Speech delay without ASD

[chickensaresafehere]

My DD,3.8,is non verbal,has had a barrage of tests,but with no outcome.ASD has been ruled out.
She has recently been seen by Dr Curran(AlderHey),a paed neuro & he says he sees 1-2 cases of this kind of severe speech delay a year.Just give her as much support as possible & she will hopefully develop some sort of speech by the age of 12.
We have limited SALT,which has forced us to use a private SALT.But progress is very,very slow.

I feel very alone with regards to her speech delay & wondered if there were any of you out there with a similar story???

hs she had any genetics done , and any luck with speech unit for school Ds has SLd but defintley no asd

I'm on here because of ds2 ( asd).. However ds1 had speech delay without asd. He's now nearly 16 and absolutley fine.. we found it became a lot better with SALT and when he found his feet in school and started Reading. As he went on through school the did find out that he has mild dyslexia and still has issues spelling because he doesn't process some of the middle sounds in words.. Barring that he's doing fab in school, caught up and is and A grade student who wants to go into the medical world for a career.

But at 4 years old no-one including me could understand what he was trying to say and the tantrums because he was frustrated were awful!

ds is now in speech unit as he has speech disorder rather than delay but he is making progress though theres concersn that he still cant say constants

Speech by 12!!!!!

If this is their prediction, they need to stop calling it "delay" and start calling it disorder.

As a matter of urgency, I would say that you need her to have a cognitive assessment to establish whether she has a learning disability. If she doesn't and/or there is a significant discrepancy between her performance IQ and her verbal scores, she needs to go to a language unit.

If not, they need to be clear with you about a diagnosis and help you find alternative education for her that is appropriate. Not just tell you to muddle on regardless!

If there is none in your area, they will have to provide an equivalent. At the very least, they should be sending her for a specialist evaluation e.g. at ICAN.

This is not good enough!

Hi, just wanted to say hi. I am probably in a similar boat.

DD 3 has GDD but now the physical areas of delay do not seem as severe for the moment as the language and understanding. Also it has been easier to address the physical issues and try and make progress.

The speech delay has left me really down as well. I find it totally exhausting trying to encourage a response every waking minute of every day. Now that her peers are all talking and the 1-2 yr old younger siblings of my friends are catching her up its really obvious that there is a problem.

At last friends are getting how hard it has been. .....rather than saying well x didnt say much til they were 3 etc. Dont worry! It's still not much of a comfort.

I am worried now and for the future - in august I just thought she may never speak - as drs predicted.

Anyway, early days here but after 2 months at a specialist school for speech and language - Approx. 45 hours of therapy ( in a small nursery style group ) . We have some progress.

DD says bye bye almost clearly and said hello yesterday.
2 months ago we had nothing at all.

Now she is experimenting with her voice all the time and tries to copy sounds.

So I am feeling optimistic again.....who knows if she will remember how to say hello tomorrow but its been a good day today.

What I just wanted to say is that I know how hard it is. I hope things continue to progress for you and DD. I think the Drs are so unhelpful at times.....

I hope more people come along with some helpful stories.

chicken dd is almost old enough for ican maybe make contact with them i made contact when ds was 4.1 and he went when he was 4.5 they helped me get ds in his unit proved that cognitavley he was about right , though obviously pd affected him to a point

you mention AH, not sure if that means you are Liv based, if so here's the info page about language units and ican nursery:-

www.liverpool.gov.uk/Education_and_learning/Schools_and_colleges/Special_educational_needs/speechlanguage/index.asp

Thanks for your replies.
DD's understanding is good,she has full statement for pre-school & also for MS school,in September.She is also hypermobile & only started walking 6 months ago.
I contacted ICAN about 6 months ago,but they could not help us as she needs to be 4.No way we can afford an ICAN assessment,as I have just been made redundant.
The paed neuro said she would do better attending MS school,as I asked about speech units.
I am in Cheshire,so probably cannot access the Liverpool based units.

Spur it is very lonely,sad & frustrating speech delay,isn't it,the hardest is pre-school & all the other children chatting away to their parents,whilst me & dd walk out in silenceOf course I ask her how she has gone on,but she cannot tell me.

Is the paed neuro really the person who is qualified to say what would be the best educational placement for her?

What does the statement say? What is her official diagnosis at the moment?

Chickens, If your DD's understanding is good thats really positive.
I am no expert but we have been told by SALT that as DD's understanding appears to be better than her expressive speech it suggests a speech disorder. So we have been advised that she is most likely to progress in a S&L unit of some description.

Speech is not the only issue for us too. However, DD's sudden attempts to speak over the last few weeks have coincided with her recently being given glasses, orthotic insoles and a DMO orthotic suit which she has been wearing since Sept. She is physically more capable and we have noticed a difference in her walking and confidence etc. I am sure the 2 are linked. Not an expert though.

