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

SN children

SEN Top tips

28 replies

inappropriatelyemployed · 14/05/2013 15:50

I have finally got round to get a blog together.

I am not trying to give advice on it but pull together useful factual info.

What are your 'top tips' - practical things like you have a right to be present at any assessment of your child?

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StarlightMcKenzie · 14/05/2013 16:15

Before every meeting ask yourself 'How will my child benefit from this use of my time?' If you are unsure, ask the meeting-holders. If you are still doubtful after that, use the same time doing something that you know WILL benefit him/her.

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StarlightMcKenzie · 14/05/2013 16:18

And not just meetings. Therapy too.

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MareeyaDolores · 14/05/2013 16:39

Always remember that, in 10 years time, even the best professional will probably have moved on. You will live with the consequences of their actions, but they will have forgotten your child's name.

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StarlightMcKenzie · 14/05/2013 16:41

10 years?

10 months more like, and for some you'll be lucky if they remember you after 10 minutes.

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MareeyaDolores · 14/05/2013 16:46

The 'triad of impairments' model can usefully be applied to understand the difficulties of a parent trying to talk to a SENCO

Many schools demonstrate strong traits consistent with 'institutional ASD'. Expect their 'communication' to malfunction, their 'interaction' to be clunky, and their 'imagination' to fail entirely.

And use what you've learned to try to compensate for that.

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inappropriatelyemployed · 14/05/2013 16:54

Very good!

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rosielou678 · 14/05/2013 16:59

Practical tips

DPA searches. Make sure you search everyone that has had any form of input into your DC. Even if the school is super-dupa friendly and totally on-side with you, still search them because it might turn up something that the LA 'choose' not to disclose. Also search your GP. Everybody!

Freedom of information searches. Send them to LA and school. Make your questions as pointed and as explicit as possible so that they can't be wriggled out of. For example, if LA/school has claimed that there is a visiting supa-dupa-top-person every week who is the answer to all your DC's problems, ask questions such as 'how often this term has the supa-dupa been on site', 'how often has the supa-dupa visited during this academic year', 'precise date the supa-dupa was last on site', 'how many supa-dupa sessions per week' 'how many children per supa-dupa session' 'how long is each supa-dupa session'.

Document every meeting with school or LA. Always record who was present and also who was absent (the absences can be very important). Document it all without emotion, just be very very factual.

Emotional tips.
Keep going - you are your child's ONLY hope.

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StarlightMcKenzie · 14/05/2013 17:01

Flag up 'What do they know?'

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cornypedicure · 14/05/2013 17:03

what is a DPA search?

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rosielou678 · 14/05/2013 17:06

Data Protection Act. You have the right to have a copy of every single document/email/note/meeting note/telephone note etc etc from every single agency that has been/is involved with your child.

My solicitor did all mine.

Hopefully someone else could point out a website that gives more details?

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StarlightMcKenzie · 14/05/2013 17:08

TBH you need to do DPA simultanously across multi-agencies.

If you do one at a time they each have to seek permission of others copied into the communication which alerts the next agency that you might do them and they can weed.

I think it is worth pointing out too that they DO weed. I believed stupidly that they 'couldn't' because it was illegal.

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StarlightMcKenzie · 14/05/2013 17:17

Throughout your blog you could refer to 'Paranoid Parent' in the 3rd person perhaps. And when mentioning something that is supposed to be fact 'i.e. DPA information must all be given on request', Paranoid Parent can suggest you do all agencies at once to be able to identify any weeding.

Do you think it might be worth putting together a 'Paranoid Parent's' guide to gaining a statement.

We could brainstorm here.

So Paranoid Parent;s step 1:

Step 1) Send letter to Director of Ed requesting SA.

Step 2) Send letter to All agencies including SEN dept stating that you require 2 weeks notice for any visit/observation/assessment and expect to be present.

Step 3) Include in above letter, that you do not consent for any information to be shared between agencies, except via you, and you will require all reports, observations and written documents about your child to be sent to you to check for accuracies and/or comments if there are areas of disagreement, BEFORE they can be shared with other agencies.

Step 4) Paranoid Parent expects a refusal so books an EP for x weeks into the period in order to appeal blah blah blah.!?

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rosielou678 · 14/05/2013 17:25

Yes - mine were done simultaneously across multi-agencies. And yes, they do weed which is illegal. Sometimes exactly the fact that they have weeded is more interesting than if they'd just declared them Grin Grin

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inappropriatelyemployed · 14/05/2013 17:28

The problem is I really don't want to get into advice giving as that becomes tricky.

Also, I want to pool factual information without setting out what parents should do or setting out specific 'tactics' available as this could be tricky too.

So informing people of their 'rights' seemed to me to be the best approach.

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rosielou678 · 14/05/2013 17:31

Other factual information could be to point to the website with the SEN Code of Practice and the government's website with the full Education Act. May be too much for some parents, but for others it'll be good bedside reading.

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inappropriatelyemployed · 14/05/2013 18:18

Done! Thanks

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Summerloading · 14/05/2013 18:24

It would be helpful to signpost to regional pathways for care and assessment.

For example, it seems to be a secret in my area that you may self-refer to OT and SLT. The information is buried within an obscure section of their website.

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inappropriatelyemployed · 14/05/2013 18:33

I think that would be really difficult to do on an individual regional basis but I can flag up the fact that many services allow you to refer yourself so parents should check

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Summerloading · 14/05/2013 18:38

Good point above.

another one - increase awareness that there is such a creature as an SN dentist for those struggling with dc's who don't get on with "normal" dentists!

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MareeyaDolores · 14/05/2013 18:45

DWP website for DLA helpline, and carers stuff. And also link to the Cerebra guide. With a note saying people can ask for the datestamped form to be posted out so payment is backdated to the phone call date (rather than on receipt of form).

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MareeyaDolores · 14/05/2013 18:50

For people on waiting lists and stuck in the 'Is it SN or am I just parenting badly' doldrums. Triple P (one of the more evidence based parenting courses) is available online so they can sign up for it, and crack on. Might help, won't hurt, and means one box is ticked before the first appointment.

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MareeyaDolores · 14/05/2013 19:12

Something about 'stuff'.

Regular stuff that is large/ strong
eg Big buggies, Tripp trapp high chairs, backpacks with rein, pet gates

Safety/ protective stuff like magnetic cupboard locks, iPad covers, glass safety film, circuit breakers

Educational stuff like pen grips, stabilo pencils, alpha smart keyboard, writing slopes, software options and apps

Specialised equipment that can be bought cheaply or substituted with home-made, knock-off or second hand options, eg Mac Majors from eBay, the Polish shop for pseudo-Piedros, thera-putty v. playdough

Outings and activities options, eg soft play on a termtime Inset day, adventure playgrounds for the 'livelier' dc, SN training and policies for Scouts etc, cinema using one of those cards / SN friendly showings, how to get a queue pass at a theme park,

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inappropriatelyemployed · 14/05/2013 19:43

Thanks. I am going to focus on SEN and education but I might be able to cobble together a page for DLA etc too.

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MareeyaDolores · 14/05/2013 19:52

Yep, as DLA seems to be the main source of SEND assessment funding Grin

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MareeyaDolores · 14/05/2013 19:54

The triple P is sort-of educational,
ewin that it neutralises the 'no-SEN-you're-just-rubbish' argument.

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