34 month old Ds with speech and language delay/possible autism?

[Mum2prince]

This may be a lengthy post, so thank you in advance for anyone who reads and replies .

My nearly 3 year old Ds has been delayed in reaching his speech and language milestones since he was 18months and I've been concerned about ASD ever since then. He crawled walked and babbled on time and we even thought he was advanced as he would clap at the appropriate time if you sang "if your happy and you know it" at only 6 months. I went to university when he was 9 minths old and my mum looked after him during the day and my DH had him in the evening till I came home 4 days out of the week. He got alot of interaction as he is the 1st grandchild but the TV was always on in the background and he watches it for the entire day ( complete peppa pig addict). I regret this so much and now feel like the crappest mum ever . Fast forward to when he was nearly turning 2 I realised he was more placid than other toddlers his age, very happy boy but no real communication other than playing tickle/chasing games. Although he would comfort you if you were cry ing or hurt from 12months old and still does. His receptive language then was limited to NO, stop and give me a kiss or hug. He also had problems chewing food, he would eat but not swallow and lived on drinking milk. At that point I took him to the gp and got referral for ears, speech therapy and pead.

Audiologist said he passed the test for the most part but wanted him back in 6 months to see how he was because it wasn't completly clear. Pead gave him some toys and said he wasn't showing any pretend play with doll or tea set (he didn't have at home to play with) so was concerned about social communication, but on the other hand could see he had good eye contact and listened to instructions for instance wanted to touch fan but stopped because I gave him "That look" and also sat down when I told him to. She also wanted him to come back in 6months or so.

I found out soon after that i was pregnant and I have hyperemesis graviderum (severe sickness) and was hospitalised often and when i wasn't in hospital I couldn't care for him thank god for my family who took charge and let me rest. It was a really hard time for me not being able to help him though I knew he needed me . After having ds2 I realised ds1 improving, singing every nursery rhyme under the sun, saying some words like baby (his brother), goodbye, good night. He now has about 30 words, the only problem is he won't say the without promoting, I always have to say "what's this ds1" and he will say "apple" for example. But doesn't answer any questions. Doesn't say yes and very rarely says no. He says stop all the time though if he is annoyed by you for example creaming his face before nursery . His receptive language is far better and will respond to what you say woth actions for example do you want a bath? He will go to the bathroom and undress. Do you want a sweet (His multivitamin) will get excited and laugh and wait to receive it.

My main concerns are now his lack of pointing, and his hand leading to what he wants, he will take me to the garden if he wants to play outside, or take me to his play area if he wants me to play with him. He won't point to things of interest outside but will follow a point when i say look at that dog or bird etc. All red flags I know. He goes to nursery every afternoon for 3 hours and soon will be attending 1 full day a week. Nursery seem to think it's just a speech delay as they have seen many cases sometimes worse than ds1 turn out to be just that. But he still won't play with children, will play alongside and will watch them play but won't initiate.

NHS has been useless and he had one block of group speech therapy that turned out to be useless. We then went abroad for the summer for 2 months to visit family. Learnt a few more words not much, still hand leading but receptive language much better at this point following instructions better also.

Nursery have noticed the changed in him, I started to relax more and just help him progress by doing lots of SLT excersises at home with him. Booked him a private speech assesment recently and she says although he is slowly progressing with language she sees the lack of joint attention. He was doing the puzzle and saying pig but was not looking up at her. This has made me worried sick all over again.

Oh and also has a few 'quirks' very rarely wil flap hands when excited but will stop when told to clap instead. Also he has started to line up his Lego and sing "there were 10 in the bed and the little one said roll over" and push them off the table one by one.. don't know if this is pretend play or repetitive play. Still won't pretend play unless prompted though he did pretend play at the private salt appointment. She said she is worried about his eyesight (lazy eye, squints while reading snooping at pictures) also advised me to follow up audiologist. At this point in so concerned I've booked him in for eye and ENT dr probably for beginning of NOV. I have also decided to start 25 hours of ABA therapy as I don't want to wait for his to take ages with diagnosis as he has problems communicating and is still very behind on language. Despite what private salt said (though I'm glad she did as it has now lit fire under my bum to move things along) me and nursery were impressed with his slow but steady progress and just put his odd behaviours down to severe speech and language delay.

