No speech therapy

[col]

DS is now 2.8 yrs old. I have been trying to chase up some speech therapy for him today.

So phoned up the health centre who couldn't find his file. They phoned back to say that he has been transferred to CDC. Phoned up CDC who said that they might go in to observe him either this month or the next, hopefully with his paed.

BUT she said it depends on his behaviour (hyper and a tad destructive) as at the moment she said that she won't give him therapy, until he has calmed down. ( Can't remember the jist of the phone call.)

Quite a bit of his behaviour is down to the fact that he can't communicate.

 

She also got annoyed that i asked for a referral to the Nuffield.

 

I want him to be under the Nuffield wings, as they are really good, it was them that dx both his sister's with verbal and oral dyspraxia.

 

No one is willing to refer him

[Bullet]

Has she at least given you some guidance on how you can help him communicate at home?

[janet39]

hi your pead should refer him and you are right my ds is 7 years old and cannot communicate and his screaming and tantrums is down to lack of communication, you could get refered from your health visitor and try sure start they have there own speach and langauge therapist, give them a go you have nothing to loose, good luck janet

[zaman]

My GP referred my son to the Nuffield.

[col]

both paed and gp won't refer. Due to potential costs

[smallworld]

Hi,

can you self refer ? I know you can in some areas. Just an idea, although our eldest son saw a speech therapist at the same age and she just fobbed us off after he'd wrecked her room he's now being assessed for AS aged 10 !!

I wish now that I'd persevered, that'll be my 20:20 hindsight

 

wac

[col]

I wish i could waccoe, otherwise i would of done it myself as soon as he was born. When i was pregnant with him, i was referred to a genetist who said that he had a 50-50 of having a "speech problem" . He's goes to early years which i found by looking at the sure start centre. They have a salt that comes in once every three weeks. But she's there for some one else. But she will liase with my son's salt.

 

I think they are worried that the Nuffield may find him suitable for their unit. And the paed knows that could be a high possibility.

 

My local NHS is highly in debt. The fee's for the Nuffield unit is payed half by the NHS and half by the LEA.

[justamom]

BUT she said it depends on his behaviour (hyper and a tad destructive) as at the moment she said that she won't give him therapy, until he has calmed down. ( Can't remember the jist of the phone call.)

Quite a bit of his behaviour is down to the fact that he can't communicate.

 

They cant do that can they withhold treament because of behaviour! thats mad,,,, But like you say he is frustrated because of communication difficulties. I too would have been angry.....

[LizK]

DS is now 2.8 yrs old. I have been trying to chase up some speech therapy for him today.

So phoned up the health centre who couldn't find his file. They phoned back to say that he has been transferred to CDC. Phoned up CDC who said that they might go in to observe him either this month or the next, hopefully with his paed.

BUT she said it depends on his behaviour (hyper and a tad destructive) as at the moment she said that she won't give him therapy, until he has calmed down. ( Can't remember the jist of the phone call.)

Quite a bit of his behaviour is down to the fact that he can't communicate.

 

She also got annoyed that i asked for a referral to the Nuffield.

 

I want him to be under the Nuffield wings, as they are really good, it was them that dx both his sister's with verbal and oral dyspraxia.

 

No one is willing to refer him

 

That is really not on. Your SALT should be finding ways of dealing with his behaviour rather than using it as an excuse to not treat him. Last year the community SALT we were seeing started to hint that my son's hyperactivity and poor concentration meant doing direct therapy was pointless which annoyed me. We were getting weekly visits from the Early Yrs SEN team at that point and DSs preschool teacher was not impressed with that attitude. She had found Adam challenging to begin with but instead if buggering off had found ways of dealing with it and using different strategies like visual timetables and supports, games that appealed to his obsessions, short sessions etc

 

I think you have every reason to make a fuss. If your son needs SALT he should get it regardless of other issues, he should not suffer becasue *she* can't manage his behaviour the problem is hers not yours and she should get advice how to deal with it or refer him to someone who has that expertise. Sadly the SALT service is so chronically shortstaffed and underfunded that I think saying they can't treat due to behaviour is a convenient excuse. That's certainly what I felt anyway

