Looking for thoughts/ideas re DS2

[HHH3]

I'd like to start by firstly apologising as this is likely to be quite long. And also to say that I absolutely don't want/expect anyone to try to diagnose over the internet. But over a long period I've had so many people tell me that DS2 is 'fine' or 'at the late end of normal' that I've got to the point where I'm confused and doubting myself and often don't know what is 'normal' and what isn't.

So...

DS2 is 2.3. He's a very happy and loving little boy. I've had concerns about him since he was tiny but for a long time I couldn't put my finger on what it was (and even now when I look back I still don't know what it was).

As he started to reach milestones he was consistently hitting them just within what's considered 'normal'. He sat at 7/8 months, commando crawled at 10 months, crawled properly at 11/12 months and walked at a few days short of 18 months.

At his 1 year check he was behind on everything except fine motor skills. I was told he's fine and would catch up. At his 2 year check he was significantly behind on everything but fine motor skills (which were actually advanced). The HV came to do an 'emotional social' questionnaire which he just scraped through but a lot of the questions didn't really apply to him. As a result she wouldn't refer him.

Physically he's got a very big head and a very prominent forehead. He's also rarely does a normal poo (sorry for tmi but they're usually quite squishy). He also struggles with steps. We live in a ground floor flat so don't often do flights of stairs but even stepping up or down a kerb is hard for him and he either needs help or takes a very long time to build up to taking the step.

His speech is very, very delayed. He has approx 10 words and most of those only I understand. I've done loads of research and I can't find anything that fits with his delay and the way he talks.
He doesn't like other children although this is starting to get better.
He doesn't like getting messy.
He doesn't like people (other than me and DS1) walking behind him.
If we're walking by a wall he'll always walk right up against it.
He still puts everything in his mouth.

Positives are he can sign and pick up signs very quickly. He doesn't sign accurately but they're consistent.

His understanding is very good (I'm not an expert but I'd hazard a guess at being advanced).
He likes adults and makes good eye contact with them.

He's also recently discovered a love of trains. I'm not sure if this is normal or not but he won't go anywhere without as many trains as he can carry, often his first word in the morning is 'oo oo' (choo choo). If there are trains available then he plays with them and hardly plays with anything else.

He's on the waiting list for SALT and has very recently been referred to the CDC.

Sorry this has been so long. I'd really appreciate any thoughts. And please feel free to ask any questions as I'm sure there are things I haven't thought of because they're just normal to us!

TIA

I've just thought of another thing!...

He doesn't tell me if he's hurt or in pain. I mean, he cries if he's hurt himself but can't/won't/doesn't point at where he's hurt. So unless I've seen what happened or it's obvious I don't know where he's hurting. He also doesn't let me know if he's in pain in any other way so it's a complete guessing game. There have been plenty of times when I've given him calpol just in case because after making sure there's nothing else wrong I'm at a complete loss.

Wow. First I have two dcs and like so many kids aged 2 found a love of trains. I have made at least 3 Thomas birthday cakes. My dc sat through his entire 2nd birthday party playing with two trains and six inches of track and ignored everything else. He has dyslexia/dyspraxia but I don't think that is relevant - his nt cousin did the same/

Next, what else is going on? and what to do about it? Well given the array of gross motor, language, and 'scrape pass' on social/emotional screen, sensory stuff, mouthing, larger head, I would say that you should ask you GP for a referral to a paed. Ideally it would be a multiple assessment like the Newcome Centre of GOSH, but those are pretty hard to get I think.

I know a lot about ASD because I started with ASD relatives and then word went round. And with ASD mouthing quite often extends longer, having sensory issues, having gross motor difficulties, not liking other children around, having difficulties with language, etc etc all fit BUT, and it is a big shiny BUT, it might well be something else that I have never heard of, because, to be honest, I have not heard of that many other things at all.

I am hoping this helps

Thanks senvet - that's really helpful.

