6yo DD can't drink without a straw

[Gracie123]

Is this very unusual?

Bit of background, her older brother is diagnosed with autism, and those of us who know her well think she might be a "but on the spectrum" but she's never been formally diagnosed with anything.

She was believed to be brain dead during my pregancy, and was extremely late to talk (nearly four) and even now most people can't understand her. She's had her hearing checked multiple times (apparently she is a super hearer, so long as she isn't asked for a verbal response) but is "selectively mute" (can talk, unless stressed). Don't know if any of this is related, but just throwing it out there.

She really struggled to breast feed and we eventually ended up on bottles (despite successfully feeding my first easily, could never work out what was wrong, although HV insisted she wasn't tongue tied).

She can't drink, unless it's with a straw.

I don't mean she's stubborn and won't; she actually chokes and splutters and cries. She'd rather not have a drink all day than ask for a straw if I haven't remembered to tell someone about it, so unless they know and offer a straw with a drink she will just decline the drink, but then come home crying because she was so thirsty at the gym class/trampolining/friends house.

I know it's not "normal" per se... but is there anyone else out there with similar difficulties?
How did you overcome it?
Should I be worried?

[Gracie123]

We have tried every kind of silly cup/sports bottle by the way.
She can't manage any of them.
Only a straw.

[weasle]

Could she have cleft palate? Or a oral muscular problem? Sounds like she needs to see a speech therapist, they deal with food / drinking issues too.

[LatinForTelly]

I think this can be to do with proprioceptive skills as well as control of muscles (?) in the mouth and things like high arched palate. I'd suggest seeing an OT if at all possible.

There is a good description of all the different motor skills needed to drink i think in the book 'Just take a bite' which is generally aimed at resistant eaters, but goes into all the different reasons why a child might be resistant.

I have a child who had similar difficulties, though not quite as severe, and still finds it much easier to drink from a bottle with a sports top than an open cup (late primary age).

Best of luck.

[LatinForTelly]

oh sorry, took ages to write post and didn't see about the sports bottles. Yes speech therapist would be helpful but it was my child's brilliant OT who explained to me about proprioceptive skills.

[Gracie123]

I don't think she has a cleft palate (can you see that? There's nothing visibly wrong when I look in her mouth to brush teeth etc...)

How would I access an OT? Is that through GP?

I feel a bit embarrassed to take an appointment when she isn't sick

[Gracie123]

Does proprioceptive affect things like balance? I'm sure I've heard that word related to balance...

She's terrified of anything that moves. Won't go on a carousel and has a rocking horse that she's had from baby hood which she pets but won't sit on.

[Finola1step]

Has she been referred to SALT? Not just for her speech but her overall development of her mouth, tongue, muscle control and swallowing reflex. I wouldn't be surprised if drinking through a straw, delayed speech, and pronunciation difficulties aren't all linked.

[Gracie123]

We've on and off been referred to SLT but they always discharge her.
They never seem to find anything wrong and just say she is "late" or "has delays".
One woman told me she was just stubborn and choosing not to talk. :-/

[weasle]

Yes go to GP to ask for referral.
Speech / drinking issues probably related.
SALT = speech and language therapist.

[Gracie123]

She is very intelligent by the way; she reads fluently and asks sensible questions if you can understand her.

She just really struggles with this. It upsets her a lot too.

[Gracie123]

Thanks all. I shall call them in the morning.

[LatinForTelly]

Yes proprioceptive skills relate to balance as well. They are 'an understanding of where your body is in space'' (!) and mostly it's stuff we completely take for granted. But it's fascinating if you talk to an OT about it.

Just the act of drinking for example, knowing how far to tip a cup, where that places the water in the cup, how far back to tip your head etc etc etc.

You can have a high arched palate without it being noticeable to the average person (different from cleft palate). My son has a condition where feeding difficulties are the norm, and part of this is inability to move stuff around the mouth effectively, be confident to swallow etc.

Agree with everyone a speech and language person is worth seeing - though if you've seen them and they haven't been much help, that's disheartening, but definitely ask for OT referral too, and yes, this would be through a gp. There are private ones too I think, if this is a possibility and the NHS ones would be a long wait. I don't think private ones would link in as well to school though etc.