I honestly feel my DS will never talk

(79 Posts)
insideleg Thu 28-Feb-13 18:50:58

I would love some advice from anyone who may have experience with speech delay.

My DS is nearly 2 1/2 and has never said a clear word. He was born 2 months early with severe IUGR and was in NICU for 2 months - this had quite an impact on his physical development but he has now caught up with walking/running/ motor skills etc. Not sure how relevant that is but wanted to include it.

He babbles with mainly 'gah' and 'bah' sounds but simply seems unable to experiment with any other sounds.

We are currently waiting for a drop in session with a local SALT and have also tried the following:

Singing LOTS, rhymes songs etc.
Imaginative play - we lead, he leads etc.
Simplified language - one or two words repeated during play
Sign language - we use about 10 signs regularly with him.
Reading a range of books - some with words and a narrative, some pictures without words which we use to make up a story
We talk lots to him, but then consciously leave spaces after talking to allow a response - aim for 10 seconds.
We avoid saying 'say ...'.

The sounds he makes have been the same for well over a year, and he really doesn't seem to be making any improvement. I am really worried. He understands pretty much everything we say, and can recognise so many objects during reading etc.

During his 2 year check up recently (which was a few months late due to an admin error) the health visitor just said 'he'l talk when he is ready'. It wasn't very helpful.

Sorry this is very long but I was wondering if anyone had any experiences like this? I quite honestly cannot imagine a time when I will be able to have a 2 way conversation with him. Any info or advice would be much appreciated

insideleg Mon 01-Apr-13 20:35:02

Thank you blueberry, have done some but am sure thee are more we can try. Best of luck to anyone with a DC with speech delay x

blondefriend Wed 27-Mar-13 21:49:07

Insideleg,

No real advice here but following post with interest. My DS also had problems at birth (hypoglycaemia, in NICU for 3+ months) followed by feeding and reflux issues. He is now 2.5 years and doesn't speak much at all. Our current words are mama, dada, go (as in ready, steady ...) and a grunting noise (which means Peppa Pig). Like your son he can follow quite detailed instructions and understands a lot but doesn't answer back. He was also delayed physically but seems to have just about caught up now.
We have been under SALT for a year now (from 18 months) but I needed to push and push. Are you still under a pead? We got them to refer us and always get them to push on a regular basis. Without our pead it would have been very difficult, I couldn't even get anyone to see us from SALT when he was 100% tube-fed.
Because of the tube feeding until 10+ months he has never learnt to suck or blow so we have been working on blowing bubbles along with all the other ideas that a previous poster put down.

The most annoying thing for us is that he has used words on one offs and never repeated them. Phrases such as "Yes, please mummy", "thank you", "water please" have all been said and witnessed by others in amazement before mutism strikes again.

Good luck.

amothersplaceisinthewrong Tue 26-Mar-13 16:52:27

My DH did not talk till around three, three and a half. Then came out with a whole sentence according to MIL. My DS was very similar! Both need shutting up to let others get a word in now!!

kelda Tue 26-Mar-13 16:50:26

No, it probably wouldn't have been beneficial to start speech therapy earlier for ds, from what the clinic have said. They said that his speech dyspraxia is very difficult to treat and not to expect leaps in progress.

But there are many speech problems which are simpler to treat and curable.

blueberryupsidedown Fri 22-Mar-13 22:30:15

Insideleg,

OK so here are a few things the st did with us when DS was little.

Blow bubbles, and say 'ready, steady GO' and then blow the bubbles. Then just say 'ready, steady...' and if your DS makes any noises or attempts at saying GO, praise him loads.

Do lots of car noises, train noises, animal noises. If he tries to immitate, praise him loads.

Say Mmmmmmm when he eats. Repeat over and over again and if he tries to say Mmmm, praise.

Stick to simple sentences, say only the key words and repeat loads.

Really try Makaton signs. It is great to help them communicate.

Praise any effort to make any sounds. Play 'fixing' stuff with toy hammers and say bang bang, do lots of boo games. One of DS's first 'word' was 'me me me me' as in the Tomliboos in the Night Garden. So I'd recommend a bit of telly!

Sing some nursery rhymes, then forget one word. Sing Twinkle Twinkle loads of time, then forget the word 'star'. See if he tries to say it, even just a sound, and praise him for trying.

Hope this helps!

insideleg Fri 22-Mar-13 21:48:18

kelda do you feel it would have been beneficial to start therapy earlier? I understand what the therapist is saying about it not having an impact but just feel there must be something I am not doing or ds has special needs which need to be addressed

kelda Fri 22-Mar-13 20:12:29

It sounds incredibly frustrating. We did wait until ds was three before persuing speech therapy because all of our children were late talkers, and one needed grommets.

