to be in shock after this (long)

[Summerblaze]

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.

I feel like offering some Un mumsnet-like hugs. .. what a horrible shock! Def get yourself over to the sn boards. .. someone there will have experienced something similar and can help. don't let anyone write your son off

Thanks for all your kind and 'angry on my behalf' comments and also your own experiences. I was in shock and devastated yesterday. My little boy was just the same as when I dropped him off at school but I felt like I was grieving for his future as he was told he wouldn't have one.

Today after reading your comments (some of which had me in tears), I am back in tiger mode and am going to give them hell. Nobody puts my baby in the corner.

I have posted on the sn boards but just wanted to say thanks for giving me my strength back.

Too right summer, this is just one opinion, nothing else. At school I must have had a 3 year delay, ever in my wildest dreams would I imagine I would have an Msc

About 70% of what you describe applies to by DD as well. She walked at 16 months (like me), only talked with any fluency from around 2.5 and aged 7 has wet the bed three times this week - she'd stopped for a while but seems to have started again. She had glue ear, had her adenoids removed at 3 and by the time she was five had had two sets of grommets.

I appreciate there are some other issues as well but my DD doesn't have SN and nothing you say about your DS sounds like it is something he can't move forward from. Please get another opinion.

Thatballwasin sorry but your DD does sound as if she had SEN, and the most knowledgable people to give help for that on Mumsnet are on the SN boards. They are also the people who have the most experience of battling the system.

SN doesn't mean you can't move forward.

OP some grieving is fine, but don't let anyone destroy your hope/tiger mum.

Hmmmmm... the no more money bit seems a bit dubious to me. I don't know where you are, but in Suffolk we are finalising our bids for Higher Tariff Funding for the next year. This is where we let the LEA know how much additional help some children need and ask them for top up funding to support them. As a rough guide any child needing more than 15 additional support each week can have extra money applied for.

I would guess the timeline is similar across the country, so you could ask school what they are doing about this. If you have an EP report and other evidence of need this would help.

Without knowing your lovely boy I can't help much more, but I know that many others will. I hope the school help you fight for what you want.

I think you need to follow all the advise you have been given and fight, fight, fight. My experience of having a sister with a disability is that no support came easily. My Mum had to appeal and fight for everything. She got there in the end.

No one has any right to write a child off like that. The guy sounds like a knob.

My cousin's son had very similar problems; he was effectively deaf for 4 years and didn't utter his first word til he was 5, not talking in sentences til nearly 8. On top of that, he was very late crawling, walking, toilet training etc. He was all but written off by the "professionals" and she was told he would never catch up.

He's 21 now, talkative, intelligent and very normal.

DP didn't talk until well over 3. His parents were told at primary school that he was intellectually impaired and would not manage at a mainstream secondary school. He's now a lawyer in the city.

Ps 18 months really isn't that late to be walking.

Hi

I'm a clinical psychologist, not an educational psychologist, but often work alongside them. I'm also not in England so not 100% on some of the issues or legalities.

Sounds like he did a British picture vocab test. It's a receptive language test. It's not an iq test or a test of global ability. You can't really tell about his overall ability or non verbal ability from that.

You could do an iq test as this is the correct way to diagnose an ld. (posters up thread are in correct saying an ep can't diagnose - paeds are best placed pre 5 when ability is expressed as motor development etc but later psychologists are the key players here). Anyway that's an aside as he didn't do one. He will have made his assessment on the back of talking to teachers, classroom observations as is common practice. Eps tend not to do ''proper" testing now as they claim the results never tell them more than observations etc alone do.

Anyway, you can't really draw definite conclusions from a short assx. Only what is likely to be the case. I don't think you should push for more testing, just more supports. Your son needs to reach his own potential, never mind where that is in relation to the other kids. The school should get behind you here as they don't want a kid whose needs they can't meet. But if they are saying they can meet his needs without an allocated support for learning assistant then they may be telling the truth.

The ed psych and the council are however Both managing the funds and allocation of the whole authority and only give out to the really most needy and those who shout loudest as there are never enough to go around. Make sure you are fighting his corner .

Keep asking what does he need acess the curriculum and to meet his potential. Do you in your heart of hearts think he is reaching his potential right now this term. It sounds as if he is moving forward from your op. if so maybe he does have enough support in place but you may need to get the big guns out later if he gets forgotten about.

I'm not sure all this stuff about mental age was helpful. I think better to think about where he is in relation to his peers. He is learning and catching up but his peers are moving ahead too. I'm pleased to hear about all these posters whose relatives became huge academic achievers. They are the exception and not the rule. You are right, he is the same healthy, happy, boy who has a full life and relationships ahead of him. Make sure he gets the most out of school he can to give him the best shot.

Sorry what does he need to support him to acess the curriculum.

My friend's daughter had glue ear and was told she needed grommets.
My friend who is a nurse, cut all dairy out of the child's diet and every day gave her a chopped up garlic clove mixed in with a teaspoonful full of honey.
The glue ear and deafness went and she didn't need grommets.

It may not work for all, but worth a try.

OP: I wish you and DS well.
Keep on being tiger mum.
Sometimes the so called experts talk complete bull shit.

So wait, he couldn't hear for 3 years and therefore will never have mental age over 12????

How much bollocks does that sound.

No way.

Thanks guys. I just can't see what he saw in an hour that would make him think that.

Today he went to a party with his own age group. He joined in with all the party games, musical chairs and statues. Yes, he was out quick as he only sat on the corner of a chair and another kid pushed him off and was a bit slow sitting down but when he was out, he went to sit at the front and wait for everyone to finish. He danced to the songs, played tig with his friends and ate his own weight in buns. Yes, I could see his differences but I'm not sure others could. He knows facts too. He was talking about names and I asked him what all of our families were and he knew them all. It's not something we talk about regularly.

Yes, he may be behind in a more academic sense but he is so switched in other ways.

I don't care if he isn't a high flyer when he leaves school. I just want him to be able to have had the chance to learn.

He definitely needs someone to keep him to task. It has already been said numerous times at school that 1:1 really helps him.

I will keep fighting. I have an appt with a service who helps with the statement process after half term so fingers crossed.

And the school are fully behind me. They also thinks he needs more 1:1. I spoke with a TA that does work with him yesterday.

She couldn't understand why he had said that. She said she has seen far worse than ds catch up before leaving school.

My friend's son with severe learning difficulties and profoundly deaf still surprises us with new things he has learned and he is in his early thirties.

My great friend from childhood is profoundly deaf, his family didn't spot it till he was 6 ( how?) And he was written off, but once that was addressed and with supportive teaching he was fine. Is an architect with a couple of degrees.

Your school is right. You are right. The plonker is wrong. End of.

My very severely delayed dd6 who has Asd and in a specialist Autistic song knows the Atlas and where all the countries are, her speech as come on so much, she has a very enquiring mind and continues to amaze us. No prfessional can predict 100% the human brain is always changing ad developing

School doh