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

[thejigsup]

That's tough. What next?

[Seraphim]

There is no next unfortunately. He ages out of services today. And he told me he wants NO therapy, like , ever. He is happy as he is and that's that and I can NEVER make him do therapy ever again. He has developed his own strategies and he's very happy with his own skills and it doesn't matter one hoot that I'm not.

 

Yup, he is that resistant.

[thejigsup]

Will he ever be able to function in society without some form of ABA? My son got a lot out of it. He's far from perfect, but he can function independently to a great degree, like pay bills, balance a checkbook, etc...

[Seraphim]

Will he ever be able to function in society without some form of ABA? My son got a lot out of it. He's far from perfect, but he can function independently to a great degree, like pay bills, balance a checkbook, etc...

 

I have no idea. But really the system failed him by identifying him way too late.

[Seraphim]

[Seraphim]

Cheet was talking about further testing that her son has to have. The test for fragile X. I looked at the symptoms for fragile X and a lump just came to my throat. It does sound......

 

I guess I better order that test for my son. When I go down to have his disability package filled out I will order the genetic test. But I just want to puke because it has a worse prognosis then already given for him.

 

I almost don't want to know.

[Seraphim]

Actually I can't order that test. He has to agree as he is over 16. I asked him if that something he would like to do. And he said thank you for asking me mom and not just ordering it. I would like to think about if I want to know what caused my autism or not know. Thank you for giving me that right to decide on my own.

[thejigsup]

Vic, I would very much doubt that your son has Fragile X. I have worked with some of those kids in the past and most, if not all, of them have some degree of mental retardation. From what you have told us, R is very bright. I wouldn't worry about it.

[Seraphim]

Vic, I would very much doubt that your son has Fragile X. I have worked with some of those kids in the past and most, if not all, of them have some degree of mental retardation. From what you have told us, R is very bright. I wouldn't worry about it.

 

Yes, there was no mention of any kind of mental retardation at all.

[Seraphim]

So I got an appointment November 17 at 10 AM for my doctor to fill out the ODSP medical form. It is $300 for the form to be filled out but luckily he charges the Ministry of social services that amount not my son.

[Seraphim]

My son has a bad cold . I told him to take cough medicine or he would just cough endlessly and not ask for anything. I told him to look for the cough medicine in the bathroom cupboard or in the kitchen cupboard it's in a bottle and it's a liquid. He responds with, " well , that does not help me. What is it called? I said," I don't know can't remember if we bought it at the pharmacy or dad picked it up at work." ( my husband gets free OTC at work as part of his benefits) My son throws up his hands and says well, I can't find anything with that description mom!

 

On Friday he found out when he got to the college that his first class he didn't have because the professor wasn't going to show up. But he didn't read his emails ahead of time. He forgot his wallet at home so no food and no water. And he was there until 7:30 AM from 1:30 PM So he phones me at work freaking out. I said," you know what ,you're 18 years old that isn't my responsibility to remember your wallet remind you to check your emails I said I've been doing the stuff for you and your dad and I'm driving myself into my coffin .I am not doing it anymore you guys are just going to have to handle your own stuff. I'm sorry that you're there with no food and no water but that's your responsibility and I'm at work. I will see you at 1:30. " and he didn't call me back. He has to learn. Maybe being hungry and thirsty and sick will make an impression.

[Seraphim]

Another example of troubles with executive function.... I told him how to make a cup of tea. He boiled the water put the teabag in the cup poured some of the water in the cup brings it to me and says is that three-quarter's mom ? There was a little bit of a dribble of water in the bottom. I said no honey that means that three quarters of the cup is filled with water. He looks at me and then says oh 75%. I said yes hon that's the same thing. Ooooooh ok.

 

 

He also has a lot of problems with his hands. So when he was trying to take cough medicine he had to bring his face to the spoon and not the spoon to his face. If he tries to bring the spoon to his face the stuff is everywhere.

[Seraphim]

I was just reading a medical journal or are they said if you have an autistic child and no family history of autism there had to be a big genetic mutation or change in that child. That something went wrong with the replication of DNA. Those families are less likely to have further autistic children.

