Mainstream Dream

[skye]

I am really going crazy these days trying to figure out what the best thing for my DD is as far as school is concerned. I have been told by the SENCO that my DD is definately a "mainstream" kid. However it seems to me that the mainstream is never willing to bend to my DD as she is the extreme minority in the school so it is always my DD bending or being forced kicking and screaming into the round hole that her being a square peg does not fit into.

I really do not at all understand why it is soooo important for inclusion. I am glad that there is inclusion in activities and other things where my DD's participation is voluntary, however I don't think mandatory inclusion into a mainstream school is doing my daughter any favours. In my area there are ASD units in a couple of mainstream schools. These look absolutely great to me. I received a pamplet about them and there are pictures of classrooms with partitions between every desk and the rooms look relaxing and calm. Hey, my DD could do great in a place like this. Then it comes down to getting one of the 6 places available and once accepted the main objective is to get them ready to go back into mainstream as quickly as possible. Maybe even as quickly as 2 terms I was told on the phone.

I don't want her to go back to mainstrem within 2 terms!! The whole point is I want my DD to go somewhere where she feels comfortable and safe and where she doesn't get attacked with singing in assemblies she can't cope with. Teachers who think it is extremely funny to call the girls lads everyday even though she is on the floor crying insisting that she is a girl. I want a place for Liberty! I want her to be listened to and taken into consideration instead of on heep on the floor with high pitched screams becasue someone took her spot in line and everyone standing there looking like she is crazy.

There are so many kids with ASD's now. I am aware of at least 5 in my daughter's very small school. I know of another school where there are a further 3 at least and this is in my tiny village. Isn't it about time all of our children have access to ASD freindly classroom and teaching environments? Instead of paying for everone to have a one to one, how about setting up a classroom for kids with ASD's to go and sit during assembly and to be able to go to to calm down and spend time being themselves. I am fed up at the state of the system right now. There has got to be a better way! The ASD units are great. They need to be a permenant fixture and access to at least one in every county for every child with an ASD.

I realize that there are some people who think that inclusion is the best way but I don't. I don't think that the NT kids behaviour is going to rub off on my DD and to be honest I am not sure if I really want it to. My daughter is who she is and I want her to have the chance to go somewhere everyday that she likes around people who understand her needs and do not look at her like she is from another planet because she freaks out about gravy on her lunch or licks her hands. SO what! That is who she is and I love her and I want what is best for her and all kids with ASD's! KIDS WITH ASD'S RULE even though they would point out that kids are baby goats! I say down with mainstream school! We need a change!!

[cmuir]

Hi

 

My son is 7 and has AS. He's been in mainstream - I was encouraged to allow my son the chance to try mainstream schooling in the hope that he'd learn from NTs (that's how it was 'sold' to me). He's in P3 now and I've done a complete U-turn in that I no longer believe that children with an ASD should be trapped within mainstream schools. Obviously I cannot stereotype, but I'm aware I'm not alone in thinking this ... Might sound a bit dramatic, but we keep hearing a lot about inclusion, yet these mainstream schools do not have the resources (budgets/expertise/staff/etc) to support these kids, even with the best will in the world. I've very recently submitted a placing request for my son to attend a school for autistic children (incl AS, etc). CAMHS have finally recognised that R is suffering from extreme anxiety and possibly depression as well - he told them he knows he's different and is very sad about that. He also told them that he gets angry a lot and doesn't know why and then something happens and he gets confused. When I heard that, despite knowing this, I cried. Finally, that felt like confirmation that my son's not coping. His behavioural at home has deterioriated significantly and his behaviour isn't great at school either. Sad thing is that the school and other education professionals are unwilling to speak up during review meeting, yet will privately express concerns. This really sickens me because it appears to me that those people are not considering what's best for my child, but thinking about what's best for the school as a whole (R gets 25 hours support, but I've discovered it's being shared between 4 other children!). I firmly believe that if R were in a specialist school around others who are like him, he'd be happier, more confident, have higher self-esteem, etc.

 

Every case if different, but you know your child best and have to do what's right for your child.

 

Best wishes.

 

Caroline.

