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

Original poster

We have an appointment with DK! :-)

38 replies

snowgirl29 · 08/07/2015 16:32

Very surprised (pleasantly!) at efficiency of her team. Emailed a while ago. Got a reply asking for details of problems etc. Sent off. Didn't hear anything for a wee while. Emailed again. PA assured me that DK was on AL and would be in touch shortly once she'd triaged the referrals. I was told there would be a long wait. Emailed back today with an appointment for next month! Very pleased but also very nervous.

Been fobbed off many times through the NHS and school system. Anyone who has seen DK. How much weight does she apply to school reports? Part of the reason we've had such a woeful time is because of Schools insistence that he is 'absolutely fine'. (depends what your definition of fine is!) Hmm
Are we going to be forking out this fee just to be told the same thing? Confused

OP posts:
2boysnamedR · 08/07/2015 21:27

She didn't look at any school reports. School did a few questionairs thou.

She was worth seeing

Original poster
snowgirl29 · 09/07/2015 13:14

Thankyou 2boysnamedR. Sorry because im sure you've already told me but did she diagnose your dc?

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2boysnamedR · 09/07/2015 15:02

Of sorts. He had a diagnosis before and that is she backed up.

I was thinking he had asd too, as he is - ahem - "interesting" so say the very least. But she found him to score above asd criteria, he is missing key traits so not autistic.

He has had " shows signs of Dcd", "disordered language" etc before which LA has not accepted as dyspraxia or a language disorder. She spelt out that he has Dcd, Dcd is dyspraxia, he has a language disorder. So about 15 reports have been pulled into one and I know he's not got asd, but he has some strong asd traits.

He's complex. She said she sees one child a year like him. I always thought he was autistic but nhs never really looked into it. I'm glad I finally know

ShadyMyLady · 09/07/2015 16:48

I was hoping this was you when I opened the thread!

DK diagnosed my DD with ASD last week, well worth it imo.

I had an appointment with CAMHS this morning who said the diagnosis would be accepted and to chase up the report so school can finally be put in their place!

Glad you finally got an appointment Smile

ShadyMyLady · 09/07/2015 16:50

Oh and she was obviously well aware that children mask, the school said my DD is fine and there is nothing wrong with her. They still filled out a form which I don't think she paid much attention to in the end.

She will take your word over the schools.

Original poster
snowgirl29 · 09/07/2015 22:05

ShadymyLady thankyou. I'm nervous now. It will all depend what ds is feeling on the day to how he will present. He will either be bouncing off the walls or won't say boo to a goose.
This is exactly what I said to the school. No body has ever done these tests and at least if they're done we can say we've done the best by him.

2boysnamedR I'm glad you've got some sort of answer. I Reallhave pe dk is as good as People Say.

We have camhs before the aopointment and I already know that will be a waste of Time. The Lady from the behaviour team will be there. You Know. The same one he didn't make eye contact with or talk to and who he growled at, and they suggested another parenting course all they saw. Yes them. Hmm

OP posts:
Original poster
snowgirl29 · 09/07/2015 22:06

Apologies for spellings errors. Keyboard has mind of its own! Grin

OP posts:
ShadyMyLady · 10/07/2015 08:28

We saw cahms yesterday for the first time and they were brilliant. It's awful how they differ so much, it's a complete postcode lottery.

I think DK is used to seeing all types of presentations, my dd barely uttered a word throughout.

You'll be fine, go prepared with what you want to say.

Original poster
snowgirl29 · 11/07/2015 11:48

I printed the forms off from the email that DKs sec had included in the Email and took them in and gave them to the senco by hand yesterday. Apparently his class teacher will be filling them in.

I couldn't forward the email to the school as requested.
They were going to send them off by post but I was thinking I'm going to be assertive on Monday and ask if they could email them back to me. As it there sent by post and they don't arrive I can't exactly ring up mid August and ask the school to send them again! Grin

I couldn't forward the email on as my aunt was in the Conversation saying "don't go into all the Schools games and tricks they're pulling but do be clear to tell dk they are NOT on board with you". Had no idea how to alter the conversation view! Blush
I'm very impressed already to be honest, the questionnaires are lengthy and detailed so it's a lot more than just a basic big standard report that was sent to the Comm Paed. One of the Qs she asks what the school think is the reason behind the DCs behaviour. I'm intrigued to see what they write here because they have hung on to 'it's because of his speech delay" for years. Until the Speech Therapist said no. I don't agree. Then it changed to a parenting issue Hmm
This is going to sound awful of me now so sorry, but I actually think travelling to London will be worth it either way. They all say DSs speech has come on tremendously but at the same time, a lot of people still struggle to understand him. I'm expecting DK to still notice some of the struggles he will have as my Gran would say 'they talk properly down there' so will pick uP on it quicker.

Hope my post makes sense!

OP posts:
2boysnamedR · 11/07/2015 14:14

Ds has a expressive and receptive lang disorder. No one sees that - except the professionals who can see it in a instant.

