Please help! Advice really needed!

[RoadyMcRoadUser]

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.

Also sorry another question - are the mainstream primary I’m sending him to more likely to go by the EHCP recommendations and their own observations and assessments or by what the gobby nursery manager says?

It sounds like you are in a very difficult place.

I am not an expert and cannot advise what is best for your son.

What I can say is that for children like your son who show academic ability while having significant needs in other areas it can be a hard decision which type of schooling is best.

Special schools meet the significant needs in emotional and social areas. They find it harder to meet the academic needs. So parents of children like your son who go to special school often worry they have sacrificed their academic development to their social and emotional needs.

Mainstream primary schools meet the academic needs but find it harder to meet the social and emotional needs. So parents of children like your son who go to mainstream primary often worry about their child being left out of the class socially and being seen as "naughty".

There is a sense in which she is right in that local authorities do not have much money these days and so they tend to recommend that children with needs start in mainstream. It is cheaper. If the child is reasonably successful then that's great.

Some children like your son start in mainstream and don't cope emotionally. They can then go down a path of exclusions, reacting to other children with meltdowns and violence etc which leads to them dropping out of education.

The mainstream primary will not pay any attention to the gobby nursery manager.

You can ask to have her not involved in the transition but I'm not sure whether they have to comply.

With respect to the EHCP, the primary will make best efforts to implement it. How watertight is the language that you have in it?

For example, does it state your child must have 1:1 at all times or does it just state he would benefit from it?

It does not use the term 1:1 but says as an example he needs “adult support throughout the day” by an adult trained in ASD/ADHD support and mentions specific things such as in the class, at lunchtime and playtime, daily intervention groups to practice social stories and turn taking” , as one example of what’s been recommended

“A personalised learning routine in which he is supported by a skilled adult”

“He will be assigned a key adult who he is able to build a close relationship with”

My son sounds very similar to yours at that age, he was very bright but struggled with communication. He had an EHCP issued in Reception class at mainstream and due to class size of over 30 we decided to move him to another mainstream with class sizes of 15, he coped for Y1 but struggled as the work load increased in Y2.

He moved to a special primary and came on amazingly well. He is now 18 and at mainstream college, is like a walking encyclopedia and sometimes I wish he would stop talking.

If he's struggling the school will discuss with you and will also talk to the Local Authority if he needs more support and changes to the EHCP. Getting into a special school can be tricky due to limited primary placements. For 4 years at primary my son travelled 80 miles a day, his taxi driver did 160 miles a day.

He sounds highly intelligent in many ways. I didn't know 25x3 until I got a tutor for the 11 plus, lol.
I'd say you should go with what you feel is right. The mainstream school would be what the EHCP suggests, so you can just explain to the nursery manager the decision making process you went through and it's going to mainstream. Once you pose the reasons to her I don't think she can block you or try and stop you can she?
If he can't get on at mainstream surely he can switch to special? It sounds like academically mainstream would be more enriching and challenging in a good way.

Well special schools are expensive so the LA will take the cheaper option.

Personally I think there should be a quieter academic setting for bright children with ASD - and as they seem to have a mass of intellect and memory - imagine the world with them in our science and engineering sectors?

I have looked after children in mainstream and there have been days of not weeks where I’ve felt that it’s cruel to put them in a large classroom with so many daily traditions and changes - like expecting PR when we have school photo day - it really unsettled them.

Then they end up medicated rather than give them the structure and quiet they really need.

The nursery manager isn’t wrong - but it depends on how well the mainstream setting deals with you child and if the TA does in fact have knowledge of these types of children. A lot don’t.

And the PP who suggested the get labels as ‘naughty’ is right - then some staff member shouts at them and it all escalates. Then they distrust people! Wonder why?

You have done brilliantly in securing the EHCP for your son and it will help so much for his future. The PP poster sums up the difficulty in placing children like your son, bright but with significant needs surrounding their personal and social development.

One caveat with the phrases in the EHCP about the 1-1. An adult trained in ASD and ADHD may not be available and often special support assistants start their jobs without these skills, learning on the job. He may have an SSA who has worked with other children with these needs in the past but he may not. Recruitment and retention of support staff is really hard in schools. It's not to say his support assistant won't be great but the experience may not be there initially.

You could also look into ARPs, where a child spends part of the day in the ARP (a special unit within the mainstream school) and part of the day in the mainstream classroom.

It would be a good idea to get the EHCP looked over by someone specialising in Sen who knows what they are looking at.

Try sossen.org.uk

You have done incredibly well to get an EHCP out of them it is often a real battle.

Does he have a primary school named on the EHCP or are you at the stage of looking?

Some primaries are more SEN friendly than others.

I think to an extent she’s probably right, especially in that she may appreciate what the reality of mainstream looks like for your child whereas the LA will encourage whatever is cheapest for them- which is mainstream.

My godson is very similar to your son and started off in mainstream, his EHCP had almost identical language with regards to a key adult to build relationship with, personalised learning routine etc and his primary absolutely tried their very best to implement these things as much as possible but the reality is the funding just isn’t there and so “key adult” became pretty much any adult, and that adult was responsible for assisting more than one child.

There’s also the reality of mainstream school even with support which often means that children like your son and my godson end up quite ostracised and are just labelled “trouble makers” for things like poor communication, overly emotional in class, meltdowns when triggered, hyperactivity etc. My godson ended up with no friends at all because everybody just thought he was weird, he was constantly being sent out of lessons for being “naughty”, he ended up trying to really mask as best he could at school which just led to meltdowns as soon as he got home and he was then starting to refuse school attendance altogether. The reality is that mainstream schools just don’t have the funding, the staff or the capacity to provide properly for these children.

