Not a primary cause, but definitely a layer . . .

[alliematt]

One of the causes of C-PTSD, if I understand correctly, is dealing with the long term illness of a family member.

Well, my *specific* circumstance isn't the cause of my C-PTSD, if I have it, but I think it adds a layer.

I have a teenage son with autism.  He's a good kid.  He's rather high-functioning.  He can take care of his basic needs.  He doesn't have a mean bone in his body.  He's kind, considerate, and concerned about people.  The people at our church love him.  So do his teachers.

But I can only take so much of his obsessions.  It gets old after a while having the umpteenth conversation about game show sets.  He can pick out the differences between the set of a game show in one season and then the same one in the next season.  It gets old hearing about cartoons that he will watch on YouTube.  (He recently found a clip of an old cartoon he used to watch . . . which was dubbed into a foreign language.)  We will need to get guardianship of him when he turns 18, mostly for his legal protection.  In the eyes of the law, when he turns 18, he's an adult, and the law does not care that he has autism.  There will be things he's legally responsible for unless we have guardianship of him. 

And although he has done well in school, and I'm sure there's a niche for him somewhere . . . what about the future?  Who takes care of him when we're gone?  We don't have family here, and do you know how hard it is to ask someone who's not related to you, would you look after my son?  There are services, but the waiting lists are long.  Whenever I hear about services for the disabled, it always seems to come down to, "Yeah, there's all these great services and all that for you, but fat chance of you getting any of them because there's no money available to fund them."

I tried going back to school so that I could get a job that might pay for my son's upcoming care as an adult.  I didn't finish for a number of reasons, racked up a lot of debt, and now, the money that could have paid for his care is going to pay for debt.  I don't trust that certain safety nets will be there for him when he needs them. 

This layer of stress is bad enough when you do not deal with depression and other stressors.

[sanmagic7]

having cared for a mentally ill daughter, i can relate to the unimaginable stress that you're under.  i'm just glad your son is a good son.  that helps, at least a little.   

fighting the legal system is never fun, and certainly adds more stress.  i do hope you don't beat yourself up for the school debt - you were doing what you thought best at the time, and it just didn't work out.  in the meantime, while i have no answers for your questions and concerns, i do have faith that things will work out for you as you go along.  i hope you can get a break every so often from your son's obsessions.  and best to you in finding a guardian is that's what's ultimately needed.  my heart is with you.

[alliematt]

Wow.  Mental illness is rough enough when you're dealing with it; I can't imagine dealing with a family member that does. 

[MyselfOnline]

I think lack of reciprocation (one-sidedness) and unpredictability of flare-ups are both aspects of mental illness in others that can be most destabilising. I cared for someone with schizophrenia, which is why I say this.

But perhaps your son's repetitive and predictable discussions affect you in another way, by their very relentlessness?

[radical]

I know the worry well. My sister was severely disabled and my mother cared for her until her (my sister's) death a few years ago.

It must be really hard being the main person available for him to talk to, especially when that conversation is repetitive and has nothing in it that is rewarding for you.  A friend has Asperger's and she runs groups developing social skills for others on the spectrum, via the society that supports individuals affected by autism and their families.

Conversation skills will be important for your son - turn-taking, listening, knowing to look for signs that it is time to stop, these can be developed, maybe not perfected, but hugely improved.  Is there any other outlet on the internet etc. where people share his fascination?

It sounds like you are a brilliant Mum.

[alliematt]

I think lack of reciprocation (one-sidedness) and unpredictability of flare-ups are both aspects of mental illness in others that can be most destabilising. I cared for someone with schizophrenia, which is why I say this.

But perhaps your son's repetitive and predictable discussions affect you in another way, by their very relentlessness?

I think they do.  Autism is not a mental illness; it's a developmental disorder of unknown cause, although it's considered neurobiological.  Early intervention is helpful; Matthew was in speech therapy for about nine years and he's in special ed in high school. 

He's been on vacation from school this week--he goes back Thursday--and I'm getting tired of hearing about game shows!  And I don't want to scream at him to "shut up". 

[alliematt]

and best to you in finding a guardian is that's what's ultimately needed.  my heart is with you.

Our guardianship papers were filed in December.  We have an appointment on January 12th, ordered by the court, to take him to a particular psychologist.  I knew that this was coming, it's part of the application process.  We've explained as best we can about guardianship and why he's got an appointment.

[Wife#2]

Allie,

I sincerely love how much love you show towards your son. I am the younger sister to a severely Autistic, non-communicating sister. I'm old enough that they used a different, non-pc name back then. Anyway, Dad was the one who did all the work for my sister. He found her a residence center because standard education was not going to work for her. Then, when she 'aged out' of that facility, he helped the facility find her a 'half-way house' with a nursing staff and everything my sister would need.

She was happy there until she died. At the age of 36.

Part of what helped my father was that she was declared disabled and legally incompetent to be independent. Her disability was complete, setting into place options that might not be available for self-sufficient, communicative folks with Autism. As for the expense, I wish I had answers. Your son's disability (Social Security Disability) benefit should help offset that a good deal.

I don't know everything that my father had in place, but I do know that he had written into his will that she be the primary beneficiary after my stepmother was taken care of. All the rest of us kids are self-sufficient, so that made sense to all of us. When she died before Dad, he rewrote his will. I don't know, but I do wonder if he's decided to donate his assets to other children and young people with Autism. It would be like him and would make sense.

[alliematt]

Your father sounds like such a caring parent. 

My son should qualify for disability when he turns 18.  (More paperwork, arrgh. :-) ) So you're right, that should help with the expense.  We are fortunate that our son is reasonably high-functioning (he has speech and is pretty self-sufficient, he can care for his basic needs, do his own laundry, and do some simple cooking.)  Much will be a matter of finding his "niche" and a way that he can be safely supervised.