Where do I go from here?

[padua]

Hi I wonder if anyone could offer me some advice. My DS has just been diagnosed with DCD (developmental coordination disorder) and was awaiting a SALT assessment which was hopefully going to highlight his social communication difficulties and possible ASD. The assessment happened yesterday and the speech therapist agreed that he had pragmatic difficulties but there wasn't problems in two areas which is crucial apparently for a diagnosis of ASD. I don't feel that the few tests she did gave her the opportunity to see his problems. He has more difficulties than an ASD child at my school who has a statement and yet without a diagnosis we can't get a statement or access any support agency to help with his social communication. The speech therapist said she'd put him on a waiting list and they'd eventually input into his IEP once a term. I'm not in any way saying I want my son diagnosed with something he perhaps doesn't have but who do I turn to for help now?

don't take SALT word for it - obviously their input on speech/communication is important but they can't diagnose - can you get back to see the paed who diagnosed the DCD to discuss your concerns about possible ASD. you can get a statement without a DX (though of course DX or no DX it can be very difficult to get statements). Speak to your local branch of NAS as well for advice about diagnosis, local quirks of service provision/procedures.

Hi Total Chaos, my second visit to the paed was a couple of weeks ago and it was a different person to the first one we saw. The first paed wanted to investigate high functioning autism. The second one subjected us to over an hour of going over the same stuff from the first meeting (which he could have gleaned if he'd bothered to read the case notes) and had entirely different opinions preferring to "wait and see" and placing the responsibility for recognition of communication difficulties on the speech therapist. He won't see us again until Feb. My authority are planning to scrap statements next year for any child receiving under 140 matrix units so I'm worried that we need to move swiftly on the paperwork to ensure some provision.

We have been asked to "wait and see" which seems to be a good thing in our sons case as time goes by the difficulties he has are becoming more obvious.
Our SLT said "a bit to early for a clear diagnosis" however she is going to ask school to treat him as if he has a severe social communication disorder.
We are waiting for an occupational therapist appointment and have been for quite some time.
The general thinking of he professionals is in agreement with ours and they want to help him with his individual needs.
They are communicating with the school and us well and hopefully we will know more early next year what the official verdict is.
You don't say how old your son is. I know the speech therapist works on things like feelings and emotions with the other AS children at school-would you be thinking about asking for an assessment from a private SLT?

My ds is 4 and has just started reception. He is having a lot of difficulties and the TA has to spend a lot of time supporting him. My concern with the waiting game is that next year there won't be much additional adult support in his class and school are already saying their sen financial resources are used up. I'm trying to avoid going down the private route if I can. I'm thinking I might get back in touch with the speech therapist and suggest she observes him in school as it may give a different picture to the 1:1 assessment she did.

My son is in reception and is 4 also so looks as if we are on the same journey. Ask for an ed psysch assessment and get advice from your parent partnership service.

I agree Tclanger I was being fobbed off. The IEP hasn't been written yet and I know it is because the senco says she has no resources to support his school action plus. She was stalling waiting for the OT to organise their block of support so that she could write them in as the action plus. Whilst their support contributes to the action plus the school should be able to put in some support too. As you say the school shouldn't have their sen budget all sewn up this early in the year without any contingency. Grr! feeling a rant coming on!!

Thanks for that I will give them a ring. We have been very fortunate with OT, referred in June, assessed and report back in Sept and block of support starting next week. Apparently this is because I agreed to the paed using my ds as a case study for his monthly staff meeting.

Just a thypught Padua - Quite often therapists come up against parents who are horrified at the thpought that their child might have ASD, so they might be reluctant to suggest it, or think they are helping you be pointing you in a different direction. So you might be better being blunt with a Paediatrician about what you think is going oin.

There seems to be a lot of pressure from schools for parents to get medical labels atm. Ive seen a lot of kids that seem perfectly normal to me, or variations thereof, and for some reason they are pushing for a diagnosis of DCD or ADHD when the poor kids are just doing what kids do!

I wonder how much of this is people genuinely thinking their is something wrong, and how much is teaching staff looking for a quick fix for a slightly "different" child?

is the OT going in to school to start the support or are you taking him to CDC or similar? ask the OT to provide two targets for IEP in any case and make sure all reports get to SENCo and class teacher.
it's not at all surprising that the SEN funding is already committed unfortunately. we had 10 unstatemented children arrive with significant additional needs out of an intake of 60... if nurseries and pre-schools got off their backsides and did some transition planning it would make yr r life a lot easier!
nevertheless, in my experience this usually means the school are more keen to attract additional funding from the LEA to provide support, so do make sure you speak with the head and SENCo and ask them what you need to do in order to make it easier for them to support your son. it is definitely easier to build a relationship with the school if you play nice for the first wee while. get stroppy after that if you are getting nowhere. (i mean really creepy, blush-makingly nice, treating them as though they are the all-knowing experts etc etc)
it is also easier in my experience if you can get the profs to refer to each other. ie use the OT to get more access to SLT etc.
really not school's fault if the funding they have been given is inadequate, you just need to work with them to find the best way to squeeze more money out of the LEA, and if school agree that is by you requesting statutory assessment then do it. they may feel it is better to wait (and that won't be because they can't be arsed) until they can provide more evidence of need, and therefore a better chance of the LEA not turning you down, or issuing a note in lieu etc.
don't believe the tosh about stopping statements either, if they are stopping them for kids under 140 it just means they will be putting more money in each school's budget to deal with under SA+, surely? the support should still be available.
it'll take a while - was he on SA+ at nursery?