call me jaded
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Posts posted by call me jaded
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There are quite a few children in my sons school who have GDD - no other diagnosis (he's in an SLD school) but they don't all have autistic traits or the social difficulties that come with it, although they do have communication difficulties. Logan himself has a diagnosis of autism with global developmental delay. Basically it just means he is delayed in all areas - he is coming on well at the minute but is still globally delayed compared to his peers.
Lynne x
Also didn't mean to infer that all children with GDD are autistic, just that some autistic children are never fully assessed and never move on from the GDD label. In my PCT there is a massive gap in diagnosis because the neurodevelopmental team don't assess children with SLD.
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Yes, I'm tired - it's been a long week. I wish I hadn't said LOW functioning at all, as that is not a diagnosis as such, just a description. And PDD is Pervasive Development Disorder, not Delay. The use of PDD-NOS was discussed a great length for my own son because he doesn't have any repetitive behaviours or obsessions. I'm pretty sure it doesn't necessarily mean high functioning. One thing is for sure is usage of diagnostic terms varies greatly from PCT to PCT.
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GDD is the UK term for the american PDD - pervasive Developmental Delay
From memory I think there are four PDDs. PDD-NOS (PDD not otherwise specified) is low functioning autism.
Depending on where you live in the UK you may or may not move on from GDD to LFA. I think it depends on whether your PCT thinks it's worth using their limited resources on carrying out more assessment on someone who is low functioning and already accessing special school, harsh though that may seem.
ETA: we were known to the paediatric team at ten days old, it's that obvious that something's not right.
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Yes - it was DS's first label!
The geneticist thinks there's something genetic - Nicolaides Barraitser syndrome. Having been giving this some thought for the past year I think he has autism as well.
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It's always a good idea to step back for a while when things are so stressful. Take care of yourself as well as the ones you love.
I've just learnt that a very good friend of mine has passed away quite unexpectedly today, after a period of being a little unwell. Sad times all round.
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I did a caravan on my own once. I was asleep by 10pm from all the fresh air... Have fun.
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I think I found it so alarming because when I said I wasn't sure about it they said they weren't either! But I went in and we spoke mostly about the room, which seems to have been his major stumbling block.
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Update!
Practical drama in DS's case is all about turn-taking and social interaction - a social skills programme by another name. No expectation of performance whatsoever. Phew!
He is now entering the classroom. Not taking part in anything, but becoming part of the group. They have actually changed the lighting in the room to get him in there and are doing more over half term to make it accessible.
Apparently they had a 'challenging behaviour week' last week with most of the students, lol. DS came through fairly unfazed.
Looks like we're through the teething troubles.
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What about putting your yahoo email into Outlook? It's much more commonly used than yahoo and likely to work.
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do you have a link to the review?
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Quite sickening.
Just modified the title of the thread so that readers can have an indication of the graphic content.
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At the moment I am about 90% GF - only have it when there's nothing else. Same for DH. You end up eating loads of fruit and veg (prawn stirfry tonight). Increasing the anti-oxidants always seems to help DS with immune issues - lots of pomegranate and cranberry juice.
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Have you tried colour therapy on your son? Colorimeter glasses helped enormously with the light sensitivity issues. Googling 'visual stress'
should bring some answers.
I am convinced that he would benefit at some point. but at present will not tolerate the examination process. It's on my to-do list, under 'One Day'.
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My son never produces tears. He is very dyspraxic. His eyes are very light sensitive and he used to have tears running down his face every time we went outside. That doesn't happen now. I seem to recall some medical person telling me that as he grew the tears would drain better. He does still cry at films, etc but no tears, just great big gulps.
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yes, avoid anything that says 'flavouring' as it could be in a wheatflour base.
Tamari soy sauce is GF.
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It's not going well... quite explosive result. Great for the day you're getting a new hot water tank and have a thimble-full of water.
ETA: I should know by now, but I do keep pushing the boundaries. Maybe in another couple of years.
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Anyone who's tried to find a GF porridge knows the alternatives are a bit gritty and what my DH calls [son's] grey brick because if you leave it long enough you could build houses with it. Well we tried the free from version this week and it's just like regular porridge. In fact I think it is regular porridge and we've been avoiding oats for no good reason.
Off to do a bit of research.
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Oh good luck! You can get dried rice nooodles that aren't outrageously priced and are great for 'spaghetti'. The other thing I do is cook in large quantities and freeze. That way your gluten eaters can eat something less expensive whilst the other one(s) are still catered for. And we rarely have coffee or a snack while we're all out (bring our own) and that saves a fortune too.
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It's always a shock to see things written down, isn't it? They tend to leave longer than six months before repeating tests, but it sounds as if they're doing all they should, which is positive.
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Interesting that the CP wanted a cognitive assessment too. Start with writing to the EP asking for reasons for the refusal.
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He's not verbal at all and it's a special school, so the options are going to be very limited. They seem very willing to address this, so here's hoping.
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Not a raw nerve, Mumble. I think we are just viewing from completely different perspectives.
DLA is about care needs and additional living expenses. Awards are made for children who need watching over and supervising more than other children of the same age. I don't think any child (under 18) should have control of it whilst there is someone retaining that intense level of parental responsibility.
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As a parent my ability to work is completely 100% affected by my son being disabled and the total absence of suitable care for him during school holidays, so I think it's completely fair that ALL his DLA goes into the household pot to compensate for that. It goes to pay higher heating bills, specialised shoes, having two babysitters instead of one on the rare ocassions we go out, a new shower, a new tumble drier and repairs to the washing machine, all of which have taken a hammering because of him (bedding washed every day, shower three times a day). He also empties any shower gel, conditioner or shampoo down the drain if you're careless enough to leave it lying around and my younger children are always forgetting so I buy those EVERY week, pyjama pants for when we're going somewhere strange (NHS only supplies nappies). Also taxis when you would normally walk with your other children, a hire care on the airport when we go away is essential (not so with the others), valet parking made it that little bit less stressful (use local transport with the others), ohh and an extra seat on the plane so that no-one sat next to us. That's easily £5,000 in additional costs in the past year. Factor in my loss of earnings, well the difference between what I used to earn and what I do now is gettng on for £50,000 a year (and that's based on my salary 10 years ago). So, no, I don't have any qualms about 'taking' his DLA from him.
His GFCF diet isn't that expensive as it's a case of cooking from scratch (the cheapest way!).
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My brother has just nearly had a heart attack because he went into the sitting room to check my radiator valves and what he thought was blanket suddenly moved. DS lol'd along with the rest of us.
Newbie - rough time...
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It saddens me to hear these stories - you are not alone, that's for sure.
Hope you can bring some peace to your lives after such a traumatic time. NAS has some good groups for Aspie girls and there's a good few of them on here, so ask away!