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Is it worth fighting for this???

(21 Posts)
meea Mon 17-Jan-05 18:48:40

Been to ds2's playgroup at the local cdc this morning.Were taken on 1 side by his portage worker and told that because he is attending more than 2 sessions at nursery he can't go to playgroup anymore.The most annoying thing about this is that he has been doing 4 sessions since last september and I have lost track of the number of times I have told her how many hours he does at nursery.I just feel like screaming my son gets absolutly nothing, from April he will have no support at all apart from me.It just seems so wrong that because we have chosen to pay to send him to a private nursery so that I can have a break he is not allowed to access the group that is best for him.
I also made things worse by making a fool of myself by having to walk outside in tears.
Don't know how other people feel but somedays it feels like things all going against me and I wonder if there's any point.

FineFigureFio Mon 17-Jan-05 18:50:47

we were allowed to claim the free vouchers to send dd to private nursery and also have portage

you can only not claim portage if you are having input off a specialised playgroup. is this what you mean?

and yes it is bloody unfair!

meea Mon 17-Jan-05 18:59:55

The playgroup is set up by the health trust and portage workers run it for them.
We were told that he was allowed 4 session a week in his private nursery and could still access portage.
As he isn't 3 until April his vouchers won't start until September.
I just don't understand why she invited us to the playgroup as she knew how many hours he was at nursery.I just can't help wondering if she ever actually listens to anything I have say.

meea Mon 17-Jan-05 19:01:20

What age did portage stop it is on their 3rd birthday here.

FineFigureFio Mon 17-Jan-05 19:05:36

tbh i canmt understand why it would make any difference if his only input from portage was through this playgroup. You are still entitled to the free vouchers alongside portage! portage can still be used up until your child starts school

Whereabouts are you meaa? i find it terrible how much areas differ so much.

meea Mon 17-Jan-05 19:08:58

We are in Sheffield and come his 3rd birthday he will go from a weekly playgroup and fornightly home visits to a termly visit to nursery from a early years teacher.
It is apparently up to me to to make sure that he continues to make such good progress.

ThomCat Mon 17-Jan-05 19:20:34

I don't really get it either Meea.

As I undersand it children get Portage until they start as Primary school, at about 5 yrs old.

You get help with paying for a preschool nursery from the time your child turns 3.

Lottie attends a private nursery 3 mornings a week (we pay for 5 but due to SALT and hospital appts on Fridays she only goes for 3 days most weeks). We also have once monthly appts with Portage at our home. In addition we have private weekly SALT and additional SDALT and OT and physio at the local hospital.

I dodn't understand what your portage worker is talking about. It doesn't seem fair. Is there an ealy yeras phone number that you can ring and discuss more support etc with?

meea Mon 17-Jan-05 19:30:59

I honestly don't know where we are going with this either.
Most of the other children in playgroup will be going into sn nurseries or mainstream with support .They are all going through the statmenting process.We have been told ds2 will not get a staement and with the progress he has made I don't think he would either.
But I can't help but feel that his progress is down to hard work on our part.
I can't help but wonder what he will be like when he starts school if I just let him sit in front of the tv all day, don't speak and engage him in actvities.
There is no way I would never do that but why should it all be my responsbility.
Sorry to moan but I feel so about it all.

Dingle Mon 17-Jan-05 19:37:48

meea, I have heard that in some places, you can get "nursery vouchers" for children with SN the term before their 3rd birthday rather than the term afterwards. It's certainly worth checking!

...and yes,, if you want it, then it is worth fighting for!! The system stinks and it seems that from area to area differs so much. At the end of the day it seems they are all after getting away with as little as possible to help our little ones, and I am sure that you are not alone in walking out in tears from a situation like this. I know I have done it!
We all have what may seem like a lifelong battle ahead of us in one way or another, but we are not alone in the fight, we all have the support of each other!
{{{{{{{{{{hugs}}}}}}}}}}}}}}

ThomCat Mon 17-Jan-05 19:38:36

Sorry you feel sad Meea. At the end of the day though I feel that it's all down to me as well with my DD. Portage and SALT and physio only suggest things for me to do with her, it's my responsibility to do them. Now she's at a preschool I feel they can share a bit of that responsibility, but ultimatley it's down to me.

meea Mon 17-Jan-05 19:46:30

Fully agree Thomcat of course it is our responsibility as parents but it would be nice to feel supported and to have suggestions on how to help him.
I guess it just feels like we are going to be left to on our own to try and figure out how to help him.
I will do everything I can for my son and hopefully with our love and support he will achieve his full potential.

