Just about the worst day of my life
Discussion
duffy78 said:
Thanks for your thoughts. siblings suffering, they are 10 and 6, boy and girl. Marriage suffering, crisis mode at the minute but we are muddling through
I can well imagine what you're all going through. Get help my friend, wherever you can find it. Try and get respite. That helps immensely even if its only for a day a week or even a few hours. Don't let it take over your family like we did. Make the tough decisions to give your other children and your wife priority. Christ that sounds heartless, but I wish I'd had the courage/leadership/guts to have done it. You're not alone bud, pm me if you want, I'll help if I can. bazza white said:
Great knees he's doing well. Hows the daughter getting along, how is the brother sister relationship.
Thanks. My daughter has just moved into a flat with her boyfriend in Folkestone. She's just turned 22 and is fiercely protective of her brother. Scarily so in fact. I'm hugely proud of her and how she hung in there during the tough times we went through. twoblacklines said:
I have autism. I have done what your son in the OP has done. I once broke my toe by putting my foot through a stained glass window, f
k that hurt, but you don't even realise at the time.
The only tips I have for you are...
1. Diet. Super important. I do keto when I am not eating junk food. Viscious circle for me that, the social problems the anxiety causes cause me to feel bad for myself then I binge. If I can get in the right mindset though, I would say 90% of my autism related problems go away by being on a ketogenic diet. This cuts out most of the problem foods in itself. I feel a lot calmer.
2. Mindfulness meditation. Takes a while to learn, has helped me TREMENDOUSLY. Now when I fly into a rage I can see and understand what I am doing slightly before I do it. Have managed to talk myself out of many of these. Do 20 mins a day twice a day, lie down on back for now.
3. Make sure he never becomes a recluse. 4 years ago I binned ALL my friends, having been sick of not fitting in or people not understanding me. This causes social anxiety, now I can't make friends because I am scared of everyone. I can't go to the cinema, sometimes I can only shop at Asda at 3am when no one else is there, I can't do a world of things because it triggers a rage, which I avoid.
4. Keep him off online dating sites, pof, tinder etc. This causes depression, the people on there almost sense you are different and I get a lot of abuse, people take out their stress on you. I don't know how they sense it but they do. I have also been banned from SO MANY forums because I rub people up the wrong way by just being "normal" atleast normal to me. Either picked on and banned for retaliation or just not being understood properly.
The good news is there are some advantages. If we want to do something we do it. There is a reason Einstein and similar were autists. Also, if we are in the right mindset, we can turn off our feelings. Meditation will help then. An example, I don't go to funerals because I can turn off my empathy to help me cope.
Just read some of the last page. My parents thought the best thing to do was to ship me off to boarding school for 5 years. Unsure if this was out of love or they just cba with me anymore. Either way it fkED ME UP for life really... I was isolated, bullied to the point of suicide, amazed I lasted that long. It was like prison movies, best way to describe it. Including the rape scenes but we won't go there....
Wrist hurting from typing now, might add more, good luck.
Very interesting post, thanks for taking the time. The fact that you are able to express your feelings and write this sets you apart from my lad who, sadly, is not. I strongly suspect much of what you say would resonate with my son if he had the capacity to tell us. k that hurt, but you don't even realise at the time.The only tips I have for you are...
1. Diet. Super important. I do keto when I am not eating junk food. Viscious circle for me that, the social problems the anxiety causes cause me to feel bad for myself then I binge. If I can get in the right mindset though, I would say 90% of my autism related problems go away by being on a ketogenic diet. This cuts out most of the problem foods in itself. I feel a lot calmer.
2. Mindfulness meditation. Takes a while to learn, has helped me TREMENDOUSLY. Now when I fly into a rage I can see and understand what I am doing slightly before I do it. Have managed to talk myself out of many of these. Do 20 mins a day twice a day, lie down on back for now.
3. Make sure he never becomes a recluse. 4 years ago I binned ALL my friends, having been sick of not fitting in or people not understanding me. This causes social anxiety, now I can't make friends because I am scared of everyone. I can't go to the cinema, sometimes I can only shop at Asda at 3am when no one else is there, I can't do a world of things because it triggers a rage, which I avoid.
4. Keep him off online dating sites, pof, tinder etc. This causes depression, the people on there almost sense you are different and I get a lot of abuse, people take out their stress on you. I don't know how they sense it but they do. I have also been banned from SO MANY forums because I rub people up the wrong way by just being "normal" atleast normal to me. Either picked on and banned for retaliation or just not being understood properly.
The good news is there are some advantages. If we want to do something we do it. There is a reason Einstein and similar were autists. Also, if we are in the right mindset, we can turn off our feelings. Meditation will help then. An example, I don't go to funerals because I can turn off my empathy to help me cope.
Just read some of the last page. My parents thought the best thing to do was to ship me off to boarding school for 5 years. Unsure if this was out of love or they just cba with me anymore. Either way it f
kED ME UP for life really... I was isolated, bullied to the point of suicide, amazed I lasted that long. It was like prison movies, best way to describe it. Including the rape scenes but we won't go there....Wrist hurting from typing now, might add more, good luck.
Edited by twoblacklines on Wednesday 2nd November 00:27
Edited by twoblacklines on Wednesday 2nd November 00:30
All the best my friend, what you've been through sounds horrific.
^^^^ Thanks for asking.
Well, very much up and down.
