feels like another kick in the teeth

Well according to Alex I need to "grow up" and become "less immature" and I am also "dangerous" because I am a failure as a parent and carer because I dare to say no I won't be told what to do. then he has his , abusive, father to stay, and I have an email from him as well to say he doesn't feel I am fulfilling my parental and caring duties properly, because 1, I dared to have a relationship with someone, and 2, I take time out to be myself. this of course as greatly disturbed Ainsley and Kathryn. Kathryn doesn't understand what she wants she feels torn between wanting to live in a safe zone with no pressure , but also no support, which would mean her moving 200 miles away to stay at her dads, and living with me, where I am always there for her, except when I go out , very occasionally, but where I try to encourage her to go out and meet people, help around the house by doing small basic chores, and communicate with me and Ainsley. after lots of upset she has decided she is going to stay with me. then ainsley, upset over this, internalises everything. he is also worried about college restarting next week, college, where he is on a special needs course, but whom don't seem to recognise his special needs. Yes we had a letter, registration 10am on Wednesday 3rd, that means we get a 2 1/2 hour commuter packed bus ride leaving at 7.30 am, and same back, followed by same to meeting the following day to discuss how to handle his anxiety at a pre course meeting. for someone who doesn't like people you can not imaging how difficult, no impossible attending either one of these will be, and if we manage first then he will be to ill for second and we will be accused of not cooperating. I dread the thought of the journey let alone him. And doesn't want to see , or talk to, his father at all, which of course Alex, is delighting in calling us up on and ranting about our immaturity!. this means increased internalisation of all this anxiety equalling his soiling increasing, he is showering several times during the night, why during the night because as always when under stress his sleep pattern also goes belly up, so he is up all night, needing lots of reassurance and calming down, and sleeping in day. this of course leaves me exhausted. on top of the possibility of moving house, to be nearer support systems the kids and I desperately need, and having a garden, something I need so much for my mental health, has once again been dashed. last week I had positive meetings both with the social worker and a housing support worker, about getting welfare priority. they both seemed to think we could be moved by end of year at latest, house/garden/suitable area etc. before Ainsleys funding for a taxi runs out at end of October was even seen as a possibility, then they returned to their offices, spoke to who ever they speak to, and now I am being told, welfare priority is near on impossible to get, so register with exchange sites, DUH!! why didn't I think of that before, OH yes I did, been registered with them for years but NO ONE wants to move to Pill, no one with a 3 bed house in a more convenient location wants to exchange to a 3 bed flat in an inaccessible location.

living in their own world

Kathryn was trying to explain to me what its like to be her. she says she gets lost in a fantasy world inside her head, and she finds it difficult to separate that world from a reality. she believes this fantasy world is real, I am unsure if she is still Kathryn" in this world or morphs into different beings. I do catch glimpses of her world. like the fact her ideal "man" her "dream date" is actually optimus prime, a transforming lorry/robot, I think she sees him as a protector something many in her real life have failed to live up to. she likes to dress up in Japanese amine costumes, apparently its called colsplay! and when her and Ainsley are in full flow they talk a language, at 100 miles an hour, that I cannot understand. its like their own shared world. Although Ainsley also likes fantasy, and can get lost in it, he does believe its a reality like Kathryn does. he spends hours reading "fan Fiction", a form of story online where fans of anime write their own stories. he also enjoys playing games like "world of warcraft" and "assassins creed", where he can lead the characters through quests and challenges. In this online world Ainsley is happy to interact with other players, again unlike Kathryn, who although plays "world of warcraft" with Ainsley really struggles to even interact with other online characters. so I have concluded they both need their fantasy worlds for different reasons, and they can both get completely absorbed into these worlds to the exclusion of all else. Kathryn because it is her whole life and Ainsley because it provides a social interaction he so longs for but cannot deal with in real life.

fire safety and home alone

As I have been increasingly trying to leave the kids at home longer while I try and get some light I pondered what would happen in event of a fire or emergency. asking ainsley, who is master of planning emergency due to his obsessions' with extreme weather I was pleased to hear he had all exit strategies covered. that's if he managed to notice the smoke alarm going off, he tends to get so absorbed in whatever he is doing he often fails to notice anything. but he knows all possible exits, getting pets out, staying safe etc. even suggested calling fire service after calling me! but Kathryn is more a worry, she confirmed she wouldn't get out of house, her "stuff" is to important to her so she would shut herself in her room, and she wouldn't phone anyone. I think I am going to have to work with her. anyway I know she would be completely absorbed in whatever she was doing and she would at no stage notice the smoke alarm going off, she just loses herself in fantasy worlds and becomes completely detached from her physical environment. I also have asked them both what they would do if they woke up and found me very ill or even dead, both say they would just carry on, no need to do anything/or call any one. its nice to be cared for!

