How do I go about getting a statement? and what else can I do myself since I'm fed up of waiting!!

[redhappy]

Ds has had one appointment with the paediatrician. Said we would need to come again in 3 months time- I had to make 20 phone calls to the secretary to get that appointment (it is at the end of this month).

Ds has also been referred for speech therapy. I've hit a brick wall with this- have been advised the waiting list is 18 months, got on the phone to try and hassle some people to get things moving but...the team does not even exist yet!!

At the moment it feels like I have no point of contact, so my plan is to make the paediatrician the person I will contact for everything. She was actually on leave at the previous appointment, so we haven't met her yet, have heard not so great things about her people skills let's say! But anyway, hopefully she will be so sick of me she will do what I'm asking just to get rid of me .

Ds is due to start school next September. Obviously don't know yet which school he will be going to, but I'm fairly confident he will get into one which is walking distance away (although we are out of catchment area by about 5 houses) since it has an asd base there. Certainly planning to appeal if he doesn't get in. At the moment feel like I wont send him at all if he doesn't get in there, since I don't feel ok about the other schools around here.

So, advise from those who've been there already would be very much appreciated!

What can I do/ apply for/ request. So sick of waiting for bunch of paper pushers who don't give a shit about my son. Will be grilling the paediatrician about anything and everything, can anyone suggest what those things might be? Want to make the most of this appointment since who know's when we will next. have any contact with anyone

Oh, another thought...can I just make an appointment to see the paeiatrician? eg. just ring up her secretary and say we need to see her? Or does she have to request/approve it?

do you have any pre-school intervention at all?

Portage? - you can usually self-refer to portage.

does your ds go to pre-school at all? or nursery? he should have an Early Years Senco, if so (or similar - always called different things in different regions!). The Early Years Advisory Service will know about that.

Take a look at IPSEA and SOS!SEN for help re: statementing. you can, and should get the ball rollling your self.

If I understand correctly, your ds does not yet have a dx? is one likely? and do you know what it might be (AS vs ASD vs HFA?) I only ask because soemtimes it can be better to try to influence what the dx says - eg the asd base might prefer to take AS or HFA children (crazy but true!)

has your ds had a SALT assesment at all? or is that part of the waiting? is it an option to go private (for statem,enting you will probably end up having some private reports if possible, as they tend to set out the true difficulties, rather than waffle on to try to get out of issuing a statement)

what about OT?

sorry, lots of questions.

start form what issues your ds has - eg my dd1 had lots of dietary issues as well, so I needed to get referrals for that, as well as sorting out biomedical approaches, but this may not be the case for you.

list out what you think he needs help with, and then work your way through that list gettign onto people's case loads.

So you have one year to get a diagnosis and a statement? If your LEA is the same as ours your son will need both of these to have access to the ASD base. You really need to get things moving to achieve that.

You can write to SEN services at your LEA asking them to do a statutory assessment of special educational need which is the process of deciding whether your son qualifies for a statement. It's a complicated process and without a diagnosis is usually harder to achieve. To sort out the statement you'd probably be best asking your local parent partnership service to guide you through it. You should be able to get their number from any early years setting your son attends, your local school or your council's website.

As far as the paediatrician appointment goes I'd ring the secretary and explain the situation.

Get used to the feeling of being the only one who gives a about your son and stop worrying about being a PITA. It's goes with the territory of having a child with SN.

Good luck.

Portage is great and has been a godsend for us - we self referred.

What kind of other issues does your DS have? When we first started I made a list of things I needed help with and who could help me, then made myself a nuisance until I got them.

Your DS sounds a similar age to mine - DS is due to start school next september and we are about to apply for a statement, so we can hold each others hands :)

I agree with what Alison says, although it is hard to feel like you are being a pain - you need to be preapred to stand up and get what is right for your DS, because no-one else will.

Do you have any local support groups? We have a couple here and no-one knows the system as well as other parents within it.

Thankyou all for your responses...perhaps I should have posted later, I'm just about to leave for work! Will read and reply when I get back...
Thanks again.