[nannysandy]

Hi SKYE, I cant offer you advice but i CAN say thats exactly how i feel!! I dotn want inclusion !!What is important is that our children are happy and listened to, my son, Ben (13)is in mainstream, he has never fitted in anywhere except for a couple of years ago, one of these asd units locally runs an after school club even for those who dont go to the school, we were told he could go there whilst we were going through the proccess of geting him diagnosed, the minute we walked into the room, he fitted in, it was like a "room full of Bens" after the first 3 weeks he even let us leave him for an hour like the others, he LOVED it, and i didnt feel so alone. After he was diagnosed with anxiety he was no longer able to go and it broke his heart, he has since been saying he wants to go to a special school because he would fit in and i only found out last week that its this unit he is talking about, i never realised he thinks it was a special school not just a unit and thats where he wants to go, although i did apply for a place at the school they told me he would never get a place in the unit because he isnt statemented and would never get statementd so i was wasting my time so i didnt appeal. His present school say hes fine but he is never in class he walks around with the senco and then gets sent home when the senco has meetings and things , the senco says that the strategies in place for Ben are the most prescribed in the school even more than some of the statemented children, yet Ben still cant cope, he has been out of school for nealry 2 months now and im being threatened with court despite 2 doctors letters. We have doen the best we can and if we get nowhere thsi week we are going to deregister Ben and home school, we arent qualified for this but we know what he needs, we can give him everything practical he needs to be happy and make some kind of life for himself in the future, ironically one of the rules for home ediucating him says we should teach him appropriately taking into account is special needs, what i dont understand is, why school doesnt have to do that!!!!!!Best pf luck with your daughter!! Nannysandy

[Karen A]

Hi SKYE, I cant offer you advice but i CAN say thats exactly how i feel!! I dotn want inclusion !!What is important is that our children are happy and listened to, my son, Ben (13)is in mainstream, he has never fitted in anywhere except for a couple of years ago, one of these asd units locally runs an after school club even for those who dont go to the school, we were told he could go there whilst we were going through the proccess of geting him diagnosed, the minute we walked into the room, he fitted in, it was like a "room full of Bens" after the first 3 weeks he even let us leave him for an hour like the others, he LOVED it, and i didnt feel so alone. After he was diagnosed with anxiety he was no longer able to go and it broke his heart, he has since been saying he wants to go to a special school because he would fit in and i only found out last week that its this unit he is talking about, i never realised he thinks it was a special school not just a unit and thats where he wants to go, although i did apply for a place at the school they told me he would never get a place in the unit because he isnt statemented and would never get statementd so i was wasting my time so i didnt appeal. His present school say hes fine but he is never in class he walks around with the senco and then gets sent home when the senco has meetings and things , the senco says that the strategies in place for Ben are the most prescribed in the school even more than some of the statemented children, yet Ben still cant cope, he has been out of school for nealry 2 months now and im being threatened with court despite 2 doctors letters. We have doen the best we can and if we get nowhere thsi week we are going to deregister Ben and home school, we arent qualified for this but we know what he needs, we can give him everything practical he needs to be happy and make some kind of life for himself in the future, ironically one of the rules for home ediucating him says we should teach him appropriately taking into account is special needs, what i dont understand is, why school doesnt have to do that!!!!!!Best pf luck with your daughter!! Nannysandy

 

Hi.I thought I might make a suggestion based on experience on the Forum.

If you are still considering taking your personal complaints further it might be worth bearing in mind that the Forum is open to be read by anyone.It is possible that people from the LA or elswhere could read your posts and identify you.It may be best to not include information such as the fact that you do not consider yourself qualified to home ed.It could provide the very information that others might use against you.

 

If you pick this up and decide to Edit your post and mods wish to edit this that will be fine.

I am just aware that it is possible that court action could be taken against you re attendance.Karen.

 

[Sally44]

Well I could have written any of your posts myself!!

You could write to your local authority (find out who to address it to), and you could also copy in your MP. They should be made aware of parents feelings.

I met with the Head of Commissioning at my LA and said exactly the same things, and was told that most parents want their child to go mainstream. However all the booklets about schools in our area, don't even have any advice about which ones have greater experience or expertise in ASDs, which I pointed out to her.

In our area we do have schools that are called Enhanced Resource. This is a halfway house between mainstream and special education. But this is at primary level. At secondary level I cannot see my son copying at all, and the only alternative seems to be for lower functioning children - and I don't mean to offend anyone. But there are no ASD only schools for children who are higher functioning, but not able to benefit from the mainstream environment.

And I too was told that my son 'would learn from role models'. Well how can he do that then? Because if he could he would have learnt from his family and siblings and wouldn't have got a diagnosis!

