Special Educational Needs Register

[Charlieandthechocolatecake]

My gorgeous 7 year old who has the most perfect manners and is a steam train expert has just been put on the SEN register.

He has had problems at his school since he started in January last year year due to bullying.

Now he is on the SEND register. I don't know what my AIBU is. Sorry.

I don't even know why I mentioned bloody steam trains. The school have advised me that I need to pay for an autism test. Does the NHS not cover that? We can afford it but why doesn't the NHS cover that?

I love him, he's so lovely. I'm so sad.

Your DS sounds very similar to mine at that age (he's 22 now) except his specialist subject was dinosaurs. We were fortunate that waiting times for assessments were much shorter then and he was diagnosed aged 6 although issues had been highlighted by his private nursery when he was 3.

If it gives you any glimmer of hope, I can tell you that in spite of needing lots of support throughout his school life, my DS has managed to leave home and go to Uni 3 hrs away and manage indepedently in a flat and house share with complete strangers. He has held down gap year and summer jobs - and is no longer really interested in dinosaurs - although in my voluntary role with children I am still able to impress with my knowledge!

@IceCreamAndCandyfloss 😂😂 good lord! Not sure which part of the National Curriculum you're looking at, but in my 28 years as a primary school teacher (Early Years specialist!) reception and year 1 children have NEVER had to learn their times tables! Reception children are expected to be able to count to 20, Year 1s are expected to 'count in steps of 2, 5 and 10'...they don't start learning times tables, 2x, 5x and 10x, until Year 2!

But feel free to continue dishing out unsubstantiated bad advice!

OP...your son needs you now to fight his corner. Schools are SO short of funding (not their fault!) and SO short of staff (not their fault!). It will be require a lot of mountain climbing from you.

So...Please...take off your rose-tinted glasses (yes, your son is wonderful and special, this will NEVER change), stop grieving (I truly understand how hard this is, I went through similar) and focus on what needs to happen from this point forward. Focus on what IS actually happening. See your son how others see him (this is actually important, because as parents, we are often quite blind)...and then ask yourself, how can we support him now? If this sounds tough, I'm sorry, it's not meant to be...but you're his advocate and you are the one who needs to step up now. You can do this 💖

It sounds like you are a very good Mum actually and that this has come as a massive shock to you. Deep breaths and research is my advice. The website below may help you understand the referral and assessment process in your area, good luck!

www.kent.gov.uk/social-care-and-health/care-and-support/disability/learning-disability/autism/getting-an-autism-diagnosis/autism-diagnosis-for-children#null

Hi OP,
PPs have given you lots of great ideas and advice.
Autistic children are often different at school to how they are at home. Took us a while to realise that with our now 6yo when nursery told us he was v different there (at 2yo). School environment can be hugely overwhelming and stressful & sounds like your poor DS has been struggling with it. Also sounds like you are doing a brilliant job at home, encouraging his interests (which will really help him to relax), giving him a routine that helps him feel safe and helping him learn.
I've found lots of brilliant advice and insights from autistic adults on Twitter. If you look up Ann Memmott, Pete Wharmby and Chris Bonnello, for example, they often tweet and blog about their experiences as autistic people, sensory differences, anxiety etc - has been a massive eye opener for us. Would suggest starting with Pete's blog as he's done some recent relevant posts:
Petewharmby.blogspot.co.uk

Remember that your wonderful boy is still exactly who he always was, though it may take you a while to adjust your expectations for the future.

Another who says do not take it as 'fact' what any poster is putting on here about their diagnostic route.
It is very, very different in each authority. For example, autism diagnosis is nothing to do with CAMHS here, even though it is in many authorities. Schools can refer her, unlike in some other authorities.

What you really need to do is firm up the appointment with the SENCo, and ask what happens there. The link to Kent's page is good, but what it says ought to happen on an official page is always an optimistic version of real life, IME.
The other thing to do is look at the National Autistic Society website and maybe call their helpline. It is more than likely there will be local groups and trainings and support and advice within your own area. Then you will be talking to parents, and to support staff who know the systems in your area.

It is perfectly possible he won't need an EHCP - not everyone with Autism does. Not everyone with special needs does. It sounds like your school are already making adjustments and putting things in place, but it sounds like they need further advice, and your ds needs further support about how he deals with becoming overwhelmed. So he might.

A others have said, he is still the same lovely boy he was yesterday and will still be the same boy in a year's time. If he is on the spectrum then getting a diagnosis sometimes makes getting that extra help easier.

I'd get the ball rolling for an ehcp assessment asap. Bare in mind a lot get refuses but 80% of appeals end up getting the assessment anyway. My youngest son is in year 1 was put on Sen register last year. He made zero progress in reception so I've put the application in for an ehcp myself, you can do this and can find the info online. Your local la deal with it. The school is supporting my application so I imagine the school would support you to.

