Any advice or experiences would be great...I'll try to keep this short!
DS (just turned 6) has speech problems, only with pronunciation, which stops him from being able to communicate with others, especially non-family members.
He has Benign Joint Hypermobility Syndrome (very mobile joints, 'clumsiness', lack of co-ordination, low muscle tone and severe pain).
I begged for SALT from 18 months till he was finally referred at 4. He has had four blocks of therapy (5, 30 minute group sessions)with two therapists.
Recently I requested a meeting with all people involved in his care (can't remember the name) because I was sick of having to chase up appointments and nothing ever happening. SALT didn't bother to attend. Paediatrician said no need to intervene with SALT because "they were handling it". I tried to explain that they hadn't a clue and were doing nothing except stalling, but he didn't give a toss.
SALT have given various reasons for DS's problems...problems with soft palette, large adenoids, glue ear. All have been dismissed with tests. Verbal Dyspraxia was suggested, but was dismissed after his current dopey therapist did a 'pre-assessment' whatever that is, for V. D.
Now, after delaying DS's latest review by making him wait for ENT and hearing tests (which they put on the non-urgent list after telling me it was on urgent, grrr) they have managed to make him miss the next scheduled group session which his big sister is attending, and making loads of progress.
Therapist says they do not expect him to make any progress.
They have offered him a computerised voice thingy, and said he must attend a special language unit at a local school, where he 'may' be able to attend some mainstream lessons. He is home-educated. I asked about what provision there is for HE children and she said none. I asked for the 1-2-1 sessions they had promised if he did have V. D. but amazingly they have vanished into thin air, I must have dreamt that up then
I have offered to take him to the school just for the language sessions, but was told that would not be allowed. I asked about flexi-schooling, but therapist seemed never to have heard of that before. And she didn't even know which school it was...gave me the name of the one for older children, so I had to find out myself. And the voice thingy...well, I think he will just find that very frustrating and slow. And she said he will need to type what he wants to say. Not very practical for a little boy with a lot to say.
I pointed out that he would not cope at school as no-one would understand him, I would have to go in to give his medication, and he simply cannot keep up with other children as his pain is too bad, but nothing made a difference. Till I started to cry (was having a really bad few weeks) and she said he could have a block of intensive therapy, 5 sessions again, but that is all. And he obviously has to go on the waiting list again.
I am now utterly, utterly, pissed off fed up
How dare they write off my lovely little boy? He is so willing to co-operate, and practice his therapy, so desperate to be able to speak to someone in a shop without me having to translate for him. He's a big boy, people think he is 8, and expect a 'normal' conversation when they speak to him, so they almost recoil when they don't understand a word he has said. He has taken to just answering 'yes' or 'no' because it is easier. Other children are teasing him.
Oh, and then therapist went on to tell me he had made some improvements since he had started....contradicting herself. He is making progress I can see that, but it is very slow and a lot of hard work.
I am thinking of getting an independent SALT assessment and Verbal Dyspraxia assessment. Is this a good idea? Will it help, or just wind up NHS therapist....I'm already on shaky grounds with paediatrician and GP.
I really don't know how much more of this I can take....seriously considering telling them where to stick their pathetic sessions and go it alone!! Except I am not an expert and don't want to make things worse.
Thanks for reading, Pinkie
PS. I am not deranged or ungrateful for help, just fed up with a whole load of stuff that I cannot really post about. And tired, so tired with three kids waking in pain night after night after night.......and having to fight for every scrap...like the second-hand, mouldy bath seat from OT.