Parents need choices.

And I also said about how it must be more cost effective to have an ASD only school and how it would reduce the amount of parents going to tribunal. As each tribunal costs the LA about £10,000. But they would rather pay that and fight to deny our children and us an environment that I believe would work better. I know that our LA funds 5 places at one private school (for high functioning secondary age children who cannot cope mainstream), and the fees are around £42,000 per child. And that is only one school! Makes my blood boil.

You can phone round and visit other schools in your area and see which ones have more experience and expertise in teaching those on the spectrum.

I too don't understand why there is this need and constant pushing for conformity. That will all end as soon as they leave school. They need to be taught ways of coping and how to interact as and when they can. Not forced to such an extent that they are constantly under pressure, or full of anxiety, or having meltdowns and inappropriate behaviour.

There is another topic about children not being invited to birthday parties. Who is kidding who about inclusion. Our kids are not included.

Then, at other times when you actually want them to do something about difficulties they have, it is just ignored or taken as typical of being on the spectrum. I had exactly the same discussion about my son in his previous school about assemblies and school dinners. He sat with his hands over his ears the whole time. But they wouldn't allow him to sit it out in another classroom because he needs to get used to 'whole school experiences'. So I sent a pair of DIY ear defenders into school. And the school complained that they 'made him look different'. So I got the OT to speak to school about it. Then the OT said she wanted to start a programme to wean him off the ear defenders. And I said there are 100 things more important and more difficult for him that need addressing before we start on 'trying to make him look normal'. What are the priorities of professionals, and what motivates them?

And when I asked for him to be supported in the playground because he would walk up and down the fence repeating TV dialogue to himself. I was told 'he needs to be allowed to be autistic'. Why, to save you money?? So I finally managed to get in his statement that they do have to support him during dinnertimes and breaktimes. And I have said that if he spends a significant amount of time stimming in this way that he is to be offered an alternative ie. "do you want to play", and if he says yes, which he usually does, this proves what he prefers to do and therefore they have to support him to ensure he is successful.

But unfortunately there are too many children and not enough places. In the autism unit in my son's current school it should be for children like my son. But it is presently full of non-verbal children who are an overspill from the special education school. But why does my son have to miss out on that type of environment just because there aren't the places available.

I did go to tribunal and to be honest, my son now has the same level of support (and in some areas more), than the children in the unit because I had evidence that that was the level of support he needed. But it was hard, and costly (because I had to resort to private reports and a solicitor). But I will have the same difficulties when we get to secondary age.

[baddad]

It's horses for courses...

Inclusion theory is undoubtedly the 'best' but inclusion practice doesn't always live up to that.

However, if there's not a HF autism unit in your area (I'm assuming HF, for mainstram to have seened like the best idea in the first place)then an SEN placement may be an even worse option for your child - not because there's anything 'wrong' with SEN, but purely because it isn't any more 'right' than the mainstream option and has additional curriculum and teaching strategy considerations that are geared to children with different kinds of needs.

All you can do is look at what's available and make your choices - without prejudice - based on that.

If you have a square peg and the only options available are round holes, then you have to find the 'best fit', and try to work on finding ways of shaving off some of the sharp edges, widening the circumference at strategic points and offering up some lubrication! (that's a three-way plan, you'll notice - with all parties working together).

Sometimes the alternative to a 'tight hole' turns out to be one that the square peg falls straight through the middle of - which can actually be far worse than lubricants and a good wiggle

 

Having worked that metaphor TO THE DEATH - I'm off to find a nice, rectangular pit gor a good lie down!

[pearl]

Thats kind of what I was getting round to articulating BD. JP did well in mainstream - it wasnt ideal & by no means a perfect fit, but better for him than special ed - as you said, horses for courses.

[Sally44]

I think parents need choices instead of feeling pushed into a provision they are not happy with. And alot has to do with current fashions or trends. My sister did fine special ed. She now lives and works independently with support. But to hear the inclusion officers talk now, they make you feel like special ed makes them totally removed from society!! Not true. At the time (early 1960's) the doctor told my mum 'if your daughter remains in a mainstream school she will always struggle and will always feel like she is at the bottom of the heap and may well learn nothing'. Does that sound familiar. In a special ed environment she was allowed to blossom and shine. She didn't pass any exams then, but she learnt to read and write. Through her work she has gained some basic computer qualifications. (I hope and pray that my son (who is actually more intelligent than my sister) will even reach the same level that she did special ed within the mainstream system).

