Can I Have Some Help Please? (Long sorry)

[maxybrown]

Ok, so bit of background - DS aged 3 and a half. Severe speech delay. Very bright, very particular, has some "quirks". Been under SALT for 16 months, has had one to one SALT since Sept and has been coming on leaps and bounds, (still way behind, prob sounds like an 18 month old, maybe) she is lovely and all is good there

Go back a year, been sent for millions of tests as he had a very very odd constant nasaly sound and no words, so had hearing tests, mouth and throat checked out, loads of proffesionals blah blah. Last prof (cleft lip and palette specialist) recommended he see a paediatrician. See him, he thinks it is all very strange, sends him for testing for epilepsy (clear) and denies that it is possibly verbal dyspraxia as he reckons you don;t usually see it in isolation (hmmm, ok) but he was very charming, very nice (had my Mum with me and he had a student) played with DS for 5 mins on floor, DS not attempting to talk to him or anything just the paed chatting to him a little.

See paed again for check up couple of weeks ago, went in on my own, no student. He was very dismissive, not so nice and sat with DS for 2 mins. I eplxain how well SALT going, ask him if he has the report the SALT sent him, yes he says (?) I then say I have a few things wanted to discuss, have written them dowwn. (these are his quirks and the OCD type behaviour and the very obvious sensory issues) as I say that sentence he jumps up and quickly says "If you're going to ask me if he's Autistic, he isn't" I was a bit taken aback and I said " No I wasn't at all actually" mention all my issues and now feel like a prize twat tbh and again he is dismissive and says it is just him trying to have power because he has struggled with his speech but we'll kep an eye on the sensory issues see you in 6 months then that'll be the last time WTH?! I mean I don't care if we don't see him again - SALT not impressed with letter he wrote either, plus he addressed it to wrong name entirely at SALT and they sent a copy to Health Visitor - but not MINE, no, some other random place i have never lived in! I can't even be arsed complaining.

So, what is my point? I feel unlistened to, talked down to and going backwards.

DS due to be assessed for speech unit after Easter, am worried as he has progressed with SALT they will not offer him a place and I worry for him at mainstream - he cannot say his own name and lots of the words coming now are echoing, he cannot say them independandtly. But he is high priority atm - I guess I don't want to fall here either and hope that I manage to put his case across well for the unit as feel him spending his nursery year there would be so beneficial. He cannot get any words out with any speed and if he manages a 4 word sentence, it is often with a gap between each word and he often has to re start the sentence 3 times or so before he gets it all out - so he needs a lot of patience. he is also getting more frustrated than ever as he has a go at words and we don't understand and then he gets crss and won;t repeat. But as I said today, at the moment he has me one to one helping him and he has all of my attention - obviously he is not going to have this at school, but I worry he will be thrown into mainstream of 30 and disappear. he is VERY good at occupying himself, can play for 2 hours plus on his own if I let him, excellent play skills and has always had these, even at 18 months/2, so if someone can't understand him, he'll take himself off and get on with it, iyswim?

I feel like we are hanging and am cross because the bloody paed, that I DID NOT ASK TO BLOODY WELL SEE, treated me like I was wasting his time - we were SENT THERE!! And I am annoyed because I did not say this to him and normally I would.

I am normally teaching assistant for primary and DH is a teacher so we are not wet behind the ears as it were. But boy do I feel like I am stuck in mid air at the minute - and sorry this is probably just a rant.

What I do know is that I have 14 hours of trying to translate/help DS speak alone and I try my best and no matter what the paed says, I am the one with him all day and pinning him down to clean his teeth and get him washed (no ashamadly we do not do it every day) he tells me the water hurts his head and teeth cleaning he looks like I am putting needes into him - really! I am not soft and my DS is angel. he hardly eats and very very very fussy and odd with food also.