 

My son was asking me if his children would be autistic. I probably honey. I said we would love them as much as we love you. He said I know you would but not everybody thinks like you mom. I would have to find somebody who wouldn't mind having autistic children.

[Fudgie]

I wish I could remember the name of the article but years ago, scientists came out and said that autism is very likely to have an epigenetic basis. Epigenetics is the word for how things that the mother is exposed to, both WELL before and possibly during her pregnancy, may affect the genetic expression and development of the fetus. Usually with broad-reaching implications. I think I first read about it in regards to stress/famine versus abundance and how mothers were exposed to such conditions during x periods of their life were more likely to have children with x conditions. They accounted for other variables too.

 

I believe there are environmental factors at play that we don't completely understand. Not to say that the "organic, non-GMO, chemical-free-drug-free everything" crowd is right. I don't think they are. I think there is a lot that we don't understand and maybe will not for a long time.

 

I am fairly certain my sister will never have children (she is 23 now and is like an 10/11 y/o, no sexual/romantic desire or development whatsoever) and I think that's a good thing because of her dependency in general, because she wouldn't be able to care for the child. She can't live independently and will never be able to. But that's neither here or there, she can't stand the idea of kissing and things like that. I will take her in when my parents are older/gone. I think I would be okay with her having a relationship but I would have to screen the guy and I would make sure she's on effective birth control. I know my parents would do the same.

 

I have no idea about my brother. He's really stunted sexually, he's like maybe 13 in that regard. I don't really know what will happen with him. I think if he gets lucky, maybe he can find a woman who will bear the majority of child rearing work because while he's very good at what he does in academia, he struggles with things at home.

 

That's only if he gets out of his current asexual stage. Which could go for many more years. Who knows.

 

As long as they are happy and not putting themselves into bad situations (ie children when unable to live independently whatsoever) that leave them vulnerable. I worry about my sister a lot. Maybe a little about my brother but not as much. He's a smart guy and very cautious.

[thejigsup]

My brother and sister are both Aspies. Undiagnosed, but they are. Social awkwardness, difficulties in communicating with others, etc...yeah, they're there, in spades. My son is on the spectrum and so is my youngest niece (both diagnosed), my brother's youngest. Doctors told me if I had another child there would be a 50% chance that child would have ASD. Also, they most likely would have learning disorders instead of being gifted, like my son. That was enough to keep me from having any more children. My son has no learning disorders and life is still challenging for him. I would not do this to another child, or myself.

[Fudgie]

I feel the same, jigs. I felt from a young age that I shouldn't have kids because my mom had 2/3 kids with autism so the odds didn't look good for me at all. Not to say that it won't be a rewarding life, but it's a hard life. I think we can all agree to that. The best thing I can do is spend time with my family and be there for my sister.

[Seraphim]

Well, that will be for my son to decide. But he and I don't see autism as a catastrophe.

[Fudgie]

It's made my siblings' lives very difficult on many levels. I don't see it as a good thing because of the struggle and pain they have endured, esp my sister with just learning how to communicate. If that makes me a horrible person, well, I can accept that. I think my sister having a child, with or without autism, would be a catastrophe. How can she take care of a child and raise a child when she can't live independently?

[Fudgie]

I wish people would accept it too. But the reality is that even if people accept it more than they do now, it's a struggle. All the acceptance in the world won't make my sister's speech better, or my brother's social skills better, etc. There are many hurdles and that's why my family has pushed both of my siblings into therapy/medication and both will need to stay on for life for cognitive betterment but that is the nature of the disorder.

 

I could never wish autism upon another family or person. It is very hard for everyone, including my siblings. All I can do is love and support them, which I do.

[Seraphim]

I am not going to have anymore of this talk especially in regards to my child.

[Fudgie]

We've all been through having a close loved one with autism (in jig's case, her son; in my case, both of my siblings). We are in the same boat. It is not meant to be hurtful, I think we just have different ways of seeing the same situation.

[Seraphim]

Well, it is about my son in this journal.

[Fudgie]

If I knew me sharing my experience with autism wasn't going to be welcomed (as well as jigs), I wouldn't have come here. Sorry to bother you on your journal. I won't be back to bother you. Good luck with everything.

[thejigsup]

Same for me. Sorry.

[Seraphim]

Apologies accepted, thanks.