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SN children

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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bbkl · 05/01/2015 20:45

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frazzledbutcalm · 05/01/2015 20:54

Thanks bbkl .. I did a self referral for asd assessment with the help of the school nurse. I contacted her after dd primary school said it was doctors responsibility and doctors told me it was schools responsibility. I just got passed from pillar to post at every turn. So one day I rang the school nurse, she came to see me at home and we filled in the self referral for dd. We're now almost 2 years down the line and things are happening. After being 'rejected' by CAMHS (they said dd was fine), I pushed for them to look into it further. Reluctantly they did and they now say yes there are grounds for assessment. We're waiting for appointments for ADOS assessments. So we've started the process. After reading on here though, I don't understand what OT and SALT etc do..? We've never been told of a developmental paed .. should dd see one? I feel like everything for years has just been us muddling through thick fog and dealing with things ourselves, making excuses for dd, apologising for trying to get her help with school etc. I don't want to do that now, I'm determined to stand up and be assertive! The SENCO at her new secondary school is being very good, but I don't think quite good enough.. I feel like there should be a proper order to things but we're very hicaldy picaldy!

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PolterGoose · 05/01/2015 21:14

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PolterGoose · 05/01/2015 21:25

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frazzledbutcalm · 05/01/2015 21:27

Thanks polter .. whenever I post you always answer and seem so knowledgeable! What kind of things do SALT and OT do? Also physio .. Dd is very hypermobile but gets no help, we gave private dx of SPD, again no help. Are we entitled to taxi to school? Should Local Authority pay for some or all? How do I know if we're entitled?

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frazzledbutcalm · 05/01/2015 21:29

Cross posts!

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PolterGoose · 05/01/2015 21:35

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PolterGoose · 05/01/2015 21:36

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bbkl · 05/01/2015 21:42

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Ineedmorepatience · 05/01/2015 22:21

Hi frazzled, SALT could do a complex communication assessment which would look at your Dd's higher level language skills. These skills are often lacking in children with Asd/aspergers even though they may be able to talk the legs off a table!

OT could look at fine motor skills, gross motor skills, sensory issues (which you know she has)

Both these proffs can advise schools on the best ways to help your Dd, bothcan write full and detaiked reports explaining exactly what your Dd's difficulties are.

Hope that helps Smile

2boysnamedR · 06/01/2015 01:20

Ot has also been our best service. Ds has a dx of dyspraxia ( but still suspect asd). Some areas do a initial assessment then a block of therapy that you do at home. Luckily for us we have had blocks of ot over a few years now. If your dc is sensory seeking or avoident ot can help you meet those needs. Same with hyper mobility. Ds has exercises to do at home.

Slt discharged my ds at five. I found the nhs useless but you need them to get a asd dx as they have to assess.

We are still under a pead but we asked for this. We see her once a year but post dx she is just a fast track for onward referrals. Asking a pead for a referral to physio etc is faster via the pead than via the gp ( who generally never gets involved with ds and his sen)

senvet · 06/01/2015 02:43

I discombobulated.

In cases that we help to prepare for Tribunal about the first question is 'what independent reports do you have?' and the ideal is Ed Psych, SALT and OT, and maybe physio for hypermobility.

But even when the answer is 'none' I don't think I have seen such a lame set of responses from the professionals like GPs and school staff before.

When I found my own kids had SEN, my first job was getting the indie reports. Then I told the school.

When we get independent SALT reports for kids with ASD (and assorted similar language delay) they NEVER say that the therapy should be in a 6 week block, or stop at all, because ASD doesn't vanish after 6 weeks.

And then we go to tribunal and (typically) weekly therapy plus continual class-based programmes get awarded because it is so easy to see that ASD doesn't just go away. Actually, these days the LAs that start with 'block of 6 weeks' usually change their tune before tribunal. ASD doesn't stop so why should SALT?

