Feeling dispirited with non-verbal 5yr old with GDD

[JackieWeaverExistentialQTime]

Hello,

I'm wondering if anyone has a similar child. Dd has just turned 5yrs old, has global development delay and is awaiting an assessment for autism. She is non-verbal and it's getting very frustrating for both herself and the family.

I first realised something wasn't quite right when she was slow to sit (8months) and crawl (11months), compared to her siblings (she is youngest of 5), but I just assumed she was a bit slow to do things. However, she didn't walk till 19months old, and by this time we also noticed that she didn't respond to her name and didn't point. When she was 2yrs old we went to the GP with our concerns but she said to "wait & see".

Also around this time, our 13yr old dd was diagnosed autistic, completely out of the blue, so we were somewhat distracted with all of that. (I've since realised that I'm probably autistic myself!).

Anyway, by dd's 30month assessment, the health visitor finally referred her for an autism assessment with the paediatrician, and arranged speech & language therapy, which started just before she was 3.

We've tried signing and PECS, but she just doesn't seem to be picking any of it up. Her main method of communication is taking me by the hand to whatever she wants. She babbles, but no recognisable words. She has in the past said words such as duck, dog, cake, but she doesn't seem to retain these, saying them for a few days then that's it. Also, with covid, she hasn't had any SLT for over a year.

She saw the paediatrician over a year ago, who diagnosed GDD and probable autism, and referred her on for an autism assessment, but again, all this has been on hold for the past year.

Dd is now due to start school in August and I'm starting to panic. We have applied for a place at the local special needs school, because I don't see how she could ever cope in mainstream, but I don't think there is a place available for her, meaning I'll have to home educate her. I have home educated our other children so I don't have a problem with that, however, I'm not sure how exactly to educate a child with GDD! What would they be "teaching" her at school?

I'm worried about the longterm too. For the most part, she seems happy, but I feel I should/could be doing more. I feel like she is stagnating and not progressing, and I don't know what to do to help her. Will she ever talk or learn to communicate? I feel like she is just being left to stagnate!

This is a really difficult situation and when I very much understand. All you want to do is take away their frustration. DS is 11 now was totally non verbal till 9 and half years old. His speech is far from being functional, maybe 30 words some in context, some not. He has learnt how to use a communication aid, this is what reduced his frustration.

Is private salt an option? From our experience even when we did get seen by NHS salt it was only twice a year to give advice to school. There are lots of different communication aids that are available. Pecs and makaton are the NHS salt defaults. These work great for some kids but not for others. Ds never took to either and it wasn't until he was introduced to (aac) an iPad with symbol based speech software that he made any progress. Whatever communication aid you go with you will have to do the work yourself, there is very little support unfortunately.

Does she have an ehcp? This is really important if she is due to start school. The contents and support needed will ultimately decide what sort of placement you can go for.

Thanks for the reply.

She had been getting SLT visits at home every 2 weeks until lockdown. She probably had about a years worth of visits, though tbh, I don't really see that they helped very much. We tried introducing PECS, but dd just did not seem motivated or willing to co-operate at all. It's frustrating because everything I read is like "oh PECS really helped", but I never find stories about what if your child doesn't get on with it!

I'm not sure what an EHCP is (we're in Scotland so I assume it's slightly different). The health visitor has been trying to co-ordinate everything wrt applying to school. However, it seems that now dd is officially "school age", we've had to register her at the local mainstream school in the first instance (even though I have told them we have no intention of taking a place), and now the head teacher there is her "named person" instead of the health visitor, even though she has never met dd nor knows anything about her!

Things are also complicated by the fact that dd didn't attend nursery - we had been planning on sending her last year but due to the pandemic and having other family members who were shielding, we decided not to risk it. Normally they would have liased with primary school.

I suppose I'm just worried because it seems like every other similar child has learned to use PECS or Makaton or whatever by this age, and I'm terrified that dd will never be able to communicate.

Your username is brilliant!
My son is 3 and in the same position (although he has an autism diagnosis). He has not taken to PECS or makaton but we have been able to get regular NHS SALT through lockdown (via Zoom).
I found a book called 'More Than Words' by Hanen very useful for stuff to work on at home to help his communication and although he is non-verbal it seems to be helping with the 'building blocks' of communication - he has learned the value of communicating with us with sounds or gestures.
I agree that the Scottish equivalent of the EHCP is a good bet for getting the support needed in place and finding the right educational setting. I found autism charities and groups really useful for advice on how to apply and what to expect.

Hi my son is in exactly in same situation waiting for autism appointment his been diagnosed with gdd only differences is his in a mainstream infant school but they are only taking him for 1 and a half hours a day he gets 1 on 1 support but the school is saying he might be best at special school so not sure what’s best to do

Hi i have a daughter in similar situation. Wondered if anyone had any updates!