Speech Therapy Assessment - WWYD please???

[MrsVictorUbogu]

DS is 7.5, has Hypermobility/Ehlers Danlos Syndrome. He also has a speech disorder. No-one outside the family can understand him at all, and even family are struggling. It is like he has invented his own private language which is almost impossible to decipher. He misses fronts, ends and middles out of words, adds in sounds where he shouldn't and swaps one sound for another. He can produce some sounds when asked, but not consistently. Others he can't say at all, watching him try is like watching someone who can't whistle try to learn....he 'chews' the sounds as he tries to make them.

He's been having SALT since he was 4, in blocks of 5 sessions (30 mins per week) every 6-7 months. Almost each block is with a new therapist, due to the waiting list times. He has made almost no progress at all, despite me doing 'homework' with him, correcting him, not correcting him, making speech therapy into a game, getting all the family involved, pushing him harder, not pushing at all. Nothing seems to be working. :(

He is mid-block at the moment, latest therapist has decided to go right back to the beginning with him, and concentrate on the first four sounds he learnt (k.g.d,t) this was too confusing for him, so she has decided to try just k and t.

His concentration is great, and he is willing and co-operative, even though he finds not being able to 'get it' frustrating.

He has never been assessed to find out exactly what the problem is. I have asked several times, and been fobbed off. I demanded an assessment, was told he needed a 'pre-assessment assessment' which turned out to be his therapist at the time going through the flip chart with him (which they use anyway at the beginning of every block. She then decided he didn't need any further assessing, but recommended him for one-to-one therapy (had been group up till this point). He had two blocks last year, made a tiny amount of progress, with a more intensive type of therapy (no game playing, which I had said there was no need for as he is always co-operative, actually telling him when he had made a mistake, not just glossing over it). Latest therapist has reverted back to playing games, babying him and trying to be 'cool' and his friend, not his therapist. I am sure they are geared towards 3-4 year olds, all the games and methods seem like it. And they were expecting very tall DS to sit at a nursery size chair and table

Anyway......reasons for posting are.......

Should I push for a proper assessment. I would like to know what exactly (if possible) DS's problem is. Also, I want to know if he will ever improve (thinking long term) currently he can't ask for something in a shop, have a conversation with anyone except close family without me being interpreter. If the answer was no, then I would be devastated of course, but at least I could relax a bit, and concentrate on other methods of communication.

Is there a programme/certain therapy that would be helpful?
Is he entitled to to more intensive, more regular therapy? (I am willing to pay for this, will be a struggle, but if it works then so be it)
Is it worth the effort of trying to get him statemented, as he is home-educated?

Also, I am unsure whether or not to just go private for an assessment....will the NHS take it seriously, or will it just irritate his doctors/therapists? (That is what happened when I got his initial diagnosis privately )

I know I sound like a miserable bitch, but I really am grateful for the treatment DS gets, it is just that I feel the time has come to make a decision. If speech therapy will work, surely it is better to have it sooner rather than later?

I just don't know what to do for the best, so if anyone has managed to read this mamoth post without getting bored, :) I'll accept any advice gratefully!!

[working9while5]

Oh my God, get a proper assessment and demand a diagnosis of his speech needs. Demand it. This is ridiculous. He is missing fronts, middles and ends of sounds? He can't just work on a few isolated sounds in that situation, he needs a full assessment, and a differential diag-bloody-nosis of what is causing this disorder.

And then evidence based therapy for that disorder.

Seriously! PM me and I will send you something that might give you an idea of what should happen: can't share it here or it would identify me!

[MrsVictorUbogu]

Thanks for the reply....will PM you now!