Lack of speech - demanding more investigation?

[messmonster]

There seem to be a number of S&L threads on the board at the moment which prompted me to post something that's been bothering me for a while.

My DD is 4 and has a v rare chromo disorder that means she's globally delayed. She's made great progress in her receptive language over the last year particularly but is still non-verbal in the sense that she has had only 2 or 3 recognisable words (up, mum, in there) which she seems to use a few times and then forget and relies on vocalisations, gesture and some signing to communicate.

It's known that children with related chromo disorders (affecting chromo 9) have particular delays with speech and some remain non-verbal. Many with chromo 9 disorders in the States are diagnosed and treated for verbal dyspraxia but diagnoses for this in the UK seem really rare (for kids like my DD).

At the moment she receives no NHS SALT input because she attends a SN preschool 2 sessions a week which has an in-house SALT. We are doing a lite home programme based on ESDM principles which obviously has a focus on developing a meaningful communication system for her - using sign whilst obviously encouraging speech.

Sorry - getting to the point now - my issue is, I'm not happy just accepting that because she has an abnormality in her chromo 9 make-up that we just wait for speech to make an appearance or not. I want to know why it's so hard for her to talk, whether she might have verbal dyspraxia (she seems to have some of the criteria but I don't think she'd qualify yet for a referral to the Nuffield), I want some proper assessments done to identify where she is receptively and expressively etc. I want a proper plan to know that we're doing all we can to help her with speech.

So, I'm prepared to throw money at it to talk to the right person but I just don't know who to talk to and what to ask for? Am I just kidding myself someone might be able to give me some answers?

Sorry, this turned out to be a bit long. When she was diagnosed at 2 weeks and I read what little info is out there (thank you Unique ) my biggest fear was that she might never talk and her 4th birthday seemed like a bit of a milestone with still no speech - I think I've become a bit fixated.

Any ideas welcome! And, thank you for reading

whereabouts are you? a couple of people mentioned and recommended sarah colebourne for verbal dyspraxia, if you want your dd assessed about whether she has this. the website is this www.dyspraxiatherapy.co.uk/ and based in north london. apparently she is good, so may be worth a try
(have not tried her myself, but i will do if i dont get anywhere with nhs)

does not seem right your dd not getting any nhs salt :(

Thanks Firawla I'll follow that up. I looked at the Nuffield site based on a mention on here in another thread a couple of days ago but don't think my DD has enough words to fulfill their referal criteria.

I'm in scotland so things might be different but is the SLT in the pre-school not an NHS SLT? If it's a state school then I would imagine the SLT is an NHS SLT just working within the school.

Whether your SLT is NHS or not they have a duty to ensure you are kept informed of their input with your child and their aims and objectives for therapy.

From what you write the work with your daughter is focussing on her receptive language which will be the important basis for her to be able to use her expressive skills whether that is verbal or some other means. Can she copy facial movements like sticking our her tongue, licking lips, kissing? This of course will depend if she gets the idea of what your asking or wants to do it!!

My advice would be arrange to speak to the SLT in the pre-school and talk through your concerns and hopefully they will reassure you of thier input and what they are working towards. Learning to talk can be a tricky process and can take time to get going. Also at age 4 with a global delay you might find she is not quite ready for anything too focussed as the foundation skills need to be in place.

But if you don't think she is getting the support she needs then do make some noise!

Good Luck xx

Our foster child only began developing speech at age 12, he is severely developmentally delayed and severe autism. I wish I had known about the techniques that have helped him, earlier. How much more could they have helped him if he had received earlier intervention? These are the techniques we have used and/or are still using, all implemented within an ABA/VB program: Beckman Oral Motor, Talk Tools, tactile cueing (like PROMPT) and Kaufman Speech Praxis. He now can communicate his basic wants and needs using speech which is huge for him, he has learned about 70 words in 2.5 years, which considering his disabilities and the age at which we started has just been magical. I am a firm believer that with the right technqiues but also the right intensity of intervention that many children can develop speech.

Jackie Harland at London Children practice. We've been to both Sarah Colebourne and Jackie Harland, but I personally liked Jackie better.

Wow, thanks everyone for your responses.

Janie the preschool SALT isn't NHS, there's a local agreement apparently that children who attend the pre-school are taken off the NHS caseload for the duration of their time at the school I will take your advice to probe further about what they're working on specifically. I have mentioned dyspraxia to them but they felt that it was too early to know if it was an issue for my DD. She can't yet copy all facial gestures e.g. can poke her tongue out, but can't move it from side to side etc

PleasantSpice thanks so much for the inspiring story and the references of things to follow up. I've heard of Talk Tools before but not Kaufman.

Paribus thanks for the Jackie Harland recommendation - another option to explore.

Thanks so much all

Did your SALTs actually tell you that 4 is too young to be diagnosed dyspraxic??? Wow. Just wow.

I can't recall their exact words but it was certainly along the lines of "we think it's too early to tell, it's much more likely to be related to her GDD". In their defence, I wonder if they meant that it was too early developmentally rather than chronologically iyswim - i.e. she wasn't developmentally at the stage of being able to produce words for them to be able to properly assess if it was a production issue?

Does that make sense? I've post-rationalised this obviously but it seems to make sense to me having looked at the Nuffield criteria for referrals and me realising that my DD doesn't have enough words yet to qualify. I'd just really like someone to give me a reasonable explanation as to why she can't talk but maybe no-one really knows why

Go to Jackie Harland. She is really, really good. And she's straightforward with you- she will not pussyfoot around ifykwim. The assessment was about 380 pounds last year, but was so worth it.

Paribus do you know if I can visit JH for an assessment and then take her findings/advice etc for application back in our home area? I looked at the London Chidlren's centre website yesterday and read a lot about their programmes which tbh isn't really what I want right now - I want a second, reliable opinion and some guidance on what we should be doing that I can apply into her home programme and share with her SN preschool for action.

Pursue the NHS route too, go abck to your GP or paed and request a full SALT assessment.
Attendance at a particular school or nursery should not exclude a child from accessing NHS services, if anyone says this is the case I would ask them to produce the policy that quotes this blanket ruling! I bet they can't.
Shout loud, you'll get heard.