Julieanne

I put Jay to bed at 8pm...he always has his tweenies/bob builder/fireman sam videos on and he plays around and then falls asleep around 9.30pm to midnight (lol) so in this time that he is in bed, im clearing up the destruction and generally getting chores done that i cant do when he is awake as he constantly trashes my house. so by the time i have done everything & had the first hot cup of tea of the evening, i fall into bed around 12.30am...i have to read for a few minutes as it relaxes me( and i want just a tiny bit of ''me'' time where im not doing things i have too !!) then i must have dropped off around 1am...jay woke at 1.45am this morning and i have been up with him since.... he will not settle once in his room, he shouts, screams, demands to get in with me, so he does, but i have no hope of him settling back to dreamland. ( he is 8 but has mental age of around 3...he is on lower end of the Autistic spectrum, so doesnt understand everything - he also gets really pinchy and starts hitting when he is awake like this) then he starts demanding at the top of his voice that he wants this & that etc etc, so i get up as he is already on his way down the stairs( and cant be left alone for a second) and shouting about going in the garden with his ''orange ball'' so i explain that he cant( i tell him its raining!) then he wakes up my eldest son as jay keeps creeping back upstairs demanding that his brother gets up, so in the end i have to lock my eldest son in his room just so the poor little guy can sleep. he then demands food, more toys, sings and shouts at top of his voice and once again starts trashing my house...im just so exhausted and i have to keep going now for another 14 hours.... we tried jay on melatonin but this made him sleepy only for a short while we had same problem...he just seems to survive on very little sleep, but then will scream so loudly if we ever do try to keep him in his room, he would wake the neighbours and i dont fancy falling out with them, i have enough to deal with!!! just wondered if i was alone...does anyone else have this where their child once awake demands to be up like its 9am and in actual fact it is really 2am??? its nights like i have just ad where i feel so damn lonely and like the rest of the world is asleep & happy thanks for any replies in advance Julie x

it made me well up reading all these posts, you end up feeling like your completely on your own, yet i read these posts and know that im not! when you said bikergal about your daughter giving you a huge grin, i just smiled so wide, that is lovely, she sounds adorable as all the children we have... but as others have said there is a void, something missing and like you bikergal, my son relies heavily on me, i wonder if im ever going to have a life again. it has stopped...dead...im his mum now and that as selfish as it may sound to others, for me, incredibly hard. I too have had friends that i ''thought'' understood but when it came to the crunch they evidently just cant or choose not too as it is easier! when i see parents with mainstream children being told off for mundane things, i look at them and think '' you have it sooooo easy...you will have your children leave home and live their life to the fullest, you can have friends that dont look at you or your children differently, you wont ever feel the loneliness parents like us feel'' I dont mean that to come across as bitter, but i think you may know what i mean! I have this empty feeling that i dont think will ever go away, and i wonder if this is still part of the grief that i feel. I can look at other families and they do ''normal'' things, that makes me feel lonely...always gets to me.. :tearful: hugs to everyone who feels this way xxx

I have increasingly been feeling more lonely as time goes on, my son was diagnosed in may 2003, he is now 8 years old, and i dont have people around me that understand the all night with no sleep, shouting outbursts, trying to escape constantly, crying for no apparent reason, hitting, biting, pinching, etc etc i have been told to ''simply get him adopted if i cant cope with it'' and to me that really is not a answer, i could never do that. that comment really upset me. then i get ''well you have been dealt this card you have to get on with it'' im like '' you think i dont know that!!'' grrrrrrrrrrrrr! when all you want is someone to talk too that can understand what it is you live with on a daily basis and you love your little child to peices but you just need to vent soemtimes....these people seem to be a rarity! does anyone else feel isolated? Julie xx

hello all...I wondered if when you have been asked over and over again by family/friends to attend ''occassions'' and you find yourself explaining over & over that your child cannot deal with such things, do they understand why or do they think that as parents we are making it out to be worse than it is?? i have family like this & they keep on and on saying ''i will help look after him'' and silly comments like ''you can relax, we are all there'' blah blah yeah right!!!!!!!! yet when we have taken our son to such things he kicks off big style as he hates it and they all look at you as your desperately trying to deal with this child that is hitting everyone, kicking, screaming etc etc... yet they continue to ask you, i was accused of being anti social as i have refused to go...then i get '' well you simply cant expect any one else to understand what your going through julie.... you have to just get on with it and make the effort'' just wondered if i was alone in this!! Julie xxx

Hi, just wondered if any of your children sing whilst having a meltdown & hysterically crying? i did wonder if it was some sort of comfort to them..but found it rather surreal that my son could be breaking his little heart and then singing at same time at top of his voice anybody know why? xx

