Being at home with ASD DCs - Can they occupy themselves?

[dontcountyourchickens]

Namechanged as I feel embarrassed by this.

DD age 14 diagnosed with AS four years ago. When she is not at school she cannot bear to be at home and plagues me with demands to go out. Pesters "what are we doing today" and won't accept any 'at home' suggestions. Literally drives us out of the house in her constant quest for stimulation.

Beginning week 6 of summer holidays and I am beyond exhausted in my efforts to entertain her. Has no socially based activities of her own so is dependant on me. I am so stressed as I don't have the money to fund this.

I tried to set up a summer holiday daily timetable - so each day is the same and has for example a morning trip out (park/shops etc) and an afternoon activity (craft/cooking). I thought this would work as every day the same and running to a schedule. But she doesn't like this and wants to be in control herself (yes, wants to go out to zoo, film, seaside).

She is very aggressive. DP and I have taken her out a lot in the past to simply bear being in her company and save younger sibling from her bullying. If we distract her we can be together as a family and she is well behaved when distracted. She is very hard to be around as she only has her special interest for conversation and I am bored senseless with it.

I have no family to help and friends I did have are repelled by her.

Has anyone else been through this or something similar?? We go to a support group and its mostly boys who sit on computers all day allowing parents to get on with things. We can't do housework/diy or anything that doesn't involve entertaining her. Our house is awful... She is worse at the moment as full of anxiety at back to school. One week to go but I feel so low I don't know if I can make it... I can't see a way to get through today at the moment.

Bump?

DS1 has to go out everyday. It's pretty exhausting.

Same here. I am currently ebaying all his toys., He is one of the boys who will stare at screens all day. He can't even go on the trampoline without me telling him what to do for each move. 8 days to go here...........

Thank you for your replies. It feels better to know I am not alone with this kind of problem. I know what you mean about the trampoline Ben.

Its her need for control that is so hard. I know an adult with AS who once said to me "AS is all about control" and I often reflect on that comment as I didn't understand it at the time he said it.

I am bullied by DD and she is physically strong and very very intelligent and manipulative. Breathtakingly selfish and arrogant....

I have read all the books, lurked on here for years, got involved with a support group but nothing makes our home life bearable. I really am reaching the end of my tether. DP is brilliant but he has had enough as well.

I guess it will feel better when school starts again but its hard to see it at the moment. It breaks my heart to have to detach from my own family so much. I just endure - and home is no kind of sanctuary from the rest of life. It is the hardest place to be and I hate it. I can't even think how to improve things.

Feel for you Dd1 was like your Dd and she is rarely at home now even though she has a lovely flat.

She is constantly sensory seeking and used to ping around the house driving everyone bonkers if we didnt go out.

Thank goodness Dd3 isnt as bad she loves to be out but can occupy herself well for a couple of hours at a time at home.

No suggestions, sorry.

I enrolled ds2 and ds3 (both ASD) on as many playschemes as possible, Barnardos, Mencap and the local council's Activate plus which meant they had 1:1 support. Its a bit late to be doing anything now but you could make enquiries for half term and christmas.

I feel for you too.

Ds1 is another one who tries to control the whole family. His younger brother gets the worst deal as they are so close in age and he expects him to do everything he wants, by his rules. By halfway through the first week ds2 starts to look pale and drawn and is desperate for some time away from his brother.

Ds1 is 10, ds2 is 8 and dd is 3 and ds1's desperate need for control is really hard on both of them. He expects far too much of dd for her age and gets very angry when she doesn't meet his high standards. This leads to regular huge bust-ups with both parties screaming the place down.

Ds1 is totally unable to entertain himself unless reading or on his Nintendo DS (or my laptop ). He won't even build with lego on his own, everything he does, he demands someone does it with him.

