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diagnosis today

24 replies

sphil · 01/02/2006 18:10

Well, a year after we first took him for assessment, DS2 got his ASD diagnosis today. I'm relieved, really, as we have been expecting it for ages but I suppose a tiny tiny part of me was hoping they might say 'oh, he's just delayed'. Stupid, I know - I've known for ages that he's autistic. Haven't got anything else to say really, but just wanted to tell you all.

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Socci · 01/02/2006 18:19

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sphil · 01/02/2006 19:22

He's three, Socci. I feel a bit sad, but also relieved that we can now move on, as you say. And it now means we can access things like Earlybird. I suppose the sadness comes from knowing that it's a lifelong condition and worrying about his future, especially as an adult. Our paed today was very good though - she said to concentrate on the immediate future as the long term prognosis was so uncertain. There are some very hopeful signs - he's affectionate, is starting to show the desire to share experiences, starting to talk. He's a very happy little boy - his autism doesn't seem to make him afraid or frustrated. We have a lot to work with!

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tobysmumkent · 01/02/2006 19:56

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Socci · 01/02/2006 20:36

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jenk1 · 01/02/2006 20:46

pleased for you that you have a dx iykwim, because you will be able to access help.

My DS had his assessment last week and we get the results this friday, we are hoping for a dx as i cant for the life of me think what it is if its not ASD.

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Davros · 01/02/2006 21:10

Sad but good news iykwim sphil Apart from Earlybird, any idea what you're going to do? Is he in nursery? Any local SN p/t provision/schemes? We're all here to help.xxxx

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sphil · 01/02/2006 21:36

Thanks for all your replies - this website has been such a godsend for me!
Davros - he's in m/s nursery two sessions a week this year, with 1:1 support. The Early Years Service have been very supportive too - training his 1:1 and managing his IEP. Next year we have (with some trepidation) booked him into another nursery for a further two sessions, so he'll be doing 4 half days in two different nurseries, with 1:1 in both. The new nursery is linked to the m/s school which his brother attends. There's no appropriate special school for miles and the local Language Unit doesn't take children with an ASD diagnosis (though it does take 'children with autistic tendencies'- I know, it's mad isn't it?) So our best hope is for him to attend m/s school with as much 1:1 as we can possibly get. By sending him to the linked nursery he'll get used to the environment and meet lots of the children who'll be in his class. That's the plan anyway - I just hope it doesn't confuse him too much. He's not very routine-y and is fairly adaptable so fingers crossed...
Just about to start the statementing process and enrol on Early bird programme. Now we just have to sort out SALT! (The only thing that's not really working for us at the moment). I think we're very lucky with the level of provision we get here - great team of people working with DS2.

Jenk - I'll keep my fingers crossed for you. Have you found somewhere to stay when you go to BIBIC? Only a couple of weeks now - shame our paths won't quite cross!

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jenk1 · 01/02/2006 22:51

oh no, we,re not going now, last month the hospital admitted that dd did have CP and she is getting quite a lot of help now and she has also been referred to the top development paed so we,re very happy with her progress.

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sphil · 02/02/2006 17:19

Oh sorry Jenk - just assumed you were going to BIBIC with DS. Great news about support for DD though.

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shey · 02/02/2006 18:26

Our ds sounds a little similar. He was given an asd dx last May, when he was three. He was affectionate, had a great sense of humour etc. 8/9 months on, he has come on so far. It is very hard to just think of the next week rather than 20 yrs down the line, but it is such a good piece of advice!
Good luck!

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Davros · 02/02/2006 19:04

Sounds like you've got good support Sphil and everything has been well planned and thought through. This is your first port of call on Statementing!

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lars · 02/02/2006 19:23

Sphil, just wanted to say I know exactly how you feel. I also got my ds diagnosis this week ASD, at last we have the right diagnosis. We have waited a long time but I feel this is more accurate.

