assessment clinic did not go well :(

[helewele]

I thought I had prepared myself for the worst, but I really hadn't!

DD is 2.2 with no language skills and a lot of asd traits. Have been fighting to have her seen for months, with no one believing anything was really wrong except language (making me feel like a munchausen's mummy) so expected the same at the clinic today.

Had set myself up for either a fight for further input or a definate diagnosis of Autism, but was told my DD has 'severe and probably lifelong learning disabilities' by the paed. I was really gutted as I wasn't expecting this. Apart from her lack of language (and understanding) she seems so bright. I just don't know what to think. She has been refered onto a specialist asd clinic, but the paed doesn't think this will be diagnosed - she said possible learning disabities with social problems and autistic traits, but she doesn't feel it is really autism.

Also told today that she will def have to go to SEN nursery and school as this would be the best environment for her, but how do they know already? She doesn't start pre-school 'til Sept '09.

I just feel like someone has pulled the rug out from under me - I mean, where do we go from here?

Thanks if you've managed to get to the end of this, just needed to let some of it out

Helewele x

Gosh that's damming for a 2 year old. Remember these people do NOT have crystal balls.

My ds1 has severe learning difficulties and severe autism and he's bright as a button. It's not incompatible (despite whatever the pros tell you). There are lots of positive books I could suggest for you, but it might be a bit overwhelming right now so I'll do that later.

Don't worry about the SN nursery- ds1 has had experience of mainstream and SN environments (he's 8 now) and the SN experience has been brilliant. The ms experiences very very mixed and hard hard work.

Where are you? Oh I've just seen NI. We're heading over there in April. We're only there for a week but if we're nearby perhaps we could have a mini meet up (We'll be visiting the North Coast and Belfast).

Your dd is gorgeous btw..... just seen your profile

Hi helewele,
I have a 3.6 year old (awaiting genetic test results) part of her SN is that she has gobal developement delays, she is about 10 months behind in her thinking, walked at 3 but still very wobbly, her speech is quite clear but she sruggles to form more than two words together.
I've had one of these shock appointments we have seen 5 peads all specialising in different areas. Every time it has set us off in a different direction. I agree how can she give such a clear non diagnosis?
As for SEN nursey, she can attend a main stream nursey with supported needs. The best idea is to approach your local county council an ask about early years SENCO.
Does she go to a playgroup?
My little one did attend a mainstream nursey but i found it not suitable, and i was lucky that their is a very good SN nursey near by. She has come on so well since going.
Good luck with the diagnosis.
mrsreevesx

Sorry the appointment was so depressing. I agree with Yurt - how can anyone be so categorical about a 2 year old....

Oh thats a very negative response, its good to deal with DR's that are honest & realistic but giving such predictions at such a young age is not helpful & possibly not very accurate either.
I'm not surprised you feel as you do.
DS2 has had a mixture of ms & sn preschool & is in ms primary (he's 5)its the right place for him at the moment.
At your daughters age he had no language & developmentally was at a 1yr old level, he is a very different child now.

It is good that they are referring to the specialist clinic, hopefully it will be the starting point to you & your dd getting the support she needs.
Take care of yourself x

It is very damning for a 2 year old,I agree.
Not uncommon unfortunately in my experience as a SALT (SN primarily). I don't konw why they do this.It makes me so mad.

Hele,it's good that you have sensed that something is up and got on with dealing with it. As for the rest,remember that it is very early days and see how everything unfolds.

Noone has a crystal ball.
Keep posting here,it is full of useful support and help.

XX

Thanks everyone for your replies, it's good to know someone has been there before me iyswim? don't know anyone in RL with DCs who have developmental problems, so although I don't post a lot here, I am a persistant lurker

Yurt - if you had some free time, I would love a mini meet up I have bought one book 'Autism Spectrum Disorders - the complete guide' by Chantal Sicile-Kira, but the books are so expensive, and my local library doesn't keep anything like this - do you know of any organisations which have a lending service?

I have found to date that ASD problems seem to cause a lot of expense; kitting out the developmental intervention box cost a fortune, plus there are books to read and treatments to consider!

How do you all manage? I am just finding it so overwhelming.

x

What do yuo mean by the developmental intervention box?

Oh lets arrange one helewele. I am dreading the trip - would be lovely to have a mini-meet-up - and we have the same taste in music

Books are expensive. Perhaps ask your local library about inter-library loans. They may be able to get books for you. Also check second hand books on Amazon- then when you've read re-sell on Amazon. You don't have to pay a fee to list, only if the book sells.

It is overwhelming, but take it one step at a time. And as you read/talk to pros/meet other parents remember every child is different and you know your child best. As they grow it becomes easier to lift out the bits that are relevant to you, whilst ignoring/storing away the other bits.

You may be able to complete a book request form at the library in case they'll order it in?
I know that they used to at my grandmother's library (any book she wanted, they'd get for the library) but that might be because she was formidable and 90.

I have asked at the library, and they won't order any books because there isn't enough 'need' for them!

Moondog - developmental intervention is a pilot service in our area. Basically a lady came out to the house every other week with things to help dd master normal 2 year old skills (matching objects and pictures, threading etc) and to learn to interact with me 'on my terms' rather than only interacting when she wanted something/using me like an object. She really enjoys this now but was a nightmare to begin with. I had to pay for a lot of the stuff that was needed eg matching farm animal from ELC, pop up toys, shape sorters and threading thingyies. It probably only came to £60 all together, but it's a lot for me as I'm a single parent and I rely on benefits. Is this service not more widely available in GB?

