I love my home, if only i could pick it up and move it near to support services it would be perfect. but since it looks like re-homing our family is an impossible thing for homechoice to allow us to achieve I , probably, foolishly, decided my living room needs decorating. so i have spent last two weeks stripping wallpaper, several layers of woodchip, off the living room walls. Now i understand what the woodchip was for, it was to hold the walls up! |I now find myself dealing with years of local authority slap dash patch and repair and in reality the place needs a complete overhaul. Now i can wall paper, fill holes and paint but i am not up to the work that needs doing. so now i have called in the Surveyor from the housing association, i can apparently, be charged to replace all the missing walls and skirting boards, things done by past tenants, i can't afford to pay for this so am hoping they may show some sympathy, if they do i will decorate nicely and have the room carpeted, removing the horrible laminate if they won't do anything i will slap cheap magnolia on the walls and keep trying to move. have to wait another week for visit, which was first requested May 1st but somehow got lost in their system, probably because they knew they would come out and find lots of work! anyway i am hoping i can proceed with the decorating whilst college is closed and i am at home with teen, although i really don't think he will be going back in September, so really want to get it done before we start the ESA nightmare for him.

going to try blogging again!

well the last year has been an emotional rollercoaster, as i am finding caring always is! We had a social worker, who inspired me to move, "you really need to be closer to services", "you need support for you grace", "the kids need to access autism support", all very true statements. Unfortunately home choice do not agree, so 18 months later, the social worker has waved goodbye, and we remain living in a , relatively isolated village, 25 miles away, 2 1/2 hours, each way, on a good day, on buses, and unable to access support. apparently autism isn't classed as a disability that allows you to get any priority to move! so now here we are, and my youngest has turned 18. i swing between petrified and an emotional wreck in tears, twice i have been through the ESA/IB/DLA to adult process with my two older kids, and i just don't have the energy to face it all again. and if i find that inner strength the drop in money from child disabled benefits is very scary. we currently get over £155 a week in child related benefits, we lose this and go onto assessment rate of £53 a week, then if he actually qualifies for support group ESA, and i am not convinced the system can be relied upon to make any logical decision, he will get £109 ish a week, and we will have to start paying rent and council tax as he is a non dependent, this adds up to over £20 a week. and where does it say as an adult your disability cost less than that as a child? and thats only if i can motivate myself to face the GP for a fit note and the phone lines to put in a claim. at moment jumping off a high bridge sometimes seems a preferable option. But what worries me now is what is their future. my daughter, 22, rarely goes out, and never without me, she has no interests outside the home, belongs to no support groups and gets no mental health /ASD help. all the services that offer and support are inaccessible 25 miles away. i am having driving lessons, BUT, with drop in money they are going to have to stop, anyway i will never be able to afford a car! my biggest fear, if we remain living here is that my 18 year old son will now turn into a blob, who never interacts with anyone outside the house, and rarely comes out of his room, how can this be a healthy future, but with the possibility of moving not a reality there is no choice. reading this i think i will give myself permission to cry, as with no future my and my childrens life stretches bleakly into the future into a vortex of no hope.

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.