You feel upset but on the other hand glad that you have a diagnosis. larsxx

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mamadadawahwah · 02/02/2006 20:51

Sphil, so true about what you were told, "thinking for the moment", rather than 10 or 20 years on. My son was dx'd 6 months ago and in that time, he is a different person. I created a home therapy program for him and that has helped too. They are like all kids, they mature and grow. They are never static. when i was in your shoes i was in a flurry about what to do and what not to do, but i found the best thing for me, anyway, was to DO something. OUr little ones wont let us sit for too long.

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sphil · 02/02/2006 22:37

Ah yes statementing....I can feel a few threads coming on...

Shey - can I ask what you're doing about school for your son? As I said earlier,we're considering m/s but I'd be interested to know what other people think (and particularly as our DSs sound quite similar).

Davros - I read on the 'Special Schools' thread that you've known lots of ASD children who've done well in mainstream but that they've always had 1:1 support from someone they know well and who works with them at home. How does this work? I'd always assumed that if we get a statement which gives DS 1:1 the school would provide it, either from their existing staff or by advertising. This worries me, because how do you know how competent that person would be in dealing with a child with ASD? How did your friends go about getting familiar people to give the 1:1?

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sphil · 02/02/2006 22:40

Forgot to say - when we came back from the diagnosis meeting DS2 said 'hello' to me for the first time ever! Just thought it was wonderful confirmation of the advice about living for the moment - they constantly surprise you!

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shey · 03/02/2006 16:38

sphil, what a good question!
Knowing what schooling would be best for dx is proving to be a challenge.
We have had lots of advice and we think we hit on the perfect solution and then he changes and we want to re-think.
Both my husband and I are teachers in mainstream schools. Our initial reaction was that there was no way that any child with special needs can really be given the attention and programme that would bring out the best in their 'academic' education in a mainstream setting. We fought, with our statement, against the mainstream with support advice and persuaded them that they must write a specialist environment would be best. Then we had to think what specialist environment. DS had a speech and language delay diagnosis from one specialist, so we decided to focus on this. The speech therapists who run a communication nursery felt that a speech and language unit would provide the best environment. Reading Mumsnet, it seemed to be a great thing to do to get your DS into a speech and Language unit and then even if it was felt he had ASD tendencies he would be set up. No one ( and we have seen many people) felt that an autistic unit would be correct for DS. We are moving in the summer so we can't do much more at the moment. We have visited a language unit and liked it very much. However, that was three months ago, and Robin has changed again. I think he would really miss the class activities, being with lots of children his own age. It also seems that he does follow their lead and conform much of the time. In the nursery he is in, which is mainstream, the other children are great and he loves them. From an educational view point I don't know but from a social viewpoint, mainstream, in the right school, could be best. If we could handpick a full time support assistant, train him/her in speech and language etc that might be my favoured option.
In conclusion, it is all up in the air at the moment.
When does your ds start school? What area are you in?

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sphil · 04/02/2006 10:09

Shey - are you sure you're not me?!!!! We are both teachers too and our situation is spookily similar, except for one crucial thing, which I mentioned in an earlier post.Our local Language Unit doesn't take children with a confirmed ASD diagnosis. However, the head told me that they have plenty of children with autistic tendencies(!) We have been left thinking that we've cut down the choices for DS by getting him an early diagnosis - he really does only have autistic tendencies and we were told his diagnosis was quite complicated because he doesn't fit the 'classic' picture (whatever that is).

So, it sounds as if m/s is going to be the choice. Like you, no-one seems to think special school is right for DS at primary level. He is getting on well as m/s nursery with 1:1 and the school is well set up for SEN kids as well as having the right ethos. Like you, we change our opinions about what will be best for him as he changes - I'm not as upset as I was about the Language Unit because the primary can offer a much wider play based curriculum and it's such a great school.