Also as I mentioned she started a specialist nursery which has a multi-sensory approach to learning. Breaking things down to help with motor planning etc.
They also have focussed on oral motor exercises before trying speech therapy.....

I have no idea if this make any sense.

But it has helped. We are lucky to have found help and its been a weight off for me. I have found their support invaluable and it got me out of a bit of a slump. I was feeling really sad about it all. Also the other parents are so nice and really helpful too. Its made me feel less alone.

I agree with the other posters that your DD should be getting more help. I am sure that meeting with ICAN or a specialist team would help you immensely as her carer......maybe you could get funding for ICAN assessment - especially as your DD is statemented already - I am sure you can request or your current SALT can.

YOu are not alone though. I wish could help more. I bet there are other parents near you that are in the same boat.

there are other ways to communciate then speech and not having speech is no excuse for not communicating.

.
have you tried sign language?
if she has good understanding you could go straight to BSL - otherwise makaton see soemthing special etc.

also using pictures/symbols. is she beginning reading? can seh recognize her name of first letter of her name?
my so has no speech but could read and recognize words early on - he now uses a small touch screen computer running software called the grid2, he uses predictve typing and pages of pre set words to construct sentences.

get her an ipod or ipad and download free apps for communication like taptotalk

proloquo2go is about £120 but you would need to play around with it a lot to make it fit her needs. but it has potential.

not speaking should not mean not being able to tell you anything - there are a varierty of means to communciate.

use simple books you make with sets of pictures symbols.
even a basic happy /smiley face and a way to answer eys or no -
you could also ahve pics of what she does att school so she can point and tell you which she did today

get school involved in this. having them do a daily note in her home school book on what she did gives you something to talk about - jsut give her a way to tell you herself using words/pictures/symmbols.

"just because i cannot speak, it does not mean i have nothing top say" - she surely has plenty to say and you/SALT/nursery need ot be working together to give her a voice - thru signing, symbols, pictures, words, ipad or iphone apps or a combination of all of these. a good home school book with photos so she can say yes i did this, plus means to say "no" is the place to start.

take lots of photos of everything adn everybody and make her a basic communciation book she can carry around and refer to -from people to places to food she likes. she CAN go ask for her favourite food in a restaurant if you give her the means to do so; she can tell you about her day at school if you and school work together on this.

PS>teh evidence is that using other means to communicate does NOT prevent speech happening, if it is going to happen.

oh and the private SALT should ahve already started you off on alternative means of communciation - if she ahs not done so then dump her and get one who will give your daughter a voice by alternative communciation while ALSO working on speech production.

you cannto sit and wait til she is 12 before using alternative means of communication. the focus is allw rong if you (by which i mean SALT) not given her a "voice" already.

(i took my ds to many diff private SALTS, it was only once we got working on PECS and then on the communicaiton device that things moved forward - and that was with one one one teachers wroking on holistic approach - funnily enough not the SALTS...

but there are good SALTS out there who will look at the bigger picture. you need to find one who will work on communication and using other means as well as speech production.

dont wait.
get an iphone and taptotalk or ipad and start now...make her a digital photo communication book.

dont let her have a biscuit, drink or favourite toy til she points out what she wants in her book . then she will begin to "talk" to you.

here are some ipod/ipad apps links
www.proloquo2go.com/

www.doitmyselfblog.com/2010/the-ipad-as-an-affordable-communicator-initial-review/

katilea.wordpress.com/2010/06/15/aac-mainstream-v-dedicated-devices/

www.blogher.com/ipad-nearmiracle-my-son-autism

www.squidalicious.com/2010/09/talking-ipads-and-autism-with-autism.html

itunes.apple.com/gb/app/voice4u/id339916109?mt=8

www.dailymail.co.uk/sciencetech/article-1276195/Father-creates-iPhone-app-gives-voice-severely-disabled-daughter.html

www.miasapps.com/

www.taptotalk.com/index.aspx

We have used makaton with her for nearly 2 years now,but although she recognises it signed to her she is reluctant to use it herself.The paed neuro says this is due to her speech delay as it is the same part of the brain that deals with both speech & signing.We haven't had much luck with pecs,real-life photos seem better,but we are persevering with both.
The private SALT is encouraging her to vocalise for open-ended questions,which is working great.She will shake her head for no & make a sound for yes,which compared to a year ago is a major improvement.
She has no official diagnosis.
Can someone who has gone through an ICAN assessment explain what happens & how it has helped them??Does your dc attend MS or special school & what difference did the ICAN assessment make??

chickensaresafe

Not sure what your sistuation is with regards income know said been made redunadnt talk to ican they can and do provide help for their fees in form of a bursary

Chickens,
We have come across similar stumbling blocks with Makaton and PECS. We use real life photos to motivate dd to talk eg. photos of her doing things are really interesting to her. Its hard work. We also tried tap to talk - its all to confusing for DD her other delays make it hard for her to use those kinds of things now.
We have no official diagnosis either.

