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

131 replies

StarlightMcKenzie · 20/11/2013 14:36

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.

OP posts:
working9while5 · 21/11/2013 11:40

Hey Star,

I started to post last night but got interrupted by my own kiddos.

I think it's hard to know the extent to which tongue tie is going to be implicated in this, but certainly speech/language (expressive) isn't where it really should be if he's saying "erk" only.. though am I reading this right?

Can you do me an inventory? I'll do my ds's as an example, as you know he is the same age as yours (about a week younger I think?) and though he had a pretty crappy tongue tie and also has moderate bilateral fluctuating hearing loss, I'm not currently concerned about his speech so you can use this to do your own inventory and I can give you some basic advice while you wait.

Okay - here it goes.
What we are looking for here is: what consonants and vowels does he have and what syllable shapes is he using.

v or v/v
ear (ee eh)
uh oh - it's fallen
ah ah - stop it! (this is an Irish thing...)
ooh aah - monkey

vc - up

cv -
ga - car
baw - ball
go - coat
dee - cheese
muh - moo/cow
baa - baa/sheep
no (nose/no)
yeh - yes
mo - more

cvcv - same consonant
mama
dada
baba - baby/himself
dedda (Brendan)
doo doo (choo choo/Thomas)
la la (Smurf - the song has become the name!)
deh deh - bye bye
nigh nigh - night night
dodo - toes

cvcv - same consonant/different vowel
nee naw - his fire engine
hiya

cvcv - different consonant/different vowel
hello
puppy

vcv
oba - open
aba - apple/orange/general fruit
iya - hiya
aw doh - all gone

cvc
duk - stuck/duck
look - look

I've included things like choo choo/baa/moo/nee naw here because they are being used as actual words e.g. to comment and request vs as symbolic noise in play.

In terms of speech, the general advice at this age would be exposure, exposure, exposure. Communication temptations to increase words regardless of what sounds are currently there/not there as you really need language you can work with to start to put shape on sounds. Speech clarity is always the last aspect to develop.

Once the general "word shapes" are there in terms of an identifiable shape being used as a word to request, comment etc, then you want to think about syllable shape.

cvcv (same consonant, same vowel) is usually where you want to start as it is the foundational block of speech in many respects.

In terms of exposure, you can do things like sing nonsense songs with cvcv structures e.g.

Mum mum mummy mum mum mum
MUMMY MUMMY
Mum mum mummy mum mum mum
Mummy Mummy MUM )(to tune of camptown races, repeat with baby and daddy etc).

Overtime you can use intraverbal procedures e.g. make a gap and get him to fill in within a song.

As you say he has "b" I would actually start with the sounds he has and try and get them occurring in other syllables using a procedure like this.

Other questions:
Have you had his ears checked? Any history of recurrent ear infections/ snottiness etc? Any reason to believe hearing might be compromised?

Is he babbling? Jargoning? Did he babble before ten months? Have you noticed any unusual sounds e.g. high pitched shrieking in place of babble or communicative noise. Does he make sound and jibber jabber away to himself while at play? Would you describe him as making much sound or is he particularly quiet?

Wrt tongue tie in particular, have you noticed ANY of these sounds in babble or jargon

t, d, l, r, sh, ch?

All of these involve tongue tip elevation in one way or another.

I will be honest and say it's rarely tongue tie. I don't think in 12 years of working, 8 with kids with specific and severe speech disorder that I have ever seen anyone who has had issues specifically because of tongue tie. I guess there might be some on the cleft lip and palate pathway but it's not common for tongue tie to cause articulation difficulties. Both of my boys have had SHOCKING tongue ties and all sorts of breastfeeding shenanigans which I won't bore you about, and ds1 had a division at 10 days which promptly grew back. The main implication of t/t is usually feeding vs speech.

LickingMyWounds · 21/11/2013 11:43

You know, there should actually be some sort of support in place for parents who go through this, because we all seem to feel the same.
But for starters, yes, open your front door with the chain on and lay down your terms before they are allowed in. Or we could just get T shirts printed, 'No judgey shit in my personal space' ....

StarlightMcKenzie · 21/11/2013 11:56

Thanks so much for posting Working. I'll try and get an inventory. But I've just realised that his 'erk' has no k. It is more like a cockney 't'.

He says 'bye'

I can work on 'book' or at least 'ber' as a start because he understands book and is part of a regular interaction.

Hearing - afaik it is only a matter of time before he needs grommets. My other two have them in and I did until I was 10. His nose is in line with his ears like us all. Having said that I'm fairly certain he can hear ATM (though I guess it coukd come and go).

At least the HV can refer for hearing fairly painlessly.

OP posts:
working9while5 · 21/11/2013 12:08

That's pretty much what it does, come and go.
When stuffed up, the decibel loss is pretty much like having your two thumbs stuck in your ears. It will affect his speech. It does clear periodically.

I do feel my boy's words are very much "my mother is a speech therapist" words in terms of more, up, all gone etc. I do say the same things again and again and again and again and I am like communication temptation queen and they are very notably different to his brothers in terms of the relatively few nouns he's using...

I cannot get him to make a vocalisation for drink for love nor money but I'm not concerned right now. I know his hearing is compromised and he hasn't got any voiceless sounds right now, but he's so young I'm not concerned as long as the words are coming and they're "toddler intelligible". I was offered grommets three months ago but am waiting a few months because there were 15-20 words at that time so I wanted to see if it would settle. Of course since then, he's had another perforated ear drum. Sigh. I thought it was settling!

