Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

SN children

Here are some suggested organisations that offer expert advice on special needs.

Flip

1 2

Original poster

Tongue in or Tongue out...

31 replies

fizzyanddizzy · 28/06/2009 11:33

I have a baby boy with down's syndrome and was having a conversation recently with one of the professionals who supports him which went along the lines of...

It's better to support children with down's syndrome to "pop their tongue in" because they already look different enough as it is and if you can teach them to keep their tongue in, its just one less thing to worry about.

This was said with the right intentions by the professional but I feel somewhat riled by it (and have a childish urge now to teach him to stick his tongue out at all opportunties ).

Am I being naive to think that as it is societys issue rather than his - let them deal with it?

OP posts:

2shoes · 28/06/2009 12:24

I know what you mean, but dd(cp) used to do a lot of tounge trusting, and I am glad in a weird way that she has learnt to control it.
I think as your child gets older it is easier for them if they kind of conform iynwim

2shoes · 28/06/2009 12:24

thrusting not trusting

Original poster

fizzyanddizzy · 28/06/2009 14:28

How old is your dd now? Did you have to work with her on this or did she decide?

There are a lot of things that people choose to either conform with or not and I just dont like the idea of making him feel he has to conform with what society sees as looking 'normal'

But I do recognise that, that is my issue not his and by not helping him I nay be putting him at more of a disadvantage.

Its such a minefield!

OP posts:

2shoes · 28/06/2009 15:14

she is 14 and it just happened over time. like a lot of thinks it wasd just a jokey"don't stick your tounge out" comment

laumiere · 28/06/2009 19:34

We don't have a tongue thrust issue but trying to teach DS1 (CP and ASD) not to lick things, especially the TV screen. Partly because it's annoying to clean, partly to help him fit in.

Original poster

fizzyanddizzy · 28/06/2009 19:46

Well now that I can understand more - especially the cleaning part .

I think it's more because any lolling tongue thing is part of him and the syndrome so for me it's like trying to 'fix' ginger hair or fat thighs or freckles. It also feels like it makes it seperate him more from others to make an issue of it.

I have been asking some RL friends who are divided on the subject and thought it better to get the views of people who perhaps understand the issues better.

OP posts:

laumiere · 28/06/2009 19:48

I can see what you mean, DS1 hand-flaps when distressed which we don't correct. After all his condition is part of him Our kids are very special (only 17% of people in UK are born with their disabilities) so why should we try to make them like everyone else?

therain · 28/06/2009 19:50

The inclusion support worker that comes to work with my son used say that too,
she sometimes pushed it in with her finger which really irritated me.
We have never made an issue out of it.
He is 2 and a half now and mostly has keeps it in except when he is concentrating,
or doing it on purpose to his sisters, lol

Original poster

fizzyanddizzy · 28/06/2009 20:03

OMG -therain that would really irritate me too.

I am all a bit at odds about it - but also when I look at his father and two older brothers sitting on the sofa together watching tv - all open mouthed I realise he doesn't stand a chance

Someone said that as a parent you have to choose your battles and I think he will have enough going on for me to hassle him about without constantly telling him to 'pop his tongue in'

OP posts:

therain · 28/06/2009 20:10

I agree, at the moment I seem to spend my time stopping him from pulling someone's hair

Original poster

fizzyanddizzy · 28/06/2009 20:18

therain does your DS have DS?

if so would you mind telling me what he is up to nowadays at the grand old age of 2.6 and what kind of support / input he gets?

OP posts:

therain · 28/06/2009 20:46

Yes he does have DS
He is doing really well I think, a good way to describe him would be that he's 'busy', always on the move.
He has been walking for about 4 months and is quite steady now, he can climb up on to things and loves his sit n ride car.
He says quite a few single words and knows about 30 makaton signs.
He loves to look at books, watch mr Tumble and annoy play with his sisters

The support we get has not been that great really, Physio/occupational therapy, 1 hr a month, speech therapy, 1 hr every 6 weeks. and inclusion support 1 hr a fortnight, but I think that once he starts nursery in January these visits will get much less.

