Result of ds's assessment

[Eulalia]

We got back yesterday after a tiring but enjoyable week. Feeling more optimistic - we haven't had a copy of the final report yet but the SALT's individual report seemed to sum him up correctly as having a semantic pragmatic language disorder and mild autistic spectrum disorder.

I know he has been showing less autistic behaviour recently and this is encouraging. However he still shows enough within the 3 main areas for the diagnosis to be made.. He is becoming more sociable though and showed concern about one of the other children in the unit. It was funny as he says "shut up, thank you" quite a lot which the staff found hilarious as on the one hand this is rude but adding on the "thank you" shows politeness. His comphrension and expression of language is around age 2.5 with some gaps. The SALT is trying to push him further along the waiting list (he is currently nearly half way through a 42 week list). He should get the SALT in blocks and won't need special assistance at nursery. They are so good with him there anyway. I also got a big, big boost to my confidence when several people said quite independently that I was doing a great job not just with coping with everything but was adapting my behaviour to help with his development.

The unit was great. He was assigned to a nurse who I thought was just looking after him but she was actually observing him all the time and doing a checklist of his abilities. He was in a nursery type setting and loved the toys and equipment, as did dd who could sit in some of the time. I saw the staff either on my own or sometimes with him and they also observed him on their own. We stayed in the little apartment in the grounds which was lovely and peaceful so there was something of a holiday atmosphere. It was great to get out of the home environment and to concentrate fully on him. There was a case conference at the end with 10 people (!) and it was very comphrensive. I can't fault any of them. His nursery teacher even came to give a report which was very helpful.

Oh and he peddled a tricycle for the first time there!! They say his skills at using scissors, threading, colouring in, numbers and recognising shapes are very good. He does NOT want to draw though and this may hold him back with learning to write eventually.

Anyway sorry this is so long, just to say thanks to you all for the support and encouragement since ds's initial diagnoisis and indeed before. Feeling quite optimistic about the future at the moment

Had to share this one ? I was telling a friend about ds?s assessment and she was being OK making the usual sympathetic remarks ... she?s actually a good friend but prone to worry and I know she?d have a fit if there was anything even remotely ?wrong? with her children. Anyway we finished the conversation and she said ?honestly he will be fine and I feel that if they?d put my child into that assessment they would have found something wrong with him? . I just didn?t know what to say to this... I know she was only trying to be kind and make me feel better but I don?t Need anyone to make me feel better. In fact all it did was to trivialise the whole process to the level where there is nothing much more wrong with ds than any other child.... arghh!!!!

Anyway got the final report in yesterday so feeling a bit in limbo waiting for his SALT and referral to orthotics (he has Familial Joint Hypermobility). In the meantime I?ve been working at his speech which is hard at times as he can be quite rigid. A bit of a breakthrough last night when I was trying to get him to go to the loo at bedtime. I often go myself to encourage him to go... anyway he ran off without going himself and we repeated the process some 10 mins later with me saying ?I?ll go to the toilet? He said ?no no, mummy have toilet?, then lots of looking at the loo and thinking hard ... I didn?t say anything just let him work it out... and he said ?no mummy had toilet?. Well I was amazed as he not only remembered that I?d already been to the toilet and realised that it was his turn (!) but he wanted to tell me and able to correct himself and use the right tense! ... ( albeit still a bit clumsy)... quite a lot of achievements just in this simple process

People really annoy me when they TRY TO HELP us by saying these things- in my case it is very reare that anyone visits us- nor has all 3 boys at the same time- therefore they have no idea of what difficulties any of them have- should they 'brave it' and have look after all 3 through a course of at least 1 day- from waking to bedtime then i'm confident that they would not be able to say that 'boys will be boys' or in your case that 'their son would have got the same result at the assessment'- ELALIA--- think of ALL the ways EVERY day that you have to HELP your child- from the moment they wake up till they are fully asleep- think of what instructions you'd have to give someone if they were to look after your child...and go 1 step further what about if they had to take the child shopping/swimming etc... what would you feel they had to do to make the trip a good experience for your child... i found writing out a 'Our Family- A Typical Day' to send to the DLA peolple very 'reassuring' to me that the 'difficulties' are REAL...I literaly listed a minute by minute time plan of a typical school day and a weekend day- including every possible eventuality that could happen. After doing this i realised how much I do (i'm not being bigheaded ) and how 'different' my life is to that off people like 'your friend' who just have NO IDEA!!

Hope this helps!

Ofcourse...the reason her son may 'get the same assessment result'... could be that he has 'developement issues' too and she cant see it/or won't admit it.

