Please tell me how you cope each day without totally cracking up.

[othermother]

How the flippin' heck do you get through the day looking after a child with ASD who's behaviour is very challenging? I'm seriously stressed almost all the time, get angry a lot, cry a lot, and hate myself for not being able to cope. I love my son more than life itself but a lot of the time I just wish that someone would take him away from me and give me a break.

I'm having CBT atm (only started it last week) to try to change negative feelings into positives, but I'm really struggling.

Do any of you lovely people have any tips on how to get through the day without getting angry/sad/stressed/totally fed up with life?

TIA x

awww I'm sorry you are feeling so down with it all, and I'm just not the right person to advise since S is so mellow most of the time. The into the wee hours stuff is draining; I wonder if getting things right for him supportwise at school will have knock on effects in reducing anxiety and helping with sleep? otherwise - you need more breaks. I don't know whether you would look at going down the SS/respite route (and how things are in your area if you did decided to do that)....

Go out into the woods and mutter/scream/stomp about like a mad witch.

Its a good job I've no neighbours, and my dd is not even asd, just sn, but still it drives me nuts.

Stick to your CBT, it sounds less likely you'll get sectioned yourself

I really don't know what the answer is. Some if us probably DO go mad. Maybe a sensible person will come and answer you.

Actually, you need to ring up SS and tell them all this, and demand some help and respite.

Cheers TC

The melatonin seems to be rather hit and miss at the moment, so that's getting me down. He's down right now having a total meltdown and I am trying my best to ignore him telling me and Rik how evil we are etc...

Schoolwise, they asked for written confirmation from the paed so they could set up some help for him, but the paed said he's not prepared at this stage to say it definitely is HFA/AS as he's still undergoing the whole drawn out diagnosis process. Speaking to other mums from the school who have kids with SN they reckon the school is useless where support is concerned. Ho hum.

My son (M) noticed a massive change in Tom when he saw him the other day (M lives away now and only visits when he can get time off work), all the licking and ticcing etc, the having to stroke away the pain when someone brushes past him or if he brushes against something( about a zillion times a day!!), and his temper! He has become quite violent and it's so difficult to know how best to handle it. I just wish there was more support and advice around, cos I'm always scared I'm doing the wrong thing, never really know what I should be doing....

Here's some things worked for me:

Never lose your temper - admittedly easier said than done. When it really gets to you just walk away - the bottom of the garden was a good place for me at times.

Explain, exlain, explain - everything and always give a reason for actions. I always used a quiet voice and words that were unambiguous and could be clearly understood.

Rigid timetable - I drew up a timetable, explained it and put it on the fridge door. Anxiety about 'unknowns' can lead to meltdowns so the more you can explain / prepare the better.

Very little change in routine and no unexpected surprises. If we were going out for the day I would remind him every day for days beforehand.

Avoid busy, noisy places i.e.supermarkets, shopping centres etc. Too much stimulation just overwhelmed him. If we went out for a meal it was on quiet evenings at quiet times. Same with using buses - quiet times after the rush hour.

I'm not claiming to have the answers but these things worked forme.

Before his dx when i didn't realise what was causing his bizarre behaviour I use to scream, shout and get totally exasperated. When i learnt it was ASD I modified my own behaviour radically and it seemed to work.

Best wishes

More posts!! Thank you.

I just said to my dh earlier that I wish sometimes that the neighbours would report me to SS just so I could have a break if they take him away! I'm horrid aren't I?

I wonder if SS would help? I suppose it's worth a try!

Thanks wetaugust, Some days I do manage to not lose my temper too much, but other days I find it impossible not to. I think it doesn't really help at all that I have bipolar, so my own moods are somewhat erratic... also, I'm not the best at routine sadly. It's so crap that me of all people with a stupid mood disorder has been blessed with a child that needs someone stable to bring them up.

