Non stop googling and worrying about my ds ....

[SadieChanges]

He is 19 months

No talking but noises like car , yeh , gee ,
No pointing
Claps but only when annoyed
No waving
Doesn't understand things really eg hv asked if you say " fetch your shoes "

Compared to his peers he seems so different , he is really hard to control. It's so difficult that he doesn't understand eg at home I say do you want a drinky and he will get excited at it as he can see the drink but at toddler group as its in another room has a tantrum because he doesn't understand the words so I have to wrestle him to the other room.

He is referred to a paediatrician but I have been waiting a month now.

He walked at 10 months and physically very active infact he rarely stops it's all the communcation side I worry about.

It was last summer he started babbling and now summer is nearly here and he still isn't talking I can't believe it. :(
Any advice or help would be very appreciated. Thanks.

Sounds like my ds, he just trashes everything , whatever is in the craft table he throws on the floor and runs off with.

I bought him a sand /water table but he tries to jump in it like his paddling pool. He has no sense of danger so I'm constantly alert to him hurting himself . His latest thing is spinning on the spot and then he fell and banged his head. I was bf dd at the time. It's so hard with a tiny baby as well. However it's all my own fault for having them I know they didn't ask to be born. It's just a shame I have no support here but I guess I will have to get on with it like I normally do. It's just a bad day.

A list i made so i can remember everything about ds for gp and any other healthcare professionals . My hv seems to think he is just being a boy but when I list it all it doesn't feel like that.

Doesn't talk
Doesn't point
Doesn't wave
Only claps when frustrated
Doesn't understand simple commands
Shouts
Puts fingers in ears
Flaps hands
Spins in circles
Pulling at clothes
Scratching skin
Always active to point of overheating and having to leave groups extremely distressed
Plays with things that aren't toys at groups much more than other children
Doesn't like to participate in group activities eg sing song at playgroup
Enjoys matching items up , letters and numbers on bricks.
Often doesn't respond to his name , seems in his own little world.
Started to spit drinks & food back out down self.

Did you have a better day yesterday? Any joy on the GP's referral?

They can keep you waiting for ages to see the paed and then even longer if an assessment is needed for any sort of diagnosis down the line.

Can you ask your HV about what speech and language therapy or portage is available in your area while you wait?

Hi schobe, yes we had a better day yest. I just put blocks and shapes on his table outside and we kept popping out for playtimes in between feeding dd and nappies etc as I was waiting in for a delivery. He thought it was great as he got to play with my posh Lakeland pegs!

The GP checked his ears couldn't see any immediate issue but had referred me to the ENT specialist at the hospital and mentioned his delays on the referral letter he typed while I was there. I see the HV tomorrow so will ask about his referral to the paediatrician.

Sorry I forgot to say yes I will ask what speech therapy is available if the referral is going to take ages. Thanks.

Latest update is HV didn't know how to chase the referral ???! Just said to keep waiting . Looked into speech classes but they all in the week daytime I have no support here so can't really take dd with me as she just cries in her pram if stationary .

Also I think this is a daft question but gp gave me the referral letter plus a page where amonst other things it says interpreter yes no. I shoved it in my bag. I'm now worrying im supposed to send it! Would he do that or is it just a copy for me?

Sorry SC, I didn't see this. Hope you're ok.

I think the GP would have just given you a copy. But phone and ask next week - it will set your mind at rest. Can you ask there about the referral to the paed? Perhaps they can check it is on your DS' notes and suggest how it could be chased? HV sounds unhelpful, s/he could at least try to find out possible waiting times for you I think.

Did you look into these books that I think someone mentioned before?

more than words
two to talk

I think 'More than words' is better and more comprehensive but it is specifically for children with ASD so might seem a bit frightening (I'm not at all saying your DS has ASD, but I think you're getting more for your money with that book). It takes two to talk is friendlier!

They are expensive but do crop up on ebay sometimes.

Yes I looked into the books and the cheapest was £60, I will keep checking on eBay for them , didn't realise they would cost so much!

Total of just under £39 using my links. Still expensive I know, but better than 60.

If you do a search on ebay, you can tick a box so that ebay will send you emails when a new item under that search appears.

I never cease to be outraged that every single book or piece of equipment that may actually help our DC with delay or additonal needs costs about 200% more than it should imo.

One day, maybe I'll start an ethical special needs supplies business

I got More Than Words from the local library, they had to order it in, so only cost me £2.85 and I extended the loan twice, without any cost. x

Chase the referral yourself, make it clear you will take any appointment even last minute cancelations.