Yurt - I'd love to meet up, it'll give me something to really look forward too can I ask why you are dreading the trip?

also should say moondog this service is attached to the assessment clinic. DD started last week in the developmental intervention 'classroom'. It's like a regular pre-school room, except dd, DIS lady and myself are the only ones there. Last week she started learning how to follow an object schedule(?) on the wall so she could go to the right area in the classroom. She was able to follow pretty well once she was shown what to do [proud mummy]. I have been working with her at home everyday since Oct with this box, for maybe 5 mins, and because she came on so well, she has got into the classroom 2 months early (usually have to be 2.4)

I think it's a fab service, and I ahve noticed a big change in DD's behaviour since we started.

PS my SALT was lovely today I was terrified she was going to give me a right telling off for starting makaton with DD but she said 'keep up the good work' hope all SALTs are as nice!

I see Hele.

Once you start getting a firm grasp of the principles you may find that you can get a lot of what you need in charity shops (assuming you have the time to pop in regularly). The best therapist i know works almost entirely with second hand games and toys that have cost her pennies.

Not saying it is easy but don't be swayed into thinking that you need special pricy equipment.Another option as she gets older is to ask family and friends to club together to get her something that is particularly needed. Lets face it,most kids have far too much (I have an entire box under my bed bulging with unopened Christmas presents for my children who are by no means spolit) and most people would be glad to think their money is being spent on something that will make a difference.

A lot of the families i work with do this and it makes everyone hapyy.

Oh Hele, it sounds great,the stuff that you are doing. Fantastic that she is already following a visual schedule.Very smart!!

Makaton is fantastic.No salt in their right mind would 'tell you off' for using it. Tonnes of evidence to show it aids language development.

I also have a baby signing business separate to my work as a salt and we are now starting to have children with SN participate which is wonderful for us all!

Oh gosh, Helewele, I agree that that is so damning for a 2 year old. It also puts a big lump in my throat because we're starting the whole evaluation process with our 21 month old DS, next week. DS1 was only diagnosed with autism 6 months ago, so this one's a bit of a crush, really.

Autism books are damned expensive. I have the one you mentioned and found it very useful, though. I bought Autism for Dummies for DH because he found that more readable and less intimidating. I've found the Amazon marketplace to be the best place for getting books at a reasonable price, specially since I'm not necessarily interested in the entire content of all of them.

Do you have a toy library near you? That might help with the need for specific toys. Also, keep an eye on ebay. People sometimes do big clearouts.

THe 1st thing the DIS lady said when she came into the house was that all the toys except 1 small box had to be put away! I think it has helped too, as she will actually look at the toys now instead of just emptying all over the floor all day.

I asked everyone to chip in for new stuff at christmas, and most were more than happy to help my brother and his gf even bought me book tokens so I could get some reading material.

I will have to get looking in the local charity shops - thanks for the tip.

Congrats getting started in baby signing, esp with SN kids. It has certainly reduced frustration in this house. This time last year, my DD could say 12-15 words which disappeared by March, now we have 1 word and 5 signs, but it's still progress to me

That's good advice re the toys Hele.
Remember that you could always ask your salt if she has stuff to read (or other professionals) I lend my stuff out and/or help people plan what to invest in.

We do the clubbing together thing....

I'm dreading the trip as we can't really fly with ds1 - so it's a huge massive car journey to Scotland then ferry- we live in Devon! Also I'm not sure how it will go once we're there....... We haven't done the trip in almost 4 years...... Where are you (actually CAT me if you want to chat in private, or if you can't CAT let me know when you email nezumi35 at googlemail dot com and I'll log in to pick up the email then give you my normal email address. )

26 months is, in my opinion, far too young to predict how a child is going to do, so the paediatrician's prognosis should not be seen as set in stone.

regarding books - I know my mum has in the past ordered books from the british library to come to her local library - will ask her for more info about this - might be a way of getting access to some decent ASD books. There's lots of interesting info on Donna William's website - www.donnawilliams.net.

It sounds strange that anyone even a paediatrician would be able both to rule out ASD and make such a sweeping pronouncement about her future at only 26 months. My DS was seen by a paediatrician at at a CDC who, although she was very nice, did not seem to know very much about ASD other than in very general terms. She discussed all sorts of symptoms with us that my DS does not have, she was unable to suggest any means of helping him and implied that the future was fairly bleak. By contrast he was actually diagnosed ASD at an NHS hospital by someone who is a world expert in ASD in children. Although he only observed DS for about an hour, he was able to give us a lot of extremely useful and specific advice based on what he saw my son doing. Despite his expertise, he told us that it was impossible to make any predictions for his future ( he was 3.6 at the time). I think it is often the case that the more knowledgeable someone is in a particular field, the more likely he or she is to know their limitations and to reserve judgement whereas someone at a much more junior level will just plunge in and give their own 'off the cuff' opinion.

Hi everyone,

sorry I haven't been on today, but been spectacularly busy

Thanks for all your help, support and comments - I'm actually feeling better about things today, and have a more 'lets just wait and see' attitude. We had another great afternoon in the DIS room, and DIS lady says that in just 2 weeks she is making great progress, so just try to be positive, and have dd working to the best of her ability and I figure I can live with that at the moment.

I guess it's just going to be another stretch of being on the waiting lists until the rest of the referals and services can come through.

A really huge thanks to you all,

Helewele xxx

That's really really good to hear Hele.