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Here are some suggested organisations that offer expert advice on special needs.

Calling poltergoose and other wise mumsnetters for help ;-)

45 replies

frazzledbutcalm · 05/01/2015 20:33

We've muddled along with dd suspected asd for years. We cope and get on with things as best we can. Dd is now in the process of assessment for asd. It's been a long slow process so far. We now get DLA for her, thanks to mumsnet (I didn't realise you could get this without a dx). SENCO at secondary school is really good - or seems really good to me given that we had no help or understanding at all from primary. I've read the SN boards for quite a few months now and it amazes me how lots of children with the same problems as my dd get so much help ie hypermobility, sensory processing problems, asd - gets help/referrals to OT, SALT and a whole host of other things. I want to sort things out for dd once and for all and get her, and us, all the help and support we should be getting. Where do I start, how do I do it?
TIA

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senvet · 06/01/2015 21:44

All fingers and toes crossed for you Ineed, and of course everyone else on the thread who is still battling

Ineedmorepatience · 06/01/2015 21:58

Thankyou Smile

PolterGoose · 06/01/2015 22:06

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WhoKnowsWhereTheTimeGoes · 06/01/2015 22:24

I've been impressed with your good advice too Senvet - I'm about to head into appeal over the content of my DS's statement so I am spending a lot of time lurking on these boards.

Frazzled - I've been reading (and occasionally posting on) these boards for about 5 years now, at that time I was in a similar situation to you in many ways, except that my DS had been under the NHS SALT since he was 3yo (he's nearly 11 now). I have learnt SO much on here, I am in no doubt I would not be where I am now with DS without all the brilliant helpful people on these boards.

Just from my experience, although DS has been on the books of the NHS SALT for 7 years, they have only helped with his speech. The therapists have been great for that, but the time they have available for therapy is totally insufficient. They have never carried out assessments for language disorder - upon having a private assessment made for tribunal last year I found that he does indeed have a higher level language disorder. When DS was diagnosed with his AS and dyspraxia in 2011 (which the school helped to facilitate, via the school nurse) he was referred to NHS OT. He had a great deal of help with his coordination but they did not do anything for sensory issues and discharged him again after 18 months. At this point I applied to the local authority for a statutory assessment of his needs with the aim of obtaining a statement (now superseded by EHC plans). I am still in that process a year later and will be for another 6 months or so. So, time is of the essence really. In short, what I am saying is that while you could get more out of the NHS SALT and OT services, even the best they have to offer is quite likely to be insufficient. It's a good place to start and you never know, it could be great, but do start reading up about the process of getting an EHC plan, it takes a long time and it's best to be prepared so that you can launch the process if and when it becomes necessary.

Could I suggest also perhaps seeing if the NAS have a branch where you live? They usually have regular meetups and it can be a real lifeline to have other parents in the same boat as you to talk all this over with, plus they will have local knowledge about schools and services.

2boysnamedR · 06/01/2015 22:28

Yes welcome senvet - good to have you with us. If you work with parents going through tribunals you shouldn't be shocked by anything.

I wouldn't be shocked by anything any more. I have heard it all....

Indi reports have been best for me when ds was discharged from nhs salt. I was told he had a 'mild delay' but it didn't sit right with me. Indi showed he had a severe disorder and was over half his lifetime delayed. I was shocked he was so bad. Money well spent there and not too much ££ either.

Frazzled - there is so much to take on board. Try to think in steps up a ladder. Ehcp / tribunal etc is near the top rung when all else has failed your child so don't think too much above your first few rungs :0)

There's a lot of chipping away to do and it seems lots but stick around and hopefully we can guide you along the path - which I hope is lined with helpful schools and clued up sencos.

bbkl · 06/01/2015 22:30

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WhoKnowsWhereTheTimeGoes · 06/01/2015 22:40

Just one more thing for Frazzled - keep your paperwork. Anything written down about DD from school, anyone else she sees, reports etc. Keep notes (dated) of meetings with school. Make notes yourself about concerns you have over her development etc, also think back and note down things that have concerned you in the past, delayed developmental milestones. It all helps build the bigger picture when you have to convince people to help you. I keep a lever arch file with all this in and a hardback notebook with all my notes of meetings, phonecalls etc. It has all been invaluable.

senvet · 07/01/2015 01:51

Thanks all. Frazzled I agree 100% with WhoKnows about the file.

An extra spin on it: if someone calls, and says something relevant, then make a note, at the time, and send a confirming email as soon as you can after. So, Example: dc reports a minor bullying thing and you call to find out about it. Th email might read 'thanks again for your help on the phone clarifying the incident today. I'm relieved that it was name calling and not hands-on and was not very serious, but glad you will be putting it in the incident log all the same so we can keep an eye on things'.

AND if you can manage, keeping a diary of examples at home, both good and bad, is great. A friend told me the other day that her son uttered his first ever word on Christmas Day aged four and said 'Cranberry and Mustard'.

Equally, people keep notes of melt downs, near misses, broken nights etc,

All this is useful when you are in a meeting to give clear evidence eg 'my son sleeps through the night only on days when he has been at running club. The other nights he wakes at least once, and bad nights happen about once a week, when he wakes at least 3 times and bangs on all the doors'.

Otherwise you can come out having mentioned broken nights and leaving the audience unaware of the difficulties for the family, and a possible solution.

