Just about the worst day of my life
Discussion
Don`t know where to start, have just returned from putting my 15yo autistic son into emergency social services care. My family is in total meltdown, Mrs H67 and little Miss H67 are completely shot away.
Today I`ve been attacked by my own flesh and blood, watched him rage like a wild animal, seen him head butt his way through walls,I`ve had police, paramedics, social workers, carers, doctors crawling all over the house.
I`ve never felt so low, sat here crying like a baby, totally shattered and numb.
Autism ~ a short word hiding a monster. A monster I`ve been fighting for 12 years,well,today it has finally beaten me.
Today I`ve been attacked by my own flesh and blood, watched him rage like a wild animal, seen him head butt his way through walls,I`ve had police, paramedics, social workers, carers, doctors crawling all over the house.
I`ve never felt so low, sat here crying like a baby, totally shattered and numb.
Autism ~ a short word hiding a monster. A monster I`ve been fighting for 12 years,well,today it has finally beaten me.
Thanks guys. The last couple of weeks has been so difficult, watching your own son self destruct and taking us with him. I never thought I`d see the day when he`d be violent towards me and his mum. The house, not that I really care, is wrecked ~ holes in walls, smashed doors, mirrors, flat screens etc.
Mrs H is falling apart and little Miss H is virtually unable to speak. I`m just numb and beaten.
Mrs H is falling apart and little Miss H is virtually unable to speak. I`m just numb and beaten.
Thanks sjc and all above for your kind words and also for the harsh but true stuff.
We`ve probably known for some years this day would arrive and we`d reach the end of our ability to manage and cope. Trouble is you never stop hoping and praying it won`t. The way it happened will haunt me.
The real hero is Mrs H, many times over the years when I`ve shied away from the situation,she`s never wavered, never lost her fierce all encompassing love for our son. Which of course made what happened on Monday so tough for her. She even got a job working with autistic children and helping parents with newly diagnosed children.
We`ve probably known for some years this day would arrive and we`d reach the end of our ability to manage and cope. Trouble is you never stop hoping and praying it won`t. The way it happened will haunt me.
The real hero is Mrs H, many times over the years when I`ve shied away from the situation,she`s never wavered, never lost her fierce all encompassing love for our son. Which of course made what happened on Monday so tough for her. She even got a job working with autistic children and helping parents with newly diagnosed children.
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....
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!! 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
Hi 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.
Well, things have moved on since Jan. J spent a week in care and coped ok with no major incidents. Unfortunately upon return home and return to school things haven`t worked out.
One morning he arrived at school, got out of the car, ran towards his teacher and head butted him in the ribs, this coupled with more incidents which resulted in trips to A&E and the school have cried enough. This is the only school he`s ever attended and is a special school for disabled children. Currently he is out of school, Mrs H has taken indefinite leave from her job to look after him with help from foster carers.
Monday is D-Day as our case is being heard by an education panel who will decide upon another school. We have found a couple of autism specific schools but this would mean a residential arrangement. Trouble is, of course, funding ~ these places cost thousands of pounds per week.
Fingers crossed we get a result. Here`s a pic of J.
One morning he arrived at school, got out of the car, ran towards his teacher and head butted him in the ribs, this coupled with more incidents which resulted in trips to A&E and the school have cried enough. This is the only school he`s ever attended and is a special school for disabled children. Currently he is out of school, Mrs H has taken indefinite leave from her job to look after him with help from foster carers.
Monday is D-Day as our case is being heard by an education panel who will decide upon another school. We have found a couple of autism specific schools but this would mean a residential arrangement. Trouble is, of course, funding ~ these places cost thousands of pounds per week.
Fingers crossed we get a result. Here`s a pic of J.
Update time again.
The battle for a new school of our choice is over and J starts in Sept on a 38 week, term time residential at an autism specific facility an hours drive from home. When I say "our choice" we were given 2 to choose between. How did we choose? gut instinct really.
