My ds is 3.2, he has sn - gdd, hypotonia, severe reflux, swallowing problems (he aspirates causing frequent lung problems) etc. He is part of a study into a genetic condition called Kleefstra Syndrome - which he has a lot of genetic markers for.
He has a severe speech delay, which is consistent with kleefstra syndrome (where some children develop to be completely non verbal). He has no words, no babbling apart from a monotone 'unh' sound. His mouth is always open and his tongue protrudes, he has poor oro motor skills and drools (which is controlled by medication).
His understanding, whilst delayed, is much better than his expressive language. I have been signing makaton with him since he was 10 months old, and he now has quite a few signs. He was issued with a Go Talk communication device, as he is so good at using the ipad, that his SALT thought that AAC may be a good way forward if he remains non verbal.
I feel that ds has been sorely let down by the speech and language service. I don't feel he has ever had a thorough assessment, and apart from a videofluoroscopy, his oro motor skills have never really been dealt with.
He has now not seen a SALT since March when his GoTalk was issued, a lot of our provision has been to hand me a pile of signs and picture symbols and just get on with it.
After many phonecalls and letters, we are finally meeting a new SALT next week. So the questions I would like to ask you, are in light of this.
What should I be expecting in terms of support for ds?
How much SALT should be done by 1-1 at preschool?
Is there some sort of programme we should be following with the GoTalk (because frankly we are floundering!)
And finally - why do you think NHS SALT is letting down a child who has such severe needs in the area of speech and language?
Thankyou