hello there ! :)best thing about my son is he is wonderfull:)

[tidal]

Hi my son is wonderfull and oh yes by the way he has asd ! always say that should be the second or last or thing that is mentioned or not mentioned ! as it is not the most interesting thing about someone ..or that is the mentality that should prevail . Good to be part of the community my son is 20 now and has not left the house for the past 7 years ....

there was some help from the professionals when he was diagnosed but to no avail. I refuse to put him on medication (experience of this with friends who have asd and have had meds is not good)and as fully grown man I let him make his own decisions and he does not want meds.He says he is very happy but I worry as it is only me and we have no other family at all unfortunately his father has asd and his family have disowned him and I try to educate them on it but they do not want to know. anyway I just fear when I am gone will they put my son in adult care?

He gets by at home with me but obviously as he can not go out he is reliant on me for things that require going outside (ok these days a lot can be done on line) but things like if he were ill etc he would rather die at home than go out to a hospital etc. I guess you would say he is mid functioning autism if there is such a thing.He can have a very intelligent conversation but with strangers would not talk or will run away.Worry how he will cope when I am gone...

I am fifty and in good health so far but you never know what is around the the corner.I worry so much one thing people can take advantage of him but also if he is overwhelmed he can throw things sometimes what if he were to hurt someone unintentionaly is he protected? would they lock him up? I love my son a lot but I worry a lot also ..if I could protect him from beyond the grave believe me I would !

 

[Isadoorian]

Welcome to the Forums! I hope you make new friends and enjoy your stay in the process!

 

[SusanLR]

Welcome to the forums, tidal.

I understand your situation as I also lived it.
Lived life a lot like your son.
I could leave the house, except for three years when I went through a breakdown,
but, I never left home to live on my own.
My first "have to" stay overnight in a hospital led to this breakdown.
Yes, I was OK too, living with my parents. But, independence was impossible.
I got a BS and an associate's degree, I learned to drive through private tutoring
in my 20's, I was homeschooled through highschool.
I had good employment.
Only because everything was close to home so I never had to live elsewhere.
No learning difficulties, but, autistic functioning problems.

Believe me, he should start doing little steps of being outside the house if at all possible.
Being left alone with no family is what happened to me and it would have been life in
some group home except for knowing someone who took me in for rent I could afford on SSI.

It is better to be able to do somethings outside of the house before it is sink or swim time.
I sank, but, stayed afloat. Pure survival.
The temper may get better as he gets older. Mine did.
And living with someone else I knew I had to keep it under control.
If you hurt someone during a meltdown or temper, no, you are not protected due to ASD.

 

[Nitro]

Hi tidal

 

[tree]

 

[Streetwise]

I wish I could tell you his life will be blissful I cant hes got to learn to be independent Ive suffered not being independent he has too practice now! my mother is dead I was devastated My family!!! acted the way they always did ,so no difference ,Mam had one friend to help little bits ,but its to hard ,He needs to learn to access help as naturally as breathing,learn financial independence ,how to talk to government depts ,doctors (mds,hospitals!!!!)its strange to do yourself .Teach him about self defence how to know when to defend himself teach him about self assertiveness ,not just trying to please !people !if !he does that ,I did that for 30 !years !until it became unbearable so now I have no contact ,because of doing it for that long

 

[the_tortoise]

If he already is as independent as he can be, start looking into support options for him now so you can make sure he has input into what happens to him and help him prepare for the “someday” changes, try to put a plan in place while you are still alive.

He might be able to live on his own with support workers to help him with things like shopping and going to the doctor if he is sick.

 

[Mary Terry]

I worry about the same thing for my non-verbal, low-functioning nephew with ASD. He is about 30 years old and lives with his mother who has high-functioning ASD. She is about 65 years old and in poor health. His father (my brother) is deceased and I am designated to become my nephew's guardian after his mother dies or becomes incapacitated. I'm also 65 years old and neurotypical.

My plan is to do everything I can to keep my nephew in his home, the only home he has ever known, and hire someone to live with him and take care of the house and yard, provide good meals, take him to doctor appointments, etc. I live nearby so I can easily drop in on him to make sure things are going well. I will try to find an older caretaker who understands autism, perhaps with an adult autistic or handicapped child of their own who can also live in the house. It is a very nice, large house with 4 bedrooms and 2-1/2 baths so there is plenty of room for 2 or 3 other people to live there with him.

If all else fails, I will move my nephew into our home and rent out his house to generate income for him. My bigger worry is who will replace me when I can no longer take care of my nephew. No one else in our family has been receptive to the idea and I don't want him to end up in a group home or institution.

 

[Streetwise]

I worry about the same thing for my non-verbal, low-functioning nephew with ASD. He is about 30 years old and lives with his mother who has high-functioning ASD. She is about 65 years old and in poor health. His father (my brother) is deceased and I am designated to become my nephew's guardian after his mother dies or becomes incapacitated. I'm also 65 years old and neurotypical.

