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Here are some suggested organisations that offer expert advice on SN.

I cant shake the feeling that I have made a huge mistake about ds education.

(16 Posts)
staryeyed Tue 04-Aug-09 17:33:41

He is 4 has ASD and is starting reception in a special school in september. Im now not sure that its really where he should be. It is the best in terms of what the borough has to offer but Im not sure he will progress much if at all. He hasnt in his specialist nursery setting where he had group salt and OT music therapy and one to one sessions. Since starting nursery he has learned no new skills, bar climbing the climbing frame has learned no new PECS vocabulary, all he has gained is experienced being around other children. He is capable of learning. Before starting nursery he was able to draw shapes, recognises numbers 1-10, match letters, inconsistantly write his name, sequence etc but hes has made no real progress. And has been given dubious reports about his progress. His teacher was supposed to be an expert teacher (I now have serioous doubts about her "expertise"). Anyway the next school sounds good again in theory but since we named this school on DS statement I have reconsidered (due to dealings with school since naming). I feel very uneasy about our choice now and feel I am letting Ds down. He is completely non verbal has very limited understading of language and the world around him. He learns new skills and if not practised can just as easily lose them. I worry that he will just be left to float along not really learning anything. He needs so much inoput to motivate him in learning unless its something he loves anyway- ie numbers and shapes and letters that not to mention the triad os impairments where he is severly delayed in all parts. Everything is screaming ABA at me but we tried a home programme , spent a fortune setting it upand realised our budget wouldnt stretch to anything near the length of time it would take for DS to make any real progress (and we had issues with the tutor) so we stopped.

HelensMelons Tue 04-Aug-09 18:46:51

How stressful staryeyed.

It sounds like you are dissatisfied with his placement in the specialist nursery setting -is his reception in the same school? Will he have different teachers?

Can you meet with his new teachers and discuss how you felt his last school year went to get some reassurance and advise them of your expectations?

sickofsocalledexperts Tue 04-Aug-09 18:51:56

Staryeyed, I can't help with the legalities of when you've named a school on the statement, but I'm afraid I do agree with you that it sounds like ABA might bring him on more than special school. I am biased as I had a very bad experience of a special pre-school - where he learnt precisely nothing - and a very good experience of ABA where he has learned a lot. He's now in mainstream with a helper and is reading , writing and using a computer. What about calling IPSEA to see what your legal position is?? To be honest with you though, a lot of my DS's academic skills were ones that I taught him, painstakingly in the evenings - using Jolly phonics DVD and Baby bumblebee. ABA does not necessarily focus heavily on this stuff, unless you find the right tutors and set your own agenda. Maybe you can do stuff with DS too?

Phoenix4725 Tue 04-Aug-09 18:52:08

if it helps stary im having same fears about Ds who is going to be starting ms am worried how they will teach him , GDD , 2.7,gross and fine motor control problems understanding and non verbal even though he has f/t 1-1 .But then the sn school was not right for him either

rosie39forever Tue 04-Aug-09 18:53:35

Staryeyed you are exactly where i was this time last year, my non verbal dd due to start her special school me haveing major what if doubts, its a terrible feeling. One year later with dd about to go into class 2 i am so glad she went there its been amazing, the school is brilliant, shes in a class of 6 students with 4 members of staff, they have a total communication enviroment and the staff, even the lunch time staff know how to sign and use pecs, dd is a different child to how she was last year and absolutely loves going to school. Its important to bear in mind that children with asd dont learn in a linear fashion, and in dd's case she goes ages without seaming to make any progress and then she will have a period when there's loads of progress so dont be disheartened if your ds seems to be stuck this will change. My only advice would be to give it a go, its not forever and if it's not suitable then have a rethink, a lot does depend on the quality of the school and its staff and its a lot harder to swap from mainstream or private education to special school than the other way round.

PeachyTheRiverParrettHarlot Tue 04-Aug-09 19:14:37

Hmm, you know Moondog on here tonioght is a gem with ABA professionally, maybe worth getting a few hints from her whilst she's here? She reads SN.

I would personally give the SNU a shot. Ours is amazing and copes with children who are very severelya sd right up to kids who have triad but also are on the 98th centile academically.

Have yopu looked at funding for ABA- LEA (have heard it does happen, though suspect in most cases flyi9ng pigs far more likely), grant or direct payments?

