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to be in shock after this (long)

(78 Posts)
Summerblaze Wed 23-Oct-13 16:55:30

DS1 has some developmental delay. We have known this since forever. He was slow to sit unaided (10 months) and to walk (18 months) but rolling, crawling, standing were about average. He was seen by a paediatrician at 18 months and was diagnosed with hyper-extensible joints. He was completely checked to see if it was part of a disorder/syndrome but all was ok and it was decided it was just one of those things. He will find it harder to run, jump, ride a bike, write but will learn to cope as he gets older.

He said his first word when he was 12 months, learned another 5 and then stopped. During his 2nd paediatrician appt when he was 2 yo, he was sent for a hearing test and he was diagnosed with glue ear. First lot of grommets/tubes caused infections and were taken out and then finally last year when he was 4.5 yo, he had them put back in and his adenoids taken out. They have now fallen out and he has passed his hearing tests.

Because of this lack of hearing, he is now very delayed. His speech and receptive language are like a 3-4 yo (he will be 6 in December) but over the last 1.5 years since his hearing has been sorted he has come on leaps and bounds. A year ago, I had to hold his hand so tight in case he ran into the road as he had no sense of danger but now I can let him run off and know that he will not just do one into the road. He is a cheery, sociable boy when things are going his way but he is very toddler like when something doesn't. He likes playing with his classmates but doesn't like it when they don't do something right, but he is a lot better than he was.

Because his understanding is so underdeveloped, obviously he needs extra support at school which they are giving him. Since he started we have set the wheels in motion to get him a statement and 1:1 help. Today we finally got the Educational Psychologist to come to see him at the school.

At the meeting afterwards, he told us that DS1 was delayed by about 3 years and that he had moderate learning difficulties that he didn't think were part of anything else but maybe due to not hearing for 3 years of his early life.

Sounds great, I thought. May get some help so he can catch up. Not so!!

Apparently the council will not give the school anymore money as they have already had their quota of SEN money but it wouldn't matter anyway as DS1 has no chance of catching up. He will always be half to 2/3rds his age. He is nearly 6 but is more like a 3 yo so when he is 9, he will be 4.5 - 6 yo and when he is 16, he will be like a 9 or 12 yo. I said, great so when he is 40, he will be 20-30 but apparently it doesn't work like that so at 16 he just stops learning and will bottom out.

He had said a few minutes before that the pots of money the council give to are those with severe needs who will never live an independent life but my son will but then tells me that DS1 will end up no older than a 12 yo.

I am shocked, confused, mad and upset that they seem to have written my beautiful boy off.

MrsHowardRoark Wed 23-Oct-13 17:01:00

I'm going to say something unhelpful and hopefully someone sensible will be along soon but....

Fuck them! Get a second opinion, do not let them write him off like this.

My Dsis was similarly written off at 7 and my Dad and step mother fought to get help for her. She was (is) severely dyslexic and needed extra help. She got it and is just finishing her Masters degree.

YouTheCat Wed 23-Oct-13 17:01:12

Summer, that sounds like bollocks.

I've known plenty of kids 3 years behind who have caught up a great deal by the end of primary and there is no reason why your ds won't either.

Andro Wed 23-Oct-13 17:03:11

YANBU at all...and I would recommend a visit to the Special Needs Children board (the people there a lovely, supportive and very informed).

cranberryorange Wed 23-Oct-13 17:03:57

What they have told you regarding funding is rubbish. The school does have money and they do have to support your Ds. I'm not sure why you have been told your Ds cant catch up with the right support in place.

You need to get onto the special needs board as they can advise you step by step what you need to do next.

comedycentral Wed 23-Oct-13 17:08:01

My advice? Appeal, appeal, appeal It's going to be a long and distressing process but don't take no for an answer. Could a local MP help?

Hawkmoth Wed 23-Oct-13 17:08:06

You need to enlist the help of your MP. There is no such thing as a quota for special needs money, and whoever said that to you is a total twat.

cranberryorange Wed 23-Oct-13 17:11:57

Ask the Ed Psych to put everything he has told you in writing especially the bit about the money.

I bet he wont because he knows its bullshit.

GandalfsPointyHat Wed 23-Oct-13 17:15:05

Sound like a very frustrating process! Sorry about the diagnosis, could you get a second opinion re prognosis further management?

Summerblaze Wed 23-Oct-13 17:18:40

The Ed Psych will be writing a report about what he thinks about DS1. He said he will put that is has a marked delay and has moderate learning difficulties. He was so fucking patronising, telling me it wasn't my fault.

I just (maybe stupidly) thought that if he hadn't heard much for 3 years and he is 3 years behind now and that he has made steady progress since his hearing was sorted out, then once he got into his 20's, he would be a fully functioning adult. This guy gave me the impression that this wasn't the case.

FlapJackOLantern Wed 23-Oct-13 17:24:02

Please please take what an Ed Psych says with a bit of caution. I had this with my son who has Aspergers. They were wrong wrong wrong in what they said.

It is only one person's opinion. Like me, you may well have to "wait and see" - but in the meantime give your little lad as much support and help as you can. He may surprise you.