To be fair, an ASD friend who went to special school has become so proficient in mainstream-language, that he has a job, is married, and you wouldn't know. He has had to learn all those tricks of body language like when to look up and when to look away, to match the volume of the speakers around you, to stand the same distance apart...

He had to learn those things through the conscious channel until it became automatic, like teaching a mainstream kid please and thank you. So fair enough, he stopped SALT at 18.

But no, no, no - we do not have 'signed off'.

The battle ground is more frequently over whether the programme should be classroom-only and delivered by teacher/TA, or whether we should add separate small group sessions once a week to learn social skills like turn taking. And if there is a well-below-average score for, say, vocabulary or expressive language, our independent reports tend to advise direct therapy once a week with a qualified SALT.

Similarly, our indie OT reports certainly recommend things like pencil grips and writing slopes, touch typing and keyboards. An NHS OT would probably come up with these too. The indie reports are more likely also to suggest exercises to strengthen fingers and all those core muscles which we need so we can sit on a chair and write.

But now these indie OT reports also go through all the things that help deal with the sensory issues that get in the way of staying in a calm-alert state. So some kids need deep pressure in the palm of the hand, some need ear defenders, or a break out room that is calm and quiet. I heard of one who could happily do a secondary school lesson of 1 hour as long as he got up and did 'press ups' leaning against a wall.

There are always two things to think about with each learning difficulty

  1. how do we change the learning environment so that my child can learn
  2. what therapy can my child have so that it is easier to learn in a typical environment

So if I had a spare box set of Patent BootsUpTheBackside they would be made available to you to give at least one each to these lame professionals who are supposed to be helping you.

I really hope some of this has helped...

Ineedmorepatience · 06/01/2015 07:56

The problem is senvet that not everyone can afford indie reports. We certainly couldnt until we started getting DLA for Dd3. I had had to give up work because we couldnt use child care for Dd3 and we were only surviving on Dp's wages.

It took us 3.5yrs to get Dd3 a dx via the NHS and then foolishly I took my eye off the ball for a year thinking that her so called inclusive outstanding primary would do the right thing by her.

They didnt and now she has had to start secondary without a statement.

Frazzled if you can afford indie reports, then great go for it. Otherwise keep ploughing through the NHS. I found if I offered to attend appointments at short notice I could jump Dd3 up the queue if people cancelled appoinmtents at the last minute.

Good luck Flowers

PolterGoose · 06/01/2015 08:01

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2boysnamedR · 06/01/2015 09:53

Indi reports where good for me when nhs discharged ( I had zero choice. Ds was at cut off age and I couldn't stop it - I tried very hard to). But nhs was good enough for the rest.

Schools in my experience ignore indi reports so always stick with the nhs even if you choose to go indi.

Things like the alert program ( push up on walks etc) I need to get nhs ot to repeatedly go into school to make school implement. That would be costly if it was indi.

Agree if you go to tribunal you have to get indi reports. Let's hope you don't have to do that.

There are lots of asd kids doing well in ms with no statement / ehcp. It's just getting a good school on board. ( by good school I mean opened minded and caring)

senvet · 06/01/2015 17:39

I am still gobsmacked by the way some of you have been treated, The rottweiler in me is growling....

I keep finding that parental gut instinct is backed up by the indie reports I have seen in 90+% of cases, just analysed and explained in terms of the way the brain actually works. Where parents think the NHS or school have got it wrong, the evidence usually shows exactly why. So yes, Polter, I would put good money, if I had it, on Frazzled having her dd's needs correct.

I agree - 3 indie SEN reports is the rolls royce option, and even then, the school's attitude is key. We were lucky with schools were happy to rely on our reports rather than bother with NHS ones, but we were never more than School Action Plus with either of our 2 SN dcs.

But if you are in Kent/Sussex then try the Bedgebury Foundation. They give a proportion of the cost of indie reports, and also touch typing lessons etc for kids that need them. The amount you get depends on your finances. No tribunal needed. Even if the school ignore it, you may feel better enlightened.

