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Here some suggested organisations that offer expert advice on SN.

They're not going to give me any help so is the early intervention stuff just b*lls**t

(24 Posts)
mummysaurus Thu 02-Jul-09 11:20:30

My ds 3.7 recently got dx of gdd with a delay of around 18 months in most areas. The paed who diagnosed him said he needed portage, salt and OT.

he saw a salt who gave me three exercises to do with him and may or may not include him in a group session for enunciation lessons

the ot waiting list is 18 months (thanks to all who gave me suggestions for private OTs - i'm following them up but still peed off that i have to find and pay for my own when it is supposed to be an entitlement)

he's now changed his mind on portage (apparently there is no specific need). I called and said but my boy can't put on his shoes for example and they said oh that would be for the OT not portage. When i pointed out there was no ot on offer they told me to speak to the pre-school. now preschool are lovely but they are not experts.

so apart from a few useful speech exercises I've got nothing apart from a sense of panic and time ticking away from my dx.

feel disillusioned and tired thinking of all the battles i'll have to fight and mostly lose in the years to come.

lou031205 Thu 02-Jul-09 11:40:11

You can self-refer to portage, I think.

Barmymummy Thu 02-Jul-09 11:42:32

Oh how frustrating angry. Have no experience to offer but just wanted to show you my support (not that it helps you blush

madwomanintheattic Thu 02-Jul-09 12:02:20

contact your local mp and ask them to investigate waiting lists for paediatric occupational therapy.

did the paed suggest that the delay would be 'caught up' or likey to require long tem intervention (i'm specifically taking about school/ nursery) - if a statement of sen is going to be needed you may as well formally request one now and fight for ot provision to be put into part 3. that way they have a legal requirement to provide it... wink it'll take six months at the shortest, but worth a punt if you can't think of anything else to do... (nursery would have to be involved and be giving additional support though - if he doesn't need additional support in the setting it wouldn't really be appropriate)

shoes are def ot though grin

madwomanintheattic Thu 02-Jul-09 12:04:20

oh, and e-mail ed balls about paediatric ot as well. it'll give you a chance to rant about 'early intervention' and 'every disabled child matters might matter if we can be bothered to fund the interventions, if not, never mind'...

mummysaurus Thu 02-Jul-09 12:20:03

thanks lou - i'll look into self-referral
thanks bm for support - it does help to rant!

mwita - when i asked if he'll catach up he said he didn't know by how much or when.

nobody(apart from mumsnet) tells you when and how to apply for help and that depresses me - you are fighting blind as they drip feed information.

I'm sure this has been asnswered many times before on this forum but how do i get the statement process started?

poor ds has a very lazy mummy who hates having to organise stuff like this (also trying to sell our flat and buy a house so feeling under pressure [pathetic emoticon]

AttilaTheMeerkat Thu 02-Jul-09 12:28:53

Re statementing process:-

You will need to write to the Chief Education Officer at your LEA and give them six weeks to reply. Note that date on your calendar. If they refuse to assess you can and should appeal their crass decision.

IPSEA are very good and there are model letters on there you can use:-

www.ipsea.org.uk

mummysaurus Thu 02-Jul-09 12:34:35

thanks atm - had a quick look at ipsea - excellent website. part of prob is that pre-school can't see a problem with him so definitely need to have another talk to them and see what they can offer. from sept he will be five days a week so they have opportunity to make a difference

madwomanintheattic Thu 02-Jul-09 12:53:07

e-mail mp anyway. they do need to know what waiting lists are like in their constituency in these days of targets lol... particularly for such a young, vulnerable and voiceless population...

Frasersmum123 Thu 02-Jul-09 13:08:25

I self referred DS2 to Portage, they assessed him and referred him on, but its definately something you can do.

I would get onto your MP too, they might e able to swing something for you. Your OT wait time is awful shock

mummysaurus Thu 02-Jul-09 13:16:15

OK mwita - just for you I sent this email!

Dear My MP

I'm writing to you in some distress as to the help available to my 3 and half year old son. Early this year we realised he wasn't just a late developer and sought help via our gp. Our son babysaurus was referred to a paediatrician at XXX Centre who told us that our son had global developmental delay and would need to see an Occupational Therapist and have help from portage.

We were devastated to have confirmation of our fears but comforted that we would have some help to help our son reach his full potential. He really is a super little chat - so positive and full of fun.

It was a blow then to be told this week that the centre has now decided that portage is not suitable for our son and that the occupational therapist has a 16 month waiting list. The centre has told me that they are considering how they can clear this backlog but could make no promises.

In 16 months our son will be at school and I feel so worried that our happy little boy won't be able to cope.

I feel lost in the system - I don't know where to turn to find out what help my son is entitled to and when. I know that much is made of the importance of pre-school intervention so am panicking that help will come too little and too late.

your intervention in this matter would be appreciated

your sincerely

mummysaurus

mummysaurus Thu 02-Jul-09 13:22:29

frasermum

on the self-referral wont they just knock me back as the paed in his wisdom has considered and decided no specific need.

sorry i'm being defeatist, i don't really know what portage does - I was just really looking forward to have a a professional work regularly with me and my son so we could see if he was making progess and so i can pick the portage persons brain on all the local help.

will have a look so i can come up with better example than can't put shoes on wink

have also finally called benefits line for dla pack. despite everything still don't really think I have it harder than the mum of any other 3.7 year old so not sure on what grounds i qualify but it's worth a shot as things are going to get expensive

mummysaurus Thu 02-Jul-09 13:24:03

just seen spelling error in my message to mp - chat for chap blush blush

Frasersmum123 Thu 02-Jul-09 13:24:51

Just dont mention it. I reffered DS and when they asked me why I was referring him I listed all the things - rigid play, no imagination, no socialisation etc etc.

feelingbetter Thu 02-Jul-09 13:25:20

Complain in writing - again and again. The Cheif Exec of NHS trust is heartily sick of me grin.
I complained over the waiting list for Portage and OT (currently 8-9 months so I already had it better than some) and would you believe it, they were just about to contact me hmm. But it did mean we were seen and assessed after 5 months.