Thanks silverfrog...good plan to work to. Feeling quite overwhelmed this week, have been SAHM all summer and has benefited ds to the point we started to wonder if there was anything wrong at all?!

Have been a family 'incidents' recently that feel like they have put us back to square one with ds, he's so unsettled now.

We have absolutely nothing. He goes to a mainstream preschool, the senco keeps cancelling when she is sposed to be there (he mother is seriously ill, so have tried to be accomodating). However, it is now a new term, and still nothing.

Have just been feeling hopeless because in professional terms there is just no-one to call!

Absolutely nothing from SALT. I have phoned and phoned various numbers at the building where children's services seem to be based, never anybody to talk to me...that is what I meant by team does not exist. We have been advised there is an 18 month waiting list to see SALT, so I tried to ring them to get things moving. I don't understand why, but there is no team covering our town apparently!! So the secretaries will not provide me with any names to contact, will not tell me who will be part of the team....

All we have had so far...saw gp, who wouldn't refer us because ds made eye contact with us once at end of appointment saw hv who referred us straight away, saw paed who said 'yes, interesting case this one, we need to see you again in 3 months time'. No appointment came through, so about 20 phone calls from em later I eventually persuaded a secretary to make me an appointment for the 30th September.

I believe he needs HFA diagnosis. He was doing so well I had started to doubt he would get any diagnosis, so I have not been pushing so hard (at the professionals I mean) for the last couple of months). Now things have got bad again suddenly hit me how little (ie. nothing!) has happened or been offered to him.

Al1son, I think we have the same LEA, is it by county? In that case yes we do. Have spoken to school they have confirmed needs statement for asd base, and school do not get to choose who goes there.

Shade of Violet...have asked for portage, and were told no because he attends playschool. The senco for preschool just doesn't turn up it seems. Will get back to hassling them afresh next week...
Ds will be 5 this month, so the silver lining in it all is at least he wasn't born early and starting school this year!

Thankyou all, was the peptalk I needed I think. Am used to fighting for him already I think. Just feeling totally lost in the system, nobody to even fight with to get what ds needs!

Portage, as silverfrog we self referred, this changed DS totally.

Apart from SENCO and IEPs 6-8 weeks at nursery. In our area, we had someone from inclusion: Early Years Inclusion Team which provides good support and children with SEN are additionally provided for by the Health and Sensory Impairment Services. She helped in meetings, and advice if needed.

I chased everything, if you don't. you always disappear into a void.

Sorry was a bit ranty and rather incoherent in my last post!

Need to gather my strength and my focus. Just feels like I'm banging my head against a brick wall.

re. portage...tried to get ball rolling myself, rang council and various other people, apparently here if child attends any setting they do not qualify for portage. Is this another postcode lottery then?

Focus on getting the Statement. that will deliver the SALt he requires and also be the passport to the ASD Base.

You have 2 choices - you can discuss the possibility of school requesting the LA for an assessment that may lead to a Statement or you can take control and make your own request directly to the LA.

If you chose to do it self there is a sample letter on the IPSEA website showing you how to apply.

Timescales are such that you really need to start right now. If he were to be accepted into the ASD Base you would expect to have that written into a Statement by 14 Feb 2011. Leave it too late and the Base may be full.

Best wishes

Same rules for portage here!
You can request SA and then tell them to get the dx reports as part of the assessment
You need to start it off now - just send the short letter they will write back asking for your views
It will actually speed things up as they may want to refuse stat assessment but one of grounds for SA is if they need information about the child - ie they cannot make a decision does not need SA without any evidence - not that that will stop them trying.

Look at Cerebra they do SALT vouchers sometimes for those with long waiting lists

Like Agnes said Cerebra is a charity that give £500 vouchers for speech and language therapy if your child has had none in the last 6 months they have lots of great info on their website and a free postal library too.

Its really frustrating to have so few resources available we have had to do most things privately as and when we have the money. The Cauldwell Trust is another charity that does funding for some interventions.

I do hope you start getting more help on nhs but hopefully you can get some help outside too.