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multi-disciplinary assessment tomorrow morning

39 replies

notfromaroundhere · 14/12/2008 22:20

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!

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kettlechip · 16/12/2008 20:12

Thanks again, notfrom, we've actually just come back from a SALT appointment this afternoon, our SALT is an expert in ASD (job title Highly Specialist Speech and Language Therapist) which always makes me smile, anyone who could say that probably doesn't need to be in SALT.. anyway she is thinking probable SLI at the moment for ds but thinks his mild autistic traits (limited social interaction, although a sociable child etc) can be explained by his language impairment.

It's so tough to call, I think there is a lot of overlap between the conditions, it's taken 18 months of observation and nobody feels ready to diagnose so we'll need to wait and see a bit longer I think. You've given me loads to think about. I don't think ds assumes I know what he knows as he's constantly showing and telling me things at the moment.

notfromaroundhere · 16/12/2008 21:49

Its good you're getting to see the experts Kettle. I'd not heard of SLI before today and reading google it does sound familiar but I suppose with my DS1 there is all the other stuff too which led to the ASD dx. Certainly the sensory things like hand flapping, very rough play and toe-walking have increased or appeared since his language explosion.

It was just over a year from DS1's first SALT asssessment to the multi-disciplinary with big gaps of waiting and seeing in between. The dx is feeling more real now that I've discussed it with my MIL and I only had a mini 2 second weep so I seem to be making progress too

I'm going to try and discuss the DS1 assumption that I know what he knows with the SALT again as it doesn't ring true to me tbh but I may have missed the rest of what she said as my notes sort of die off mid-sentance!

Anyway I hope you get all the support you need for your DS, DX or not and that things keep moving in the right direction.

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RaggedRobin · 17/12/2008 09:50

yes, it's the sensory stuff that make me wonder about my own ds; he licks the radiators and chews all his clothes at the cuffs constantly. we had a really quiet day for a change yesterday and, while i thought he had stopped lying close into his toys to play, he was doing a lot of it again. he was repeating a lot (new fireman sam phrases) even though his own spontaneous language is improving. They sound like such silly little details, my mum thinks i'm daft for noticing them.

Aefondkiss · 17/12/2008 11:10

notfromroundhere, if no one has suggested it yet, it might be worth applying for dla (apologies if you have already), my ds was awarded middle rate without a dx this year.

notfromaroundhere · 17/12/2008 13:29

Ragged - at times it felt like I was nit-picking DS1's speech and behaviour. Toddlers by their very nature can be quirky and don't all follow an even development path so I think its incredibly hard to differentiate between a quirky toddler and one who has a disorder. Which is where the experts come in suppose! I've had the SALT interventional plan through today and the aim is "to develop "DS1's" communication and interaction skills to his full potential". Which is exactly what I want. Although I am that they sent the report to his old preschool with whom I had a massive falling out and is based on the primary school site that DS1 will likely attend. (He has been at the new one since Sept and visited him there a couple of weeks ago). I just hope the old preschool decide to send it back and not gossip about it as I am not ready for the hushed village whispers yet.

Aefondkiss thanks for that - it hadn't occured to me that we may be entitled to DLA. I've been given leaflets of organisations to contact for support so I will try and do that and discuss the DLA process with them.

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notfromaroundhere · 04/02/2009 16:45

I now have the full assessment report so I thought I'd update this as Kettlechip and Ragged were interested to hear more (I think!).

For some reason they have stated DS1 lashes out at other children when he is frustrated. I have no idea where they go this from. He does occasionally push DS2 but no more so than any of NT peers and preschool have said that he has never lashed out at a child there. (in fact he goes up and cuddles other children but they don't always take so kindly to this yet he doesn't retaliate at all). So I will be writing to get that corrected.

Anyway on to the test bits of the report. They did the ADOS but haven't included his scores so I will be writing to find out as I think we're going to look at private options.

On his language and communication:

he appears to have quite a lot of language but closer assessment suggests that the phrases are quite similar and learnt, rather than being created specifically for the situation. e.g. when the tharpist blew up a balloon and let it go DS1 said "the wind blew it faster and faster" which is from a book.

He has a distinctive intonation pattern that seems to relate more to the context in which he had learn the phrases than the situation he was in e.g. when he commented on the position of the balls he had thrown he said "they're behind me" pantomime style.

He pointed to objects to share interest e.g. he pointed under the bed and said "what's that under there"? He nodded and shook his head and gestured "big" with his hands but they felt he used less gestures than expected of a child his age.

He is progressing with his language development but still seems to find it difficult to use this language to communicate effectively for a range of purposes.

Social Interaction:
His eye contact was variable, he did make it appropriately but often had a blank stare or gaze was not directed at the therapists eyes. He used very little facial expression even when he appeared animated by an activity.
He did respond to bids of joint shared attention and also laughed and smiled when he enjoyed some of the games and remained engaged and requested more.

The said he was a little boy happy to engage but often found it difficult to initiate interaction appropriate to the situation. e.g. one therapist had the bubble liquid and the other had the blower and he made it obvious he wanted the therapist to pass the liquid over as he kept looking between them but wasn't able to verbally ask to make his desire known.

Play:
He happily joined in the pretend birthday scenario but on occasions he did not respond to the therapist's agenda and kept to his own. He showed some simple pretend play with some small dolls and furniture, using a miniature bottle to pretend to pour into the toy jug and petrol into the fire engine. He accepted being played alongside but did not respond to suggestions to extend the play e.e.g it was suggested the characters play football but he just continued to put the characters in a jug. He seemed to struggle with problem sloving tasks, being unable to place puzzle pieces on a shape board and appeared to want to place them as if onto an inset board.

