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Ok, so saw Paediatrician again yest+now my brain is a bit fuzzled :/

(17 Posts)
osospecial Fri 16-Nov-12 14:37:54

Ill try keep this brief, DD is 3.2
Paed said, she doesn't think its asd as only has 2 out of 3 impairments (speech+social but not dependant on routine) but will put her provisionally on the waiting list for asd panel as its a 2year waiting list!? And in case when speech improves, social side doesn't etc iyswim. She will continue to see dd every 6months. Ok, I don't want her to jump into diagnosis, I'm not sure myself, but bit :/ at the 2year wait as it feels like another 2yrs of thinking 'is she or isn't she?'
What uspet me was actually the school part. I was thinking dd would start local primary in january with 1:1 like she currently has in playgroup but paed has said she is going to suggest when the education panel meet in dec that dd goes to an assesment/language unit until sep 2013 when she's 4, at which point she may be able to move to mainstream then. This has thrown me, I don't even know where the school will be or anything about this type of unit. The more I think about it I'm feeling more positive that this will help her speech more than going to the local primary with 1:1 but I still feel sad about it. Just trying to research it a bit now+find out what the options are now. Will I get to chose which one she goes to?

madwomanintheattic Fri 16-Nov-12 14:49:25

She starts primary at 3.4?

I think the paed is hoping that with specialist pre-school, she will be able to start yr r in ms with her peer group.

To be honest, if you have a school with a language unit, it makes sense to use it - we didn't have one, so dd2 started school with 1-1 support for communication.

You don't actually need a specific dx in this scenario - the fact that the paed recognizes she has sufficient needs to require a specialist placement confirms she does indeed have significant sn (at this stage) of whatever sort.

It's a bit like not needing an actual dx for receipt of dla - you just have to prove need. All a dx does is hang a label on a kid which makes it easier. But you have a list of paed recognized needs, so you don't require a dx.

Fwiw, dd2 waited two years for a dx of cerebral palsy. grin and that was with the brain injury and with a full set of therapists from birth, and high rate dla from 6 mos.

It drove me crazy at the time - but in hindsight it was the most sensible thing to do - she had extensive needs that were being met, they just didn't have an official title.

Especially with asd and communication, there are a number of possible dx, especially at this age where development is inno way complete.

There is likely to be only one unit near you, tbh. I would call the lea and ask to speak to the area inco that covers early years for your area. Explain that the paed will be writing to them to specify a language unit, and ask where the Lang unit is (tbh you could probably just look on the lea website). Then you can arrange a visit etc. ask for a transition meeting to be set up. This should be attended by both current nursery staff and 1-1, area inco, slt (and any other involved professionals who can make it) and obviously the new setting. Arrange for dd to visit, with her current 1-1 if possible, ahead of transition.

Waiting for a dx is a pita, but if she is getting the support she needs, (and she is) then they aren't doing it to deny access to services, they are doing it because they need more time to get an accurate clinical picture.

Good luck with the transition x

Ineedalife Fri 16-Nov-12 14:51:34

Sorry oso, I have no advice for you.

Yet another Paed who is happily sitting on the fence while families struggle on.

I am shock at the 2 yr waiting list.

I think I would be ringing for another appointment so that the Paed can clarify her recommendations about school, unless she makes it clear in the report.

Sorry you are having to go through thissad

Be kind to yourselfsmile

madwomanintheattic Fri 16-Nov-12 15:03:58

Ineed, they are hardly struggling on - or not without the support the child needs anyway. The paed has recommended and will organist a specialist unit with the LA. It's hardly saying 'oh, I dunno, come back in two years'. It's providing brilliant support whilst getting the child on the list for assessment at the point where two more years of specialist evidence can be used to support a definitive diagnosis.

Ineedalife Fri 16-Nov-12 15:07:23

it feels like another 2yrs of thinking 'is she or isn't she?'

I went through this with my dd3 and believe me it is a struggle, not knowing one way or the other whether your child has ASD. IMHO

chocjunkie Fri 16-Nov-12 15:13:20

sad - 2 year wait?

we had to wait 4-5 months for the ados and it drove me potty. reall feel for you.

I thing a speech&language/assessment unit might be quite good. as madwoman said, good idea to to arrange a visit the unit to see if this would be an option for your Dd.

regarding your Dd not being dependent on routine - well, this is not a diagnostic criteria for asd. Dd1 is severely autistic but not dependent on routine really. not saying your Dd has asd but this would not rule it out imo.

fanjoforthemammaries7850 Fri 16-Nov-12 15:18:22

My DD is also severely autistic and not routine dependent.

madwomanintheattic Fri 16-Nov-12 15:22:40

They could get a dx and still be thinking 'is she or isn't she'. And in the meantime they are getting full on support to meet needs.

Not having a dx isn't easy, but the dd isn't being refused access to services as a result. Loads of kids end up in their teens without a dx - it is a route to services for many, but in this case the services are not dx dependent.

madwomanintheattic Fri 16-Nov-12 15:23:26

Ds1 is nearly 11. We still don't 'know' whether he is asd. grin

TheLightPassenger Fri 16-Nov-12 15:51:30

the 2 year waiting list is shocking, but I agree with madwoman, that the language unit place sounds v positive indeed, as your DD is likely to get a lot more SALT and input from teachers with knowledge of SALT issues, in smaller classes than a typical MS nursery school. Am pretty sure you wouldn't have to send her to the language unit if you absolutely didn't want to. But you should consider it v seriously.