Sorry rant over - to sum up my essay, how do you get professionals to listen? Apologies to those, in advance, who deal with much more crap than me.

im sorry to say your situation isnt that new :(
Proffessional have bad days and they also tend to be worse when your alone. The key is finding a proffessinal you trust, knows you well and bring them along if possible. I currently have a great load of proffessionals around me but not without having to deal with craps ones but also without standing my ground (finally after 6 years can get across wants without crying!)
Ask to see a different paed next time and take someone with you.
I would still say that if the SALT has suggested a unit, its likely he will get in, if not be prepared to fight for it. Speak to SALT and get her to put a strong case forward.

I would strongly suggest an OT vist, either private or via GP for the sensory issues as these can have a huge impact on his ability to learn ect.

I dont know the area your in but Im sure someone here can recommend one.
HTH

so sorry you are having such a bad time atm ask for a different paed if they say no what aabout being refered to a diff clinic at a diff hospital depends where you are you sound desperate for a break do you have friends and family near you i know its hard and your both working is there a way yr DH can take a day off to see the paed next time with you as together you can be much more assertive and hopefully MAKE them listen also ask to see the OT.
concerning the washing n teeth my ds says the same he says it hurts and i used to force him now i generally try and mainly get him to do his teeth and awful i know but i have to remind him of his nanny having false teeth this sometimes works as he doesnt like that idea or the offer of a treat later but some days yes he goes in to school without doing either as if i force him and am negative at the begining of the day hes in a mood all day then what i do is later after school try and get him in a bath with epson salts (relaing) he likes playing in the bath so i have to sit near by he wont let me in the bathroom as hes 10 and he says im not a baby but he likes wearing his swimming goggles in the water n play diving to the bottom to get tiny objects out prob not suitable as yr ds younger but i used to give him all his toys (litterally a toybos full) in the bathroom and soap crayons and sticky letters and that soap thats like shaving cream in a can he loved that just to make bathtime like playtime n not washing time as much as possible, sorry if youve already tried all these but HTH

lol that should read epsom salts (relaxing) im awful typing

Oh Maxy :( I never realised you were having it so bad.

Definitely ask to change paeds, yours sounds charming .

OT will help with sensory issues. We had a rough time with DS2 hating bath time, gradually it has gotten better, but was hard work. He still hates having his hair washed, goodness knows what the next door neighbours must think.

Have you looked on the Dyspraxia website? Some of the things your DS does might also be relating to dyspraxia.

Hi 5in

phew! Sorry all manic time atm.. Have very ill FIL now so DH not here, all unexected too.

I am going to ask about OT, thank you. I fear sometimes people think I am making it up, because DS is SO good - he is charming, everyone loves him and it's not like he plays up just for me (not that I'd stand for it, old witch that i am) he is really really good for me, he just has some issues for sure. He tells me the water hurts his head, as does hair brush. Fortunately he seems to have teeth like dh (steel) and not mine (butterfly wings) but I di let him have a go himself but I know he finds even that hideous. Foods or anything near his mouth he is so tentative of and certain 5in that these are all dyspraxia related in some way - with regards to his mouth anyway.

He will reluctantly sit in a bath, then enjoys it once in as long as he is not washed (tough) but it is so traumatic and I really am not soft - it's just so bloody tiring! Sometimes, he is screaming that loudly - I am with you 5in, goodness knows what the neighbours think. You would think I was beating him - and that is with me pre warning him, he responds better to EVERYTHING if pre warned likes to know what's what and when.

I was so narked with the paed as he was LOVELY the first time we met him and I felt really positive, but this time i just felt stupid.

I said to SALT this week that it's all well and good him making an assessment of him based on 2 minute of floor time with him, but I have him 24 hours a day 7 days a week and I am not bloody stupid!

Then don't you just feel like a monaing groaning on and on parent that seems to just WANT something wrong with their child

the thing is, if some streetwise with it kids takes the mick out of him at school because of his speech, I would worry, as he is very very aware of himself yet at the same time exptremely confident.