Dingle Mon 17-Jan-05 19:49:20

Last week I had to take dd out of mainstream to attend an NHS SALT appointment!!Only been fighting for them for 3 yrs and they have to start the same week as settling dd into mainstream nursery! Anyway took her, TBH an absolute wste of time so far, she took a book out of a feely bag and they all said "BBBBOOOOOKKK" dd, was allexcited and signed giraffe-which was on the front cover, turned the pages, signed dog,cat...etc...they then went on to use signing system for sounds that SALT use!! I just had to stop them there, dd uses Jolly Phonics and I wasn't prepared to confuse her. Their response was, Oh we weren't aware of that!Well how the F* would they be they haven't seen her for nearly 2 years. Do the just expect me to sit back and NOT work with her?
I went on to moan about the lack of advice & support we had had in general, one of the mum's sat there and said " oh,XX has been brilliant for us, has been there ever step of the way, gone into XX's nursery...." I know it sounds really nasty and bitter but I thought to myself "well aren't you the lucky one!"
Sorry, I am rather bitter about it all, I am just about ready for another fight of my own!

Dingle Mon 17-Jan-05 19:51:07

Last week I had to take dd out of mainstream to attend an NHS SALT appointment!!Only been fighting for them for 3 yrs and they have to start the same week as settling dd into mainstream nursery! Anyway took her, TBH an absolute wste of time so far, she took a book out of a feely bag and they all said "BBBBOOOOOKKK" dd, was allexcited and signed giraffe-which was on the front cover, turned the pages, signed dog,cat...etc...they then went on to use signing system for sounds that SALT use!! I just had to stop them there, dd uses Jolly Phonics and I wasn't prepared to confuse her. Their response was, Oh we weren't aware of that!Well how the F* would they be they haven't seen her for nearly 2 years. Do the just expect me to sit back and NOT work with her?
I went on to moan about the lack of advice & support we had had in general, one of the mum's sat there and said " oh,XX has been brilliant for us, has been there ever step of the way, gone into XX's nursery...." I know it sounds really nasty and bitter but I thought to myself "well aren't you the lucky one!"
Sorry, I am rather bitter about it all, I am just about ready for another fight of my own!

Dingle Mon 17-Jan-05 19:51:08

Last week I had to take dd out of mainstream to attend an NHS SALT appointment!!Only been fighting for them for 3 yrs and they have to start the same week as settling dd into mainstream nursery! Anyway took her, TBH an absolute wste of time so far, she took a book out of a feely bag and they all said "BBBBOOOOOKKK" dd, was allexcited and signed giraffe-which was on the front cover, turned the pages, signed dog,cat...etc...they then went on to use signing system for sounds that SALT use!! I just had to stop them there, dd uses Jolly Phonics and I wasn't prepared to confuse her. Their response was, Oh we weren't aware of that!Well how the F* would they be they haven't seen her for nearly 2 years. Do the just expect me to sit back and NOT work with her?
I went on to moan about the lack of advice & support we had had in general, one of the mum's sat there and said " oh,XX has been brilliant for us, has been there ever step of the way, gone into XX's nursery...." I know it sounds really nasty and bitter but I thought to myself "well aren't you the lucky one!"
Sorry, I am rather bitter about it all, I am just about ready for another fight of my own!

anniebear Mon 17-Jan-05 21:15:00

We got told that Portage would finish when Ellie was going to her Pre School for five sessions each week.

For a while she went for 4 sessions and carried on with Portage,then moved up to five just before Christmas. Portage then stopped at Christmas. Ellie was 3 and 3 months.

