I were you I would ask for that in writing. I doubt they would dare put it in writing to you. That is discrimination under the Disability Discrimination Act. Your child has as much right as any other person to be assessed regardless of what stage of the schooling system he is in.

And the longer he remains mainstream with little or no support the more they are going to argue that he doesn't need anything extra because he has been okay so far.

You might find it helpful to speak with the National Autistic Society about how things are proceeding with assessments and what you can do to help things along.

[CWP]

Thanks Sally thats a great reply. If they refuse to see him then I will definately be fighting my corner. The problem is that i've been told Statements don't exist in Scotland. I'll get onto NAS and try and get a hold of what the correct procedures up here should be.

 

 

[cmuir]

Hi everyone,

 

I have asked about statements but apparently they don't apply here in Scotland.

 

 

Hi

 

In Scotland the equivalent of a Statement is a Coordinated Support Plan (CSP). I recommend that you contact an organisation called Enquire and ask for a copy of their parents guide.

 

http://www.enquire.org.uk/

 

I live in Scotland. Had I not pushed for answers, then I feel sure I'd still be waiting for a diagnosis for my son. It took a number of years, a collection of reports, a number of referrals to various professionals and I was no further forward. Finally, I'd had enough of being passed from pillar to post - although I accept that this can take time because often a number of individuals input is required in order to give a diagnosis. It was only when I became firm shall we say, that things started to happen. I even phoned individuals myself asking for cancellationa appointments. Education professionals say that a diagnosis makes no difference, however, I beg to differ. Personally, I'd would make getting a diagnosis a priority because there are organisations (Visiting Teachers Support Services - VTSS) that can be brought into school for example, but that's entirely dependent upon a diagnosis of an ASD. I recall asking the question 'So, what happens now?' and was surprised that suddenly services/support became available, when it previously hadn't been because we had no diagnosis. I think it's very much 'luck of the draw' and a bit of a 'postcode lottery' as to how much help you can get for your child, etc. Also found that 'pester power' (being incredibly persistent) helped a lot. Sad - really shouldn't be that way, but it is in my experience.