Julieanne

Hey everyone, Just wondered if anyone feels the way that i do? I am totally exhausted and feeling really low as my son needs to be watched 24/7 and doesnt sleep until nearly midnight, and he goes to bed at 7 as he is 9yrs, and it is his routine, then we are up and down to him all night as he wants drinks, toilet, food, diff dvd etc. so the only break we are getting is when he is asleep, we are totally done in. It was the hardest 6 weeks of our lives. His behaviour has rocketted in aggression, pinching, anger and he has made me black & blue. We tried melotonin and it was good at getting him off to sleep but then he would wake at 1am and not go back! over summer holidays we got so desperate that we ended up putting him on Ritalin he has 5mg twice day but it isnt really calming him like it should, so i will talk to the paed and see if we can ''up'' the dose tommorow. Just at my wits end, i think that everyone else is sat about reading sunday papers and relaxing...i think what is that!? im losing hair through all stress, and i cant take much more... anyone else feel like this? Julieanne x

My son is 9 and we just moved to a bungalow with fields all around us , as he likes to escape and run off, which of course to him was a huge game...we have locks everywhere, and we all carry a lanyard with keys around our necks at all time...it really is like living in a prison rather than a home. He went to spend a night with his grandma, and she left the window open slightly, with the lock on, he managed to force the window open and escape.....he has amazing strength for his age ( 9yrs). It happened at 6am and he made his way up her lane to the busy main junction where a passer by found him in just jim jams, and laying in road who luckily wasnt a weirdo and he held her hand and said ''go to grandmas house'' and hr lead her back. the police were called by this lady who found him as she realized quickly he was low functioning autistic and my poor mum in law was in bits, she feels so guilty about it happening, but all we can do is take the maximum precautions, he is a real houdini and could get himself out of chains that boy!!! But thankfully he was fine, social services were involved and they seemed to think this sort of thing was common amongst autistic children. I have never been so scared in all my life, and what worries me is that what happens as he gets older? I have padlocks galore and i worry for the future. has anyone had anything like this with their child, and if so, did he repeat it? he just laughs and thinks it is great fun while all time we are having a heartattack I was scared social services would take him away with them thinking it was negligence, but they did understand, and it is hard when u make your fences higher than normal, locks everywhere, gates, window locks, every concievable thing and he still escapes, i just am so scared of what he may do next. Any advice? Thankyou Julieanne xx

I have been told that i can get Jay into a place where he can go and possibly after a period of time stay overnight. It is a place run by the local council and is part of his respite care. I currently get 12 hours a month family link, with a family that have known jay for a long time and he has built up a strong bond and we trust them completely. With this placement because he may stay overnight, he becomes in ''care of the local authorty''. I am not sure about this. And would like to know other peoples views on their experience with this and how they got on. Does anyone currently have this as respite care for their child? Thank in advance for any replys Julieanne x <'> >< <'>

I know exactly what you mean when you say you are grieving for the person your daughter would have been...I feel exactly same about my son. It is hard to watch other children doing the normal run of the mill things and knowing my son wont ever do them...it puts a lump in my throat. I love my son dearly, but i think as a parent of a severly mentally disabled child, it is something that will always stay with me, and im sure other parents can relate to that. thinking of you all <'> >< <'> >< <'> >< <'> >< <'>

<'> >< <'> >< <'> >< <'> >< <'> Thankyou so much for the replys, it means so much and it is nice im not alone!!

Hello Sally, thankyou for taking the time to reply. I had jay assessed and he is currently 9 years old in age but mentally no more than 21 months, i do appreciate what your saying, your right as in some things he seems to be ahead...yet others he is his ''mental'' age. It is so hard being a mother of a disabled child, and my husband and i have been told that jay may never leave home as he cannot do anything for himself, his learning difficulties are on such a great level. I will look on youtube for the video you mentioned thankyou for that It is nice to know i have support and there are others out there that can understand what we all go through, as i find alot of other people with mainstream children do not understand how hard this can be. <'> ><

Hello, I havent posted for a while, busy moving house which i am thankful to say that with jay went very well I have just been with my little nephew who is nearly 2 and still in nappies so mentally same as jay as jay is also in nappies still...and you cant but help feel a sense of loss..im not sure if i know how to explain it properly but it is kind of a ''smack in the face'' when u see a child that is 4 times younger then your own doing exactly same things, only my little nephew understands more and answers to things u ask him, with nodding of head etc, although my nephews speech isnt all there yet, i just felt like it brings it home to me more. i was wondering if anyone here feels or has felt this way and im close to tears at the moment, i guess i thought i had come to terms with jays disability and exactly what it means for rest of his life, as in always living with us etc...but i dont think i have Anyone relate to this? Thankyou for any replies in advance Julieanne <'>