Try not to worry. I know it's easy to say that but honestly, if I were to read you the histories of the students I work with very few of them were even vocalising before 3. It doesn't sound as though your little one is precisely where he might be but the most usual explanation is ears or just having too much competition for talking.

zzzzz · 21/11/2013 12:25

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StarlightMcKenzie · 21/11/2013 12:30

Perhaps I do need to do more things myself. I took ds to every group thing going and it didn't make an ounce of difference.

I didn't take dd anywhere and she was talking as she walked out of the womb, but I think I have forgotten quite how much verbal behaviour she was subjected to by proxy.

Now baby ds and I rarely go to groups and it can be fairly quite in the house.

I just did some training with raisins. He copied 'er' for several. When I changed to 'ber' he refused. In decided he wasn't imitating the 'er' just expressing frustration so gave in to try again properly another time and he took the raisin and as he wandered off said 'ber' and giggled.

OP posts:
lougle · 21/11/2013 12:32

Grin That is brilliant! He's not going to make it easy for you.

DoctorDonna · 21/11/2013 12:42

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bochead · 21/11/2013 12:54

Sing and sign did wonders for DS at that age.

I used to stick the dvd on for 15 mins every morning (was working so couldn't get to all those wonderful Mum & baby coffee mornings etc).

StarlightMcKenzie · 21/11/2013 13:13

Most of his babbling is singing.

Perhaps I can get a video. Hang on.

OP posts:
NewBlueCoat · 21/11/2013 13:52

that is a brilliant post, working, thanks (and eeeek! my ds is about 6 weeks behind yours/babystar and there is no way he is anywhere near there)

ds has communicative intent. of that I am sure. and he burbles. and says "adi" a lot. and dada (more usually addada) sometimes.

anything else, he just giggles if we ask him to say it.

he is asking us to name things (shoves book in my face, and urges me to say something, brings a toy over to get me to name it, etc), and loves songs. absolutely fascinated by songs.

but, err, that's it.

I am ont he fence with him. he is incredibly sociable, and there is a lot of two way stuff going on, which is fab. part of me thinks he will be the same as dd2 (first word 'dinosaur' Hmm) and is just storing everything up until he gets going, and then won't ever shut up (like both dd1 and dd2!). but part of me does have a little niggle.

I think I need ot go and see the hv. and get something in motion. bollocks.

(sorry for hijack, Star)

StarlightMcKenzie · 21/11/2013 14:01

No. Baby star only has really what I have put on here, but in a moment I'll put a couple of videos on. You will see on them social intent (at least I do, and I may well be in denial of course). Almost all of his babbling is singing.

OP posts:
StarlightMcKenzie · 21/11/2013 14:02

Newblue, please hijack away. It's all relevant anyhow as our babies are at similar stages and god knows we probably both need information like no-one else NT or not.

OP posts:
StarlightMcKenzie · 21/11/2013 14:03

But yes, thank you very much for your post Working. It is extremely useful if not a bit panic-inducing. Grin

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NewBlueCoat · 21/11/2013 14:29

oh, one more.

babybluecoat says 'tsth' for teeth. (poor representation, sorry. and can't get him to say it now, he's just giggling) - he loves having his teeth cleaned!, and last night, when he finished feeding, he pushed away, and said 'tsth' and looked towards the door, expecting to be taken to the bathroom. that's got to be good, right?

StarlightMcKenzie · 21/11/2013 15:45

www.dropbox.com/s/czveo5jzrdfuxuu/book.MOV

Have no idea if this will work, so bit of an experiment.

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DoctorDonna · 21/11/2013 16:06

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StarlightMcKenzie · 21/11/2013 16:13

www.dropbox.com/s/d1oawvozabvhz0i/singing%20sock.MOV

And the second half of this video is pretty typical of the babble what we get all the time. Though I think he might have attempted the word sock right at the end.

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StarlightMcKenzie · 21/11/2013 16:14

Though promise the majority of my interaction with him is NOT through bars.

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zzzzz · 21/11/2013 16:15

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StarlightMcKenzie · 21/11/2013 16:19

Ha ha thanks. You wouldn't think that if you'd ever tried to put a coat on him or get him in the buggy.

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DoctorDonna · 21/11/2013 16:23

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StarlightMcKenzie · 21/11/2013 16:27

Great. Thanks Donna. I don't have the impressive Working list though. Perhaps I really do need that nursery rhyme, chatter advice after all. We had a lot of fun today trying to talk to each other more than we usually do.

You do it all properly with your first, he develops a social communication disorder.

You do nothing with your second though stress about it, - parents evening today and we're told that her language is way ahead.

You give up completely with your third.........

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tryingtokeepintune · 21/11/2013 16:32

So sorry you are having to go through the system again, Star.

Nothing useful/helpful to add except that he is so gorgeous!

Yes, heard 'book' and 'look' and he seems so happy and eager to communicate.

lougle · 21/11/2013 16:34

He is adorable. Beautiful communication skills, to my inexpert eye. He really draws you in and the expectation of reciprocation is absolutely clear.

I thought his range of sounds was quite lovely! He was really purposeful about what he was showing you, too - there were moments when he turned the pages and you could almost see him thinking 'no, not that one...no, that's not the one...there it is! Look at that, Mum!'