And if you do end up with a tribunal and are entitled to legal aid, then it pays for essential reports.

Several good experts do reduce their fees for cases where parents are struggling.

bbkl: have you asked for an assessment? Some LAs refuse as a matter of course, but back down close to the hearing. You don't need a diagnosis.

Otherwise, the NAS Helpline number is 0808 800 4104. They have trained Education Volunteers who can help you with what you are entitled to from school, and letters and strategies to get it.

I don't know if they have a type of volunteer to help sort the NHS. Sounds like a lot of people need it.

Still feeling for all of you battling out there, and so impressed that you do.

ps how do I get bold?

PolterGoose · 06/01/2015 19:07

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PolterGoose · 06/01/2015 19:08

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frazzledbutcalm · 06/01/2015 19:26

Wow ... I need to re-read all of this to absorb it and understand it! I didn't know what indie reports were until polter mentioned independent Grin
Why do people go to a tribunal? What is one and why is it necessary?
polter .. I do have a fair understanding of dds needs, but I feel so mixed up and don't think I'm getting the best for her ... it's just me talking to school, no outside body really atm. I only realised today that SALT could help with dds lack of communication with the outside world. She talks to family but that's pretty much it. I assumed SALT was only for pre-school age children who didn't have good speech yet Blush I definitely think she'd benefit from OT. But every time I mention anything at the GP they just say there's no need for any referral anywhere for her, we're managing things Hmm Would these things be offered after her ADOS or should they be done alongside ADOS?
Will re-read then post again. Thanks so far for all help and advice.

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PolterGoose · 06/01/2015 19:32

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Ineedmorepatience · 06/01/2015 19:48

frazzled I really think you should read, read and read as much as possible about Asd/aspergers and in particular girls and women with the condition!

Arming yourself with knowledge will empower you when you are faced with people like your GP!

My GP and I have come a long way over the years and he now recognsises that I know more about my children than he ever will and he helps by being our platform for referals.

Google is your friend as is this board Smile

senvet · 06/01/2015 20:39

Hello
First, I am concerned that one of you is on another thread and about to have a tribunal - and may now be worried that you needed independent expert reports. Last time I looked at the stats, 75% of parents won appeals, and the LAs are quite capable of looking inept even with expert witnesses that the parents can't match.

Polter I'm new. Or at least I signed on ages ago and did nothing until this year. I am a wheelchair-using, scuba-diving, sky-diving mum with MS, plus 2 SN kids and a bunch of SN relatives that I have helped, and who have helped me. Just now I have got inflammation on the bones at the base of my spine so cannot sit for long, so have spent more time lying on one side with my laptop, hence mumsnet.

I have been involved with the NAS helpline scheme (the one with the trained volunteers) since it began. They have two types of volunteers, Education Volunteers ad Tribunal Volunteers. The EVs help families up to a decision that they want to appeal, and TVs take it from there.

you will have guessed that I am at the TV end.

Do I count as a peer?

I have come away from my first few days on mumsnet with ideas for my own family members, and very impressed by the support given by SN mumsnetters to each other.

Frazzled no surprise that I mention this, but if you think ASD might be relevant, the NAS website is www.autism.org.uk

Ineedmorepatience · 06/01/2015 21:39

Smile sevet if you mean me dont worry I will be fine. We actually do have an indie EP on board, he is very lovely and is coming with us as a witness. if you dont mean me, ignore this Smile

Its good to have you on board, the more the merrier Grin Flowers

Ineedmorepatience · 06/01/2015 21:39

Smile sevet if you mean me dont worry I will be fine. We actually do have an indie EP on board, he is very lovely and is coming with us as a witness. if you dont mean me, ignore this Smile

Its good to have you on board, the more the merrier Grin Flowers

Ineedmorepatience · 06/01/2015 21:39

Ooops Blush