Just about the worst day of my life
Discussion
boobles said:
Really sorry to hear this & can't be easy at all.
My nephew also has this & his tantrums can be awful to witness. He will almost certainly create a scene where ever & when ever he wants & there isn't alot you can do. He is 9yrs old at the moment & the signs are already there that things will only get far worse.
Good luck with everything in the future....
Thanks, and to you and your nephew and his family. It sounds like they are following the same path we`ve been treading. I wouldn`t wish autism and all it brings on my worst enemy. All the very best. My nephew also has this & his tantrums can be awful to witness. He will almost certainly create a scene where ever & when ever he wants & there isn't alot you can do. He is 9yrs old at the moment & the signs are already there that things will only get far worse.
Good luck with everything in the future....
What can any of us say at times like this? All our hearts go out to you even though many of us don’t know you personally & wish you & all your family the best. However, most of us would not have much of a clue what you’ve been going through for the past 12 years of ‘fighting’ – whoever you’ve been fighting; be it the autism, the ‘system’ or what.
I may have, perhaps, a slight insight in that I have a 26 year old son with CP who now lives in a home with 3 others who have learning difficulties & he’s as happy as can be & well care for 24 hours, 7 days a week. We parents do not get any younger & if we carry on ‘fighting’ too long there could well be another patient or two.
Take heart Mr H - & Mrs & Miss H of course too - from all these messages sending you good wishes, etc
I may have, perhaps, a slight insight in that I have a 26 year old son with CP who now lives in a home with 3 others who have learning difficulties & he’s as happy as can be & well care for 24 hours, 7 days a week. We parents do not get any younger & if we carry on ‘fighting’ too long there could well be another patient or two.
Take heart Mr H - & Mrs & Miss H of course too - from all these messages sending you good wishes, etc
BrabusMog said:
Nothing really to add other than I hope you get through this difficult time. Next time there is a spare ticket to UP from one of my mates you're welcome to have it.
Thanks BM, sounds like a plan, haven`t been for a while so count me in. Although the football at UP could make me even more depressed than I am now!! My thoughts are with you. I cant imagine where you start dealing with an issue of that magnitude. It certainly puts day to day issues into perspective. To have coped for 15 years I think is an amazing achievement and I hope it time you will come to see that you could have done no better.
I hope it works out and i'm sure it will.
Your son will get the help that he needs (there are better people than pretty much all parents at dealing with autism) and your whole family will have a great time when you are able to spend time together.
Also, your son will realise, from other kids where he is, how difficult it is to live with someone with autism because of their behaviour. And he will thank you and your wife when he is able to control his behaviour better than he can now.
Best of luck.
Your son will get the help that he needs (there are better people than pretty much all parents at dealing with autism) and your whole family will have a great time when you are able to spend time together.
Also, your son will realise, from other kids where he is, how difficult it is to live with someone with autism because of their behaviour. And he will thank you and your wife when he is able to control his behaviour better than he can now.
Best of luck.
Hell's teeth. Makes you think.
Just remember, no matter how crap things get, and how low your life appears to have sunk, at any one moment, there are millions of people miles worse off. That's what i try and remember if things aren't going well for any reason.
I used to feel sad that I had no shoes, until I met the bloke with no feet.
Just remember, no matter how crap things get, and how low your life appears to have sunk, at any one moment, there are millions of people miles worse off. That's what i try and remember if things aren't going well for any reason.
I used to feel sad that I had no shoes, until I met the bloke with no feet.
Thanks Russ, I hope you are OK. My problems pale into insignificance with what you went through. although in a way I do feel something akin to having been bereaved. Probably a better word would be robbed, robbed of my son`s and my family`s ability to lead anything like a normal life.
For me, a selfish bugger, watching sons of friends and colleagues grow up doing all the normal things my son cannot has been tough. Over the years we`ve had endless incidents of holidays, days out, family visits etc ruined by his autism. What should be happy normal family times invariably turn bad despite careful planning. I`d be at work dreading calls from home, dreading going home at times.
