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.

Her handling of it was extremely poor.

However, she may not be wrong.

Mainstream education is so much cheaper than special school, and is therefore, almost always, the first proposal. You generally need to fight to get a special school place named.

The wording on your child's EHCP, whilst nowhere near specific enough, also suggests a child who needs a very high level of support, who may become easily overwhelmed and for whom school is going to be very challenging.

Whilst Reception and year 1 may be appropriate, I think it's really important that you at least consider the fact that he may need a special school place in the future, to preserve his self esteem and support his changing needs.

I would strongly suggest that you visit a couple of special schools, plus a mainstream school with an autism base attached before you make a decision about schooling for September.

My dd has ADHD (not diagnosed until 15) and probably Autistic too (undiagnosed).

School was very tough for her, especially secondary school. However, thanks to medication, (and in spite of pretty shocking support at school in years 9, 10 and 11), she got fantastic GCSE and A level grades and is now at university living absolutely her best life, with wonderful friends who appreciate her for her true self.

Our children are capable of incredible things, but sadly, it takes an awful lot of fighting for, by us, against a system which is simply not fit for purpose.

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.

Thankyou @AuntyMabelandPippin it means alot to me right now to hear a positive story.
I know I have to be open minded and aware of the possibility he may need a reduced timetable initially,or he may need a different school at some point…. I’ve been so hellbent on making sure he has an EHCP that it’s been my main focus, and it’s depressing as I realise I’ve got to not be naive that gaining an EHCP is not the end of my fight for him.

You've done exactly the right thing for your child.

It is worth reading IPSEA and SOSSEN’s websites so you understand the EHCP process better.

What are the reports like? Are they detailed, specified and quantified or are they vague and woolly with wording such as “access to”, “would benefit from”, “regular”, “up to”, “or equivalent”, “opportunities for”, “as appropriate”, “would be useful/helpful”, “key adult(s)”, “such as”, “e.g.”, “etc.”, “as required”, “as advised”,“a high level”

Be careful with SENDIASS. Some are good, but too many repeat the LA’s unlawful policies.

You have done brilliantly to get him an EHCP before he starts school. What a fantastic advocate for your child. ❤️

You have done brilliantly. We all start knowing nothing, often get poor advice along the way, but end up knowing a lot more within a few years!

The EHCP as it stands does not sound water tight. It doesn’t sound specific enough. It doesn’t sound like it will get him much, if anything, more than what would ordinarily be provided anyway. This might be okay, but what happens if another child with significant needs comes along and the class TA has to help them too. The support your son gets then decreases but it looks like there is nothing in that EHCP that would help you as he would still have access to an adult. As mentioned above get it looked over by someone who actually knows what they are talking about before it is finalised, or if you are too late you can always appeal things later. I can assure you most teachers do not know much about EHCPs or SN law, most nursery managers do not and even some school SENCos know very little. Many will tell you things in good faith and be completely wrong about what the law actually is as they repeat what is being said to them by the LA which is trying to reduce its spending on SEND. Your nurser manager is doing the opposite but she still doesn’t have the ability to predict the future. She sees children when they are very small but probably does not see where they end up 5 years down the line.

You cannot know for certain how things will pan out. In some respects taking a breath and seeing how things unfold
may be your next step. Sometimes we are so focused on making the future okay for our children that we lose time in the here and now just enjoying them.

I have had a nursery manager tell me that there was no way my child was autistic, no way that they’d qualify for DLA as they weren’t disabled enough etc. That child got a diagnosis a few months later and, despite being academically able, got a place at special school before the end of KS1.

@Headfirstintothewild
there are a lot of the phrases you mention. So although on initial reading it sounds like he will be well supported it’s now almost sounding like a bit of a con tactic, which is sad and troubling.
presuming the services you have mentioned are overrun and can’t read his draft/get back to me with advice within the tight timeframe for me to make amendments - how would people suggest I ask for these things to be rephrased????? I have already asked for clarity on exactly how many hours each day he will be supported by an “assisting adult” and what category of support he is being allocated.

The plan is based on any reports that were written by whoever assessed him. If there is nothing concrete in any of these then whoever at the LA is putting together the final plan can’t put anything concrete in it. Go through any reports that you have and see if there is anything in them that would be helpful that hasn’t made its way into the final plan. Highlight these to the LA.

If there is nothing, or not much, then just get the final plan issued. Then you would need to go down the route of appealing it and getting private assessments done that hopefully will highlight more of the issues present.

The nursery manager handled it appallingly. They should have delivered you a shit sandwich in private while your son was occupied elsewhere.

Doing the best for your son’s future won’t necessarily mean doing what looks ‘normal’ such as a mainstream school. Special school sounds scary, but it is worth taking a look at what they can offer. My main concerns would be that a mainstream school would not have the ability or money to fulfil the EHCP. Also, that a specialist school would not give him opportunity to fulfil his academic potential.

If you are open to private schools, they often have a higher staff to student ratio, smaller classes and pupils are stretched academically. The right one would offer the best of both worlds.

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.

Excellent advice.

Look for anywhere that the word 'should' is used, and check whether the report from the professional said 'will'.

Eg.. ds 'should' have access to an appropriately trained adult throughout the day.

Becomes

Ds 'will'.....

I would then ask to have it quantified what level the adult should be trained to. Also, detail exactly where the adult will be. 'Have access to' means that the adult could be anywhere in the school and they have to go and fetch them if the adult is needed.

Also 'throughout the day' would need to be quantified to the number of hours.

