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.

I've never had to convince mine - I've always just told them who I want to see and why . You may just have to be dogmatic about it.
''My DS has always been a poor feeder. BF was torture and he was dx with TT. I know that there is a link between feeding and TT and I suspect that he may have a sub mucosal cleft palate as his speech is delayed and he has poor articulation. I think that it warrants investigation from a Cleft specialist so please can you get me a referral to see x surgeon at x hospital' (Does he have a nasal sound? Indicators of palate issues).

I'll email my Cleft SALT and ask her opinion. The Evalina have a Cleft Team I think.

info on clefts and specialist centres

If you want NHS referrals you will need to play the game and allow the assessments. This may mean they will want to rule out ASD. I was very resistant to both the development check and the ASD multi disciplinary assessment even though I was actually totally certain dd had ASD. I didnt want to waste my time and also found it a distressing and fairly useless process the first time round with ds. I agreed in the end to expedite the process and because I wanted a diagnosis so I could move forward with Stat assessment. I know you are confident that asd isnt the issue but the professionals will want to see this for themselves. I can totally understand your feelings but I think you will come up against more than one phone call like this. I also think the more you resist and appear to be 'challenging' the more profs will privately think you are in denial. Access to help for the tongue tie will probably only come when profs have satisfied themeselves that ASD isnt the cause of the lack of words.

Yes. I know cansu but I have no faith that they'd know autism if he systematically and overtly displayed the MCHAT red flags in the order they were presented. My Ds did this and the conclusion 'neurotic mother'.

So jumping through ASD assessments delivered by people who have no idea what it looks like but will likely conclude issues are caused by me, makes me anxious and defensive.

Star, I know how it feels (see DD2 as an eg.) but even if that were the case, you got through it with your DS1 and it became obvious that it wasn't a neurotic mother.

I've been 'neurotic' for a year now, with DD2. Finally, they are starting to do things. Finally they are starting to know there's something, I think.

You can do this. You can swallow that taste of disatisfaction and insult and look beyond it to see the goal.

The trouble is, anxious and defensive is even more likely to get me branded as neurotic or at least the cause of issues. I do know

I understand. I was very nervous about exposing myself and my family to the professionals who did nothing for ds, fobbed us off and generally were shit. In the end I asked to see a different pead and had an open and straight forward chat with her about what I disliked about the experience. I remember telling ehr that I knew dd had asd but I needed her agreement to do what needed to be done to help dd. I think trying to avoid the assessments and the Hv's etc will make you appear anxious and defensive. it's a vicious circle, but unless you ahve copious amonuts of cash to go private, is unavoidable to get to the help you need. The only way round these assessments is private health care where you can get access to a specialist without the HV, pead etc. This wasn't an option for us.

That almost certainly won't happen with the sibling of an ASD child. There are very different protocols that apply and referrals will be made much, much earlier. There is no way at all that you will be dismissed or called neurotic. They really will want to cover all bases, so use this to your advantage, whatever direction you decide you want to go in.

I live in a neighbouring borough to you(the 2 boroughs now share SEN provision) and in fact I had to beat them off even while I was pregnant. I was really upset by the fact they seemed to be assuming Ds2 would have autism too and no way was I going to let any of the people who were so hopeless with ds1 anywhere near my baby.

Starlight, you sound so frustrated - I can only imagine how you must feel.

I am no expert, just a humble GP, but would always listen to a mother's concern about her child - you know him best, you've been through stuff and you've done your homework.

2 suggestions: our local SALT team run a 'drop-in' clinic once a week at a local health centre. Is that a possibility to your? Could you phone SALT and find out if they do?

Re Cleft team: depending on local set-ups they may be a 'tertiary' service and referral might not be possible from primary care. I think if you got to see SALT or paediatrician with an interest in these issues, you'd be a huge step ahead.

And I'll close with an anecdote (I know, I know, not data): after a very early talking DS1 and an average talker DS2, DS3 and DS4 only had first discernable word around 3 - DS3 was seen by SALT which reassured me no end.

Star, you know this, but there's an amazing phenomenon in the medical world. If no-one's listened, no-one wants to listen. The moment one person starts to listen, everyone and their dog starts listening.

Take DD2 - just 3 weeks ago no-one was listening. They were 'listening' but clearly couldn't mask their 'neurotic mum' mode. Then I showed someone a video clip. They paid attention. Then, I've been able to say 'x was concerned when...' suddenly we've gone from no-one interested to CAMHS, EP, SALT, OT all interested. The Paed, when I phoned him, was reluctant to see her because of lack of involvement. Now, having copied him in on an email which demonstrates other people's involvement, he's saying 'great, sounds like a good plan...'

All you need is to get one person to listen.

Star, Just ask for a copy of the policy that states a child cannot be referred until 2 yrs.
If there is no policy produced then she has nothing to back her claims & is making her own rules up.
If she produces the policy (& I very much doubt that one exists) then you can challenge the policy.

I cannot believe that a blanket policy of 'no child under 2 can be referred' could actually exist - SALT are involved in assessment of all sorts of things as well as formal speech. Surely a much younger child/baby may need SALT input if there are feeding/swallowing/structural problems, non?
Would this not include TT?

And yy to getting ONE person to listen... sad, but true.

My DD had a SALT from the age of 8 weeks.

You know what is up interesting though. We KNEW when we decided to have baby Ds that he was at a higher risk of ASD, and unlike our naive selves before our first we no longer felt entitled to have a typically developing child, so we'd decided we could do it all again if we had to.

Turns out I can't.

PacificDogwood, thanks for your posts. I'm fairly new to our GP surgery and rarely go there so they're a bit unknown. However apart from all being straight out of school and having to pop out if the room to consult with their colleagues every time I turn up, they do seem alright. (and when I have raised things they are obviously surprised about they've promised to google ).

Hi star, sorry to hear of your problems - really can sympathise with the annoying health visitors having been fobbed off and given incorrect advice by one over a period of about 9 months with my DS. Are there Speech and Language drop ins where you live? That could be a route in. Also I have a friend who's little girl has tongue tie and they have been seeing a paed specialising in ENT issues about it (I think). Maybe GP could refer you to appropriate paed. Good luck, seems like lots of people have lots of ideas so surely something will work!

Ah Lougle yes- listening. It's the same with funding research or a charity isn't it? If no one has spent money on you, no-one will. Once you get one donation others get interested.

Listen, I am an hold hand at this and I google all the bloody time (no idea how I coped before t'interweb ).

And you, you are doing it, not because you want to, but because you have to and you are looking out for babyStar. May I pass you another bunch of ?

You are not in Scotland, are you?
I don't understand how the NHS in England works, so am not of much practical help there.

Btw, I hadn't realised this thread was in 'Special Needs" when I first posted - I lurk here sometimes because I find it educational; I hope nobody minds me butting in... The support you all give each other is amazing x.

The thing to remember is that there are other reasons for speech delay other than ASD. Don't get too bogged down with that. Glue ear, tongue tie, palate issues are all factors of speech delay and articulation.

No drop in SALTs. None that I have found though I could do another telephone call expedition tomorrow.

Not sure if I'd be allowed to drop into one out of county. Anyone know?