And then there`s the battles we`ve had to get a diagnosis, to get a statement, to get any respite, to get a place at a suitable school etc. Trying endless strategies to minimise the "challenging behaviour", god how I hate those 2 words now. The gradual ebbing away of support from the grandparents and extended family who are unable to cope so what little social life we had left has all but disappeared. Numerous incidents of damage to stuff, one memorable day he did £2000 of damage to Mrs Hs car by stoving in both quarterpanels with his head.
And then there is little Miss H67, 2 years older than J and a normal healthy child. Her life has been utterly dominated by her brothers autism. Amazingly despite all the above she has retained a strong bond with her brother and was deeply disturbed with what happened Monday.
Anyway, thanks to all who have posted here, its certainly helped me. We`ve got loads of meetings lined up this week to decide where we go from here.
H67
For me, a selfish bugger, watching sons of friends and colleagues grow up doing all the normal things my son cannot has been tough. Over the years we`ve had endless incidents of holidays, days out, family visits etc ruined by his autism. What should be happy normal family times invariably turn bad despite careful planning. I`d be at work dreading calls from home, dreading going home at times.
And then there`s the battles we`ve had to get a diagnosis, to get a statement, to get any respite, to get a place at a suitable school etc. Trying endless strategies to minimise the "challenging behaviour", god how I hate those 2 words now. The gradual ebbing away of support from the grandparents and extended family who are unable to cope so what little social life we had left has all but disappeared. Numerous incidents of damage to stuff, one memorable day he did £2000 of damage to Mrs Hs car by stoving in both quarterpanels with his head.
And then there is little Miss H67, 2 years older than J and a normal healthy child. Her life has been utterly dominated by her brothers autism. Amazingly despite all the above she has retained a strong bond with her brother and was deeply disturbed with what happened Monday.
Anyway, thanks to all who have posted here, its certainly helped me. We`ve got loads of meetings lined up this week to decide where we go from here.
H67
Hammer67 said:
Thanks Russ, I hope you are OK. My problems pale into insignificance with what you went through. although in a way I do feel something akin to having been bereaved. Probably a better word would be robbed, robbed of my son`s and my family`s ability to lead anything like a normal life.
For me, a selfish bugger, watching sons of friends and colleagues grow up doing all the normal things my son cannot has been tough. Over the years we`ve had endless incidents of holidays, days out, family visits etc ruined by his autism. What should be happy normal family times invariably turn bad despite careful planning. I`d be at work dreading calls from home, dreading going home at times.
And then there`s the battles we`ve had to get a diagnosis, to get a statement, to get any respite, to get a place at a suitable school etc. Trying endless strategies to minimise the "challenging behaviour", god how I hate those 2 words now. The gradual ebbing away of support from the grandparents and extended family who are unable to cope so what little social life we had left has all but disappeared. Numerous incidents of damage to stuff, one memorable day he did £2000 of damage to Mrs Hs car by stoving in both quarterpanels with his head.
And then there is little Miss H67, 2 years older than J and a normal healthy child. Her life has been utterly dominated by her brothers autism. Amazingly despite all the above she has retained a strong bond with her brother and was deeply disturbed with what happened Monday.
Anyway, thanks to all who have posted here, its certainly helped me. We`ve got loads of meetings lined up this week to decide where we go from here.
H67
H67 - totally empathise with you - doesn't help to say been there got the T shirt but at least you know your not alone or unique with the burden and others have had exactly the same experiences. You've done the best by the whole family. We're similar though boy (man really) only fitfully has the extreme violence my wife just can manage/control - totally feel for you with the disrupted outings and trips other take for granted. For me, a selfish bugger, watching sons of friends and colleagues grow up doing all the normal things my son cannot has been tough. Over the years we`ve had endless incidents of holidays, days out, family visits etc ruined by his autism. What should be happy normal family times invariably turn bad despite careful planning. I`d be at work dreading calls from home, dreading going home at times.
And then there`s the battles we`ve had to get a diagnosis, to get a statement, to get any respite, to get a place at a suitable school etc. Trying endless strategies to minimise the "challenging behaviour", god how I hate those 2 words now. The gradual ebbing away of support from the grandparents and extended family who are unable to cope so what little social life we had left has all but disappeared. Numerous incidents of damage to stuff, one memorable day he did £2000 of damage to Mrs Hs car by stoving in both quarterpanels with his head.