It will be worth it. Nhs pead is still debating dx ing what he's already been dx with! She didn't even read his notes. My second opinion request was blocked. I don't need to care any more or worry any more or share this with his pead. It's finally done and dusted now.

ShadyMyLady · 11/07/2015 17:46

Is it the Social Responsiveness Form?

I had problems getting my SENCO to send it to me, we had a heated conversation where she said she could not send a form about a child to its parents and that it had to go direct to the clinic. I reluctantly gave her SP's email address and she sent it on to her. SP then forwarded it straight on to me because I said the SENCO refused to do so. I then had great pleasure in sending a passive aggressive email to the SENCO saying no need to forward the form on to me as I already had it!

Don't worry or panic about it, us mums know best. DK will see straight through the school and will believe everything you say.

Original poster
snowgirl29 · 12/07/2015 16:28

Yes it's the Sr from shadylady. Looking forward to what they say if they don't give it back to me as I want it returned electronically to SP so it doesn't get 'lost' before the appointment. Ironically. The first report from school for the CP went missing. Hmm

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BirdingWidow · 17/07/2015 19:52

Hello, I have just stumbled on this thread... May I ask who DK is? I have a DS who is coming up to 3yo and I am convinced he has some sort of autism or social communication disorder and so is his nursery. I don't even know where to begin - am taking him to the GP but not sure where I want to be referred. Is there someone you recommend? We are in London. Many thanks

2boysnamedR · 17/07/2015 20:50

Daphne Keen. She works for St George's but a few of us have paid to see her privately after getting fed up with the NHS route.

Hopefully you won't need to go private. My three year old was diagnosed on the NHS by a neuro developmental pead. Look on the NAS website, there is list of doctors who can diagnose in each area. I would start by asking to be reffered to your area person on the list. One moment I will post the link

BirdingWidow · 18/07/2015 21:40

Thank you so much, that is really helpful. I have had my concerns for a while but have just had 'the talk' from nursery that puts together the social problems he is exhibiting there with the other aspects of his behaviour that I see at home. I am feeling devastated and scared, just need to get started on the process to see what we are up against.

OP, I hope that your appointment gets you the answers you are looking for, and I am sorry for derailing your thread!

2boysnamedR · 18/07/2015 23:53

How's your health visitor birding ?

Try to get the nursery to write a list of concerns to take to your gp or health visitor. Ask them to refer you to the pead ( ideally a nhs one from the link above, if not you need a developmental peadiatrition or neuro developmental pead).

Now your list from nursery might be depressing but try not to worry. It's to highlight possible problems. You dc has many lovely qualities but remember that's not the pead will worry about Grin

I could be a phase too. Three is hard work! But no harm in getting it checked out.

Stick around for help here if want / need it

BirdingWidow · 19/07/2015 19:18

Thank you so much 2Boys. I have no idea about HV, not seen one since DS had his 1-yr check (and that was the first time since DS was about a week old). We have a nice GP, I will go to see her once nursery have told me their concerns properly (we were about to go away on hols so it was a brief opportunistic meeting - need to follow up this week now we are back). I have been documenting what I observe about DS for that consultation but main thing is lack of conversation - he has ample language skills but just recites stories / Thomas episodes verbatim, does not relate to us other than issuing instructions. ot has just hit me like a ton of bricks that other than adding to his vocabulary, that hasn't progressed for about a year. And lots of repetitive and obsessive behaviour. And a whole load of other details. I will follow your advice, many thanks, and may also start a thread asking for some positive perspectives because I am feeling really devastated and just want to hold onto the joy I have always had in him. It's hard when you feel the rug being pulled out from under Sad

AngelicaM · 19/07/2015 19:23

Just to say quickly as doing bedtime that I would try and get back in touch with a HV, you can do GP too, ours just got our HV to contact us when we raised concerns, personally found HV a lot more use than GP, until they're 5 they're under HV care as I understood it here. Good luck xxx

BirdingWidow · 20/07/2015 21:44

Called the HV today. She really listened, said there is cause for concern and is going to refer us to the diagnostic clinic. She is also coming to visit us this week. I feel both better (to be taken seriously) and worse (to be taken seriously!) but know that I need to do this for my beautiful DS. Thanks so much to those who responded

2boysnamedR · 20/07/2015 22:10

Can relate to feeling to be listened too yet devastated that it should be listened to

PolterGoose · 21/07/2015 19:26

This reply has been deleted

Message withdrawn at poster's request.

AngelicaM · 21/07/2015 21:46

Bird, I think it's the first of many bitter sweet moments, I went in all guns blazing to argue my case to find no one had any doubts?! I was knocked for six by seeing the sympathy in the first paed's eyes when I thought he'd think I was crazy. It's so hard, but you'll feel so much better for moving things forward! Good luck x

BirdingWidow · 22/07/2015 19:58

You've all been really helpful and kind, I am on the edge of tears all the time but it is good to know I am not alone (I don't know any parents in RL who have been through this).

DopeyDawg · 28/07/2015 23:59

We had a 'different' experience with DK which I am happy to share by pm if anyone is interested?