Where do I start ? DD (2) has diagnosis but I have been told she is too young to get extra help

[spur]

Hi There, I have been searching all the SN threads and may have got a bit confused! I have been reading about DLA and 1-1 help at nursery etc.
I just asked the special teacher ( who told me that she knows everything ) about getting extra help for my dd at nursery and she said we can only get help when she is 3. If I try to get help I will be turned down.

Sorry - bit of background. My dd has GDD and diagnosed with PVL - a brain injury that she was most likely born with....
She has no speech but is starting to sign a few words suddenly and say mama at everything. She is very immature for her age. She is walking but needs to be watched or she will fall over, can't see depth/danger and is clumsy.

I know she is still young but after reading lots of posts I get how tough it is to get help... I also realise that my dd is doing pretty well considering the diagnosis.

We have been told by Paed that they do not know what dds potential is. They expect she will have learning difficulties and some motor problems. We are now on waiting lists for everthing except SALT.
SALT has been observing dd for 2 months now.
In that time with no actual therapy we have gone from nothing to babble to some signs. Its such a slow process

So its all fine apart from having no one to ask what to do now? I am on waiting list for portage....I am sure its a long wait!

I checked out Cerebra and think it worth applying for DLA.

I know you are all experts so I figured it was worth posting my message.

Any tips or thoughts will be greatly appreciated.

hi, My DS was born prem and had PVL, no diagnosed with CP. Definitely apply for DLA, describe everything in detail as if it was the worst day. My son is 4 now and we have had DLA since he was 6 months old and it could have been earlier if I had got my act together.

In terms of schooling, you are entitled to request a statutory assessment for a statement of educational needs at any time. In spite of what educators may tell you 2 is NOT too early. If you do it now and get the ball rolling she may be statmented by the time you start school which gives you a lot more leverage over where she goes. Again when going through the process of statementing you need to state the worst things, where she needs help and how. Ask for everything you need and more, you will not get it but better to start high and end up with less than start low and end up with nothing.

Getting help, both DLA and statmenting, can be depressing as it really focuses on what is wrong and as parents we spend our life celebrating our SN DC's achievements but you need to realise that by telling it how it is you will (hopefully) get the support you need.

Also, it is possible to get 1:1 help at nursery before 3, every LEA has a discretionary fund to provide such help. We got it before my DS's statement kicked in. Schools or nursery's are only obliged to provide help such as 1:1's though if it in the statement which is a legally binding document, hence my focus on that!
I would request a statutory assessment immediately by writing to the LEA and also request to see or meet with the area coordinator for special needs at preschool level. Each LEA will have one of these but they may have different titles and nurseries may not know they exist. These people work for the LEA not each individual nursery and are there to support the nursery to provide the appropriate level of care and education for those who are identified as having SN while at preschool. These are the people who would help the school apply for the discretionary funding the get 1:1 before statementing, but if you have got the ball rolling with a statement you may find that the money is more forthcoming. (You may not of course though!)

I hope all this makes sense, it is a bit of a ramble, but I've been through it and really it is only you who will drive it forward as it is only you who has your daughter's best interests at heart, everyone else has budgetry constraints, but that is not your problem. It may sound selfish but I have come to realise that only those who shout loudest and longest for the needs of their child will have those needs met. I was a quiet, mousy type of person before having an SN DC - I am not now!

Good luck!

You can get DLA from birth (you don't even need a dx).

Dd2 has been getting help since 2.5 in the form of SALT, SN Nursery, Music therapy but has only started getting 1:1 in the past 6 months but that because she only started MS nursery 6 months ago.

You should be able to get support from Portage services, social services (if you want it).

We managed to get dd's 1:1 with out a statement.

Thanks Hairy, I think the LEA lady is the same person that told me i cant get 1-1. But she offered to go to the nursery and help them if necessary. I got the impression that she thought my dd will be fine. She is definitely my contact for pre-school SN.

I will invstigate further.

I did enquire about a SN nursery and there apparently is not one in my area.

Maybe I am jumping the gun a bit - DD starts nursery in Jan so I guess it will become evident if she is struggling.