my mental health

this weeks after many years of it bubbling under the surface a great big gaping black hole opened up in my chest. everything between caring non stop, feeling isolated and my recent break up caused a recent storm and I disappeared. I have been diagnosed with depression. But I really don't want to take drugs so I am going to take to making myself exercise me and improve my diet, and have CBT. tablets are not going to take my issues away just space out my mind, really the only way to solve things is for stuff to change. I really really need to move, so was devastated to find out my plea for priority banding for medical reasons has failed, I am now looking at welfare priority. where we live now is so far from any support services for both me and the kids. I also feel I need the exceptional circumstances of my kids never being able to leave home and need to be allowed to have a house, at moment these are restricted to families with children under 16, well Kathryn maybe 21 but she is more like 10 in her behaviour, and ainsley isn't much older. the garden has also been my refuge, I love, really thrive when I can grow stuff, and yet with only two balconies here I have such limited space, which is now overflowing. also flat living does not suit the kids, Kathryn hates the communal stairwell, he sensitivities go into overdrive and lead her to more and more becoming isolated in her own room. and ainsley, with his bowel issues, well we need the washing machine on 24/7 and you can't do that when its over a children's bedroom, in the flat below. then there is the area we are in, beautiful and picturesque, but so isolated. everyone here has been here years, and have strong , very hard to penetrate networks, the social life is the pub and the one support I had, the carers group, closed at the end of last year. ainsley has a taxi for college, but only for 6 weeks after that he will be expected to journey 2 1/2 hours each way on a minibus, he didn't cope with that last year and dropped out so I know that is undoable for him, so we need to move very urgently. and for Kathryn and me, to be within a bus ride of Weston would , hopefully, open up our horizons re joining support groups. we also have several friends in the areas we would like to live. on top of this need to move I miss Jeremy so much, he was my best friend above everything else, and supported me to be able to fight for what I needed. he has now completed cut me out of his life. I just wish I could get thoughts of him out of my head. then there is the continued fight for diagnosis for both ainsley and Kathryn, kathryns is somewhere in the systems, being relooked at, I am now highly suspicious that she also has PDA, and ASD same as ainsley is supposed to have, but adult services do not recognise this diagnosis. and ainsley is STILL on waiting list 20 months after being added to it! even the MP is failing to get a definite response on when anything may happen! and with out the correct diagnosis we don't get any support.

summer holidays

because my youngest has gone past school leaving age school holidays have less impact, or so I thought. unfortunately all those activities that I need to keep me sane also close down, or at least slow down, and I find myself sinking into a depression. its really lonely being a carer. especially when your son announces he doesn't want to go out again ever and your daughter goes to stay at her dads. this means I have to stay around home to take dog out, teen sons dog, but he won't take her out! yet being stuck at home means I have no one to talk to no one to keep me sane! I feel like I have sunk to a pretty bad low at moment, and of course the kids don't get, or want to hear about, anyone else's feelings or emotions. I have been trying to keep myself busy, I tried volunteering in the village charity shop, but it was so boring.... definitely not me hanging other peoples used clothes on hangers for hours on end! I need to keep my brain active. so I have committed myself to a more intensive role with my housing association, I just hope the kids let me fully commit to it. I don't think the time has come where I can get a paying job, I just can't make that commitment, not when the kids can be so volatile in their needs for my time. we have also applied for priority to move. flat living in a remotest village just doesn't work. following a Team around the family meeting, where the only professionals that turned up were the social worker, and CAMHS, and they both sat there and told me there is no support available, and I can expect Ainsley and Kathryn at home until I die, I insisted if this was the case we, ME, need a house, with a garden, gardening has always been a therapy for my head! and communal stairwells, don't work for ASD kids with sensitivities to seemingly everything. and the need to have the washing machine on 24/7 with ainsley soiling. also we need to be on a bus route so we can access services, rather than require bus changes and over 2 hours travelling each way to get anywhere. On a positive note a taxi has been arranged, at least for first few weeks, for ainsley to attend college again in September, at the moment he is keen, he will be studying horticulture, but I have seen/heard it all before from him, so fully expecting September to roll around and him refuse to go. especially since the social worker and CAMHS have now told him its his choice! so I am counting down days until September, fingers crossed I can keep myself sane to then, and that ainsley returns to college.