Now if thats the case...who's the lucky child - the one where the parent is doing all she can- or the one where the parent things' all kids do this'

XX XX

Welcome to the hypermobility club Eulalia, me and lou are the resident experts! What will he be having done at the orthotics, do you know? My dd has to have piedros or a stiff boot like startrite boots and heels cups. The heel cups are made after making a cast of her foot - they are great though and stop her feet moving all over the place. I have started to notice a difference in her feet when she is walking barefoot now, which is great! Hope everything goes okay at the orthotic clininc - ours is usually a nightmare wait

Sorry about your friends comment btw but we all come accross coments like this I'm sure

Thanks fio2 - yes he is having heel cups and possibly some sort of boots/splints if the cups don't work. I am a bit annoyed about this as he was seen 2 years ago and they said he would grow out of it .. and the possibility of hypermobility/connective tissue disorder was initially picked up at birth and not followed up. Anyway it hasn't affected his walking so no big issues there.... how is your dd - how long has she been wearning the boots?

mrs forgetful - thanks for the kind words. Yes I have started a diary and have the DLA forms to complete before end Nov. My friend's boy is OK although very boisterous and a bit aggressive I feel but probably quite 'normal'. I was seeing another friend yestser day with a 4 year old girl and eveyrthing was going so fine till they went up to her room and I heard some door slamming, shouting then crying. The girl came down and said that ds had hit her.. I asked him if he had hit her and he said "yes, I'm hitting [name]" (as we all know autistic kids can't lie). Asked him why but of course he was totally stumped by the question. It kind of scared me the offhand way he said it, so uncaring... I worry about him getting older and bigger and keeping an eye on him - how much I should be visiting friends etc etc...

Anyway firstly is to keep the visits to 2 hours as I notice that he gets excitable after awhile and then trouble happens.

Has your health visitor come yet mrs forgetful?

Good about the speech eulalia! Excellent. And friend sounds grrrr. Try and ignore. i think with the hitting stuff you really have to play each freindship by ear iyswim. Most children can deal with the occasional hit (and are happy to do it themselevs) Not all parents can though. Supervise as much as you feel necessary, but if things are getting too stressful then let those particualr people go I guess.

Remember he's not unemotional- at the moment he just hasn't learned how to negotiate to get what he wants. It'll come. Socially he's still a toddler so he will behave like a toddler sometimes iyswim.

And grrr about the hypermobility!

Thaks for reminding me jimjams - yes you are right he is emotionally around 2.5 - they even said so at the assessment only a few weeks ago... funny how you forget though, particularly when he is talking so much better and appears 'normal'. I think I am kind of going through another coming to terms with the diagnosis and I really need to get some sort of plan sorted out for firstly dealing with remakrs that my friend made. I wasn't annoyed with her just didn't know what to say... then working out how we are going to do a visit, such as supervision, how long to stay there and so on. Kind of kills the spontaniety but better that than waiting till problems arise. I don't think I can lose these friends (I'd have none left!) but educate them. Its diffcicult as I live in the country and there are no support groups nearby so I can't stick with like people.

Anyway finding ds quite hard at this stage as he is constnatly asking for things, bossing me about, telling people to shut up and doing things like spilling his rice on the floor and saying "need to get the hoovering"

sorry for my ramblings... it does help ....

Eulalia, my dd has had the boots since she was about 22months but has only only just had the heel cups after lots of nagging from me They have made a big difference to her balance, but be warned they do rub their feet to begin with We didnt have the hypermobility diagnosed for ages either, they wouldnt even refer her to the orthopod's but their was so obviously a problem. She actually broke her leg through over extending, which I think is quite common (isnt it lou?) and I asked, well begged, to see the orthopaedic surgeon. It was diagnosed straight away. Makes you mad that you have to wait so long for blumin treatment!

Don't mean to hijack but I was wondering if anyone had any tips about ds1's CDC assessment in a few weeks. Busy preparing his 'Early History' and it's pretty depressing. ds1 is 3 & possibly autistic.

child development centre

fio2 - god makes a whole new meaning to the term 'break a leg'!!! Glad things are working out for you. how old is your dd now?

coppertop - my ds had appointment at the CDU in May - anything in particular you need to know - the procedure, questions they will ask? Sounds like you are well prepared already.

I know I?ve spoken about this before but I need to rant ...

