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SALT - trying to get thoughts together on what I should be --insisting on-- politely asking for.

(18 Posts)
hazeyjane Wed 28-Aug-13 19:01:24

Ds has a new SALT starting in September, I have not been satisfied with the provision he has been getting, and this seems a good opportunity to lay out what we want for him.

He is 3.2, completely non verbal, no babbling, makes a monotone 'unh' sound, has poor oro motor skills, a slightly enlarged tongue, which is always protruding. He has delayed understanding, but it is much less delayed than his expressive speech. This is consistent with the genetic condition, that it is suspected he has. He had a videofluorscopy about 15 months ago, which showed a slow swallow and aspiration. He has thickened drinks.

I have taught myself Makaton, and have signed with him since he was about 10 months old, he has a few signs, but his signing is often pretty unlear. He was issued a GoTalk communication device in June, but apart from a meeting when it was issued, we have had no SALT input wrt it, and our use of it is pretty hit and miss!

He has had no SALT input apart from the issue of the device, since March, his previous SALT wrote a report around the same time, which was not worth the paper it was written on, I feel as though he has never been properly assessed.

He has a full time 1-1 at preschool, who is great, sent herself on a Makaton course, and is really keen, but has had no input from SALT about exrecises or things to do with ds.

So I guess I just want some ideas of stuff that might be helpful, and what I need to be asking for, wrt SALT, and the statement (he has been referred)

Thankyou (apologies for rambling!)

zzzzz Wed 28-Aug-13 19:15:02

Well from your post

You need

Comprehensive assessment so you get a clear idea of where he is now
SALT to identify some objective and what work you need to do to help him get there
Training on how to utilise Gotalk
Date for review
Clear outline of optimum support in school so you can police that

Ask for a detailed assessment, and then some SMART targets for you to work on at home, that can be objectively measured for improvements or achievements.

That is not the same thing as being given a handful of badly photocopied suggestions.

Make it clear you will do the legwork and acquire any resources necessary and use them as a 'consultant'. Have the SALT 'train' you in delivering on the targets, feeding back to you how you can do them more efficiently and tell him/her you will video yourself once you have got going for his/her comments next visit.

hazeyjane Wed 28-Aug-13 20:30:12

Thankyou.

This is all really helpful. I think I need to ask or a review of his feeding from the SALT as well, and another video fluoroscopy to assess the aspiration issue.

One of the big issues for me are things like the GoTalk being issued but then having no follow up, we try to use it but feel a bit like we are flailing around in the dark.

boobybum Wed 28-Aug-13 20:37:39

Is it possible for you to see a SALT privately who has relevant expertise? As you haven't had any NHS input since March then you may qualify for a grant from Cerebra?

hazeyjane Wed 28-Aug-13 21:24:00

I did look for a private SALT when we got the crap report, unfortunately 3 that I got in touch with said that they didn't deal with children with feeding issues, and 2 said his needs were too severe. Then I heard we would be getting a new SALT in Sept, and I thought maybe it was best to wait and see what we got.

zzzzz Wed 28-Aug-13 21:43:56

Go on line and look up the names of the SALT in the most appropriate language unit near you. Phone them and ask if they do private work.

Or go straight for an ICAN assessment (I haven't tried them but they look sensible).

Hang in there hazey non-verbal 3 year old dc are exhausting and my anxiety for mine was through the roof. It does get easier.

Not if you are broke, but if you can manage a good music therapist can be a source of release and happiness.

2boysnamedR Wed 28-Aug-13 22:34:20

I found my salt was always using different tests to asses my son. I asked her how she could asses progress as there no comparison. Having a few questions on a list and taking the list with you will be a good start as they know your not going to be fobbed off. I dispair with my ds's salt provision

zzzzz Wed 28-Aug-13 22:59:47

I'd be loath not to have at least one baseline assessment if it was my child. Frankly I wouldn't have been brave enough to just wing it without at least some professional support when ds was 3.

Ultimately my private SALT was fabulous, but for me not ds(or only ds indirectly). She taught me to trust MY instincts and she started me on the colossal readathon that has formed the nutty old goose you see today. She was a rare and special therapist. blush

hazeyjane Thu 29-Aug-13 10:37:45

It has been bit of a complicated debacle to be honest!

The lack of a proper assessment is one of my main gripes, but I have come up with a list of questions and ideas off the back of this thread.

I tried to see the SALT that is linked to the centre where ds sees OT, physio and paed, she is the same SALT who did his videofluoroscopy, but they wrote a letter saying that we had to deal with a different SALT in a different area (we fall between 3 different areas for different needs - it is a huge PITA), unfortunately his regular SALT was not allowed to attend the videofluoroscopy, yada yada yada.

It looks as though the ICAN assessment service is only available from 4 years old.

Zzzzz, can I have your old SALT?! (you are a lovely, nutty old goose, by the way!)

zzzzz Fri 30-Aug-13 19:25:52

You've been on my mind hazey

Ds has just rediscovered this

http://www.amazon.com/Guidecraft-Inc-G5060-Feel-Find/dp/B0006OJ2M2

From a dark shelf. It's a fabulous game as you can use it in lots of ways and it is very good as something to play together.