The number of times people have said:
'he's a boy, boys are slower then girls' NOT RELEVANT
'he's bilingual, bilingual children speak later' NOT TRUE
'Einstein didn't speak until he was three' SO?

I wish they had been right.

insideleg Fri 22-Mar-13 19:50:57

Not been through GP as was told once we had been to see therapist in drop in at library this was the same as a referral. I think my main concern is the 'assessments' by both NHS and independent therapists have been very relaxed and a case of 'he'll learn when he is ready'. My view is that it is very worrying when he has no clear words. No idea where to turn next. I feel so lost and no one is taking me seriously

kelda Fri 22-Mar-13 09:25:33

My ds's therapy has not helped in the way that is expected - but this is because his speech problem is severe, and difficult to treat. He has now on the 'special needs' register because of it and they have recommended that he goes to a SN school.

Have you seen a paediatrician?

Catsdontcare Fri 22-Mar-13 09:04:14

I think I would want a second opinion tbh. Personally I am not a lets wait and see person. Often late talkers do just start of there own accord and catch up fine but for us the speech delay was a sign of other issues so waiting til he was older would have meant he got further behind.

insideleg Thu 21-Mar-13 19:04:17

I was surprised too but not sure what to think, she saw ds in an independent capacity and so duly has nothing to gain? Just very confused. Her point was that she could offer therapy but it would have no impact. I'm wondering has anyone been in this situation where therapy had no impact?

Catsdontcare Wed 20-Mar-13 21:05:52

I'm a little surprised by your assessment with the SALT tbh. DS was much younger than 3.5 when he started with SALT.

HAve you posted on the special needs children section? I know there are a couple of experienced SALTS that post on there regularly and give sound advice.

insideleg Wed 20-Mar-13 21:01:00

Thank you Blueberry it means a lot. Some days I feel I need to relax and wait and see and then I will worry again and wonder if I am doing him a disservice. We are starting to sign but it is slightly tricky getting everyone to do it. We are I suppose in the system but they will not carry out an assessment without him attending three play sessions which end in June. We will then need to wait for further appointments which will be when he is 3 I suppose. What would you do?

blueberryupsidedown Wed 20-Mar-13 20:49:01

The thing with DVD is that it can't really be diagnosed before the child speaks at least a few words.

I really really understand how difficult this phase is. You are doing great, and you are clearly a very good mum, and doing everything you can do. Push for NHS assessment - we have never had to go private, once in the system (although I am pushy...) we received a lot of help.

Do you sign using Makaton? There is quite a lot of evidence that it helps with general communications, can help with speech development (and not slow it down, like some people say...)

insideleg Wed 20-Mar-13 20:27:22

Thanks all. Well it was an hour, and she asked him to do some basic tasks but didn't go into possible weak muscles in face. She said that some children were not ready to talk until they were three and that therapy wouldn't help and would be a waste of money. Apparently only a tiny percentage of children have dyspraxia and this is often misdiagnosed. I just don't know what to do next. This was a hundred pounds. I am really worried. She suggested things were already do.

blueberryupsidedown Wed 20-Mar-13 19:48:20

Hello to Sendmum, DS also has Verbal Dyspraxia, same age as yours, also loving school and speech getting better. His favorite word now is Awsome (don't ask me where he heard it).

OP, I think that you should look for full assessment from a SALT, and I thought that most will start therapy at 2.5 years old, and under that they can also help with lots of things you can do at home. Have you tried on the NHS?

I am sure someone mentioned here the 'It Takes Two to Talk' book and method. It really helped me communicate better with DS even though it didn't make any real difference...

MariahHairy Wed 20-Mar-13 19:19:24

I think that is very strange hmm

did she do a thorough assessment? what are her findings?

SendMum Wed 20-Mar-13 16:30:43

Sorry I don't want to worry you but that is wrong, the earlier the intervention the better in most cases. My son has verbal dyspraxia and I went through all the worry you are. He is now 5.5 and doing great, perfectly understandable most of the time but still has lots of mispronunciation and funny words he uses. Long words and sentences he still really struggles with but it has not affected him at school at all, in the sense that the other kids understand him and he is happy and confident. He still has regular speech therapy and will for years but he will get there. His reading and letter learning has also been slow but again, he will get there and he LOVES school.
He didn't start talking until he was 3 and it was only at 4-5 that strangers could understand him. I'm not saying your son has verbal dyspraxia and lots of them do just suddenly start talking, but either way he needs speech therapy before 3.5! If it really isn't an option on the nhs in your area (push really hard, which I'm sure you will!) then perhaps you could do one or two sessions privately and get some tips to work on yourself at home. Good luck and try not to worry, my DH always said you don't get many adults who can't talk and he's right! X

insideleg Tue 19-Mar-13 20:58:00

Hello everyone,

DS had his assessment from an independent SALT. She basically said that she was unable to offer therapy until he was nearly 3.5 - does this sound right? Am a little concerned. Any help would be appreciated - just don't know where else to turn

insideleg Fri 08-Mar-13 21:45:30

Hello everyone, it is really reassuring to hear that others have had similar experiences and have got through them - I wasn't sure if I was being a 'pushy' parent by phoning all the local services for help.