Why oh why do my parents have to be so pigheaded and not get it into their heads that smacking ds is NOT the right thing to do. Was at a family party yesterday at their house and towards the end ds was getting a bit hyper (I know I should have left earlier but stupidly got caught up making cups of tea)... anyway he was banging doors and running around... nothing exactly awful, and I was just off to get him and I saw my mum leaning across to my dad and one of my sisters and heard her saying ?I would just smack him? I just said loudly ?I?ve told you before it doesn?t work!!? and she starting going on about her bloody china cabinet again ?well it worked that time? I just said that was a co-incidence and wanted to say more but as other family were there didn?t think it was the time or place.... This is not the first time that this issue has arisen but I am appalled that my mum and dad just haven?t changed their views despite the recent confirmation of his diagnosis. Just recently ds was doing something deviant ? forget what but my mum said, ?I don?t care if he is autistic ? I don?t want him doing that? Then my dad said on another occasion (again sneakly to mum) but I overheard ?it would be cruel not to smack? cruel not to - don?t they realise that he is emotionally practically a baby ? can?t they see that for themselves? I hate the way they discuss it when I am there in low voices ? that is so cowardly... Sorry feeling very down about this. I was supposed to be leaving him with them on Monday mornings so I could take dd to mums and toddlers alone but had to take them both this morning as I don?t want to leave him there alone in case they are hitting him...

Feeling rather emotional and hormonal (period started yesterday ? first one in 2years, 4 months and it is a biggie) and just feel that my mum and dad aren?t helping, just adding to my burdens by giving me extra stress worrying about how he is behaving at their house. They don?t get off their arses and deal with the situation ? but I know its hard, they are in their 70s and I just feel that they are thinking ?I should have that child under control? ? at the moment I just don?t feel like seeing them anymore ...

Anyone else been in the same situation ? is there any point in trying to educate them? Thanks (sniff)

Eulalia & dinosaur - I'm sorry you're both having a bad time of it. I wish there was something I could say or do to make you feel better. I was just going to ask what kinds of questions the CDC ask, so that we can be prepared. However, I think the last thing you need is to be answering other people's questions! I hope tomorrow is a better day for you both.

Eulalia and dinosaur sorry you are both feeling so down. I think the reason people don't understand is because children with development problems often look 'normal' so people assume they are. I was just looking at some holiday photos with my mum and we came to one of dd sitting there smiling and my mum said ' I can't see there is anything wrong with her!' when really it is quite obvious when you compare her to her peers. She will be 4 next month btw.

Coppertop sorry I can't answer your questions because we have never had a CDC assessment, although we were offered one once but had just suffered a family bereavement and were unable to attend. Since then we weren't offered another. I think they observe more and make it as painless as possible for your ds. Hope everything goes okay for you all

That's exactly what I needed. Thanks! I've been trying to compile an early history but it was difficult to know what kinds of things they wanted to know, so a big THANKYOU!

Coppertop - I agree with Dinosaur that you should let them know that you believe your child may be autistic. I advise parents I come into contact with to make yourself as approachable as possible on the subject of ASD. I sincerely believe that many professionals partly avoid giving an ASD diagnosis because they fear the parents' reaction, threfore their abilitiy to accept and cope with it and therefore whether it would be of any use anyway. Let them know you can take it without disagreeing with them or breaking down (do that later ). I also agree with Dinosaur's kitchen utensils example, real stories like this are much more memorable and easy to relate to, e.g. opening and closing doors, wanting specific things in a certain order, hehaviour in unfamiliar places etc.
I also think you could consider asking about statementing and help with DLA.
Ask them too for contacts of local parents with ASD children who you can speak to, there should be one or two, and whether there are any local support groups for ASD or SEN in general.

coppertop - just got a moment - here is the thread I posted on when ds was getting his CDU assessment which gives a description near the top and maybe someother useful info ...

autism thread

respond more later ...

The kitchen utensils thing sounds so familiar. Ds1 has always preferred them to real toys! A lot of his 'ways' seem to be classic symptoms: no waving until 2.5yrs, pointing only from about 3yrs, walking on tiptoes, little eye contact etc. He didn't even flinch when a firework went off next to him but the buzzing of lights annoys him. Thanks again, everyone.

Back to Eulalia and Dinosaur's comments about parents etc - yes, they can be terrible can't they, and when my mother-in-law does her sotto voce (but very loud because FIL is deaf) bit about 'how do they know smacking doesn't work if they haven't tried it' I just grit my teeth and try to catch dh's eye - at least it's something that he and I agree on, and one little positive thing about the older generation's lack of understanding is that it makes us feel closer. Does that make any sense?

Eulalis - sympathies. My parents in law have just left. over a year since diagnosis, and over 2 years since I first raised concerns they still inhabit an alternative reality where ds1 is not autistic. We went to the zoo yesterday- very busy and a total nightmare as they just couldn't change their ways to make the visit autism friendly. We have had some successful trips out recently and I had forgotton how bad they can be. DH was furious. SIL- who is very close to her mum- was stunned by their complete inability to grasp that things needed to be done differently than usual. Total disaster. They are only in their 50's so I think they should just get on and accept it - for some reason they can't and I don't think they ever will. I've said it before about friends, and it's true about family as well. Some people get it some don't. Just don't let their inability to cope with autism affect your belief in what a great job you are doing.