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I dont know where to start....

(4 Posts)
fairychronicle Fri 09-Nov-12 15:53:03

I'm sitting here completely bewildered and sorry I don't mean to sound self indulgent or sorry for myself. My dd (just turned 9) has a diagnosis of Aspergers, ADHD ODD and most likely and I think most prevalent, PDA. She suffers a lot with anxiety but is aggressive and has a lot of "meltdowns" "explosions". I also homeschool her (however loosely you want to use that term at the minute!).

She seems to put objections up to everything and anything, ie getting dressed, I understand all the sensory problems this can bring but I dont believe its just those. She started this morning by getting up about 6 needing the toilet, She went back to bed with the ipod and a snack because she doesn't get out of her room until her alarm goes off (and is very rigid about this). At about 7.30 she ran into my room shouting help, help, her pyjamas had got a small hole in their bottoms. I said its ok,we can stitch it up. She wouldn't listen at all, wouldn't put anything else on
(even though she said she couldn't stay as she was) blamed her favourite "toy" and shouted at it, kept shouting HELP at hte top of her voice and crying. There was nothing I could do , its like she wants me to do something but not at the same time. Eventually I went back to my room, to which she followed me and then got into my bed, which I had been making, I was told not to make it as it was still night! She got in and the weight of our heavy duvet and throw on top seemed to calm her and we got sorted. But the whole day has been like that,. I tried to get her dressed but she objected screamed and ran off, took all her entire clothes, pants, socks everything out of he rdrawers and ending up still in her pyjamas.

She has a complete obsession with certain toys. Fijit friends mainly, monster high etc and these are not toys, they are living beings and she calls them mini friends and woe betide if anyone calls them anything else. She seems to think they can make everything better in her world of confusion. She had a new one yesterday, an early Xmas present as Xmas is a huge time of uncertainty we sometimes spread a couple of presents out. Because the hole in the pyjama incident this toy was no good and she needed the next one. I'm assuming in her mind once she got the toy no bad would happen and it did. She has since played with it fine but its in the moment that this happens. I just dont know who to deal wiht it any more. I 've spent most of the day crying (
which isn't like me) and not knowing what to do for the best. The resistance to doing what needs to be done let alone anything else and the constant obsessions and needing to have things is really taking its toll. Believe me I completely undertand (as much as anyone whose not on the spectrum can) how much her anxieties etc envelop her but am just now running out of steam. I'm sorry for the long post but I need to pour itout somewhere.

Thanks

Ineedalife Fri 09-Nov-12 16:08:35

Hi fairy and welcome to the board, your Dd sounds very full on.

Do you get a break at all?

Do you use ASD strategies with your Dd or PDA strategies? I have been reading about PDA recently because my Dd3 can be demand aviodant. She has a diagnosis of ASD but is very high functioning so we say she has aspergers. So far from what I have read the PDA strategies wouldnt work with Dd3 because she is too literal but I wonder if they would help with your Dd.

I bought the book Understanding PDA in children from amazon for £11-£12.

I use a lot of visual stuff with Dd3 but I am sure you have tried all that.

I am sure others will be along with something more useful.

Try to be kind to yourself and get a breaksmile

Walter4 Fri 09-Nov-12 21:57:07

My son aged 4 has PDA so I know exactly how totally exhausting it is. What you discribe is our life too, constant obsessions , needing to acquire new things in order to make things " right" dressing issues and on and on......extreeme anxiety about, everything's really, imagining worst case scenarios and dreadful with other kids.
The PDA book is great, as is the PDA contact group.
What I have learnt, so far, is to remove all demands that aren't essential and use humour, distraction, being silly(you that is!) and compromise and novelty.
I dress my son while he watches tv and eats his vitamins, we don't discuss it , I warm his clothes on radiator and ask if he wants top or bottom first, no request at all. If he resists I begin to joke , the more silly the better. Its draining, but the alternative is worse. Gradually we find we can now make the odd request without him going crazy and totally refusing. Also being indirect and then walking away and letting him respond in his own time is helpful.

I sympathise with the toys that are real ....I always have to be their voice too, spent all afternoon talking like a chipmunk !!! smile

fairychronicle Sat 10-Nov-12 18:20:17

hi thanks both for replying. Yes I do have the PDA book and am re-reading it again at the moment.

Ineeda life I find visual stuff has never really worked with dd as she usually finds something in it to argue about or if its something she doesn't like then we can't get past that.

Walter - thank you - it helps knowing someone else has the same problems! Regarding the "having stuff to make things right"- how do you deal with this? I often try with distraction humour etc and it can work but she can get quite wise to it at times so know I'm trying to get her to do something I want! I've also tried using the "toys" to get her to do what I need which does have some success.

We're seeing a psychologist who specialises in PDA on Friday and I'm hopeing he can not only give us strategies in order to help her deal better with demands as she will have to do this at some point but really in knowing how much to ask of her ie - if she doesnt want to get dressed one day don't let her. Also as I homeschool her it can be really hard, we don't do structured schooling but anything I might want to do with her is met with all resistance, with things like I don't do learning, etc She uses her favourite toys, fijits, to help her not do things, she says is fijit law or something might go against fijit lover rules etc so she doesn't have to do it!

Thanks again for your replies

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