MummytoMog Fri 16-Nov-12 16:12:58

Your daughter is probably similar to mine, also 3.2 with a severe language delay and social 'differences'. She is not dependent on routine. I actually refused to have her assessed, because I really want to take a step back from the merrygoround of hell we've been on since SALT first raised the question of ASD. That being said, DD has been referred to the Early Years Assessment Team by an educational psychologist, and they will put support in place for her at her nursery. We are lucky that our nearest school has a unit for hearing impaired children, and so has extensive on site SALT and inclusion staff. The ed psych was happy to take a watch and wait approach with DD, and I really need a breather from assessments and is she isn't she and watching every single move she takes to see if it's 'ASD'.

Shall we get our DDs together for a play date? ;)

willowthecat Fri 16-Nov-12 16:19:21

An autism dx is not a magic gateway to better services or better schools and will not give you any more of a crystal ball about the future for your dd . We pursued the idea of an autism dx (rather than 'just' developmental delay) but I have mixed feelings about it now for all the above reasons. Also if she gets an autism dx, professionals may start telling you she is definitely routine dependent even if she is not.

marchduck Fri 16-Nov-12 16:41:10

Hi oso, I hope you are ok. I get exactly what you mean about not wanting to rush into a dx, but on the other hand the uncertainty is hard too...
One of my work colleagues has a DD who is attending an assessment /language unit for pre-school year, and she is really delighted with her progress. Hopefully you will be able to go for a visit to wherever the paed is suggesting so you can get a feel for it before you decide?
My DD is not dependant on routines at all either. Her main difficulties are also communication and interaction. I wish I was more knowledgeable, but I think the social imagination strand of the triad extends beyond routines, especially in girls. DD has had two MDT assessments so far and I have said both times that she's not bothered in the least by routine. She had the last one in May and the paed said then that she wanted to refer her to the autism assessment clinic. We have to take her next week for the main part of the assessment, so it will be interesting to see what they say.
All the best to your DD and you

osospecial Fri 16-Nov-12 16:53:46

Yes we live in Wales so they actually start school the term aft their 3rd birthday which is very young IMO, dd only just missed out on starting last sep by a few days! however this is optional and I don't think they have to start until 4.
I know what your saying madwoman, I am glad she is going to be getting the help she needs regardless of dx, from what I've heard on here a dx doesn't necessarily always mean extra help anyway. I agree with the paed that as time progresses and her speech improves we will see more clearly what the other issues are and if they improve. I have been trying the last year to not think about 'is it asd or not' and just try concentrating on helping her with what I do know is wrong-the speech+communication but it is hard and now the thought of another 2years with that niggling question.
It did upset me to hear she would have to go to this assessment unit at first, it's hard to hear that your dd has special needs from a professional even when you have known that for ages really. I still had pictured her starting school in the local primary. I can see now though that this is the help I've wanted for her, more intense speech therapy really, now while she is still young.
Ineedalife - thanx, it is shocking isn't it, 2 years! And it is hard not knowing, even though you want them to get the dx right it does drive you potty not knowing!
Choc junkie+fanjo-I know what you mean regarding routine, and I personally think dd does have some elements of routine in her play if that makes sense, she likes to take things out of pots put them back in again, one by one, like pegs, marbles etc but she doesn't have major tantrums at changes to her routine at all. At the first appointment she said she didn't think asd as dd didn't regress much as a toddler but wants to keep an eye on her but from what I've heard on here, lots don't necessarily. Either way I'm glad she put her on that waiting list as I need a proper assesment before I'm convinced either way and paed only met dd twice for 1/2 hour and just spent most of time talking to us, she hasn't spoken to salt or anyone else involved in dd care either,so it still leaves me unsure.
Thelightpassanger-I am starting to see it as a positive, it was just a shock I guess, I wanted to increase her speech therapy next year anyway, and I really want her to get as much help now while she is young.
I actually spoke to my cousin just now who works for a charity and knows a bit about schools in area and sen and she has told me about a primary that's in the next town that has an assesment unit attached and is supposed to be very good, she has a friend that used to work there and is going to email me the details so I can look into it so that's great.

osospecial Fri 16-Nov-12 16:57:29

Oh thanks for the replies mummytomog(great idea about play date;), marchduck and willow the cat, it really helps talking things through on here.
I am having a rare night out at the cinema with friends tonight and wasn't feeling much like going but I'm feeling so much better now smile

madwomanintheattic Fri 16-Nov-12 17:34:10

Have a lovely time x

Looking after yourself is just as important as looking out for dd x

MummytoMog Fri 16-Nov-12 20:12:19

Mogling didn't regress at all, but she definitely stopped progressing at eighteen months. This was when her brother was born, so we didn't notice too much and just assumed she was feeling a bit confused and not wanting to grow up. She then started to power ahead again about six months ago and compared to where she was then, she's talking so much more.

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