This holiday we set both boys different challenges, that meant they had to do different things each day (divide and conquer ). Ds1 had to learn to touch type and practise editing blocks of text and ds2 had to practise his times tables and joined up handwriting and learn to tie his shoe-laces. They got to choose either a lego kit or ds game to the value of £15 before the last week of the holidays if they stuck with it and they've both been and chosen second hand games from Game Exchange with dh this afternoon.

For days out we try to do all the free stuff. So library, city museum, motor museum and anything else locally that is lottery or local council funded. We also do country parks, dog walking and wildlife spotting, but we still end up spending quite a bit over the summer.

The other thing we did this year was buy the Star Wars original trilogy and use it for three separate home cinema afternoons with popcorn, snacks and milkshakes. (This was a risky strategy, because ds1 is phobic of movies, but he knows the Star Wars story lines inside out and was desperate to try and watch them - fortunately it paid off.)

As in your case, it is easier to be out and about, where ds1 is distracted, than it is to stay at home and we usually find we can have a nice time as a family if we get out, but it all goes to pot if we stay at home.

Ds would stay on computer games all day, if we let him, but he is only allowed and hour a day and often loses some of that for bad behaviour. I will admit to forgetting how long he's been on it for a couple of times this holiday though.

Meant to say. What's her current obsession?

Is there anyway you can set her some sort of challenge relating to that, that she can work on for the last week of the holidays?

What a comfort your stories are...

I can't post anymore at the moment, but will come back soon.

Basically, at 14 and very very intelligent she is beyond what she calls bribery!!!!

Do they do playschemes for 14 year olds? She has no friends and wouldn't go alone anyway... The special needs stuff never seems appropriate really, she has problems with sport (doesn't do PE at school)...she really wants to be with adults.

Thank you for your sympathy.

I will be back later.

I have had the same sort of day you have. My son has dominated and controlled 3 adults all day. We do not expect him to do anything that's not for him, it's simple, he just can't. He is dominant and controlling with other kids, I have to manage his play constantly and even then other children always end up in tears.the best times I have with him are when it's just the two of us( he also needs constant stimulation, not content to stay in). I plan days with him alone in mind, he loves other kids but has few friends, he is 4 so at the moment my friends are supportive. Short periods (30 mins) are often ok, as long as they let him be in charge! Life is difficult. When it's only me and him, it's easier ,mthere no one to need to control, I am at his disposal. He is also very bright, highly manipulative, yes at 4! And can be charming and delightful when his needs are met. He is also very physical, hits , throws things, highly impulsive and sensory seeking. He is also struggling with school/ nursery, hates going in,group things etc. He has a PDA , pathological demand avoidance. Children with PDA although it's on asd spectrum need very different handling from those with aspergers.

It's not easy with my son, but before I started using PDA methods, it was almost impossible. There is extreeme anxiety at the root of behaviour. If you haven't already looked at PDA , please take a look at the PDA contact group. I am not an expert, but you're daughters behaviour rings a lot of bells. If she has PDA , she needs different handling. And it does really has helped with our son.

mine attended a mencap summer scheme - they had a 14 plus group which my friends son attended and normally she would have said he would never have wanted to do it but it has been very sucessfull as the activities were age appropriate and he got a lot out of it.

I don't know if you have a smart phone (i-phone or such), but we have found Geo-caching to be great. The app allows you to search for hidden 'treasure' - normally an old take-away box with a few sweets and things in it, you replace the sweets and sign the paper.

What seems to work for us is you're using a screen and walking at the same time. Must admit DS1 (ASD) is much younger, but it helps get the kids out walking and physically tired which helps us with the aggression. We're running out of ones others have set up locally, so I'm going to set some up myself that they can hunt for nearby.

By the way, always carry spare 'treasure' in case someone's not replaced it!

DS2 is 6yo and loves to go out, but then cannot cope once we're out. DS3 is 3yo and hates going anywhere, so spends the whole time demanding to go home.