relationships

well last few weeks have been an emotional roller coaster for me and the kids. I got involved with my best friend of 4 years. MISTAKE. but it was my first relationship for 10 years. it was beautiful whilst it lasted but has ended very badly. he couldn't cope with me developing a great relationship with his 17 year old daughter. I am really proud of my kids , they accepted relationship completely. in fact Ainsley, my PDA 17 year old, amazed me by pushing me to leave him with his sister at home for a weekend whilst I enjoyed myself! and, from the boy who refuses to do anything, I came home and tripped over him hovering the stairs! they haven't coped so well with my emotional crying since it finished but haven't reacted badly just walked away because they don't need to deal with it, let me wallow in self pity. several positives have come out of this period, I realise I can leave kids alone, they can support each other, not long term, or with any major tasks, eg, I had to have meals prepared etc, no dishwashing/clothes washing/ self washing was done whilst I was away, and no windows open, you can imagine the smell, but I feel I can leave them for a while. so a step in that direction is I have volunteered at local charity shop for two half days a week. I think a lot of letting go has to come from internally me as I am very protective of them! I have also come to realise how unhealthy their lives are where they isolate themselves in their rooms 24/7. I was told whilst I was away they only came down to kitchen didn't go in main room at all. so I have managed to convince Ainsley to try and return to college in September, we have a meeting this week. and I have applied for a support worker for Kathryn with the view to getting her into supported housing, she is not happy about this. for me I am about to start driving lessons. so a good few weeks, a while of heartbreak and now time to move on to pastures new.

Meltdown

for the first time in over 2 years we had a major meltdown last night, although thankfully it was over very quickly. it seemed to come out of nowhere, explode and then disappear. minus the casualty of the hoover and a bite inflicted on him by an overwrought dog! we had a long chat and anxiety has been building up for him over several weeks, in relation to various things, and finally last night his sister pushed him over the edge, still haven't got to the bottom of how she did it! all is peaceful now and we seem to have emerged with a new look towards what the future will hold. he is willing to reassess his hopes and dreams and we are going to move forward in a much more positive direction.

Meltdown

for the first time in over 2 years we had a major meltdown last night, although thankfully it was over very quickly. it seemed to come out of nowhere, explode and then disappear. minus the casualty of the hoover and a bite inflicted on him by an overwrought dog! we had a long chat and anxiety has been building up for him over several weeks, in relation to various things, and finally last night his sister pushed him over the edge, still haven't got to the bottom of how she did it! all is peaceful now and we seem to have emerged with a new look towards what the future will hold. he is willing to reassess his hopes and dreams and we are going to move forward in a much more positive direction.

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.

To move or not to move.

well I have been offered an exchange, from our 3 bedroom very spacious flat in a pretty village, to a 3 bed house in a large town, near all the services my kids and I could access. problem is this takes me further away from older son, and he needs me within spitting distance to keep him on an even keel, even if he won't admit it. if he can't touch base with me his behaviour gets more and more manic, and moving would be 30 miles and 2 hours on 3 buses away....and that's when buses turn up on time! the younger two just don't like change. my daughter is willing to consider as she recognises she needs to get out and join some activities with people similar to herself. whereas my youngest son has flipped at the thought of change. for me, a garden, somewhere for me to stress relieve, access to support services so I can have time off, but a smaller property, smaller room sizes. I don't know what to do. the professionals are all for it but that's probably because if I live nearer services they don't need the support/time/effort they have to commit to at moment, not that they do help at all the moment anyhow. so to move or not to move a decision I need to make soon

Whocaresformum

well I have decided again to try and keep a record of caring and being a mum. I am in a super stressed zone at the moment and don't know what the future holds. but who care for me....no one. I am sole carer for 3 of my 4 adult children. my 23 year old son, he lives nearby but has mental health issues. today I found out his nightmares were getting worse, his distress was getting on top of him and he was cracking up once again. there is no one I can turn to when I have to put 110% energy into caring for him, I just have to take it all, and more on board, from the ranting and raving when he needs a verbal punchbag up to the time of clearing up the tears and calming down when he fails in a suicide attempt. then there's my 21 year old daughter, she doesn't "do" people, she doesn't "do" bugs, she doesn't "do" life. she does do teddies, watching anime, lining her stuff up in rows, not chewing food, not liking sheets and bedding only soft clothes, not liking everyday smells, that make her vomit. finally my 16 year old who has an ideal of life is to stay in his room and not see another person other than me, for life. as long as he has his fleecy blankets, his inside out socks and his mushy microwave crap, and his PC, he is content, take him out of his comfort zone and he can't cope, flips or shuts down and loses bowel control. and yes its up to me to hold it all together.