Its hard to know we are choosing the right path ...

[magsi]

My ds1 is 5. He has a severe right sided Hemiplegia and cannot talk. Cognatively he is just below his age group. He uses Makaton and an electronic communication aid called a Future Pad. He manages some Makaton, but with only the use of one hand, it is hard for him. He is in a split placement at the moment with 2 days at a mainstream and 3 at his special needs school. He has 1 to 1 all day at mainstream and the "helper" has had makaton training. At the last "placement meeting" at his sn school, we took the advice of the Educational Psychologist who thought he was at a key age to start mixing with his "able boddied" piers. I had so many reservations, you know the ones about bullying, feeling isolated etc.. I still cannot be sure we are doing the right thing for him. The more stories and experiences I read from adults with sn who had experiences in mainstream school, the more I think I am kidding myself that this is a good and positive experience for him. How can not having hardly any friends and never being picked for games teams and being bullied be the right thing for him. I realise I have to give him the chance to discover what he can achieve (or so I keep telling myself!). but lets be honest, the social acceptance issue is the one we remember when we are adults. I feel like just putting him in his sn school full time (which is excellent). Why should I keep him in a situation which only reminds him on a daily basis how different he is. Sorry, bit of a rant, but its just difficult sometimes to believe you are doing the right thing for them

[sunnysideup]

magsi, what a lucky boy he is though that his mum is so sensitive to what his needs are...some people would be much less thoughtful than you are

i understand totally your worries, specially if his SN school is really good....and you're right, social acceptance and having friends is such a major part of school life. Though I do think kids of 5 can be remarkably accepting so it may be easier than you think for the time being?

It's such a difficult issue and I'm sure there's no easy answer. I'm sure it could be a difficult position for him if he simply sees stuff going on all the time that he can't jion in with....maybe have another meeting where you can get the school to spell out how they will include him and how they will encourage genuine social interaction. Say from the beginning what your concerns are and make sure the situation is reviewed quite soon so you can be sure you know how he is coping....

I think it's down to the school to reassure you here - it's their job, make them do it!!

[Jimjams2]

Remember you can always change your mind. Follow his lead, if he seems unhappy at ms insist he goes full time to special, but don't be afraid to try. We were able to move ds1 from ms to special in a matter of weeks.

[magsi]

Thanks for your comments guys. The trouble is, because he cannot talk, I just don't know what he is really feeling. Sometimes he is eager to go to school, but sometimes we have lots of sit-down protests going up the school drive (mind you, I expect that is just normal!). Your right sunnysideup, kids of five are really accepting but they tend to "not approach him" much because he cannot communicate with him. His "Future Pad" is a great tool though for getting the other kids over, (although he is very protective of it and can scream and shout which is a bit ofputting for them). I suppose they will just get used to him and his sometimes very loud vocalizations. I think it is more the school that needs to get used to him. I asked if I could sit in on a class and observe ds1 from the back when he first went up into reception. The Head said that this was not school policy and did not want to "single out" ds1 from the outset. I understant where they are coming from up to a point, but as far as I am concerned, ds1 is very different having an adult helper with him all the time! I wrote a letter explaining that it was important for me to observe him because I could tell from his expressions whether he was "getting it" or not. Still they stood firm and have not let me sit in. I realise I am going to have to take a reluctant step back where ms is concerned. I ask how he is getting on with the other kids a lot, and the other day his "helper" said that he wanted to join in and play football with the kids at breaktime. I was really pleased, but as far as I could tell, his helper didn't encourage this at the time. WHY WHY WHY!! this was such a positive step for him. I think they are going to have to start noticing these very important big steps that ds1 makes for this integration to work properly. He has been to a couple of "mainstream" birthday parties where I have satyed with him. Watching him and his classmates, he is still very much "left alone" and doesn't want to join in with every game. He is still very much reliant on his "adult" for support which is understandable. God, there's nothing like taking your sn kid to a ms school party for amplifying how "different" they are. I am secretly relieved when these parties finish to return back to our own little world... sad hugh!!

[Jimjams2]

I'd keep a careful eye (ds1 can't talk either so I know where you are coming from there). I do think it is very difficult to include a child who can't talk meaningfully into mainstream. Which isn't to say it isn't possible, just that it's hard. We used to get a lot of the "we can't do that because the other children aren't allowed to" and it drove me mad. The other children weren't severely autistic. These things caused him a lot of problems. There was a real "them and us" attitude at mainstream- ds1's special school is far more interested in working in partnership with parents.

