Just wanted to introduce myself here and ask for some advise for help with dd speech problems

[micku5]

I've been a mnetter for a while but have only recently realised there was a special needs topic area.

My dd2 (she's 2 yrs old) has Di George syndrome and on the medical side has a hole in the heart, partial immune deficiency and acute asthma which has led to many hospital admissions with chest infections or breathing problems.

On the 'social' side she has speech delay and although she has seen a SALT twice in 9 months i don't think she is getting any better and am at a loss as to how to help her.

The first assessment concluded that her understanding skills were approx 4-6 months behind but her expressive (verbal) language development were 9-10 months behind.

She does have a few words and the SALT has shown me some signs I can use to help HER communicate with us but to be honest it doesn't seem to be working.

There are times (like today) when she just screams when she wants something and when I have to play the guessing game she gets more frustrated and I end up getting stressed.

Anyone with any ideas of what to do next with trying to get her to communicate, be it sign or verbal?

PECS (Picture Exchange Communication System) is great www.pecs.org.uk. Dh is starting a Hanen course this week - it's run by Barnados in our area and is for children with communication difficulties. Might be worth seeing if something like this is available in your area?

You need Moondog really - she's the expert!

SALT twice in 9months is not enough!
Will she sign for things at all or does she just not bother? Food are usually good signs to get them going.
Have you ever watched 'something special' on CBeebies with her? My DS learned hundreds of signs off these programmes.
You could really do with a SALT group which meets more regularly and uses signs as part of the format. Then she would be able to see other children signing.
Also, you ned to sign to her at every opportunity. You will find you start to do it to other children and adults as well!!

Hello and welcome to the cn board.
would learning makaton or sign a long help?

I agree twice in 9 months is not good enough but I had let things slide abit.

I've only just learned some signs and use them all the time ie 'do you want a drink? and mime drink, food, biscuit, sleep etc those are the ones i've learnt.

She doesn't use any signs and will either nod or shake her head to answer. I've tried to get her to watch different programmes ie Fifi, tikkabilla, something special but she only like to watch Peppa Pig (and Spongebob and Ben 10 curtesy of her older sister) I think I'll have to tape it and then introduce it to her.

Both DH and I would like her to start nursery as we feel it may help with her social skills but at the same time feel that she will be frustrated when no-one understands her.

I will have a look at that website sphil and see if there is anything locally.

I don;t know about you but i feel as though I am always the one having to push for things. I had to push for dd to see an immunologist, a respirtory consultant, a comm paed and even SALT, does it ever stop?

I think the ones that SALT gave us was sign a long. I am happy to try anything at this stage.

Her understanding is very good but unfortunately atm we play 20 guesses when she wants something and when we get it right she cheers as if to say finally lol

No, the pushing never stops - but you will get better at it
Encourage her to sign by giving her a choice eg. would you like a biscuit or some crisps? then she has to sign one back to get what she wants.

Nat1H, i am beginning to learn that next step is to get some possible senco help for her when she starts pre school in April.

I have a feeling that will be another long drawn out process!!

Hi micku5! I think we met on the due Aug 06 board? Glad to hear you are still around.
DD has global developmental delay including severe speech/communication delay and nursery has really helped--she's learned so much from watching the other children. She isn't talking or signing back yet, but we feel anytime now...
If you're thinking of nursery you might find it helpful to start the statementing procedure asap. That way the nursery can access appropriate training/resources (well, ideally, anyway). Do you have a portage worker to advise you on good local nurseries, etc?

I think you can now buy a something special dvd from Early learning centre. Its in their new catalogue.

Hope this helps

buy the makaton nursery rhymes dvd with dave benson phillips, but be warned, it was all dd2 would watch for months and months. (it's also curiously addictive and you will find yourself signing the rap version of 'goldilocks and the 3 bears' when you have had too much to drink. )
and time to go back to paed and ask to specify regular SLT as dd is now getting frustrated because she cannot communicate.
always give choices choices choices, and use the OWL method (observe, wait, listen) and wait longer than you would do normally for any sort of response - dd2 took an average of ten seconds after i assumed she had not heard/ understood before she gave a response (either verbal/ or facial or movement), so once i had worked that out i could tell everyone to count to ten before they tried to offer the choice again.
it takes time, but you'll get there - hopefully with a bit of help from SLT!
are you a member of skinuk? if so, you could access alex's big mack lending service? big mack's can be helpful to kick off some communication too...

Thanks for all your messages. I was discussing this with my friends this morning and they also feel I should go back to SALT especially as Talia is getting frustrated when trying to communicate.

Arabica - good to see you!! I've heard of statementing but what exactly is it? I don't have a portage worker either... as I said before my local hospital aren't really forthcoming with suggestions or help and it's been down to me to find things out for myself.

I'm not a member of skinuk, will look into that. Will definitely look into makaton, something special isn't on atm so I'll see if my library has a copy I can borrow for now to see how Talia gets on.

micku5 Check out the Government website to check what you are entitled to and get it. Details of portage on there. Crap at links but I'll try www.direct.gov.uk/en/index.htm
Look at Caring for someone - caring for disabled child - people involved in your childs care. I found it very helpful even tho I'm lucky to have good support from the hospital. HTH

Thanks. I already get DLA for her. When she was in PICU at Evalina last year, one of the mum's told me about it and fortunately she was awarded it, however it's only for 3 years so I will have to re-apply.

Singandsign dvds a terrific way to get signing up and running.

Also look at Makaton site for resources and training.

Get cracking and while you are at it, ring yuor salt dept. and chivvy them along. Waiting lists should not be so long anymore. In my dept. time limit is 12 weeks.

For portage, contact your local child development centre (maybe your SALT is based there) or local authority special needs department (I say this because our portage worker is based at the child development centre but is employed by the local authority).
What I would like to recommend is a website that explains the whole statementing procedure in detail, but I don't know of one. However, is there a support group for people with your DD's condition--it may be you can get all your answers from people who've been through statementing? Alternatively, it's the local authority again.
Best wishes
Arabica