How old is your boy ?

Original poster

fizzyanddizzy · 28/06/2009 21:04

Woh, he sounds like he is doing great!
My son is almost 9 months old and is v sweet. He is about to have his first child development team review and so has been having lots of assessments recently. I think he is doink ok - he has low tone and is hypermobile so his physical development seems a bit delayed but he is v sociable and smiley

laumiere I do think you are right in terms of why try and make them like everyone else. I work with adults with learning disabilities and I genuinely find that most of the people I support have more individuality and character than most of the 'normal' people I know and I honestly have more respect for the fact that they just don't care what other people think.

OP posts:

therain · 28/06/2009 21:10

Weve never had a team review wonder why ??

Original poster

fizzyanddizzy · 28/06/2009 21:12

hmmm - so who co-ordinates the support your son recieves and how is the support reviewed to ensure its in line with what he needs?

OP posts:

laumiere · 28/06/2009 21:21

therain We first had a multi-disciplinary meeting when DS was 2.5.

fizzy the one thing we are working hard on is communication. DS has fab receptive language but won't talk or make signs. We're working on PECs (picture exchange systems) at the moment.

therain · 28/06/2009 21:23

Well the paediatrician set it all up in the begining, but now they all seem to do their own thing, they must be aware of each though I suppose, I've never questioned it

Original poster

fizzyanddizzy · 28/06/2009 21:30

I dont think it is for you to question it - honest. I think its normal to just take what you get. Obviously things work differently across the country. What's inclusion support? and are you part of any support groups networks?

OP posts:

therain · 28/06/2009 22:06

Inclusion support is like early years education, I think it's called portage in some places.
The only RL thing I go to is a SN sensory group, that's great as there's 3 other children with ds that go.

I post on the uno mas bulletin board, and lurk on downsyn.com.

I'm really sorry for hijacking your thread

laumiere · 29/06/2009 09:09

fizzy In our area if a child is dx'ed they are referred to the local Children's Centre (Kaleidoscope) which was all of the services in one building. They organise the MAPP, and we attend and get regular updates. It meets 2x a year and liaises with DS's preschool too.

Original poster

fizzyanddizzy · 29/06/2009 18:33

ooooh therain - I have never heard of those sites before - am going to investigate more! Thank you.

My son gets portage - every fortnight at the moment and then he goes to a specialist toy library alternate weeks as well. We havn't me anyone else who has DS and is little.

laumiere what is the MAPP - is it a person centred plan?

OP posts:

laumiere · 29/06/2009 18:43

MAPP - Multi-Agency Person Plan.

therain · 29/06/2009 19:19

The Downsyn forum site is fab, but really busy.
The first time I went on there I spent ages just looking at all the photo's, I was amazed as I didn't know anyone else with DS then either

disneystar1 · 29/06/2009 20:34

hi there i have a ds with ds and other major health issues
he has always got his tongue out, i guess its just him i love every part of him tongue poking out as well.....
hes 1 in 3 weeks and is trying to sit up now and can nearly manage it, no rolling crawling etc...never expected it but he will get there in his own sweet time.

i guess to me my samuel is just that my samuel hes beautifull in every way and i woudnt make an issue of his tongue right now its just not that important, other ppl i know have dc,s with ds and they struggle with so many important things they just take place over the little things iyswim.

i wonder if they do stop it in time themselves and as youve said just when concentrating.

Original poster

fizzyanddizzy · 29/06/2009 20:57

therain - what have you done to me. Have just spent the last hour looking at photos on downsyn and have only come back here to tell you that

But as disneystar has told us about her ds, I have stopped for longer. He sounds v. clever trying to sit up already! Is he ok now health wise? I agree that when there is so much more to worry about - who cares about a tongue with a mind of its own!

OP posts:

Flip

1 2