On the face of it we`ve got a result but despite everything I just can`t shake off this damn feeling of selling out,and quite how Mrs H will cope with handing J over on Sept 14 I can`t imagine.
Once over that hurdle, this has to work for us and J. It just has to, nowhere left to run to, nowhere left to hide. If this isn`t the answer there isn`t one.
If you`ve got this far, thanks.
The battle for a new school of our choice is over and J starts in Sept on a 38 week, term time residential at an autism specific facility an hours drive from home. When I say "our choice" we were given 2 to choose between. How did we choose? gut instinct really.
On the face of it we`ve got a result but despite everything I just can`t shake off this damn feeling of selling out,and quite how Mrs H will cope with handing J over on Sept 14 I can`t imagine.
Once over that hurdle, this has to work for us and J. It just has to, nowhere left to run to, nowhere left to hide. If this isn`t the answer there isn`t one.
If you`ve got this far, thanks.
RDMcG said:
My son was not autistic but had very serious behavioural problems, and on the advice of his counsellor we enrolled him in a small boarding school that had a highly supportive program for kids like him. It was the best thing that ever happened to him , and now, at the age of 29, he looks back on it as a pivotal time in his life, and he remembers it with great affection.
Like you , I felt enormous guilt, and the day I left him at the school was crushingly sad - I also felt like I had sold out. He looked accusingly at me as I left. Yet, as time went by, he adapted and has become a delightful and functioning adult with whom I have the best relationship. The guilt feeling is just inevitable, but I feel that you are doing the right thing for all of you, and hopefully the result will help him greatly to deal with his tough challenges in life. I wish you the very best at this tough time.
Thanks RD, wise and uplifting words. I know we are doing the "right" thing ~ for me, for Mrs H, for Little Miss H and above all for J himself. The 3 of us left at home will get proper respite from the carnage and for the first time in more than a decade we can attempt to live what most people would call a normal life. J will be amongst specialists and fellow sufferers, he won`t stand out as "unusual" and will have the chance to be whatever his potential allows him to be.Like you , I felt enormous guilt, and the day I left him at the school was crushingly sad - I also felt like I had sold out. He looked accusingly at me as I left. Yet, as time went by, he adapted and has become a delightful and functioning adult with whom I have the best relationship. The guilt feeling is just inevitable, but I feel that you are doing the right thing for all of you, and hopefully the result will help him greatly to deal with his tough challenges in life. I wish you the very best at this tough time.
Not having him home will be both unbearable and a relief at the same time. J at home is a noisy, messy, chaotic mix of pain and pleasure that has become the norm for us. With him gone it will be very different.
We`ve wanted this for years, now we`ve got it I`ve got this horrible feeling of failure. Can`t seem to shake it off and whatever I feel Mrs H gets it tenfold. Sept 14 can`t come soon enough but hopefully it`ll never arrive.
gaunty said:
Hello Mate
I know I have never spoken to you before but my job is to support young adults with Autism, aspergers and Adhd
If you need any information or want a chat please Pm me and i will try and answer any questions you have.
Cheers James
Thanks James, very kind of you. I may well take you up on that at some point. And fair play to you for doing what you do. H67I know I have never spoken to you before but my job is to support young adults with Autism, aspergers and Adhd
If you need any information or want a chat please Pm me and i will try and answer any questions you have.
Cheers James
Well, today was the day. J is safely resident at his new school. Delivering him there was heart rending and I`ll never forget the look he gave me as we drove off without him. Apart from pics/video by email we have 6 weeks before we see him again. (J doesn`t understand telephones).
Mrs H is very quiet and tearful but got through today better than I expected so that`s good.
To fill the huge hole in our lives we`ve taken a leap into the unknown and bought a franchise.
H67.
Mrs H is very quiet and tearful but got through today better than I expected so that`s good.
To fill the huge hole in our lives we`ve taken a leap into the unknown and bought a franchise.
H67.
Edited by Hammer67 on Wednesday 1st December 22:48
Update time. Blimey how time flies.