Honestly i'd give it a shot- it only takes one good teahcer and they can jump miles, whatr ds's last 1-1 and his teahcer now achieved far outeighed anything I could have done for him (like yours he only learns what he likes- so he can do maths but I've never managed to get him to draw anything or write at home, though school this year got him writing a bit and reading shock)

cyberseraphim Tue 04-Aug-09 19:35:29

I think your fears are normal. DS1 starts school in 2 weeks and I have no idea if it will work out. I had a bad experience at pre school too so that does not help. But I'm going to give it at go and not try to build up fears about disasters that might not happen. I do ABA/VB on a much more limited basis than the the '40 hours' and it works for us. So I have the confidence that at least all is well in the home setting. I get the feeling that might be what you need - to have someone on 'your side' who can help you argue your DS' case. Definitely agree with the 'one good teacher' rule - so wait and see before you judge.

anonandlikeit Tue 04-Aug-09 19:46:04

Hi Stary, i can remember those feelings when ds2 started school (ms).
Do you know what teaching methods they use at the school & how they will measure his progress, if not can you find out, would it help settle any of your worries??

I know it helped me when I understood the ethos of the school a little more & i got to know them.

sphil Tue 04-Aug-09 21:32:31

Oh Stary - I had exactly the same experience. DS2 got a place at the special school before we'd really got into our ABA programme (though like Cyber, it was 'ABA-Lite') and although I thought it was a great school (and still do) I had more and more doubts as time went on about how well he would learn in that setting, as the ABA programme had shown that he only really learnt through intensive 1:1, prompting and reinforcement, rather than TEACCH type methods, which was the approach used mostly by the school. Also, the class he was in was, at the time, composed of children who were(like DS2 at the time) not at all interactive with their peers and minimally verbal. He spent two terms there part-time (with a part-time home programme) and we then transferred him to part-time m/s (with the full support and encouragement of the special school)on the understanding that he would respond better to a full-time 1:1 and to children who would model language and social behaviour to him.

The original idea was that I would teach ABA methods to the 1:1, who would then use them in school - they seemed open to this at first but it hasn't really worked out in practice, as they refused to use edible reinforcers, which were the only things he would work for at the time! I have managed to sneak quite a lot of ideas in through talking with the 1:1 and the home-school book, but I would say that, on balance, he probably hasn't progressed as much academically as we'd hoped.

His social skills have come on hugely though - from taking no notice of other children at all, he now has a small group of real friends who he recognises, responds to and initiates contact with. He also interacts with a wider range of adults and his sensory tolerance has improved enormously.

Have you thought about a part-time programme at all? You are allowed to 'flexi-school' if the head agrees and you can prove you are engaging the child in a valid education off-site (though they never inspected me!)

Or, if you feel after a while that the special school isn't right for DS, what are the alternatives? Nothing is set in stone, and if there is a viable choice, you can change things if they're not OK.

I found I had to make a huge leap of faith to send DS2 off to school and it took me a long time to relinquish control (I still haven't really, am in there all the time and am sure they've got a picture of me on the staff room wall they use as a dartboard grin) But atm, though it's not perfect by any means, we've found the 'best fit' for DS2, even if it's taken a long time ( and MUCH soul searching) to get here.

staryeyed Tue 04-Aug-09 22:58:37

I ddi speak to the new teacher whihc gave me some of the doubts that I have (PECs use- another thread). We will also have a transition meeting and I will discuss these things but so far what made us chose the school wasn't quite what it was made out to be- sound lovely but really just wishy washy stuff that doesn't mean much at all.

Peachy we originally looked into getting LEA funding for home programme but our LEA are bxxxxxds and would give us a really tough fight and a legal battle we couldn't afford. I'm trying to think outside the box in regards to funding some sort of programme but haven't thought of anything as of yet. We also looked a the ABA school which is excellent but again our borough would not fund. I was doing ABA stuff with DS and it does work with him really well but now I have small baby and dont have the time or energy to do it the moment.

They use the TEACCH approach which I don't think that much of. Really when we chose the school there wasn't really any alternative- he wouldn't cope at all in mainstream even with a one to one so that left a choice of staying where he was (not an option - no places and so far not up to much anyway or 2 special schools (only one of these really suitable for DS)

Sphil I can completely relate- I think I have a bit of a reputation for being difficult. The thing is I dont know if there are any alternatives. Im so tempted to home educate ABA style but realistically -finance wise- I need to work and it was very very draining when I used to do it before.

moondog Wed 05-Aug-09 07:12:39

I'd go as far as to say that if you are interested in measurablefinely calibrated learning for kids with severe ASD, most places are useless unless they have a highly trained [in the same approach] set of staff who work very closely together and use evidence based practice and databased decisions. You don't have to be arocket scientist to know that this isn't generally the case, especially when you bear in mind that most SN class and 1:1 assistants get very little training.