My post in Dec 17 related to the failure of J`s final educational placement with 18 months left to run.
This was caused by a (very carefully chosen and highly rated) specialist establishment making some very basic and frankly stupid mistakes, which led to me turning up and pulling J, severely traumatised, out.
J was 21 at that point and his time in education was at an end, which leads us into the world of adult services.
In the year since, with J back home we have had his long term respite placement fail, in house support fail, external day care fail leaving us with zero support.
By fail I mean specialist autism trained care staff exiting stage left and not returning. All of them, every single one.
In March Mrs H had a health scare, one that could have been very serious indeed, but thankfully turned out ok and she's now fine. This episode convinced Mrs H that our domestic situation with J is unsustainable and not fair on any of us, J included.
So the time has come ~ a permanent adult residential placement, and us, to a certain extent, relinquishing control over J`s welfare.
We have a placement lined up and approved. We are currently going through a 6 month transitional programme preparing for J to move out in a couple of months time.
The difference now is, in theory, any future failures won't lead to J coming home.
How Mrs H will deal with that, if it happens, remains to be seen.
Up until now, the 2 of us have been united in the fight, but I don't think I've got enough left in me to return to the situation we have endured throughout 2018. I suspect any future placement failures could lead to a fundamental difference of opinion between us. Where that would lead who knows?
All this, to anyone not steeped in the reality of autism, probably makes me sound like a melodramatic, selfish, uncaring bd.
I'm really not, but after 20 years of it, I'm done.
Well, very much up and down.
My post in Dec 17 related to the failure of J`s final educational placement with 18 months left to run.
This was caused by a (very carefully chosen and highly rated) specialist establishment making some very basic and frankly stupid mistakes, which led to me turning up and pulling J, severely traumatised, out.
J was 21 at that point and his time in education was at an end, which leads us into the world of adult services.
In the year since, with J back home we have had his long term respite placement fail, in house support fail, external day care fail leaving us with zero support.
By fail I mean specialist autism trained care staff exiting stage left and not returning. All of them, every single one.
In March Mrs H had a health scare, one that could have been very serious indeed, but thankfully turned out ok and she's now fine. This episode convinced Mrs H that our domestic situation with J is unsustainable and not fair on any of us, J included.
So the time has come ~ a permanent adult residential placement, and us, to a certain extent, relinquishing control over J`s welfare.
We have a placement lined up and approved. We are currently going through a 6 month transitional programme preparing for J to move out in a couple of months time.
The difference now is, in theory, any future failures won't lead to J coming home.
How Mrs H will deal with that, if it happens, remains to be seen.
Up until now, the 2 of us have been united in the fight, but I don't think I've got enough left in me to return to the situation we have endured throughout 2018. I suspect any future placement failures could lead to a fundamental difference of opinion between us. Where that would lead who knows?
All this, to anyone not steeped in the reality of autism, probably makes me sound like a melodramatic, selfish, uncaring b
d. I'm really not, but after 20 years of it, I'm done.
Well, it's happened. J has moved to a permanent adult residential placement.
He's living in a house with 2 other similarly affected chaps and a team of carers about 12 miles from home.
J can now live a life enriched by the many and varied activities planned for him and his housemates. Activities that as parents we struggled to both cope with and fit in to our daily life. Plan is for J to visit us at home one weekend a month.
Frankly, over the last 18 months we have slipped into a routine of simply taking the route of least resistance.
Result: J becoming totally isolated from the outside world as we simply ran out of gas.
The house is eerily quiet and I sit here feeling both immense relief and deep sadness.
Mrs H is fast asleep, totally exhausted.
A long, long holiday beckons.
He's living in a house with 2 other similarly affected chaps and a team of carers about 12 miles from home.
J can now live a life enriched by the many and varied activities planned for him and his housemates. Activities that as parents we struggled to both cope with and fit in to our daily life. Plan is for J to visit us at home one weekend a month.
Frankly, over the last 18 months we have slipped into a routine of simply taking the route of least resistance.
Result: J becoming totally isolated from the outside world as we simply ran out of gas.
The house is eerily quiet and I sit here feeling both immense relief and deep sadness.
Mrs H is fast asleep, totally exhausted.
A long, long holiday beckons.
Well, I thought it was about time for an update, probably the last one.
This week J turned 25. He has just moved in to a new residential house, the 3rd attempt at finding one that works long term.
25 years since the day he arrived with all my hopes and dreams of teaching him how to square cut long hops, bowl inswingers, send goalkeepers the wrong way, taking him to Upton Park, buying his first car, him buying me a beer and everything else.
3 years later that all went up in smoke with his diagnosis and we faced up to what was in store for the family. It ain`t been a smooth ride but here we are. My marriage and family intact and in January, fingers very much crossed, my daughter will give me a grand daughter.
Here`s J in his favorite place.
This week J turned 25. He has just moved in to a new residential house, the 3rd attempt at finding one that works long term.
25 years since the day he arrived with all my hopes and dreams of teaching him how to square cut long hops, bowl inswingers, send goalkeepers the wrong way, taking him to Upton Park, buying his first car, him buying me a beer and everything else.
3 years later that all went up in smoke with his diagnosis and we faced up to what was in store for the family. It ain`t been a smooth ride but here we are. My marriage and family intact and in January, fingers very much crossed, my daughter will give me a grand daughter.
Here`s J in his favorite place.
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