" In a box not a bottle" Asperger's revealed

[Seraphim]

[video=youtube_share;EsEeFWfpJRQ]

[Seraphim]

yeah, i'd agree with that.

 

Yes, primarily genetic as in it runs in families or is a genetic mutation where there is no family history.

[Seraphim]

I am so beyond frustrated. I went to the parental ABA class today, all day. I could have actually taught the class. Apparently what I've been doing all my life is ABA anyway. I was just instinctually doing it.

 

I just want to cry. Everywhere I go I KNOW THIS STUFF ALREADY.

 

Just get it in your head L, no one gives a crap about services for ASD adults. You are on your own. Or create your own services.

[Fudgie]

I definitely do think autism runs in families. Runs in mine for sure. 2 confirmed diagnoses, my sister will be living at home forever, and I'm pretty sure my father is on th e spectrum. He struggled a lot when he was younger socially and he has gotten better but he still has a lot of awkwardness and social faux pas. He also gets stuck on subjects.

 

I'm sorry about the ABA course. My sister went reign ABA therapy. Now she works at a hospital. She will get some disability money as she's considered disabled so it's good to know that she has that and if she got laid off, she'd get more. She's a good girl.

 

There are very few resources for her. Now that we has a job, she's "set". I'm prepared to have her live with me when my parents are gone. I'll be damned before she goes into a group home. She will never go there.

 

So many group homes, not enough resources to ensure that these folks are perform to the best of the ability. So sad.

[Seraphim]

It is sad. Basically we have accepted we will have no retirement. We will have to work until we die. All of our retirement funds will probably go to supporting our son after we are gone.

 

Yeah I'll be damned if he ever goes to a group home ,not happening.

 

We want to do is buy a duplex so we can live in part and he can live in the other part. That way he's independent but he still has somebody there. Then after we are gone he can rent out our portion and have a bit of income. My brother can handle his trust and after my brother is gone the bank can handle it. ( my brother is a financial advisor)

[Batya33]

I am so beyond frustrated. I went to the parental ABA class today, all day. I could have actually taught the class. Apparently what I've been doing all my life is ABA anyway. I was just instinctually doing it.

 

I just want to cry. Everywhere I go I KNOW THIS STUFF ALREADY.

 

Just get it in your head L, no one gives a crap about services for ASD adults. You are on your own. Or create your own services.

 

Did you find that to be true of the other people attending (if you could tell?).

[Seraphim]

Did you find that to be true of the other people attending (if you could tell?).

 

All the people had much younger kids than me. The oldest child for another was 9. Almost 100% of services are aimed at young kids. There are virtually no services for adults with ASD.

[renaissancewoman101]

Sorry to hear that you cannot find services for your son. He is a fine boy though and you have taught him well (even without help) and I think he will do fine in life.

 

I have achondroplasia (which is another word for dwarfism), My parents never acknowledged that about me when I was young, so never had me diagnosed. I finally got diagnosed as an adult (after I went to see a endocrinologist), and I find that most service/help, etc. is geared for children. Even the endocrinologist that I saw was surprised my parents never went and had me diagnosed.

[Seraphim]

Sorry to hear that you cannot find services for your son. He is a fine boy though and you have taught him well (even without help) and I think he will do fine in life.

 

I have achondroplasia (which is another word for dwarfism), My parents never acknowledged that about me when I was young, so never had me diagnosed. I finally got diagnosed as an adult (after I went to see a endocrinologist), and I find that most service/help, etc. is geared for children. Even the endocrinologist that I saw was surprised my parents never went and had me diagnosed.

 

I am sorry that your parents could never acknowledge that , Ren. It is really sad when parents are more interested in people's opinion of them then getting help for their kids. I'm sure it is the major point that makes you so angry about it. I am sorry that happened. You are a wonderful person Ren never forget that. Hugs.

[Seraphim]

My very worst fear for my son is that one day after I'm gone he could end up homeless. The chances that autistic adults are going to be employed it is very slim. Of course we will try our very best to have him employed. But it is a very real possibility that he won't be. He's going to need a home and money to survive for the rest of his life. With out money and a home he could be living on the street. That idea just totally terrorizes me. My son has no family to take him after I am gone.

[itsallgrand]

This is not directly related to autism but when I learned about it, I thought I wanted to share it with you Vic.

In my city there are quite a few co-ops that were built not only for people like your son, but BY people like your son. There is a restaurant, for example, and they have shares and run the business as any other co-op. I went to visit the place and the food was good and the business is doing well. They are turning profit.

This was only one idea but I wanted to share it with you because I thought what was happening there was really cool and it got me thinking how popular co operatives are in my neck of the woods and how many of them have been successful.

 

Mostly wanted to share another option/opportunities I've seen.

[Seraphim]

Thank you so much for that IAG. Hugs. Cooperatives I believe are mostly a western idea. It does bring hope to the situation though doesn't it? The problem is not that he won't be able to do a job it's the interest. Mostly they are motivated by their niche interest. And his interest of course is gaming and Japanese anime but what do you do with that ,right? We have to create a job out of that he can be successful in. There are companies in Toronto that hire only autistic adults. But it would have to be again something that he would have an interest in. If he doesn't have an interest in it he won't do it. It makes no logical sense for him to do it if he does not like it. They aren't motivated in the same way we are for money it things like that.

