Am I being too precious about son with disabilities?

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Hello all,

My son is 3 - he has a diagnosed genetic disorder, GDD, Hypermobility and he's on the ASD pathway.

He can't walk, he's mobile and can "walk" on his knees, there's nothing physically wrong with him but the physiotherapist seems to think it's sensory and he'll just walk in his own time but the paediatrician seems to think he won't walk until he's at least 5.

He's non verbal and has limited understanding.

He cannot dress or undress himself, he's still in nappies and doesn't have the understand enough to potty train yet.

He really likes his own space and becomes distressed if anyone tries to come near him. He really prefers to be on his own.

Has eating difficulties in the sense prefers safe beige food but sometimes will refuse to eat all together and requires a lot of time.

He's on a behavioural report at nursery because he keeps hitting out.

He struggles with nosies, routine changes, lack of focus.

Sorry I don't want to go on and on - he's development age is 15 months.

We've had a meeting with the educational psychologist this morning as we're in the process of getting him an EHCP and we asked about the type of school he may go to and we said we'd prefer a specialist school but she said we should consider both so I'm looking into it and I was wondering does anyone have any experiences with a child like this in mainstream school and was I being a bit precious to rule it out?

It's hard and I genuinely don't know what to do.

He's only 3 and they can develop fast at this age, my dd went from non verbal to able to converse in complex sentences on an adult level in just months, she's autistic and just couldn't be pigeonholed it seems. She was mainstream educated as we fought for that having been concerned that her academic ability wouldn't be stretched in special education, the providers we were offered didn't have a good track record of GCSEs and a levels

everyone I know is getting rejected so work on that theory and just keep going - nice surprised if accepted.

So first of all they have to agree to have a Needs Assessment so all the professionals (Ed Psych, Speech and language, OT etc) all write reports. The council then decide whether they agree to have a EHCP then they have to agree to a placement.

It’s really good that you’re already starting this process.

My youngest was given his first EHCP at nursery but that was ten years ago and I fought for a place at specialist primary. He’s now thriving at secondary in a specialist unit in a mainstream where they stay in their own small classes with TA support and only have PE with mainstream.

It took me 15 months to get an EHCP for my eldest (legal timeframe is 20 weeks) because I kept having to go for mediation. I self referred for this too. Do not believe people if they say you won’t get an EHCP (wish I hadn’t for my eldest).

Please feel free to contact me by DM if you’d like to.

Also, please accept my apologies for all my typos!!! I really need to go and get new glasses!!!! 😂

I have two boys diagnosed with ASD and adhd. Younger one also is globally delayed and is around 2 years old (give or take a couple of months) in social and communication areas. Both attend different mainstreams. I won’t lie, I cried a lot when it came to putting the younger one in mainstream for many reasons. My eldest has had a shit time having his ASD recognised because he’s academically capable, the school continues to be surprised when he has ‘bad days’ (sensory overload or huge anxiety meaning he can’t take part in some lessons). My younger one also didn’t get his EHCP in place until reception. However, he goes to amazing school, and with great support is doing fantastic. Yes he’s still notably delayed compared to his peers, but he’s also part of the class not sidelined or ‘othered’.

Due to a huge lack of SEN school places, he still doesn’t quite reach the level of qualifying for a place (shocking considering his high needs) but it will be necessary as the gap between him and his peers grow. But not all mainstreams are awful for ASD children. I’ve been on both sides and honestly a good mainstream in the early years is a possibility.

I am just guessing, but would it be easier to move a child from a specialist school to a mainstream one, than vice versa? Purely because there are so few specialist places, so they are like gold dust, and if a parent wanted to free up a place by moving their child to mainstream, this would be useful for the LA?

If that is the case, and I had a child who I felt might benefit more from specialist school, I would fight to get them the specialist place, knowing that, if it proved beneficial for my child, I could move them to mainstream when/if they were ready.

If he very much wants his own space he will struggle at mainstream

I don't see how they could accommodate that or integrate him gradually

I haven't been in your shoes but I've worked in schools and they'd try their best but the funding won't be there either

Go and research special schools in your area.

EPs aren’t allowed / supposed to recommend a specific setting. They should clearly identify the full extent of need and outline the specific provision required to meet that need.

If you would prefer him to go to special school then the EP should report that in their assessment.

My best advice is to visit the schools in your area and see where you think he would be a better fit.

Think about what he will get out of it. If he has such a low development age, will he really get the type of education that he needs in a mainstream? You are ahead of the game in sorting out an ehcp now, so it is in place for starting school. Just remember that the local authority is on the side of saving money, not what is best for your son.

