Is this unreasonable?

[Lillypond]

I heard today that DS will have to attend a multi-disciplinary (sp) asmt, to discuss how best to support his needs. The next available appointment is 25th April . Am I being unreasonable to think that this is too long to wait. I've been told that DS doesn't need portage because he is at nursery, and the only help we're getting is a block of group SALT that will start in Novemeber.

Things have been really hard lately. DS had an accident at nursery where he got his head caught in a climbing frame. He didn't call out to anyone for help so I don't know how long he was stuck there for. When the teachers found him he was really traumatised. It really worries me that he could be in serious danger and no-one would know.

That's a long time to wait! Does he have an IEP at the nursery?

The portage system seems to vary from place to place because ds1's lasted until he started school, and ds2 still has portage even though he has now started at pre-school.

What does the Area SENCO say? Are they happy with this arrangement? It sounds like madness IMHO - especially as we are always hearing how early intervention makes all the difference.

CT - he doesn't have an IEP, but I'm hoping that after his little incident on the climbing frame that the school will start to take more notice. The teachers were obviously worried as they removed the equipment the next day and got the senco in to see him. Unfortunately the senco's visit conincided with a fundraising walk so she only got to watch him for 10 minutes. The teacher did express concern that he didn't call anyone and does seem to be accepting that he has problems now.

Apparantly the reason we are waiting so long for his next asmt is because a social worker and Paed. have to be present, and there is only one day in every month that their diaries don't clash. Other professionals will be invited as well and if they can't attend in April the date will have to be postponed even further

Have portage refused you directly or is it just the paed's opinion that you don't need it? It might be worth contacting them direct. We get portage and DS2 is at preschool. In fact for a while the portage worker liased with the preschool over setting objectives etc.

It is really hard to have to wait so long.

Private appt's are out of the question unfortunately, but if we could afford them I wouldn't hesitate.

Saker - Portage haven't directly refused us. I contacted them a while ago and they told me to get back in touch when DS had a DX. Once he had a DX I called them and they said he doesn't really need it as he's at nursery. They didn't actually refuse us, but they made me feel like it wouldn't be of any benefit.

I really want someone to speak to the school on our behalf and get them to understand DS's difficulties. I'm having trouble geting them to understand that DS's language problems are more than a speech delay. DS's pronunciation is poor and I don't think they are looking past this at the bigger issue. I didn't know about this asmt before today and I believed that someone would be contacting his teacher to explain DS's DX. Now it seems that this won't happen until the asmt.

I'm so pissed off. I've never been so overwhelmed about anything before in my life, and it feels like I'm getting no help at all.

It is hard especially at the beginning and I found portage really supportive with all this. If you could face it I would try ringing them again and ask again. Tell them what you have told us. I really don't think that whether he is at nursery should make any difference.

If you feel ready you could see if there are any local groups in your area where you could meet other parents for support and advice as to how the system works in your area. We go to "opportunity group" which is a special needs playgroups for children with all sorts of needs and there are carers to play with the children so you get a break and a cup of tea. I think that Opportunity groups exist around the country. Your health visitor should probably know.

What's your health visitor like, can she offer you any assistance with getting portage etc?

Hi Saker - I think i will ring them again as I get the impression that DS is entitled to their help and they haven't outright refused.

I haven't met our new HV yet, as we moved area and had to change surgeries a few months ago. The whole change over is causing untold problems. I have told all the people involved with DS countless times about the changes but still everything comes through with the wrong surgery details. We are at a clinic at the moment which is totally inappropriate to get to from our new address, but when I asked about changing it to the one down the road I was told that it would delay appt's even more.

BTW, thanks for the advice. You gave me a lot of good advice about portage when I used to post uner 'jenkins88', which made me contact them in the first place. How is your DS BTW?

have you conatcte your local LEA about getting a parent partnership supporter? they are basicly people who can come to meetings with you and lias with the proffesionals on your behalf. they have been through the system many times and know what can and cant be done basicly.
when we were first trying to get George's statement they were fab.

Thanks for asking Lillypond, he is fine really. He is very happy generally and everyday I feel he does something new that he hasn't achieved before - you know only small things but he is progressing slowly. I am very interested in trying some RDI with him (have you seen this discussed on the other threads). But I still haven't really sorted out how to get started. We are hoping he will start at a special unit attached to a primary school in February. I still worry about the future but I feel we are getting along okay at the moment.

Good luck with portage. Whereabouts are you if you don't mind me asking?

Madmum - I've never heard of Parent Partnership, but it certainly sounds useful. I'll look into it. Thanks

Saker - I haven't read the RDI threads yet. I'll have a look in a minute. The little things are so important though, aren't they? DS has started saying his teachers name and it really means the world to me. I hope he gets his place in the unit in February. Is it a language unit or something else? There is a language unit attached to DS school and I'm really hoping that he'll get a place next September. Although I think his autism DX might make things a bit more complicated.

We're in SW London/Surrey. Whereabouts are you?

gosh april is a ridiculous amount of time to wait!!!

Lillypond

It's not specifically a language unit - it's called an infant assessment unit. Part of the point is to get an idea of the child's problems / educational needs. They can stay a maximum of 3 years and then either go into mainstream or special school from there, depending which is thought most appropriate. They have a SALT go in three times a week plus OT and there are only 10 children so there is much more individual attention.