Great for
Matching shapes in holes
Learning colours
Taking turns
Losing etc

Ignore if inappropriate. Ds's behaviour always takes a dip just as he does a developmental jump. I think he gets bored as he outgrows activities and so his energies turn more to the dark side grin.

All those montessori matching activities are a gift for the verbally challenged. Eg eight identical balloons, 2 filled with rice, 2 with corn flower, 2 with beans or marbles and 2 with water, stick in a bowl and he has to match them by feeling. Do the same sort of thing with smell, taste, temperature, sounds Etc etc.

zzzzz Fri 30-Aug-13 19:26:11
SummerRain Netherlands Fri 30-Aug-13 19:46:31

You need to ask for an assessment first off, they may do it anyway, ds2 is usually reassessed at the start of every block. And emphasise that you don't feel you're getting maximum benefit from the gotalk as you haven't received any training.

Don't be surprised if they don't do much though, ds2s salt was mostly for my benefit until he developed some speech.

When ds2 was non verbal most of what SALT did was physical exercises. Blowing through straws, making shapes with his mouth, that sort of thing. She also took a signing course with me so we could utilise that in conjunction with signing. Not much else happened though until he developed a few sounds she could work with.

Realistically when they're at the uh stage not much can be done speech wise, it's all about non verbal communication and oral motor exercises, most of which is done at home.

In our case ds2 started to speak when he had an alternative way of communicating (signing) as it took the pressure off, and allowed us to recognise what some of his uh variations meant without him melting down in frustration. If you can get some help with the gotalk that could be your trigger.

zzzzz Fri 30-Aug-13 20:05:10

I took the line that just because ds couldn't talk didn't mean he wasn't ready to learn colours numbers etc. just take the reliance n language out of the exercise.

SummerRain Netherlands Fri 30-Aug-13 20:18:10

Exactly, if the non verbal stuff is allowed to fall behind just because of lack of speech then the child has more work in the long run. And sometimes you stumble sideways at something that the child is actually interested enough in to want to talk about and they make a sudden unexpected effort.

It's hard when dealing with a non verbal child sometimes to remember they're not babies, I was/am very guilty of treating ds2 younger than he is. I have to constantly remind myself what dd was doing at similar ages and try and try and teach him those things. There is a 4 year old boys mind in there, it's just hard to see it with the poor speech and other issues.

hazeyjane Sun 01-Sep-13 08:46:23

Sorry, meant to come back to this thread, to thankyou all for your great posts.

Unfortunately I am struggling so much with ds's frustration and lashing out that i just feel a bit overwhelmed by it all.

I am hoping that things will improve when the Summer holidays are over, and we get back to the daily grind routine of day to day life.

The game you linked to looks great, zzzzz - ds's portage worker is a former Montessori teacher, I will ask her if she has something similar.

He has just this week signed 3 colours whilst picking out the right colour paint, and I have made a board of colours to go in the GoTalk.

You are so right both of you about babying because of the lack of speech - it doesn't help that ds is so short and has such a babyface! I think I sometimes forget the things I was doing with the dds when they were a similar age, because it seemed so spontaneous with them, but with ds it all takes so much more effort (not that I'm not willing to put the effort in)

We are waiting for a referral to come through for audiology, because i think something might be going on with ds's ears, which obviously won't be helping with speech.

zzzzz Sun 01-Sep-13 11:11:17

"You are so right both of you about babying because of the lack of speech - it doesn't help that ds is so short and has such a babyface! I think I sometimes forget the things I was doing with the dds when they were a similar age, because it seemed so spontaneous with them"

This is SO true. I think I am STILL struggling with this and ds1 is eight and he is a twin so I have no bloody excuse at all. hmm.

I guess I need to remind myself daily that things need to be differentiated for him NOT dumbed down.

I also think it's important to be kind to yourself. Yes, boredom is a huge part of "bad" behaviour but it is not an even playing field. With the best will in the world you are not going to be able to totally compensate for the disability he's living with. If I am honest (which I try not to be with myself on this one) it takes about 5 times at much effort to provide a very mediocre childhood for ds. sad. I aim to do my best for him. Sometimes I'm just tired.

I find it helps to list things that he could work on/try in bed in the evening. It sends me to sleep feeling a bit more positive.

Things like, pouring own cereal/milk, bubbles on the trampoline, learning some letters, cookie cutter biscuits, washing my own hair, moving things with kitchen tongs, blowing out candles/bubbles in soapy water, balls down an old bit of gutter/pipe, feeding ducks/ponies.

I wish we all lived closer together. I'd love to meet your little boy. It gets MUCH easier hazey. It really is just a different path. A bit stoney lonely but sometimes it is very beautiful.

hazeyjane Mon 02-Sep-13 09:22:16

Thankyou for that lovely post, zzzzz.

I like your idea of just having a few things to think about for the next day - I think I sometimes get as overwhelmed by Stuff as ds does - which is why a SALT handing me a pile of pecs cards, makaton sheets and a GoTalk is going to leave me whirling around like a crazed goose. The Makaton has worked best by just concentrating on a few signs that are important in ds's world (fire engine, helicopter and cake!) I need to apply the same thing to the other small steps.

I hope we get a chance to say hello at a meet up and I can meet all the little zzzzz's, they are a lucky bunch to have you as a mum.

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