I think the train thing is a probably a red herring and it's just a normal toddler thing. But at this point I've completely lost sight of what's normal and what isn't. DS1 loved trains as well. I don't remember him being this obsessed with them bit that's not to say that it isn't entirely normal.

He finally got a referral to a paed at the CDC a couple of weeks ago. Haven't heard anything back yet. It was the dr we saw when he had his hearing test that asked to refer him after GP and HV both refused.

I've been wondering about ASD for quite a while but I just don't know. When there are speech problems are they a part of ASD or something additional alongside it (does that make sense)?

From what I can work out the speech thing isn't a problem of itself but part of the bigger picture. But I'm not a professional so may be wrong. Hopefully, when he finally gets to see a SALT, they'll be able to give me a better idea.

Good news about the paed. Lots of people here say take notes or a diary of what dc does so that you can give good info to the paed. Some people have video or tape (eg on phone) to give examples.

With luck someone else more familiar with this stage will come on and give you some more hints.

Whatever the name or names they give to diagnoses, he is still your lovely brilliant dc, and there are loads of things now to help him enjoy life in the mainstream world

I know getting a diagnosis won't make his problems disappear. But I wish I knew what's going on with him. And especially why his speech is delayed.

I also really worry what's going to happen if his speech doesn't start improving and how he's going to make himself understood.

If he is already sorting hand signs then he is getting the whole idea of communication. There could be PECS to come and if he is vocalising then never say never.

I have a friend whose ASD-ds didn't say any words until Christmas Day when he was 4 when he suddenly said 'cranberry and mustard'. He hardly stops now.

He definitely communicates...just doesn't use words. It's fine when he's with me as I understand all his signs and 'words'. But as he spends more time away from me he needs to be able to communicate with other people.

The SALT at preschool made a load of picture cards for him but having tried I've decided not to use them at home as they're not needed. So they're going to be just for preschool. Whether they use them or not is a different matter.

Hi, I've found your thread!

Glad you have then get professions las getting involved. I know it feels like forever when your left alone but it really is great they are starting now - early intervention is key.

if your DS is signing have you thought about using signed tv programmes (my tumble, singing hands etc). It's proven that those who have the ability to speak are more likely to verbalise alongside a sign or symbol because it's helps them. You could perhaps look at the Makaton signs (CBeebies website also does some I think because of Mr tumble).

My DS also loved trains and we watched tomas the tank engine. He never watched tv at all - couldn't sit still long enough! - until he discovered TTTE! I was told the earlier ones appeal to children with ASD because the trains use language but faces stay still so they cut out that needing to understand body language etc.

He loves Mr Tumble

We use a mix of BSL, makaton and his own made up signs. If I teach him a new one he picks it up really quickly although it's always 'his version'

That's interesting what you say about TTTE. He definitely prefers the older ones and so do I

Hello there. From your post I'm picking up possible sensory processing issues, especially with the mouthing of objects, and not wanting to get messy. It may even be connected with the going up and down steps. You might find it interesting to read the book 'The out of sync child' by Carol Stock Kranowitz. It might not help you on speech.

My 6 year old was barely verbal at two years old and we did a lot of signing. He talks well enough now to let us know what he needs and other people understand him. Eventually he was diagnosed with dysarthria which fits the way that he speaks.

He sounds just like my DS2!!
As a baby he was floppy, ..bit slower than yours.. didn't sit til 1 and crawled at about 16 months..walked at 2...but badly..uncoordinated coupdn't get up steps or run or anything. Drooled like a bulldog and mouthed everything. Didn't talk..had a few sounds that were his words. He was easy going tho.. happy to watched endless Sesame Street..and we later discovered he knew his colours, numbers, and could remember EVERYTHING..he just couldn't tell us. He was not interested in other children, happy and content really...just sort of absent ! He also had a whopping big head (still has but has grown to fit it .) I KNEW something wasn't right from day one as he was my youngest of four.

