Monday morning

[bullet123]

Is the day that Ds2 goes to see the paediatrician (incidentally Ds1's paediatrician) so we can discuss numerous concerns that we, the area SENCO and the playgroup he attends have about him. Basically he is still not speaking, beyond a handful of very poorly pronounced words, the majority of other sounds being either babbling, humming, screeching or shouting vowel sounds. Besides that he is very self contained, though not as much with me and he will take an adult's hand to get them to help him with things. There's a few other issues as well, but of course at 3 years old it's difficult to separate from typical age behaviour. He has good understanding and is perrfectly capable of getting his meaning across without words (we have been encouraging and pressing for words of course, but he rarely imitates or remembers the soudns).
He had a parents' evening yeaterday in which (when asked directly) they said they thought there was something other than a speech delay going on, but they did not know what and of course can't suggest anyway. So the plan is to get outside help to find out, whether it turns out to be just delayed speech and shyness, or somethign else. These are a couple of entries from his playgroup book:

"Thursday 5th Feb AM" (2.5 hour session):
J came outside with us to make a snowman ( nb, knowing Ds2 he would have possibly watched, but not joined in with the building ). He cried when we went inside for toast and chocolate ,which he enjoyed. For the rest of the morning J was only interested in the trains. Adults moved the trains to different activities to encourage involvement. J kept trying to take track and trains away from the group to play on his own."
"Wednesday 287th Jan AM"
J wants to pick the biscuit up out of the bowl but doesn't seem able to. He keeps getting my hand. I help him to pick up the biscuit by placing his hand on it or picking it up together. When the biscuit is in his hand he seems unable to move it to his mouth. J is holding the biscuit on my knee and moving it from mouth to biscuit".

you know my thoughts already - so all I can say is - good luck for monday -the run up to the appointments are nervewracking - and the most important thing is you get a right answer/path to go down on Monday.

Re:playgroup - my DS sounds very similar to yours at that age - but with worse receptive language - he felt much happier in a school nursery than in this sort of less formal setting.

Have you assessed his receptive language without cues. So hands by your side not looking at what it is you want and not at a set time asking him to fetch something. Or toys out in front of you and 'make the teddy jump'. I'm still frequently stunned by how little ds1 understands when I remove cues and strip it down to bare language.

So for example ds1 will often respond entirely appropriately to 'go and get you shoes they're in your bedroom and bring me a towel from the bathroom' but sat in front of a desk with some toys in front of him cannot 'make the dog jump' 'turn over the bus' or 'hug the teddy' (can give me anything though). He's big on nouns and has enough life knowledge to make sense of the first sentence, but not enough understanding of language to do the other tasks.

Good luck!

bullet's DS1 has ASD and receptive language difficulties, so she'll be quite switched on to that sort of issue (I have met her quite a few times and know her well from another site)

It can still be a surprise though. I thought ds1's receptive language had come on a lot as he appears to understand so much now (he's 9 severely autistic and non-verbal) I was stunned recently to discover that actually he really still only understands nouns. Absolutely stunned and I've been working with him myself very part time, but still very involved every day for the last 3 years.

Most important thing to work on is imitation. once that comes other things follow. It's hard to teach anything without imitation as you generally have to do it all hand over hand.

What's his motor imitation like? So if you said 'do this' then clapped/put hands on head or put a toy in a box would he copy you? That helps suss out whether its an imitation problem or a problem reproducing speech sounds.

Good luck for Monday, We have our first appointment then, so I will be sending poitive vibes for us both.

good luck to both of you. Take a list of questions!

At least you only have to wait til Monday - I agree that working on his understanding is a good idea. Test it as much as you can to find out what he responds to the best. How does he get his meaning across mainly ?

Ds2 tends to often not respond when you talk to him, but there are things I say that he has shown good understanding of, as far as we know. Examples with no gestures given to help:
Me: "J, do you want to pout Snuggle bear in the bus?". Ds2 does so.
Me: "J, do you want a yoghurt?". Ds2 races over to fridge or sits at a table.
Me: "J, where do the keys go in the door?" J either looks at the lock or puts his hand on it, or grabs the keys and tries to put them in the lock.
Me: "J, take off your coat." He does so.
Last year (late November or early December) I was also telling him about Father Christmas in the sleigh and he picked up his bear and put it in a toy frying pan and pretended to fly it. This sort of action is rare for him, but it does suggest he is taking things in. I know at that age I had perfect understanding but often couldn't show I understood or respond. I still get it a lot now, eg not waving on time, not lookign at something someone points out, not throwing a ball, not answering someone in time etc.
His motor imitation is very poor, he is now trying to do the actions for wind the bobbin up,, but even then he won't copy directly, it's something he does on his own. I have been trying for ages now to get him to copy movements. We have a very simple game that he loves which is hand clapping and then raise arms and shout his name, but he will either make my hands clap or do nothing. You're right about the hand over hand thing, I often have to move his hands to try and show him the actiosn to something. Eg he still won't point to body parts even though "head, shoulders knees and toes" is a favoured song.

