Schooling - Help!! where to start?

[fnm]

Hi
I am looking for some advice about the whole schooling issues and if anyone has experience similar to mine if you can direct me in the best way forward.
DS is 3 in Jan, at the moment his name is down to attend ms nursery sept 2011. Prob is I am just so unsure about everything, he has so many needs, when I try and contemplate how things will work I get really confused. The whole SEN is entirely new to me which is why any advice you can give id appreciate.
In an ideal world I expect DS to go to ms with constant 1:1 however I know things will not be this simple. Ds has rare brain malformation, his needs are ?
Right hemiplegia ? needs help/reminding to use his right arm. Drops things, cant grasp objects properly. Cant jump, run much, falls easy, trips easy due to the r-leg.
Speech/language ? delayed in all areas, can put 3 words together although they aren?t clear full words. Understanding is delayed, doesn?t understand 2 word commands.
Visual perception ? although his eyesight is ok, walks into things, bangs himself, hurts his head, pead said his brain just doesn?t see what our brain sees which is why he trips, doesn?t see kerbs on street, walks too close to things.
Concentration ? very poor, consultant has told us when at school he will need someone with him all times reminding him and helping him.
Epilepsy ? has drop attacks, absences and tonic clonic. There is no warning, with ds he can just be playing and its as if his brain switches of and he thrown to floor.
However, he is a very outgoing boys boy, loves to play with all the other kids, loves his jigsaws (is actually extremely good at them) he can count to ten.
My main issue at the mo is re safety, I know educationally he will be behind but who decides if he need ms or sn?
I guess what I am asking is due to his needs am I being completely naive to place him in ms or at what point do I start looking round sn schools? Also at what stage do I start to apply for statement if its needed, and whos best to advise me if I do need one?
I also have his name down at a local private nursery, firstly to help him along with his skills before he starts nursery nxt sept but also it will give us a better idea of what to expect.
I am sorry if all this seems a bit jumbled up, mu head is all over the place. Hope you can make sense of it all.
Thanks

Has your papediatrician referred your child to the educational psychologists? In our area this got Ds access to the pre school education service who were a pre nursery service. They advised us about what to do as well as working with Ds. There may also be a parents Partnership service who will offer advice. Sounds like your son will need a statement and these can be done pre nursery if necessary or while the child is at nursery ready for school. You can ask for one anytime.
My advice is to look at all schools including special schools to get an idea ofhat is on offer - looking doesn't commit you and many have nurseries too. Another consideration is a dual placement - part time ms, part time ss. Didn't work for us but have seen it work well for other kids who went from ft ss to ft ms.
Once your son is in nursery you will get a better idea of how he will cope with ms but one thing to think about is:
if he is at ms.and needs constant 1:1. and is constantly behind in his work to the extent that he is not participating with the rest of the class, is it the right place? Sounds a bit harsh but maybe if someone had said that to us sooner we would have had a lot less stress!

Hi fnm and welcome to the SN Board.

from what you've described and from what the Paed has told you, it would seem that your DS is going to need longterm assistance at school and probably 1:1 support.

To obtain this level of support he will almost certainly need a Statement of SENs.

Ideally that support shoudl be in place before he starts in mainstream (if indeed ms is appropraiate). The Statementing process will identify all his needs, what support he will require and will also make a recommendationas to whether mainstream of special school would be the most suitable.

My advice would be to write immediately to the LA requesting that they assess your DS for a possible Statement. the process can take around 6 montsh to complete so it's best to start it as soon as you can.

Also, take a look at the IPSEA site www.ipsea.org.uk which has some examples of a letter to write to the LA requesting that they assess for a Statement.

You may also want to get yourself a copy of the SEN Code of Pratice which is the 'bible' that schools and LA should follow. It's really useful to see from that book what your DS should be getting and to use this information to get the best support you can for him.

Best wishes

I agree with WetAugust that you should be applying yourself for a statement as soon as possible. And also with starfish that it's good to start looking at special schools now - you don't need anyone's permission to do this, just call them up and ask for a tour.

SEN Code of Practice link. Read it thoroughly and then read it again. LAs won't always follow it unless a parent pulls them up on it by quoting the relevant sections.

Your son sounds quite similar to the child of another poster here - try to find Lougle on these boards as she may be able to help.

Hi Lougle here - will post, but wanted to say I have seen this, so you don't come hunting.

