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APD does it exist................

(3 Posts)
nickminiink Fri 23-Sep-11 09:04:24

I have a 10 year old son with LD's, he has just been diagnosed with dyslexia and has always had SLD. For years we have been told my son has a poor working memory, word finding difficulties, sentence recall difficulties & auditory processing difficulties. It wasn't until I discovered mumsnet that I heard of APD for the first time. It just seems all the professionals (especially in our district) have not heard of APD or know very little about it. We went to the GP and he had to look it up on the internet when in the appointment, the Paed had no knowledge or expertise, the SLT did not know much about APD and was puzzled when we mentioned it, SENCO no idea about it and now the EP acknowledges APD but still no experience with it. We are currently pursuing a statement and going through the SA process. The report from the EP states "I note the possibility of an APD is currently being investigated by specialists at GOSH via child's parents. APD is considered to be under researched area at present, with much debate between professionals as to its existence, and of course, it is linked to dyslexia".

So with this statement I can see why many professionals have no knowledge or chooses to ignore APD. Its so frustrating as you get the impression we are making this stuff up and we are wasting our time, as it is us the parents pursing this and not the professionals. Also if there is a debate to its existence then why are we going to GOSH to their APD clinic, is this not enough to convince these professionals it does exist and supported by a renowned hospital such as Great Ormond street..

Good news we have now received our appointment to GOSH in November, so I guess it does exist.

dolfrog Fri 23-Sep-11 13:38:55

nickminiink

Been there and got the T-shirt. This has been the situation since 1998, when an inspired paediatrician first summarily diagnosed our DS1 as having CAPD as it was known then.
For a wide range of support and clinical professionals to accept the existance of APD means that they will have to rethink and possibly be retrained regarding how they perform in their future careers. For some it may mean that their main source of income will almost disappear. Then there are the various support agencies who will have to change how they define their own specialist area of interest, and how this may affect their main sources of funding. So there is a war of invisible disability politics, which is really about money. The professionals are frightened of loosing income, influence, status, etc,; and support agencies having to realign their sources of funding, and explaining how scientific advances can change the universal understanding of what they had previously been claiming and promoting.

So the only way to combat this top down ignorance is to promote bottom up information, research papers etc to prove them wrong. So parents like you and me have to unite and take on those who do not have the interests of providing the support our children need, but only their self serving interests.

Was at GOSH this week, and was informed that about two years ago they were getting 2 APD referrals a month, now they are assessing 5 potential APD children a day. And this is purely down to increased awareness of APD, which is mainly due to the APDUK, which is purely a voluntary organisation with very limited funds.

nickminiink Fri 23-Sep-11 15:17:05

Thanks Dolfrog, well as mentioned this has all been done of my own back without any professional input regarding APD to help my son. Yes after months of convincing my GP/Paed this condition does exist and it is something I would like to pursue based on the numerous reports stating my son has poor auditory memory, word finding etc, I finally got them to do an out of county referal to GOSH. I think the problem I have ( and probably other parents who do not have a clue how to help our children), is I read so much about learning difficulties (as we no official dx, dyslexia given last week) I start convincing myself my son has a trait of everything and I guess I am like this with APD. So the referal was to heopfully give me some more idea of my son's learning difficulties with either an APD dx or not, at least then if he hasn't we are back to square one trying to figure out his special needs.
Thanks again.

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