Expressive Speech - Feel Totally Alone Now, Can Anyone chat Please?

[maxybrown]

OK, firstly apologies because I don't even know if I should be on here - all I know is that everywhere else i feel like I don't fit, because if one more person tells me "don't worry he'll be fine", I will explode So am hoping that someone will come along that can/will chat to me and even have some things to share.

Ok as brief as I can.....

DS is almost 2.9. He is very happy, bright smiley chappy. He walked at 10 months very easily etc etc and met all other milestones before or on target. He is very independant, very loving and caring. he loves beng with people and hates people leaving. I do not think he is Autistic, though he is def not the normal 2 year old either. For example, one of his favourite things to watch is War of the Worlds stage show dvd. He remembers most things after being told them once. His understanding is fantastic and his play skills are brilliant. he shows a lot of empathy for others. he offers eye contact - prob more than most 2 year olds etc etc.

He has never once in his life put something into his mouth that he shouldn't have done - as a very young curious toddler I could have left him alone with a pile of marbles or coins knowing that he would not have put them into his mouth - because marbles were for playing with and coins were for shops and money boxes.

Anyway, he can't really talk. he cannot join words togther at all. he would never attempt to repeat a word after you. he speaks or does not. he is under SALT already, has had full hearing test and full oral examination - all clear. I think SALT are unsure what to do with him, his receptive speech is brilliant and the SALT sessions were not geared for him at all. They want his name to go down for our local speech unit also. he is taking part in an observation group at the university where they are conducting an "experiment" (for want of a better word sorry) on children who are not talking and seeing if it is linked to personality etc. Next week he will have an indepth speech assessment that even SALT don't offer, as part of this observation group.

But basically i really really am at my wits end I feel like screaming crying.........there is lots more I could say and things I have surely missed.

I just feel like I am drfiting out to sea but yet hope I do not sound too pathetic

Thanks justabout........where is this thread of which you speak please? He is definitely not dyspraxic tough either.

thanks....I have been kind of burying my head in the sand as it is quite obvious he is not ticking any of their boxes but no one seems to listen anyway so yes, sure you are right. We just have no spare money at all, otherwise i would have enrolled him in Nursery for a couple of sessions to see if that helped.

Both DH and I work with children (SAHM at the min) and so have seen wide variety over the years.

Oh and I have just found the ICAN website tonight from another thread from SN, so thank you

Maxybrown, you don't sound at all pathetic. It can be a frustrating task to track down the right kind of support for your child.

Is there a Children's Development Centre in your area? My DS1 had a 12 week place in a development nursery which was free - my HV referred him and this was prior to dx. It can be very difficult to find out what services there are locally so may be worth getting in touch with your local Sure Start Centre - I have visits from a Family Support Worker and she is both fab and knowledgable.

My DS1 never mouthed anything as a baby/toddler and when we had a Sensory Assessment by an Occupational Therapist she said he was over-sensitive in his mouth - weaning onto solids was also a total nightmare hard work.

I hope the assessment next week brings you some answers or a pathway to some appropriate help.

Thank you, i feel so blardy useless. The lady who is doing the assessment has given me details of a place that we can go to one afternoon a week, which is held at a nursery but they have afternoon sessions where you can go along - lots of children apparently with various disabilities, some with none etc. There is a waiting list but she was hopeful that if I mentioned her name and that he is already under SALT they would bump him up as it is only for up to age 3 and he will be 3 in Septmeber.

My local sure start were rubbish I have to say. they have loads going on and it is all for under 2's

DS is very fussy with food but has improved though weening was no trouble. he just doesn't seem to fit in a box and now I am sat her in ashamed tears after reading the thread on dyspraxic/speech issues as I just feel like we are a bit........weird I have never even met my health visitor - ever would you believe. I feel failed by the "system" and a bit useless - sorry i am not usually such a negative person.

you poor love, why are you feeling so bad after reading the dyspraxic thread? I had lots of HV contact for various reasons when DS was very little, HV was judgmental and undermining, you weren't missing out much, and HV missed DS's language delay when I went when he was 2.....

it is hard having a pre-schooler with these sort of language issues, many of us on here do understand, either because our kids have speech/language in isolation or as part of other conditions, we cant offer real life support, but there is virtual tea and biscuits, laughter and tears aplenty.

I think the system can drive THE most positive person nuts when it doesn't work. The Sure Start centre should have family support workers who will come and see you - I haven't gone to most of the stuff they run at the actual centres, as they have little running around room and I have 2 preschool boys who like to run around.

I'm sure no one on the speech issue thread would want you shedding tears. You have genuine concerns about your son and you want to help him.

