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.

Special School. My daughter started (part days) at two and a half before going full time. She has very severe cognitive and physical disabilities.

In the early years, there were quite a lot of children with milder impairments and they got the benefit of on site physio, SLT and OT therapies alongside teaching in small class sizes from teachers experienced and trained in the king of differentiation and adaptation such diverse needs require. As DD progressed through the school these children gradually moved to mainstream school, presumably having made the progress that would enable them to cope. By 16 the children in DD’s class were all students with very profound needs.

The point being that Special School isn’t necessarily a one way journey, for many children it can be a very helpful stepping stone into mainstream education. For those that will never make that leap it is the best choice anyway. We were very lucky to have an excellent Special School in our postcode.

My friend who managed to get her severely autistic boy into special school in I think Y3 or 4 said that the difference was he was just being managed in mainstream. He was being baby sat but learning nothing. He was not integrated in any real sense he was just in the same place. He was safe with his 1:1 and not unhappy but she wanted better for him than that. The primary school were trying their best but with the best will in the world they were largely focused on the NT kids.

Once he went to the special school he made loads of progress because everything was focused towards the ways that he could learn.

My preference would be mainstream but I’d suggest posting on the SN boards rather than AIBU

Because there are so few special school places they may try to get you to agree to non special school, but how would it benefit your son to be in classes with children who are years older in developmental terms? I would push for a special school place from the start

How is he cognitively? You mention limited understanding and for me this would be the biggest red flag that he is unlikely to thrive in mainstream. Mobility doesn't have to be an issue, schools are very geared up to handle physical disability now, but if he is developmentally delayed he may not handle the high academic focus. Even in reception while its play based there's a lot of academic learning - maths concepts, reading and writing.

I absolutely agree with this.

Limited understanding in a social sense/developmental delays doesn’t mean that there’s a learning disability. My younger son needs one to one to guide him through the day, to keep a firm routine of when they’re sitting/eating/going to play. But his academic understanding is well beyond his peers and always has been. In fact, the further children like mine progress through school, the easier it becomes due to the ridged routine. ‘High academic focus’ really isn’t applicable to early years regardless, if a high needs child does need a placement there until an appropriate sen school is found it’s doesn’t mean that they’d be considerably behind their peers academically.

I am a teacher in a mainstream school and have taught several children with similar diagnoses and behaviours as your son.

In every case, parents regretted not seeking earlier specialist provision and were desperately trying to find a place by Year 3 or Year 4. In our area, places are very limited so they weren't prioritised for transfer until the end of Year 6. Every parent has since told me that their child is thriving at their new school.

You will be encouraged to consider mainstream because it is cheaper and they don't have enough special school places.

The Op,s child has been assessed aa being 15 months developmentally though which suggest, s there is,some global development delay, now I know some kids can and do catch up or make big strides in their development ,but some don't
In my LEA the child would be assessed by a panel to see if they are eligible for one of the special schools, if they are ,they would be placed in the one that best suits their needs ,although there can be quite a variation in the needs of the children that get a place but they all have significant learning disabilities.

He needs to be in a specialist school so he can get proper support. Ive taught kids who should really have been in special but parents insisted on mainstream, we don't have the knowledge, skills or time to support properly. I know teachers in special schools they are amazing and the ratios are so much better. Kids can really achieve and feel good about themselves

You are not being precious at all. Follow your instinct. You want the best and safest environment for your son.

Sorry it a bit random...but I also have hypermobility ehlers danlos and had something called occult tethered cord. They don't recognise this in adults in UK so I had to get diagnosis and surgery abroad. It can affect walking..causes delayed development...I wonder if your son could have it. Could you ask for a referral to great ormond Street and get an mri on his spine

You're not being precious and your position I would think seriously about a special school.

I worked in a school and had a lot to do with DC with EHCPs. IME, the more complex the diagnosis, the more likely the child was to move to a special school, but it could be hard to find a place.

My advice would be special school. From my experience ( I have taught in both types of school) in mainstream he would be an afterthought in planning every day to the teacher, and would be cared for by unqualified staff largely. "babysitting"

In a special school he would have a teacher planning every day with a small number of children with disabilities at the forefront of their mind, and the resources, and input he needs, as well as being on a par with his classmates