going to try and have some me time.

well I have been a bit naughty, but I need some me time. ainsley sleep pattern is upside down, so I tried to keep him awake for a bit longer than he wanted, he went to bed at 6 am, if he had followed his own pattern it probably would have been about 4am. so not much difference but it means I can go out without worrying about him waking up and panicking "where's mum"! his sister will be safe in case he has an outburst, and he will sleep on obliviously. I was just going to leave him, he would have woken up about noon and his sister would have handled him until I get home just before 3pm, but yesterday when he realised I was going out today, he started acting up, winding dog up and demanding my attention by banging. this always happens when he knows I am going out and I usually end up cancelling. so this way hopefully he will sleep. if he wakes up earlier I ill of course come home early. I feel extremely guilty about doing this, am due out again on Wednesday but suspect I won't be doing that! I only want what's best for my kids, but I think my ability to cope diminishes if I am in 24/7, they don't need caring for just the knowledge I am here, most of the time, and I feel like I am slowly becoming brain dead. so today, with Ainsleys sleep pattern fitting in with my plans , I will go out and expand my brain by attending a property care meeting. am I a bad mum. I hope not.

why don't professionals listen??????

Kathryn went to the Bristol Autism service last November, after years of battling, to go through the DISCO assessment. after 4 sessions, which I sat in on as she wouldn't do without me, they ummed and ahhed between ASD with social anxiety disorder or social anxiety disorder with very strong autistic traits. they landed down on the later, pronounced with CBT she could be cured and sent us away! during the assessment I couldn't believe the coaching, at one stage she was shown a dvd, bad acting, of a relationship, at various stages this was stopped and Kathryn was asked to interpret what was going on, inevitably she didn't get it and said so, dvd was often rewound, explained to her then questioned explained to her, then she got it. well apparently by getting it , however it occurred, showed she had empathy, she couldn't be on ASD spectrum. what a load of rubbish, people with ASD CAN show empathy and actually in this case she wasn't. anyway a few weeks on and report arrived, it also stated she had no sensory issues, rubbish , as I had told them, she has loads, sound, taste, smells, touch she reacts badly/sensitively to much of the world. also the report said no obsessions, want to explain to me the constant watching and rewatching of amine, or the 101 china birds lined up in an exact row.! I actually agree she has social anxiety disorder but I believe its caused by her being on the ASD spectrum. anyway one of the suggestions was Kathryn had a referral to the Fairbridge programme run by the princes trust. we got contacted about it today. she would have to get into and through central Bristol every day, she won't go out of house alone, and shakes and gets very upset because all people are scary. then, according to the website, she will be spending her course with 85% of those who are homeless, substance misusers and offenders, she'll love that! being near someone who smokes makes her vomit! I spoke to someone who works on youth offending team a while ago, he says there is no way this is suitable for Kathryn and no way I can send her on it. wonder now how to convince the GP who is still convinced Kathryn's only issue is being chronically shy! I really have to fight the original diagnosis as wrong, but have let it drop as I am just to exhausted with day to day life to complain and fight for everything. why should I have to continually fight for my sons and daughters and for myself to get the correct diagnosis's and support that we really need. why don't the professionals listen to my and my kids issues and feelings. we lay ourselves bare to no avail.

Another sleepless night

Ainsley has been on a cycle of sleeping days and waking nights. in some ways there are positives to this, it means I can escape, if I time it right, for a few hours during day without a meltdown but..... last night was a classic, Ainsley woke up at 7pm! just in time to interrupt myself and his sister watching, in peace the Eurovision semi finals! first, he stinks, so its really hard to be in the same room as him, but he decides on waking to spend some time with his family in living room, this normally means he what's something but I have to play 20, usually more, questions of what, food, drink, etc.? then he wants me to get it prepared for him! he can't ask but know this breaks my rule of I only prepare food at main meal times. when I don't get what he wants straight away he moves onto winding the dog up, he know this is one of the best ways of getting to me....thank god for sky's pause feature, means after I finally sort him out daughter dares to come back into lounge and we can watch TV together. when I go up to bed I follow my nightly routine, don't know why I bother, and venture into his bedroom, gas mask required. I explain to him his new desk chair (birthday present) is due tomorrow and at nine in morning I will need him to carry the broke one, he has destroyed in about 3 months, now a 3 legged one armed armchair from free cycle! downstairs and then we will hoover spot before new chair gets to enter room. I also retell him night rules. NO noise, I worry about neighbours, NO going into his sisters room, NO going downstairs raiding kitchen and NO noise! huh what a waste of energy, within five minutes he is downstairs in kitchen, first of several trips. then he moves around for next few hours, I manage to snatch some sleep, but at 3am I am woken by him chatting to sister, when confronted, WE ARE NOT MAKING A NOISE, shouted at me! for once sister remains tolerant! then he announces I have just taken chair downstairs and am moving my room round. my poor neighbours, I am now expecting complaints today, how do you explain this to the housing association anti social behaviour officer! I try again at 5 am to ask for a bit of quiet, this results in him turning his fan on high and sticking a pencil into it, what a racket. I give up on sleep , take dog out and get up for the day. shattered! sometimes as a parent of a PDA teen you forget to react/act appropriately towards them so they react correctly, I find the more I suffer from lack of sleep the worse I react the worse his behaviour becomes. so this afternoon I will be catnapping!

