ds with speech delay

[boocha]

Hi
This is my first time posting on MN and I am really looking for some help and advice. My ds is 3 1/2 and is having problems with his speech development. He was initially referred to the CDC exactly 1 year ago as he had barely any words and his understanding was poor. A 17 week assesment was carried out by a speech therepist and ed phsc, this included assessments at home,in nursery and at cdc. It was decided that they were not able to dx at that time and so here we are a year later and assessments are still going on.
He has improved a lot over the past year, behavior wise he has never given us any problems and potty training day and night was very easy and fast. He has in the past had quite severe glue ear in both ears however this has now cleared up after 3 months on a small dose of antibiotics during the summer.
The problems he has are that he doesnt seem to understand more complex speech i.e. "ds, were you playing with george today?" he says "playing with george, Yes" However if we ask him "who were you playing with today?" he wouldnt be able to answer. It is as if he cant answer open questions, IYKWIM.
He didnt understand the concept of christmas but knows who santa is. He chatters away non stop all day but can sometimes be quite repetitive. He also has fasinations that he goes through, at the moment it is disneys cars.And wants to take a dvd case everywhere with him.
We are so worried about him because he starts reception in Sep and he is a July birthday so he will have only just turned 4 when he starts.
He goes to nursey every morning and has 1 3/4 hours support every day. Nursey says he is a delight but obviusly delayed with his communication. He loves going.
We are so fed up not knowing and sometimes feel that cdc are making a mountain out of a mole hill however we are grateful for the support they have given. Every assessment he has never seems to go well as more often than not he is not really interested, I still dont think they have true picture of him.
Oh and also he has no interest at all in holding a pen etc and his concentration is not that good. He cannot put own coat on but feeds himself well.
I have to go but if anybody has any advice or similar exp I would be grateful to hear them as the worry is really getting me down. He has another ass this morning at nursey so Im goig to collect him and see how it went.(am dreading it!!)

Would fully agree with Socci's response.

My son was diagnosed with a speech delay and we went on to get a Statement for his needs at school.

Thanks for your replies
Ds currently has funding in place at nursery and luckily it is something that I am not worried about as the team that are assessing him have said that if he needs it there will never be a problem with funding,statement etc. We have a funding review at the end of this month so in this respect we are very lucky.
The nursery teacher was telling me this morning that his assessment today with the ed phyc went very well and she was amazed at the improvement in ds. She observed him with other children and did some 1 to 1 with him, she said it was only when the language got more complex that he struggled.
To be honest, I just dont think that they know yet what to dx him with and we are of the opinion that as long as he gets the support he needs then we would rather that they dont label him unnessassarily.
Do you think that I am in denial? Sometimes I think that I spend too much time trying to convince myself that he is fine.

boocha, your DS sounds a bit like mine at 3.5. Mine is nearly 5 now and in reception. He wasn't given a statement for school & has received no extra help. Since starting school he has "blossomed" but this is a risk I would prefer not to have taken as I've had many sleepless nights. We think his problem is a language one as he has no trouble speaking but it is clear he doesn't always understand more complex things until he becomes familiar with them. His teacher thinks he is a bit lost sometimes especially with change and could do with some help sometimes. Unfortunately, he doesn't get extra help for various reasons. We've been told we will have to go privately if we want it but I'm pretty clueless about what to do and as I've just had another baby I'm a bit occupied with that at the moment. We are fortunate that he seems to be making enormous progress on his own and with encouragement at home.
I tell myself (as everyone else who's seen him does) that he will be fine but then I lie awake at night worrying. It sounds like you will get a statement/funding for extra help if necessary for your DS and personally I'd take it, it can't do any harm.
I'd be interested to hear what the outcome is for your DS and if you get a dx, if any. Good luck.

Hi Boocha,

Re your comment:-
"the team that are assessing him have said that if he needs it there will never be a problem with funding,statement etc".