Sorry gone on again, can you tell I donlt get out much? and why is it, we meet loads of poeple online but no one with these issues ever seem to live near us aaaarrrgggh! It is hard to make poeple undertsand at times, and now they see this boy that couldn't talk at all, to what sounds brilliant (in comparison) and then you get all the same "oh see i told you it would come"...............yawn, yeah yeah.

Woman who runs toddler ggroup said oh bet it's much easier now, no frustration and I said no, it's worse as i can't understand half of what he says to me........................everybody the expert eh? and he still can't say his own name in any way shape or form. he calls himself babba and I say but your name's James and he says no Babba - but he responds to his name, I just think he is VERY aware that he can say nothing that sounds like James so easier to stick with Babba, for now.

DS3 refers to himself as Babba, despite answering to his name and knowing and saying everyone elses .

DS2 didn't start talking until he was 3.5 and even then it was baby talk. He is now 5.5 and his talking is so much better. He went to an ASD unit like the one your DS will be going to, and having a SALT there really did help him loads.

Sorry to hear about your FIL, hope he gets better soon.

Where abouts are you - if you can get to London I highly recommend you ask your GP to refer you to the Nuffield hearing and speech centre for the speech issues to be looked at. In doing that they are incredibly thorough and will look at all aspects of his development and you will get a thorough report. For DD (now 6) it led to their psychologist then seeing her for a separate appointment and getting some very interesting reading on the report. We now have to face our also awful paed who was totally dismissive of any problems 2 years ago, but this time we have "amunition" from this report. I can't see how she can ignore our concerns now that we have other professional opinion on our side. If you go be prepared for a very full on appointment - we were there about 2 hours for each one! I am so pleased we went to the trouble of going there though.

You might want to print this off to give to the doctor (or speech therapist) about making the referral.

Really can't help much Maxy, but I do remember being told to be positive with any attempt at speech, and to just be a role model. eg, If he says "babba" and you know he means James, just go with it but role model the correct sound. eg say " Yes, you're James, good boy James." Or "Babba's car" "Well done, that's James' car, that's right." He can't say James yet but he is trying to communicate, which , believe me is sometimes half the battle.

I know my examples sound patronising and babyish and he's probably got better comprehension that I realise, but the concept is the same. Don't correct him, just role model the proper pronounciation, in a positive way.

Do get the Hanen book "It takes two to talk" from Wimslow press. Expensive, but loads of people on here will recommend it. Basically speech therapy to fit in at home. Ask your SALT if she recommends the Hanen approach. My DS has got ASD so I had the ASD specific version, 'More than words", but your DS would benefit from either. HTH

Have you applied for statutory assessment? Will you need a statement for the speech unit?
Ok so this paed won't support you but the SALT sounds supportive
and statutory assessment can be a way of getting assessments eg by OT, EP etc sorted out and because there is a statutory timescale it tends to make things happen faster.
Our paed is lovely but does not actually do anything as its all therapy or education nor medical so we just sit round for a chat every 6 months
You might also get to see EP or CAMHS as part of SA which might address the OCD issues.

Thanks again!

No he does not need statement for unit - have officailly checked that out and it is not something our area operate - have had that from the unit themselves.

The SALT at the unit laughed when I told her what paed said about dyspraxia too - and I also knew that he was wrong, but when they come out with something that you KNOW is wrong, it doesn't give you much confidence in them

Ellen, I never correct him - I understand where you are coming from though thank you - through my work I have spent a lot of tme using SALT programmes believe it or not, so already had a head start way ahead most other job parents with no previous experience - as it were! Still hard when it's your own though.

I know he will get no Nuffield support - have been told that is too expensive, don't think we get offered it in our area. But tbh, one to one SALT, who is lovely since september every week has been a great service and I know she has worked using a milder version of what Nuffield offer. We have also been using cued articulation and i contacted the lady who wrote that and she's been lovely and even sent me a book!

I would love to have DH come with me to see paed but each time they change the appt - last time it was 3 times with short notice and as DH is a teacher and can't just book time off, it is hard for him to keep asking for diff dates/times off - but we will see!!

I agree about the particular confidence with his name saying too!