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I'm in complete shock

(16 Posts)
Summerblaze Wed 23-Oct-13 17:14:13

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.

All he kept saying was that if he could read to age 9 level then he could manage and not everyone goes to university. I'm not at all hung up on if he goes to nursery or not, but I do want him to have the opportunity to maybe live independently and have a job and a family. If it not meant to be then so be but they seemed to have just decided now that he isn't worth it. He's 5 FGS.

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

PolterGoose Wed 23-Oct-13 17:34:50

Message withdrawn at poster's request.

eightandthreequarters Wed 23-Oct-13 17:37:25

I'm no SEN expert (just a parent with a SEN DC) and I know someone will be along soon, but... so the ed psych thought DS's problems were down to the hearing issue, and not an undiagnosed learning difficulty? Surely, if it's down to the early hearing loss, there's no reason for him to 'bottom out' at 16? They should be identifying the support and professionals he needs so he can learn to the very best of his ability and reach his potential. I'd be rather WTF at that prognosis.

2boysnamedR Wed 23-Oct-13 18:45:07

Sorry this sounds like rubbish. One assessment and can predict his future that precisely? Or if he really believes this your son gets no help omg - just shocking!

2boysnamedR Wed 23-Oct-13 18:47:01

In two weeks I have gone from "you'll never get a statement" to "we need to get evidence together for a statement ASAP"

Never let anyone tell you your child is right off. He is not. Prove them wrong by fighting back

claw2 Wed 23-Oct-13 20:22:17

EP is talking rubbish is the short, polite version.

Ask for a copy of his report and apply for statutory assessment yourself.

Lesley25 Wed 23-Oct-13 20:29:47

Can i ask if the school commissioned the Ed psych?
I don't wish to be cynical but is there any way an Ed Psy commissioned by the school could be biased in any way?

As everyones reiterated, i just cannot fathom how any person or professional can comment on what a person will be like at 16 when looking at a 5 year old.
Its utter Bullshit to be honest.

stillstanding29 Wed 23-Oct-13 20:49:26

Hi summerblaze That just doesn't sound right. The first EP my son had was horrendous and it seems to me you've found another daft one. He met your son for how long and has his future predicted? Rubbish.

Take it with a big pinch of salt if you can. You can't predict where kids will end up (especially if they've had a specific problem like hearing) and I'm sure I've heard people say that actually kids can keep progressing into adulthood.

I don't have any specific advice but that EP feedback sounds way out of line.

MissBetseyTrotwood Wed 23-Oct-13 21:07:26

That's really, really far out of line. Look at how far he's come! I can't believe they're writing him off like that.

You poor thing. Is there any way he can be seen by another EP?

stillstanding29 Wed 23-Oct-13 21:24:13

Will you still get a statement for your son? I have always been somewhat woolly about what it means money wise for the school. But even if the statement doesn't bring extra funding it will set out specifically what the child needs and is then entitled to. I am struggling to think of specifics from my sons statement but one of the requirements is that he is to be taught by staff trained in dealing with kids with ASD. So even if it doesn't come with extra money it would be useful for making sure the provision is appropriate.

That EP may be giving up on your son but it's time for you to get into fighting/demanding/being a pain in the ass mode. That seems to be the deal when you have a kid with SEN. It's a bugger.

Summerblaze Wed 23-Oct-13 22:23:56

I had no knowledge of statements, ed psychs etc before this so am working blind really. So far this is what has happened.

The staff at nursery mentioned to me at the age of 2 that he seemed behind. We were already in the process of seeing the paediatrician and was booked in for a hearing test. During his operations etc, he was getting speech and language appointments organised by the paed and the SENCO at nursery was taking him out for 1:1 sessions twice a week.

When we started thinking about school the nursery SENCO suggested we make a referral to the Ed Psych to start the ball rolling in time for school. The Ed Psych came and said that they would keep checking to see how he went when he started school. They kept coming while DS1 was in reception and it was decided in June that we would start the statutory assessment process.

He is still getting speech and language therapy at school and the school also has some things in place for him such as going out for 1:1 sessions and a lunchtime group.

The area we live in is governed by one council and the school is under a different council so this Ed Psych is a different one than we have seen before as he is from the council we live under not the school one we have seen before.

He worked with DS1 for an hour, showing him pictures and asking questions about them and asking him questions about himself, his family etc.

The school really want him to get the help so I don't think they are biased towards it.

NoFucker Wed 23-Oct-13 22:35:41

I'd love to have that crystal ball!

I work as a SENCO and can say confidently that I cannot predict where a child will be as an adult. I've seen everything from a year 2 child with 1:1 and huge learning needs go to a top university by 20 to an average 6 child old get stuck there developmentally into adulthood. I have statements come in year 6, I've had statement (by mutual agreement) ended by the juniors.

Two issues:

1. Get a second opinion, flag up your concerns to both the school and LA.
2. Funding is not your or your son's issue. He is entitled to receive the support he requires. Seek advice from your local Parents forum or groups that will be more au fait with your area.

devilinside Thu 24-Oct-13 00:03:41

Apply for the statement yourself, we just did that and the school have suddenly jumped into action (saying they were just about to do it anyway, yeah right). After saying for years he wouldn't get one, this is a 7 year old who can't read or write

Summerblaze Thu 24-Oct-13 07:15:27

The school are on board and have organised it. They have sent in the application to the council and it was the council's ed psych that came and told us all this. The school want him to get the help. X

magso Thu 24-Oct-13 14:18:44

We had a shock when a private EP assessed ds at age 6 - put him squarely in the 'SLD always needing support' bracket. The county EP had 'minimised' as had school all along, resulting in the LEA wildly misinterpreting the results and refusing a SA at rising 5. I was just wondering if perhaps your EP was trying to make the case for maximum support, to try to help your ds?
Brains do not stop developing (although it slows down progressively) at 16, (maturity is around 26 I think). We all go on learning both in education and from life experiences, well into adult life. It is thought the late teens and early twenties are even more important for sn young peoples learning hence the change to 25 not 18 for some aspects of sn education.
5 is really very early to predict the future especially if a hearing difficulty that may have held back development, has been reduced.
A statement should lay out what support your son must receive, so although the school may not get extra funding ( because they already have it within their sn budget) they have to meet the needs outlined in the statement. Some areas only give additional funding for statemented children with very high needs.

Sunnyshores Fri 25-Oct-13 11:26:24

I have no professional knowledge to impart, I just wanted to wish you luck and say that you need to fight for your beautiful son...NO-ONE has the right to write off his future and even if they are right in saying that his academic learning will always be below average, there is so much more to skills, art, travel, sport, music, a loving supportive family will ensure his life is full and has meaning which he can develop himself when older.

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