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

2 people in the last week have asked me whether my ds has adhd!

309 replies

essbee · 20/02/2005 19:23

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essbee · 14/03/2005 18:54

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Jimjams · 14/03/2005 20:12

agree with Davros- I recognise this behaviour- as it is very familiar to me. You really need to get a referral to a developmental paed to find out what is going on. maybe the GP will refer?

ScummyMummy · 14/03/2005 20:22

I hope the GP will refer. Sounds urgent. Hope things stay settled tonight, essbee.

(And well done anorak for calming the wee one down.)

Davros · 14/03/2005 20:39

Good luck with the GP Essbee. I know what its like to feel like a hostage in your own home, it wasn't so much the intensity of the "episodes", although that was bad, but the unpredictability. We couldn't go on like that and DS was so unhappy. Medication has worked for us but of course it was something we'd rather not do. Can you "steer" your GP in the direction you want whatever that is (Dev Paed, meds....)? Log on in his office and let him read this thread.

JaysMum · 14/03/2005 21:23

sending you {{{{{hugs}}}}}}}essbee....try and stay calm and stay strong.

essbee · 14/03/2005 22:20

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Davros · 14/03/2005 22:28

Hmm, not easy Essbee. Maybe just decide to try to get one thing at least, e.g. referral to CDC and stick to that and see what happens. Nothing can be worse than that idiot you've already seen and i think this would be very helpful to you.

Jimjams · 14/03/2005 22:46

I think you're right to look for the "cause" first of all. When you know what you are dealing with then you can deal with it appropriately- before that its a case of stumbling around in the dark really. A referral to the CDC is probably the best thing to be pushing for at this stage- then you can get the right people involved to give help and advice.

beccaboo · 14/03/2005 22:46

Hi Essbee, are you OK? Sounds like you are having a rough time. I agree with Davros, it's probably best to channel your energies into one thing, ie. getting to see a paed/CDC. If they can tell you what's going on with ds, it will make everyone else take you seriously.

It must be incredibly stressful

Davros · 14/03/2005 23:10

One good thing Essbee, I've never been agreed with so much before!! Hope things have settled down and you can get through to Thurs for the appt.

ScummyMummy · 14/03/2005 23:30

Agree with Davros.

Because she likes it!

And because she's right- get that wee boy to the child development centre, essbee. And have a good night.

LIZS · 15/03/2005 08:03

I'm sorry this is still so difficult for you all and that Camhs were so useless in offering any advice and support.

Is it worth asking the school if they can identify anything which may have triggered his behaviour yesterday - be it an overly excitable lesson, what he may have eaten (does he have school lunch ?), any skirmishes with others, however minor etc.

Would it be possible to ask GP for an earlier appointment than Thursday ? I'm sure it seems an age away .

Good luck in the meantime and hope things are better this morning.

essbee · 15/03/2005 17:24

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Davros · 15/03/2005 17:40

Oooh Essbee, interesting idea about BIBIC. I'd say go for it.

mummytosteven · 15/03/2005 17:42

excellent idea to use the money to go private to get some quicker expert help about DS. obviously not got a clue as to whether BIBIC or anyone else would be more appropriate, but I am sure that agreeing with Davros is a safe enough option.

Jimjams · 15/03/2005 18:19

I think if you could get a private paed appt it might be more use than BIBIC at this stage. BIBIC would be great, and would do a thorough assessment- but there will be a wait and they can't diagnose- although their report would help push local proffesionals. They would definitely be worth having a telephone consultation with though and the first one is free.

Davros · 15/03/2005 18:32

I was wondering if a private Paediatrician would be a better way to spend the money but, not having done BIBIC, wasn't sure. So once you've had your GP appt you should decide where best to spend the money, a dx or even finding out there isn't an appropriate dx could be the best thing to pursue.

JaysMum · 15/03/2005 19:58

essbee....think its wise to find the cause before tackling school/staementing issues.....we did it the other way round....got the statement and are TRYING to get schooling sorted out for J.
Yesterday I had a meeting with J's new class teacher.....meeting went well but she pointed out to me that J's statement has been written and devised for a child who has no diagnosis so therefore how can his statement truely reflect and meet his needs???
BIBIC is a good place to try for support and advice. As JimJams has pointed out they can not offer diagnosis, bit will do a full assessment of your ds and their report would be really useful to help towards your supporting eviedence for statementing.
BIBIC are however able to get an EP to come on board and he will be able to assess and give a dx.
He did this for us, however at the time we saw him we did not push for him to diagnose J, we wanted a clear picture from him as to where J was at educationally because we thought very foolishly that the statementing process was about need and not label....very naive of us I know!!!!
Why not give BIBIC a call.....as Jim Jams has said the first intitial phone assessment is free.....so you have nothing to loose.