There are lots of different school environments for mainstream eg. girls/boys/faith only. I think we just need more options, especially when some LEAs are paying a huge amount of money per annum on paying private school fees because of parents that have won a private placement for their child because what the LEA offers is not suitable. I feel this is such a missed opportunity for LEAs to set up their own HF ASD only schools.

[skye]

I am in complete agreement with Sally here. I am really at a loss of what to do here. Then I do a search on Google only to find that there seem to be quite a few schools for Autistic children in the UK just none in my area. I don't know if I need to start a campaign or kick up a fuss or what, but I see a lot of inefficiency in the way things are currently done. My daughter gets a taxi to and from school everyday. I am not complaining, but how much must this cost? I would be happy to get her there some other way if it wasn't such a struggle to get her to go there at all because she is anxious and hates going. My DH attended a special school for what they called back then as being "socially disturbed". He enjoyed it and has very fond memories. I think more than anything he was glad to escape the bullies. He had a nervous breakdown at age 7. I have to admit that his spelling is really, really bad. Other than that he managed to get married and live a happy life even after the dreaded special school placement.

I also understand where BD is coming from and I will probably need to take all of that advise on board because at the moment that is where I find myself, between a rock and a rock if you know what I mean. Also, thanks to Pearl. It is still early days with my DD and things just may work out in mainstream yet although I am not holding my breath!

I totally agree with Caroline and what she said about everything and I was sorry to read about nannysandy and the problems with DS and problems getting appropriate dx or statement. Thanks to everyone for replying and I hope I didn't leave anyone out!!

[baddad]

I am in complete agreement with Sally here.

 

Yes, parents need choices. But choices must be finite (unless you propose that every child can have their own school if none of the available schools fit the parents criteria?)

the post code lottery is a huge problem. The system is far from perfect. More specialised schools/placements are needed... but.....

 

[skye]

I do see your point baddad. It's still nice to vent every now and again. I am pretty new at this I just need to get it off my chest, decide whether I want to invest time in it and move on to the next thing. Basically I want my daughter to go to a sensory friendly ASD unit and the only thing that is currently available isn't suitable. That's the bottom line and it's pants!

[Sally44]

I do see your point baddad. It's still nice to vent every now and again. I am pretty new at this I just need to get it off my chest, decide whether I want to invest time in it and move on to the next thing. Basically I want my daughter to go to a sensory friendly ASD unit and the only thing that is currently available isn't suitable. That's the bottom line and it's pants!

 

Have OT been involved in looking at her classroom environment and in talking through and assessing her sensory needs?

Are there any schools in your area that are mainstream, but which also have an autism unit?

At my sons current school (Enhanced Resource) which is mainstream with around 5 children with ASD per class, around 2 classes that are mostly HF ASD and School action plus, and an autism unit - there is a fair amount of flexibility. For example some mainstream children go to eat their dinner in the autism unit because the smells in the main food hall are too overpowering and the noise too much for them. My son wears DIY ear defenders during assemblies and dinnertime, that allows him to cope. The Autism Unit has a sensory room and play equipment (ie. large trike) that my son and another boy to use as a motivational treat. There is alot of tweaking that can be done in a school that has experience of teaching children with autism. I know there are less options around by secondary age, but it is still worth looking around.

As your daughter is taxied to school, I presume she is in some kind of enhanced resource environment??

[Mum of 3]

Skye, you've posted before about problems in your DD's school. Is it possible thats it's the school in particular, and not 'mainstream' schools in general that is the problem? Is it possible to have a look around at some other primary schools nearby and find one that might suit your DD's needs better? Schools can be very fixed in their ideas and attitudes, particularly if the staff have been there for quite a long time (which is often the case in small village schools). Unfortunately, this area is very keen on 'normality' and 'fitting in'. A school with a staff that has moved around a bit might have teachers who are more... shall we say adaptable.

[baddad]

I do see your point baddad. It's still nice to vent every now and again...

Basically I want my daughter to go to a sensory friendly ASD unit and the only thing that is currently available isn't suitable. That's the bottom line and it's pants!

 

Yep, venting is definitely good for the soul!

Pants - yes it is, and in an ideal world and all that... Hopefully you'll find something that can offer a good compromise, 'cos in reality that's often the best we can hope for.

 

Very Best

 

L&P

 

BD