How much of the curriculum is your son a) able to access and b) gain something important from? DS1 could only access very limited parts and to be honest it wasn't what he needed to be taught as well. Socially he was isolated within the school- so it really was pointless him being there. In your position I'd look and see what your son is getting out of it in terms of a) curriculum b) social life c) accessing mainstream society. DS1 access mainstream society far more now he's in special school. If your son can get more from the special school then don't hesitate to move him- never mind what the current "inclusion" policy is. If it benefits the disabled child then great, but if its at your son's expense then forget it.

I do think its important to follow gut feelings on this sort of thing. Do you notice any difference at home one days your ds has been at mainstream- ds1 used to come home very wound up- although we only noticed the difference once we'd moved to special school where he generally comes home very happy.

[magsi]

Thanks Jimjams2. It is good to know that I am not the only one who has gone (going) through these difficult decisions. I think the issue of not being able to confidently communicate is a very important one. I don't think there is any disability more issolating than not being able to talk and express yourself. When all the different "experts" who worked with ds1 in sn school suggested that he was "not a sn student longterm" and we should give him a chance at ms and to mix where he would get more "chatter, stimulation and interaction", we took their advice and decided to give ds1 a chance. I share your feelings on whether he will be able to follow a "curiculum" or what work he could produce. To be honest, this is not top of my agenda for ds1 anyway, the fact that he is being put in a situation where he is surrounded by children who are able boddied and just reminding him how different he is is the important one for me. I know that sn school is not, I suppose the "real world", but as far as I am concerned, it is ds1's world, and one in which he does not feel the odd one out!! Thanks again

[Jimjams2]

I identify with all of that. DS1's curriculum now is things like shopping, hydro, trips to mcdonalds lots of sensory work etc etc. Reading and writing are not high on my agenda either, although they do do some. Maths lessons can be in soft play, RE turns into a sesory session. There's music therapy and horse riding etc. All far more meaningful for him- and daily work on communication.

What did they mean by "not a SN student long term". What is the long term outlook? I'm not too worried about ds1's special school not being the real world as he's never going to live in the real world. His school can manage behaviours and teach him to function with his disability in the protected environments that he will live his life.

Happiness is so important isn't it? I think sometimes inclusion doesn't value it enough.

[magsi]

Too right Jimjams2. I think it takes a while to have the courage to realise that ultimately you don't have to agree with the "experts" and if you want to protect your child by keeping them in an environment more "suited" to them then you flippin' well should do. I am not one of these who ignores expert opinions on the whole, in fact I have always "done as I was advised" where ds1 was concerned. I just think that when a person has so much against them in life, it is so important to preserve their wellbeing, happiness and security as much as we can. After all, in adulthood the problems are all too real wouldn't you agree?!!

[twoisplenty]

Hope you don't mind me adding my thoughts to the discussion.

My ds is nearly 8 yo and has virtually no speech. He uses makaton quite well. He also is physically disabled. He goes to special school.

The headmistress did say that "life is mainstream" when my dh questioned the role of inclusion for children. However she, of course, has strong opinions for special school!

Me and dh thoughts are this: our ds is very secure in special schooling, his friends are all like him (but all different and individual too) and the children are all caring towards each other. The school understands their role in supporting the children and give them education geared to each individual based on their ability, so children who are coping well with a curriculum similar to mainstream have that level of education. Our ds could not cope with that level so he has the same curriculum but in a class geared towards their ability. The staff use makaton as a matter of course.

I never wanted my ds to attend mainstream school as I think his confidence would suffer. He would be included in the classroom but he would not be accessing the curriculum therefore he would struggle to make friends imo.

However our ds loves the company of children generally so we take him to things such as beavers and computer club. He is still sheltered (as these things are only 1 hour) but the other children enjoy our ds company. They are supervised by the leader so bullying etc cannot happen.

Dh and myself really feel comfortable that our ds is having good education in the day but accessing the "real world" for social occasions. He is learning to interact with his peers but in a relaxed way, not forced into it by having to attend mainstream ed.

What I have just written is my opinion, just to give food for thought. I fully understand parents who believe in mainstream ed for sn children - for some it works very well. But for children with no speech i think that is a severe disability and without speech, mainstream children just don't know how to approach the child - children do not know makaton for a start!

I would love to know your thoughts.

[magsi]

Hi Twoisplenty. Your post is a breath of fresh air in that it seems you have worked out the perfect balance of school and social life for your son. He is very lucky. I also believe that not having speech is such a disability in a mainstream situation. I think if a child is physically disabled, things can be put in place to overcome this to a certain extent, but even though my ds1 has a "computer" to use (and I can't imagine a child having patience to hang around while my ds1 compiles an answer to a question by which time the child has forgotton what the question was!!) communication has to "flow" don't you think? Blimy, listen to me, there's nothing like putting pen to paper to confirm your thoughts. I don't see ds1 in ms for much longer!!