Sadie, my DS will be 3 in July, and sounds somewhat similiar. I kicked off with the health visitor last October. He was seen by a SALT in late November for an initial referral. The concern centred more round the fact that he was giving no indication he understood a lot of basic commands, and that's more indicative of something wrong than just not talking. He had a hearing test in December, was referred for another hearing test in January, and they diagnosed moderate hearing loss due to glue ear. He had also been putting his hand up to his ear a lot.
He isn't a good sleeper - it's only recently he has started going through the night and that's with DH sleeping with him, but he was going through stages of waking up in the middle of the night howling in real distress. I think now it was his ears.
Also, the tantrums in the last year were just ferocious. I really, really dreaded coming home from work as he just seemed to fly into a screaming fit at the drop of a hat. It didn't help that I was pregnant and seriously busy at work.
We met up with friends of DH's last October - their little girl is 7 weeks older than DS, and we came home that day and nearly cried. We'd had a shit night with DS before, and he had been a nightmare all day - he just wouldn't co-operate with us in anything. I knew DS's speech was an issue then, but when we heard their little girl was having full blown conversations, it brought it home to just how far behind he was.
Anyway, he had grommets in early March, 2 weeks before his sister arrived.
The SALT saw him in Feb, was due to come back in April, but she left or is out or something, so he has been given a new one, who met us a few weeks ago. The SALT in November referred him for a paediatric assessment, but it took ages to get the date through - our GP sat on the referral for 2 months so it had to be chased up, it's happening next Thursday, and the SALT is back into creche the next day to see him.
Don't get too worried about how he plays. DS loves putting slotting things together and lining things up neatly. Once he is engrossed in an activity, he is nearly dead to the world. Even now, when I know his hearing is ok, I sometimes call him or tap him and sometimes he doesn't respond as he's just ignoring me. It's only recently he has started to partake in group activities at creche, and he still is into more "parallel play" rather than a lot of interaction, but they said in that respect it's normal for his age. I do think boys tend to play with things more than veer towards people orientated games.
His speech is still slow, but we think he's understanding much more, he is calmer beyond belief since the operation, and seems much happer in himself.
I do understand the frustration - he's gotten so clever at using non verbal ways of communicating what he needs. We say "juice" about 50 times a day when he pulls us to get a drink and he still just roars if we delay getting him what he wants rather than attempt to say the word, and creche also agree that he is just not a coaxable child.
He is young yet, but it's no harm to get things rolling just in case. I regret leaving it so long with DS, as the lack of speech had niggled at me for a while, but there is a history in both sides of the family of the males being slow to talk.
Good luck.

Just an update it's 10 weeks since I got referred and still nothing re the paediatrician. I'm also still waiting for a hearing test . I have double checked they say it can be up to 18 weeks for the paediatrician.

I feel a bit alone like you just get left, I was thinking when you have a newborn their hearing is tested on day one etc. my ds is nearly 21 months no talking, pointing, waving , not understanding plus other stuff but nobody seems to care!

Today has been hard he has started spitting food and drink back down himself. He also had a mega tantrum just going to the park then when we returned I wash his hands in a large jug and he thre it up the walls and all over himself. Is that usual behaviour , he has also started shaking his head and moving his hands quickly and squeaking /screaming a lot. People have started looking at him.

I just hope I don't have to wait another 8 weeks as he will nearly be two then and I can't see anything changing and he is so behind his peers.

I hadn't seen this thread before. Sorry you are still waiting for any progress. If you know where you have been referred (eg we were referred to a paed at our local Social Communicaiton Clinic) you can chase it up yourself directly. Plead for them to fit you in if they have a cancellation.

In the meantime it would definitely be worth looking into ways to help him.

Have you looked into ABA at all? Applied Behavioural Analysis (sometimes known as Early Instensive Behavioural Intervention). It is a well-known and proven successful form of intervention. Many of us here on this board use it for our children with great success.

Hi there,
I am new to these boards. My DD is coming up to 4 and has always been behind her peers and still is.
Have you got a number for the peadiatrician? Do you know where they are based? It might be worth a call and to let them know you are still waiting. I was offered a cancellation and took it and got seen quickly that way.

I know you are worried and it is an awful time. But it is quite a long road, but at least you are on that road. Many, many parents wouldn't be yet.

If I could give you any advice (and I could do with taking this advice myself!) try and forget what his peers are doing and what you think he should be doing (and what the books say he should be doing) and parent him in the way that he needs. Try and think about his triggers for getting upset and avoid them. If there are activities that he enjoys and is calm doing then let him do them.

I remember going to see a HV as my daughter was waking in the night and screaming and she told me to leave her to it. I thought she had to be having a laugh. My DD would just carry on screaming. For hours. Needless to say I ignored that advice and I am so glad I did. My DD needs to be parented i her way.

