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❤️

I can totally understand you reeling a little

Have tou found both the SN Chat and the SN Children sections yet? I think both of these might be useful in helping you to devise which route to take either her education and can help with things like asking for referral to Portage and OT and applying for DLA

My DD was given a GDD label at 2.9 and then moderate LD at 4.5. She was verbal but disordered in it. She was 6 months behind verbally, but 18 months behind in motor and social skills.

DD1 went to special school. She has developed in her own way but she's always presented in ways that are typical for a child about half her age. Now that she's 19, the lag is slightly larger in some areas.

DD1 won't be truly independent, but she will probably choose to live in heavily supported living at some point.

Both my DS were non-verbal til 4. The eldest started talking somewhat then, DS9 still non-verbal. They both attend a special school which is amazing. I would look at all options - think we looked at 10 schools of all types. Think about where you could see her.

I think it’s good advice to visit a lot of places but be aware of the sales pitches.

my son is non verbal at 6 and has significant challenges. He attends a wonderful specialist autism school. Everything is catered to what he needs. It’s incomparable to what happens in mainstream. Their facilities are amazing. Just go and see lots of places. Have questions you want to ask based on your child’s needs. You normally have a gut feeling.

And I’d just like to add that having a late diagnosed DC with AuDHD in mainstream High School was not my idea of fun. God knows how me and DH are still married and I managed to keep hold of my job.

Thank you everyone. I’ve said all along that I just don’t feel qualified to make the decision about what would be best for her! I could do with a crystal ball.. I do feel that we actually don’t seem to have a great deal of options in terms of schooling for what I feel DD might need where we are which is really worrying me.

Our options seem to be 1) mainstream - ideally with a watertight EHCP although we are right at the beginning of the process and very aware we might have a fight on our hands. This would logistically by far be the easiest option for us. Being realistic as well, this option might be forced onto us if our SHCP doesn’t come through in time. I wonder if we see how she gets on and look to change in a couple of years if necessary..? I’m aware that it might not be as easy to get a place in specialist from mainstream though.

2. a SEN unit attached to a mainstream. Our options for schools near us that offer this are so limited. One would mean up to 40 minute drive and only goes up to Year 3 where she would need to transition anyway. Other schools that offer this Unit do so from Year 3. So won’t help us now - but if she starts at our local mainstream then we maybe look to move to a school with a unit?

3. Specialist school. Again, unfortunately really limited options. We are going to see one tomorrow and I’m so ‘looking forward’ to it, to see whether I recognise my daughter in any of the children there. They cater for MLD I believe and their website seems impressive in terms of what they offer. We went to see another specialist school the other week and it was predominantly for children with ASD diagnoses and we just didn’t see our daughter in any of the children at all and feel that with Social Communication as one of her strengths, that wouldn’t be the right environment for her.

If the LA agree to an assessment - I believe an Education Psychologist assessment is part of this - in anyone’s experience, are they ever good/honest/seem to have your child’s best interest at heart when they recommend which type of setting? If they say mainstream, will we still be allowed to name specialist school if that’s what we choose?

It’s therapeutic to write this down - I feel like I’m living and breathing this at the moment. So thank you for reading ❤️

Hi, this is very similar to our story, my daughter had a significant speech delay due to a cleft, we later discovered at 6 ish she also had learning difficulties when we applied for a statement. She did mainstream primary school till yr 6 then a special school from then on. We looked at every special school in the area and surrounding areas and applied to one a county over, but got given the nearest which turned out to be brilliant.

She stayed at this place till she was 19 then went to a special 19-25 college who have been amazing, she did work experience in a National Trust cafe which led to a job whilst at sixth form, then at college she did a supported placement in a supermarket which also led to a job.

Looking back its been so hard and I wish I hadn't been so set on mainstream primary, but it did work out as it was local and she has those local connections from it.

We had to fight to get both special places, the first went through without a tribunal but the second nearly went to tribunal but got accepted near the date.

I just wanted to tell you my daughters story as she is an amazing person and a total success due to the special schools she went to.