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HELP conference for parents of kids with new ASD DX

(13 Posts)
bunnyrabbit Wed 24-Jun-09 12:10:09

Going on a HELP conference tomorrow for parents with children with an ASD dx in the past 18 months. Wondered if anyone else had been on one and any tips as to what to expect?

Cheers,

BR

magso Wed 24-Jun-09 12:29:24

I went straight to the help2 ( not usually allowed but ds has mod autism but was not diagnosed till age 7 for complex reasons so we skipped some steps!)so cannot tell you exactly. We all turned up, mingled with coffee before the start, sat down and listened to talks intersperced with interactive group work and other gentle ways to include parents. Of course we are all experts in our childrens quirks and needs - its a good way to exchange ideas - much as we do on MN.
I found it quite helpful to be among others struggling with similar issues - sort of comrades in arms feeling iykwim!
If it is local there may be local information - such as local group information or contacts to make. Hope it goes well!

JonathonRipplesnipples Wed 24-Jun-09 13:52:26

I went quite recently

We sat and had a coffee and then tbh they kind of went through the 'help parent manual' chapter by chapter. Not much discussion...more of a chalk and talk exercise. It was only a one day thing so no time
I think it is probably quite useful for people quite new to the world of autism (particuarly if its quite raw still)...and also if your child is little. (mine is big so less useful) It is quite basic stuff (you will find more upto date info probably on this this board tbh ).
But
Nice to have rl convos (when there were breaks) with people who really understood. Nice to have a rl giggle too .
so yes...good
smile

JonathonRipplesnipples Wed 24-Jun-09 13:52:56

The legal info was useful
And dla stuff

JonathonRipplesnipples Wed 24-Jun-09 13:54:42

Oh and they had a resource table which was good (timers,seat wedges,weighted blankets,seamless socks etc)

Actually it was good

grin

bunnyrabbit Wed 24-Jun-09 14:33:55

Oh Cool. Thank you. DS1 is 5 and is very high level probably aspergery so can be quite difficult to know how to deal with 'episodes'. Will be nice to talk to other parents, although I am a bit worried of seeming a bit of a fraud as DS1 is so low maintenance.

DLA stuff would be good as I keep meaning to fill the forms out.

Tah

BR

bunnyrabbit Mon 29-Jun-09 13:40:59

Trouty was asking how it went so:

It was very good. On the one hand it was nice to hear about other people's children and that some of DS1's traits appear to be universal (stone collecting anyone), and on the other hand, (I know it sounds awful but) it is good to be reminded of the things he is good at.

And because I think it finally made us come to terms with the diagnosis. Wether or not I agree that he has trouble with all of the Triad of impairments there is no doubting that he is not exactly NT.

We also disccovered something new about him from a purely off-hand comment regarding hypo/hypersenitivity and how a child might break an arm and you wouldn't know for 2 days. DS1 broke his and we didn't know 2 weeks shock blush. Never even thought this could be somthing to do with ASD

There was reams of info on help lines and support groups and a great section on education and what the school are legally obliged to do, and what they are not allowed to do: descriminate on ground of disability (i.e "We can't take DS on school trip as he might run away" - tough. Get more staff then!!).

Some really useful coping techniques (6 second rule and looking at another part of the fase if they can't make eye contact) and comprehensive info on what you can claim for from DLA and Social services.

Also lots of info on helpful products, OT aids and timers etc....

All in all well worth taking a days hols for and I got to spend time with DH (we had a slap up breakfast before hand).

grin

BR

magso Mon 29-Jun-09 14:24:49

Hi BR! Glad it went well! Perhaps I should have gone to a Help session first afterall!

Ds had a really painful tummy condition which was missed by A+E. ( We knew he was in pain or ill - he could not walk - just not which bit was poorly!) Gp ( who knows ds stout constitution) sussed it - but that had to wait till monday morning!

bunnyrabbit Mon 29-Jun-09 14:48:06

Poor littlemagso. I assume all is ok now?

It is difficult though. My DS1 is not your literal type of ASD boy. He can quite happily fabricate to his hearts content if it's convenient, so if he whinges there's something wrong I generally ignore it, if he just happens to mention that he wacked himself or has a headach, then I get a bit concerned. And it really was two weeks and he said it was fine. Didn't like the fact there was still a bump on his arm so insisted he went to Drs. Ended up in a cast blush.

If you can still get on a seminar I think it was well worth it.

BR

magso Mon 29-Jun-09 18:33:41

(ds is fine now thanks! Ds can make things up too but its very hammy acting!)

bunnyrabbit Tue 30-Jun-09 09:49:52

LOL it can be so obvious can't it. So over dramatic and hammy. Although they'll get better at it as they get older no doubt.

What subject did your Help2 concentrate on, if you don't mind me asking?

BR

magso Tue 30-Jun-09 10:36:48

I went to a few. ( Ds was 8-9 and already in sn/asd school before we got access to the couses)
The managing anger one was very useful although aimed at HF/As (ds is not) it had many stratagies. The 6 second rule was mentioned - it would have been so useful to have been able to quote it when ds started school. A passport ( I think that was the name) was discussed with helpful instructions to staff such what the child likes and what hates, what helps them stay calm, what to do or not do if the child starts to get close to melt down.
I went to the sensory help2 and that was excellent. I suspect many of ds differences are sensory but this seminar gave me the courage of my convictions - it was a conversion moment!. All the things fitted into place! I asked the paediatriciasn to refer for OT/sensory assesment ( he listened and did!) and he now has a sensory diet.
The NAS is organising a new toilet difficulties help 2 and I am awaiting that but suspect we have just about got there now.

All would have been so much more useful if I could have gone when ds was 5 or 6. I would certainly recommend especially for parents of children in ms. I could with a managing challenging behaviour seminar aimed at the less able child!

bunnyrabbit Tue 30-Jun-09 11:47:53

Wow sounds like they've been really useful for you.

DS1 is AS so might have a look on NAS as the anger management sounds like something we could really do with.

Not sure about the sensory seminar for us. DS is hypersensitive to sound and taste and both hypo and hypersensitive to touch, but all are manageable and his reaction and coping is not too extreme.

Have a meeting with SENco (MS School) tonight so interested to see if they'll use the 6 second rule with him at school.

Watch this space!!

BR

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