coping with an aspergers child in the holidays - any tips please!!!

[briarrose]

Hi everyone

my dd is 10, nearly 11, and has aspergers, her behaviour can vary between fine one week, and then all over the show the next.

This holiday it seems worse than it has been for a while, and I seem to spend most of the time telling her to stop doing things, or reminding her to do simple things.

I have 2 dds, my younger one does not have aspergers.

My patience is starting to wane now, and I went from really looking forward to spending the holidays with them to being ratty and moany.

dd with aspergers is addicted to the computer, and if I let her play on it all day there would be no problems, and she really is very adept at using it. But I don't want her sitting around doing nothing.

I've worked with children for all of my adult life, i'm doing a bloody degree in early childhood studies!!!! but i'm finding it really hard at the moment.

Lack of money doesn't help!

dont have any ideas i'm afraid but my dd is 4.9 and has asd (likely aspergers) - her behavious is all over the place and like you i really wanted to enjoy the hols especially as she starts schoolin September but i'm not. Again she would spend all day on the computer and ds if i let her. Very difficult to get a balance especially as she's no problem and well behaved if she's doing those activities! I was going to post similarly only more along the lines of lost my way a bit! I'm at ap oint wher ei dont know what to do with her and how to try and positively improve behaviour. Just seem to spend a lot of the day in tears as we go from one meltdown to another. Sorry t hijack a bit but i completely understand your post. Does your dd have any special interests? Could you do anything revolving around those?

As someone with Asperger syndrome, I'm quite likely to spend anything up to 12 hours a day working on a computer or scanning for interesting messages, emails etc. It's the 'home environment' of many of us, because we can cope with the way it's set up and there's no surprises or body language or facial expressions or tone of voice or sudden touching or weird smells to have to cope with, unless we find an online bully. It's home to us.

That's a very difficult thing to understand, I expect, if you're used to thinking mostly about social relationships and different activities and how unhealthy computers are supposed to be, it must seem like you'd be a really bad parent to allow so much of it, but we're very different.

If your daughter has another hobby that totally fascinates her (no matter how bloomin' weird it seems to you) that would get her off the computer and moving around a bit, get her to do a set time on one, then a set time on the other so there's an expected routine. That'll seem mighty strange to you, but we'd hug you for it if we could manage hugs that easily (some of us can, not me though).

If you're intending to socialise with people, a) warn her well in advance. Are there photos of the people who will be there? If it's somewhere new, are there maps to where it is, photos of what it is, descriptions of each part of what will happen? Make or find a safe space for her to escape to, so she doesn't have to do the social thing all the time. Let her bring something to totally focus on.

I get through meetings by finding something that fascinates me. Like when I visited a Bishop,and he had a map on the wall in the waiting room. I've no idea what his secretary was talking to me about but I can tell you every detail of that map and what was arrowed on it etc. Wonderful. It allowed me to cope with the stress of actually meeting said Bishop without shutting down and having a real problem.

Briarrose, I really feel for you. Big hug!

Liked reading your thoughts, Amber32002, it's nice as a parent to get an insiders view.

My youngest DS is 7, ASD and not terribly good on the verbal front. The only thing that really works for me during school holidays, though I find it really exhausting, is to plan the day before what we're going to do next day. I used to use a bank of photographs to show him, these days if we're doing something he hasn't done before, I have to draw a picture (as best I can, I'm no artist) He will have a massive tantrum unless he can understand where we're going or what we're going to do.

I use an egg timer to prise him off his beloved computer. He is now quite accepting of this although he will still have a token protest.

Holidays are really hard. Much as my DS gets very excited about being off school, he's much happier when school returns and everything gets back to normal. He hates the unpredictability of hols and starts inventing new routines to reassure himself. Ah, the joys...

Amber your post was fantastic, thank you so much. It is really good to hear from an insider!

Kodathekat I think the planning thing is a good idea, I think a lot of the problem is me, if I were more organised she would cope better.

