Where can I take my ds?

[macwoozy]

My ds(8 yrs -HFA) doesn't want to go anywhere anymore. No play parks, theme parks, woods etc. He just wants to sit in front of the computer and would do every hour if we let him. It came as a shock to me on his birthday, I tried to sell him the idea of all these wonderful theme parks, but still he just wanted to sit in front of the computer. His school have been implementing a reward system whereby if he behaves he has a reward at school as well as home, and yet when I mention a 'reward' such as swimming, he flies off the handle and says he just wants to stay at home.

This is seriously effecting the way we live our lives now, we know we can't go anywhere without a fight, it takes an absolute age before he can get his head around going anywhere remotely familiar. TBH I'm getting pissed off with it. I would love to go to Madame Tussauds but I know this will end up in tears. I also know that even though he can walk he would be so much more relaxed if he was in a pushchair of some sort, do any hire out for the day?? Even though he's 8 he wouldn't even give it a second thought that I asked him to go in a pushchair at his age. I'm just craving the stuff that I used to do, just something as simple as a craft fair.

What do you do as a family day out, where do you go?

My son, Stuart went through this last year when he was 8 and it still causes some problems. He had to be rewarded with computer time if he came out with us to the park or swimming.

What does he like?, is there anything in the games he plays that could translate to a day out (football for example).

Stuart goes to cubs but moans every week, the pscyologist said to encourage him to go and let him go on the x box when he got home and never punish him by grounding him or he could manipulate this and get himself grounded.

The last family day out was to a medieval weekend and he loved all the weapons etc

Stuart also likes the cinema and soft play and the swimming pool (but only the lesuire pool with the chutes)

Has he got friends, I know this has been our biggest problem but he is starting to play with others in their gardens and he sometimes takes a friend to the cinema or the pool.

Get some leaflets for places you would like to go and leave them in his room , dont talk about them but if he notices them just say that they were places that you thought sounded interesting. If he makes the desicion that he wants to go somewhere it will make a huge difference to his behaviour (hopfully)

Try places close by and build up to places furthur away and try and find out if something is bothering him in certain places (noise, lights, smells, crowds) we find that Stuart cannot cope with enclosed shopping centres so we just avoid them at the moment and break up the shops with something he likes.

Good luck and I hope you enjoy a day out soon

My son (also 8)usually loves being out and about - but at 5-6 went through a difficult time(at school)and didnt want to leave the house. It was very difficult! I resorted to a pushchair too - it was too small and sagged under the weight! You have my sympathy - it is very restricting. The other thing I did was meet ds from school in the car, complete with car picnic, and drive somewhere like a park or river bank. Actually ds needed a longish (15+ mins) drive to wind down and relax. I then parked up and eventually got out, and started doing what ds likes doing (collecting conkers, net fishing, feeding ducks) or just picnicing on the grass near the car. Ds usually joined in although I didn't force him to get out the car. We never stayed very long but it got us out. I did the same with essential chores like the barber, or an item from a shop. Once home he would refuse to budge hence detours on the way home from school. Good luck.

Ps does your son like photography? Would a digital camera get him out with the rest of the family?

Both our ASD kids have aspects of what you're describing- ds3 with the PC addictiona nd not wanting anything more, ds1 with agoraphobia.

We ares till lucky that ds3 is at an age where we can just drag him outanyway (not yet 5), ds1 is harder but we can do a few things- camping is OK as its alwys the same tent, for instance.

DS1 is helped a lotm if he can take a notepad and list everything- eg items we buy shopping, or see on a walk.

digital camera is a v good idea, like that one!

guide books, or bird spotting books can give them a focus too I think

Thanks for your replies You've given me some nice ideas to think about.

I tried Beavers for a few weeks, but that went down like a lead balloon, it was just too noisy for him, and he found it really difficult to understand what was going on half the time. Lots of screaming and tears. Soon I have to book up for his SN's playscheme for summer holidays but he's refusing to go to any of them so looks like that's not going to be happening this year. A caravan holiday is booked up soon, and yet he's not wanting to go to that. He hates sporty stuff so football etc is out the question. He has no friends to play with, there's no-one that is actually prepared to come round and play with him in the garden.