Tell them to put that in writing!. What is said and what is actually done are two very different things.....Sorry to be cynical but have been there. My feeling is that your DS will go into school with no extra support worth speaking of behind him unless you go after it now.

My son had preschool funding (he had 1 to 1) but no help was given to us with regards to applying for a Statement. We did it ourselves and eventually got it after a struggle (that started in year 1).

He will certainly get support in nursery but school is a different kettle of fish altogether. School may well decide just to put your DS on School action plus and see how he progresses. Not ideal at all.

Has your DS seen a SALT (speech and language therapist) to date?.

Just a quick update,
ds was dx'd with a specific language impairment by the social and communication assessment team last week. They felt that although he does show some traits of asd, there arent enough to warrant that dx at this time and as his language hopefully improves then they will fall away.
The salt recommended that he goes to a speech and lang unit attached to a ms school for a couple of years(not very near where we live) but we have decided after meeting with the headmaster/senco of our local school (where dd attends) to send him there.
A statement has been applyed for (is that the right way to put it!!!!??) by the ed psch with reports from salt, nursery told me today that they have been informed that the lea panel? are meeting on monday.
I hope that we are doing the right thing in not trying the unit but just feel that I wanted to give other school a go.
Ds is really driving me mad at the moment and it is so frustrating not to be able to have a conversation with him.His concentration at home is awful, unless its that bloody cars film or spongebob squarepants then he isnt interested, how the hell will he cope in school?

Hi boocha - I missed your first post. My son has autism, fairly mild and he is high functioning. His speech was very limited at age 3 and he only started communicating properly at age 4 but it was slow. He is now 7 and you'd not know he had a problem at all. He had some speech therapy although the sessions were very late due to the shortage of therapists here. Much of it was just him learning in his own time. 3.5 is still very young so don't worry. I guess you've been given info on how to communicate with him - use short simple sentences etc and maybe some visual stuff may help him tooo.

Hi eulalia
Great to hear how well your son is now doing. does/did he have any support in school?
Dh and I keep saying that he is still young and time is what is needed but it is very hard when all around are other kids ds's age chatttering away, makes me feel very sad (and jealous )
Ds has had speech therapy for over a year now and to be honest he isnt getting much out of it. the biggest improvement in his speech was when he started nursery last september. Did you find that when your ds started school that he coped ok??
Thanks for responding.

Are you writing about my ds????? Also a July baby, with severe speech delay- although he has ASD as well

Your son doesn't have to start school in July- don't think DS3 will. They have legally to start the term after they turn 5. For us, that means a September 2008 start. This owuld probably be in year one, but whether that is a aproblem depends on how much you can do at home and how the school works- if it has a play orientated reception, for example, it will be far easier if they begin academic stuff on day 1.

Communications unit is an option for us too, depneding on PAed decision / LEA decision- so far we have battled like Hell with the LEA and they just blank us, you sound as if you are much more fortunate.

have yu spoken to AFASIC?

Hi peachyclair
Yes, we have thought about delaying school until yr1 but I worry about him missing out on all the other kids getting to know one another. We asked about deferring him until next year and then starting in reception but everyone we have asked has just said "no way"
The cdc has said with regards to asd that we could go back to them at any time if we felt that he wasnt progressing and still had some of his other issues (obsessions etc)
I will need to look up AFASIC, what is it?

Its a charity for speech problems- hang on I will get a link

Also we are worried that if we wait till 2008 til he starts school in yr1 there wouldnt be a place for him as I dont think that they will hold a place for him. Do you know?

here

hth

Thanks a lot, I will take a look.

They would have to find him a palce somewhere, that the LEA responsibility. We're OK with that one- apart from the fact DS really needs SN school but his DX won't be done in time (there are no SALT SN in Gwent!!! how rubbish is that?) we live in a specialised dedicated catchment where they have to offer us a palce because of Church funding, though we prefer the not-so-popular but friendly school a few miles away anyhow- so on a winner on that one!

