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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Please help! Advice really needed!

57 replies

RoadyMcRoadUser · 24/03/2024 09:23

My son has just turned 4 and we are awaiting a formal ASD/ADHD diagnosis - it has been suggested that he is at the what was formerly known as Asperger’s end of the spectrum (sorry I have no idea what any of the correct terms are, still learning, trying my best not to offend anyone) with significant ADHD.
To summarise he is very bright particularly around numbers and letters (can count into the 100s, can do simple sums like 25+3, can write his name, can read simple words by sight but does not read phonetically if that makes sense, has an excellent memory, very loving and affectionate, is friendly and has good empathy (will alert preschool staff if another child is upset, becomes upset himself if another person is crying and needs reassurance they are ok and being helped) but has social communication issues so although he is verbal and able to answer closed questions and make statements, he cannot maintain back and forth conversations although this is improving little by little. He struggles to follow instructions when hyperactive and is very, very impulsive with zero danger awareness. He is toilet trained although this took me a really long time! No issues as yet with noise/lights/sensory issues. He can have meltdowns when tired or when something triggers him.
He is due to start school in September. We have just got the news that the LA have agreed to issue him an EHCP which mentions throughout he needs a high level of
adult supervision due to his hyperactivity and impulsivity, my friend who is a teacher has read through it with me and believes it to be pretty good albeit a couple of
details I need clarified and then have the final draft all agreed and ironed out.
Every professional who has met and assessed my son has unanimously recommended he attends mainstream primary with a high level of adult supervision. This is what the EHCP recommends.
I fought bloody hard for that EHCP after they turned down the request to assess twice. I was crying with relief when it was finally agreed to issue him with it.
The relatively new manager at the preschool he has attended for the last year dropped a bombshell on me on Friday that she thinks I haven’t thought enough about special school for him. I said this wasn’t what was recommended at any point by multiple professionals who have seen my son over the last year and she said “they don’t tell parents the truth and that’s where I come in”
I made the point that I’m sure developmental paediatricians, ed national psychologists, SEN advisors etc etc etc have had to have difficult conversations with parents before and tell them things they don’t want to hear but she continued to dismiss this. She admitted later in the conversation she hadn’t yet even read the draft EHCP recommendations.
I was so offended that she told me repeatedly if he was her son she would be thinking about the bigger picture of special school. I spend every waking minute worrying about my son’s future. It literally consumes me.
she also said all of this not in the context of a meeting but out of the blue at the preschool gate in front of my son and a couple of other parents who had arrived to collect their kids.
I am absolutely livid at how she has arrogantly dismissed what’s been recommended for my son, inferred repeatedly I’ve not thought enough what’s best for him, and did all of this in front of my son.
It’s left me questioning so much - I had thought for the last year he’s been looked after by a team who care about him and understand him but the way this new manager spoke, I got the vibe that he’s viewed negatively and spoken about negatively amongst them. if this conversation had taken place 6 months ago, I would have walked away and never gone back (I obviously realise I cannot unsettle him by enrolling him in a new preschool for the last 3 months of the summer term
before he starts school in September).
Two questions here really - number one,
is anyone with ASD experience able to advise whether mainstream or specialist school provision is most suitable for a child who presents as my son does?
Question two, am I within my rights to say I don’t want this woman anywhere near transition planning for my son? And as she’s the nursery manager who’s self appointed expert on all topics apparently and is placing herself front and centre of his transition planning, can I actually refuse consent for her to be involved? How does this work?
Any advice or pointers gratefully received.
I am in such a low place with all of this at the moment. Worrying how life will be for him and desperately don’t want to make the wrong decision for him.

OP posts:
IfItWereMe · 24/03/2024 18:43

Headfirstintothewild · 24/03/2024 10:17

If the EHCP uses the wording as you have posted here then it is very far from good enough. The provision in the EHCP must be detailed, specified and quantified otherwise it isn’t worth the paper it is written on. If the wording is vague and woolly DS may not get the support and it is unenforceable. For example, “adult support”, “key adult”, “skilled adult”, “adult trained in”… are all too vague.

100% Agree. “Weasel”words like “should have access to….” “Would benefit from …”
mean NOTHING. You must have clearly stated in the plan EXACTLY many hours per school day/ week your child will be supported…will that be on a one-to-one basis, does it cover lunchtime?. What happens if you get all that and their support person goes off sick for weeks or even days…OP, I found it really helpful to actually go to the local primary schools and observe, just from the door, what happens in a busy classroom. It is very different from nursery.
One final thing, don’t worry his life away. Transitions are always difficult ( for us parents, not just our DC ) but usually things settle down. We had some very very difficult times but not all the times. We have had as many wonderful times. Remember also that any decision made can always be revisited. Best wishes

IfItWereMe · 24/03/2024 18:51

AuntyMabelandPippin · 24/03/2024 13:58

OP, I work in a Primary School.