No you know your child best. In your shoes SEN school sounds a better fit but don't discount state schools as SEN places are very hard to come by. Good to hear you've been proactive re EHCP.

I would be discounting mainstream at this stage if I were you, the right school for your boy will help him SO much and while development can happen very quickly, I don’t believe with the best will in the world, that a non walking/talking/toileting 3 year old with the development of a 15m old could catch up to that of his peers within the next year.

All young children have SO much potential, and the right environment will really nurture and bring that out of your boy. If a switch to mainstream is the right move later on then that’s great too! But the right school at the right time is the main thing.

It's so sad to say, but in my area atleast, due to the limited spaces of specialist settings, children who obviously should be in one are having to go to mainstream as there's no other option. You are not being precious at all, I'm sorry you've even been made to question if you are.

It’s not ‘precious’ to want your DS to get the support which it’s quite reasonable to predict he’ll need. I don’t think it 100% requires ruling out mainstream school in the future if he shows he’s capable but as things are you need to protect him, which you are. Keep going and well done :)

Senco here. Two things stand out - why has Nursery got him on a ‘behavioural report’? What support have they put in place for him? What adjustments have they made? Why did they not apply for a needs assessment themselves?
The second thing I’d say is, if you came to see me at my mainstream school I would very much guide you towards special school. We would likely be able to support your DS well in Reception, possibly in Y1, but as he moves through school it would be trickier for him to receive the education that he needs. What many parents don’t realise is that it is far far easier for a child with such additional needs to get a place in a specialist provision for Reception, then again for Year 7. We currently have 4 children who sound very similar to your DC. All are INAs and started during Reception year or Y1. No previous schooling. The LA knows all really need specialist provision but as an in year transfer they don’t stand a cat in hell’s chance. We’ve had them for 3 years now. We cope, they cope but if I’m honest they deserve so much more.
The time to fight for the right school for your boy is now.

I am a teacher in a mainstream school and we honestly could not meet your child’s needs. Specialist schools are wonderful places and he will have tailored support specific to his needs. Trust your gut. I think they always advise to consider mainstream but in your son’s case I don’t think this would be a suitable option for him. I believe mainstream may have a detrimental impact on his development (the sensory noise, children without special awareness, the lack of specific resources and building awareness e.gz lighting).
I would also echo poster above who questions the behaviour report vs nursery meeting his needs.

From your description of your son, I would not even consider mainstream. I have been in education (Early Years) for 22+ years.

The combination of his physical, sensory and social communication issues would mean that mainstream education would likely cause him great distress. I can't see how his needs could be met in a way which would not isolate him from his peers and/or overwhelm him.

Push for specialist provision from the outset. You can review this in a few years. However, it's so much harder to start in mainstream and then get a place in specialist provision later.

As an adult with EDS I say this as a blanket statement that I think the whole world has gone a bit mad about hypermobility.

OP you understandably want the best for your DC but very gently EDS and ASD are both conditions you can have and live a totally normal, productive, successful life with. But absolutely if your child will thrive in a specialist setting seek that for them.

With the exception of the behavioural plan, you could be describing my son. His EHCP was turned down because they blanket rule (which they shouldn't have) was at least two years behind and failing in an academic setting. Everybody had written in their reports "requires EHCP" but were ignored. Our solution was to delay his start to school (he's summer born) so he started a year later. Best. Ever. Choice. Then we applied for an EHCP again and it was successful.

DS is now a sport mad (although not competent remotely, bless him) nearly 11 year old who has had so many interventions and specialsts involved - paeds in his life since 9 months old, and basically on their books ever since. Still waiting for ASD assessment as they kept sending to various other people eg Speech and Language in case that would help, which took him off the waiting list each time.

By the time he started mainstream school a year later than usual, he could just about walk (lots of tumbles though), speak very short phrases and was just about out of nappies (lots of spare clothes necessary though.) He is now about to go in Y6 and is holding his own - quirky, hyper-focused on special interests and goes on and on about those (I could now list every Archbishop of Canterbury, and know that we must turn football games on early in order to find out the refs and officials, else we have a very upset boy.) He doesn't really have friends but is accepted by his peers and seems happy.

We were warned at around your child's age that there was no way of knowing how ds would progress- could have remained non-mobile, non-verbal and in nappies. Or turn out as he did.

So fight for your son but don't necessarily dismiss mainstream.

Special school places are rare than hens' teeth. If you can get one, grab with both hands and don't let go until you see if he no longer needs it. The LA will definitely try to get you to go mainstream, but it might not be completely unsuitable by the time he gets to it.