I hope I making sense here, but a few key examples can have great impact and be very persuasive.

bbkl fingers crossed for the last bit of the assessment.

frazzledbutcalm · 08/01/2015 22:03

Wow wow wow thanks everyone. There's so much to learn and digest from you all. Only a quick post now as I'm off to bed. Different news today, we've had word today that we've been awarded dla for ds2 - low rate mobility, middle rate care - same as dd. It's been a shock as the decision was so quick! It's hard trying to sort and fight for what all dc need. We're still awaiting the decision of dd1. But for this thread I'll concentrate on dd2 as that's who this thread was started for. Will post again soon. Thanks again everyone, all posts and help are very much appreciated.

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frazzledbutcalm · 12/01/2015 09:05

Well have emailed dds school ... she just can't cope with school, is getting worse with anxiety over it :-( She wants to be home schooled. I've told her we'll try and sort everything that makes it unpleasant for her - see if we can change things a bit to make it not as bad. I thought we'd do one thing at a time rather than making lots of changes at once. First on list is the school is very big and dd doesn't cope with all the people. Senco arranged it so that dd could leave her lessons a couple of minutes early with a friend so she could walk along the corridors with no hustle and bustle. However only 1 teacher has ever carried this out. I've now emailed saying I would like this put into practise by all teachers if the option is still available. Waiting to hear ....

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Ineedmorepatience · 12/01/2015 10:02

Good luck frazzled I hope the school step up!

PolterGoose · 12/01/2015 13:41

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senvet · 13/01/2015 00:58

My DC has SEN at secondary and we gave the SENCO a chance to put things into effect, and like you, emailed when it was not happening. The SENCo was clearly telling the other teachers what to do, they just weren't doing it

Eventually, I just emailed all the teachers direct, pointing out in the nicest possible way that what I was asking for was not optional.

We have moved to the point now where none of them tell her off for things that are not her fault, but it took a term to get there.

With hindsight I would have stepped in earlier, but it is hard to judge what is going on between members of staff.

DD is much happier now that the school has its ducks in a row, so I hope it works out well for your DC soon.

frazzledbutcalm · 13/01/2015 20:23

Thanks sen. I also asked about an EHCP in the email. I don't know if dd has one or if she's entitled to one .... senco has emailed back to arrange a meeting, she feels we need to meet up to discuss this. I'm not sure if it will be about dds needs or EHCP or both. But it's a step in the right direction.

On a separate note, we've been awarded DLA for dd1 today! So we now have 3 dc all receiving middle rate care and low rate mobility Sad Made me a bit angry though as dd1 and ds2 were refused their claim back in May, yet now they've got this award when I've reapplied. Nothings changed, I went into more detail on my claim form but the first forms were pretty extensive anyway! My aim is to do my best for them and get them what they need and deserve. It's so hard when they all have varying needs and attention. The extra money means dh can work fewer hours during school holiday time to help/support with the trials and tribulations of daily life! Money question - can I claim carers allowance for all 3 or just 1? I've notified tax credits but that's all so far.

I don't get much time to come on here but will post again asap, and update about meeting with senco.

Thanks for all continuing help. Smile

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senvet · 13/01/2015 22:25

Sorry -don't know about the benefits beyond DLA.

But good luck with the meeting and if they have an agenda, and you want EHCP discussed, then ask for it to be added -as 'any other business' if they are being formal.

The agenda (whether hard copy or in their heads) is not their property.

PolterGoose · 13/01/2015 22:30

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frazzledbutcalm · 19/01/2015 19:29

Thanks again everyone. Seems a bit daft not being able to claim carers for each child you care for. Confused

We've had the meeting with SENCO - absolutely lovely woman! She's spoken to Mr Jordan (specialist who dx dd sensory issues) so now has a VERY good understanding of what struggles dd daily life will entail. This may help school get extra funding for her. She's putting a few measures in place for dd now - 1. Will ensure dd is let out of every lesson 1 minute early to get to her next lesson in quiet. 2. Early lunch pass for her and a friend to ensure lunch hall is at it's quietest/lots of spare seats. 3. Possibly taking her out of TI (technical intelligence) as it's in the lecture theatre and the seating arrangements and lighting are bad for dd (sencos decision). 4. A teacher to act as her mentor, will meet and greet her in mornings, check on her at break and lunch and end of school day. Also will try to choose a mentor who will be in dds lessons with another child so can look in on her then. So far I'm very impressed with all of this and I'm to email if I think of anything else she can do for dd! Smile

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Ineedmorepatience · 19/01/2015 22:13

Great start frazzled Smile

I hope things improve for your Dd.

Dont forget you can still apply for an EHCP needs assessment yourself if you think this support is not enough at any time in the future Smile

frazzledbutcalm · 22/01/2015 14:09

I'll bear that in mind, thanks ineed
Dd doesn't want a teacher following her around being her mentor. I hope just the knowledge that someone is there to guide her will ease her anxiety even if she never talks to them!

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frazzledbutcalm · 28/01/2015 14:20

I've posted this next query under 2 sections but got no answer as yet so am posting now hoping someone is still watching this thread.
I rang tax credits to inform them of my 2nd child being awarded dla. The man said he'd backdate everything and I'd get at least £500 backdated money. My award letter came through - I've been given £395. I rang up today to query it and was told they've kept £310 of my award as my whole tax credit amount is quite large (dh didn't earn much last year as he's newly self employed), so they're keeping the £310 until the end of the year when we reapply. If it turns out dh figures were correct then they'll give me the money back then. If his figures were wrong then they'll keep the money and sort out how much I will pay them back?!? Surely they can't do this? Dh has an accountant so figures were right. I'm just confused as to how and why they chose this amount. I've since had 3rd child awarded DLA and they haven't kept any further money apparently. Although her backdated money isn't right either?? confused

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