The routine thing makes absolute sense, I really do need to try harder.

when it comes to the nitty gritty of behaviour, I think you'll probably learn more from the wise ladies on here and the books they recommend than the average bod you see for 1/2 every 3 months. might be worth seeing if there's any difference without the fishoils - am pretty sure there was a poster on here a while back whose kid didn't seem to react well to them. do you have any letters mentioning the autism from previous paed appointments? bit at school for making support dependent on a written diagnosis though - OK the boxes will be easier for them to tick with a diagnosis, but they should be looking at his needs, would the paed be prepared to write to school about what T needs in general???

there's some basic guidance about behaviour on the NAS website:-

www.nas.org.uk/nas/jsp/polopoly.jsp?d=2427&a=8385

No mention of AS or anything on any of the previous letters...just things like communication disorder, odd behaviours (his licking and grimacing anmd tapping etc), delayed echolalia, fine motor skills being behind his verbal skills, obsessive behaviour, lack of social skills with his peers etc...

Might be worth stopping the fish oils, but I don't know yet. I wanted to give them a chance you know? Hmmm...

I think the main thing is really that he's not getting enough exercise. It's too wet for him to go on his trampoline (which he loves) and so he has far too much energy that needs using up somehow.

I shall pray for the rain to stop.

Thanks for the link btw x

We've been really lucky with our SS - our son quite mellow too but offered us 4 hours a week direct payments so we can have a break and spend time with our other children. Look at the Contact a Family website for info on assessments - you can get an assessment for you as a carer as well as for your child's needs. Have you applied for DLA? We got ours without a diagnosis we just got a letter from the Paed to say he was assessing - your school might also be prepared to write something. Again you could perhaps use the money to get some help. Are you in touch with your local NAS branch - you don't need a diagnosis to go along - parents will tell you about services avail locally. Sometimes there are leisure groups etc for children with AS or specialist sitter services. Also look into trampoline lessons / club etc?? Our local sports centre run some and has worked really well for friend who has son with AS and first activity he and his sibling have been able to do together. Again sometimes local AS groups runs trampoline clubs etc If you have a local Carers Resource get in touch with them and they will be able to tell you whats available and how to access it / complete the forms etc. I would also be looking at other schools as a back up - if you know whats available locally - may be some indep schools for AS etc - you can then try and direct the professionals towards your choice as you go through the process. You might have to accept that there are better places where they are more AS friendly / smaller classes etc. Look at IPSEA for info on special ed needs. Its worth knowing your rights and whats available before you start the process because if there's a better option out there its unlikely anyone is going to tell you about it.

Actually your school don't need a diagnosis to put in support - they just need to identify a need eg social skills, behaviour etc and they should put in the first 20 hours 1:1 out of their own special needs budget (the government delegate money to schools so they have a pot of money they can use). They can contact an Ed Psych themselves and may be able to access speech therapy direct as well - our school refer several children a year to speech therapy in reception - often the speech therapists run social skills groups etc at school. So you should go back to the school and ask them to put in more support now. eg are they using visual timetables at school? Warning your son if things are going to change etc?

For the sensory stuff look at posts on BIBIC. We are going in Dec but they seem to look into sensory side of things and come up with ideas and only £50 to go for initial assessment (+accommodation) at moment.

Sorry that all sounds like more work not less work for you not less!

Thanks for your reply. I've just been on the BIBIC site and am waiting for an email back from them.
I've found a support group locally, and it's actually pretty good, but the problem I have with that is that I seem to be working most Thursdays which is when the group runs. However, I do have some numbers of other local organisations to look into, which I shall do today.

Re school, the paed did suggest to the school that that they contact an ed psych. I think I need to arrange another appt with the senco.

I feel as though I'm wading through treacle at the mo, and not being very pro active. I think I shall dedicate the rest of the day to finding as much help/support as I can (along with finishing redecorating dd2's bedroom and hunting for a birthday present for my sister for tomorrow).

Right...thanks again everyone. Off to try to get things rolling!

How do I cope? One word: Respite