Best of luck for Monday. Take his playgroup diary with you and as many questions you can think of written down.

Ds2 has been seen. He took no notice of the paediatrician but kept dragging me by the hand to show me things or get me to help him with things. She asked loads of questions and weighed and measured him. He is on the 2nd to 9th centile for height, on the 25th centile for his head and the 25th centile for his weight. She is going to refer him on for a full assessment (exactly what Ds1 had) which this time will include what's known as a 3di test, which is a detailed questionnaire to look at the autistic spectrum.
Also, I spoke to her about the fragile x thing and she agreed it needed looking into, got some forms/pockets for me, sent me off to the pathology lab, they agreed to take the blood there and then (well, bar a 10 minute wait). So my blood is now being carted off to Birmingham to be checked, but it will probably be a good while before we hear anything. I told her I wanted myself rather than Ds1 orDs2to be tested as if I didn't have it there's no way they will have.
Ds2'sassessment should be done in July, so not long to wait now.

well done for managing to talk about the fragile x issue. how do you feel about it all?

Not good. Thought she'd just say he needed some SALT. Although I do think she probably just agreed to the blood tests to stop me fretting. Still, the assessment will let us know one way or another.

Glad you got on well Bullet.

oh , I imagined that you might be rather upset at the thought of him needing an assessment. painful as it is, far better to be assessed if it turns out to be unnecessary than to miss out on any help. Is he likely to be getting SALT any time soon?

I know and I've got Ds1 who is happy and gorgeous to see it's not terrible and I've got myself to see that it's not terrible. And of course Ds1 may not be on the spectrum. The paediatrician is going to see if the SALT can see him earlier, but no guarantees. And of course they are taking precautions with Ds2 and being proactive because of the family history of the spectrum.

Sorry, Ds2 may not be on the spectrum, not Ds1.

frustrating having to wait for all this once the procedures etc have started and you've psyched yourself up to looking for outside help.

Just seen this. It sounds like you've got a good paediatrician but I'm sorry if the news was a bit hard to hear. I hope your DS2 gets all the support he needs.

Shameless bump as I have to do a 3di questionaire on his behalf next Wednesday. He is pretty much the same as described in my first post on this thread (well, it has only been about two months), with the exception that he will take an adult's hand to go to something and then want the adult to watch him.

no knowledge or experience of 3di, so can't be of help on that school (I imagine that you will have googled a lot about it anyway though.....) so can't really offer more than virtually tea/sympathy etc, the run up to appointments is shitty, the is he/isn't he, the it all starting to seem so real once the appointment date approaches.

have you heard anything at all re:fragile results?

Good luck on Wed. We have first app tomorrow and can't help being really nervous, but have to stay calm because everybody else is in a panic. Good luck bullet!!

I've never heard of 3di either - though I did fill out a very detailed questionnaire for DS1 at the hospital in the early stages but I don't remember what it was called.

What size in cm is the 25 th percentile? DS1 has a small head but no idea where it is in the centiles.

What does he want the adult to watch? Him playing or doing something?

DS2 Had the 3di, i'm off out now but will try to get back to you later!

TotalChaos, I did post about it elsewhere. Results negative, which was to be expected, so everything just a coincidence and it means that Ds2 doesn't have to go through the blood tests should they find there's summat going on.
There's some basic info about the 3DI test but pretty much all I could find out I was told when they phoned me up. It takes about an hour and it's a detailed set of questions that should take about an hour. Then it says whether they think the child is on the spectrum, or whether it's something else, or whether it's "just" a delay. I was told they do give you the choice to go into details with the answers, so I can say "no, he doesn't do x, but that's possibly because ..." or "yes, he does do y, but that's maybe because..." But of course it's not a diagnosis, as they need to see Ds2 to make that judgement.
I'm afraid I have no idea of actual cms, though I'm sure if I asked the paediatrician would have made a note of it.
He usually likes the adult to either watch him on a trampoline, or running up a ramp, or hiding under a blanket, or flying his toy helicopter around, or watching him put a toy astronaut into a space buggy.
gGood luck for tomorrow SC13.