Looking for experience of speech delays

[Shells]

Hi, I'm new to these boards, although have been reading quite a few threads. I have a son DS2 with a significant speech delay. He is 3.11 and had almost no speech until 2.6 and then a bunch of nouns and now some basic phrases. His understanding has improved hugely but is still quite basic. He has a SALT (we live in New Zealand as of last year, previously in UK) and some teacher aide support at Kindy (nursery). He's been seen by various Paediatricians over the years in the UK, and here. No one has diagnosed him although ASD has been mentioned several times. I'm interested to hear from other parents of children with speech delays to know how your kids progressed and with what support and did they have other disorders? I am slowly coming to see that he may never catch up with his peers, and I'm ok with it, but I'd like to know more about what will happen.

I'm really pleased to hear that. What good news that your DS has made such progress. Sounds like you've put in HUGE amounts of work yourselves. I feel like I could do so much more. We have a new baby and have moved country and I struggle to find the time. Feels like I'm making excuses. I know how important it is.
What kind of schooling is your DS getting?

My dd could only say about 40 words by time she was 3.5yrs and would not speak at all at nursery. Now 5yrs old she is still behind her peers with some sounds and sentence structures but I would say she has normal vocab.

At 3.5 my DS3 had lots of speech but very very little of it was intelligible - only DS2 really understood what he was saying. He was diagnosed with "a severe phonological disorder with elements of verbal dyspraxia".

Now he's 5.5, at mainstream school with a Statement and 1-1 support for 20 hours a week, and is nearly always intelligible. When he's cross or tired the speech slips again, and sometimes you can see it takes a huge effort from him, but he's done fantastically - he doesn't really need the extra support at school anymore.

BUT this has taken a lot of SALT input, hours of exercises at home, constant reinforcement and correction at home. And he's a very strong-minded, determined boy - so much of his "success" is down to him.

My ds1 had a similar developement to yours. He signed from very young, something that he initiated rather than us. His speech delay never really was explained as such, but he does have dyspraxia, hypermobility syndrome and autistic traits. He also had a salt, for a while.

He has caught up now pretty much, though he is slightly muffled, and the way he speaks is slightly atypical. He chooses different words to what would be expected and phrases slightly oddly. He still forgets common nouns, he seems to have problems retaining language. I was given a worksheet by the salt but tbh haven't really had the time to go through it.

It varies between the paed putting it down to his dyspraxia, or suggesting it is related to asd. We're waiting to see how he progresses over the next year or two.

Ds1 didn't really say anything until he was about 3yrs old. Before that he had one or two made-up words. Milk was "guk", for example. He could also copy a few words in other people's voices and accents. It was a bit like having a toddler-sized parrot.

He started seeing the SALT about a month after his 3rd birthday. He had one session a month and the SALT would give us materials to work on in the meantime. He basically had to start from the very beginning as though learning a foreign language: nouns, verbs, positional language etc. Once he realised what language was actually for he picked it up fairly quickly. He found some aspects very tricky. He referred to himself in the 3rd person for a long time and found things like he/she/his/her very difficult. He'd been at school a while before he got the hang of those.

He was dx'ed with ASD at 3.5yrs. The monthly SALT stopped when he started school. Instead he had an annual SALT assessment to monitor his progress. At 5yrs he'd just about reached a typical level for his age, although his spoken language was still better than his understanding. At 6yrs he was actually about 6mths ahead for his age and was discharged from SALT.

He's now 7yrs and his language is still a little quirky and a little old-fashioned sounding. He sounds like someone who has learned English as a second language using old outdated books. Most people probably wouldn't guess though that he'd ever had any problems with language.

My DS was non verbal til 3.6 then started to speak in single words and some learned but in context phrases. Now he is nearly 4 and is steadily picking up more vocabulary. He can use some baby grammar in that he can make up his own phrases with 'going' or 'gone' and uses them appropriately. I hope he will progress further but as we all know, it's so hard to tell. My brother who has a form of high level ASD did not really talk fully til he was 5 so I am finding myself hoping DS will follow that path but I know there are no guarantees.

hello shells,

my ds is a similar age to yours, he will be 4 in May, so I am going through the process of getting a diagnosis... the consultant paediatrician said ds has asd traits in September last year, but wanted to wait until he is 4 to give a diagnosis.he wants to see how his language has developed (I think), how he has got on in a year at ms nursery etc,

Ds has one to one support at nursery, also an early years support teacher comes in to see him weekly at nursery and work with him, SALT goes in to observe him, poss work with him regularly, we have our next big meeting with all the concerned professionals in a couple of weeks...

my ds has lots of learned phrases, I think he has come on slowly, but surely over the last year... he doesn't speak like his peers at nursery, but he does have the desire to communicate. when he was 2.6 he did a lot of screaming, but he is not so frustrated now.

I am going on a 2 day PECS course in May (we were given some pecs to use and signing classes but DH and I are not good at signing

have you got an hv or good gp you can talk to about getting more support for your ds?

I agree with welovetelegraph poles about a Hanen type approach - that you make a concerted effort to work simple speech into your day to day tasks, and kids learn that way, without you feeling like you have to dedicate lots and lots of time to it that you can't spare.

DS is also 3.11, it took till he was 3.5 for him to be able to say basic 3 word sentences. He has problems with understanding too. He's seen NHS SALT twice (assessment only) and still waiting to see a paed. Suspect his ultimate diagnosis will be with ASD. I've had him see a private SALT 4 times, who has given me loads of useful advice and info to work with him with. DS's language learning is very very similar to what Coppertop has described above with her DS!