The problem is he used to love the cinema, soft play, parks etc but now when I mention it he just gets all stressed and it seems pointless to force him to go somewhere that creates a bad atmosphere. Admittedly he doesn't mind it so much when he's there, it's just the getting him there in the first place that's the problem. Like your ds Peachy he is also obsessed with the computer, it's getting a really serious addiction that takes over everything in his life.

Yummymummy I like the leaflet idea, I wonder if I can get hold of some from the tourist board.

Magso, that is so like my ds, he will not budge when he's home, but if I mention anywhere after school, he just whines and cries. But I will organise a little picnic and take it to a park, which is a good idea because he hardly eats at school and is always starving once he gets home. He does have a digital camera which is buried somewhere but I will dig it out as he does enjoy snapping away.

Peachy you've give me an idea about birdwatching, I think I'll go out and buy him a pair of binoculars.

Thanks all

If he likes trees and plants or pond life it is all happening now. We sometimes watch the countryfile program on Sunday morning which gives inspiration or interest.

Hi, hope you are well.

My son has been playschemes over the summer but there is a lack of them for his age in our area so we went to social work and told them we needed a break sometimes.

They were great, did an assesment of needs and were allocated 4hrs a week care using direct payments so we could employ someone to take him out or babysit for us so we could go out.

If you dont already do this it is worth a thought as the carer we have is really good with his mood swings etc and it gets him out the house!

magso- one kids range do a little backpack with binoculars, book charts etc, ds2 has it

do you want me to find title? under a tenner it was

Thanks peachy- actually think I've seen it - or something similar in the bookshop- but we are well equipped due to Ds (obsessional)tree/plant interests! We have a RSPB place near by for bird watching with a childrens club that accepts ds(with parent). A cheap robust digital camera has allowed us to involve ds in things he has very little interest in. It is just aswell it is robust and we got it half price though!

i meant that for macwoopzy didnt i?

daft baby-been-screaming-all-day brain

sorry magso

we used to have fan place for nature types (NB not naturist lol) before we moved, must check out similar here for ds2 (fish and bug mad)

To be honest, I often feel the same way about going somewhere new, even after years of learning to adjust. For people not on the autistic spectrum, a park or day out can seem like a fun thing. For us with an ASD, it can be like attending a neverending fireworks display or sitting next to a pneumatic drill for hours. We can't recognise other people very well, we can't tell who's a danger to us and who isn't, and we don't know what to say or do. It's so hard to explain to others, because there's just so many things that are scary, so you just stop even wanting to try.

What helps me (and might help him) is knowing every single thing possible about the place. Photos, maps, exact timetables (as exact as you can be, anyway), taking something familiar and comforting with them, knowing where a really quiet corner is.

I contact events beforehand to ask about autism-friendly policies or plans. Some are really good and keen to know about the major "horrors" like flashing lights, sudden noises etc. The best recently was Ironbridge, where they even phoned me during the day to try to help. Maybe headphones or sunglasses would help, too. So does knowing that if things get too much, you have a plan to help him and will head for that quiet corner?

peachyhas4boysandlovesit,

Do you know what range does the backpack thing is from, it sounds interesting?

Stuart has his own calender , we write down the things he is doing that day so he is prepared and learns to look forward to things happening so he wants to do them.

amber - what you have written has provided a valuable insight for me who hasn't got an asd, but has a son who has.

Thanks

I also should have said - if things do get too much for me, very often I'm not able to articulate it that well. As an adult I don't then throw some sort of tantrum - I simply "shut down" and can't talk at all/will carry on as if I'm ok then really cope badly afterwards in private. It might seem like I'm not listening at all - but really I've just "tuned everything out" as a way of trying to cope. Children often haven't learned to do this yet. It really, really helps to have someone to spot the hazards and be aware of things that are going to be too much for me.

Checklist:

Flashing lights/flickering lights (those fluorescent ones are a nightmare if they go 'on the blink'?)

Sudden loud noises or high pitched grating noises?

Sudden unexpected big movements or physical contact from people? It's as overwhelming as there being an earthquake if I'm not expecting it.

Sudden changes of plan without announcement and without knowing what's coming next? I'm fine if someone explains the next thing clearly. I'm not fine if I don't know what we're supposed to be doing. It's SO annoying for other people to have to plan things around me, so mostly at this age I just cope as best I can, but it's so stressful.

