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

Hi,

I don't often post on Mumsnet but just wanted to say hello and let you know I know what you are going through. My DD also has severe communication problems. She started MS school with no language at all. She uses Makaton and a computer aid, she also has a fulltime carer.

I just wanted to let you know that she is so happy at school. She has lots of friends and so far has not experienced any bullying. It is difficult and you really do need good carers who can enable your child to join in with the others and help the communication process!

I do agree that not being able to talk is a huge disability but just wanted to share my experience of a hopefully, sucessful mainstream placement!!

Good luck with everything.

Take care.

Hi there wire.
Its great for your dd that her time in ms is working for her. I do think that it is paramount that the childs one to one carer is key in the "experiment" working. It is really lovely that your dd has fitted in and very encouraging for me to read. I have had the idea on many occasion for "makaton" to be introduced simply to the other kids as a subject in my ds1's classroom. Maybe it would help them to relate to him more, and it would be interesting for them i'm sure. I think I might be writing (yet another) letter suggesting the same.

Hi Magsi,

Sorry I forgot to add that in my post but the Makaton teaching is something the school has done since Reception. The speech therapist usually comes in every other week and spends about 15 minutes with the class teaching them signs. She usually concentrates on signs such as " can I play with you?" and other easy questions.

They also watched Something Special in their T.V time and have a poster up of makaton signs. Another helpful thing was to take out my DD and two other children and do sessions using the electronic aid which made it easier to have conversations.

The children loved learning the signing and are definately better at remembering the new ones than me! My favourite moment was seeing my DD signing to another child "play" and them knowing exactly what she wanted!

Hope this helps.

FANTASTIC!!! . Right, I am now on a mission to make my ds1's mainstream teachers "see the light" and incorporate some of what your dd's class has done for her.......wish me luck

Magsi
I think it is becoming more common for Makaton to be taught to all the kids ds1(nt) school, all use makaton there are a few kids at the school with language problems, all the teachers use it & the nursery that feeds the school also use it, its just part of the language of the school. All of the kids really enjoy it.
I'm sure your school wouldn't mind a suggestion letter, constructive critisism is healthy isn't it!!

Wow!!! Wire, you are so lucky! I agree that children love makaton, I have taught my ds friends at Beavers and they loved it. What a fantastic school to incorporate all of the steps to integrate your child with the class.

Magsi, I'm still thinking about what you said about a professional saying that your ds future is not in sn school.

To gain a better idea of the future, we looked at the ofsted reports on the net to work out the nearest and most relevant special secondary school, and visited the school. Our ds was only 6 yo! The 2 schools we visited were very different. The first one had children who were mainly in wheelchairs and the concept of the school was to teach life skills rather than academic subjects. The other school was full of happy, mobile children, some in wheelchairs, some walking. Some classes looked just like a normal secondary school. Some classes were for children with learning problems using all sorts of ways to help the children learn a subject. Many children take GCSEs, some do not.

HOWEVER the headmaster said that times are changing and now more severely disabled children are entering secondary school, the more academically able were at ms. I wonder if that correlates with your professional person saying that your ds was not for sn education?

Also if your child finds a good communication aid, and makes one or two good friends, then surely that makes for a happy school life?

As I'm writing this I'm aware that I seem to be changing my opinion on ms over sn schooling, but my child has severe learning difficulties - it sounds like your ds does not.

Sorry, I meant to say the more severely disabled children are entering special secondary school, the more academically able were at ms.

"HOWEVER the headmaster said that times are changing and now more severely disabled children are entering secondary school, the more academically able were at ms. I wonder if that correlates with your professional person saying that your ds was not for sn education?"

I wonder how many last the course. From observing it seems to me that some severely disabled children do well at primary- but secondary is difficult. I bet they don;t keep figures! But they should......

I think if I had to choose a school for a disabled child again- I'd always go with the one that was going nurture self-esteem- as I do think feeling good about yourself gives you the best chance in adulthood. That may come from special school, mainstream, or a combination, or different schools at different ages, but I guess that' what I would be trying to figure out!

Jimjams, Twoisplenty, great thoughts and ideas, its so confusing wouldn't you agree. took ds1 to his ms school this morning and he was a little anxious (as he always is) after the half term break. One little boy came up to him and said "hi, do you want to play with us?" but ds1 just clung to me, I think it was because they were all charging round the playground (something which he can't do). It was really nice though and good to know that some of the kids approach him. I think that teaching some basic makaton signs would encourage more kids to approach him, afterall, its giving them the "tools" to communicate with ds1.

jimjams - it was the headmaster of the special school we visited that was just telling us that times are changing. We feel sad that special schools for physically disabled are specialising in more severe disabilities, because our son is in the middle - not profoundly disabled, has a lot going for him, but has physical problems (uses a walking frame etc) and has learning problems, but again not so severe he can't learn, he can learn but slowly.

