speech delay - 3.9 ds

[farming4]

Hi my ds has a severe speech delay - 6 words (mama, eyax(Alex brother) yes, no, woof woof,wow) can say vowel sounds and some constanants but can't link them. Understanding been assessed as 5-6yrs. Very keen to communicate with Makaton (will string 3signs together so understands about sentances etc) No other problems apart from epilepsy (controlled).

Basically just wondering what the future holds for wee man cos I'm just starting down the line of getting him statemented before he starts school in Sept and have managed to get myself into a really dark place re his future. Sorry if I sound like I'm feeling sorry for myself but I'm just scared for my ds:(

not an expert by any means but one of pre cursors of being a good reader is knowing the names of alphabet letters before starting school so no harm in working on this if he can make the sounds or approximation.

make sure you get specialist help from school. he should be entitled to speech therapy so make sure this is included in his statement.

wishing you luck

Hi
my ds is 3.1 and has severe speech delay - he finds it really difficult to say constanants - so he is hard to understand. Like your son he has taken Makaton on board and that is great.
Does he have any speech therapy? If not contact your lea and refer yourself to a therapist. My ds has a link therapist who is making a referal to see a specialist. Does he go to nursery atm? He could be offered speech therapy before sch.

Big hugs to you - I get down sometimes about ds' lack of language - but there are people out there to help him. Where are you btw?

Hi my DS is 3.4 and sever speech delay too. But he has been having SALT now for 14 months. He now has one to one salt ever week, we are very lucky! He is also hopefully going to a speech unit in september.

It can get you down so so much. I have this bright beautiful boy that is interested in everything, except he can't talk he is very communicative though, even though he has not really gotten into makaton - though he will use signs that he feels very useful to him.

He is currently starting slightly on cued articulation - which i myself will prob be taking further than the SALT as they don;t have any resources but it's been fab and really helped him. It was develloped by a lovely lady called Jane Passy in the 80's for severely speech disabled children.

I chat to janx too - feel free to ask any questions, it can be so daunting and so upsetting sometimes when they are in frustrating situations

kalo - if they have very severe speech delay, just the basics of a sound can be very very hard. My DS has to have one sound over and over and over again - he gets very tired with it all, then he can have more sounds added.

So tttttttttt over and over

then

t oo
t ee
t ahhh

etc, until hopfully there is no gap between the initial consonant and sound

if that makes sense

Hi we've been having salt for the last 15 mths but just don't seem to be getting anywhere - at the stage you describe maxybrown but he just dosen't seem to "get" it iykwim. Next thing is to get his statement for school sorted.

Janx I'm in the cotswolds - what about you?

lady do you want to email me? [email protected] your son sounds very similar to mine although what he can say is quite clear - there is just so very little of it! he has just started to be able to pout some words together - not in a proper sentence, but he can say "Happy me mummy" but big gaps between each word - almost robotic! Individual sounds can be made (DS cannot say all sounds - he has no sounds form the back of his throat - either in isolation or in words plus many others) plus it depends which vowels follow the sounds - he can now say bye (though it is slightly distorted - more like a west country version of boy lol) but he wouldn't be able to say brown. he has a good go at blue - it is more like boooo and some words are starting to sound like each other - and if he is in the wrong mood and you get it wwrong - sheesh!

It is not to be underestimated, it can be very stressful and tiring for all concerned. I rarely see other people during the day aside from DS (have no friends where we live now) and I find that incredibly hard as most of my day is spent repeating what he says to confirm what he said or trying to translate and dealing with a very frustrated little boy when I get it wrong - sometimes I never find out what the problem is and he sometimes walks away form me shaking his head

farming - what sort of SALT is he getting? DS had an exxpressive speech group which I found horrific and tbh, so did DS - it was far too slow for him and he was with a child who was very much attached to his Mum (mine is extremely confident at present!) and one who was lovely but had to keep having her attention brought back to the group - found that all very stressful - it was also at 3pm til 4 which I found most odd as we wouldn't expect to be able to get anything out of school age children at that time, let alone 2 year olds. He then saw the main SALT for check ups who did couple of little tests with him and then she sent us over to where we are now. She did originally want him to do another expressive speech session - mainly because I THINK that there was no space for him where he currently is and they didn't want to do nothing. Anyway he has had one on one SAlt (she is lovely) since September, started when he was still 2. It is very intense and he gets very tired and bored - but she knows this and adjusts each session accordingly. He has come on leas since having the one on one

farming4 I have been where you are.

DD1 had a similar number of words at that age, and always had understanding assessed way beyond her actual age.

She is now 5.5. had talks all the time (honestly )though it has been a very long hard struggle. It is still very obvious that she does not speak like other 5 year olds and she does not have the complete range of speech sounds, but she can make herself understood and at least with me she can ask questions and find out what she wants to know.
Dd1 taught herself makaton from watching TV when she was 2-3 and I regret that I didn't encourage it at the time. When she started school last year ( in a Speech & Language Unit) they immediately started with Makaton and it helped massively.

