multi-disciplinary assessment tomorrow morning

[notfromaroundhere]

There's no real point to this so I'm not entirely sure why I am posting!

We've got DS1's assessment tomorrow, I'm not really sure if a dx will be made or not.

Unfortunately DP will have to stay at home with DS2 as our baby-sitter has come down with the 'flu which has put my anxiety levels through the roof. This is partly because I will have to drive there and parking in busy towns is not my forte!

Apparently it will last around 2-2.5 hrs and there will be a Paediatrician, Occupational Therapist, SALT and Physiotherapist involved in the assessments including an ADOS test.

DS1 has had a massive speech explosion since I first became concerned and sought a referral and generally I feel o.k about his developement until I see him with his peers and then I think hmmmm maybe my concerns weren't unfounded after all.

I just needed to waffle some stuff out no need for a reply!

Hope it goes ok.
I'm a salt and i know it can be stressful.
It's worth writing down stuff you want to discuss/ask about before you go as it can be an overwhelming experience and you might not have a chance to say all you want to.

Thank you. Do you think they will mind me making my own notes as I go? I have really struggled to retain information when I've met with the SALT and Paediatrician previously

Hope it goes well. I should think they'll be fine about you making notes.

Gosh, not at all!!
It's your right to do so!
I would be delighted if somoene did this.Shows they want to be an active part in child's programme.

Good idea to get a calm friend to do it.It's a lot fro yuo to cope with on top of talking to them making your child comfortable and being relaxed yourself.

You can (in future-bit late now) ask somoeone from your local Special Needs Advisory Project SNAP) to come with you.Ask about details tomoorw-all authorities have one.

Good luck

Hope all goes smoothly.

Thanks for all your good wishes. Well we came away with a dx of Autism Spectrum Disorder. Even though it was me who sought the referral as ASD was my concern I burst into tears when given the formal dx. I'm still a bit shaky now, I have loads of information and they are going to ring me at the end of the week to talk through it all again.
Various people will be notified and stuff set up for DS1 so we're not being left high and dry with the dx. The whole thing was dealt with professionally and with a great deal of care so I count myself lucky. It still sucks alot atm.

At least you have an answer - it's not easy but try to think of the positives for now. You mentioned his speech has come on - and that's even before you get any extra help.

big hugs to you notfromroundhere, I think it is impossible to prepare yourself for how you feel about a dx.

I am slowly coming to terms with my ds not being like his peers, being at nursery outing with him really brings that home, though he is generally a lovely child. I still struggle with him getting a dx - not that we have been offered one, he has been under multi disciplinary team for over a year now, I think.

I think its always hard to get a formal dx even when its something you've fought hard to get. I had 'known' for about 2 years that ds was on the autistic spectrum befor he finally got his dx of AS in august but I still felt sad.

It'll take time for you to get used to it so be kind to yourself {{{hugs}}}

Thanks for all your messages, I'm feeling much better and can see the postives of what I was told that passed me by at the time.

His preschool has been fab so far so hopefully that will continue, I think the SALT said arrangements would be made for a specialist teacher to go into the preschool and come up with a plan (my input included) and give the preschool advice in general. He also has a 6 week place in the development nursery (not sure if he will settle there though tbh). He's 3.2 atm and won't be starting school til September 2010 so it gives us more time to see how things unfold.

I could go on and on about it all but I'll stop myself before it gets too boring!

Thanks again its really helped to offload all this

Notfrom, go on about it as long as you want to.That's what this part of MN is ofr.

Must have been a very emotionally fraught day for you.Remember, he is your boy and nothing changes that. The diagnosis is a tiny tiny tiny part of who he is and is often helpful in accessing help.

Keep posting. You're on a journey with plenty of others.You need never be alone.

XXX

notfrom, please do go on about it!! I'm sorry you've had such a stressful day, you must feel a little shellshocked this evening.
It would really help me if you told us about it as I think we'll have similar in Jan. Same with my ds of 3.4 - his language has also really come on but something just isn't right with his development and he definitely stands out (if only mildly) from his peers.

Do you mind me asking what behaviours or qualities they noted in your ds which led to an actual dx? I don't think I'm allowed to be present at our assessment so it would really help me to know what they look for in more borderline cases.

And best of luck for the future. It sounds like your ds is making great progress, and any additional help should really benefit him.

Moondog thanks the SALT present today said the dx was the key to understanding him so we can help him understand the world around him or something like that.

Kettlechip - the Paed did say when giving the dx that a few years ago they wouldn't have been able to dx DS1 at the age he is now as it is all very subtle but ultimately the tests and other information revealed that he had the triad of impairments. The preschool report stated he was shy, often moved away from children if they joined him and would seek out adults. as an NB they did say on the day of doing the report he had sat and played with another boy with cars on a car garage. I have seen him approach other children but he needs them to take the lead as he doesn't seem to know how to get them to play with him.

I haven't got the full report (they are sending it) but I will do my best to explain although this may come out in a rather blurting fashion!