old blog

a couple of years ago I started a blog, BADTEENMUM, which describes my youngest sons behaviour, at the time I was being told it was bad parenting, its since been suggested its PDA, because my coping strategies have relaxed and improved with time, his violent behaviour has also improved, but it may be of interest to see what life was like a couple of years ago. http://badteenmum.blogspot.co.uk/ grace

sleep is highly overrated xx

Sleep is highly overrated is a common saying of my youngest son, its only recently I have come to realise this is a symptom of PDA and not bad parenting! at the moment we are doing a 22/6 hour sleep pattern, and last few days both son and daughter have been in nocturnal mode! both have different reasons for not sleeping. Ainsleys body clock seems to run on a stretched out day where he stays awake about 18-22 hours and sleeps between 4 and 12 hours. he slept from 9am to 5 pm yesterday and then has been awake since. since he has got older, and I have stopped fussing he , on the whole , is happy to sit quietly in his room with his headphones on playing on his PC when awake at night, but last night he fussed, he spent half the night fussing with his door, then a good deal testing out the squeaky floorboard he has discovered outside my bedroom door, when this fails he finds some excuse to come a discuss something "important" with me. what he really wants is some attention, it an be boring during the night! what he really wanted last night was for me to come downstairs and cook him a meal, well its 8.30am and he is still waiting, but wants burgers for breakfast, how long can I resist! Kathryn, on the other hand, doesn't sleep at night because the dark is scary. at 21 we should have overcome this, a light on makes no difference as she says its always going to be scary if its dark outside, only good thing with summer here means light mornings so she goes to sleep about 5am! she also has to sleep with her ipod on the same cycle of two tunes she has listened to at bedtime for over 5 years, these are classical tracks from the transformers movie! and build up to a crescendo before quieting down again then building again, this has to be on the whole time she sleeps, if interrupted, like by a brief power cut yesterday morning, she wakes and doesn't sleep until the next morning. all this lack of sleep means "normal" life is very difficult, I would love to go out for a day trip somewhere with at least one for company , even with all the accompanied panic of being out side and being near scary people, but I feel tied to the home or the near vicinity, because if either awakes when I am not here panic results, also if one is awake, normally ainsley, he cannot resist waking his sister and with both having violent outbursts its easy to picture a bloodied mess if I am not around!

to much to ask for??

over the last few years I , and the kids, have had countless assessments of needs. I am happy to care for them but am always asked the same question.... if you could have one thing that would make your life more liveable what would it be......and for many years the answer has been the same. a couple of hours a week to walk slowly around Tesco and enjoy shopping, without the risk of either the phone going "where are you", or the accompanying child/adult have a panic attack because I suddenly disappear for a couple of seconds behind a tin of beans. guess what it still hasn't happened and I have got my doubts that this one, relatively simple request, in my opinion, never will!

verbal punchbag

well Friday and Saturday have been super emotional. I decided we won't move, just don't have the energy for something so major at the moment! then I went to a session with Alliance living Friday afternoon, a forum where my opinion was asked for and respected, I'd forgotten what it was like to have my opinion to be respected! anyway there was an offer of either a carer or some support so I could continue to attend sessions in future. I felt liberated, it may only be once a month or so but WOW!!! unfortunately the news didn't go down so well with the kids, Alex, , in particular has really become resentful of me having my own life and my own opinions. a classic , on Saturday morning, "you don't deserve anytime off", he argues I should devote myself to him and a bit on side to his siblings 110%. for someone who is verbal articulate and highly intelligent he just doesn't grasp the fact that I need my own space. I can understand the demons in his head are driving him but after several hours of being ranted at, "you just don't understand me", "you should do it my way", for fecks sake what has it got to do with him if I was my filters in my hoover out everyday, I don't, he does, but I finally finished talking with him, well that's wrong being talked at by him would be more appropriate! by hanging up the phone and refusing his calls the rest of the day. and how does mum feel, black and blue, as if I have done 10 rounds in a boxing ring. but then , I know from experience, the next thing will be an overdose from him, it may not be today probably be a while away but he will link it all back to me hanging up the phone on him, to not understanding him,to cope with as well. I can hope it doesn't happen. but this ranting and raving is getting to be a daily habit, not only does he want complete control over his life, eg the bleaching and scouring of his body, he wants complete control of mine, what I do and think. and I can't allow myself to remain a victim to his control and abuse any longer. the sad thing is he has no one else, and when those demons in his head are chased away he is the most warm , funny , loving , caring soul. but at the moment the demons are winning and I as his mum can't do a dam thing about them. I'd like to add for years I suffered physical violence from my youngest son, not anymore as he can now, on whole, control himself, verbal violence is just, if not more, hurtful.