My godson moved to a special school at 7 and has come on leaps and bounds as he is now surrounded by people who can & will support him.

For example, when I worked in a primary we had a boy come into reception who clearly had significant difficulties emotionally.

School immediately applied for emergency funding which was given. The class had a TA (very experienced) in there in the mornings who effectively became his 1:1 in the mornings. They asked for volunteers for the afternoons and people signed up. (A lot of the TAs were on morning only contracts).

They kicked off an EHCP application and got him observed by all the right people.

That then unlocked funding, and they were able to recruit a 1:1 who could be with him all the time.

This was supportive primary.

An unsupportive primary would have:

Possibly suspended him for each violent incident (=meltdown)
Put him on a part time timetable (because he's not coping) this is illegal but can be hard to challenge as he is not coping

It cost my school a lot of money to support this child, a lot of which they did not get back.

So I would say it's important to have a supportive primary.

Don’t have advice but wanted to offer sympathy for how you felt about the timing and place where the manager raised these points with you. I wouldn’t have liked it either.

have heard the same conundrum the first post mentions from a colleague whose son has ASD, she found a primary that is very SEN-minded and her son has great support but she is concerned about the same catch 22.

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.

I think your reaction is very strong because of how it was handled by this manager, out of the blue and giving you (rightly or wrongly) the 'vibe' that your son is thought of negatively. After the initial strong reaction, I'd try to not let that cloud what she's saying, which as others said may have some weight. Of course you're consumed with worries over your DS's future and want to do the right thing, and no one here - or there - can tell you what that is precisely.

Mainstream may work out for him or as with PPs' children, he may be better suited to a smaller school or ultimately a special school. Special schools can be great, it's not a terrible thing for the manager to have suggested. She may have done so clumsily and as you say, she's not read his EHCP, but I think it may be an over-reaction to be angry at her to the extent you'd have taken him away if it'd happened earlier and want to cut her out of his transition etc. Perhaps you're right and she is wrong, but unless you think she has malign reasons, it would seem she's concerned and wants the right thing for your DS, just has a different opinion on what that is and over-stated it poorly.

Given the parlous state of school funding, lack of teachers, and the fact the EHCP doesn't specify a 1:1 for your DS, you may find yourself fighting for him to get the support he needs in mainstream for many years, so save some energy for that and try to minimise the impact of this manager's comments if you can. You've committed to trying mainstream and it may work out for the best. All you can do is wait and see how he copes and how he develops, which will be different to any other child and impossible to predict at this point. To balance all those saying mainstream is fine, you've now got this other voice in your head saying he might do better in special school, so you can tune that down for now but keep it in mind for if things don't work out. For your own well-being, please try to take it in that spirit rather than as an attack on your DS or something to pre-occupy your thoughts and blight his last term there. Perhaps have a read on the SEN boards if you haven't already - it can be a long road and building up a thicker skin will come in handy.

I’m just so drained and upset and frightened for him and his future. I thought we had scored a real victory with the EHCP agreement and 2mins later felt totally deflated with this revelation opinion by the nursery manager. and yes to PP, I was really upset that she spoke about all of this in front of my son and random other parents. It’s made me question if she feels it’s appropriate to make the sort of statements she was in front of him, what else does she say about him in front of him?
I am so scared for what his life will be like.

Are you able to get help for yourself or time out to take your mind of all of this? You sound in a terrible state where everything is heightened. You can't do anything about the rest of your DS's life now and catastrophising is the worst. You're doing what you can for now and don't let her ill-chosen conversation knock you so much if at all possible.

Because of the SEN crisis in this country, many students are being put in mainstream, because it’s cheaper. Also, if your son was assessed by an Ed Psych provided by the LA, remember who pays their wages and query if the report was written with your sons best interests in mind or to save the LA some money.

Single working mum with another son so no chance of a break.

Yes. I've been where you are. It's a process so it will constantly change. Do worry too much about the permanence of your immediate decisions.

He's still young. And he's bright.

Personally I'd try mainstream with 1:1 if stated in his plan and see how he gets on.

Monitor it closely, especially friendships and play, as he may need to consider specialist settings later.

Mainstream primary have to be able to meet the EHCP to accept him.

It's a bumpy journey, join some good Facebook support groups and find the mums who have been through this.

I have four. Eldest is autistic & did mainstream and struggled a socially until secondary where he coped better. Struggled with uni but did well.

Second is adhd and at uni, was also mainstream.

Third is autistic in specialist school.

Fourth is adhd and finding their educational path in different ways. I think we're finally in the right direction.

It will be ok. Make sure you always look after your mental health. You can't pour from an empty vessel.

Thankyou everyone for your replies. If I’m being honest I never hear anything positively anecdotally about kids with ASD/ADHD (this may be because I don’t know any other than my little boy so going by what I read online basically) and it all seems to be tales of struggling through school, few friendships if any, poor mental health….I’m just drained and frightened for him.

I'm from a different part of the country so we still have statements. We have to fight for the hours and ratio of support t be written in so document is legally binding as its often wooly

I absolutely agree with you. This is an EHCP which means very, very little in practical terms. There is little that is quantifiable and concrete. It's an EGCP which gives the school far too much 'wriggle-room' and means that the child is likely to left without adequate or appropriate support.

If I was the OP, I would be taking it to SENDIASS or SOSSEN to ask for their input, urgently, before it's finalised.