Farming - am in London - shame we are not all nearer. Ds has been having therapy in group format for about a year - but not continuous. We have games to play with him - to pracitce the t sound and the b sound at the moment....He cannot do the t sound at all - but the b sound is more successful His clearest words are mummy, daddy, more, bum. He is a very bright boy - but becoming a bit of a loner at nursery as the other children don't understand him. He is big for his age, which makes it harder as the younger children think he is older. I have a dd who spoke very early and very articulately - so one end of the spectrum to the other.

We have just started potty training - will report back. Now he has turned three I am going to start pushing for more (puts my assertive hat on)
Maxy - did you get a statement to get J into speech unit?

Jan - no as far as I know, he will not need a ststaement for the speech unit. Am back with SALT on Wednesday, so thanks for that as you have reminded me to ask!

I haven't pushed the makaton so much because

-only I would understand him anyway, DH would know some but not enough to understand DS anyway

• when we went to the speech unit, they obviously don't use it much (current teacher not keen on signing though she will prob be gone when DS starts - if he gets a place this is!) as I was asking what the signs were for certain things and they weren't sure so sort of made me think "what's the point" - that's prob made the unit sound really bad and it isn't but my DS is VERY communicative in his own way - but I'll say one thing, when I walked in there it was like a breath of fresh air- DS went straight in to play and no one batted an eylid at him and his funny sounds, whereas usually he is the object of fascination for children!

I think my son is a bit quirky - I am not trying to find extra things "wrong" with him, but he def has some sensory issues and 18 years of working with young children I have seen all sorts! DH is a teacher and he thinks there is "something" we are also under a paed who he has seen once but back there on 27th Jan. Brushing his teeth - I may as well be puling them out, same for washing hair - sometimes the screams are deafening and he is so so placid normally! Janx has met him and sure she would not think he was too odd lol. He also has huge problems with certain foods in his mouth and textures, even though he had no feeding issues and no issues with solids - he is a very very fussy eater now and survives on very little! I can't quite put my finger on what it is, but there some quirky moments, on that both DH and I agree!!

jANX HOP POTTY TRAINGIN GOING OK TOO! oops caps sorry - I thought DS would also be in nappies when he started at school nursery as he showed no signs at all, then one day just sorted it all out himself day and night - really weird.

Farming, I too have been where you are now.

DD3 only said "Barbie duck and no" (obviously the important words in life - Barbie before Mummy or Daddy)when she started school! She had a statement prior to starting and went to a specialist unit. She could only say vowel sounds until she was about 7 years old.

I would not worry at all about the reading aspect, that will come when your DS is ready, you dont need to add any extras that are not important now.

We tried Makaton, but DD seemed to have her own version of acting out words to make us understand and appeared to have a "couldnt care less" attitude towards anyone else understanding her.

It was tough going, but DD has always been a very happy girl and we have always said that her sunny personality would get her far in life. When DD started to be able to talk and to be understood it was as if she was making up for her 7+ years of silence! She just did not stop. Even now at 16 years old she has verbal diarrhoea frequently.

Can your son move his lips? Did he dribble a lot as a baby? Can he purse his lips as when you blow a kiss? If he cant move his lips too well it would be a good start to get him to start pulling faces and try to move his lips. DD was totally incapable of any mouth/lips movement. She loved the face pulling exercises, though!

As for the future, don't worry. I worried that DD would never be a "normal" child/teenager/adult. Life is good for her now. Talking is not a problem. She does have dyslexia, which I think is probably linked in some way, so has struggled academically, but she is happy. None of her friends see any difference between her and them. Even now she can get some words muddled a bit, some sounds not quite right, but she laughs it off and everyone accepts her as she is.

A good relationship with the speech therapist is important and you may have to be a bit bullish to get what you need to for your DS, but fight for him and his future. If you don't, no-one else will!!
Good luck!!

Hi guys - thanks for all the replies - it helps to know we aren't the only ones going through this. At the moment we have a lovely salt who we see every 2 weeks and ds really likes - trouble is that she is off on maternity leave in Feb so not sure after that. Pre-school are fantastic and use Makaton as a matter of course during the school day with all the other kids encouraged to join in as well - ds doesn't appear to have friend problems at the mo - in fact is constantly having invites to play - its the parents I have problems with cos their dcs are going home using the signs! Most seem to understand but theres always one!

Positiveattitude ds can do the full range of lip and mouth movements, no dribbling etc but seems to struggle if you ask him to try a certain letter shape - you can see hes really trying but his mouth won't obey him.

one more question as regards school - should I be pushing for a language unit or will it be possible to get a salt 1:1 for ms? assuming I get the statement ds needs? thanks

justabout - I have only heard this mentioned on here - hence me already saying I am going to ask on wednesday! But seeing as he is already down for a place to be assessed at easter for it (though already been told by the speech therapist there that he he is very high priority) I would have thought that someone will mention this to me. He could only be referred for it in Sept just gone so early stages yet anyhow - like I say we see SALT on a weekly basis and she gave me her direct number to contact her anytime. There is nothing more I can do about the unit til Easter now.