I would LOVE to be able to handpick an assistant and hope Davros can answer my question about this. We live in East Sussex, by the way. And we've got a bit longer than you to make up our minds - DS doesn't start school until Sept 2007. We're just starting the statementing process (got first set of forms today) so any advice gratefully received...
Great to make contact with someone who has the same preoccupations!

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LizLocket · 04/02/2006 16:24

Hi Sphil

We got our diagnosis for our 4 yearold in November and I remember feeling the same way, relieved, even elated in an odd way but also sad that it was a 'forever' thing. We've just started Early Bird which has been great and have had a lot of help and input from the Early Years Service who have been amazing.

DS is starting school after Easter and will have additional support for 15 hours a week. They are hoping to use a TA who has worked with an autistic child in the past. If that's not possible the LEA will provide some education sessions on ASD and language problems. I know in the past the Autistic Outreach team and SALT have gone into the school and spent time with the TAs supporting the little girl with autism showing them ways of playing and interacting her. Our Early Yrs teacher is also going to spend time with the TA the first term DS starts ao hopefully it will be a seemless transfer but I'm still a bit worried!

Liz x

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Davros · 04/02/2006 16:45

Just sneaked on to MN for a minute while "tidying up" (and watching rugby)! The children I am talking about have all had home-based ABA programs that have worked m/s integration into the program.
EITHER
A tutor from home has been allowed to go into the school (by the school and LEA) and there has been a lot of planning and ongoing analysis with good cooperation between school/parents/ABA team inc supervisor (this is what Socci has just started doing but is using a private school and, I believe is self-funding for now)
OR
I have also known quite a number of children whose 1:1 has been chosen by the school. With enough cooperation, understanding and mutual respect this has also worked well. It would mean an LSA primarily working at school with Little X but also having some interaction with the home team, if not actually working at home too. Of course, if you have a home tutor or someone else you know you are happy with, then they are quite at liberty to apply for any job that the school may advertise and may well get the job.
Sounds easy eh?

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sphil · 04/02/2006 18:33

Thanks Liz and Davros. DS2s details have already been given to a woman (apparently fantastic) who works for the Outreach Service for ASD kids in m/s. Early Years have said that they can provide training for his 1:1 at the school nursery in Sept., so we're part of the way there. I just have this controlling urge that makes me want to choose his school 1:1. Thank God I've got another 18 months!

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Davros · 04/02/2006 19:00

Well you could keep your eyes out for someone who might be good or you might find someone working with him in the meantime who could do it and you could see if they'd apply. It is good to know that your child's 1:1 is someone you can communicate well with.

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shey · 04/02/2006 19:50

Hi Sphil,
Wow, I really did think I was unique, but no more!!
We have just completed the statementing process....fortunately with success. We have been given the top banding which means that if ds goes mainstream in Sept, (same school starting date!!!)he could have 1:1 support. We were e-mailing them on an almost daily basis and we liaised alot with IPSEA, and convinced them that specialist was appropriate. They said def not an autistic unit, so we focused on an assessment we had done by a private Ed Pysch who said Speech and Language unit. I think we bulldozed our borough but.... Our horrible problem is that we are moving in July, and that means we will have to go through quite a bit again. I can give lots of advice re statementing if you want to CAT me. I think mainstream with lots of support could be great for your ds. For the rest of this year our ds is going to a mainstream nursey with support for two mornings and three afternoons and a speech and language and communication group on three mornings. This set up is brilliant ...he loves it. If I can sort something out like this for next year that would be my ideal.
I'd love to hear from you.

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shey · 04/02/2006 19:53

I should add that our NHS report from Paed felt that DS was asd. The Ed Psych report was very good but inconclusive. (We understood that) We used our Private reports to gear towards the language unit option!

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sphil · 06/02/2006 17:34

Thanks Shey - not set up for CATing yet, but may well take you up on the offer! The initial staementing form looks deceptively simple (this is just the one requesting that DS be considered). Can't help thinking there are probably a few tricks...

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