Well we have booked an assessment with an independent therapist who sounds great. Fingers crossed it will give us some answers with which we can move forward.

She interestingly said that the majority of children diagnosed with verbal dyspraxia actually don't have it and that some children simply aren't able to talk until 3.5 with or without therapy.

We are definitely going to try the different sounds and noises and see what he can imitate. He does struggle to chew some foods and has recently started dribbling a little, I wonder if that is indicative of poor mouth muscles. We also have the book 'it takes two to talk' which I have read and honestly feel we do lots in that already but it is worth going through again.

Another interesting point the therapist made was that it might be an idea to simplify our strategies - we are trying so many different things that it may be confusing for DS. I am sensing that he can feel my anxiety and I really hate that. The last thing I want is for him to feel pressure but I am so worried about him.

All of your experiences are really interesting so please keep posting! And yes, if anyone else says 'Einstein didn't speak until he was 7' or 'you have to keep talking to him' I will scream!!!

scarlettsmummy2 Fri 08-Mar-13 17:32:27

My now four year old was like this- I was so upset at the time. I know it's hard but some children are just late talkers. The speech therapist said the important thing was their level of understanding- she got scarlett to do little tasks like 'put the dolly under the chair', which she could do fine. Relax, he will get there.

jenduck Fri 08-Mar-13 17:18:36

Watching this thread with interest. DS2 is somewhat younger (23 months today!) but is also pretty non-verbal. He has about 10 'words', but I don't think that anyone outside of us could understand him very easily. So, for example, he says "huh" for hot, "har" for car and a two-toned "ah-hah" for water.

I am hoping that when he has his 2-year development check, in a month or so, he will be referred for a hearing test, as it would put my mind at rest. Today we were at soft play & he didn't respond to his name when I or my friend called him, but they had quite loud music & kids playing. At home, or at toddler groups of about 15 children plus carers he usually responds to his name (unless absorbed in something else!) He will follow instructions, eg if I say "shall we change your nappy?" he potters off & fetches a nappy, without any visual cues.

I find it especially difficult as DS1 was, and still is at 4.2, incredibly advanced with his speaking - he sounds like a little adult now, told me only yesterday he'd have to "run something by Daddy".

Totally understand the feeling of never imagining you'll have a two-way conversation sad

FlipFantasia Fri 08-Mar-13 14:32:30

jeee you're so right about folks that say 'well my little johnny spoke very early but I was always chattering away to him'. Beyond annoying! And insulting...and hurtful...though I wish I had used your retort grin grin

MammaCici Fri 08-Mar-13 12:54:19

I have another story I would like to share. This time it's about DHs friend's son. At aged 3 he wasn't speaking at all and was eventually diagnosed with an unusual form of autism that effects the area of the brain that governs speech. He understood language (both Swedish & Finnish) but couldn't form words himself.
At aged 7, still no words. His parents got him into a school for hearing impared children, even though his hearing is perfect. It's 3 or 4 years down the road now and he speaks now. Pretty much straight away at this school he started making progress. I asked DH how good his speech was now and he just said that he has no trouble understanding him.
I know this boys condition is unusual but I thought the story may be of interest to someone on this thread. His parents are so overjoyed that finally their boy can speak. There is always hope. Incidentally, before speaking he used signs.

jeee Fri 08-Mar-13 12:43:36

My three DDs all had speech delays. DD2 and 3 were classified as having 'severe speech delay' - which effectively meant, as far as I could see, that they couldn't really talk at all at three years old.

In fact, the speech therapist who assessed DD3 explained to us that DD3 was so delayed she couldn't really start speech therapy until she'd been assessed by a paediactrician.

All three had speech therapy. In fact, all three had loads of speech therapy (although unfortunately after each 6 week session they'd have to go back on a waiting list).

I can't tell you not to worry OP - it's inevitable that you do. I worried a lot about my daughters - and I have a family history of severe speech delay. But sometimes a speech delay is simply a speech delay. My DD1 (12) is now classified as G&T at a grammar school. DD2 (9) was described as a high-flier at a recent parents evening. And DD3 (5) was signed off by the speech therapist last year.

Oh, and OP, do feel free to be very rude to anyone who explains to you that their DC spoke very early 'but of course, they spoke to them all the time'. I always wanted to reply 'oh, you mean I shouldn't have locked them in the cupboard under the stairs, a la Harry Potter.'

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