Thisis one of the reasons why a home or school based ABA programme is infinitely superioer. It ticks all the boxes above.

That's not to say that the staff and the school won't be nice and warm and friendly, nor that your child won't have lovely experiences of the sort he might not get elsewhere or with the family. This stuff is important and valuable too. Kids in special schools do some amazing things that they wouldn't be able to do in m/s schools.

You just have to make thechoice of which one you value most highly.

sphil Wed 05-Aug-09 18:19:20

Sadly my experience of both special and m/s (tho only 2 schools, I know) has led me to agree with Moondog. The trouble is, when you've done an ABA programme at home it makes a lot of what they do in school seem very wishy washy and in a way makes you question their methods more than you might otherwise have done.

However,like you, I found running even a part-time programme with DS2 to be completely draining and I didn't have a small baby! We couldn't afford a UK consultant, so did the distance programme with Growing Minds, which works out a bit cheaper (or did, when the exchange rate was favourable). That meant that I did all the planning, preparation and recording as well as some of the teaching. It was taking about three hours each evening - DH was cooking and washing up, as well as doing most of the washing, ironing etc - after doing a full day at work. It has given DS2 some great skills - ability to take direction, better concentration, ability to imitate and request (both biggies) but after two years we had to question whether the amount we were putting in was (and I hate typing this) 'worth it' in terms of DS2's rate of progress. At the same time my mother fell seriously ill and so last Easter we made the decision to stop the home programme and send DS2 to school full time. We still use ABA methods all the time, as well as Floortime techniques, but it's not really a programme as such, though I do plan what I'm doing with him and record outcomes to a certain extent.

I still don't know if we've made the right decision, but his rate of progress doesn't seem to have slowed - it's still slow!grin
He learnt a lot of stuff in the programme, but he's only ever used it in the wider environment if he's motivated to do so - and that continues to be true now. The one thing I regret is that we don't do the fast trials any more, as I do think this helped his attention span and focus a great deal.

Stary - what I would suggest is that you make as much use as you can of the home-school book. Find out what the school is doing with him and try to find ways to support and reinforce at home. Tell them what you're doing (I have cultivated a convincing air of humility on these occasions wink) and talk a lot about how important it is to maintain consistency between home and school. In general (despite my previous flippant comments) I think teachers welcome involved parents as long as they don't feel undermined.

PeachyLaPeche Wed 05-Aug-09 18:59:11

A tip on home school books: extensive use of ours is written into ds3's statement. teachers assume thatr ds3 will tell us about his day as technically he has the words to do so )although with marked delays in both areas still) however he doesn't communicate info between settings so we can't hope to get anything out of him.

After hit and miss links with MS we eulogised about a successful usage with a new 1-1 at a review and LEA wrote in that must continue- has been a big help.

sphil Wed 05-Aug-09 22:54:51

Yes, good point - ours is written into the statement too. And I find eulogising is a very good way to get things accepted!

moondog Thu 06-Aug-09 09:27:25

The point about the home/school diary is vital. So many parents do not write in these [I'm not sure why-canthey not be arsed or do they feel that it is for the school to write and not vice versa??] and staff find it really demoralising.

Write anything and everything and not just negative stuff re say, tantrums and sleeping. Tell them what the child ate, who came to see you, what they said/how they reacted, any little bits that will allow them to get a 3D picture of your child which in turn provides a great base for conversation esp. with a child with limited communication skills.

Also, respond to what they,the staff say, even if just a

'Wow, painting today sounded like great fun. He loves doing it at home'

or

'You must all be looking forward to half term'

Get a ynamic dialogue going. Every day.

eg If they know Grandma came to stay they can ask more about that.

Also it clearly conveys the message that you are an on the ball involved parent and whether you like it or not, those are the people whose kids are given more attention.

PeachyLaPeche Thu 06-Aug-09 11:56:41

Sphil- eulogising about the (doubtful) abilities of the SEN lea team to their manager got us school transport

Sad but very true pmsl

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