When DS was at a similar stage to yours, private SALT advised to start teaching him verbs to help him build up to sentences. So I would play ball with DS, and start off with "ball", then "throw ball" and "mummy throw ball" - this all took several months to get to the 3 word sentence stage. One verb that was very easy to work into everyday conversations was DROP and it's partner, PICK UP.

I can't really say what will happen, as I don't know what will happen with DS, what the future holds is I think the huge question for us all.

Thanks SO much everyone for all your stories. Its really helpful to hear of other kids going through the same stuff (I don't know any, personally). I try not to fixate on the 'what does it mean for the future' because what will be will be, and all that. But its hard. DS is seeing a Paed every six months for monitoring for ASD, and he does show some minor traits, but I suspect its not a big issue for him. I'm going to google Hanen and learn a bit more about that.
Do you all have behaviour problems?We don't have a lot, but I struggle to deal with them (refusing to get in car, roaring in babies ear etc.) as he doesn't respond to any of the conventional time out stuff.
And do yours have 'friendships' with their peers? DS loves his siblings, and quite likes other kids his age, but hasn't really made friends. It feels harder as he gets older.

useful sites for speech problems are:-
www.hanen.org
www.ican.org.uk
www.afasic.org.uk

behaviour - mostly OK, hard for me to tell tbh what is normal for a nearly 4 year old and what isn't as a first time mum

friendships - gets on very well with my friend's DD, seems to be quite fond of a couple of the girls at his nursery, and a few of my long-distance friend's kids. So only the one real friendship, but of course as she gets older, it may not be sustainable.

Thanks for those sites TC. I'm wondering if its hard for you being first time mum with all these issues. I guess, as you say, there's no expectation to live up to. But it must be a double whammy in a way too. You sound very sane about it all. I generally am too, but sometimes feel a bit lost, and get very scared when I think about him at school without enough language and/or skills to cope.

yep " generally am too, but sometimes feel a bit lost, and get very scared when I think about him at school without enough language and/or skills to cope."

That is exactly how I feel at the moment. Befuddled by the system and endless waiting list - DS isn't due to see an education psychologist (seems to be head honcho in terms of support at school etc) until probably August, when he starts school in September.

Thats crap TC. Way too late. I do feel lucky to be in NZ as services aren't so pressured and also he doesn't have to start school for at least another year, and possibly til he's six so we're lucky.
Does the school have other SN kids? Are they supportive? The school that DS1 went to in London last year before we left was pretty good like that, but I know that not all of them are. Sounds like some of the other posters here get lots of support too so thats heartening, although I guess it all depends on your borough etc. etc.

The school seems to be pretty used to kids with special needs and language problems, the nursery has had kids start at 3.5 with no speech at all, so I think they are reasonably supportive. But I do need to set up a meeting with them to try and get some proper feedback as to what we both need to work on with DS. Finding schools to apply to was quite horrid though, as the local early years service wouldn't give me any proper advice, just told me that all m/s schools deal with all special needs these days , so I had to grill various heads/sencos etc about what they did with kids with language problems. One teacher I spoke to said "dunno - that's the Teaching Assistants who deal with that" .

Its such hard work isn't it. I really feel we're on our own most of the time and I'm a reasonably confident person. It must be so hard if you're not.

TC, I can't bring up the second or third websites you recommended. Have you tried them lately?

the websites work fine for me, and i double checked the urls last night before i posted anyway. how weird you can't access them...

yes, me too to the feeling alone. I went to the local support group for parents of kids with ASD and social/communication disorders a few months ago - that left me feeling more left out - because Ds has some speech and can play with baby toys appropriately, the other mums were really kind of doubtful about why i thought he could have asd, they were nice but patronising - they took line well he's only got language problems, but you can come back to the group if you want.

I feel really ambivalent about support groups too. I don't get much support from mums with NT kids. They're nice, but don't really get it. But I feel like a bit of a fraud going to a full-on SN group for just the reasons you've said. DS2 can talk a bit, and plays reasonably 'normally', he's just very very behind in his language and is hard to communicate with.
Ok. Websites working now. Me doing something wrong.

Mums I meet online or knew before DS difficulties became apparent tend to be fine - but it's very hard with toddler group type mums that I meet for the first time. Also DS is at the age where it's awkward going to some mainstream groups - if it's just some mum with a franchise running a music/dance whatever group, then I don't feel comfortable that they will be understanding of DS language problems. e.g my good friend has a daughter who goes to a disco dance class - but you have to leave the children - and because of DS language problems I don't want to leave DS with someone who isn't trained in dealing with kids with communication problems. I've not been to any groups with DS since we moved house in December .

I don't tend to do those groups either. One music class we used to do (he loves music) had a teacher who just couldnt' get her head around the fact that we wasn't going to sit down and do like the others all the time, and it was just too stressful. And the songs were too hard! I figure now that kindy meets his needs to be out there with others and the rest of the time he can be home with me, or with good friends. You don't need the extra stress of other people's misunderstanding.

exactly the way I feel about socialising! We seem to have a lot of common ground, do you do e-mail/msn/facebook to chat a bit off board?

email definitely. although obviously the time difference makes it a bit stilted. we're 13 hours ahead of you at the moment, til clocks change.
michdotbirch@hotmaildotcom

got it thanks.