It really depends on the school and their resources to help your child. My Oh is a retired Headteacher and advises parents of SEN children. One child had an EhCP which stated 1:1 provision, the reality was the adult assigned to him seemed to change almost termly as the job is full on and the pay low. It also turned out that this child was actually in the mainstream classroom for less than 15% of the day as he was isolated with this extra adult most of the time to enable the rest of the class to be taught. He did eventually get a place at a special school where he is progressing much more. The LA were adamant that the mainstream school was letting his needs when they obviously weren’t.

Meeting his needs

I have a daughter with autism and adhd.

She has loads of friends and always has - we used to joke you could drop her down in a random foreign country and she'd have twenty friends within an hour.

She has very good GCSEs. A levels were tricky but she did an access course and is now studying physics at uni.

There are lots of kids with autism and adhd who are successes.
Some of them have hiccups on the road but it is a marathon not a sprint,

Just by having an EHCP prior to school you are actually ahead of the game

Another question and I hope this doesn’t make me sound awful but to put it really bluntly - am I allowed to say to school re the key adult, I haven’t driven myself to the verge of a nervous breakdown to get my son an EHCP in place before school so that once I’ve achieved this he doesn’t end up getting the support that’s mentioned ie being
sidelined for any other kids with additional needs who haven’t been allocated any help? Does that make me sound like a
massive bitch?
I hate how that sounds and how I’m having to think. I honestly don’t want to be that person who “doesn’t want to share”, I am cringing just writing it. But I also haven’t fought so fucking hard at the expense of so much personally just so any help I manage to get him is snatched away

This is what I see time and time again. Join the children with Sen Facebook group in your area and you will see it.

Sorry to worry you, but few people will genuinely have the best interest of your child at heart.

Buckle up. Sounds like you’re doing a really good job. You will need to acquaint yourself with the laws and be prepared to fight.

I almost don’t have the heart to tell you how absolutely shit the provision for SEN is in our schools.

Hi Op, have you looked at the special school provision in your area? I’m asking because it varies massively from area to area but there are some brilliant special schools out there and it’s worth having a look, even if you don’t send him there right now at least you know what options you have. As pp have said, you often get steered towards mainstream by the LA as it’s cheaper, not because it’s the best place for the child and this can lead to massive problems later on.

An EHCP is good to have but for mainstream, what really matters is the attitude of the school and the experience they have of sen because you can have the greatest EHCP in the world but if your son’s issues are too extreme or if the school aren’t inclusive, then it’s a real hard slog.

Firstly, I agree with you and pp who said the nursery manager handled this dreadfully.
HOWEVER I'm afraid that as a parent to an SEN child you learn very quickly that the professionals who should be acting in the best interests of your child and advising you accordingly are far too constrained by budget considerations to do so.

I'm assuming your child has a school place already? Have you viewed it and spoken honestly to the Sendco about his needs? This would be the first thing to do.

Secondly, the wording as you describe it is definitely not specific and quantified enough. You have had excellent advice from a pp regarding this.

Thirdly, you do not sound like a bitch at all, but the points you raise are the reason why the ehcp needs to be so specific - otherwise yes, if another pupil needs support then the adult support may be shared.

Schools are so financially stretched that support staff may end up being used to cover staff absence, both in their usual class and others. Unless your child mentions it you are unlikely to be told.

You have done SO well to get an ehcp before starting school - think of this bit as the final hurdle- making sure it is quantified so that your child gets the support they need.

I echo the advice from another PP about checking out the special school provision in your area. From what you have described I would not be looking at SLD/MLD schools but at schools that support ASD needs. You should find a list on your local council's local offer website - google 'your local authority local offer.' Also Google your area and asd schools - one thing that in my experience the education department/professionals won't tell you is that where needed they will fund independent provision too.

Good luck OP, you're doing really well.

I have already met with the headteacher and SENCO at the school he will be going to and introduced myself/spoken a bit about his presentation and where we were at on the diagnostic pathway, and have shared any previous assessment reports with them so they are well aware of his needs on paper at least.
When I go to work tomorrow and have access to a printer I will print off the EHCP assessment recommendations versus what’s in the draft EHCP and as a PP mentioned go through them with highlighters to try and see what matches and what needs tighter wording.
What happens if they don’t get back to me? Or say no to any of the things I’ve requested are made clearer? Sorry if that’s a really novice question, I am a total EHCP novice here with no real idea what I’m doing 🤯

My dd presents similarly, she's six.
I think if he can cope in mainstream, he's best off there in the short term. There's very little in the way of specialist provision for young, verbal autistic children at that age. Most LA special schools have children with very complex needs and your son might struggle to get his social and academic needs met in one.
As they get older there is more choice. My daughter is in year one but hasn't coped at all with a mainstream classroom. She started at a specialist independent in the last few weeks but most were secondary or only accepted children from age 8/9.

It very much depends on the type of special schools your LA has. I've been a teacher in special schools for almost 40 years. Initially I taught in special schools that would be ideal for your son. Schools for children that had moderate learning difficulties and had the type of autism that your son appears to have (and possibly somewhat more severe, but still verbal). We could still stretch children who were actually bright but their autism prevented them learning in the normal environment.

However, the LA of my last school decided to no longer provide special education for that kind of child, and put them into mainstream, turning those schools into schools for children with much more severe learning difficulties.

LAs vary hugely in their provision, so check out yours first. If they provide for more able autistic children, then he would get much more informed and expert help (and probably find his friendship tribe) there. But if they only provide for the most severely learning disabled, then forget it and get your EHCP tightened up

If the LA finalise without making the amendments you requested, you can appeal.

If the provision is detailed, specified and quantified it can be enforced, but without it being detailed, specified and quantified it cannot be enforced and you cannot insist the school provide it. This is why is important the EHCP is watertight.