 

Have you come across the Hanen 'More Than Words' book? It's a Canadian SALT programme for children on the spectrum, it's not rocket science but lots of common sense strategies to help communication that you make a part of your every day life. I think it's fab and wish I'd found about about it when my son was the same age as yours. You can get the More Than Words book from Amazon or Winslow publishers

 

Lx

[call me jaded]

col I think you'll find that if you write to them and ask them to confirm your understanding that they are witholding assessment 'until his behaviour improves' they will suddenly change their minds about the assessment. Give them 10 days to respond otherwise you will assume your understanding is correct and take it to the Disability Rights Commission. Remind them that the law is changing and that they need to make appropriate arrangements to see him.

[baddad]

Hi Col/All -

I'm going to play devil's advocate here - not because I agree /disagree with your views but because there is another valid perspective here, and it might be that a solution for your son needs to consider both angles...

 

Depending on how much difficulty your son is experiencing with communication, and the extremes of the behaviour he displays, it could be that alternative provision would be more suitable (note: alternative - not 'none at all' which isn't any sort of alternative!), and the SALT team are considering his needs as much as their own. If he's going to find structured, timed exercises/sessions challenging and upsetting, or possiblty completely baffling (?) there would seem little point in offering that kind of provision. Though it's not anything that you need to consider, that would also be a poor use of (what are in most parts of the country) very limited and oversubscribed resources, and that would be something the HA/LEA would need to take into account, regardless of any side issues about 'needs led' provision...

 

In your situation I would be asking for clear indications regarding the whys and wherefores of their decision to 'hold back' , and asking them what they will be offering in the meantime to enable him to access that provision appropriately in the future. If their response to the former makes sense and the response to the latter offers a genuine bridge between Point A and B go for it. if they don't answer those questions adequately, then go in all guns blazing!

 

Given your son's age, It might well be that something like Portage could offer a really valuable 'bridge', by helping him to develop some of the social understanding that implies the need for language... It may not be the case with your own son, but I have known many spectrum (!) kids of that age who have yet to comprehend that language has a purpose beyond that of getting needs met, and in that scenario language has no more value to them than a pointing finger.

 

Hope that's helpful in some way <'>

 

L&P

 

BD

[col]

found the MDT report. The feed back was on the 22 feb.

follow up app with the paed.

CDC will send out follow up joint app with speech and language therapy app in 6 months.

May needs observation at early years centre.

 

speech and language therapy

 

monitoring plus SALT will do early years visit.

for on going monitoring.

to be reviewed in 6 mths.

 

There has been a SALT going in once every 3 weeks, but she's there as part of something else. Although she said that she will liase.

The CDC SALT has yet to visit. She said she wanted to give him time to settle in. Well it's been 6 mths since he started there.

 

The LEA would like a report of the paed by the end of Aug. Phoned CDC up, he is due to be seen by the paed in Aug BUT there is a 3 mth backlog

 

So the way it looks at the moment is that she will go in and observe and i have to wait goodness how long for a SALT app. And that might just be an assessment . Then have wait again for some actually therapy.

 

Have been on to the phone to Afasic, who said i could try the patient advicacy liasion service or the chief of PCT. Due to them not referring on to the Nuffield.

 

Have spoken to someone today, who is going to speak to their colleque's next week. So ijust give them his reports and try and write down what he says over the week end.

 

I just want him to be referred. While he is still young and be seen and have some intensive before he start's school.

[col]

The paed has phoned!!! I left a message last week and she actually returned the call. She going to have another look at his notes and speak to the 'lovely' SALT.

Her excuse was that she didn't think he was a suitable child for the unit. Didn't think he meet the criteria, of having dyspraxia??????

 

Both my other 2 have got verbal and oral dyspraxia, it was the Nuffield that dx them with that. There is no mention at all in their CDC notes before their referal of having dyspraxia nor was it mentioned to me. (me think's someone may of been applying pressure , who i have no idea, although the Nuffield know that i want him there and the Nuffield are convinced that they will see him).

 

So keep your fingers crossed, i just have to keep nagging her now, otherwise she will try and sweep it under the carpet.