At a loss - so upset just cannot cope with this upset anymore

[Jerbil]

Background: DS1 not diagnosed because according to CP there isn't a diag that fits the bill,. admits there's issues and quite supportive.
DS1 referred to SPLD clinic for visual issues by optometrist.
Under CAMHS mainly for eating problems.
CP report even states ASD developmental history, but not got ASD, but watching for ADHD.
Waiting for OT, loads of sensory issues, restricts eating and clothing
So, following a multi-agency meeting at School the upshot is that CT, LSA, HT have all basically said he cannot have these issues cos they just gave him a spare PE kit the other day and he just put it on without an issue. This is a child who wears a school uniform to a party on a Saturday cos he feels comfortable in it. Basically, he does things they tell him cos he's quite rule bound in the school environment.
Then he has social issues but none in school! though he restricts his friends to just a few. he plays one game in the playground, his best friend has told his mum DS1 is repetitive! (not in those words)
CP even sat in MA meeting saying there is no diagnosis but the issues are real. Parent partnership repeated how some children can be different at home.

I feel like I've been completely undermined, and they are just after proving that there's nothing wrong. Oh, and he just doesn't like writing!!!

Sorry but can hardly see the keyboard for tears :-(

I'm afraid you need to pay for an independent thorough assessment, and maybe even chase a dx of 'something' even if not exact fit. Developmental Disorders dx is not an exact science. ASD is being split up a bit soon to account for this.

What Starlight said.

Would also try and pay to see a developmental paed privately rather than a community paediatrician. GP should refer you to such a person.

Your son likely keeps a lid on all his frustrations of the school day only to let it all out at home. School staff as well are patently not qualified to make such daft pronouncements.

CAMHS certainly have their place but ASD is not always their area of specialty or expertise. Also they may not be exactly right re eating problems; I found a private based dietitician/counsellor far more helpful and worked with us all as a family re DS's eating issues to do with texture.

Hiya I'm a SEN Coordinator and I'm really sorry you are going through what sounds like a very frustrating situation. Is there no-one at the school who is prepared to be more understanding? I would always be keen to hear from a parent again if they felt that their child's problems are ongoing and worsening. Ask for a meeting with the school's SENCo as they should be able to look at more options for you. Also, your son's paediatrician should have sent a Connors questionnaire to the SENCo - filling this in would definitely prove to the school that there are issues and should kick start the diagnosis of ASD/ADHD or rule them out. Keep persevering - your son has a right to help and these professionals must provide it. Keep your pecker up :)

Thanks all. Great to hear from a SENco, TBH I'm considering a school move and would do it tomorrow if I didn't feel it would be too hard for DS!.
DS1 has been assessed for ASD. with the Child Psychologist report saying he has a strong developmental history of ASD, but not appeared that way in the ADOS (interacts well 1 to 1 particularly with older peers/adults). Also school observation appeared social.
They are going to assess for ADHD I believe (wouldn't start it till he's 6, and he now is.
Connors not completed yet. he's just so different in different situations.
I know he's not the worst but I believe he's a bright boy and education is failing at the moment.
I have a 3 year old DS2, so sociable you wouldn't believe, an imagination that is wonderful to watch, and eats like a horse, and entertains himself for a reasonable time for a 3 year old. I know the difference.

Sorry you are going through this jerbil. Going private may cost a lst but at least his issues on paper and although doesn't mean better support at school at least you have something to prove his needs and fight for support appropriately.

DS is very social in school too, but those are familiar peers, he doesn't know how to initiate interaction with a new child, whereas my dc2 who is a social butterfly and only 3 makes friends everywhere and it's the most favourite in the nursery.

How old is your son and where do you live? People may be able to recommend some good private therapists that may be worth looking into.

It is really hard to get a firm diagnosis at a young age, so they should be taking your expert knowledge as his mum into account! Keep pushing, and if you really are unhappy, I think that it is reasonable for you to consider moving schools as your child is still quite young. Stick to your guns and keep us posted.

Hi Jebil, just wanted to add that we were in a similar situation with Dd3. We knew there was something going on but because she followed the rules and didn't cause any trouble at school they kept saying no issues.

It is really frustrating and in the end we did opt to move schools, it was the best thing we could have done. Within weeks the new school were seeing all her issues and within a term they had helped us to get a Dx of ASD.

Dd3 is bright too but was underperforming in lots of areas, she still is TBH but now she is getting the right support and is slowly gaining confidence.

You have to keep fighting Jebil and while you are at it, go and look around some other schools just to see what your options are.

Good luck.

Am climbing out of a very similar position. If I'd known what I Know now 3 years ago when I had the financial means I'd have paid to see a private neurodevelopmental expert like Daphne Keen Or Gillian Baird right off the bat and insisted on a diagnosis - ANY diagnosis!. It has to be someone "respected" by the NHS. Unfortunately in my trusting naievety I let things deteriorate to the point where I haven't been able to work (lone parent) for the last 2 years out of 3, and any savings I had are long exhausted as the debts mount up.

The "label" of a diagnosis is to me only important as it FORCES certain groups of obstructive professionals to get off their arse, stop tail chasing and start implementing support. SOME support being better than NO support at all, as a starting point, as once a particular route is signposted as being effective, it then becomes progressively easier to build upon those foundations when arguing your child's case to the powers that be.

Sorry for the above waffle but what I'm trying to say is that I really think in situations like this if you have the means "short circuit" the system and go private asap.

In conjunction with this, if you haven't posted that letter to apply for a statement, do so today (the IPSEA website gives guidance).

Hi all

Should've said. I spoke to an EP last year. She told me not to go to her just yet as she thought School were doing the right things at that point. But, to spend money getting an OT opinion. which we have. She said signs of DCD, and many sensory differences. that cost £250 and I haven't spare money left now.
She and the community pediatrician had said he needs treatment for some fine motor skills including his pencil grip but because he can use a pair of scissors school say fine motor skills are not an issue. Paed and OT said excessive pressure on page for one.
Problem seems to be with the teachers and HT if they don't know it and/or see it it doesn't exist!!
arranged a meeting with the SENco tomorrow.