I have a agency that looks after my son, a lady has him for 5 hours per week in school holidays. however she took him to a ball pit, slide, indoor play centres and he ended up flooding the ladies 3 times...as he has a obsession with taps! she said that the boss of the centre came to her after he had done it 3times and how was she to know if the boss hadnt come to her before...my question was...why wasnt she in there with him, going down slides etc and watching him???? my son is fast and you cant turn your back for a second...but when im out i do not take my eyes of him! he could have got out & ran into the road, he could have slipped and split his head open in the ladies by the flooding or another child could have done that and then i would be sued... i was reassured that this wouldnt happen again so she came about 10 mins ago to take him out till 4pm, i was polite and she didnt look my hubby or i in the eye, and was rather rude i felt...im worrying now that this will affect the care she gives my son whilst out...am i worrying for no reason??? i felt i had to say something....did i do the right thing?

Literally left my son alone for a second to get dirty laundry from upstairs, and i then started to make beds, all time calling to jay to make sure where he is - as you cant leave him alone for a sec...then i smell toast, so i call down saying ''jay, mummy will make toast - hang on!!'' then i come down to smoke and my toaster has flames coming out of it that nearly caught my blind on fire... he was sat happily absolutely oblivious to what was going on around him....i panic get flames out by blowing them and then the smoke alarms start sending jay into the garden as he hates the noise and im just thankful of course he is safe...felt like crying....i thought i should not have left him even for a few minutes, but i do have to get things done - feel such a awful mum however i did explain as best i can with him as he is limited that we dont touch hot things and he just looks at me as though im daft as a brush... what a ###### morning...and it isnt even lunchtime yet....day 1 of the half term.. .btw i threw the toaster out as i didnt feel it was safe to have one, so i have to toast bread in grill when he isnt looking as he is one of those children that always watch & observe then try...we already have to lock kitchen door at night as he gets a pan and pours oil on it with pringles trying to cook... just wondered if any other children were as adventrous as this??

I have had ''oh dont worry he will grow out of it, it is just a phase Julie'' some people!!!!!!!!!!!!!

Is there no adult disability team in your area hun? i have been told that once Jay leaves childrens disability team at age of 19 he gets automatically transferred over.... I hope this helps... <'> >< <'>

I am keeping my fingers crossed hun...good luck!! <'>

My hubby was downloading some bits & he came across Autism The Musical...we downloaded it and it is about a woman who knows alot of autistic children & they do a musical all about autism. The parents do interviews & i was watching relating to what they were saying about tantrums etc.... the children related well to the interaction with music and i just was thinking''awwwwww'' all the way through!! It is incredibly sweet & a lovely insight into these wonderful children....for anyone who hasnt seen it, i recommend it

awwww bless his heart!!! im glad you found it, i told my hubby what your son said and he too smiled...its true the things they say !! my son is going through a huge fireman sam obsession right now, he runs round our 13ft trampoline to the beat of the theme tune and sings it constantly we get funny looks from passers by (at back of our garden there is a lane) as he is nearly 8 now and has mind of a 3 year old, but ya know...what is normal? and why heck should our kids conform to what everyone elsethinks is ''normal''....i hate that word!! LOL your son sounds adorable <'>

we also used melatonin and we also thought it was pretty useless lol...we feel that it does help with Jay's sleep.. talk toyour paeditrician , it does have side effects, but as yet jay hasnt presented with any...more popular side effects are weight gain...but he runs around so darn much he never could put weight on we have found it to be a good thing so far..... it may help with your girls tantrums as it is meant to have a calming effect and to control aggression too.. good luck & let me know how you get on if you decide to take the plunge

sorry im new to this & getting replies mixed up and doing it twice

My son has a obsession ( well one of his obsesssions lol) is buses...he bangs them along wondowsills, floors, tables, anythng, it is like he enjoys the noise...it is very draining and it goes right through you!!! anyone else have a similar thing with their autistic child...it can make you feel so alone when your child is doing tnhis type of thing and it may sound odd but it is sooooo stresssful!!!!

My son Jay is on Risperidol 0.2ml once a day in evening...it does calm him & we have noticed a effect as in, he is not as aggressive. It also helps to calm him when he goes to bed as we were going through a phase of him not going to sleep till midnight...just banging his buses constantly on the floor which is very draining...bang...bang...bang.....all day & night!!!! and screaming, shouting, and just wanting this & that...up and down stairs like a yo yo...but thankfullyall that has calmed down Just wondered how many other parents used this medication in their autistic children and how they got on with it?

Hi well im not sure about this because i was 28 when i concieved with jay ( my autistic child) and hubby was 30...soim not sure what happened there lol...but personally i blame the MMR..... there may be some truth in it

hello , i am new here. i have a 7 year old boy ( nearly 8) with ASD....life can be hard at times, so im glad i found your site just wanted to introduce myself to you all....im Julieanne 36 years old & seperated....I live in UK.... hope to meet you all soon