Also, there is so much bad press about computers and kids, but she really is so good on it, and it keeps her calm. She can also have a conversation about it, whereas if she is left to talk about something else the silly noises start and you have no chance of a conversation!

really great chat guys, thanks

Hi my son is 10 nearly 11 and has asperger's. I allow him loads and loads of time on the computer, if he's happy I leave him to it. I've long since stopped worrying about how unhealthy it is, as 'normal' rules don't apply when dealing with ASD. When I need to go out or want to get him some exercise, I tell him in advance and if he's really not up to it, I won't go out unless essential, but most of the time he'll happily come out as he knows there will be a treat of a drink/snack at some point, and this motivates him no end!!

My sympathies to you though, I've had some really horrendous summers, maybe I'm just used to it so it doesn't seem quite as bad this year, or I've lowered my expectations lol!

Hi

DS age 11 has AS, and/or semantic pragmatic disorder (different diagnosis from previous postings now he's had the ADOS). He also likes to spend most of his time on computer or ds type games. Recently told him he has to spend at least 10 mins per day in the garden/daylight for vit D production and he accepted this very well. Sometimes we say he HAS to accompany us to the shop or something for exercise - we don't expect him to be interested or keen! Oh, and we got him out to our new allotment with the bait of having a bonfire.

Thank goodness I'm not the only one!! All your posts are really helpful, and have soaked up all your advice like a sponge.
My aspergers boy is nearly 6, and this is our first school holiday experience (last year was a really horrible school experience, so I'm not even counting from when he started school at the age of 5. We've since moved him out of mainstream into learning support), and I can't say it's been a good one. I guess the lack of predictability and the frequent changes in routine, has triggered his anxiety, and sent his sensory issues into overdrive and we have had at least a daily meltdown, sometimes more. I am exhausted!!
It hasn't helped that everything we have done and everywhere we have gone has been really busy, noisy and endless queue's (James does NOT do queueing!!) have triggered meltdowns. Even a trip to the park with our bikes which is usually a good activity was a disaster! Watching all the Mums sit down in the Autumn sunshine in the park from a welcome break from the rain with their picnics and takeaway coffees was really hard as James was unable to cope with the crowds. I felt like an outsider.
I find public meltdowns really hard to take. I just can't cope with the stares and the judgement of it all, it usually has ME in a meltdown when we get home, never mind James! I have a sore and bruised face today from a trip up the skytower yesterday when James grabbed hold of my face and wouldn't let go, through screaming obscenities at me (God help me if he ever hears any swear words, I think I shall go into hibernation). Oh the shame!! Even if people are nice about it I can tell they are thinking "Thanks God that's not my child'
So, towards the end of the school holidays, I feel like I have been through the spin cycle of the washing machine and been spat out the other end. Now I have to deal with the transition back to school.

my dd loves planning things on the computer, if we go on holiday she will do a daily plan of activities in the area we are going, this way she is calm for the trip as well,for school holidays she plans a daily routine, i sit with her so she doesn't overspend, i have just started giving her a budget so she knows how much money can be spent that week/day, my dd loves dogs so some of the time we go to animal rescue centre and she can walk a dog or 6 lol, i find that allowing her to do the planning and getting her to fit my shopping etc into her plan helps loads.

>amber: I've no idea what his secretary was talking to me about but I

can tell you every detail of that map
Sorry to be blunt, but what was the point of the meeting then? And what was the point of wasting the bishop's secretary's time?

That was perhaps a bit harsh...I am presuming that Amber means waiting for the meeting... as she does refer to the waiting room, perhaps the secretary was trying to be polite and chatting, not realising that the interaction was adding to the stress of the occasion for Amber?

Sorry, maybe it was. But Amber saying "wonderful" to summarise memorising a map while someone was talking to her (either being kind or giving information) just pi$$ed me off a bit. :(

Amber - your post was really helpful thank you! I have often thought the computer is like that for my DS but as he is 9 I still go through a lot of either frustration with him that it is so hard to engage him in other things or being cross with myself and feeling guilty if I leave him happily to it and get on with my things.

He does seem to like to be 'helped' off the computer sometimes, but as soon as he is uncomfortable will go straight back to it. This holidays we have tried to have one planned activity every day, even if only very short and I think Tellyaddict I need to do the same as you and stop worrying.