Overwhelming smells? Perfume, smoke, engine exhausts?

Being put opposite someone and expected to make eye contact and social conversation for more than a brief amount of time. It's great walking alongside someone or sitting alongside them, but it's not great facing them.

People using non-straightforward language, like "take a seat" when they mean "sit down here". Take the seat to where, exactly??!

Your advice is really helpful amber, especially for my husband who shows a lot of symptoms of Asd (my son already has the diagnosis).

Unfortunetly my husband still throughs tantrums but they are becoming less often (he still likes everything planned his way but maybe thats a man thing)

I hope all the advice helps you macwoozy, have you been in touch with the Nas?. I did the help course and it was really interesting.

Peachy that would be great if you could let me know about the binoculars.

Yummymummy I don't think we'd qualify for respite care, although we are really lucky in this area for SN playschemes, Disability Challengers and Kids, and there never seems to be a problem getting a place, as long as you book well in advance. I don't know whether to take the chance and pay for several days in the school holidays in the hope that he'll change his mind, but I can't see that happening somehow.

amber, thanks for explaining that. I too find it helpful to get an adults perspective about situations that can make an person with ASD very stressed.

Thanks again for all your advice.

It is probably worth booking ready for the summer and then talk to him about it to prepare him.

We were lucky with the restbite care as we do not have family nearby and there is a shortage of playschemes, just been told there is a 3 year waiting list for the nearest autism centre.

Stuart also has a special passport book that he can write about himself and what he likes and dislikes and can be used when meeting new people and going to new places. We got ours from the school.

tinyurl.com/6peh5t

This is a link to the recent announcement about respite care. 'Every Disabled Child Matters' recently got the government to agree to offer much more respite care to families with a child with a disability, so it's worth asking the National Autistic Society or the local autism charity for your area about this as well as about playschemes/befriending schemes for any child with an ASD.

They might offer advice on stroppy maybe-ASD husbands too

If there is shopabilty / community transpot scheme in your local town centre ask if they have a major buggy to hire/borrow for a half day. In exeter you can hire/borrow one to use round town centre and down at the quay ( for riverside walk ).
Might help give your ds a safe space to retreat too when he needs it.

Thanks for the link amber, that certainly looks promising.

yummymummy I just don't feel that I would be entitled to respite care because he's high functioning. I've never left him alone with anyone in their/our house and I can only imagine he'd become very upset if we did. We haven't any family that can or are willing to look after him. I would love to go to loads of places, but I just feel at the moment we'll have to put that on hold until he feels that he can handle it. Respite care in the summer holidays would be amazing though, because 5 weeks of being constantly with ds will drive me loopy. Saying that though, I always did end up worrying about him whenever he did go to a playscheme and felt very unsettled myself so basically I'm a lost cause

That's the sort of thing I was thinking about UniS. But in reality I don't think I could ever do it. Although his behaviour can be very severe he is high functioning after all. I just wish I didn't care what others thought all the time as it would make my life a lot easier.

I dont really have any more advice at the moment , just wanted to to let you know that I can understand your frustration. Life with a asd child can be very hard for others to understand, my son has been diagnosed with pervasive developmentel disorder with is the docters way of saying he has lots of asd traits but not enough from aspergers or hfa to use those "words" as a diagnosis.

I was really stressed a few years ago and almost walked out on my life, then I developed a shopping habit as a way or coping with everything.

Getting some time for myself saved my sanity so I hope that he can go along to some summer schemes and you get some relaxtion in the summer.

The Nas have been great and have even helped with my stroppy husband as well as my stroppy son

Thank you yummymummy, you've been a great help. Sometimes it's good to just get these things of your chest. Thanks for your helpand it's good to hear that you've managed to overcome the really difficult times that you've been through.

will dig out backpack info

age wise, ds1 got it at 5 and I cpuld easily use it myself- amd so much of this is pictorial anyway isnt it?

Thanks macwoozy, I wish I had discovered mumsnet several years ago!, feel free to contact me anytime in the future if you need any more advice or just want someone to talk to.

That would be great Peachy , I am sure that it will come in useful over the summer.

Thanks yummymummy, Yeh mumsnet has given me some great advice over the years.