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Here are some suggested organisations that offer expert advice on special needs.

So incredibly frusterated with speech and language services.

8 replies

NotJustKangaskhan · 22/05/2011 13:11

I need a shoulder more than anything. Sorry, this is long, but I want to get it all out.

My son is 6. I've been trying to get someone to look at his speech since before he was 2, and was fobbed off with the 'he'll grow out of it' until he was 5. He did outgrow the limited and copied speech mostly, but there are still a lot of issues that they were (and are) ignoring. Finally, a health visitor for his younger sister talked with him during a visit and agreed to pass on his details to the local speech and language services. I thought we were finally going to get somewhere.

How disappointed I've been. The GP we had to see to get on the waiting list agreed on his speech issues, but pretty much blamed the fact he didn't go to nursery or playgroups for long enough (He did for a little bit, but the staff couldn't deal with his lack of speech and understanding questions, it sent his speech skills and behaviour back months, it took us nearly a year after pulling him out to get him to where he was). After months of waiting after that, the first therapist seemed to understand the problem and was discussing a diagnosis of receptive language delay or disorder. He can hear what we say just fine, but he often doesn't know how to respond and will blurt out the first thing that pops in his head if he thinks there is an answer expected of him, especially if it is a specific answer - he desperately wants to be right. He's also very uneasy asking anything but the most basic black-and-white questions and gets unnerved in conversations outside of his black-and-white sphere.

We were told he would start seeing one regularly at home to work on his problems. Months pass. Then we got his assessment form back with his 'targets'. They were ridiculous - almost like they don't want to deal with his problems, so they'll nit-pick on the outer edges of it to look like they are doing something. They saw him at home once a week for 3 weeks, then the fourth appointment got lost in the December holidays. We haven't heard from them again until week before last, they wanted to do another visit with him to close his file. My husband agreed, thinking it was just a formality.

She walked in and promptly had my son do an assessment, which almost seemed designed for a child with his issues to fail. And again, when I tried to discuss his issues as a whole, they were brushed off and replaced with her concerns on tiny ridiculous things. She wouldn't hear that he normally uses ordinal numbers or his/her correctly in day to day life when he didn't think an answer was expected from him, that his issues centred around something other than not picking the second from the right rather than the second from the left when she asked him pick the second balloon without a qualifier. And again, I felt the finger of blame as she asked very pointed questions and remarks made about his early years and current socialization (He's home educated, none of the local schools provide any speech and language help anyways until secondary level so he'd be getting the same service regardless).

She said as she left that she would arrange further help. I really want to just turn it down when the letter comes. It is not helping, it's creating more issues for him if anything (he now gets quite nervous if he gets his hes and shes wrong as the visiting therapists banged on about it to him quite a lot), and I'm just sick to the back teeth of them ignoring his real issues and blaming us. My husband worries that turning it down will get us into some sort of trouble, social services or something, but as his educational work and progress has been assessed and approved by our Elective Home Education Officer who knows about his needs, they can't really say we're not providing for his special education needs when what we've done without them was pretty much LA approved.

I want help, something to help him would be lovely, but the speech and language services here and just not doing it and I don't know if I can put him through it anymore.

OP posts:
Gigglebizmizz · 22/05/2011 14:09

Blimey that all sounds just awful. This may be stuff you already have done but my DD had really limited speech by 3 she could only say about 40-50 words. She had her hearing checked and had significant glue ear in both ears she then went on waiting list to hospital to get vents or grommits put in this drains the fluid her speech came on almost immed but she had lots of catch up to do. This has had a massive impact on her interaction with her peers as she has just had not much practice at social interaction and also with her attention and listening as she has been so used to being in a wee quiet world of her own.
So sorry if you have already done this but have you had the ears checked for fluid I wish I had done this when DD was a baby.

yomellamoHelly · 22/05/2011 15:59

Can you find the money for a private assessment? Sounds like your ds needs a statement to ensure he gets the help he needs. No guarantee it'll be sorted by secondary school age if you carry on as you are. Also can you afford a private SALT for some help on a regular basis / plan of action?

dolfrog · 22/05/2011 18:00

A Listening disability could be part of the problem, and these types are not clinically diagnosable until the age of maturation, 7 - 8 years of age, when children stop growing out of these types of developmental problems.
We learn to speak by listening to the sounds of speech of others, and then reproducing these sounds to produce our own speech. This process can be hindered by Auditory Processing Disorder (APD) which is a listening disability or not being able to process all the sounds that you hear.
APD can have a genetic origin or can be acquired after a severe Ear Infection such as Otitis Media with Effusion (Glue Ear, need of grommits to vent fluid)

beautifulgirls · 22/05/2011 18:50

I would suggest you go back to the GP and ask about referral to a developmental paediatrician. Ask on the basis that therapists have been suggesting there is more to this than just speech. Once you see the paed you can hopefully get everything looked at and all being well confirm to yourselves and therefore the speech therapists that speech is his only issue. If you can then get the paed behind you on this too you may get more leverage for therapy. Sadly however speech therapy is like gold dust and you are likely to need to fight for it and may still get nowhere. We are in the process of trying to get a statement for DD after a 2yr fight for any therapy at all despite them issuing 2 reports saying she needs therapy. Seems they are only able to assess but then do nothing about it. A private speech therapists report and if possible some delivered therapy would also be a good idea if your finances are able to stretch to it.
I share your frustration.

Veritate · 22/05/2011 18:50

You don't mention what if anything is happening at school and that is probably the better route to go down. It is obviously important that the school should be fully on board anyway as speech is going to have a very important effect on his ability to access education. You may need to consider making a formal request for statutory assessment - look at the websites for IPSEA and SOS!SEN for further information.

StarlightMcKenzie · 22/05/2011 18:55

You need to go to your GP and ask for a referral to a developmental paed.

You will get further down that road if you look up Autism and raise any concerns that you have that 'could' allude to him being on the spectrum. I'm not saying that your ds is. I have no way of knowing, but the GP will take you seriously if you do this.

Sorry you're having such a horrible time. Sadly, you're not alone in this.

NotJustKangaskhan · 23/05/2011 11:31

Thank you all for your suggestions and for the comments of support and commiseration.

He has had his ears checked, his hearing is fine and he hasn't had as much as an ear infection in his 6 years.

Getting a referal from a GP for a developmental paed is a great idea - I just hope it isn't like last time we went to them as it was a bit like tennis (the GP and the health visitors couldn't decide who was responsible for it so we were bounced back and forth). Thankfully we're at a new GP now.

As I mentioned in the OP, he is home educated, so not in school, so while we are obviously fully on board with his speech and it's effects on his access to education, a assessment or statementing is not possible as we are outside of their remit, so it is not statutory for them to give it or anything else which is why we have been going the NHS route (though are again looking at private but there seems to be little in our area). The Elective Home Education Officer is fully aware of his needs however and would support us via letters that getting further support is part of his educational needs.

OP posts:
StarlightMcKenzie · 23/05/2011 11:43

Just so you know, - you can get a statement if you are homeschooling.

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