Soooo sorry for the long post, I'm just wondering if anyone has any thoughts or has been through something similar. I've been worried sick I'm sure I'll feel better once therapy gets started but right now it hurts to see him so far behind his peers. He's very affectionate and happy (though his frustration when he can't tell me what he wants is heartbreaking) , has no preference for routine. Loves his grandparents, eats okay (won't eat veg) and sleeps well. Still not potty trained though that is due to my laziness as I'm putting it off till Xmas holidays as I've got alot on woth newborn and uni.

@lingle

That’s fascinating OP. I could have written it 11 years ago.
Why is this not known/talked about by professionals? !

“He seems to memorise the songs entirely without knowing what each individual word is or sometimes what is means”
Yes. I bet that is what he is doing. Except I suspect he isn’t “memorising” it’s more that he has come-to-know these songs like you come to know a person.He has a relationship with them and they are part of his relationship with you.
How do you come to know music OP? He may take after you.

“In the bath when I'm washing him and trying to teach him body parts he starts singing 'head,shoulders, knees and toes'. I was told by every salt he's seen that this is progress and they encourage it so we all sing along or even initiate it”

Hmmm, I’m a bit dubious about that...

“ But i feel it's getting in the way if him learning how to speak.. maybe he thinks this is a more fun way to speak? Or maybe because we are so responsive he thinks he is talking, because If u try to communicate with him he won't speak back, he will song.”

Ok so I am not an expert on child development other than my own children and I wish @Moondog was here. But what you describe is 100% familiar and I am now an expert on children’s learning of music. So I’ll go ahead and say I strongly suspect you are right.

“maybe he thinks this is a more fun way to speak? Or maybe because we are so responsive he thinks he is talking, because If u try to communicate with him he won't speak back, he will song”

I really like the idea of “to song” as a verb. It really conveys the phenomenon.

Clearly the singing is communication. We know that all communication is good. And obviously this communication is pretty special and gives you a window into the richness of his emotional and intellectual life. It expresses and reinforces your bond. It’s all good......except....... it may well fulfill his needs and mean he can live happily without learning to understand language in the ordinary way for a bit too long.

If you were to switch heavily from auditory to visual, might that give you the “refresh” you need?

“Chunking”. Isn’t that another word a bit like gestalt? He sounds like he is chunking.

Ah no sorry, seems “chunking” doesn’t mean what I thought.

Yes we had this exactly

“i realised I couldn't even teach him finger puppet excersises as he would just sing "mummy finger, mummy finger where are you" face “palm.

And the amazing memory seems to be a factor too....

@lingle you have once again put this into perspective for me.

'If you were to switch heavily from auditory to visual, might that give you the “refresh” you need?'

It's like a light bulb went on in my head, here I am saying I've tried it all but i have not. He is a visual learner with a good memory so don't know why I didn't think of this earlier. I'm going to give PECS a go, but will wait for the ABA therapist (if I manage to find one at this rate) to guide me and ds through that. I've got alot on atm and I feel so guilty that the anxiety of ds1 problems are consuming he. He has become obsessed with me as of late, wants me to play, eat and sleep with him. And o think it's because he feels no one else understands him like I do , on top of him being so demanding there is the extra pressure of every thing we do having to have some sort of learning, e.g I get a spontaneous hug 'Oh he's affectionate and doesn't seem to have tactile sensory problems' as opposed to he loves me. On top of that i rarely spend time with ds2 unless I'm meeting his needs luckily I have a big family so there's always someone to take over while I cater to ds1 every whim.. doesn't stop the guilt though.