Well, J's time at his autism specific school (Bradstow in Broadstairs)comes to an end this July. He's 19 now and the placement has worked out about as well as anyone could have wished for. He's thrived and in so many ways has progressed hugely. Not by any "normal" measure obviously but insofar as his autism allows, he's a changed lad. Much calmer, much more tolerant of things that he finds stressful, much more communicative and meltdowns are now just a painful memory.
Can't speak highly enough of Bradstow and the staff there, wonderful, committed people who do a job I couldn't begin to even contemplate.
What now? Well, Bradstow pointed us in the direction of St Piers in Lingfield which is a college for young adults suffering from a variety of conditions, mainly epilepsy and autism. We paid them a visit, were very, very impressed with the people and the facilities and immediately applied for a place. J spent 2 days there having an in depth assessment for suitability and was offered a place.
A short, sharp battle for funding was won and he starts there in September, potentially for up to 4 years until he's 23. Brilliant news and a huge weight off our minds, a few more years for us all to progress and plan for his life as an adult when he will, we hope, be able to live peacefully at home with his family.
In other news, have been watching the first 2 episodes of The A Word on the Beeb, and finding it hard to watch, a virtual mirror image of what we went through all those years ago. Hopefully it will raise awareness of autism and similar conditions, and, perhaps more importantly, what the families of those affected go through.
If anyone is still reading at this point, Thanks.
Well, J's time at his autism specific school (Bradstow in Broadstairs)comes to an end this July. He's 19 now and the placement has worked out about as well as anyone could have wished for. He's thrived and in so many ways has progressed hugely. Not by any "normal" measure obviously but insofar as his autism allows, he's a changed lad. Much calmer, much more tolerant of things that he finds stressful, much more communicative and meltdowns are now just a painful memory.
Can't speak highly enough of Bradstow and the staff there, wonderful, committed people who do a job I couldn't begin to even contemplate.
What now? Well, Bradstow pointed us in the direction of St Piers in Lingfield which is a college for young adults suffering from a variety of conditions, mainly epilepsy and autism. We paid them a visit, were very, very impressed with the people and the facilities and immediately applied for a place. J spent 2 days there having an in depth assessment for suitability and was offered a place.
A short, sharp battle for funding was won and he starts there in September, potentially for up to 4 years until he's 23. Brilliant news and a huge weight off our minds, a few more years for us all to progress and plan for his life as an adult when he will, we hope, be able to live peacefully at home with his family.
In other news, have been watching the first 2 episodes of The A Word on the Beeb, and finding it hard to watch, a virtual mirror image of what we went through all those years ago. Hopefully it will raise awareness of autism and similar conditions, and, perhaps more importantly, what the families of those affected go through.
If anyone is still reading at this point, Thanks.
FlyingMeeces said:
What a nice update - thankyou lots for coming back to provide it!
I will speculate now that after 4 years at college, J may well want and be ready for living in his own place, with support - might even find himself a housemate from college, that's not unusual and can work quite neatly in terms of shared support when people have compatible needs. Just sort of floating that as an idea - might be nice having grownup offspring nearby, visitable but living in his own space.
Well, that's possible of course but J is nowhere near a level where he could operate independently or anywhere close to it. He requires full time care and supervision. He's 19 with a mental age of, probly a 6 or 7 year old. Mrs H67 has deep seated concerns about his vulnerability and wants him home once college is done. We have organized our lives ready for when that day arrives whether it be tomorrow or in 3 or 4 years time. We run our business from home and have built a large log cabin in the garden so J will have his own space. Thanks to you and everyone else who has commented or read this thread, it helps greatly knowing people care and encourage us. H67I will speculate now that after 4 years at college, J may well want and be ready for living in his own place, with support - might even find himself a housemate from college, that's not unusual and can work quite neatly in terms of shared support when people have compatible needs. Just sort of floating that as an idea - might be nice having grownup offspring nearby, visitable but living in his own space.