You can self refer to Portage (my DS is only 1 and I'd say he gets more out of her visits than any other therapist). OT were vital in obtaining equipment for my DS and waiting for that was my real reason for complaint.

In the meantime, make a nuisance of yourself. I phoned them about a month after referral, then fornightly, to check how the waiting list was, were there any cancellations etc.
It is those who shout loudest more often who get the help, so keep on at them.

This website is very useful in finding out who's who and more importantly, what help you should be getting.
Best of Luck x

madwomanintheattic Thu 02-Jul-09 13:28:21

grin well done you! i'll be waiting to see if you get a response! grin

portage is really play-based and can be useful if you are struggling to find suitable toys etc/ work out ways to engage/occupy him (and fit in a bit of useful therapy too)
dd2 loved portage - but started school lst year, so we are out of that stage now.

whilst you are seeking early intervention btw - keep in the back of your mind that things do tail off once school hits (esp without a statement) so, pushing for help now has to be your priority...

mummysaurus Thu 02-Jul-09 13:51:23

thanks to all who encouraged me to contact portage

I just called them and stated my concerns and then buttered them up a bit by saying what great things I'd heard about their service (all true). I had to admit that the dr had decided against referring but she said that as I had self-referred they would make their own assessment of whether my ds could benefit.

there is a waiting list and i've not even got on it yet but this is progress of sorts.

wow - feeling dynamic - even tho my flat is a mess and i haven't done much playing with or cooking for my poor neglected 8 month dd while ds is at childminder. the v expensive organic chicken in fridge desperately needs turning into baby food but it might be a jar for dd tonight (again).

StarlightMcKenzie Thu 02-Jul-09 14:45:52

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jasdox Thu 02-Jul-09 21:16:24

Well done mummysaurus for ringing, I rung portage it was the best thing I did. I have become a const hassler, seems to be the only way.

If portage cannot come, maybe worth suggesting or seeing if they do drop-in sessions, some areas do (as i found out from another thread). Also as our portage has come to an end, am currently applying to the SEN panel for additional support at nursery, 1:1 for 1h a day, well with the nursery staff, better than nowt (as your ds is similar age to mine- should be applicable), however not sure where you live but the panel meet next week, our inclusion worker is making the application, could you ask your pre-school.

StarlightMcKenzie - how do you start the statement process. as no one is forthcoming on this application whenever i mention it!

My sis used to write to mp's regarding her ds and did work.

PeachyTheRiverParrettHarlot Thu 02-Jul-09 21:28:16

Statementing- use the template letters on the IPSEA website, you have to write to them to ask them to statement, they then decide whether to assess then whether to issue a statement and if so what for.

I used the letters.

Another excellent source of help is SOS!SEN for educational stuff (they ahev a website, it's sen as in lea SEN- whioch covers the MN SN as well)

StarlightMcKenzie Thu 02-Jul-09 21:36:47

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mummysaurus Thu 02-Jul-09 21:37:46

thanks starlight and jasdox

a quick update - it's been an interesting day. Portage boss lady rang and said ds is too old for portage as it is for kids not yet in pre-school. I was about to despair but she said i could get help from the pre-school unit who would do an assessment and tailor a prog with his pre-school. they will vist him with me three times to assess and then visit the pre-school to observe there.

so while i'd love portage at least it sounds like i'll be in the system which has to be a good thing right?

also have put a call in to one of the private ot's recommended by a mumsnetter so fingers crossed she hasn't got a long waiting list.

thanks for listening and for all your help ladies. will try to repay the favour as i get more knowledge of the SN world!

I'm so lucky to have a supportive dh. He came home to a tip with the food shopping I'd not got round to doing. then hoovered, put ds to bed and cooked while i went for a run. he's now clearing up kitchen and thanked me for all the work i was doing in seeking help for ds. what a sweetie he is!

lou031205 Fri 03-Jul-09 08:19:12

Hi mummysaurus, Portage is only for children who aren't taking up 5 sessions of preschool per week. DD1 was referred when she was 2.10, and only taking 2 sessions per week, but there was a 9 month waiting list, so she was doing 5 sessions by the time she got to the top of the list. But as you say, they have now gone into preschool to observe DD twice and there will be a further visit in 2 weeks time. She has also visited me (yesterday) to explain how she felt the preschool were coping, what strategies she has suggested, and some tips for home.

It really is fab as a service. I got more out of her in 1 hour than in the 3 visits I have had from SALT. SALT said "she will need help at school". REALLY?! Wow, so informative. Portage lady thinks that DD would really benefit from PECS type choice boards, now and next etc. Perhaps PECS itself. So useful.

StarlightMcKenzie Fri 03-Jul-09 09:14:43

Message withdrawn

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