Sorry for the rant.. I went off on a tangent. Was meaning to ask other than PECS what can I do to visually help him learn more.

What is portage? Is it part of NHS ?

Portage is play therapy for pre school aged children, not sure if all of themselves but our portage worker was trained in pecs and introduced that as well @Soumia

Them do not themselves

sounds good mum2prince. You have to circle back around these deceptively simple ideas before you appreciate them (I feel a bit embarrassed that I dismissed stuff the SALTS said when I hadn't really given it time to sink in).

re the constant analysis: my husband said to me "you do the analysis, I'll just be his daddy". That actually worked well, having one person who just enjoyed him (of course it made the responsibility even lonelier too but hey ho). You'll find a way with all that family around you.

Whilst you are waiting to go through all this with the therapist, get a reasonable camera, ideally not digital (have those come back into fashion yet?) and take photos of things that are part of his little life. Get them printed on good quality paper. Stick a bunch in your bag. Show him the photo of the car before you get in the car and do the whole "Car. Car. we're going in the Car now" spiel, etc. I think moondog would say do whatever you do consistently for several weeks before drawing any conclusions. But if you can keep it up, then switch in a new photos to show something different is going to happen. I appreciate he isn't rigid, but I suspect at the moment he's just trusting you all that any change from the norm is ok. What I'm hoping is that he might then realise these individual words have power.
simple photos worked for us but a SALT warned me that for many children they don't because they think "car" only means "my family car".

Re the intensity/demands on time/coping. I found that as I reached new levels of understanding the problem I was focussed on appeared to start solving itself - no doubt I was subtly altering my behaviour without quite realising it.

@moondog just in case she's around. or any other SALTS

@lingle thank you for these great ideas. The simplicity of visual cues, you would think i would have figured it out buy now (my brain is scrambled atm). So I thank you for pushing me I the right direction. I think I have a camera lying around somewhere but don't think it has been used in years. Phones are just as good these days (considering how much they cost!) I will get started on taking pictures and find some sort of app that prints them (Will ask my teenage sister who is always making vision boards etc).

P.s Do internet shops laminate ?? If not where can I get the pictures laminated.

Thanks again to every one on this thread big hugs

I often pray for comfort and peace of mind, and my prayers feel answered each time I open mumsnet

Sorry for all the typos, using my phone.

Hi,

Just wanted to answer your question about laminating visuals - as someone who has spent 5 years making visuals, I suggest you invest in a laminating machine (think ours was £20 in Sainsbury's). Supermarkets also sell the pouches.

We've done loads of things over the years including an A4 piece of coloured card with 2 or 3 velcro strips either vertically or horizontally to stick visuals to. Velcro can be bought in Hobbycraft but I think Screwfix was cheaper. Make sure you get the sticky-backed version - I made the mistake of getting the sew-on one once!

So, print your photo or generic PECS picture, trim to size, laminate, trim, velcro on the back, stick to A4 piece which can be blutacked to the wall or wherever, or loose if you prefer. Some people like to have the laminated cards on a keyring on their belt/bag etc. so they can use commonly-needed pictures out and about.

We also made a "post box" from a cereal box covered in wrapping paper so my son could post the visual card when he'd done whatever was on the card so it was clear that the activity had finished and we were moving on to the next card. This worked really well (except we made the rookie error of forgetting to make it easy to retrieve the cards for the next day! Cue hasty cutting and re-sticking )

Good luck!

@rapid thank you so much for this. It's so helpful I could cry!!! Will do exactly as you suggested and the bit about the post box made me LOL . Thanks again! x

Do you guys do sign language with your kiddos at all?
My son turned 3 in September and we just started adding more signs with great success!

@Mum2prince @lingle

and the other contributors to this thread, just a post to say thank you for the advice, this thread has raised my mood and made me feel hopefully and positive on a down day that only those parents with a speech delay can understand.

Never underestimate just how valuable much your advice is for lost parents down the deep, dark hole of ‘advanced search’ on mumsnet.