Hi, I am in a very similar kind of boat and my dd is the same age and we live in Cheshire too. My dd is pretty much non verbal too but she is different in that she has taken to signing very well. We got no real support until she was 2, but have since done the Hanen course and then have had pretty much weekly NHS SALT since then (so very lucky in that respect). Progress is painfully slow, but at last we are getting some attempts at sounds in isolation. I am very positive about her eventual future (she is very bright) but do worry a lot with school looming around the corner. Our application has just gone in for Cheshire's individual pupil funding and I have just requested a statement (probably should have sooner). We have no diagnosis either and don't know if we will get one and if it actually would help. I was recommended to contact the charity AFASIC from people on here and they are very helpful. I'm not a huge Mumsnetter but wanted to reply to you since we are in the same location so may be able to help each other in the future?? It can be a lonely world when dealing with this. I am devastated that there are no speech units in the LA now, so we are forced to go mainstream. I am also considering ICAN, but only when DD is of an age/confidence level that she won't freak out. Have you considered a home/nursery book? We started one recently and it has been great for giving us topics to talk about (I felt sad reading your comment about walking out in silence). I hope we can get in touch and share notes!

My dd2 5 has no official diagnosis either.

She is hearing impaired (that was diagnosed at 3 )but her language dfficulty is, I've been told, way beyond what is expected for her level of hearing loss. On the other hand she has very clear speech, better actually than it is expected to be. A conundrum...

She did talk a little at 2 & 3 - inventing her own language. Now 5 she has pre-learnt sentences/responses etc. Try to engage her in conversation or talk about things out of context and she is totally lost.

Ed psych report at 4.5 showed significant SL difficulties. Big discrepency between verbal (v low) and perfomance IQ (high). Receptive & expressive disorder of some sort.

Recent Pre-School CELF shows difficulty with sentence structure/recalling sentences

Skills facilitator about to start sessions using Black Sheep Packs. 2 sessions impending. After that it's a matter of funding.
No SALT - been told waiting lists too long as it is and anyway the SF will be doing sessions.

Would ICAN be able to help in this situation and if so, how?

go with what works eg photos but a large part is behavioural. if you get what you want without signing/pointing to a photo then why bother?

vocalising is good if everyone can recognize it but she needs more than yes or no.

signing wasnt big for my ds but it was the PECS and then the communication device which has worked to his strengths.

if photos work and she is motivated by photos - then go for photo books in a big way. with digital cameras is so easy these days.

but you need to focus on what movtivates her and do sessions each day on those eg food or a toy or dVD - my DS loved DVDS so i made sheets with his DVDS - he had to point to which he wanted . and making the things she likes inacessible.

so he HAD to ask by pointing.

look at her day and when does she have to ask for things? when do you make her make choices so she has to communicate by sign/pointing? choose couple things to work on for a week or so, then add more.

it is behavioural...

you have to create times in the day where you know she can point at a photo to ask for the milk versus juice and ignore anything other than the pointing at specific photo to choose - so have them out of reach and have her point which she wants.

as an example...

also not sure how vocalising for open ended questons will help if it isnt clear what she says - surely you mean closed questions?

did you play in the garden at school today ? yes
did you eat brocolli? no
did you sit next to sam? yes

if you asking her "what is your favourite toy?" which is an open ended question and she is vocalising some sounds then that would be meaningless?

if she can reliably answer yes /no and it is clear then you can have a conversation with her about school and what she did -tho clearly it has its limits . but it is the basics for conversation. do you want to watch tv? no do you want to read a book? yes

and combine with photo board of book/tv/garden/singing etc
ultiple forms of communication with visual photos may be way to go

my ds signs yes no toilet and more - these are the essentials...

if she has yes /no clear and reliable and you combine with say photo book - then you could really sit down and talk each day about school and what she has and has not done. who did she see - did you see sam? yes/no did you see kate ? yes no. combined with the photos.

but that would be closed questions - not open ended.

if you go for somehting like an ican assesment then you msut go in asking for not jsut a description of her issues but what strategies are going to work for her? otherwise is waste of money - and i wasted a lot of money when ds was small...bringing someone in to give good strategies and ideas that work - and helping you move forward - and thinking reallife ideas that will work for her - that is the key

does the SALt know what motivates your child? does she get what she likes/dislikes?
if she can now do yes /no - how is the SALT building on that?

not with open ended questions that is for sure...

sorri i sound bolshi - but sometimes we go along with profressionals when really they not moving our child forward.
we need someone who comes up with ideas. someone who knows what makes our child tick and uses that.

you got a child who can say yes/no - but you say you cannot talk about her day...that makes no sense and says to me the SALT maybe isnt guiding you properly - i had some like that too - they were focused on one thing and not the big picture or the practicalities of life.

go to SALT and say - i want to talk to her about her day at school - how can we do that?
what would be good questions to ask her? how can we make sure her answers yes/no are reliable? what should i be asking school to put in her home school notebook?
how can we support this with signing or photos or symbols or ????

