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'We don't like to diagnose / label anymore'

(102 Posts)
2boysnamedR Wed 26-Jun-13 06:44:03

Sorry me again! Been at this game for years but having the toughest month of my life. I am being told that if my ds has dyspraxia or asd then they don't diagnose these any more. Only a MRI would reveal dyspraxic brain function ( not his symptoms maybe?) is this true?

Why is this so bloody hard? Why is no one on our side?

Davros Wed 26-Jun-13 14:17:18

The scary thing is when they are not liars but genuinely believe the crap misinformation they are passing on

mrslaughan Wed 26-Jun-13 14:26:53

An OT and physio diagnosed DS Dyspraxia.......

Dyspraxia is so much more than general difficulties with movement and co-ordination....sorry just have to point this out as DS has fine motor dyspraxia, but school won't accept it as he is not really clumsy.
the dyspraxia foundation had a great fact sheet on there Facebook page a few weeks ago, but can't find it now

mrslaughan Wed 26-Jun-13 14:28:40

the stuff our senco comes out with - well......
but she is well intentioned, just ......I don't know ignorant?, not bright enough to get her head around all of it? I really don't know., but I find it scary.

TOWIELA Wed 26-Jun-13 15:23:21

Kiriwawa - my DC's OT did diagnose dyspraxia (in fact, 2 indie OTs 3 years apart both made the same dx). It has never been questioned and the LA have totally accepted both OTs' dxs.

bochead Wed 26-Jun-13 16:27:10

OP -email your advisor, asking them to confirm that they don't diagnose or label. When they confirm forward it to their boss and the relevant professional body.

How can you support or help someone if you don't first define the problem? We are in a recession and if people don't want to, or aren't competent enough to do their jobs, then it's time to replace them with people that will.

bialystockandbloom Wed 26-Jun-13 17:09:35

OP what a total bunch of crock the SENCO is giving you angry

You know you don't need her to apply for a statement? (Applying for statutory Assessment is the first step.)

Sorry, I don't know your full story, but have you been to GP? Been referred to paediatrician?

Btw there is a book The Velvet Bulldozer on amazon written by a parent, which guides you through the SEN system.

2boysnamedR Wed 26-Jun-13 19:17:34

Thanks for the help.

I could on and on about my sons backstory. He was late to walk, tripped over his feet, one leg he would not bend, he just flipped it forward while bending the other with his foot turned inwards. He then fell over his feet. Fight number 1) get him to see a expert ( podiatrist) not the GPS job, ask hv, not her job, ask the gp. Go round that loop a few more times then get a referral from the hv I asked 10 loops back. Then everything else came late. First words at 18 months but one word a month which over the next two years increased at the amazing rate of 2 words max a month. Told by hv, they are all different, don't comparing to sibling ( or any child his age). Beg for salt, get ignored twenty times, get a referral, wait a year then lose rag one day and phone to be told they were just about to write for appointment in three days ( bollocks where they) et told he is behind, bye bye see you in six months. Get pissed off kick up a stink to get app with community paed. She says oh dear, come back in six months. Do that for two years while they wait for him to do the magic 'they all catch up by the time the get to school'. Son reaches school - oh shit! He didn't catch up! Panic time. Get referral to or for marked hypermobility. School take note of my concerns and then ignore them. Complain to head. Gets iep And school action plus 24 hours later! Then fast forward a few months to this month. See senco and teacher who tell me my son is failing. He never up with his peers he will never be normal, speech is major issue but also he can not process information and retrieve it (OT and salt confirm this) he has memory and sensory issues. Plus lot more symtoms. Salt say no statement = no help. The volcano of frustration in me explodes, I make a formal complaint to the nhs and here I am today, confused, angry, upset, devastated but mainly mad and out to get my son a diagnosis and statement if I can so he starts to get help rather than 'that's not good, come back in six months' until he is 16 and they can sign him off

2boysnamedR Wed 26-Jun-13 19:19:11

Who do I email saying they do not diagnose? OT? Paed? Still not sure who should diagnose - sorry its so confusing

2boysnamedR Wed 26-Jun-13 19:25:23

He is 5.5 now, only eats five foods, will not wear trousers on his hips as they hurt him so they fall down and he constantly exposes himself, he can dress but gets it all wrong, can't use cutlery ( not that he would eat anything that needs cutting up) he can not get the concept of he / she however much we reinforce it. Calls objects thingies as he can't word find, has little awareness of his safety ie cars road. Is very shy, does not talk to adults, complains people are pushing when really they are just brushing past him. Can be violent but only with his siblings. And he talks gibberish, I can't understand him. He has good points too ;0)

2boysnamedR Wed 26-Jun-13 19:27:00

But mil insists he is 'perfectly normal' so who am I to say the above isn't the norm? After a whole year if school he can count to ten so I do count my blessings