It's really things that should be innate but DS1 has had to learn to do - like eye contact - that's improved vastly but it still not quite how it should be. Its very subtle but sometimes its too little or even too much (he sometimes grips my face and stares right into my eyes to the point I find it painful but not in a physical way if that makes sense????).

Wanting something but not being able to ask for it - a toy too far away and he was wiggling his fingers and staring at it but couldn't ask for it (he has the vocab and can & does ask me for stuff)

Enjoying the company of others but not trying to engage them further

I did ask where the line was between shy and social communication difficulties; the SALT said something along the lines of shy was when we came in the room and he hid behind me, difficulties were when he was happy and settled playing with them but unable to ask for what he wanted even though he was bursting at the seams for it

His vocab is of no concern to them now (it was around 2) but they way he forms sentances is repetitive; again its like he has learnt the formula of what word roughly goes where. The SALT did specifically comment on when they were blowing up a balloon and letting it go and waiting for DS1's reaction and he piped up with "are you going to do it again then" I thought this was good but she felt he had learnt this from an adult as its not at his general conversation level.

Conversations - hard work - struggles with the back and forthness

2/3 part instructions - He will only carry out 1 of a 2 part and 2 of a 3 part.

I was in the room for the assessment but the Paed was asking me a lot of questions so I wasn't always aware of what was happening.

Since the language explosion DS1 has started to toe-walk and flap his hands which he definitely wasn't doing 6 months ago. He has always played with toys at eye level (normally on a work-top). Apparently this is a visual sensory thing

The SALT commented that he has a lovely smile (and he really does but his other facial expressions were not in the range expected. I didn't persue this one further and just accepted it as it was as by then I was a blubbing mess.

Not sure if that's any help when I get the proper report I'll update you further if you want

thanks for taking the time to write all that down - it's very interesting for me as my ds sounds very similar.

what an emotional day you've had. it's great to hear that his preschool is so good - he should be getting a good start from that.

It's been very therpeutic to right it down RaggedRobbin.

Another main point I missed was answering questions; he doesn't consistantly get them right for things he does know e.g. what colour is that (point at a blue star) he might say star. He is getting better and a few months ago he would just outright blank questions but the lack of consistancy in answering was a pointer of a social communication difficulty.

write it down not right it down

They have to focus on the negatives (very much so) to explain why he got the DX but it's great that he can say such a long sentence in context (about the balloon) and that he can answer questions. Definitely a lot that a good speech therapy program can work on.

i'd be really interested to know about your ds's imaginative play. our salt has said recently that she is more inclined to think he has an SLI rather than autism because he has been developing some good imaginative and symbolic play. he does sound very like your ds though in terms of communication. what is your ds's imaginative play like? sorry to be nosey!

What is symbolic play and SLI? Soory, I am very new to all the official terms. He does have imaginitive play but I think it is pretty basic and I suspect he doesn't expand on it to the standard expected. He will pretend to be a dog/cat/monkey etc but the role playing is pretty limited to a set story. He will sit and play tea parties and pretend to cook food and serve it and he will pick up an object and pretend its something else. Put teddies to bed etc. When he plays with his cars and trains he does act out stories but again it is limited and some of it (not all) is from Thomas DVD;s etc. He tolerates people trying to change the play to a point but will then walk off/have a tantrum.

Another good e.g. of lacking what should be innate is he didn't learn to hold a cup til he was 11 months and DP had to teach him hand over hand. DS2 just instictively grabbed one at the 5 month mark.

Thankyou so much for writing this down, it's really helped me, like Ragged Robin I can definitely see some similarities in my ds - who also only has subtle signs of ASD - responding to parts of 2 and 3 part instructions is a big one. We are also at the same level of imaginative play too, I'd begun to think that may rule out ASD but obviously not.

ds is able to ask for what he wants but it's a fairly recent development. At 3.4 he's barely constructing sentences, let alone coming out with the phrase your ds did about the balloon - I'd be thrilled to hear that from him! I could ask him the same question about a coloured star and get the right answer 50% of the time, the rest of the time he'd say star. Eye contact went through a really iffy period but is pretty much normal now.

I'd love to hear more as you remember bits or receive the report. I suspect there are lots of us in similar situations out there and I really appreciate you sharing your experiences with us.

• i bandy these terms around as though i've been using them all my life, but really only picked them up from here!

SLI - specific language impairment
symbolic play - i think this is where, as you describe, your ds will pick up an object and pretend it is something else.

you could be writing about my ds, the description is so similar. our SALT is not an autism specialist, so i'm going to be wary of accepting her hypotheses as a dx - which i'm sure she is not intending them to be.

Cyber - you're right there is a lot to be positive about and the team told me there are plenty of things they can do and show me to help with the difficulties he does have.

Kettlechip and RaggedRobin - I am probably focusing on the things I had been concerned about and they may not be the main points of concern from the professional so try not to read to much into what I'm saying. I know the SALT was of the opinion that his sing-songy voice was a feature of the ASD whereas I had always felt that he had picked that up from me as I have an odd accent. His score on the ADOS test put him into the Spectrum and combined with their observations, other background information and preschool reports they were confident in the diagnosis.

Something else that was said was that DS1 assumes I know what he knows