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SN children

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

Thankyou mumsnet and cerebra

11 replies

OneInEight · 13/03/2013 12:01

Just got a letter through to say we have been awarded dla for ds2. It wouldn't have occured to me to even try without the advice given on this site so thankyou. For anyone still thinking about it the cerebra guide really helps to fill in the form.

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NoHaudinMaWheest · 13/03/2013 13:33

Oh good news.

sweetteamum · 13/03/2013 13:35

That's great news OneinEight

nupurkumarika · 13/03/2013 13:39

good stuff!

Ineedmorepatience · 13/03/2013 13:47

Well done youGrin

I havent even attempted the form, my sister and friend keep telling me offSmile

EllenJaneisstillnotmyname · 13/03/2013 14:49

Not looking forward to DS's renewal in a few years. Well done, oneineight!

ilikemysleep · 13/03/2013 15:03

I filled in the first twenty five pages over one evening, clicking on the page save after every page. The next morning the whole blimmin lot had failed to save somehow and the entire thing was blank. I haven't managed to fill it in again...

SmiteYouWithThunderbolts · 13/03/2013 15:10

That's great news. I've been advised to start the claim for ds2 while we wait for his diagnosis but I've been too afraid of the form to try!

MerryCouthyMows · 14/03/2013 02:33

I have JUST finished DS3's application. It's being sent back tomorrow. I've never bothered with the older DC's, thought it too time consuming and difficult as they don't yet have FORMAL ASD dxd, though a whole host of other dxd issues that point to possible ASD.

The Cerebra guide certainly helped me, and we shall see if DS3 gets awarded any DLA.

He has multiple life threatening allergies that limit him from playing in a park, going to toddler groups, going to preschool (no MS will touch him when the allergies are combined with his other SN's, and even one SN Nursery turned him down...).

He was dxd as 'hyperactive with a high probability of ADHD' at just 21mo. He has NEVER slept for more than 4 hours at a time in his whole life. He is awake for a 3-4 hr period in the night, every night. He climbs out of the pram, and runs in the road, climbs over stairgates, throws himself off things and out of windows, is reckless and has NO sense of danger or self-preservation.

His assessment for Autism will be done in May when he will only be 27mo.

He also has over a years' worth of receptive and expressive speech delay, and communicates using a combination of single words (very few), Makaton, PECS and gestures.

If I don't at least get high rate care to cover his night time needs when he needs constant supervision from the moment he wakes at around midnight / 1am until he goes back to sleep around 3am / 4.30am, I WILL be appealing.

I don't expect to get anything towards his mobility yet, even though he requires far more supervision outside the house than other 2yo's, because he isn't 3yo yet. But if I get anything for that, it will be a bonus because then I can buy him a Crelling harness that he can't get out of, and it might help.

I'm hoping also for the HRC because of the extortionately stonking cost of buying specialist food to cater for his allergies, as it costs me £60-£70 a week just for HIS food alone...

We shall see!!

streakybacon · 14/03/2013 07:11

Well done Grin.

everynameistaken · 14/03/2013 09:19

Don't forget to let tax credits know that you have been awarded DLA - if you haven't received tax credits before you may get some, or if you do get it you are likely to get more.

There are lots of other little things that help too. Our LA have a passport scheme which means a carer gets to get in free at local cinema (although some chains of cinema's do their own version of this). Football matches - carer gets in free etc etc.

Family fund is another one. Not sent my application off yet - still putting it off. Google it for details.

Hope this helps Smile

OneInEight · 14/03/2013 09:50

Thanks for advice EveryName. I will look into that.

Merry and Smite - we don't have a formal diagnosis but sent off school records (showing behaviour) and a letter from CAMHS summarising his traits and stating testing for an ASD was advised as proof which was obviously sufficient as we were successful.

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