What you describe about the meeting Amber also puts into words what I think my DS does too, perhaps not with the same awareness as you but from how you describe it I think it helps him in the same way. Obviously he doesn't go to meetings yet but will pick up on something completely unconnected (to us) from events.

mumslife I was reading with interest everyone's posts on this thread.
We've just had the holidays with no computer or Nintendo but with a telly and plenty of DVDs and videos. Ds2 did not really join in any group games (there were lots of children playing hide and seek, tag, just hanging out together stuff) but he seemed completely happy to just ride up and down on his bike (we were in safe country setting) or just anything which was not competitive running.
We had a variety of tantrums from him, mostly to do with feeling left out, or being teased, or being asked to do something he disliked, like washing his hands, or getting dressed when he wasn't ready etc.

I found the more exercise he took the happier I was to then let him lapse into a world of his own, in this case endlessly watching Star Wars, Lord of Rings, Thunderbirds. I think he had about 3 hours screen time a day which seems a lot, what with CBBC when he awoke and a film later on in afternoon But he seemed to use what he'd learnt to play games with later. So for example he reenacted Dambusters with a four year old and some army toys. Once he was kickstarted into some theme he happily played away.

I was also suprised that he seemed to manage football so well, as in previous years football with his peers as led to screaming tantrums when he thought he should have had the ball, or got hit by accident. But for some reason just the sheer running around seemed to calm him.

I tried a computer/telly ban earlier this year, and noticed that ds2 was the only child who really could not cope, it was almost as the computer really did play an important and therapeutic part of his life (not that he went on it that much, just that hour was indispensable to him)

Anyway we used telly to calm him down, or early bedtime whenever he got very very upset about things, as you all say it seems a perfectly reasonable way to get my ds2 back on track.
The other thing that really calms him and energises him is water, although at first he seems reluctant, once immersed (bath, pool, paddling, freezing lake) he seems completely happy.

Briarrose my impression of ds is that he usually says he doesn't want to do something, then if he can just break through the "pain barrier" of its newness and link it to something he understands he is fine. He is a real master at winding me up by saying he hates doing something or it is boring, when it is more that he wants me to persuade him he likes it, and show him lots of attention getting started. His interest in Lego entirely stems from the hours Dh used to spend building sets with him, I don't think he would have ever played with it otherwise.

The other thing I notice is that ds2 particularily likes watching films with a parent (especially the obscure films) I think he finds it much easier when there is someone to answer endless questions and talk about it with afterwards. It could be that your daughter likes something which is interactive but not demanding of her social skills, and of course computers fall into this category. BUT there are other things which are interactive but "safe", and I think my ds finds talking about a hobby with a fellow enthusiast a very "safe" interactive activity. For example, he loves conversing about football with his brother, who otherwise he doesn't get on with that well....

alliezz I'm not sure you get what I mean.

Lots of times people try and do things they think will 'help' or be welcome. and for most people they would work, for some of us they don't.

my dh is physically disabled (a degenerative neuro muscular disease). Lots of times we go for meetings about ds (ASD and LD) and there are low 'comfy' chairs to provide a welcoming relaxing environment. DH usually ends up led on the floor, (so he can remain and take part in the meeting).. quite dis-respectful if you walked in and saw him...

If Amber was in a stressful situtation waiting to see the Bishop, and the secretary thought she was helping by chatting away Amber had three choices, use up her 'personal resources' to make small talk... Risk offending the woman by saying actually it would be really helpful to not make small talk and to just loose myself in something to manage my anxieties, or just keep quiet, answer minimally, concentrate on what enables her to cope, marshalling her resources for the meeting.

(my apologies amber for impuning/extrapolating what you may have meant.)

PS amber I know you are not around much at the moment, I hope you are doing ok and treatment is going ok...

signandsmile, thanks. Long operation yesterday to put in a portacath so a bit woozy but still going. Chemotherapy again next Tuesday.

Alliezz, I've no idea why you're upset, I'm afraid. A meeting with a Bishop is a terrifying thing for me because of the pressure to get it absolutely right, and it wouldn't have mattered who was trying to speak to me at the time - my brain automatically 'powers down' in stressful situations by finding a visual image to focus on. Had the map not been there, I would have panicked and left the room altogether. I did hand the secretary my autism card and when I'd had a chance to calm down, I did re-ask the secretary what she had said, if that helps? But why are you upset about it? Was it that I didn't put enough detail into the post two and a half years ago? Hopefully I'm improving my communication skills now...

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