We are in East Cambridgeshire. Services round here are generally not too bad. We haven't had to wait long for appointments although we waited a long time for any actual speech therapy.

If you feel up to it I would advise starting to look into the unit / statementing etc for next year. It takes a while to sort out.

The unit sounds excellent Saker

Up until now we really haven't had to wait very long for anything. SALT took about 6 months to get started, but I know others have waited much longer.

I'm dreading starting the statmenting process, but I think it's the right thing to do now. He'll need one to attend the language unit next September anyway, so I might as well get on with it. Has your DS got his statement yet?

We got turned down for statutory assessment although I suspect that is partly because we almost certainly have a place in the unit. You don't need a statement to go there. So I'm not appealing or reapplying for the time being. I will reapply if the place in Feb falls through.

Do you have to have a statement to access the unit at your ds's school?

Do you have a preschool support team to help you with all this?

I really don't understand why it should be so difficult to get a child with SN statemented. I'm new to all this, so appologies for the stupid questions, but what does a statement acually do? Before I found this board I just assumed (stupidly) that DS would be statemented when he started school because he isn't NT. I still beleive that that's the way it should be.

I'm not sure now about whether he needs a statement to get in the unit. I think I was just assuming he would need one, or maybe I read it somewhere. No idea now. I've never heard of Preschool Support. Do all schools have them?

Sorry for the daft questions. I really am out of my depth with all this.

Hi Lilypond,

A statement is a legally binding document reviewed yearly outlinging your child's special needs and how these needs are going to be addressed in terms of support. There are six parts to a statement. Various professionals who have/are seeing your child e.g paediatrician, speech therapist etc are asked to make a report.

You should also be aware that such documents can take six months to be drawn up from the time the LEA agree to assess. It is a slow, drawn out process which can be both frustrating and difficult to go through.

It is usually down to the parents to carry the burden re asking for a statement as such people have the right to appeal if the LEA refuse to assess (if they assess then a statement will follow). A school may support your case for a statement but its down to you ultimately to fight for this.

Have you spoken yet with IPSEA or looked at their website?. Its well worth doing. They are very good when it comes to helping parents get the special needs provision their children both need and deserve.

www.ipsea.org.uk.

My best wishes

Lillypond, You have had excellent advice fom both Saker and Meerkats, so I wont add anythng else apart from good luck.Dont worry about asking questions about statementing etc. Most of us have had loads of experience fighting the system to get our childrens needs addressed.
One good item that you might want to get is The SEN Tool KIt....its free and in the kit you get all the literature you need to see you through the statementing process. There is also a copy of THE SEN Guidelines that all LEA's have to adhere to....although many try and interpret these guideline to suit themselves!!!

Like I said its free and you can get one by telephoning the DfES on 0845 6022260 and asking for copy reference DfES/581/2001. You need to ask for a copy of The SEN Code of Practice and The SEN Tool Kit.

Good luck.

Network81 may also be helpful. I understand they provide a pack called "Disabled - education and disability - a parents' guide to rights from nursery to university".

I don't know how it works in other areas. We have portage but there is also a preschool support team. The worker who is assigned to Ds2 has been involved in applying for funding for 1:1 at preschool, applying for a statement, applying for a place in the unit and setting up things like assessments with the educational pyschologist. We were passed onto her through portage. She has been very helpful but I don't know if this exists in all areas or just round here. You should also have an area SENCO who can advise you and it might be worth asking them about preschool support.

I know it's really overwhelming and I hope I'm not blasting you with too much information. I just feel that if you could get portage and some kind of educational support in place it would take some of the burden off you.

Hi lillypond.

teh advice given has been excellent and i doubt there is anything i can say that would be of any more help.

where abouts in sw london/ surrey are you?? if you dont mind me asking.
i was based in Merton before and am now in Elmbridge.

Meerkats, Jayzmummy and Saker - thanks so much for all your good advice. I'm going to print this thread out for guidance.

Saker - No, you're not making me feel overwhelmed. Sorry I made it sound like that. It's the system that is getting to me. Why does it have to be so complicated, and why is it such a battle? Thanks so much for all your good advice and suggestions. I'm going to try and relax over the weekend and make a start on this on Monday.

Madmum - I'm in Merton too - Mitcham to be precise. Whereabouts were you, if you don't mind me asking? Imagine, perhaps we were neighbours

how bizaar!
i grew up on Phipps bridge but then moved to Raynes park.

i was in west wimbledon till i moved here in february of this year.

Madmum - How strange

DP grew up on Phipps Bridge Estate as well. I lived just round the corner near the White Hart pub. We've now moved up in the world - we're on Pollards Hill estate

How old are you? (Hope that's not too nosey} I'm 29. Just wondering if we were at school together.

im 25.

i went to Benedict primary, then Park house middle ( my parents were trying to make me posh i think lol) then Ricards.

well i say i went to ricards....what i mean of course is that i was sent and i was occasionally seen hanging about outside the gates.

LOL at 'occasionally seen hanging about outside the gates'. I've never heard of Park House - it sounds very posh. We must know some of the same people.