He enjoyed looking at a story book and engaged with the therapist's questions with simple comments describing the pictures. However he did not appear to follow the underlying theme of the story.

From my POV DS1 is doing really well; he's made a proper little friend at preschool that he plays with rather than alongside. At softplay, play-dates etc as long as either a parent or the other child initiates the play DS1 plays really well with other children. He's language has come on loads again and he has gone from being a bit muddled on who/where/what etc to having it nailed and asks lots of appropriate questions now. We aren't getting the support we were promised but that's another issue I am tackling....

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kettlechip · 05/02/2009 21:22

thanks so much for this update notfrom, funnily enough I was just about to search for your posts, as you mentioned in the S&L thread that your ds and my ds had exactly the same stall in development and I wanted to read more about him. There are lots of similarities (and it's all really subtle too) other than the sensory side of things, we don't have flapping, toe walking etc. He does look at things at eye level 2 or 3 times a day though, so am noting that.

I do have a nagging feeling that ds1 will eventually prove to be somewhere on the spectrum, although I think it will be at the milder end and we're still weighing up whether he should be dxed or not. His language and social interaction is definitely atypical. Ds2 is just coming up to 18 months so I am really holding my breath that we don't have the same with him. His development has been very different so far so am crossing fingers that he'll keep going.. Do you notice big differences between your ds'?

notfromaroundhere · 05/02/2009 21:52

Hi Kettlechip

Today I am wondering why we went down the dx route as I am banging my head on a brick wall as far as getting any help is concerned so you're doing the right thing imo to wait and see if you actually need it. Although perhaps having a dx will eventually smash down our wall but its too soon to say.

I know the breath holding well! DS2 (19 months) is a complete polar opposite to DS1 in a social sense, he actively seeks out attention from strangers and his speech, shared attention, understanding, following instructions etc is all more advanced than DS1 was at 19 months but I have some nagging doubts creeping in. He loves adult company but does shy away from other children he doesn't know, he will take my hand and drag me but then point and verbally ask for what he wants ...I think its a case of a little knowledge is dangerous and not wanting to be fooled again that is making me more anxious. If he was my first or DS1 wasn't on the spectrum I don't think I would be concerned IYKWIM. DP thinks I'm quite mad and he could well be right!

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kettlechip · 06/02/2009 14:09

Sorry the dx isn't helping yet, hopefully some sort of support will kick in for you soon..

Exactly the same with ds2 (17.5 months) language far more advanced than ds1 at same age. He pointed out of the bath last night and said "Mummy, I want the sticker" which I'd probably be thrilled if ds1 came out with even now! It's difficult not to read too much into everything they do, ds2 was spinning the wheels on an upturned scooter today, and I had to remind myself that a few seconds of spinning didn't automatically signal ASD.. DH also thinks I'm mad, but like you, if I didn't have ds1 I'd never be looking for it in ds2..

notfromaroundhere · 10/02/2009 13:14

Wow your DS2 sounds very advanced in his speech. My DS2 is at the "wan dat" "moore" waving cup of juice , naming things stage. He completely freaked me other the other week when I'd gone to make a drink and he was playing with a big tub of megablocks. I walked back in and he'd made a huge tower with only blue bricks (there were stacks of other colours). He's not done it again and I too have to remind myself that one thing doesn't equal ASD. Although his tantrums are concerning me a bit atm, he has quite a temper on him for one so small!

I've had a minor breakthrough, after a 25 minute phonecall I have finally got an appointment with the SALT to discuss the report findings and (hopefully!) give me some ideas on how to tackle his greater language issues. She still wants to do yet another assessment on him though

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TotalChaos · 10/02/2009 17:20

oh yes the "yet another assessment" sounds awfully familiar. sorry that the support etc is coming slowly. after DS's paed appointment it took a couple of months for them to sort out the speech therapy, the wheels of the system can grind awful slow even when they do intend to keep their promises to some extent! might be worth you contacting local NAS as they often do courses for parents of kids with ASD helping with issues around communication/behaviour etc.

notfromaroundhere · 10/02/2009 17:41

I know assessments have to be done, but he was assessed in November at Preschool and had the big ADOS assessment in December so it just feels like overkill. The type of assessment she will do doesn't get into how he uses language at all which is the biggest issue highlighted in the ADOS report.

I was really keen on doing the Earlybird course but they don't do that in our area. So we are starting on our areas course tomorrow but they don't get into the specifics of your child, just an ASD overview. The SALT was saying it would give me better understanding of why he does things but when I asked if it would tell me how I could minipulate that so he learns more effectively the answer was probably not.

Its just so frustrating, he's at a really good learning point atm but I'm just a mum and I know he learns language in chunks and uses it in an atypical way but I don't know what I can do. I've drawn a blank on private SALT as the only one in my area only really wants to see him at her clinic which just won't be doable for me as DS2 is very unruly spirited. The NHS SALT was actually ducking my calls but I inadvertantly caught the receptionist out so I am feeling very disillusioned today. I do know that his problems are relatively mild and I am moaning about nothing really but its the feeling of not being able to do anything that is getting me down.

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TotalChaos · 10/02/2009 17:49

oh that's a shame that you don't have the back up option of private SALT. may also be worth asking if SALT department run Hanen courses (very good courses for parents of kids with language delay, there's one for general delay, and another for ASD). It's not moaning about nothing - your child has a need (for help with language) and you want it met.

notfromaroundhere · 10/02/2009 18:26

Yes I've already asked about Hanen and that's a no too. "its too prescriptive" and they believe in "tailoring programmes to the child's specific needs". Which has happened for DS1 . I can't find any privately run courses either. Now my friend has just messaged me to tell me DS1's keyworker who DS1 really likes is leaving his preschool as of Thursday this week. Argh.

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