My plan is to do everything I can to keep my nephew in his home, the only home he has ever known, and hire someone to live with him and take care of the house and yard, provide good meals, take him to doctor appointments, etc. I live nearby so I can easily drop in on him to make sure things are going well. I will try to find an older caretaker who understands autism, perhaps with an adult autistic or handicapped child of their own who can also live in the house. It is a very nice, large house with 4 bedrooms and 2-1/2 baths so there is plenty of room for 2 or 3 other people to live there with him.

If all else fails, I will move my nephew into our home and rent out his house to generate income for him. My bigger worry is who will replace me when I can no longer take care of my nephew. No one else in our family has been receptive to the idea and I don't want him to end up in a group home or institution.

you never know who will help ,I had no idea of the very neighbour who is next door literally ,would be the one to help me ,she even coerced me to go to a mandatory disability review ,I wouldn’t of gone if she hadn’t done that .

 

[Mary Terry]

you never know who will help ,I had no idea of the very neighbour who is next door literally ,would be the one to help me ,she even coerced me to go to a mandatory disability review ,I wouldn’t of gone if she hadn’t done that .

You're lucky to have a good neighbor. The neighbors near my nephew and his mother know that they are autistic but don't really understand what autism is. They do help sometimes, with cutting the grass and other physical chores that my nephew and his mother cannot do, and they have called me a couple of times when something seemed wrong at my nephew's house so I could investigate. But none of them is a candidate for nephew's long term care so I'm trying to get one of my adult children to make a commitment to me that they will take care of him after I am gone. My children have young children of their own and are very hesitant to make the commitment, at least at this stage of their lives.

 

[Streetwise]

it’s not purely luck, I’ve Heard her say to people I’d rather have 50 of Streetwise( don’t want to reveal my real name ) as I’m very quiet and I very rarely make any demands, I also try to help them, I’m fully aware that it a two way street.

 

[Mary Terry]

it’s not purely luck, I’ve Heard her say to people I’d rather have 50 of Streetwise( don’t want to reveal my real name ) as I’m very quiet and I very rarely make any demands, I also try to help them, I’m fully aware that it a two way street.

That's a great attitude by both of you and gives me hope for this world's future.

 

[tidal]

Welcome to the Forums! I hope you make new friends and enjoy your stay in the process!

Thankyou Isadoorian ,that is a great quote you have given

 

[tidal]

Welcome to the forums, tidal.

I understand your situation as I also lived it.
Lived life a lot like your son.
I could leave the house, except for three years when I went through a breakdown,
but, I never left home to live on my own.
My first "have to" stay overnight in a hospital led to this breakdown.
Yes, I was OK too, living with my parents. But, independence was impossible.
I got a BS and an associate's degree, I learned to drive through private tutoring
in my 20's, I was homeschooled through highschool.
I had good employment.
Only because everything was close to home so I never had to live elsewhere.
No learning difficulties, but, autistic functioning problems.

Believe me, he should start doing little steps of being outside the house if at all possible.
Being left alone with no family is what happened to me and it would have been life in
some group home except for knowing someone who took me in for rent I could afford on SSI.

It is better to be able to do somethings outside of the house before it is sink or swim time.
I sank, but, stayed afloat. Pure survival.
The temper may get better as he gets older. Mine did.
And living with someone else I knew I had to keep it under control.
If you hurt someone during a meltdown or temper, no, you are not protected due to ASD.

Yes thankyou Susan and sorry you have had such difficulties that is very usefull what you say to do your happy belated birthday to you we share the same month of birthday

 

[tidal]

I wish I could tell you his life will be blissful I cant hes got to learn to be independent Ive suffered not being independent he has too practice now! my mother is dead I was devastated My family!!! acted the way they always did ,so no difference ,Mam had one friend to help little bits ,but its to hard ,He needs to learn to access help as naturally as breathing,learn financial independence ,how to talk to government depts ,doctors (mds,hospitals!!!!)its strange to do yourself .Teach him about self defence how to know when to defend himself teach him about self assertiveness ,not just trying to please !people !if !he does that ,I did that for 30 !years !until it became unbearable so now I have no contact ,because of doing it for that long

 

[tidal]

Thankyou streetwise you are absoloutly correct about the various authorities he will have to deal with ..and they are a pig I only myself barely am able to deal with all the bs they throw his way just managed to egt him his full award of dla money he is entitled too and missed out on for many many years...anyway this is the kind of thing he needs to be taught or the world will destroy him. I think I am going to take the approach of a little at a time gradualy introduceing him so he can gain full control over each matter ie bills the government paperwork for his benefits etc etc it will be a long road!

