Is he? Isn't he? - Back on the rollercoaster with ds2.

[coppertop]

I mentioned on the "Quiet baby" thread a while ago that I've been having some concerns about ds2 being on the spectrum. Our portage worker has spoken to the Paed about him (she sees ds2 every 2 weeks or so when she visits ds1) and has put him on the waiting-list for a referral. In the meantime we're back on the "Is he/isn't he?" rollercoaster. One day he seems fine and I think I'm worrying over nothing. The next day I'm 99% certain that he's on the spectrum.

Ds2 is now 17 months and still doesn't talk. He had a few words at about 10 months but these have disappeared. He does babble though, which is more than ds1 did at the same age.

I've had another look at the CHAT test and I'm fairly sure that he would fail. His pointing is almost non-existent. If I am holding an object in my hand and say "Where's the X?" he will point to it. If I put the same object down and say "Where's the X?" he just looks at me as though I'm speaking in Martian. He doesn't seem to be able to follow a point and has never pointed at something as though to say "Look at that!" There's a certain element of shared interest as he will bring toys/objects to me, but he tends to throw them on my lap and toddles off again.

His 'thing' is round objects, circles, and anything that spins - and yes that includes the washing machine. Watching the fan spin round is another favourite past-time, as is turning his cars, walkers etc upside down so that he can spin the wheels. He likes his toys but doesn't really play with them. He prefers to carry them around with him.

He is extremely active and rarely stops. He is almost fanatical about climbing and has an amazing ability to balance on the most unlikely surfaces - which has knocked several years off my life on more than one occasion!

He has hypersensitive hearing and likes to look at things from odd angles. His favourite activity is to spin round and round while looking out of the corners of his eyes. Thankfully he doesn't have sensory issues with his hands like ds1 does so his fine-motor skills are pretty good.

I wouldn't mind so much if he IS on the spectrum ( although obviously I would prefer him not to be) but I just wish I knew one way or the other. Back to waiting for that appointment I suppose....

Really sorry to hear that coppertop

Hugs

So sorry to hear this Coppertop, hope you're doing OK.

Update time again for anyone who is interested.

The CDC phoned this afternoon to say that there are two appointment slots next week that need to be filled so we've been offered one of them. I just need to phone tomorrow to confirm that we want it but ds2 will be seeing the Paed on Tuesday afternoon. I doubt we'd get a dx before a full assessment but at least the Paed would be able to tell me if she thought I was just being over-anxious.

Yesterday was ds1's turn to go back to the CDC for a follow-up appointment with the Paed. Things seem to be going really well for him atm. He's made a lot of progress since his assessment almost a year ago. Ds2 came along too. He spent most of the appointment completely oblivious to us and made a beeline for the Thomas the Tank Engine toy. Why did that not surprise me?

Glad you have an appointment, at least you kind of feel in the system and taken care of, IYKWIM.

Hope everything goes well. Pleased to hear ds1 has made good progress

Good luck with the appointment, coppertop.

good luck coppertop!

Good luck Coppertop, let us know how you get on.

ghood luck coppertop

Ds2 saw the Paed this afternoon. It was one we hadn't seen before so I was a bit nervous but it went well - or as well as these things can be. Ds2 spent most of the appointment crawling under the chairs and flicking a socket switch on and off. The Paed was pleased with the amount of eye contact though and ds2 smiled at him quite a bit.

Ds2 has been referred for a full assessment but the Paed is fairly sure that he's somewhere on the spectrum. In some ways it's a huge relief as it means I'm not just being paranoid and at least we know what we're dealing with. At the same time I feel quite down about it and I'm not looking forward to going through the assessments, IEP's, appointments, DLA etc all over again. For now though I'm concentrating on the fact that at least we've been through it before and have a rough idea of what to expect.

coppertop, I dont know what to say I just hope it is all as painless as possible and at the end of the day he is still ds2 whatever. Really rubbish arent I? Just remember and know how hard it is and you must feel quite battered by it all. He has good things though with the smiling and eye contact {{{{{{{}}}}} a hug from me

Oh bum, I am sorry CT. It's so good that your ds1 is coming on so well though, that must be a good sign. Must still be hard to deal with though

Hello Coppertop.

