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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

I've SO had enough now

20 replies

amber32002 · 27/03/2009 10:11

Hell, just back from hospital and now they've found dh has heart irregularities. So it's even more tests, and even more people to try to explain ASD to. He got so confused and stressed out in the ECG testing this morning, bless him - then he doesn't understand the questions and gives totally the wrong answers. I'm tired and I want all this horribleness to stop, I really do. It's just neverending...

OP posts:

Widemouthfrog · 27/03/2009 10:17

Oh Amber, you and DH are coping with so much . If only there was more we could do to help, as you have helped us with our kids so often. Do you have anyone supporting and advocating for you and DH in RL?

sc13 · 27/03/2009 10:26

Sorry to hear that Amber

TotalChaos · 27/03/2009 10:33

sorry to hear this Amber, I realise that being prodded and poked and in the harsh hospital environment must be a sensory nightmare for the both of you.

improvingslowly · 27/03/2009 10:41

sorry to hear that. and doesn't it seem odd that so many medical people have no understnading of asd...

alfiemama · 27/03/2009 10:42

Oh no Amber, Im so sorry, I had taken a little break from MN for a while and thought all was ok for you. I am sorry you are still going through this nightmare.
Thinking of you and your family. x

cory · 27/03/2009 10:44

Oh poor thing, poor both of you. I am so sorry to hear this. ECG must be a dreadful experience for a child with ASD; and it must be very difficult for you too.

Hopefully the heart irregularities won't mean anything though; my Mum had them (discovered when she started school) and she's been fine all her life.

busybeingmum · 27/03/2009 11:24

This reply has been deleted

Message withdrawn

cory · 27/03/2009 11:29

Really sorry, I misread dh as ds. Still, it must be just as difficult for an adult with ASD. Hospitals are not relaxing environments at the best of times. I hope things get sorted soon.

Original poster

amber32002 · 27/03/2009 11:34

My usual advocate isn't working at the moment - her own son is ill, so nope, there's not a lot of help available at the moment. Because we're shunted from department to department and person to person so fast, there's no way to re-explain ASD to everyone anyway. We just have to cope with it somehow. Thanks for messages and virtual tea. It helps.

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BriocheDoree · 27/03/2009 12:39

Amber, so sorry to hear about DH. Virtual cup of tea and enormous slice of chocolate cake your way. Funny how ASD is so common now but nobody understands about it!

Barmymummy · 27/03/2009 13:22

Oh Amber I too am so sorry to hear this. You have helped explain things to me to understand my DS that have helped me enormously. I wish I could help you like you have helped me. Sending you huge slices of choc cake, always helps me in my darkest hours

sc13 · 27/03/2009 13:27

How does one become an advocate? I mean, is it something that one can be trained to do, and then volunteer to do?

Original poster

amber32002 · 27/03/2009 13:36

SC13, the local autism charities occasionally have volunteers who help with advocacy/support, but there's very few that know how to help HFA/Asperger syndrome adults. They specialise in LDs and children, mostly. The lady who works with me has had to learn everything about what I need from me, because there's no specific training available. There's such an opportunity for a decent service if people wanted to do it, yes. 400,000 people with an ASD who are in society somehow and trying to cope and failing, all of whom need some help.

Thank goodness I did voluntary work in a hospital in the past so know about hospitals and am not completely panic-stricken in there. It's just hard trying to interpret back and forth betweeen dh and the doc and cope with everything in the room at the same time.

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flyingmum · 27/03/2009 16:20

Amber is it worth picking out say 10 most important things that people in hospital that are interracting with your hubby need to know about his ASD (ie, beeping noises will be stressful for him) and bullet pointing them on a card which you can then laminate and just hand to the person who is about to interract with hubby so they can read it. It would be quick for them and save you having to repeat it all over and over to different people. Also, if say you needed to leave him on his own he might find just handing over a card to someone a lot easier than having to explain.

You are really good at sorting and writing and analogy - the plug socket thing you wrote about was brilliant and is helping us all in our school so much.

flyingmum · 27/03/2009 16:22

Sorry Amber, Got distracted as DS1 was chuntering at me so pressed post. He's lurking behined me in a wolfish way expecting me to feed him but I'm not going to until it's tea time.

Just wanted to send you every best wish to you both and virtual wine or whatever you like (car magazines? Science stuff? ) to help you through this horrible time. Wish I could do more.

Back to the wolf . . .

Original poster

amber32002 · 27/03/2009 16:32

Flyingmum, we've got something similar, but it's amazing how little use it really is in 'real life', because people can read it, and then completely ignore everything on it/not understand it/not realise what it does or doesn't apply to, I think.

It's the little things, like them suddenly calling him in for the consultation a few minutes early when he's reading a book and has to put his reading glasses away. He can't figure out what to do first - so ends up panicking about what goes where and dropping things etc. Then even if they've been nice about it all, he's still stressed out and can't think straight.

They'd need to have all the info well in advance and plan what needs doing, really. But if the doc finds he needs test X done right now, then of course the people doing test X have no clue he's about to arrive, and it's a whole different set of unprepared events that everyone has to muddle their way through.

ASDs are bloomin' difficult to understand even if you have months and years of experience, as so many of you already know.

Flyingmum, ah yes, car magazines and science stuff always very well received! I think we might try a glass of wine later...

OP posts:

Shells · 27/03/2009 16:33

Sending you thoughts Amber. You must be exhausted. Take care.

TClanger · 27/03/2009 16:46

This reply has been deleted

Message withdrawn at poster's request.

HelensMelons · 27/03/2009 22:36

Amber

Sorry to read that you have more medical investigations to worry about. I hope you enjoy the glass of wine, or tea or chocolate cake and are able to relax a little bit.

5inthebed · 27/03/2009 22:39

Oh Amber, so sorry you are both having such a bad time at the moment.
Sending positive thoughts xx

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