And then there is little Miss H67, 2 years older than J and a normal healthy child. Her life has been utterly dominated by her brothers autism. Amazingly despite all the above she has retained a strong bond with her brother and was deeply disturbed with what happened Monday.
Anyway, thanks to all who have posted here, its certainly helped me. We`ve got loads of meetings lined up this week to decide where we go from here.
H67
Keep strong and support the others.
Sounds horrific, I'm so so sorry that you've all had such a terrible time. I know a few families with young people who have/display really bad 'challenging' (know what you mean with that phrase) behaviour - it seems like current systems really don't support well enough. It's hard to get help, if you do get help it's too little, too late and too limited in what it can do.
What would you like for your lad at this point? Begin transition to adulthood with a small-group living situation? Boarding school over the next few years? Back home with a helluva lot more support of all sorts? Whatever happens, remember that you also need and deserve support - you, Mrs and Miss H have been through an immensely traumatic experience, you'll all need time yourselves to recover from this, and depending on how you all cope, might be worth considering some sort of counselling.
My best friend's little boy has autism as well and although able to communicate relatively well with words he gets totally lost in his emotions - if he gets angry or frustrated it's as if he doesn't know what to do with it, so it snowballs. The little dude is only 7 and there have already been some fairly heavy-duty interventions to try and keep him and his sisters (both also disabled, one also on the autistic spectrum and one with a coincidental totally unrelated condition) safe at home. I've seen first-hand that love and dedication can't prevent or solve problems caused by bad luck and poor support - but it's somewhat coming back from the brink now that they've finally got a formal diagnosis and some (still not enough) decent help at home.
All the very best to all 4 of you.
Becca
What would you like for your lad at this point? Begin transition to adulthood with a small-group living situation? Boarding school over the next few years? Back home with a helluva lot more support of all sorts? Whatever happens, remember that you also need and deserve support - you, Mrs and Miss H have been through an immensely traumatic experience, you'll all need time yourselves to recover from this, and depending on how you all cope, might be worth considering some sort of counselling.
My best friend's little boy has autism as well and although able to communicate relatively well with words he gets totally lost in his emotions - if he gets angry or frustrated it's as if he doesn't know what to do with it, so it snowballs. The little dude is only 7 and there have already been some fairly heavy-duty interventions to try and keep him and his sisters (both also disabled, one also on the autistic spectrum and one with a coincidental totally unrelated condition) safe at home. I've seen first-hand that love and dedication can't prevent or solve problems caused by bad luck and poor support - but it's somewhat coming back from the brink now that they've finally got a formal diagnosis and some (still not enough) decent help at home.
All the very best to all 4 of you.
Becca
i feel for you and i feel i am similar to your son and i see the effect on my mother everyday. my autism though did have its advantages in school as i became pretty popular after i lost it completely and put the most notorious, knife carrying school bully in hospital with nothing more than my bare hands, which led to me making a lot of friends and seriously helping me build social bonds which i have severe difficulty with. i almost got dragged through the care system but they knew that would be futile i can build a complex plan in my head and would probably manage to escape and disappear very easily. thankfully as i have grown older i can control my anger much more easily, and i no longer have violent outbursts for menial reasons although if i am provoked enough someone will probably end up in hospital. thankfully though that hasn't happened yet and i do hope for my own sake that it never does.
i am not powerfully built, in fact i was the skinniest person in the class and the bully got quite a shock when i finally snapped from the constant stream of abuse, name calling and t
t slapping from him and stoved his face in
i am not powerfully built, in fact i was the skinniest person in the class and the bully got quite a shock when i finally snapped from the constant stream of abuse, name calling and t
t slapping from him and stoved his face inHi Rowan, thanks for posting and good for you with the school bully. Interesting to read your thoughts and experiences as this is what my son is unable to express, either in speech or in text. If only he could, we`d be able to do so much more for him.
If you ever find yourself in deepest Kent,shout and you`ll be more than welcome.
If you ever find yourself in deepest Kent,shout and you`ll be more than welcome.
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