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Ds has been discharged from SALT i disagree - advice?(4 Posts)
Ds is now 7 and has been seeing SALT for 3 years due to dysfluency, the ST has always implied that ds' difficulties arise from his rate of speech and that he doesnt slow down enough to speak so gets jumpy. Ds has seen OT (and been discharged) who presumed he was a sensory seeker, 6 months ago i went myself to my gp with a list of my concerns and gp agreed to refer to CAHMS im still waiting to hear anything despite gp chasing up 3 times. Ive only met ST once at the beginning of treatment 3 years ago and recieved letters every months containing 2-3 lines that ds is working on breathing before he speaks and improving. Now i get a letter to say he's been discharged, personally i think ds still struggles massively with speech although his stammer is greatly improved its still apparent especially when worried/tired/change eg easter holidays he couldnt get a single sentance out without stammering repeatedly, he also stuggles to say certain words and cant speak without spitting all over the place (me usually!) i also often have to interpret for him when speaking to strangers as they cant understand him this is partly due to ds putting on a babified voice ALOT, he also gets mocked at school with other children copying his stammer. On top of this i feel his understanding of conversations really poor, ds loves talking its all he does and loves having a conversation with anyone and everyone but its very on his terms like he's talking at you rather than with you and for the sake of it like he's filling with nonsense to enable himself to be having a conversation because he so wants to talk to you ifykwim?
am i right in worrying that him being discharged now or is it likely that this is as good as it will get and he will improve as he gets older, the letter says he is in line with his peers but i massively disagree i can spot a huge difference between talking to ds and talking to someone else in the playground or listening to them talk to each other
I don't have much advice other than following your instincts, and if you believe he can be helped more then contact them. Speak to the ST who has been helping him, express your concerns and take it from there. You are his best, and sadly often the only, advocate. Keep plugging away until you get what you want, it's unfortunately the only way. I would have thought and hoped that if they believed this way the best he could be they would have discussed this with you. Sorry I don't have any more advice. Good luck.
Almost certainly this is down to funding and the SALT service having to reduce their caseload. It isn't fair but sadly it is what happens. It is worth making a formal complaint about the lack of therapy, if nothing else to create a paper trail about the failings. Is private SALT and option? It also sounds like you need to speak in person to the GP again re the referral. Maybe they would refer to a developmental paediatrician for you if CAHMS is oversubscribed? It does sound like you have concerns about more than just speech and so you are right to get this looked into. How are things at school? Have you considered getting a statement of special educational needs? If you can get this (usually is a long road and a long fight to get these too, people will tell you your child does not qualify but don't be put off) then you may be able to get SALT written into his provision and then the LA will be responsible for provision if the NHS fails to provide. Take a look at the IPSEA site for statementing advice.
There is nothing stopping you from calling CAMHS about your ds and chasing the referral.
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