Hi fnm

My DD is 4.11 and has a brain malformation (widespread subtle cortical dysplasia). It was only picked up at 2.9 that she had SN, and we didn't get her brain malformation dx until she was 3.5, so you are ahead of where we were at your stage - well done!

DD1 had some concerns in infancy, but they were dismissed by HCP, she was late in meeting milestones, etc., walked at 23 months. Tt wasn't until she went to preschool that they approached us and said that they felt she was 'behind' and could do with some 'extra attention'. She started falling over for no reason a month later, and she has since been dx with epilepsy.

DD1 got funding for 1:1 around 8 weeks after starting preschool, and she really did need it.

She knows her colours, numbers, etc., but is a wobbly walker (blue badge, just been uprated to High Rate Mobility) and falls, trips, stumbles.

She has low muscle tone, and she has delays in all areas. She is ataxic.

We could have pushed for MS education, and she would have needed full 1:1 support, OT visits, possibly some physio visits, SALT visits, etc. However, the LA offered us special school, and we accepted. It is wonderful!!

Two things:

Do not wait for statementing to happen around you. Write the letter, get it done. This puts you in the best place to choose your DS's education - if I had waited for my Inclusion co-ordinator to do the statement, all the special school places would have been taken.

Bear in mind that for DD1's year, she is the only child who started Year R who went to Mainstream nursery. All the other children had been at SN nursery. So if you send him to MS preschool/nursery, you need to be prepared that as nice and kind and well-meaning as they will be, they are likely to have limited experience of children with complex needs such as your DS and my DD. That is OK as long as you are prepared to bang your drum and make your DS known to the LA SEN officers so that they don't forget him.

Thank you all so much for replying, think im kind of getting my head around it now. I will have a very good read of the SEN code of practice.
DS's OT came today, I mentioned to her briefly about statmenting and her response was 'they tend not to hand statments out much these days as much as they used to' do the hcp try to put you of these things? why does everything to do with sn have to be such a battle!!! Anyhow, OT is going to chase the CAF meeting up and see when the ed psch is going to do her assessment.
Just also to mention the MS school possibly want ds to go to is where dd goes, she is only yr above him. However this ms school doesnt have a great deal of experience with sn as far as i am aware.
Lougle - thanks for all the info, yes my ds and you dd do sound very similar. That is my big concern, firstly I dont want him forgotten about and i want to make sure he is in the right place from the start. I dont want to have a constant battle on my hands, yes i would love him to attend ms and get full 1:1, as much as id love him to have a life without all the sn but in reality that is not going to happen.
Do children have to have a statement to receive constant 1:1? and do they have to have a statement to attend sn schools? When applying for satements do you have to get supporting evidence and reports from proffessionals involved? Just that ds has recently been discharged from the comm paed and his epilepsy consultant has taken over, she has only seen him a couple of times so far.
Also hope you dont mind me asking but did you have to fight for dd to receive hr mobility? Just that i am considering applying for ds but cant make my mind up, he can walk, however, given the extent of his problems he needs constant attention when walking. Has spactial awareness probs, his brain simply doesnt see the space around him like we do- among all his other probs.
Guess i now need to do my research for local sn schools, and theres another prob, they all come under all different discriptions, when ed psch assessess ds, are they able to say if he is mild/moderate/severe learning difficulties? because ive got limited experience with sn,i am unsure as to which catagory ds falls into if any.
Thanks all again x

be prepared to be extremely assertive at all stages of this process as this way you will get the best for your ds. Its a long time ago for me now as my ds is 13yrs old but I still remember how absolute determination was the key to getting him the best education from the start. We have asd issues and so it's quite different but the principle is the same. We have over the years gone for a mixture of provision beginning with private nursery then ms for primary but with full support and now specialist provision with access to mainstream with support in secondary school.

The backbone for this has been a very early statement (advice and support from IPSEA essential in whole process and getting wording right on statement as it is a legal document and the blueprint/ passport for entitlement to support, therapies etc.)

I wish you so much success with this and hope you will find like I did the support you will need from a few wonderful people (usually who have been through the system themselves as some professionals do have children with special needs and they tend to be fantastically supportive). Parent partnership were brilliant including offering free legal advice pre tribunal which was so goo the LEA backed down!

My advice would be to really research the financial implications of whatever provision you think is best for your child and make the case on cost alongside your other arguments. It worked for me in a way no other argument did.