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SN children

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

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Original poster

DS went to school! Ok it's a PRU but he went to school!,

40 replies

starfish71 · 05/09/2012 16:41

Am so proud of DS1. He is 13 and has been out of school since Dec, been having home tutoring since May.

He has Aspergers (undx but dx nearly there), very bad anexity and has barely been outside the door for months.

We have got the statement sorted, not brilliant but it is finalised, he has a place in this small PRU (I know but it is looking promising and there was no other option at this time).

He decided yesterday that he would go in for a full day, his lovely tutor took him and brought him home (issues with going in transport but this will be sorted) and great communication from the staff today!

Ok he didn't eat all day and has come on smiling but shattered, currently fast asleep! BUT he went, he did it!

Am so very proud.

OP posts:

devientenigma · 05/09/2012 17:52

At DS's heart appointment yesterday, the cardiologist said, you came with the social worker last year, have they palmed you off with another already lol

I told him no this is the home tutor.

He asked her a load of questions, then went on about the conflict in what she has been told and said. He then went on to say if he is roughly 3/4 age equivalent, what child that age doesn't dress (he was in his PJ bottoms, no top in his wheelchair so didn't need socks or shoes) what child that age doesn't do this or that and fights enough to have nurses injured and bleeding, that you can't compromise, redirect, give an incentive etc, nothing works.........so if they want to put it all down to cognitive delay due to being down syndrome it should be across the board and it's not.

He was foaming.

TheLightPassenger · 05/09/2012 17:52

the Maudsley is down in London, dev, but is probably amongst best in country for child mental health, I know it is for adult OCD/anxiety.

devientenigma · 05/09/2012 17:56

Will keep it in mind for if this all fails, Light.

Really hoping we are on a slow path to getting there............I just hope I haven't said that for too long.

devientenigma · 05/09/2012 17:57

sorry everyone ignore me hijacking...........it's still a well done positive thread

whatthewhatthebleep · 05/09/2012 17:58

I'm so pleased for you and DS...such a major corner he has just turned....I hope it continues and so does his smile....so good to hear good stuff about our kids.....

Faith....it gives us all some faith and some strength to keep us going.....

Thank you for sharing you super news

TheLightPassenger · 05/09/2012 18:03

it's a slow road for you dev, but the cardiologist sounds onside, which can never do any harm, and the Elizabeth Newsome referral sounds promising

pinkorkid · 05/09/2012 18:06

Devient, www.slam.nhs.uk/our-services/service-finder link here to list of services the maudsley offer - there may be more than one department that could potentially help ds. I think if gp writes a referral letter perhaps to the michael ritter centre(autism focus) initially they decide which dept. is most appropriate. Then you just have the battle for funding with your pct but sounds like you would have backing of gp and cardiologist.

AttilaTheMeerkat · 05/09/2012 18:06

Well done Starfish Junior:)

CillaSlack · 05/09/2012 18:20

Hey Star that's great news! So glad he is enjoying it. As you know my ds hated it at the PRU but the small class size should really help your ds.Hope he stays happy.

Original poster

starfish71 · 05/09/2012 18:57

Devient, Don't mind the hi-jack at all! Just keeping my fingers crossed for you that you are now on the right road to getting proper support x

Thank you Attila, Pink, Cilla, Whatthe, lightpassenger and everyone else, it is good to share good news for a change!

DS is awake now, still in a good mood so roll on day 2! :)

OP posts:

ThoughtBen10WasBadPokemonOMG · 05/09/2012 19:06

well done starfish!

devientenigma · 05/09/2012 20:22

Thanks star hope it goes well for your DS and you x

mariamma · 06/09/2012 14:03

I would be cheeky and email or otherwise track down one of this lot they seem to know what they're doing.

mariamma · 06/09/2012 14:19

And star... Wow! What a great start, and it sounds like the PRU are really switched on.

Walter4 · 06/09/2012 15:15

Devient, my son was seen at the Newson centre this summer and confirmed PDA . We are already on day 4 having problems at school. Not sure I'll even manage to get him in tomo. It's exhausting and gut wrenching, I'm at a loss how best to help him.
They are amazing at the ENC, my GP referred , he just trusted me , hardly knows my son. We went as self funded, our area does not diagnose PDA and I needed the right diagnosis not a close fit.
Hope things get better for you.

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