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.

You are not being precious, you are trying to do what is best for your little boy. When is he actually due to start reception?

He's due to start reception next September but we should have the EHCP this September.

We ended up doing it ourselves as you need to apply for mainstream and specialist schools around January time so wanted it in place before then.

My dc started a special school at 3 and in my opinion the earlier a child gets specialist intensive input the better their outcomes. DC is now 16 and I cannot express how great the school has been for him.
Visit schools and get a real feel for them.

You are not being precious, just advocating for the most precious thing in your life. Good luck 🤞

I'm not an expert at all but based on your description of your ds I am really struggling to see how he could attend a mainstream school.

And no you're not being precious at all

Sorry reading my post back that sounded incredibly blunt and unsympathetic....not the way it was intended at all.

I think you can consider and visit both types of schools but do not let the LA put you off if you think a special school would be best. We never know how SEND kids are going to develop but at the moment it sounds like your son will need considerable support at school. So this will be either an extensive support package in an mainstream school or special school.

Just to say, have you looked at SEN nurseries near you? We have one near us and the staff are amazing (my DS with ASD has interventions there and I know other children who attend). Your DS shouldn't be on a behavioural plan if the hitting is connected to his disabilities.

You are being asked not to rule it out as there aren’t enough spaces in specialist school.
Keep pushing for what you believe he needs.

Fwiw, all parents I know who have DC with sn have had to fight and argue for absolutely everything their child needs

My ASD Dd walked on her knees everywhere. She grew out of it eventually.

I know it's not what you asked but my boys used to walk around on their knees for about 6 months that was all they would do and were eventually diagnosed with hypermobile ankles. Have you tried fitting him with boots instead of the early walker soft shoes? Once they had boots my sons started walking on their feet which strengthened their ankles and then they didn't need boots.

Boots really helped my hypermobile DD too. Although they were reluctant to give until she was walking. But to answer your question my autistic DS is in a mainstream school with a specialist school attached to it. He really struggles in the mainstream classroom. Friends with similar need DC in specialist schools are thriving. Learning really is fast paced in mainstream. IME the authority push mainstream to save money. I'd continue with specialist if the option is available to you.

Mmm, my gut says that you should insist on special school from the start. from the sounds of things, it's unlikely he'll be fully mobile, or toilet trained by the time he starts, so you'd be setting him up for a very difficult start.

having said that, there is a boy in DS' year who has been with him throughout primary who had a much lower developmental age. He definitely was mobile and, I believe, toilet trained, when he started school though so that is different, but he has done well in mainstream school and is still in mainstream school with DS now in high school - they've never been BFFs but they have always had a friendly relationships and still do.

So I'd say be open, BUT don't let the LA fob you off because it's easier just to stick him in a mainstream school.

I have two ASD boys, Both are affected very differently. One goes to mainstream with extra TA support to help him concentrate etc the other has always been to Specialist.

It’s really hard to get a specialist place but (without sounding rude) it sounds like your son’s needs are high. It would absolutely push for a specialist place, particularly with GDD. My son has come on leaps and bounds. If you think that he would be able to cope in mainstream when he’s older it’s much easier to get a mainstream place at that point rather than swap from mainstream to specialist.

Mainstream always say that they’re inclusive etc but it’s always about which environment your child would thrive in. Good luck.

Oh and it’s likely that you will get refused for an ECHP as everyone does these days but always push for mediation/appeal.

Good luck.

Not precious at all and my advice would be to fight tooth and nail for the specialist place. You know your child best.

Thank you.

We did get a letter saying they think "Jack" (fake name) would benefit from a EHCP from the council and they asked all the relevant bodies to write reports - can it still be refused? Sorry new to all this.

Also thank you for the suggestion of the boots, I didn't think of that so will nip out tomorrow and buy him some.

Thank you everyone, I'll definitely fight for what's best for him!

I wouldn’t advocate for a mainstream school for a child that has a possibility of not walking when they start.

Not everyone gets a refusal to issue, but yes, some do. If that happens, you should appeal.

LAs and professionals involved with the LA will often try to steer parents to mainstream. It doesn’t mean that is actually what is suitable. If the LA issue an EHCP without naming your preferred specialist school, you can appeal.

it very much depends on MS, some are just not suitable /inclusive at all. I guess it’s not all primary school of the area you are looking at. It’s realistically: the local catchment primary, mainstream primaries with special units for his needs and specialist primaries so maybe 3-4 schools. I would go and have a look at all of them with open mind but from your description specialist school certainly sounds better.

Absolutely not being precious, you know your child best. Definitely visit both special and mainstream schools to see what provision they offer, but to me (as a paediatric physio with20 years working in SEN schools) I think a specialist provision would be better. If he makes fantastic progress with intensive early support you could look at transition to mainstream later if appropriate

I work in Early Years in a school that has a higher than average number of children with additional needs. There are a few who I honestly feel are not in the correct setting and are more being 'contained' than having their needs met. Go and look around the SN school and see what you think. Many mainstream schools have children spending a lot of the day in one small room as they have neither the staff nor resources to work with higher needs children.

Do you have any support from an occupational therapist? I too was thinking of a leg splint, but it would only be recommended if suitable and beneficial to get him up and walking.

You aren't being precious at all! Are they suggesting a full mainstream school, or a special needs class that happens to be within a mainstream school? I too would be pushing for a specialist school. He could always move to mainstream down the line if appropriate, but more difficult to move the other way.

My cousins son was very similar. Non-verbal, not walking, isolated etc. He also couldn't swallow properly, so was peg fed. He went to a specialist school and has really thrived. He is now 13. He can walk independently, the peg was removed a few years ago and he can verbilise better. When younger, he was taught makaton, which is a simplified form of sign language. They live abroad, so I don't know if its used in the UK, but worth asking about. Does he have SALT?
Makaton - Wikipedia
You are just trying to do the best for your son. My cousin has had to fight for everything unfortunately too.

You are quite right considering a special school. Good for you for admitting he most probably needs one rather than put him through misery and inflict his needs on a struggling system who simply won't be ablate meet them. You sound like you want the best for your lad, and that is commendable.

I'd say it's easier to start in a special school then move to mainstream if possible rather than start in mainstream and then try to find a place in a special school

You should push for what yoy fee suits your child's needs best
Honestly my son is 14 now and has been in a special school since reception his needs could never have been met in a mainstream school
He's very much included in his school
I was reluctant at first but in hindsight a special school has been the making of him.