Silver993tt said:
What's his diet like? He should be avoiding all wheat based and dairy products and be on a 100% gluten free diet. If not this should be tried for a period of at least 3 months.
Been there, was a few years ago now but had no effect whatsoever. J eats anything and everything that is put in front of him. By his own choice he drinks water, he loves coke but only gets it as an occasional treat. Never drinks tea or coffee or any alcohol. As a baby/toddler his diet was very limited, marmite on toast mainly but now he eats very well, and much more healthily than your average 19yo.
He's never suffered from any sort of digestion or bowel problems, his weight is fine if slightly under what it might be and apart from some eczma type dry skin issues he is very healthy.
Refresh my memory, what makes you say "this should be tried"? What would you expect to change? As I say it's been a while and can't quite recall the reasons for going gluten and dairy free.
Update time again.
J's first term at St Piers has just finished and, thankfully, been just fine. His placement is weekly so we've been back and forth with him every weekend. A 140 mile round trip to collect him on Friday and the same again to take him back on Sunday.
We've organised our business so that Friday is a day for me and Mrs H67 to unwind and just be a couple en route to collecting J from Lingfield. We've joined the National Trust and have visited a few places near to the college ~ Hever Castle, Bewl Water and Chartwell so far. Sometimes we take the dogs, sometimes we don't. Wonderful, lazy days just wandering around doing nowt, a coffee in a cafe, a beer in a pub, fish and chips, sitting on a bench by a lake. Simple stuff that we should have made time for all through our journey with J but just never managed it somehow.
Mrs H67 was dreading these trips but now it's the highlight of our week. Strange how things turn out.
H67.
J's first term at St Piers has just finished and, thankfully, been just fine. His placement is weekly so we've been back and forth with him every weekend. A 140 mile round trip to collect him on Friday and the same again to take him back on Sunday.
We've organised our business so that Friday is a day for me and Mrs H67 to unwind and just be a couple en route to collecting J from Lingfield. We've joined the National Trust and have visited a few places near to the college ~ Hever Castle, Bewl Water and Chartwell so far. Sometimes we take the dogs, sometimes we don't. Wonderful, lazy days just wandering around doing nowt, a coffee in a cafe, a beer in a pub, fish and chips, sitting on a bench by a lake. Simple stuff that we should have made time for all through our journey with J but just never managed it somehow.
Mrs H67 was dreading these trips but now it's the highlight of our week. Strange how things turn out.
H67.
duffy78 said:
glad this worked out the way it did. Really good news.
We've just recently received a diagnosis for my youngest son after 20months wrangling with camhs. 7 years old with ASD ADHD and SPD, albeit high functioning.
Meltdowns getting rarer as he gets older but more violent. My wife is dreading the day that he is too big to restrain (sounds worse than it is, he responds really well to being cuddled firmly)
As it is getting punched in the face from him is painful!!
Sorry to hear that my friend. I can offer nothing that will be much help. Every case is different, you will feel that you are the first family who ever had this happen. We certainly did. I desperately hope your journey is as smooth and stress free as it possibly can be.We've just recently received a diagnosis for my youngest son after 20months wrangling with camhs. 7 years old with ASD ADHD and SPD, albeit high functioning.
Meltdowns getting rarer as he gets older but more violent. My wife is dreading the day that he is too big to restrain (sounds worse than it is, he responds really well to being cuddled firmly)
As it is getting punched in the face from him is painful!!
One big mistake we made was focussing too much on J and his autism. Too many other parts of our life, our marriage, our daughter, our social life, my sporting career, to name but a few, got forgotten. J's autism will always be there and we spent too many, irreplaceable years trying to pull up trees in our efforts for him. Getting the balance right is a tough gig, we didn't manage it and my advice to you would be, be a little bit selfish, watch your wife very carefully for distress signals and act if you see any. I look back now and can pinpoint a couple of times when I'm pretty sure Mrs H was on the brink. Good luck.
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