Just about the worst day of my life
Discussion
twoblacklines said:
Hammer67 said:
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.
All the best my friend, what you've been through sounds horrific.
I was like your son when I was 19. Hell, I broke my toe kicking through a stained glass door when I was 27 in a rage. I am 30 now. What did it for me was spirituality. When you realise you are connected to everyone through the quantum field you realise you are never truly alone. Being autistic, the world sometimes feels very lonely. You vs everyone. In your depression, you don't see the fact there are others with the same problems. You don't see others at all. It's not a cure but it really helps. And exercise and the right diet is really important. You just gotta realise you are different and don't try to be normal, because you will suck at it and so it gets worse. And you gotta find people who understand and care. That is probably the hardest part.All the best my friend, what you've been through sounds horrific.
I'm on the autistic spectrum too but I'm not gonna tell him I was ever like his kid cos I wasn't, people with autism who also have a severe learning disability do not wind up posting on car forums ffs.
Which is not to diminish how hard it is being a less severely impaired autistic person, g*d knows it's been horrific at times, but it's hard in very different ways. You're right, understanding that the mythical 'norm' isn't gonna happen is Step 1 towards decent mental health for autistic people - I spent my childhood being told it was my own fault that I found it hard to make friends with 'normal' kids and have now spent the first thirteen years of my adulthood forging close and lasting friendships with a wide range of other 'misfits'. Which hopefully J will eventually do too, in his own way and on his own timescale. But he'll still be a severely impaired autistic person, which you and I are not.
FlyingMeeces said:
Dude. You are much, much, much less severely affected by your autism than H67's boy is.
I'm on the autistic spectrum too but I'm not gonna tell him I was ever like his kid cos I wasn't, people with autism who also have a severe learning disability do not wind up posting on car forums ffs.
Which is not to diminish how hard it is being a less severely impaired autistic person, g*d knows it's been horrific at times, but it's hard in very different ways. You're right, understanding that the mythical 'norm' isn't gonna happen is Step 1 towards decent mental health for autistic people - I spent my childhood being told it was my own fault that I found it hard to make friends with 'normal' kids and have now spent the first thirteen years of my adulthood forging close and lasting friendships with a wide range of other 'misfits'. Which hopefully J will eventually do too, in his own way and on his own timescale. But he'll still be a severely impaired autistic person, which you and I are not.
I couldn't even talk until I was 5, the only reason why I am high functioning now is due to 4 years of speech therapy and physical therapy.I'm on the autistic spectrum too but I'm not gonna tell him I was ever like his kid cos I wasn't, people with autism who also have a severe learning disability do not wind up posting on car forums ffs.
Which is not to diminish how hard it is being a less severely impaired autistic person, g*d knows it's been horrific at times, but it's hard in very different ways. You're right, understanding that the mythical 'norm' isn't gonna happen is Step 1 towards decent mental health for autistic people - I spent my childhood being told it was my own fault that I found it hard to make friends with 'normal' kids and have now spent the first thirteen years of my adulthood forging close and lasting friendships with a wide range of other 'misfits'. Which hopefully J will eventually do too, in his own way and on his own timescale. But he'll still be a severely impaired autistic person, which you and I are not.
What I am trying to tell him is with the right professional help and simply time, he will turn out alright. It just takes courage, willpower and time. On both his and his boys side.
^^^^ 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 b
d.
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.
Hammer67 said:
All this, to anyone not steeped in the reality of autism, probably makes me sound like a melodramatic, selfish, uncaring bd.
Only to someone who was themselves selfish and uncaring.d.I'd not seen this thread before, and reading through it, I was so much hoping it would work out well for you and your family. Your last post, therefore, made for desperately sad reading, and for me at least provoked nothing but sympathy.
For all that my own kids can annoy the hell out of me at times, at the end of it all, they are the only three people in the world guaranteed of my complete and unwavering support at all times and under any circumstances. No matter what they do as they grow up, they will still always be my kids, and I will always love them unconditionally.
I simply cannot imagine being in a position where I would have to give up and surrender them to the permanent care of others for their own good because I couldn't cope. It must be ripping you apart, and if anyone even comes close to thinking you selfish and uncaring, then frankly their opinion isn't worth having.
Gutted to read your last update.
My severely autistic brother in law sounds very similar to your lad. How my wifes family put up with it for so long I never know - both verbal and physical abuse. My own relationship with him isn't great as I find it difficult to rationalise his behavior to his mum and elderly relatives. He bullys them and if anyone else did it you'd not put up with it, but he is disabled. He threw an almightly and very public strop recently that on a normal day police should have been called.
Anyway, he is 39 and for the past 7 years has lived semi independently. This was a distant dream when I first met him some 18 years ago. Sheltered accomodation with a warden. He has very little contact with support services which has given us some major headaches recently.
On a positive note. If and when he does move out it will throw up different problems and problems you wont have even thought about! For himself living in his own place bizzarly the best place for him. His own stuff and manages his own routines (just!) Stuff like Christmas foxes him as he's out of routine and for the first time this year he was keen to get back to his.
How vulnerable he is worries us all but thats who he is and there is little to do other than to make as many practical arrangements as possible and accept it.
Anyways all the best with it! Getting him somewhere to live independently will be best for him (and you) in the long term.
My severely autistic brother in law sounds very similar to your lad. How my wifes family put up with it for so long I never know - both verbal and physical abuse. My own relationship with him isn't great as I find it difficult to rationalise his behavior to his mum and elderly relatives. He bullys them and if anyone else did it you'd not put up with it, but he is disabled. He threw an almightly and very public strop recently that on a normal day police should have been called.
Anyway, he is 39 and for the past 7 years has lived semi independently. This was a distant dream when I first met him some 18 years ago. Sheltered accomodation with a warden. He has very little contact with support services which has given us some major headaches recently.
On a positive note. If and when he does move out it will throw up different problems and problems you wont have even thought about! For himself living in his own place bizzarly the best place for him. His own stuff and manages his own routines (just!) Stuff like Christmas foxes him as he's out of routine and for the first time this year he was keen to get back to his.
How vulnerable he is worries us all but thats who he is and there is little to do other than to make as many practical arrangements as possible and accept it.
Anyways all the best with it! Getting him somewhere to live independently will be best for him (and you) in the long term.
That is tough. Nothing else can be said about it.
Out 2 year old is being assessed currently after developing epilepsy at 6 months. She is happy, smart and affectionate so we know she is not going to be on the bad end of the spectrum but we can't help but think of her future in terms of school, fitting in etc etc.
Out 2 year old is being assessed currently after developing epilepsy at 6 months. She is happy, smart and affectionate so we know she is not going to be on the bad end of the spectrum but we can't help but think of her future in terms of school, fitting in etc etc.
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.
From following your story, you've certainly done the right thing for everyone - It can't be easy making a decision like this, but I can only imagine the relief for yourself and the rest of the family.
There will be a period of settling, but take the time to plan the next steps and a holiday should definitely be on the cards.
You might feel like enjoying the reduction in stress levels, you have the right to do this after the years of struggle.
Here's to the future.
There will be a period of settling, but take the time to plan the next steps and a holiday should definitely be on the cards.
You might feel like enjoying the reduction in stress levels, you have the right to do this after the years of struggle.
Here's to the future.
I recall reading some of this back in 2012. Since then I've had my own kid who too is autistic, although nowhere near your son's level. You have my sympathy and respect in equal measure but he's on the best place he can be. My other half used to work in a home like your son is in and they have a great life.
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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