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SN children

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

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Original poster

Welcome to all our new memebrs

136 replies

ReclaimingMyInnerPeachy · 21/01/2011 11:04

I will duplicate this thread in chat as well, JIC.

Some of you will have happened to pop by just now; welcome, and be aware things will calm down soon.

others will have come from the publicity- hello. If it is advice you need shout, message, if we cannot help we absolutely will know someone whose job it is to do so; if you want to help- thank you ; if you just want to be part of a supportive board, well come on in.

A few of you may be journalists: understandable, you have to pay the bills like the rest of us.
Please, I ask you to respect the dificulties that carers and aprents of disabled children on here face. Some will only have just learned their child has SN, or be facing real fears. Others have additional hardship s to deal with also. I hope you are motivated by a want to help people with challnges and that's great, but please be aware we are not hare to inform but to get advice or give it.

Thank you

OP posts:

devientenigma · 21/01/2011 23:10

Have I missed the wine and choccies??
Had a good week, though anticipating a not so good weekend and dreading Monday!!

SummerRain · 21/01/2011 23:12

superfantastic... ds1 wakes up on a regular basis complaining of 'rainbow hands'.... lord only knows what he means but it bothers him enormously

superfantastic · 21/01/2011 23:24

Im sure Amberlight did post on a thread about seeing rainbows last year??

Still got wine to share here but no choccys :(

SummerRain · 21/01/2011 23:29

hmm, must ask her next time I bump into her.

I have choccies but no booze, i'll swap you

chickchickchicken · 21/01/2011 23:31

hi,very recent member (i did start a thread about pc world refusing to repair ds laptop yesterday) and thought i would say hi here.

i have a ds with aspergers syndrome, dyspraxia and severe dyslexia. he is 18 and at an independent special school. we have been through the usual tribunals over the years to fight for provision.

i used to be a full time foster carer of kids with disabilities and a family link carer. due to ill health havent done this for about 5yrs but very happy to share my experiences of the system as a service user and a worker with children with disabilities team (though be warned this may be depressing!!)

superfantastic · 21/01/2011 23:35

Welcome chick! :) I hope to see you on the boards now. :)

What booze would you like Summer? Wine, gin or beer?

chickchickchicken · 21/01/2011 23:36

*oops meant to say ..share my experiences if that would help anyone
dont intend to just share all experiences - though could write a book or two!! you have to live through it to really believe the system is so rubbish

SummerRain · 21/01/2011 23:49

anything will do at this point... horrible day behind me and a long weekend ahead.

enjoy

SummerRain · 21/01/2011 23:58

chick.. That's another reason I feel out of place in the SN section. I live in Ireland and so far all the HCP have been incredibly supportive, fast acting and share information freely amognst each other. The only issue has been the school but even there the problems have been minor and easily resolved so far.

ds2 is not yet 2 and has already seen 2 differant consultant paeds, 3 SALT including one who specialises in sign language and is training the whole family and he's being referred to a child psychologist and ENT surgical consultant. We filled out his assessment of need this week and according to the information provided it should be completely processed in 3 months. I went to the SALT last week and asked about learning a few signs and within 2 days she'd sent the assessment of need forms to me and arranged for us to start the training even though technically we're supposed to have to wait til the process is complete before getting the services asked for.

And all this is on a medical card... we have no insurance. I can't fault the care he's received so I feel really fortunate compared to those of you in the UK who have to fight every step of the way and don't really feel I can compare out minor struggles to what people on this board ave to cope with

tallwivglasses · 22/01/2011 00:18

Summer, you shouldn't feel out of place.

SummerRain · 22/01/2011 00:25

thanks tallwivglasses (love your nam btw ) I still do though, all three of my kids function within 'societal norms' and we receive so much help.... compared to countless others on this board we're so indecently lucky i feel embarrassed!

chickchickchicken · 22/01/2011 00:29

summer, please dont feel out of place.
all experiences are relative. i feel so lucky compared to lots of people i know.
even knowing another parent hasnt had to fight for provision is uplifting.
even though i had to fight i still feel lucky in that i knew how to fight.

devientenigma · 22/01/2011 00:49

Well I'm off to bed with my dreaded thoughts about Monday am. Have fun making friends everyone.

tallwivglasses · 22/01/2011 00:57

The SN topic helps parents to fight, and posters here well-know you need to fight for bloody everything. Someone on SN's been there already - and it helps, it really does.

rettmum · 22/01/2011 17:20

Hi gilly3 we can;t access aiming high either dd is has high medical needs and the trips they take them on are too long and too much travelling etc.

gotchababe · 22/01/2011 17:24

Thank you for the welcome. I have left posts on other threads. x

AtYourCervix · 22/01/2011 17:27

Hello all (only 24 hours late - not bad for me!)
I'm not new but recently namechanged.
Have DD1 (nearly 15 NT) and DD2 (nearly 13 - possible AS waiting for diagnosis) DD2 is not speaking to me this evening but genereally crashing around breaking things. I gave up wine last weekend but feel the need this evening.

signandsmile · 22/01/2011 18:52

Yay! The willy song got an encore! (am immensely proud!, tho not as proud as ds is of his willy!)

had MiL here yest today and tomorrow, which has been nice, but hard work, (not cos of her cos she is lovely! but cos we have been taking her out and tidying up and cooking, instead of just going bleuugh.... at each other like we do at the end of the week normally.

I use the phrase normally very loosely of course,

TheCrunchyside · 22/01/2011 21:00

Hello all new members.

i've been on mumsnet (mainly lurking!) for five years but it came into its own when ds got a diagnosis of global developmental delay 18 months ago.

since then (and as is often the way with special needs) he has added diagnosis of dyspraxia, absence seizures and a verbal dx of ASD. We're awaiting various other tests but hoping not to gain any more labels!

at each turn i've been able to learn so much here and it really helped me to get a decentish statement for school.

I don't post much as dip in and out due to work and rowdy toddler. It is great when new people post their experiences and questions.

gilly3 · 22/01/2011 23:38

hi crunchyside,don,t get hung up or upset by the label thing,you,ll find along the way the profs are always trying to make our kids fit into boxes that they just won,t go into.our kids are unique,like every other
althuogh our son is autistic,he is not typical,which is what i am trying to say in a long winded way,the label is a base but that is all it is,profs will tell you your child will be like this or that,who knows????
wish you luck for the journey.

mariamagdalena · 22/01/2011 23:42

Hello
I've been on here for about 2 years (though recent namechange). ds1 has adhd & ?asd. At first, I felt I shouldn't post because others' dc had more severe challenges. And then I realised our commonalities were far greater than our differences, and if SN parents didn't work from that basis, all our children would miss out. And there are days when it's saved what's left of my sanity.

tallwivglasses · 23/01/2011 00:01

Hi Maria - and everyone.

I've just had a night out for the first time in ages.

If you possibly can, do it! (it's good for the soul )

tallwivglasses · 23/01/2011 00:03

Anyone got any songs?

tallwivglasses · 23/01/2011 00:06

Devient - Alreet pet?

ouryve · 23/01/2011 00:11

Oh my god. Drunk Geordies? :s

And not a coat in sight, of course.

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