Right, my next thought is there should be an Early Support Team somewhere in your area- part of the Every Child Matters doo-dah. Ring your local council? Also worth enquiring if there is Portage in your area - sadly it doesn't exisit in the county I live in but I believe most areas do have it. www.portage.org.uk/

I have found surestarts varied dramatically around my city, from the fab to the useless, so if you are in a city area, might be useful to see what's on in other areas centres.

btw it really is v. good that his understanding of language and imaginative play are so good.

Oh yes I meant to say your son has some very good skills there already.

I also think I should win an award for mentioning the word run so many times in a sentence!

oh god - please don't apologize justabout, you were trying to help me. I think veryone seemed further on than me or had very specific problems......maybe my DS has and we just don't know it. I will look into all of the other things suggested thank you. I feel a right arse now

They did the receptive test on him 2 weeks ago (forgive me i am being a bit useless with the name of it and I should know) she didn't really have any concerns but wanted to have another box ticked. To begin with she was saying...hmm, we wouldn't nrmally expect to see that before 3. She could have tested him a year ago on these and he would have been able to do it. She did the diff coloured pencil and size blah blah blah, put white buttons in cup, did few more things then take 2 buttons out of the cup, (there were 3) he just takes 2 instantly and so on and so on. says he's advanced......tots up his score...waiting waiting. Then closes the book really quickly and says "oh yes he's exactly where he should be"......anyway......was very very weird and all happened very quickly.

Sorry for going on but thank you thank you thank you for help and support. I will be contacting people!

There is a portage centre 20 min walk away from me

Have you got his name down for a nursery/preschool? May be worth speaking to their SENCo (special educational Needs co-ordinator) to a) sound them out and b) find out if you need to get anything in place before he starts. e.g. if it is a large setting do you think he would need any 1:1? If so, it can take a while for them to get the funding in place and (depending on the area) your son may need to be assessed by the Educational Psychologist beforehand and there is likely to be a waiting list.

I am a teaching assistant normally.........so used to schooling issues. No, I do not think he would need to be seen by an Ed Psych as would not think he would need 1 to 1 either.......he is very very able and confident and don't imagine he would allow himself to miss out on things......I can imagine he will "speak up for himself" ha.....sorry, throwing my own puns in....

He is due to go to local primary school nursery in January each afternoon. But think I need to try and contact someone about it all.

I am annoyed with myself because I feel I should know better........we know no one locally at all so quite insular in a way - though I am not at all shy! But at the same time I also don't want to be an annoying parent.

I know I know.

But after being caught up in the cloud of "oh you're not worried are you? Don't be silly, he'll be fine" I am just starting to think hang on a minute........time's pushing on.

Primary schools round here break up tomorrow for 2 weeks annoyingly, will contact portage etc though tomorrow.

I can see where they are coming from. Our understanding of Autistic Spectrum Conditions has changed dramatically over the last 30 years and many children would no longer meet these rather narrow criteria. Some may show some of the features of autism but not all. Language development may be impaired and these kids are sometimes referred to as having a developmental dysphasia (not helpful because it's just a posh way of saying, the child can't speak)It is argued that rather than thinking in terms of rigid diagnostic categories, we should recognise that the core syndrome of autism can manifest itself as milder forms of the condition in which language or non-verbal behaviour may be disproportionately impaired. In essence they simply don't know and while they are scratching their heads you arfe pulling your hair out. Have you considered asking your GP to refer you to a primary care counsellor or a specialist therapist. The road ahead is probably likely to be long, bumpy and tedious. You will need to as Robust as possible to provide him with the love and support he will need. Talk to me again sometime maybe?

I will contact GP he is lovely. I feel all panicky all of a sudden (I am not a panicker) and feel someone needs screaming at but just not sure who - and whay are they (salt) all so bloody uncontactable.........grrrrrrrr.

I was also going down for makaton course, but got letter through the other day and stupid stupid me had for some unkown reason presumed it would be an evening thing, but it's 2 whole days and so have no one at all to have DS. Been doing it myself with him though, he really enjoys it too

Don't be annoyed with yourself - your son met all the physical milestones, has (from the SALT assessment of his receptive language) advanced skills, is happy, sociable etc -- I know I would have been on the "wait and see" side for the expressive language to kick in. In a lot of areas you could well have still been waiting for a SALT assessment.

You're best bet is to put things in writing to the SALT dept - a polite but firm request for another appt/action plan/summary/explanation etc.

Thank you. I have just said the very same thing to DH that in most areas he probably wouldn't have been seen yet.

We are back at SALT in July anyway - she does make appointments with me, just don't feel like we get anywhere iyswim? Ungrateful sod aren't I?

maxybrown - if it's any consolation my dd2 (3.3)is completely non-verbal & after 18 mths hard slog,we still have no dx & she has made zero progress.All the profs can say is 'she is a puzzle'.
I sympathise,sorry I don't have any advice as I myself am flailing in the dark!!