should I push for more support for ds?

[maddiemo]

Ds4 has been seen by the cdc education team who assessed his expressive language at 2 years and his receptive language at 18 months. He has just turned 3.
He has many autistic traits and in front of the staff lined up his toys,rocked, only looked at the letter and number toys and would not allow the staff to approach him. Despite this the staff feel that his problems are based in language and have said that Portage would be of little use. We have been referred back to SALT who referred us to the cdc in the first place. The cdc staff feel that he would benefit from a place at their language school but the referral for this must come from SALT. When I looked at the literature the cdc gave me he needs a complex langauge disorder diagnosis from a senior SALT to access this group. I have been waiting for SALT since March and the waiting list for senior SALT staff is around 1 year.
The cdc staff also feel he needs a ISA for pre school which he starts in Jan, as he is very poor socially with his peers. However, when I spoke to the nursery he will attend they said they had been waiting over three terms for an ISA for another child. The nursery want me to kick up a fuss as they would like him to start with support in place. The problem is the cdc team make me feel guilty. When they were assessing ds4 they made comments about how they would give anything for some of the children at the cdc school to be able to use langauge as well as ds4. This makes me feel bad for asking for help for ds4.
I know there are children with far greater need but still feel concerned. I don't know if I should stick out the waiting lists or kick up a fuss about getting help sooner.
Also having ds3(autistic) I am very aware of how devious my LEA can be and that for stats it looks as if d4 is being helped when in reality he is just moving around waiting lists.
Any suggestions?

I would say get as much help as you can Maddiemo and unfortunately sometimes you really have to push to get the right help for your child.
My dd is in a language unit and it has been brilliant for dd. The level of support and education is excellent. My dd has, they think, a high level pragmatic language disorder (say that when you're drunk ) but it is only mild - moderate. My dd's language is very good at times but it's the pragmatic (social use) that needs the work.

If you need any more info Maddiemo please do not hesitate to ask or CAT if you would prefer.

I don't understand why they think that portage would be of little use. I think you need every little bit of support that you can get.

Thanks bh. I wonder if ds4 is similar to your dd as I know you have been concerned in the past about some of your daughters autistic like traits. Ds4 has loads of autistic behaviours but not the right sort of personality for an asd diagnosis in my opinion.
Ds1 needs the computer for homework now. I will take up your offer as soon as I get a chance as I would like to know how you got a diagnosis.

Coppertop. I think its all about waiting lists again. Too many children on list with greater needs than ds4. Three years ago when ds3 had portage the wait was around 8 months, I know it is more than that now.

Maddiemo - At some points I have almost begged for an asd diagnosis just so I can understand my dd more.
I now realise that language disorders are seperate disorders in there own right. It was only last week that I was speaking to the SALT and she explained that some children, like my dd, are not on the autistic spectrum but it would be normal for them to have a few traits. TBH honest dd only has a couple, such as echoing, fingers in ears and occasional peripheal vision. For every reason I think she may have an asd there are 10 reasons that she isn't. If that makes sense.
I have accepted now (after a long, long time of worrying) that dd is not asd but language disorders are a valid diagnosis. As the SALT put it you can have a child with dyspraxia but that child will always present with traits of something else. She reckons that you should think of all of these disorders (autism, language disorders, dyspraxia etc) as being like a cold some just have one or 2 "symptoms whereas others have it full blown. That really helped me to look at it like that.
The main thing for me now is to make sure that dd is getting all of the help she needs and fortunately she is (had a meeting today - that's another story!).

Maddiemo, I think you should try and get portage - it would provide support for you and give you someone else to help find out about appointments etc. It would also give you a second opinion on how much you should push and maybe some insight into what is happening with waiting lists. Portage can also refer to other people and that might help push you up some lists. Plus I can't see why they are saying portage is of no use - portage can work on language goals as well so may well be of use to ds4.

I think you can refer yourself to portage in many areas and I would suggest trying that.

Is ds4 at any kind of play school/group yet?

maddiemo, this kind of thing just makes me so angry. I thought the whole point of cdc's was to be able to do joint assessments and referalls. You shouldn't be shunted from one waiting list to another. I know it is easier for me to say than to do but I would kick up a fuss and push for the earliest senior SALT appointment possible. Don't feel bad. This is your ds and if he needs help, he needs it regardless of who else does.

I just don't understand why the cdc can't refer him to the language unit if that's where they feel he should go. It is just ridiculous poxy bureaucracy. Grrrrrrrrr .

We don't even have a cdc unit where we are. It was a nightmare when dd was first being assessed.

PUSH PUSH PUSH!!!!

I was made to feel guilty at the SAME cdc as you are talking about- when I tried to chase up DS1's 3 month reveiw (turned into an 8 month wait). When we finally moved to Devon and had his assessment he was by far the least able child in the group- and now I am constantly told that he is one of the most complex needy children on SALT's books (still doesn't get any mind- but that's another issue!).

Also your SALT team seems to have habit of dishing out 6 week sessions to children with very minor (and easily fixed) speech problems. Do not feel guilty at all- push!

Thanks for so many replies.
Saker My portage team, pre school sen sevices and cdc educational services are all run by the same people. Even if I self referred I would be seen by the same people.
Bh He attends a mums & tots group but does not start nursery till Jan.
HITC and Jimjams You are both right. No one else will fight for him. I just hate the guilt trip the cdc staff lay on you. I also have made a complaint against the cdc in the past, when the waiting list for diagnosis was in excess of two years but our LEA was refusing to statment children without a diagnosis in place. I feel that I have a trouble maker label attached to me.
Ds4 goes to a new children meeting at his nursery in a few weekss and hopefully we can make a joint request for support.
Jimjams At least I know its not just me the cdc does the guilt trip on.