New to SEN - non-verbal and afraid for the future

[SapphireSparkIes]

My daughter is 4 next month and was diagnosed with GDD a few weeks ago. The most noticeable issue we have is that she is currently non-verbal - she has about 10 words and communicates mostly with noises and makaton signs. It’s been clear to us for a while as well that her understanding is behind.

During her assessment, the paediatrician said that while DD is where she should be for social communication and for self care, she is about 12-18 months for speech and between 2-3 years for gross and fine motor skills as well between 2-3 years for general understanding. She didn’t walk until 21 months and she’s only recently learnt to jump. Although delayed, she got there in the end so I’m so, so hoping the same will be true of her speech.

We are awaiting the results of genentic testing.

We are 3 weeks into the EHCHNA process and awaiting their decision. We need to make a big decision soon on which way to go for her schooling and we’re feeling a bit lost!

Is anyone or has anyone been in a similar situation? How have things progressed for you and your little one now? Will my little girl ever speak? Sending love to anyone navigating this different path❤️

It’s a good sign that she has some spoken words. It can be difficult to predict the future re speech and general development at this age but specialist support and early intervention have a huge part to play.

Do you have strategies from Speech & Language Therapy? Is her language functional or is she just naming or labelling? Are you using any visuals or PECS alongside speech and signing?

Re school you will have a better idea after the EP assessment. Does she attend a preschool setting?
Look on your LA Local Offer to see what is available locally in terms of additional support.
Look at Preschool Inclusion Supplement.

You will get a feel for a school. Obviously special
schools have small classes and well trained and experienced staff. Some mainstream schools are more inclusive than others.
If you get an EHCP it will widen your access to choice of primary schools.
If you can get a special school place, if that is suggested, mainstream could be an option in future but few (if any) parents want to tbh.
Doesn’t work so well the other way so if you decide to try mainstream then seek specialist that can be more difficult in my experience as often there are no places.
If you want mainstream that is your right but look for the right fit.

Thanks for your super helpful reply. I would love for her to be able to cope in our local mainstream primary - it’s where my other children went and one is still there for a few more years. We have been to see some local specialist schools and have some more appointments lined up including with the SENCO and Reception teacher of our local primary. We’re trying to be realistic - lots of conversation just goes over her head. That along with the fact she doesn’t speak makes me feel she just won’t cope, especially beyond Reception. She’s in nursery and she can be quite good at getting her point across via makaton signs and pointing/leading etc. She follows simple instructions.

your point about it being too early to know what to predict - I totally agree but this is what makes it all the more difficult to know which school to choose! It may be taken out of our hands to a certain extent if our ECHP gets held up for whatever reason and we’re forced to choose mainstream. But I’m leaning towards your point of it being harder to transition from mainstream to specialist rather than the other way around.

She is potty trained which I think must be a good sign.. she’s very sociable and isn’t delayed there. Just clinging onto the positives! 😩

She has had a block of NHS SLT and private too. Due to resume private after half term. We do have some techniques to use and I use them all the time. But sometimes it feels as though it’s just not working. She physically can’t seem to make many sounds at all. Her words aren’t always clear and are often more just sounds that I recognise she uses as words - Mama, Dada, more, look, where, dinner and bye bye. She also says her name. All of the above she uses consistently and in context.

All sounds good. Toilet training is impressive. Lots of typically developing children start school nursery without being trained now.

I have worked with lots of children who did not speak but who were far better communicators than some who had language that was not functional. They either used echolalia or just said words without gaining attention or directing them to anyone or to make requests.
I remember one little boy during sand play. One child said she liked Peppa Pig. He tapped my arm pointed to himself and nodded enthusiastically. I said “ you like Peppa Pig too?” and he nodded happy to be understood.
There will probably be a wide range of abilities and children with a range of communication needs in Special and Mainstream.
Just try to make the best decision for you as a family and what your DD needs. The EHCP will be reviewed annually but you can request an early review if you aren’t happy.
I know what you mean about delays things seem tougher than ever.

As well as SALT, has DD seen an OT? What about physio?

If the LA agree to assess, make sure to request they seek advice and information from SALT and OT during the EHCNA.

If you are only 3 weeks into the EHCNA process, you are unlikely to have a finalised EHCP by the January deadline, so you should make an application via the normal admission process just in case. If/when an EHCP is later issued the placement named in there will override the normal application.

@24Dogcuddlersuper interesting about the functional language element - in the Peppa Pig example, my daughter would tap you on the arm, say ‘yeah, yeah’ while nodding.. she would tap her chest and say her name. This is how she would communicate she also likes Peppa Pig! We are working on the makaton for ‘like’ and although she picks the signs up generally pretty quickly, she’s struggling more with verbs at the moment. One of my ST targets is to be working on verbs with her.

@flawlessflipper invaluable advice, thank you so much. We are completely new to this and will definitely explore the other boards 🙏 I will have a look for more advice about how to navigate the assessment phase to make sure we get the most out of it.

She has a paediatrician report with her GDD diagnosis and an SLT report. She has also been diagnosed hypermobile by physiotherapy but they have discharged her now.. nursery made an OT referral just to see what they would say basically - they referred us back to online resources as they didn’t feel she was of high enough need for it. I think our paediatrician maybe agreed - that part is fuzzy in my memory but we definitely discussed it!

Yes I’m probably quite naively optimistic the EHCP process will go smoothly 😬 but will definitely apply to mainstream in the meantime. We were led to believe we had plenty of time - worrying really how much conflicting advice there is out there.

IPSEA and SOSSEN are good places to start for information on EHCPs.

If the LA agrees to assess you should request advice and information from SALT, OT and physio during the EHCNA. It doesn’t matter that the physio has discharged or OT only signposted to online resources. DD needs those assessments to inform the EHCP. The threshold for seeking advice and information during the EHCNA is different to the threshold for normal NHS referrals. Similarly, provision in EHCPs isn’t based on the normal NHS offer. You don’t need to sit on the normal waiting lists either. For SALT, a general report won’t be sufficient for the EHCP. General reports are written in the right way. They don’t set out the needs, provision, outcomes in the right way. They aren’t detailed, specified and quantified enough either.