Many referrals later.. physio, speech, etc he was referred to a special needs nursery with 'global developmental delay' where he picked up signing pretty well. VERY gradually speech started to come. He was 4 before he could say a 3 word sentence and very very difficult for strangers to understand until he was about 8 or 9.

Turned out he had; Hypotonia (low muscle tone) and hypermobility, Dysarthric speech, Dyspraxia, some learning disabiltiies (patchy.. he has an amazing memory and great mental arithmatic but other stuff is variable) and autism. He wasn't diagnosed with ASD until he was 9 as he was easy going, totally happy to be with everyone and it was only as his obsessions and his total lack of social understanding became more apparent that it becme clear he wasn't so much delayed as different.

But... he is now very very verbal :) Still hypotonic and dyspraxic. He's 17 and has been in special ed all the way through ( not high functioning ASD and doing 'life skills' at SN college) BUT he is still happy, loving, communicative, has now learned to take the local bus alone, has friends and a lovely busy social life, mostly within the SN community he has grown up with. He's a walking calendar which is very handy at times
He will be leaving college this summer to go on a special needs apprenticeship with a local ASD/LD charity. We don't know what the future holds after that but if you had told me at 2 that he would be doing all this, I would have laughed hysterically (and then sobbed !)

To be honest we still don't really know WHY he is as he is. But, and I say this as someone who works in special ed myself... a lot of our children do make progress that doesn't seem imaginable at 2. Get referrals, get as much support as you can and hang in there!

Hi there - I can see you are getting loads of good advice, but have you also had his eyes checked properly? The wall/steps thing made me wonder about his depth of vision - might be worth asking an optician for a check up?

Sunnyside - some things to look into their. Thank-you. I'll look at that book as well.

Medusa - thanks for such a positive story. It's interesting that you mention memory. We looked at a new book the other day where you had to find the teddy on each page. He didn't get it at all and I had to show him on every single page. Looked at it the next day and he immediately pointed to the teddy on every page. I got the distinct impression he'd memorised it. He's also very into number and letters at the mo and I've been wondering if he knows some of them. Of course, he can't speak to show me.

Grassroots - I hadn't even thought of that! That's a really good idea - thank-you. Would a normal optician be any good with a non verbal 2 year old or would I need somewhere else?

At 2 DS was having eye tests at the eye department in the hospital. Ask your GP or HV for a referral?

Thanks Js. I'll do that.

Yes defo get eyes checked!
DS2 is very long sighted and got his first pair of glasses at 6 months of age (he looked so cute!) His eyes were checked at the local hospital under a mild sedative.

A book called Late talking Children by Stephen Camarata has some good info

Thanks banana. I'll look that up as well.

Hi HHH3 my DS has ASD and SPD. He has some traits which are similar to your DS. DS has speech delay, not interested in children, he struggles with stairs - goes up the stairs on all fours sometimes, comes down a step at a time both feet on each step. I was told that the step issue is related to him being physically delayed as part of his ASD.

DS also doesn't like getting messy but this is selective, he'll use paint but hates ketch up on fingers. He also leans on things, that's part of his SPD needing pressure. I think mouthing is sensory too.

Thanks life. How old is your DS?

He's 3. Diagnosed in the autumn.

They do sound very similar. How's he doing? And what's he like with adults?

He is doing better compared to when he was first diagnosed. His speech has improved and he asks me for things eg biscuit, bread, tv. He has echolalia so repeats a lot of what he's heard from us, TV and from books. To an outsider it gives the impression that he's talking but it's not spontaneous speech.

He is better with adults but only if they have something he is interested in eg toys or books

Hi, he sounds similar to my DS at that age and he has autism. Speech and language delay is very often co-morbid with autism. I honestly think it is best to get him assessed and if he is diagnosed I would consider pushing for an Education Health and Care Plan. I found its so much easier if you have this before they start nursery / school because once in school it can be harder to get the support