We are in Merseyside

Davros Mon 17-Jan-05 21:30:11

I don't see why it is up to a parent to DO the therapy other than when and if possible as an extra. I see it as my job to make sure it gets done, but "professionals" giving parents advice and exercises and then buggering off.... not good enough imo. I'm lucky as we haven't had lots of different therapeutic input, OT is mostly not an issue, Physio isn't either and I'm very scpetical about the benefit of most speech therapy with non-verbal ASD. Even so, I've always been tempted to ask a professional if they trained and for how long.......... so why do they think I should be able to do it????
Poor you Meea, it stinks. Of course he is doing well because of what you are doing and they want to get away with doing nothing. You must see if there is someone else you can speak to.

Jimjams Mon 17-Jan-05 21:41:09

Yes kick up a fuss. Doesn't sound right (my son attended a ms private nursery and had portage at the same time- portage was one voucher session - which tbh I thought was enough of a cheek- can you imagine them saying to Mr and Mrs NT family- we're going to remove one of your voucher sessions and replace it with 1 hour a week of jigsaw puzzles-hmmm I think not!)

Anyway the thing I found about pre-school services is that I had to constantly get on their backs about everything. The funding seemed much less secure - I was stunned how easy it was to arrange stuff once ds1 got to school. As an example ds1 had a support worker at nursery and I had to write letters/make phone callls at the beginning of every term to keep that funding in place. In the end they cut it anyway- but only about 6 weeks before he finsihed nursery. Funnily enough the one person I had a huge row with is the wiife of his current teacher (eek) His current teacher is lovely though!

heartinthecountry Mon 17-Jan-05 21:41:37

Meea - I don't see why you should be penalised because you are paying for a private nursery. Does your portage worker know that you are paying for it and it is not paid for by the LEA through vouchers? If it is not funded I would have said it was none of their business. Are you still getting portage itself though? Just the playgroup that you have been told you can't access?

Our portage was actually stopped in September (before dd was 2) because she started going to the Early Intervention Centre 2 days a week. Tbh our portage worker was a bit crap so I didn't think to question it or mind losing it too much. Suppose that's not really the point though.

ThomCat Mon 17-Jan-05 22:20:13

Of course it would be nice to feel you have support and have suggestions on what to do, absolutley. I don't understand how you can expect to cope without that. It makes me angry that you aren't getting portage because your son goes to a nursery 2 mornings a week. I don't get how different it is depending where you live, it's just so unfair and so wrong and no wonder you feel so upset. I really am so sorry that you're not getting the support you and your son deserve. Perhaps we need to start a petition or something?

meea Tue 18-Jan-05 07:55:01

Thanks everyone I think that what Jimjams has said about portage taking a session makes sense .If that is the case where we are then ds2 is having 6 sessions a week 4 in private nursery 1 in playgroup and 1 portage home visit.Although the home visit is only fortnightly.
But I don't think that until ds2 is recieving his vouchers the number of privatly paid for sessions he has should'nt have anything to do with them providing a service for him.
After 1/2 term when he leaves playgroup he will just have 1 portage session a fortnight provided by the trust and this will stop altogether in March.
A lot of the other kids he goes to playgroup with go to sensory groups and physio groups so they are also getting extra social interaction .
Really must go get the kids ready as it has snowed here over night .Wonder what his major will be like in the snow.

FineFigureFio Tue 18-Jan-05 08:12:33

It has mad eme realise how good staffordshire actually was compared to other regions. they start SN children at special school (full time if you wish) at 2 years of age!! Where they get all the specialised input. they staement before 3 if a child has significant delays in two or more areas, their portage service is excellent. You have to scream and shout for therapy if you dont send them to special school, but their policy is early intervention is more likely to lead to inclusion in mainstream primary school.

Kent has been more than useless when i moved down here and tbh it made me quite depressed so i know how you feel meaa. i just thank god i managed to get dd in the special school because who knows what kind of support she would be getting?!

Have you tried IPSEA? meaa I really think your son should have a statement. he has significant delays and they are trying to fob you off. What they have tld you about portage is rubbish!

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