Salt etc. Starlight's Baby DS. Please help.

[StarlightMcKenzie]

For those that know a bit about my story please help me not to get all shakey over this.

Baby DS has no ASD. Confident and certain in that. However, he does have articulation issues and lack of words. Yes, he is 17 months and I know this.

I also know he has posterior tongue tie (confirmed by LLL tongue-tie specialist but denied by GP and HV) and grade 4 upper lip tie (not denied but significance denied).

I have no idea what, if anything I need to be doing. I think probably I need to build a case for surgery. Possibly I need evidence from SALT.

Now I have called HV. NN phoned me back wanting to visit. I ask why she says to observe and give tips. I say no tips thanks, what next? She says wait until 2.5 development check. I said no thanks to waiting, what next? She said HV come to house to do missing 1 year developmental check. I said what for? She said because they like to do them.

So I asked how that would address issue and she said it would record my concerns but then wait and see until 2.5 developmental check. I asked why we'd have to wait and got the response that they like to do it just before preschool so they are where they need to be to learn.

I asked if she believed no learning could occur before preschool then?

We ended it with her giving up and telling me that a HV would call me tomorrow to book an appointment.

I am not happy with the challenging nature of my side of the phone call. I don't know how to stop it. I didn't attend the 1 year check because I hate their service for the way they have repeatedly let us down, even in baby Ds' early days, forgetting the whole thing with Ds.

There is no self-referral to SALT, though I'm not sure if that would be the right place anyway.

Any kicking into shape will be welcome as well as flowers. I finished the phone all in tears.

ds1 had his tongue tie snipped when he had just turned 2. SALT had confirmed his speech was developing normally. However my now ex h asked the consultant to snip it anyway (ex h still has tongue tie himself and thought it had caused difficulties). The consultant agreed and did the surgery, just insisted on waiting until he had turned 2.

Ah, it's okay. I do know it isn't ASD.

His one intelligible word is 'erk' which he says about everything with an extended index finger, whilst checking I've seen. He won't stop saying 'erk' until I have acknowledge I've seen whatever it is.

But I still know that something isn't right.

sorry - posted too early. I would ask for a referral to paed via your gp. ds1 had his done at alder hay.

I also felt I couldn't go there again and it may of course turn out that your ds issues are not asd related. If they are then you will be able to do it. I couldn't deal with it for several months and I watched dd for a long time so I felt sure in my own mind before I sought out the profs. I suppose whoever you see will raise the question of asd and will want to rule it out as well as looking at other reasons for lack of speech. Seeing or not seeing these profs will not change whether your ds does or doesn't have an issue. Maybe you are not ready for the intrusive nature of these assessments. I wasn't for a while. I had to force myself to do it. I disliked the lack of control and I also quite naturally had to go through all those awful emotions all over again.

'Erk' is good. It's his attempt at 'look' isn't it? I think the biggest concerns are when there are no consonant sounds. That doesn't mean you shouldn't be concerned. Just that consonants are good.

That's the thing though. He doesn't have others, only 'b'.

He doesn't have 'd' or 'm' which you would have expected way back. He's never said 'o' either though no idea if he is supposed to.

But yes. He's attempting 'look'. He often stands on the sofa and shouts it over and over until I look and then he kind of throws himself down into a seating position laughing.

Erk would be classed as a 'back sound'. Definitely need to see a SALT. He should be attempting front sounds - M, f, p, d. Ck and Gg are back sounds and are hard habits.

Hard habits?

So I guess I'm saying I'm not concerned about his communication, just his speech for the moment.

Oh yes.

Lol. I meant what does 'hard habits' mean?

It's all fuzzy to me. DD1 had a anterior tongue tie. Fortunately the HV gave me the number for someone private but the nurse answered the phone and invited me to a BF cafe where they just happened to do snips (at the hospital). Her TT was 80% but snipped at 3 days.

Her articulation is still very poor though. I think it must be her brain or muscle tone or something. She is starting to use cued articulation at school but progress is slow.

Star you can do this as you have no choice. I keep saying "I can't go there again"
But i am anyway. I can't be ignored again is what you mean i think. I can raise another sn kid because I'm beginning to be a expert ( I hope one day).

What's wrong with going back to basics. Leave emotion at the gp door. "With ds my hv did not listen and made the route to getting the help he needed much harder than it had to be, therefore I would like you to refer so I don't have to repeat that very upsetting experience".

I told me pead that school will not listen to me, they want exactly the same info - from your phd lips. Why the school are arses and how that makes me feel was left unsaid. Just the facts. Mrs pead wants ds to see a ed phyc - ask them yourself as they can't listen to me.

