Can nonverbal kids go to mainstream school?

[PeachPearPlum7]

I can't work out if my DD will be able to attend mainstream school.

My 2.5 year old DD has really severely delayed speech due to a brain injury from an underlying condition. She says no words at all and can only make three sounds (SSS, ah, ooo). Her hearing is perfect (tested twice in last six months). She has other related issues Iike hypotonia (floppiness) and dystonia in her hands and arms (making signing difficult). The speech delay is most likely due to her hypotonia and dystonia (i.e. her muscles don't predictably do what they're told) - learning to eat has been a long difficult journey. But she's bright and super social so apart from these physical disabilities is doing really well.

If she still isn't speaking at all by primary school age, can I/should I send her to a mainstream school?

She has an EHCP and her NHS speech therapist is getting her on the wait list for an AAC (iPad that will speak for her through special buttons). I'm trying to teach her and myself British sign language so she can communicate better but I've found it really hard to bring nursery with me on that journey. She's there four days a week and they're open and interested in helping her. But I don't think they spend much time trying to figure out what she's signing to them (which to be fair is very difficult, her dystonia makes her signs v hard to understand), and I don't thinking they sign back to help her feel understood.

I feel like school might end up being similar to nursery? I just can't imagine teachers having time to learn her signs. And how miserable will it be for her as she gets older if she's spending so much time in an environment where she can't make herself understood. At nursery she has dedicated one to ones (a small team rotate this position) and at school it will just be a teacher and some teaching assistants. Right now I just can't imagine it working.

Has anyone had experience of their kids starting school without being able to speak? Especially interested if that was due to physical disabilities. How did your children cope ?

I think you're asking the wrong question.

The chances are the LA will try to make you try a mainstream, so you need to be getting the EHCP fit for purpose so she can have the 1-1 and other support she needs there. Have you looked at what special schools you could reasonably get to? When's your next annual review for the EHCP?

Are there any parents' groups for disabled DC for your area? Where do their DC go?

It really depends on the individual needs of the pupil and what schools you have available. Some non-verbal DC do attend mainstream schools, especially in lower primary. Some attend MS because it is the best place for them, but others attend despite it not being brilliant for them because there isn’t anything more suitable.

Given your post, I would be seriously looking at what SS are within travelling distance. Don’t forget to look at out of area, NMSS and independent SS, too. Also look at any ARPs.

You don’t have to name MS as parental preference even if the LA say you have to. When the time comes, if the LA doesn’t name your preferred school, you should appeal.

Is AAC not in DD’s EHCP? Same for the signing?

At nursery she has dedicated one to ones (a small team rotate this position) and at school it will just be a teacher and some teaching assistants.

If DD needs 1:1, then it can still be provided at school, whether that is MS, SS or ARP. A 1:1 would be a necessity in MS, IMO.

@Phineyj thank you for answering. To be honest I haven't looked for special schools. My hope is by teenage years she'll have caught up enough to thrive in mainstream - but this might be hubris. She doesn't seem to have learning or behavioural disabilities, it's all just physical disabilities (I see her being nonverbal as a physical disability because the cause is her inability to control her muscles including fine control of her breath etc vital for speech).

I suppose my worry is that once in a special needs school she'll be with other children that will have a huge range of learning and behavioural needs (as well as physical disabilities like her) and that not being with a peer group of "able" kids might limit her potential. I have an ongoing worry that health and education professionals lower their expectations (and their effort) as soon as they hear about disabilities and complex medical needs - in fact I've witnessed this many many times already, and so is that magnified in a setting that's exclusively for children with special needs? I hope this comes across in the right way, and I know it will reveal my ignorance of these schools, but how many kids from special schools go on to uni? Or to successful professional lives? I realise that may be out of reach for DD, but right now that's not a given and I don't want the choice of schools to narrow her opportunities.

I realise I might be about to be told that actually these special schools tend to be great and only open doors rather than shut them - in fact I hope I am wrong and that is the case.

I think it's way way too early to be thinking about secondary, never mind university!

And I say that as a massive overplanner.

Focus on getting primary right.

^This. It is easy to get carried away, but that is a long way away. The decision you make for reception doesn’t mean DD can’t move at a later date. Some DC who attend SS do go on to university, though.

is that magnified in a setting that's exclusively for children with special needs?

It is a poor school that allows that to happen, IMO, but yes, it does sometimes happen.

@Headfirstintothewild thanks v much for the reply. I will be looking into special schools after seeing replies to my post but haven't yet

Signing and AAC aren't in the EHCP yet (review in a few weeks where I hope they'll be added). I've had pretty lackluster help from SALT so far. For a long time they wouldn't discuss speech at all even though it's been clear from the start DD was behind and her brain injury would make it challenging. She was on a feeding tube until 18 months so interaction up to that point would only focus on whether or not she had a safe swallow (it wasn't perfect but she did)- they wouldn't even offer advice on weaning off the tube which is what I actually was asking for. Then once off the tube they'd just tell me she was too young for speech therapy (even though every online resource emphasises the criticality of early intervention).