2boysnamedR Wed 26-Jun-13 19:30:43

I have a 15 month old who doesn't walk, talk, clap, point or raise hands to be picked up or wave just like the older boy - but guess what? They all catch up in the end, I shouldn't compare them. He will catch up by five! Thank goodness for that good news! I will wake up on his fifth birthday and he too will be ok

2boysnamedR Wed 26-Jun-13 19:33:40

My eldest is in the top group for maths English etc and has a very high intelligence so of course I have too high expectations from the younger boys. Only gifted children have more than ten words at three I presume? Who am I say what is not the norm?

mrslaughan Wed 26-Jun-13 19:36:13

There are other more experienced posters here.... We went private , because we could.
But I would have thought you want formal assessment from Ed psych (processing issues), SALT (language issues) and OT ( co-ordination/physical/sensory issues). This would ideally be co-ordinated by developmental pead.

Do you know about working memory? This would explain the recall - it doesn't mean they can't learn, it just makes recalling info slower for them. But also there are lots you can do to develop working memory, there are great computer games that help this....
HTH

2boysnamedR Wed 26-Jun-13 19:50:11

I could go private but as far as I have been told, private will be ignored / discounted by Surrey so it would be for my peace of mind.

Any specific games you can think of?

TOWIELA Wed 26-Jun-13 20:05:22

After my DC was refused SA, for the Appeal we went private for SALT, OT, and EP. By the time we got to two weeks before Tribunal, the LA had to concede because the reports provided overwhelming evidence.

In some respects (morally wrong tho), if you get a refusal to assess (so have to Appeal and get private reports), you go to being a position of strength. This is because the LA have said that your DC doesn't need to be assessed, so they can't do any of their own reports without getting an order from a Tribunal. So it'll be hard for them to dispute any independent reports and may have to reconsider their refusal to assess before Tribunal because they won't have any (recent) reports to counter-act against your indie reports (this is what happened in my DC's case)

If the Tribunal says 'yes' the LA must be allowed to do reports before Tribunal, then you will still have the private reports which may or may not agree with the LAs reports.

I hope this makes sense!

mrslaughan Wed 26-Jun-13 20:11:35

We did cogmed, but your son may be a little young for it..... Well actually I think there is a "younger" version. If is about £550 pounds - which is 6 week intensive then 100 more sessions spread over the year..... The hard thing, is I think when you spend that sort of money you want to know its the right thing - it was recommended for Ds by the Ed psyche, but there are cheaper options..... But not as rigorously scientific with there approach , jungle something .... Wait I will look it up.

The advice we got was it would take years to get our son anywhere close to diagnosis - as he was not "bad enough", and he would never get publicly funded oT, again because he is not "bad enough" - so we fund his OT privately - which is a struggle at times. But the results have been amazing.

mrslaughan Wed 26-Jun-13 20:14:31

Jungle memory grin

moondog Wed 26-Jun-13 20:25:45

Jungle Memory is ace. It's not going to vanish away your problems but my kids do it every night (only takes about 10 minutes) and I have seen vast improvements in their working memory. It's fun too.

2boysnamedR Wed 26-Jun-13 20:42:16

Towiela did they have to listen to your private reports for the appeal? I bet that differs by county.

This is like a test - or a marathon! Only those with most stamina will get over the finish line!

2boysnamedR Wed 26-Jun-13 20:44:02

My friend has a son with autisum. She didn't get a statement - I am beginning to see why. So sad as her dd also has symptoms now at four she can't talk. Talk about a failed system.

2boysnamedR Wed 26-Jun-13 20:47:48

With tribunal are we talking taking LA to court? I don't think I have that kind of strength / money

FanjoForTheMammaries Wed 26-Jun-13 20:55:49

Serious question..does jungle memory work for adults?

I got nasty bang on head 4 years ago and sice then memory is not what it was.

TOWIELA Wed 26-Jun-13 20:56:50

2boys - yes it is a marathon.

Tbh once you get to Tribunal, taking on board indie reports (as per my earlier post) isn't different county by county because the full force of the judicial system will now be in play. It's not about illegal LAs policies once you set the proper legal ball rolling.

Yes Tribunal = Court. The LA will rely on the hope that you will cave in before Tribunal. But there are so many wonderful people on this board who have done it and will help you through the process.

FanjoForTheMammaries Wed 26-Jun-13 20:57:25

2boys..been there with the catching up...was told DD would suddenly catch up at 4. hmm

mrslaughan Wed 26-Jun-13 21:24:02

I can't see why it wouldn't work for adults..... (jungle memory that is). I also know cogmed does an adult version as my working memory can be atrocious ( hopeless with names) and would love to do it - but all spare money is spent on DS.....

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