 

[tidal]

I worry about the same thing for my non-verbal, low-functioning nephew with ASD. He is about 30 years old and lives with his mother who has high-functioning ASD. She is about 65 years old and in poor health. His father (my brother) is deceased and I am designated to become my nephew's guardian after his mother dies or becomes incapacitated. I'm also 65 years old and neurotypical.

My plan is to do everything I can to keep my nephew in his home, the only home he has ever known, and hire someone to live with him and take care of the house and yard, provide good meals, take him to doctor appointments, etc. I live nearby so I can easily drop in on him to make sure things are going well. I will try to find an older caretaker who understands autism, perhaps with an adult autistic or handicapped child of their own who can also live in the house. It is a very nice, large house with 4 bedrooms and 2-1/2 baths so there is plenty of room for 2 or 3 other people to live there with him.

If all else fails, I will move my nephew into our home and rent out his house to generate income for him. My bigger worry is who will replace me when I can no longer take care of my nephew. No one else in our family has been receptive to the idea and I don't want him to end up in a group home or institution.

This is it Mary you understand as with all the best intentions sometimes there is only so much a person can do and everyone needs help so I think you have it about right to see if you can get him some live in help if you are in a situation to do that that would be ideal. How well do you know your nephew as does he have any other way of communicating if he likes someone or not? As he could tell you if he likes the carer or not ..and a good way to go about it if you have to have a live in carer is to take it a little at a time introduce him slowly in short visits for him to get used to the person and you are near by so you can keep an eye on the carer make sure your nephew is being treated right..good luck. Or you could employ someone who lives nearby to go in and do duties etc see how it goes and if he needs more help get someone to live in.Hewill be lonely without his mum he is very lucky to have you.Actualy you have reminded me that my sons dad has two other brothers so there may be some extended family there that would be willing to help my son if the worst should ever happen,unfortunatley his grandparents on bothe sides are just realy not nice people who sadly do not care about him or me .Anyway good luck to you he is very very lucky to have you

 

[tidal]

If he already is as independent as he can be, start looking into support options for him now so you can make sure he has input into what happens to him and help him prepare for the “someday” changes, try to put a plan in place while you are still alive.

He might be able to live on his own with support workers to help him with things like shopping and going to the doctor if he is sick.

Yes thankyou tortoise I have three friends with asd and also my sons dad has asd and I have seen how the system operates with them and yes that terrieifes me as well as I have seen breakdown after breakdown due the "support" from government authorities who frankly have no clue about autism whatsoever..and I have no family either.My thoughts were actualy to get involved with the local church as we are fortunate enough to be living in a very safe village and people are very kind here it may be possible that some decent folks might be around ..my neighbour is very kind but he is not long for this world.I will educate him slowly on all the stuff like the bills etc but am wary of government support they were absoloutly useless when I tried last time when he was very young and he even told me they were the cause of his breakdown.

 

[Streetwise]

This is it Mary you understand as with all the best intentions sometimes there is only so much a person can do and everyone needs help so I think you have it about right to see if you can get him some live in help if you are in a situation to do that that would be ideal. How well do you know your nephew as does he have any other way of communicating if he likes someone or not? As he could tell you if he likes the carer or not ..and a good way to go about it if you have to have a live in carer is to take it a little at a time introduce him slowly in short visits for him to get used to the person and you are near by so you can keep an eye on the carer make sure your nephew is being treated right..good luck. Or you could employ someone who lives nearby to go in and do duties etc see how it goes and if he needs more help get someone to live in.Hewill be lonely without his mum he is very lucky to have you.Actualy you have reminded me that my sons dad has two other brothers so there may be some extended family there that would be willing to help my son if the worst should ever happen,unfortunatley his grandparents on bothe sides are just realy not nice people who sadly do not care about him or me .Anyway good luck to you he is very very lucky to have you

just dawned on me WebCam !haven’t got that video camera !hide it ,I wish I done that with my mother! But somebody becoming paralysed ( losing their way to communicate when they had the sense and you don’t )over days doesn’t give your memory/ discernment aid, learn how to use one , contact the citizens advice bureau ,make sure it’s one very close to you in case you have to go to a tribunal .

 

[Streetwise]

Thankyou streetwise you are absoloutly correct about the various authorities he will have to deal with ..and they are a pig I only myself barely am able to deal with all the bs they throw his way just managed to egt him his full award of dla money he is entitled too and missed out on for many many years...anyway this is the kind of thing he needs to be taught or the world will destroy him. I think I am going to take the approach of a little at a time gradualy introduceing him so he can gain full control over each matter ie bills the government paperwork for his benefits etc etc it will be a long road!

another thing to check if you’re in the UK and have an autistic child ,about criminal responsibility, check the criminal code section 16 ,it details how you are considered to be criminally responsible or not !!!! ,it sounded like we might not be considered criminally responsible it mentions mental disorder I don’t know if they still categorise autism under a mental disorder .