It really does depend on the child. My child can be handled within school fine with the adjustments they've made for her - she doesnt need an echp.

It is totally appalling that families are being let down by having to wait for months & months for autism (and other) assessments. You could hold your ground and spend these months complaining about the wait. Or you could pay for the assessment and be grateful that you can afford it & start to deal with the issues that the diagnosis presents as soon as possible. Its completely wrong & unfair on those families that can't afford it but I know what I would do.
With regards to the work you do with your son at home I don't think you should change for the moment if he enjoys it. As for the differences in his behaviour & the lack of "melt downs" do you think this could just be down to the different environment & routines. You should take some credit for the relationship that you have developed with your son and the fact that he feels happy & relaxed when at home. He sounds like a lovely little boy - as others have said please don't write his future off. There are very many adults with ASD who are high achieving and live perfectly "normal" lives if ever there is one!

Your ds sounds lovely op and I'm sorry you're struggling.

You absolutely don't have to pay for an autism assessment! Although depending on whereabouts you are, there might be a long wait. It's two years in my area.

A diagnosis shouldn't make any difference to the support you receive from school. Support should be based on need and not on diagnosis. Please persist in getting an appointment with the SENCo to ask what that intend to do to support ds going forward.

I genuinely didn't realise that it was different for all areas. That makes it so much harder and confusing if the family choose to move away from the area. So sorry OP my post was well intentioned on the basis of what I have experienced so far.

I also hadn't realised just how long the waiting is. I've seen a diagnoses be made within a couple of months. But then again, I don't know if the parents chose to go the private route. I think I may consider going private myself depending on the outcome of this first meeting. The waiting is the hardest

Firstly can I say what a wonderful son you have and also what wonderful mother you are your doing an amazing job in how your supporting him.

No you shouldn’t have to fund his assessment for Autism, but from what I understand if he was to be assessed via the nhs it can be a long wait.
I would think if you paid privately for an assessment it would be done a lot quicker which would ultimately benefit him having it done sooner rather than later.

My ds is 19 now and was assessed at nursery by an education psychologist who spent time observing him and playing with him, after her assessment she talked with me about her findings and that in her opinion he was on the spectrum, my heart sank when I heard autism and struggled to take in what else she said but she was just confirming what I already knew in my heart.

Your son sounds as if he is more higher functioning than my son who is much more severe and still non verbal which is why after a few years at mainstream school we managed to get a wonderful placement at complex needs school which he left in July after many happy years there.

It sounds as if your son is getting very anxious which is why he lashes out at school but not at home where it is a calm safe place for him.
Its good that his school have provided additional support for him and its vital that he is told what is going to happen in advance with activities or lessons to minimise his stress levels.

I understand your sadness and I remember going through a grieving process and was very sad at times and I still do sometimes but you know what as long as my son is happy and healthy thats whats most important to us.

@FlyingBanana I understand what you mean. However, we feel as though DS is more prepared for the day in school if he gets extra preparation at home. If he is being taught something outside of his knowledge he fly's if the handle. Kicks chairs, leaves the classroom etc. I GENUINELY feel as though our home routine supports him so as to avoid these events.

That said, it's only half an hour from Monday to Thursday. After that he has time to do whatever he wishes which is usually playing with his Hornby sets (bloody expensive!) and watching Hornby/ steam train related videos on YouTube. He gets plenty of downtime after school and at the weekends.

It's funny you mentioned rollercoaster videos, I spent 2 hours this morning watching them on YouTube with my boys!

I have to be around when their on YouTube as my boy always types in Trans instead of Trains and whilst I am very liberal, I'd prefer to have this conversation in a few years!

@cheeseandbiscuitss Thank you! I've had a questionnaire from the school which I've sent back. The first questions were social related which I ticked none of. The second page was executive decision making which I ticked all of but one.

@VolcanionSteamArtillery that was harsh. However, I'm reluctantly agreeing with you. My baby deserves better.

What happens if i change his school? Will social services become involved? I can only imagine the school he's at would think I'm reluctant to follow their 'path'.

For what it's worth I'm a people pleaser and i don't think that has helped the situation. My DP, DS's dad has emailed the school threatening to involve the police due to the previous bullying.

We have previously considered putting DS in the local private school. We can afford it (If I sacrifice chocolate and a couple of other necessities) but would that make a difference?

Was I wrong?

Hi op you don't have to pay for an asd assessment however usually schools get allocated so many hours per year with an educational psychologist. They then have to prioritise which children get seen and have a waiting list.
In one school I taught in - a small country school - the psychologist hours we received would have seen about 3 children. We had a waiting list of over 10.
The other way of a referral is through gp or alternatively going private.
Please be careful if you go down the private route to ensure that any diagnosis given would be recognised by the education board (local authority?) as if it isn't the school don't receive the extra funds they require to implement the needed support for your ds.
(I am in UK but not England so may be different where I am)