It is harder and it is demoralising and it is worrying, but you are doing brilliantly simply because you are not ignoring the problems.

:)

bialy - can I ask how you implement ABA? Is there a book you can recommend? I am very interested in learning about this, but don't really know where to start. Thanks.

There's a very good book by Mary Lynch Barbera 'The Verbal Behaviour Approach' (can get from amazon) which is a good introduction. This is her website here.

Also Robert Schramm 'Motivation and Reinforcement: Turning the Tables on Autism', which is a brilliant, if sometimes a bit technical, overview.

This website is quite a useful overview, though is a bit focussed on 'discrete trial training' (work done at a tabletop) - in reality most ABA teaching is done in the natural environment, so done through play at an early age. With skillful tutors the child won't realise any teaching is going on.

It is worth searching the archives here, there is loads of information.

Please ask anything more, happy to help.

Hi all. Thanks for all the help, advice and book recommendations. Well we finally had the paediatrician appointment today.
Basically she said they would be concerned about asd and sensory issues , he will be assessed just after he is 2. He had a meltdown in there so it was quite stressful. I managed not to cry in there or in car , dh came and 4 month dd. dh had to go to work so just me and dcs now no family here or close friends to talk to all live 200 miles away. Will call family tonight

I feel very upset . Another 3 months until the next appointment. I will buy its takes two to talk, I was in denial but I think it best if I do something constructive or I will fall to pieces.

So many of us here know exactly how you feel. Well done for getting through today - and it's good you've finally seen someone. I know it is really frustrating having to wait even longer now till your next appt, but there is lots you can do to help your ds while you wait.

Know exactly what you mean about doing something (that's why we started ABA even before ds had a dx). The Hanen books will definitely help.

Some other thigns you can do to help make daily life a little bit less stressful, and to help ds with communication:

Use visual aids as suggested before, and use them as well as the word when you say something (eg say 'drink?' while you hold up his cup)

Keep language very simple - no unnecessary words in sentances, don't repeatedly use his name in a sentance. To get his attention when you're talking to him, go up to him and in his vision, and down on his level, when you speak to him.

If groups etc are stressful for both of you, don't go! Socialising is important to children but he might not benefit from that aspect that much anyway as the groups are ime so noisy and chaotic so may just overload him (hence the tantrums). If you can, try and organise smaller playdates with your friends with similar age children. Outdoors especially, so there's no 'pressure' on him or you to keep things calm!

Whenever he does any kind of communication or interaction which is what you want (even small things like coming when you ask, looking at you when you talk to him, giving you something, playing with you, engaging with you or others, etc) give him massive rewards for it - whatever he likes best (food, drink, tickles, throwing in the air, whatever). It's the basic Supernanny principle - ignore the 'bad' (I don't mean naughty, I mean inappropriate), and praise the 'good'. The message is that he gets more of your attention/fun/rewards from engaging with you than he does from not doing so.

I really would recommend the ABA books mentioned earlier, too.

But for now, give yourself a break - I hope it turns out not to be the case, but your world might be turned upside down from how you imagined things to be, and esp with a young baby to look after too, you need some looking after too. Take as long as you need to cry, have a big glass of wine (or whatever) tonight. As someone said earlier, imagine a group of internet strangers giving you a big hug - we have all been there.

Hi Sadie
My DS (3.7) has just been diagnosed with ASD, and we first raised concerns when he was about 19 months. It is great that you have already got your DS into "the system" and are finding ways to help him. I know it's upsetting when a professional confirms your fears about your child's development and I think you are doing absolutely the right thing in wanting to do something constructive.

After asking for advice on this board, I bought It Takes Two to Talk and More than Words, and found both very useful in helping me communicate with my DS. I don't know how much understanding of language your DS has, but I would say that mine had almost none at 21 months. I realised that he wasn't picking up language like other children, just by being exposed to it so I had to teach him each individual noun by showing him something and saying its name several times a day. While he was sitting in his high chair, I would name ten or so common things in the kitchin, particularly things he was interested in, like the washing machine. One day I said "where's the washing machine?" and he pointed to it, which felt like a real break through (I had to teach him to point as well, just be repetatively showing him), and he slowly built up his knowledge of words from there.

It is tough and very stressful, particularly when you have other children to consider, but as bialy said we have all been there, so keep posting whenever you need support.

As zen says, you can teach things like pointing, as well as teaching language.

You can also try doing things hand-over-hand to reinforce the meaning of things - eg if you ask him to get his shoes and he doesn't respond, take him by the hand to his shoes, hold his hand to them saying "shoes" and pick them up with him together. Then practice it again, and when he does it on his own, go crazy with rewards.