 

But yes ,that is a very uplifting, thank you.

[Fudgie]

Vic, my sister's main interests are cartoons, fan art from certain series, and things like that. She loves Disney. She is now employed and I am stoked for her. She works in food service in a hospital. She assembles salads and does other things in the kitchen. Not cooking but you get my drift. She doesn't work in my hospital but I've seen in my own hospital that there is an artistic male adult who works in food services and then also a lady who Downs. She has been there for many years. It gives me hope.

 

My hope for your son is that he will continue to improve cognitively through treatment and while he'll have his niche interests, he will be able to hold down a job that doesn't involve them. My sister has gotten to that point and I'm really happy. And she enjoys her job too.

 

I think it's great that your brother can oversee the trust. My sister has one. I don't mind living with her and having some costs but I wouldn't want to financially support her 100% so I'm thankful for that. I think the duplex is a great idea.

 

I want to buy my parent's house in a couple decades (they own outright) and live there with my sister. It's big and she has a "wing" to herself. I could live in the rest. I've been told that no man would agree to such a living arrangement but you know what, that's life.

[Seraphim]

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[Seraphim]

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[Seraphim]

Still waiting for the CRA to make their decision and get it in the mail. SIGH!!!

[Seraphim]

[video=youtube_share;B-xgdqNtcDI]

 

Incredible video.

[Seraphim]

[video=youtube_share;T1HQKB2txgY] ]

[redrose85]

This is a really interesting conversation!

I can't remember if I already said this (sorry if I have) but as stupid as it may sound, until I watched Parenthood and observed one of the boys with Aspergers (obviously acting) I had no idea what it was really all about. I figured it was just social quirks and maybe a bit of obsessive behaviour. I had no idea what parents go through and how tough it is because it's not like you're fully autistic, you're functioning, you're quite intelligent, but you just don't quite fit in the mold of society. I know Aspergers is getting much more awareness and I think that is so wonderful. Vic, I have every confidence that your boy is going to do just fine in life, better than fine, because you've raised a strong and smart guy.

[Miss Firecracker]

My very worst fear for my son is that one day after I'm gone he could end up homeless. The chances that autistic adults are going to be employed it is very slim. Of course we will try our very best to have him employed. But it is a very real possibility that he won't be. He's going to need a home and money to survive for the rest of his life. With out money and a home he could be living on the street. That idea just totally terrorizes me. My son has no family to take him after I am gone.

 

That is my fear with my older, bipolar, ocd son. The younger one is guaranteed a government assisted group home, which almost scares me more than wondering about the other one being on the street. I hear some very unpleasant stories about assisted living homes. I feel all the things you do, and this is why I am trying so hard to keep myself healthy and outlive both my kids by just one day. :subdued:

[Seraphim]

This is a really interesting conversation!

I can't remember if I already said this (sorry if I have) but as stupid as it may sound, until I watched Parenthood and observed one of the boys with Aspergers (obviously acting) I had no idea what it was really all about. I figured it was just social quirks and maybe a bit of obsessive behaviour. I had no idea what parents go through and how tough it is because it's not like you're fully autistic, you're functioning, you're quite intelligent, but you just don't quite fit in the mold of society. I know Aspergers is getting much more awareness and I think that is so wonderful. Vic, I have every confidence that your boy is going to do just fine in life, better than fine, because you've raised a strong and smart guy.

 

Yes ,it is a neurological developmental disorder, not just quirkiness. Actually people with Asperger's do have autism, they just don't have what is termed classic autism with lack of speech. With Asperger's there is no cognitive delay as in lack of speech. There is an entire full range of symptoms IQs etc. etc. many people with Asperger's have normal to high intelligence. However ,you can get those with lower intelligence as well. So while they can be highly intelligent executive functioning skills can be extremely low.

 

It is pretty much an invisible "disability". And if you are above a certain functionality level like my son services are unavailable to you. And pretty much funding is also unavailable to you. Unless you have a visual disability as in a wheelchair a walker, walking stick you can get pretty screwed over as far as support. People look at you and don't understand why you are not typical.

[Seraphim]

That is my fear with my older, bipolar, ocd son. The younger one is guaranteed a government assisted group home, which almost scares me more than wondering about the other one being on the street. I hear some very unpleasant stories about assisted living homes. I feel all the things you do, and this is why I am trying so hard to keep myself healthy and outlive both my kids by just one day.

Hey Miss F,

 

Yes, the future is horribly scary.

[Seraphim]

I found a scholarship that my son can apply for through Autism Ontario.

[Fudgie]

Vic,

 

You have other family that is closer to R's age, right? Maybe he could have a family advocate when he is older and you are gone. That's what I'm going to do for my siblings.

[Seraphim]

Vic,

 

You have other family that is closer to R's age, right? Maybe he could have a family advocate when he is older and you are gone. That's what I'm going to do for my siblings.

 

They may want to they may not. The only other kids in the family he is really close to are my brother's daughters. The oldest is 13 and the youngest is nine. But they are more his generation, yes.