I can so relate to the whole ''isolation'' thing...we have found that in the last 7 months that hubby's family are keeping their distance away from Jay. hubbys mum just doesnt offer to have him there anymore and she only sees him when we take him there. and one time back in summer, we were down there, hubs sister was there with her ''perfect'' family and jay went off on one as he always does..and she took herself off to do the ironing and looked a few times but hardly said anything...then when we left it was a look of ''thankgod for that, we can have peace now'' We dont go out either, we have been called anti social by family members, but they simply wont accpet that jay cant handle social situations, it is us locking ourselves away apparently. as for friends, when jay got diagnosed it took me around 18 months to come to terms with it, and even now im not sure i have...anyway she said to me one day when i got teary..''have him adopted if you dont like it'' i was horrified that wasnt at all what i was thinking and i thought omg! however when her daughter may have had to of worn glasses when she was 4, she creid before she took her to the opticians as she said she didnt want her daughter picked on and how horrible is it for child to wear glasses... well if all i had to worry about was whether my child was wearing glasses i would be a happy bunny...instead i have a severley disabled lower functioning spectrum child who will never leave home, but im not allowed to be upset! so yes i know all about isolation... hugs to all <'> >< <'> >< <'> >< love Julieanne xx

Thankyou for that, it made me cry...awwwwww !!!! hugs xxxx

I know even after nearly 9 years i have not fully and i dont think i ever will come to terms with jays autism/communication/learning difficulties. I have been having a bad morning and cant stop crying, im not always like this so im not sure why this day is any different to any other ?? I said to hubby, eldest will leave home, and yet youngest wont, and someone said to him that he knew a couple who have a 57 year old suatistic man living at home still with his parents that has a menatl age of 5..jay is like that he is around 3 years and the gap is widening by the month.. I dont want everyone to think im selfish but i cant do all things other people can do, like family meals out, family holidays, normal stuff and im going to be tied...i dont know if i can do this!? i dont like idea of residential, heard too many horror stories...and family dont understand, all i get is..''its the cards you were dealt with'' im like'' ya think'' ( like i dont know that already ugh!!! im just finding it all too much right now and even though i love my son to bits, i still have my ''days'' & i wondered if anyone else felt the same? hugs Julieanne xx

I just wondered if any of you can relate to this at all... I got a call from Jay's school yesterday saying he had to have special fitted shoes as he is a little more then pigeon toed, and they had gone ahead & ordered them....which i guess is ok, as he needs them and i am all for doing the right thing where my kids are concerned, but then why do i feel like crying? I did have a cry yesterday and im on brink now maybe i havent fully come to terms with his autism, his mental age of 3 ( yet he is nearly 9) and maybe i see this as yet something else, i know that mainstream children may have to wear these too, but i dont know i feel like its something else to deal with. they are called piedro shoes, they look fine, not that bothers me, but i guess what it is, you get your head round something then along comes something else, a bit like my eldest child having dyslexia, its something else to deal with. maybe im being silly, but i want to get a little bit of normality back in my life, and i try hard, with the obvious adjustments and i dont know why im blubbing!! does anyone understand what i mean? thanks Julieanne x

Hello Everyone, I wanted to ask you all something... I am due to do a shop to supermarket possibly saturday, but that means taking my son who has ASD with us...hubby doesnt want too, he says it is too stressful , he gets so angry with people staring and he feels he cant take all the nasty ''comments'' anymore. I however am a little bit stronger in dealing with it, and i feel that why shouldnt we take him, i can go when jay is at school but i feel why should i? if that makes sense, he has every right ot go to a supermarket if he wants too, he isnt a monster! lol But from the stressful side, my poor hubby gets so wound up all in defence of our little one, which i throughly understand. i am disabled myself i have nerological problems, use crutches to walk long distances, and i have degenerative discs in spine that cause me alot of pain so i cant go on my own i have to have hubby with me. hubby doesnt work at the moment as i cant always deal with jay due to the pain im in on a daily basis, so he is around in week to help me with household stuff and to be here to collect jay to and from school as i cant always drive due to the conditions i have. just wondered if anyone else had a partner that felt this way? i also feel mad at people with their ignorance but as i say i can deal with it better i think.. it is getting him down so much that he feels that he doesnt want to go out, can anyone else relate? thanks and hugs to all Julieanne x

Hello..just went on net and found the following films that may be of help to you Rainman....little man tate....whats eating gilbert grape....forrest gump...under the piano...i am sam...autism the musical...her name is sabine...i havent viewed all of these myself, but from the search i put it, i pressume they are what you are looking for. good luck! Julieanne xx

Having a rather hard time of things with Jay at the moment...he is shouting ALL the time..he cant seem to speak quietly, and is very random so like on saturday when we went to tesco's i had a member of staff say '' for gods sake '' and looked at me like i was a completely ###### parent with a unruly child i did complain about her and im in process of getting onto head office to make tesco stores ( at least) autistic friendly as us parents are under enough stress without feeling like we cant go out anywhere which is how myself and my hubby feel now...want to lock yourself away...ugh! and then today as i went shopping i had a customer mutter something and give me a awful look as jay was again shouting and i just lost it and said '' my son is disabled , he has autism OK?'' maybe not the best thing but i have had enough of ignorance... i then left the shop crying and not finishing my shopping and sobbed all way home..i get home and jay starts again...this goes on for hours...from 6am to midnight...all the time...i am at the end of my tether...social services are ###### here on isle of wight and i have had many dealings with them, promising me this and that but of course it never happens... but anyway i wanted to know if any of you have a autistic child that constantly shouts everything, every noise they make..and what coping strategys you may use...i have tried everything from fingers in ears...to saying with visual cues..''too loud/noisy'' he laughs and thinks it is a complete game... anyone relate or help please? thanks for listening and for any replies in advance Julieanne <'>

here is a <'> <'> <'> and i hope that your son gets the help and proper schooling he deserves