I don't think we are allowed to hug but ((((hugs)))) and honks

So that goes back to the articulation issues. My DD had terrible back sounds. Took years of speech therapy. She's nearly 14 and we still do daily speech therapy.

I would say that the best thing that you can do is to practice front sounds. Lots of modelling back. Make it fun. Mmmmmmm motorbike, fffffff over a feather, ppppp over a fake ELC candle, ddddd drumming. You've done ABA, this is a lot if the same principals. Positive modelling the sounds, lots of praise and reward.

Star for you. You have helped so many of us, hope it goes OK with the GP. Your baby DS sounds adorable

Thanks all. I think I've worked out why DH and I felt we could do it again. It's because we probably assumed ASD if anything and for that we could deal with it with very minimum professional involvement. We'd do all we needed to ourselves.

That doesn't extend to surgery. So now we have to 'engage', and as effectively as we can, with people we'd really rather not.

Hi Starlight, sorry I haven't had time to read through the whole thread, but I want to reply before I shoot off to work. Apologies if others have said the same thing, or I've missed the point. I'm an SLT.

It sounds as though you have a good case for considering a tongue tie release op. Or at least to get a professional opinion. You need to find a surgeon who is specialised and interested in this - it varies hugely around the country. Are you near Southampton at all? There is a excellent team there. If you're not nearby, it might even be worth getting in touch with them for some initial advice, and they could maybe suggest another team.

SALT will be able to refer you to a surgical team, but it's worth doing some research first to find out if the team in your area has a particular interest. There is a stupid amount of controversy about whether tongue ties cause problems for children, but my feeling would be that if there is already a concern about speech, then it's an indication you should be thinking about the tongue tie. Obviously can't say yes/no over the internet without meeting a child and assessing! Will pop back later when home from work...

Star the ONLY reason DS did as well as he did in London was that I totally ignored borough boundaries from day one, unless and until explicitly told I couldn't access a service due to my post code .

It's VERY easy to do with under 5's. Once they hit school age the funding gates clamp down like the gates of a castle drawbridge. It was only when DS started school I ran into problems accessing the help he needed. It's very easy to pop into a children's centre in another area with a mate for a cuppa and while there access the resident visiting SALT or other expert. I turned it into a fine art lol!

Blimey Boch, I could be a Tongue Tie Tourist......

I think the HV tried to call today. If it is the one who accosted me outside the GP when I was signing up there she'll be alright. She tried to get my details there and then and I told her I didn't want to be rude but her service (in another la) had caused us so much stress with their refusal to take ds' issues seriously we'd rather not.

She suggested we give her a try, she'd not visit but just call us no more that once every 3-6 months to ask if there is anything she can do to help and she did, and I said I'd like a hearing test and we got the appointment the next day. But that was before baby was born and various reorganisation things, and dd has now turned 5.

Thank you singysongy,

I'm not very close to Southampton though if they accept out of area referrals I could be. Following your lead though gets me to Harley St and a £400 fee for lasering upper lip tie and tongue tie. I coukd have just a consultation for £90.

It really sounds like we need to do it but that will probably take us several months to save up for. I have spoken to them this morning and they offered me the operation next Thursday. Great, but though I'm pretty confident it's what we need I'm not sure I trust a pathway like that.

Are you talking about Mervyn Griffiths at Southampton? That's who we were referred to, although the actual snip was done in the BF clinic in the end, so we didn't need to see him.

Hi Star, my older child had/has tongue tie and his speech was very delayed. He totally caught up around 3.5, after lots of HV/SALT involvement, IEPs at play group etc. The whole experience left me a bit traumatised I think, so when little one showed signs of speech delay I held back longer. I absolutely wasn't going through all that shit again just to be told everything's fine and isn't the world wonderful. Unfortunately, this time something was up and in fact he did have ASD, is at special school etc. It's a different scenario but I totally get where you are coming from, you don't want all that interference and judgey shit in your personal space again and being caught up in the middle of game playing by professionals. I still don't. But with hindsight, life could have been better a bit quicker. Or maybe I would have gone through more crap for longer. Just another thought, have you considered getting a private SALT to take a look at him? You might feel a bit more in control. I totally applaud you for having another child. I chose not to for the simple reason I couldn't go there again. Not the child but all the other stuff.

No, Malcolm Levinkind. But I started with your guy and king of followed leads to my guy. Both dentists by original training.

Thanks Licking. I'm calming down a bit. Do you think I coukd just say to the HV I don't want all the interference and judgey shit in my personal space and passing buck games about who funds what. I think it's a pretty clear description and they can't deny it's what it is like surely?

I could ask them to find out which local boroughs have drop in SALT services. They'd have to refer me to theirs then as they received a very poor safeguarding inspection result and must rather I staying in-borough where they could follow-up.

Ah, just thinking aloud.