Good Luck Honey....thinking of you.xxx

LIZS · 17/03/2005 08:04

Good luck today essbee

pindy · 17/03/2005 11:37

Good luck essbee - I'm new but have read the threads - my heart goes out to you - but I'm afraid that isn't much use really!

JJ · 18/03/2005 18:18

essbee - hope you don't mind me posting all this, but know you probably want other opinions on the various assessment/diagnosis venues. I've talked to BIBIC and Elliot House and am going on my knowledge of the dev paed/SALT team.

BIBIC : as Jimjams has mentioned, they don't diagnose (I was wrong when I said they did). They will give a full assessment - ie, this is where he is in this time and place - and also a therapy programme for at home and at school. They also offer reassessment visits to update therapies.

Elliot House : the lady there told me that they mainly deal with autistic spectrum disorders. Usually people have a tentative diagnosis with a local paed or psych and are referred from there. They can diagnose adhd, but it usually happens when a local professional suspected autism, iyswim. It doesn't sound like the place for your son. The woman I talked with was lovely, though, so if anyone else is in the position where autism is suspected, it's worth a call.

The dev paed/ SALT team near you: as you know, I've been through this. They're great and offer a diagnosis. Socci has also been to them. We're two very different cases (in mine: some speech and language difficulties combined with behavioural issues and in hers: autism). I'm not sure what sort of therapy they recommended to her, if any, but in my case, esp with the behavioural stuff, the advice was golden. But they did just recommend getting SALT - nothing specific... of course, that has worked (just getting a good SALT).

Soooo.. if it were me, I'd go to the dev paed/SALT if you want a diagnosis and idea where to go for therapy and BIBIC if you want a plan of action. I'd go for the diagnosis first, if simply to know what it is that's driving him. But that's me and the above info is just what I know from phoning around and info packets (except the dev paed/salt, obv!)

Please, anyone feel free to add to/correct it!

jollymum · 18/03/2005 20:04

Essbee, read thread. OMG-you need help! Have you anyone day to day to help? Reading through another thread, maybe you could get a carer's allowance because your ds needs so much help and is sometimes a danger to you and your dd, (and himself) You MUST be entitled to SS help, FGS, come on, all you SN mums. There must be someone, somewhere to help, with respite or whatever? What about the social,/physical/emotional needs of your DD? Heap it on thick...let them know you're mad and hurting. FFS, I'll come down and help this weekend, honest. Maybe I could help, you're about 2 hours away from me, I think. I'm so mad and sorry for you, let me help. If I can't help, just give me a ring.. I can talk the hind leg off a donkey anytime...My 15 year old is violent sometimes and his 3 siblings suffer too.It's not the same but believe me I've done the divorced parent,crap mother rouine too! We're not crap mothers, our kids are not tuned into the wavelength that others are..I wish I could help more.Ifyou want my phone no, and I'm serious, really really, you can phone me. E-mail me at [email protected] and we can talk.

Jimjams · 18/03/2005 20:12

Were you abroad then JJ? I tried to take ds1 to Elliot house (we lived in walking distance from it) and they said they only took referrals from abroad That was over 3 years ago though.I do agree with JJ THAT getting/ruling out a dx is probably the best first step. If you get one it will help with access to other services and DLA etc.

jollymum- getting respite through SS is incredibly difficult (I started the process last June and it still isn't set up- and that's with a child with a dx of severe autism and 2 other siblings, and an agreement from SS that I need it). There probably are organisations that can help but I don't think SS are necessarily the people to help out at the moment. (Although anyone who knows better correct me please).

With a dx there may be access to special playschemes etc which would be a help, but I think the dx is needed first.

JJ · 19/03/2005 16:53

Jimjams, I just talked to them yesterday. She didn't say anything about referrals from abroad, but did make a clear point of having a local professional suspect autism as a requirement for assessment. They must have changed policies over the past couple of years.

Hope this weekend has been better for you, essbee!

Jaysmum · 19/03/2005 17:37

Jimjams. Elliott House will now accept referrals from dev Paed BUT also funding has to be agreed by the local PCT.This is the area we had problems with hence our private consultation is taking place with a CP recommended to us by Simon Baron-Cohen.