SALTS have their place to focus on speech - but with kids with major speech delays you also need an SALT (or sometimes it will be someone else - a communication specialsit, al alternative communciation expert, a holistic behavioural expert - who will really push for communication - not just speech.

my ds does not speak - but he now communicates extremely well - within his limits but he has a voice thru his communication device. there is probably only one SALT from the private ones he saw when eh was small who actually helped him achieve this - they were too focused on speech not communication.

you need both.
soapbox over.

"you got a child who can say yes/no - but you say you cannot talk about her day...that makes no sense..."

This is my dd. She can not talk about her day though I have pre-taught her some lines she can use. This is still not actually talking about her real day though.

She is not focused on 1 thing.
It's either because she can't find the words (expressive: difficulty describing things/word retrieval) or because she doesn't fully understand what she's asked (receptive) or I suspect a mix of both.

Wh- words (questions) are a difficult concept as there isn't 1 standard response - it all depends on the context - and it's these abstractions that can present real difficulties.

cestlavie, it's not always just behavioural. I worked with a child with severe dyspraxia who had age appropriate receptive language who used to hide under a chair and sob if she thought anyone would make her speak. He had such acute anxiety because she knew her attempts to speak wouldn't work so she opted out rather than face further frustration, so there was an element of selective mutism kicking in. This is different to the type of anxiety that kids on the spectrum have when they're not really sure of what's going on/others expectations etc: they're too aware of what's going on and know very well what the expectation is, just know they can't meet it.

With this child I worked with, low pressure activities were the "way in" in the very early stages (e.g. just staying in the room while her family sang a favourite nursery rhyme) but within 2-3 months she was communicating with a dynavox and building up speech. We tried low-tech AAC straight away but she used to just sit there and cry.. she knew what she wanted to say and communicate, she just couldn't, and pictures and photos just seemed to remind her of the fact she couldn't say it as easily as others. The dynavox changed all this.. and once the dynavox was in place, the speech began to take off. However, in the meantime, as her confidence grew, we did work on hiding in a tent and popping out saying "boo!" as an initial trial of a cv syllable. I'm sure if you said that on an internet forum it might seem rubbish too, but it was as good a place to start speech practice as any and, at the time, was the right thing for this child.

It's very hard to know when you read these kinds of details what the rationale is.. this SALT may be doing something very rubbishy or may be doing something brilliant, I can't tell from this info. It sounds like this particular exercise is give the dd a means to be able to make a choice. If that's the only thing she's doing and has plucked that out of mid air, that's not so fantastic.. but a yes/no response is a very functional and powerful way of indicating your needs. Particularly no... it's one of the first things that babies communicate because of this. If the OP's dd is not interested in PECs/photos at the moment and sign isn't working, a yes-no response is pretty crucial in terms of finding a way to make choices. It's not a long term thing but it may be the way in right now.

I'm not saying that the OP shouldn't question the professionals. She should - this sounds like she's being given sod all info and meagre reassurances and I think it's appalling.. but I guess it still sounds as though there's a lot going on here and that the issues are pretty complex.. so it's hard to be able to say specifically what will work and what won't right now.

The fact that the paed says she can't sign as this part of her brain is affected makes me wonder: has she had an MRI? Do they think she has lesions in that area of her brain, that this is an acquired childhood language issue e.g. that she had an injury or a stroke or something like that?

Can you tell us more about what they do know about her? What her strengths are? What are weaknesses are? What sorts of tests they've done etc?

chicken

What ican gave us was a real clear pictures of ds strenthgs and weakness.They put it in black and white exactley what they saw and yes it was heartbreaking to read .

But they also did list all his strenths to the report also included a ot report as well as the speech and an Ep report to it ran to 40 pages and 2 page sof tha was recoomendations of what ds needs and they was very very specfic something the nhs salt had not done ,was ds needs a signing unit he needs small class no more than 10 etc also broke down in easy to undertsand terms for Lea ds exact scores in percenatges

They also gave me idears to work on at home for him pecs was not right but by then signing had cliced in after couple of frustrating years

So was loads of weight for me to insist and get a speech unit from the Lea despite ds having lots of othe rproblems