YouTheCat Wed 23-Oct-13 17:24:03

Just because he has a few qualifications in psychology does not mean he knows a damn thing. He sounds like an utter idiot.

Tbh I'd be tempted to find out who his manager/employer is and put in a complaint as he clearly knows nothing about additional needs.

Backtobedlam Wed 23-Oct-13 17:25:46

I can understand why you're confused-if most of his problems are due to lack of hearing for half of his life, why it mean that he wouldn't eventually catch up? I'd ask for a written report ASAP, as the way he's explained it makes no sense at all, then you have something in black and white for reference, especially if you decide to get a second opinion.

ShowMeYourTARDIS Wed 23-Oct-13 17:26:27

Children's brains are extremely malleable and grow at extraordinary rates. He is NOT too old. It will take an extraordinary amount of work on both your parts, but it can be done.

A friend of mine was diagnosed with learning delays and his parents were told that he would never be able to attend normal school. His Gran said "fuck that", moved in, and worked with him every day.

By 10 he was a year behind in maths but on track with everything else. He caught up with his maths eventually and has a steady job. He was never the top student and needed extra support, but he worked very hard and did quite well.

pianodoodle Wed 23-Oct-13 17:30:49

Sorry I know absolutely nothing about these things but it's really hard for me to believe that he could "always" be half to 2/3 his age if it has been his hearing that has caused the general delay?!

In your shoes I wouldn't take that as gospel at all. It doesn't make any sense!

thehorridestmumintheworld Wed 23-Oct-13 17:32:46

I don't know much about it but that does sound a bit weird, he will always be about half his age in development terms. Also if that is TRUE it is actually a severe disability he must be entitled to help and maybe even a place in a special school if that is what is best for him.

NotMeNotYouNotAnyone Wed 23-Oct-13 17:33:17

I'm not a specialist and I don't have kids with SEN

But how can anyone just write off a child like that?! He needs support to achieve his potential but right now nobody in the world knows what his potential is! Just like any other little boy!

neolara Wed 23-Oct-13 17:37:39

Err.... I used to be an educational psychologist and would never, in a million years, have told a parent anything like what you were told. Why? Because frankly I'm not able to predict the future, not having my crystal ball in my handbag.

Did the EP do any testing? I might be able to help you make sense of it. What is he basing his judgement on?

It may also be helpful to see if your ds fulfills the criteria for statutory assessment. This is the route to additional funding.

FrightRider Wed 23-Oct-13 17:38:00

Message withdrawn at poster's request.

ICameOnTheJitney Wed 23-Oct-13 17:38:30

Absolute coswallop....don't listen to them. THe Special Needs board here on Mumsnet will help you help him. He has every chance of getting ahead...they don't get to forsee the future.

you are his best advocate and you can get him more I say, go to SN board and ask them....the money and the LEA thing is a well known problem but it doesn't mean you can't get more help at all!

bigwellylittlewelly Wed 23-Oct-13 17:38:51

I've a daughter with developmental delay from a birth injury. I completely understand why you feel so stunned.

IMVHO what they've said to you is BULLSHIT both about his potential and the magical quota. Appeal. Appeal. Appeal. Ask for advice on the SN boards. Fight hard.

And akso. Academic ability is NOT defining his ability to be happy, confident, independent.

LostInWales Wed 23-Oct-13 17:44:54

Well IMHO he sounds like a complete knob. And what bigwelly said. (I have one DS who was very behind, had help and is now average for his age if not ahead in some subjects).

Summerblaze Wed 23-Oct-13 17:47:22

thehorridestmum I agree and if a special school was best for him thats what we would do. However, for some things he is just like a nt boy. He plays, loves going to the cinema, is better on an iPad than me and definitely better on a computer than my DM. He is really funny and knows just how to make someone laugh, sometimes not meaning to but sometime on purpose. At school, I have to tell the other mums that he has some difficulties and they always look shocked. He is polite, never violent (well, no more than any boy his age) and was invited to more parties in Reception than I wanted to go to. If he keeps progressing as well as he is doing now then I just assumed that somewhere along the line he would catch up as once you get into your 20's, the years blur slightly.

I don't feel myself as if he has such major difficulties that he will never catch up but also enough difficulties that he needs extra help. He thrives when he does have 1:1 help either at school or at home.

But what do I know. Maybe he will just stop at 12 and never move on. Just been sat here crying in the kitchen while the dc are playing. Devastated is not a big enough word.

We were told when he was 4 that we should put him up for assessment for ASD as there were some traits. Last week they found out that the forms had never been put in but the old Ed Psych we had and his paed said that they didn't think they were seeing anything in that sense now.

WooWooOwl Wed 23-Oct-13 17:51:18

I've had some experience with ed psychs that come from the LA, they have always been crap.

You need to fight your sons corner and don't take no for an answer when it comes to supporting your ds. The school might not have any money to be able to employ a 1-1 TA for your ds, but that doesn't mean they can't do anything.

ICameOnTheJitney Wed 23-Oct-13 17:54:37

Summer your instinct as a Mother is worth FAR more than what sounds like a very unprofessional assessment. PLEASE repost in SN and they will know just what you're going through....they will know what steps to take next so that you can get the help DS needs and they also know all about the upset you're feeling now and will help with that too. xx

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