The LA pushes everyone towards mainstream as it’s ‘inclusive’ -

bollocks is it inclusive - they do it as it is CHEAP

your child has high needs - get them in a specialist school and get those needs supported.

should they make amazing progress and suddenly mainstream be an option - it will be easy enough to transfer back into a mainstream school.

but once they are in mainstream - they will mess about - make a lot of promises - babysit rather than teach him and he won’t be being ‘included’ he will be there but not getting the education he needs.

mine both limped through mainstream for infants, - one went to specialist for juniors to end of school - the other renss as Uber in mainstream until seniors then went to specialist school.

bith we’re failed by mainstream as the system is not set up to cope with high level needs children. One of mine was 1:1 all day including breaks etc and still was not enough to TEACH them in mainstream school. It contained them and kept them snd everyone around them safe - but it wasn’t the precision teaching they needed for their level if need.

you are not being precious - you are being realistic. if I could do my time again I would have got mine into specialist schools from day 1 .

please don’t be swayed by the LA - I am an old hand at this now and can see their major interest is always budget driven - that isn’t your concern… your concern is getting the right education for your son.

our school places cost the la a fortune - could have sent 6 kids to Eton for what it cost to educate my 2 in specialist schools per year. (1 residential, 1 day) Not exaggerating - that is the truth. but they were the right places that actually met my child’s needs. Don’t settle for 2nd best and don’t fall for ‘let’s try them in mainstream’ .

not bring harsh but I say this as a mum of 2 disabled kids. Our kids are different . They are not going to ‘fit in’ in mainstream. No matter how kind, how PC, how disability aware, asd friendly a mainstream school claim to be - they don’t have the money, resources, staffing nor specialism to deal with complex needs children.

get them into specialist school and watch them thrive.

Also just to say - people think ‘special schools’ means low attainment.

but it doesn’t - both mine left with GCSE’s and vocationall qualifications - never in a million years did I think that gcse was a possibility when they were failing and learning nothing in Mainstream - as totally unsuitable environment .

But once mine were getting the specialist provision and teaching so they could learn - they did learn and did great !

so never let people convince you that special school is 2nd best or = low achievement / attainment and taking away chances in life.

the right specialist school opens up their chances and they are far more likely to succeed in a school that understands their learning needs / sensory issues etc.

some in my eldest child’s specialist school even did A levels - one lad (with ASD) went on to uni - because they were being taught in a way that suited them.

Both conditions are also on a huge spectrum and vary massively in how they impact a person.

That's not necessarily true and very much area dependent, in my LEA we have two special needs primary schools, one for children with moderate to severe learning disabilities and autism, and the other for children with severe to profound learning disabilities and autism
We also have two special needs high schools,
Again one for children with moderate to severe learning disabilities and autism
And the second for children with severe to profound learning disabilities and autism

We also have two autism hubs ( primary )
And two Autism hubs ( secondary)
All four special schools have doubled in capacity in recent years.

I knew at age 3 my daughter needed a special school placement. The educational psychologist told me that my only option was to ‘let mainstream education fail first’ and only then will a specialist school be considered.

She’s now 6. The last three years have been the mainstream school requesting the local authority move her as the school is unsuitable to her needs. No shit! She’s still in nappies, non verbal and has no understanding of danger/cause and effect! They’ve had to install locks on her classroom doors to keep her from roaming the school!

Anyway, I got a call yesterday to say that she’s finally been given a place at a STF unit and I’m so happy! If I could go back in time to that first meeting three years ago I would have pushed, appealed and fought for her to be in a unit from the start. It haunts me knowing the progress that likely has been lost due to her spending the last three years in an environment completely unsuitable to her.

Insist on special. They are bursting at the seams and it is much easier to get in at the beginning. Also if he is already having behavioural issues these are likely to get worse in mainstream as they just do not have the skills or environment to manage this appropriately.

One thing I learnt early on was you make the best decision you can at the time with the info you have at the time and you always trust your own feelings. It’s a constant battle, you most certainly aren’t being precious. You are fighting for your child. The fighting doesn’t stop so look after yourself so you can keep fighting for your boy.

I have a friend who REALLY regrets not doing a specialist school from the start. She is now trying to transfer from mainstream because they just aren't equipped to help him... but because he has been there for 4 years of schooling no one is taking her seriously (school are trying to push her out but deny this).

Everything I have observed gives me the opinion that it's better to start out specialist and move to mainstream if you decide later on, than the other way around.