So I let DS3 have some time playing inside watching a DVD and let DS2 play outside in the secure fenced garden - and I end up basically spending time standing in the kitchen where I can see them both to make sure neither is up to anything they shouldn't be. Fun times. lol

We have 2 boys , DS1 is so anxious and has hardly been out of the house for last year and DS2 who loves going out, very active, the last year has been awful. So difficult to balance their needs and has taken a huge toll on us as a family.

I am hoping this year [ going from sept] will be better.. Both boys have autism, DS2 diagnosed and DS1 undx at present, DS1 high functioning Aspergers (?), though is the most isolated and suffering most.

We keep trying and my 'looking at the positive list is growing slowly!' :)

Thank you again for replying to this thread. It really does help.

Walter4 - can you tell me any more about the difference between handling PDA behaviour and Asperger Syndrome behaviour?? DD was diagnosed with AS by multi-disciplinary team at CAHMS. Would they not have spotted PDA?? Maybe not...

cjn - we haven't tried geocaching so I will look into it. I know someone who does it locally as she has large age gaps between her children and has found it is something they can all do together. Thanks for the tip.

triggles - I feel for you.

bjk - very interesting about the mencap playscheme. Thank you I will look into that.

moosemama - I love your ideas. Brilliant post. I was able to use her obsessions in the past as motivation for desired behaviour outcomes, but now she is unimpressed in a very teenage way to any kind of "carrot" (how marvellously neurotypical!!!!) I think when the teen hormones and GCSEs kick in its becomes a different ballgame. Also like many with AS she is very very intelligent and simply won't rise to manipulation from me no matter how subtle.

hothead - No, no DLA. I just can't face the paperwork and ATOS are known to not award for AS. They don't get it at all... I will try though. Short break respite through Aiming High has also now been cut by this government. When I got low before when dealing with DD I was told I don't qualify for any help as basically DD is not bad enough.

ineed - what is your DD like now? How old is she?

eatyourveg - thanks for the ideas. I am amazed your DC will just go along to these playschemes. My DD won't do anything.

Thank you so much for all the ideas and tips everyone.

AS alone doesn't get DLA... Cos AS on its own doesnt impair self care that much, and dla is about the help you need. They are just scared of giving dla to every computer-loving introvert.

Since your dd needs input all day every day, you just have to demonstrate why and what for. She sounds like anxiety, stress, sensory perhaps, might exacerbate the difficulties... If its written down clearly and the bits of the diagnosis are itemised, it should be fine. So AS yes, but list the impairments of communication, interaction, plus inflexibility and poor understanding of others' thoughts. Then the anxiety and aggression each count as diagnoses ('problems' in dla speak). Plus, as a child, your attempts at overcoming the problems count as therapy, so are 'care' for dla purposes.

Because telling a 14yo not to be rude is SLT-pragmatics, and worth investing in, telling a 51yo is a waste of time, not something the govt feel they should fund.

I am sending you a great big hug OP.

mine can - not always in a way I want them too!

ds1 loves his lego and computer and ds2 loves all his little collections of toys and objects.

Just wondered if your DD has a Statement at school? If so, you should be starting her Transition Planning. Part of that would be to get your DD to attend activities without you - which is a normal part of becoming an adult. If she needs support to do this then you would have a case for outside support to be funded.

Triggles - I end up doing the same, sometimes. Last year, DS1 was outside and DS2 inside, but this year is the other way around!

It worked great when i was busy in the kitchen one afternoon, last week, until I spotted that DS2 had sat on a shampoo bottle and got it everywhere just as i was trying to get stuff into the oven!

ouryve - I've just realised that for some of the day, I must separate DS2 & DGS1, even though they're roughly the same age. DGS1 is NT and more mature in many ways (and unfortunately more devious as well sometimes) and it can make things a bit difficult. So right now they're having a bit of time separately. It makes all the difference. Thankfully DS3 still takes a nap partway through the day (well, most days), so that helps keep the insanity in check.