[mymatemax]

Magsi, I really share your concerns, when DS2 was dx'd with CP, I thought OK so he won't be as mobile as the other kids & will in their opinion be a little different but if he has the confidence & personality to cope I,m sure he'll be fine.
As he's developed, his behavioural problems are becoming more evident & I fear he will not have the confidence & the communication skills to cope in ms.
Like you I feel I need to give him the chance to go to school in the village with his peers (to succeed) but without being negative, as he gets older & progresses to a larger school I'm not sure he'll cope.
In reality kids are cruel & as parents our reaction is to protect them particularly when they are less able to do it for themselves.
Success should be more about them thriving & being happy & less about inclusion.

[twoisplenty]

Thanks for replying Magsi! It's so lovely to hear from someone who has a child with no/little speech - I don't know anyone else. Our ds also has cerebral palsy so physically things are tricky but he copes well, but he is getting frustrated with communication, even though he can communicate through (some) makaton.

I would be very wary of a head teacher who wouldn't let a parent watch the class. That wouldn't give me any confidence. In your ds special school, do they have an open door policy to parents? Our ds school is happy for parents to stay in class any time. And for me it's so nice to spend time with my ds and see what he's up to!

Our ed psychologist visited recently and suggested tentatively that we think about our ds attending a school for the deaf - but HES NOT DEAF! The idea is to help his communication by swapping over to british sign language. With his level of ability however I don't think he is in that league! He can only sign one word in a sentence!

I don't know, sometimes these experts throw us into complete confusion. We have 2 physiotherapists and every time, one physio has the opposite opinion of the other. We have had to become experts and basically trust our instincts. It sounds like that is what you are doing now with your dilemma over schooling.

I'd love to know how you get on and what decision you make. Please keep up the thread because I would really like to know.

[magsi]

Hi mymatemax. I totally agree with what you say. When I remember back to my school days (many moons ago!!) I remember the isolation you felt when you were not "up there with the top dogs" on the social scale and how worthless you were made to feel by the "kings and queens" of the playground. I can't imagine what it must be like now with teachers not even being allowed to raise their voices (an exageration I know, but I am sure it is a lot more lenient now). What I am trying to say is that it was bad enough being able boddied at school ..... need I say more

[twoisplenty]

mymatemax - how old is your youngster? Is your ds in school?

[mymatemax]

My DS2 is 4 & due to start school in September, & I'm becoming increasingly concerned about how he will cope.
We went to a play session this week, he hated everything about it, the noise, the kids, all the other kids running about & ds1 was so protective of him, trying to stop the other kids taking the stuff ds1 was playing with, & thats the other thing I don't want ds1 to have to spend his school playtimes looking after his little brother.

[magsi]

Hi Twoisplenty. Yes, ds1's special school does have an open-door policy. Actually, they have an "observation room" just outside the classroom where you can watch on a computer (a great idea, as my ds1 is totally different if he knows I am in the class!!). Do you know just thinking about his sn school brings a big smile to my face and makes me feel all warm. God its great!!! I am very wary of ds1's ms head and her "not budging" ways. But I am trying to give it a chance and realise that different schools do have different policies. Afterall it is not a sn school. (There I go again, trying to convince myself, but not really believing it!!). You must be aware of how frustrating it is for our kids not being able to communicate well. My ds1 sometimes just crys because he can't even make his mum understand what he wants. I am soooo desperate to get him a fluent form of communication to relieve these frustrations
I can't tell you!!. I remember going back to ds1's "placement meeting" at ds1's sn school. My first instinct that I said over the table was that "until ds1 gets a form of communication, I am not happy about him being in a ms situation" I have never really stopped believing in this and it is eating away at me, even though I was pursuaded to give it a go for him. I suppose you must believe in your gut instincts. As for the suggestion for your son to go to deaf school, an interesting suggestion, one which would just about confuse him totally I think. Maybe your ed psy read a case study about it or something.....strange..... and a suggestion which I feel hasn't filled you with much faith in this ever confusing system

[Jimjams2]

magsi- again I recognise what you are saying. When ds1 was 4 we were told by the ed psych he oculdn;t go to special school- it was ms or a unit attached to ms (which I had been in a fe times and knew wasn't suitable). So we went with ms. Once I realised that it was a joke (after 4 terms) I rang the ed psych and asked her directly if she thought the school were coping- she said "no". Next I rang the SALT- same question- again "no". But no-one told me- and I had a child who couldn't talk.