I don't know whether this will help anyone, but my two elder DD had a severe speech delay, and have done well at school (they're now 10 and 7). They were lucky in that they were both autumn birthdays, which gave them that extra year. I too was enormously delayed (didn't talk when I started school), and have made up for it ever since. My third DD is also very slow, and is currently having speech therapy.

It is possible to catch up - but I admit to being very sensitive on the whole issue of delayed speech. I burst into tears a few months ago when a government health advisor said delayed speech was caused by too much TV, and not enough interaction. Okay, I know she wasn't aiming it at me, but it felt like a direct personal attack.

But children can, and do, catch up. Honestly. Sometimes they're slower, sometimes they're much, much slower.

ooh Jeee I would have too! My son tries so so hard to speak and licks his lips (can do that now lol) sometimes first to try and get words out - you can see him physically struggling. sigh.

When I first mentioned to HVT that DS was not talking, they sent the NNEB round (my job) and she told me it was because he plays with cars a lot - WTF?? She said there was very little play value. I felt like telling her my Grandad probably had not toys at all to play with and still mamaged to talk - as did the rest of the population!

Second time she came round I got the tea set out "oh" sh says "i see you have all the right toys" - they had never met me or DS before that meeting

I've never met anyone with a speech delayed child who hadn't blamed themselves at some point
Even long after DD1 was diagnosed with verbal dyspraxia et al my MIL still maintained I didn't take her to enough toddler groups...

So just for the record, if your child has a S & L disorder, IT IS NOT YOUR FAULT FOR LETTING THEM WATCH TV

OK DS2 who is now 3 y 8 months has been going to a special Language Unit in a school based nursery. It's an excellent service without our Borough (Redbridge in london). He has speech therapy many times a week and also other support with his language within the nursery.

He had (and still has) problems with constanants and the ST does little games with him to help him make the difference with sounds like K and G so there is a board with Cars and Goats and Keys and other words starting with the specific sounds. Just to try and encourage him to make the difference between the sounds.

All of his vowels sounds pretty much like O so he will say 'I Wool' instead of I Will'. They work on the specific sounds.

At 3 he only had 4 words (yes, no, mum, and woof). At 3 y 8 m he has hundreds of words but doesn't pronounce them well and really struggles to express himself. He can say 'look mummy a car' (sounds like 'laak mammy a gar') but he would never express how he feels, what he thinks, or have creative play with language.

Oh yes potty training. We started with DS was just under 3 and it took us 6 months to be reliable. We took his nappy off for first night yesterday and dry this morning. It took a lot of patience especially as we did it in about 2 weeks with DS1 !!! Show him a sign or a sound that goes with it (you don't have to use any 'real' sign, we used our own made up one. There was a little pig on DS' potty so we used the Makaton sign for pig). And we used SSS for wees and Po for poops. He got it in the end.

The unit I am talking about is very intensive and I think it's unique. It's a school-based nursery and DS goes there 5 mornings a week. There are 60 children in total in the morning, and 8 of them have expressive speech delay. They have 2 speech therapists and all the teachers have been specially trained. It's in South Woodford East London and is part of Churchfields school. You child has to be refered by a speech therapist and have various tests and assessments before being accepted.

Farming, I would take the time to find out what facilities there are in you area and what is good and what is perhaps not so good and choose which one is best for your DS. As I said before our DD went to a fantastic unit and did really well, but I am well aware that in other areas the units are not all that brilliant, so a MS school with good SALT input may work well.

I totally agree that we are all made to feel guilty at some time. I have sat in meetings where "lack of good parenting" has been mentioned and i have to say I went absolutely ape. I am a good mum to 5 DC and I will not allow anyone to blame me! I have always played with all my children and talked non stop to them. I have 5 DC, so it was not through lack of child interaction, or any other reason the "experts" may blame!

I must say that I take heart in the fact that my dp has very severe dyslexia and it runs in the boys in his family. He had speech therapy for years and couldn't read until he was 10. He is now lectures for post grads.
I actually don't blame myself as I have a dd that had no speech problems and my parenting skills have not differed that much between the two. However I find the world of paeds, speech therapists and the like so confusing and I am amazed at how much I have had to do to get anyone to listen to me...it has made me more assertive

I think that is very good advice re the schools. I automatically assumed my ds would follow on the same sch route as his sister, but now am beginning to wonder whether he needs are best met somewhere else.
I do get down about it all at times - so really good to have people to share it with.
First full day of potty training - he is very keen - have had a few accidents today - but is loving his new big boy toy story 3 pants