I have suggested other things- a repeat of nursery, year in a SN nursery, SN school palce, part time MS with 1 - 1 at 100%, but the home ed is our plan if we have to fight which we will.

omg its all just such a ball ache at times isnt it. To be honest at times I think I have my head in the sand and just keep thinking he'll be fine, he'll be fine.I am still not 100% about him going to ms, I just reaally want him to be like the other kids. but I know deep down that school is going to be so much different an experience for ds than it is for dd.
Thank god the cdc and others involved have been so helpful as my family just say "leave him alone ,he'll be allright, why all the fusss?"
However the best thing we ever did for ds when he was 20 months was to raise concerns with hv about him.
We have the option of speech unit for 1 year then into ms yr1, just dont know what to do.

Sorry for rambling

I know how frustrating it is boocha when you see all the other children chattering away. But I am amazed at my ds - at 3 he would just say single words often just out of context almost like he just liked the sound of them. He also did a lot of echolalia and would just repeat back the questions I asked him. Gradually he strung a few words together but would make up his own words as well which was confusing for awhile. He hardly spoke much at nursery at first but gradually was understandable when he started school at 5 (also July birthday). Yes he got support from the beginning and still gets it, not one-one all the time just when he needs it. MOst of the support is necessary to keep him focussed.

FWIW, just a thought, but if you send him to a language unit will they not just move him to the associated MS school if he improves? Whilst at MS they would have to apply for a place, wait for one (possibly with statementing which takes 6 months as a standard), and then to transsfer whole schools with the associated stress? That's one of the biggest worries we have for DS3, that is we agreed to MS, he would feel like a failure (and he would be labelled as one) if / when he had to transfer out.

BUT youa re the Mum, go with your gut instincts

What is it with July babies??? I too have a July '03 ds who I was concerned about his speech development, In september '05, I took him for a speech and language assessment, and they told me this expressive play was very good, and that his comprehension was fine for his age. However my concern was with his expressive language, at that time age 2yrs2mths he was still not joining words together, they told me I was worrying needlessly he would catch up no problem, but as I was concerned they would review in a year - that never happened.

His speech has developed, he now does join 2/3 words together. And as he had a short time with glue ear and hearing loss, I just put it down to that and tried to ignore it all. However with his sister being 15 month younger, she has normal speech and can hold a conversation on the phone, has 4/5 word sentances, and speaks clearly, understandable by all. Now this week, ds' playschool have expressed concern in his language abilities, apparently he is not interacting with the other children enough and they find him using non-sence speech at times too. When he gets excited or nervous, words are unintelligable, probrably not real words at all.

So having gone through all this, if you are still reading, please - what should I do?

Please any advice??? The speech and language assessment will not be for another 6 months or more, what should I do in the meantime?

Hi mum03, what I have done whilst DS is languishing on the NHS list is:
1)engage a private SALT (via the ASLTIP site) to assess and give me exercises for S to do (£150 fee for this - she has spent several hours with S either at home or nursery to do this).
2)phone up SALT department and ask if they have any classes/courses etc for parents to help speech, or failing that your nearest Surestart children's centre, in particular whether they run any "Hanen" courses - Hanen is an organisation from Canada that seems to be an international leader in dealing with speech delay, communication
3).if you have library story/rhyme times, try them out - they are good for encourage listening skills, turn taking etc, all useful for encouraging speech
4)I bought a copy of "It takes 2 to talk" by Ayola Manolson from ebay - £25 but I have found it very useful to give ideas about improving communication and speech.
5)speak to your HV in case she has any useful ideas/knowledge of local groups/classes etc.

Hi mum03, just started a Hanen course for my DS who is 3.5 (October birthday, luckily, so whole extra year to get him ready for school). One thing they told us to do was to "say it as he would if he could", so when DS says some one or two word utterance we repeat it for him as a whole sentence and he copies us. This has had dramatic results - e.g. today he said "more milk" and I said "how about a please". Blow me down, he then said "I would like some more milk please Mummy, thank you".