My aim for ds1's adulthood is the same really- to find somewhere secure and friendly. I'm looknig for "adult school". I know the situation can be quite different for cp- ds1 has language as well as a speech disorder, and learning difficulties- but I do wish you every luck. MS wasted ds1's time, but I don't think it did any real harm or any damage to him- so I don't regret the experiment. It;'s just given me a clearer idea of what he needs.

[twoisplenty]

mymatemax - how is your ds2 doing? CP is so different for each child, i'm just curious. Really, I'm hungry to hear from other mums as there's no-one around here for chat etc. Our ds school is 1 hour away so there's no chatting at the school gates so to speak. Our ds1 is mobile with a walking frame, and gets around the house quite nicely. Stairs a big problem, we will have to move to a bungalow sooner or later.

[Jimjams2]

There is such a different atmosphere between special school and ms schools. I was actually dreading ds2 (NT) starting school in September because of the difference in openess. In fact we're lucky- it's a small school and has ended up being very open door. It's not quite the family that ds1's special school is, but it's friendly and open. (different ms school that ds1 attended).

[twoisplenty]

You know, this MN is really addictive! I ran a bath about half an hour ago but I'm still at the computer!

I must go and get my cold bath...it's lovely to chat to everyone, I'll be back maybe tomorrow, definitely monday!

[magsi]

Me too, ive a driving lesson in the morning (groan) speak soon x

[twoisplenty]

Still here! Sorry, just thought about something. Magsi, you were saying you wanted to find a fluent form of communication? Have you heard of the exhibiton Naidex? It's at the National Exhibition Centre, Birmingham on 22 - 24 April. It's free to attend and free parking (I think) and it's got loads of companies demonstrating everything from wheelchairs to sn bathroom to ... computer for speech. Good stuff and we will be there to look around this year.

If Birmingham is too far, maybe Naidex travels around the country? Maybe the website for the National Exhibition Centre (NEC) would give info?

[PeachyClair]

JimJams, did you ever look at the NAS owned homes? I only ask because I live next door to one and it is fantastic, really lovely (and they've offered me work experience too actually).

Magsi I can empathise as well. My son does have some words, but nto many and seems to be losing some of those. He cannot go to a SN school (basically we are not currently served by any SALT and so cant get the apperwork done) but I feel MS is not an option, so am telling the LEA to get their act together or we pull him and then they have to sort it in a year. I ahve a more able AS child in MS and that's a close enough call tbh, for me to risk it with a child who cannot tell me what is worng or how he feels about things.


he does go to a MS Nursery where he is happy, and two of the kids seem to have adopted him so he is secure. However the aprents are already complaining that the work the others get (they're 3 fgs) is too easy as it needs to be accessible, yet its way above ds3. Our MS is very academically focused, I dread to think what it would be like for him there lOL! So we have said- either SN school (would be a unit round this way- ASD or SALT controlled depending on LEA), part time until Christmas with the proviso that we can extend this if WE wannt; a year extra at the school Nursery (our favourite hut against LEA policy) or we pull him for a year- which we can do as he is Ajuly baby.

Seriously, you know your baby best so your heart and gut feelings will be right for him. I personally feel it is better to go to SN school and be cosseted then move up, than MS , fail and be shoved out- which is how it so often happens, sadly. I do think mixed is fgood- but only if all parties really feel confident about the placement.

[magsi]

Thanks Twoisplenty, we will deffinitely consider it. Sounds really interesting. Birmingham is only an hour away. Thanks again.

[mymatemax]

Twoisplenty - DS2 has mild spastic diplegia, he is doing really well. He walks unaided but falls alot & only walks v short distances. TBH his physical difficulties are much easier to manage than his emotional/behavioural needs. Happy to chat anytime!

Magsi, I'd be really interested to know what you decide!

[magsi]

Mymatemax - I think I have already decided - to keep him in sn school, but I am doing the "proper thing" and giving him a chance to see what he can achieve (for himself not anybody else!). After all, at the moment i think that two days in ms school and the rest in sn is a good balance at present. I guess I am just thinking forward to the future and him being in ms fulltime (if it was appropriate for him). I am trying desperately to make sure that I am not "wishing him NOT to succeed" in ms just because i think sn school is "safer" all round. I suppose its all about reluctantly letting those apron strings stretch a little longer than I would like them to. God this parenting is flippin' hard work!!!