I certainly understand magsi that the more you talk and gain others' opinions, the more confusion there is. We visited one school specialising in conductive education and the head there was shocked to learn that our son was not using walking sticks but instead using a walking frame. We were encouraged to try sticks. We were excited about this until we spoke to the hospital physio who wasn't convinced about sticks and didn't feel he would ever be ready... He has sticks and we are using them in the house and a little bit at school, because the school is happy for him to try.

...groan...

Anyone fancy a simple life?

Just curious magsi, does your ds walk well? Or use any walking aids etc?

It is hard, but I think when you've got it right you know. When ds1 went to his new school I was told by so many people that I didn't look ill anymore!

I'm still a stone underweight!!

twoisplenty - yes my ds1 can walk, although it has been a very long battle over about three years. He has cp in the form of a severe right sided hemiplegia. This means he has no use of his arm and his leg is not very good on the right side. He also has visual field problems in his afected side which makes him even more wobbly. I remember right back in the beginning when he was first in standing frames and used to spend many an hour stood playing games with a tray attached in front of him. The support started right under his arms round his chest and gradually, as his strength and bones got better, the support was moved down, so in the end he only had support under his knees (very worrying when you had visions of him falling forward) but it was quite safe. We were "under" the supervision of the "Movement Centre" in Oswestry Shropshire which is just by the Orthapaedic Hospital there. They are a private practice, but our physio suggested it and our paed signed for a 9 month course, so we didn't have to pay. After two 9 month courses (visits every 6 weeks) ds1 started to take his first steps. I can remember it like it was yesterday and his look of triumph when he walked from the fireguard to the sofa. I don't think me and hubby came down from the ceiling for about a week!! and then there was no stopping him. He does however still fall over quite a bit and thats why at ms school in the morning madness of the cloakroom, we hang back a bit, otherwise he just freezes on the spot when kids rush past. As for weight .....pass....(as she reaches for another jammy dodger!!!

Re the MS secondary issue, I work in a SN school and we always get a couple of kids at Yr10 and a couple more at yr12.School only has 80 kids so 4-6 can be quite a lot.

Hi Nikki. Do you mean that some children who have been through the ms route, can't cope and have to move into special school? If so, are they happy to be in special school at yr10 etc?

Yeah ms then move to sn.
Happy ? most have been segregated a lot anyway, had one who had been in a room more or less on his own for 5 years.One particular boy changed so much in 3 months with us parents regretted him being in ms (and he is very able compared to majority) he started telling tales of been bullied too .Don't want to put people off but just go in with eyes wide oopen!

Hi Magsi, thanks for reply. It was a lovely full answer to my mobility question! I shall describe my ds too! We took a different route, we found "School for Parents", which was supported by Scope. It was 1 2 hr lesson based on conductive education. This was when ds was 2yo. We thought it was a common sense approach to cp, so we found a conductive school. It is marvelous! Its an hour's journey from home though, so we are planning to move house (we need a bungalow) a bit nearer. He started school at the tender age of 2 3/4. He did 3 full days per week. Two weeks after starting full time at the school, I had my daughter. Perfect timing!

Our ds uses crawling as his method of moving around the house, but I am getting strict now and am insisting he finds a better way, either his frame or sticks or by walking around furniture. He has botox injections every 6 - 9 months, and they're really good. His muscles aren't as tight as some cp children, but he will probably never walk unaided. It's not the end of the world, but lack of speech (as you know) is just a cruel blow to him and us.

Nikkie, you may just have confused Magsi even more!!! Personally I never wanted our ds to go ms, BUT our council closed ALL the schools for physically disabled. So ds travels to the next area, 40 miles away.

Interestingly, today my dh called the council to discuss taxi arrangements. We thought that our ds travelling 40 miles to school was excessive and must cost a lot in travel. The council said that plenty of children travel much further, and can start out from home at 7.15am to get to school...that's just disgraceful in my eyes.

Magsi is talking reception age though.Its totally different at this age kids are so accepting.DD1 has a lad in her class who didn't have much speech and they all accepted him as Tim.
As a split placement in theory MAgsis ds should be getting the best of both worlds, the socialising in ms and the specialised teaching in Sn .If he/school/ta are all happy with the inclusion there shouldn't be a problem.I would ask for some inclusive games to be played in small groups communicating so the other kids get used to the different methods.

Magsi-Is his 1:1 from the sn school or the ms one?We(Sn school) send our own TAs out on inclusion which then feeds back to the sn class teacher/parents easily.

Hi nikkie

My ds1 has had 1:1 from the beginning of last term with a helper from his sn school and the newly employed helper from the ms school. The sn helper will stop coming in when the ms helper is properly trained up. I have no complaints with this set up and feel like the ms school are doing everything right so far. I have this morning asked his teacher if some basic Makaton could be included in lessons to teach the other kids a few useful signs to use with ds1. She said this was a good idea. Its all good. And he went with a big smile on his face this morning.....bonus

Thats great , if he is enjoying it carry on!
Sounds like he is well supported.Try to speak to Teacher/ta about getting more feedback as that may help you.