In the mean time I have just ordered my new claim pack for DLA.

It's a shame there's no SEN nursery in your area, DD went to ours when it first opened, and DS2 was offered a place, but my current house was too far away. He did get 1-on-1 help at a mainstream nursery, but only from 3 yrs, my LA will only pay before then at SEN nursery that I couldn't get to (had to take older kids to school). Statement is the key.

My dd had a 1-1 a nursery 2 mornings per week when she was 2, provided via Social Services. She was then statemented at 2 and a half, via the LEA.

We had portage from under a year, and we had respite help for 3 hours each Weds morning when she was 2, via Crossroads, Caring for Carers.

Definitely claim for DLA. Good luck!

dd2 has had dla since 6 mos, and was given two half days at a state nursery from 12 months (dx dev delay at this point, now varying forms of cp lol) she had full time 1-1 help at (full time) nursery from 2 years (before this the ratio of staff - kids was deemed adequate).
because we move a lot, i'm used to a postcode lottery, but always call the early years department at the lea
dd2 is now 6 and still at mainstream - she always will be. we have had a 1 year period of day release to a special pre-school, but the help she has received in mainstream has been more than adequate.

call the early years team at the lea! never too early to be starting to make contacts! (oh, dd2 wasn't statemented until year r - all previous 1-1 was done from early years budgets on school action plus)

DD got 1:1 from about 6 weeks after she started pre-school at 2.6. It was through the early years section of Children's Services. She is now 4 (yesterday!) and is guaranteed 1:1 funding until July, when she leaves pre-school.

Brilliant! Thanks guys - This is just what I needed to hear. I will be on the phone next week to get this started.

I do not know why one conversation stopped me in my tracks. I am not usually put off that easily.

THis is a whole new experience and I am sure I have lots of work to do.

I appreciate all the advice. Its so much easier making these calls with some knowledge behind you. I know I would doubt myself otherwise and apologise for bothering everyone if they were not helpful and forthcoming with information.

I am now armed with the right questions.

I will keep you posted.

Thank you so much this is amazing. Brilliant advice....
Also I was feelng like I was jumping the gun with the statement.....however now that it is clear how long it actually takes I will not be waiting.

Especially as dd has a diagnosis. None of the medical professionals are sugar coating dds future. I am going to be prepared now to fight for her!

Is there a local SN school? They sometimes include a nursery and they may advise you.

I have been advised there is no SN nursery or nursery with provision for kids with SN. I live in LOndon so I find that hard to believe. Again I will be investigating this!

wow starlight, thanks for laying it down! I totlly get what you are saying. It seems evil to put such a shite system in place to challenge people who just want to help their kids.

We were lucky and got seen by pead quite quickly - everything seemed to be happening fast.
Having recieved the diagnosis I was naive enough to think it would continue like that. Instead its like everything has stopped and we are just in the 'system' 6 month waiting lists for assesments to see where on the next waiting list we will be!

Its such a shame. Although we do have a good HV who is helping so I should not grumble too much!

My goodness! Not angry or upset at all. Since being referred at 18 months my daughter has come on in leaps and bounds thanks to mumsnet tips. I have already become very proactive.

Its amazing the little things you can do every day to help.

I have already booked private assesments for ot, physio and SALT.

I am not prepared to wait. DD is having a real spurt since adenoids were removed in Sept - another example of not waiting and getting on with it that paid of massively - I had to explain myself to my GP etc. Anyway I get what you are saying about wasting time. Every day counts especially when your dc is approx 12 months delayed!!!

Infact the only reason we were referred to nhs paed in the first place was following me seeing a private paed for an honest opinion....the gp called me out of the blue to question what was going on and why I was seeing other drs! Then suddenly took me seriously.

I also am going to BIBIC in Jan. I am hoping this will help too.

Anyway I really appreciate your time and advice. You are right - everyones comments and experience on this board is so valuable....

spur - where in london are you? we live just outside london but I know of quite a few SN school in the south part. Can pass the names on if that helps.

Thanks Hairy, I am in Shepherds bush area /hammersmith.