We have a child who came to the school with a statement very, very similar to yours. Their parents were worried like you, but that child has thrived with us, and is totally settled and happy in class. It took a while, and they still don't like the start of a year in a new class, but they really are enjoying it.

I would start your son off in mainstream, and see how he goes.

Good luck.

Can I just say… I LOVE your Username- probably because my DC was introduced to “Come Outside” by his utterly wonderful SEN. Teacher ( over 20 years ago 🙈) and still watched the odd episode on YouTube 🤣

IfItWereMe · 24/03/2024 19:00

Headfirstintothewild · 24/03/2024 15:42

As you have probably worked out by now, “assisting adult” is too vague.

IPSEA has a model letter you can use to help you respond to the draft.

Go through all the reports. Highlight all DS’s special educational needs in one colour and all the provision to meet the needs in another colour. Each need should have corresponding provision.

Then go through the draft and make sure all the highlighted needs are in B and the highlighted provision is in F. Make a note of anything the LA have omitted from the draft, any needs without corresponding provision, any woolly and vague wording, and anything the reports have failed to include.

When you come across vague and woolly wording, check the reports to see if they are woolly and vague or if the LA has watered down provision. If the reports are vague and woolly, ask the LA to go back to the report writer(s) to make the reports detailed, specified and quantified. Provision in EHCPs is taken from the reports, so if the reports are vague and woolly, the EHCP will be too. If the LA has watered down provision, make sure to request the LA sticks to the wording in the reports.

Then make sure any health or social care provision that educates or trains is in F. For example, LAs like to put therapies like SALT and OT in G (health care provision) when it belongs in F.

However, don’t get drawn into a prolonged back and forth with the LA that delays finalising. Push the LA to finalise and appeal. Ultimately, you may have to appeal and seek independent reports.

OP, this is absolutely invaluable advice. I was advised to do this over 20 years ago and it remains one of the best things I ever did. Print this message out and stick it at the front of the file that I am sure you have for all your sons paperwork

Blueblell · 24/03/2024 19:26

The Managers approach to you was not appropriate, but I would perhaps put that aside and ask to meet with her and hear her out. She may have some experience that is valuable, but I would bear in mind she is relatively new to his nursery so perhaps does not know him well enough to make this judgement.

He is bright and has empathy for situations which is positive. I think my instinct would be to start with mainstream but be prepared for an evolving situation.

RoadyMcRoadUser · 24/03/2024 19:49

I was really angry and upset when I wrote my initial post. I just couldn’t believe this bombshell got dropped at me, with not very kind wording, in front of my son and other parents who were milling about right next to me. It just felt like such a blow after having thought we had achieved something with the EHCP decision.
maybe she’s got a point, maybe she is wrong. I guess all I can do is make sure he has as much support in place as I possibly can, keep communicating with all parties, generally try not to fall apart myself in the process
thankyou so much to everyone who has taken the time to respond with advice x

OP posts:
AuntyMabelandPippin · 24/03/2024 21:44

IfItWereMe · 24/03/2024 18:51

Can I just say… I LOVE your Username- probably because my DC was introduced to “Come Outside” by his utterly wonderful SEN. Teacher ( over 20 years ago 🙈) and still watched the odd episode on YouTube 🤣

Thank you, I watched it with my DC when they were young. 😁

PinguLovesPippa · 25/03/2024 15:25

RoadyMcRoadUser · 24/03/2024 19:49

I was really angry and upset when I wrote my initial post. I just couldn’t believe this bombshell got dropped at me, with not very kind wording, in front of my son and other parents who were milling about right next to me. It just felt like such a blow after having thought we had achieved something with the EHCP decision.
maybe she’s got a point, maybe she is wrong. I guess all I can do is make sure he has as much support in place as I possibly can, keep communicating with all parties, generally try not to fall apart myself in the process
thankyou so much to everyone who has taken the time to respond with advice x

I think you wouldn’t be human if you didn’t fall apart at some point during all of this or if you didn’t get angry when professionals behave in a less than professional manner. It is not easy being a parent of a child who doesn’t fit in the round hole. Scour the internet, read books but most importantly do also see if you can find people in real life who are going through similar things to you. It really helps. There will be more opportunities for this when you get into the school system. Not necessarily support groups, if that doesn’t turn out to be your thing, but maybe other parents at the school or chatting to parents at events for children with additional needs. You learn a lot about local services and schools this way too!

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