And now they're saying all they would do at this age are speech " strategies" which non professionals (me, her dad, nursery) can deliver just as effectively as speech therapists. To be honest I think this is an excuse because they don't have the resources and staff to actually support us. Her neurology team at Great Ormond St have said speech therapy is crucial to do now. I've sent that letter to our speech therapist and also sent emails being polite but critical of their approach and explaining why DD's very unusual brain injury and development means that leaving it to non professionals is frankly neglectful - all 'standard' strategies need significant adaptations to work for her and they really need an expert to oversee and advise on this. The latest is that they've said they're reviewing her case with their more experienced colleagues and I'll hear back in a few weeks. But I know that they're extremely understaffed and stretched in our area so I'm not holding out much hope.

Sorry, that just turned into a rant about SALT!

@PeachPearPlum7 would you be able to pay for speech therapy?

It's crap that you'd have to consider that but I agree - it's time critical.

I am sorry to tell you this but until we got through our first tribunal, we had to pay for every single assessment and intervention for our DD.

As well as signing and AAC, SALT needs to be in the EHCP in F too. Not just indirect provision, but direct too. DD isn’t too young so don’t let them fob you off with that excuse. Same with things like physio and OT. Following the AR, if the LA doesn’t make the necessary amendments you should appeal.

I don’t know if you are anywhere near these or if they will be suitable for DD’s needs, but Ingfield Manor School in West Sussex and Paces in Sheffield offer free sessions for preschoolers. There’s others as well, some free, some charge, but I can’t remember them off the top of my head.

You have done brilliantly so far to get DD an EHCP at 2.

@Phineyj we could pay for it but I just feel a bit lost knowing where to start. It is in my list to look into but DDs case is so unusual I don't want to spend loads of money with someone only to find they're a bit clueless about how to help

@Headfirstintothewild that's a really helpful ster. Sorry for being thick but what's the EHCP 'F'?

**steer

F is the section of the EHCP where the special educational provision documented. Therapies like SALT, OT, physio should be included in here because they educate or train.

Ah thank you. Got it. I feel like I need to scour Mumsnet for tips and strategies for how to influence the EHCP. SALT are just so unwilling to commit to therapy. At the moment they just do three monthly check ins where they assess how DD is doing. It's like they're hoping she's magically going to start talking. But its always the same - zero progress. GOSH have told me that we should see DD as having a brain injury, like someone who's had a stroke, and so she'll need specific therapy to regain movements and abilities that literally come naturally to everyone else. So typical development just doesn't really apply to her. She needs help. But no matter how many times I share this with SALT or give them the GOSH letters, they revert back to their mantra that she's too young and doesn't need specialists. It's exhausting. But does that mean I have to appeal? Or threaten legal action? I'm scared of making them hate us and start to actively try and work against me. We're so reliant on the whole web of services (OT, physio, paediatrician, neurologist, metabolics). I worry taking action against SALT (or even starting down that path) will make the others less keen to work with us.

Ultimately, you may have to appeal to get therapies detailed, specified and quantified in F. Appealing to SENDIST is the route to secure additional support. Any appeal is against the LA, not SALT in particular.

Once you get therapies in F, the LA then becomes responsible for the provision and if they can’t provide it in-house/via the NHS, they must commission independent provision. Again, enforcement action would be against the LA rather than SALT.

Unfortunately, DC whose parents know the system and can advocate for them get better support. It shouldn’t be like that, but it isn’t going to change anytime soon. Showing the LA you know what they should be doing won’t mean DD gets worse care. Quite the opposite.

Wouldn't the GOSH team have some idea of which specialist SALT you could approach?

I'm sorry -- this country is so crap at the interface between different types of healthcare.

Much less serious case, but I had to pay for DD to have specialist eye physio that DH and both his DP (same condition) appear to have received as a matter of course through the NHS...

Is there a charity for your DD's condition? Other parents may be a useful source of info.

Another thought, if you can get it funded, the Children’s Trust rehab service in Surrey is brilliant for brain injuries.

OP, I think you need to let go of your worry about being "that person".

You can be polite and persistent and advocate for what your DD needs...not what other people think she needs. It's not rude to question whether a clinical approach is right, or ask for a second opinion.

I wonder if the SALT you are speaking to are actually a bit out of their depth.

Well, if she does go to mainstream she'd benefit from a dedicated 121 who is fluent and able to teach sign language. So the aim then becomes to get an EHCP that guarantees that. For that you'll need a tribunal level report from SALT (to prove need) and EP (to prove ability to learn) - I wonder if someone like RNID might be able to suggest people to turn to as your daughter faces some issues that deaf children face?

I think a specialist speech and language school would be a good fit with integrated SALT and physio as part of the curriculum. Look at ICAN but there are others. I would avoid mainstream - she won't get what she needs there and will have a TA glued to her who will essentially be educating her outside of the classroom. Pitch in for a school with all the therapies available because if you put it in now then mainstream or a private special school like More House in Blindley Heath may well be an option. You can opt for mainstream in extracurricular activities outside of school.