I am sorry that the news has made you feel sad.
We are going through the same thing again with ds4, although in his case it seems to be more complex language problems.
I think the good thing about going through it all before is that you know how the system works and when to push for more support.
I hope everything is as stress free as it possibly can be

hi CT hope you are feeling less sad ,thinking of you we just heard yesterday that the school is worried about ds3 similar probs as ds2 although nowhere near as bad,not such a shock as first time around...its such a rollercoaster isnt it.keep your chin up girlxxxxxxxxxx

Thanks everyone. I'm feeling a little better this morning. It's hard not to when ds2 is grinning up at me in his 'uniform' of a nappy and a red woolly hat.

I feel better knowing what happens next in the process and knowing what techniques can work with certain behaviours etc. I can see how well ds1 is doing at school. Instead of just coping or managing he is really enjoying it and learning so much. I also got the shock of my life when his teacher showed me some handpainting that ds1 had done. This is the little boy who 6 months ago wouldn't even use his hands to break his fall.

In many ways ds2 is less affected by his ASD than ds1. He avoids other children if he can but at least realises that they are there. He also has a few words now whereas ds1 at a similar age didn't even babble. He's a bright little boy who learns fairly quickly so I'm fairly optimistic about the future.

It's a b*gger having to go through all the forms, meetings and appointments again though. Ds1 had his final appointment with the Community SALT in September and I was so pleased that I wouldn't have to trudge over there anymore. We don't have to re-apply for DLA until he's 7 (although we'll probably still apply for the mobility component when he turns 5 next summer). Now we get to go through it all over again.......

I'm just feeling sorry for myself really instead of concentrating on the fact that we're extremely lucky to be getting a dx so early.

You are entitled to feel sorry for yourself! Just don't start shouting at people like I have today! (in Homebase because somebody had left their daughter asleep in their car for 40 minutes among other things) . They sound like absolutely gorgeous boys, Coppertop. Keeps us posted...

You really do have every right to feel sorry for yourself. It sounds like you have to cope with a lot on a daily basis and this was always going to be a shock however much you expected it IYKWIM.

I like the thought of Ds2 in red woolly hat and nappy though - he sounds lovely! Good luck with all the appointments etc - I hope they don't wear you down too much.

ct - I have nothing more to add but just wanted you to know that I am thinking about you.xxx

Coppertop - just to echo what everyone else is saying really and that you DO have every right to feel sorry for yourself too. Thinking of you.

(((((((((((hugs))))))))))))) x

Glad you are feeling happier. I can just about imagine how upset you've felt - just being told that ds was behind on his motor skills and has a few issues with motor planning etc was enough to make me feel very low indeed for a short while. I totally admire your optimism and strength. And your sons sound absolutely lovely.
Saker, did you finally get my email???

copertop just read my post and realised how insensitive i may have come acrossmy ds3 was not a shock to me he is 6and suspected he was on spectrum for some time..please dont think badly of meladies.i was refering to my situation and not yours sorry

You weren't being insensitive at all, ladyhawk. Ds2 has had a few autistic traits since he was a baby (hypersensitive hearing, obsessions with circles and spinning and the colour red etc). It was only that for a few months the NT stuff seemed to outweigh the ASD traits, eg he has pretty good eye contact when he wants to and can be quite sociable. I think we've probably known that he has ASD for about a year or so now. The big giveaway for us was when he developed 4 perfect words overnight (the pronunciation was too perfect) but lost them soon after and didn't gain any others.

With ds1 we'd known for about 2yrs or so before we got the official dx and it still seemed to come as a shock IYKWIM. Knowing yourself is one thing but it makes it more real when someone else tells you that you're right.

You haven't been insensitive at all.