NotBlueAtAll

I'm just a fat gal with a blog and an opinion. Well, lots of opinions.

My Shame & Pain: Seeking Help

April25

I don’t often talk about my family in a present tense sort of way. In my eyes it’s far too fucked up and broken to deserve such mentions. I just had a long talk with my brother. He is amazing. I love him more than…well, anything. Which is why it is so heartbreaking that I can’t currently help him. He rarely opens up the way he did today and I did my best to not let him hear me cry on the phone. All I could do was tell him not to believe their (dad & his wife) bullshit, tell him he’s awesome and never forget it and insist that somehow I will get him the fuck out of there.

I hate feeling helpless. I hate how they treat him. He used to not think it was so bad and that I was being too harsh, but now he sees things as they are and wants out badly. Which is why it hurts so fucking much right now because I cannot help him. I’m so fucking poor if I think about it for more than a minute I will be a puddle of despair on the floor. So, I do my best not to think about it. But today? I can’t not think about all of it. How if I had a real fucking job that I could somehow find a way to get my bro out of there and into something better. I mean, anything would be better at this point. *Cries*

This is really scary for me to write about and put “out there” but I don’t know what I can do for him and if putting it “out there” might get me some advice, direction or whatever, then so be it!

So, my brother was misdiagnosed with ADD in elementary school. They had him on Ritalin for decades. A few years ago Kaiser figured out that he in fact has Asperger’s.  This explained a lot, they took him off the stupid, useless meds (Aspie’s do not respond to Ritalin or most meds it turns out) and he’s functioning like a regular dude. He’s had the same part time job for twelve years. He still lives at home because there’s never been another option.

He’s a generally happy and healthy 30 year old, except that he lives the most sheltered life you can imagine. He’s very creative and loves video games and is currently writing a fantasy novel (think dragons and knights and epic battles). He called me today to talk a blue streak about the upcoming Playstation 4 console and it’s possible capabilities. My brother is not allowed to use the internet. This seems to me to be the worst offense in a long string of ’em. They are stealing his fucking future! No internet means no connection to the outside world! It’s such bullshit, but there’s more…there’s always more!

Anytime my brother opens his mouth my dad and his wife, in unison, shout, “Shut up!” when I have spoken up and out about their treatment of him in the past (I cannot maintain contact with them, it is far too toxic and I do believe they are actually insane at this point) I get accused of all manner of horrible things. He is treated like a child and a servant in his own home. Mind you, his tiny paychecks pay for his own cell phone and health insurance. Yet my dad’s wife has forbidden him from calling me. He says about this, “Don’t worry, Sarah, I will always call you. I think of you more than as a sister. You’re my friend, too.” *Cries*

He does chores around the house everyday, he cares for the foster dogs they always take in (regularly about 5 dogs at a given time) and no matter what he accomplishes he is constantly yelled at and shamed. He tells me that they do awesome things for him, too, but has no examples to share with me. I get upset on the phone and shout at him, “No, dude! No, they don’t. They didn’t take you out for your thirtieth birthday, they didn’t even get you a fucking cake!!!” and I know when I get upset like this it makes him very uncomfortable so I stop and breathe a moment. They never tell him how awesome and smart and amazing he is. I sometimes wonder if I’m the only one who ever does or has. 🙁

They have done their best to convince him that he has a disability. Every time this comes up I insist, “You do not have a disability and don’t believe anyone who tells you that you do!” He has begun to question the doctors, some he’s met and others he hasn’t, about their various thoughts, advice and diagnosis (I’m so proud!). They applied for disability for him, but were denied. I am glad for this.

While I do believe that some sort of support and structure is best for him, I do not see how they treat him provides either. They tell him he is too old for cartoons (we like the same ones but he rarely gets to watch because of the parents) but they put parental controls on the tv without telling him and now he can no longer watch the sci fi and horror movies he used to enjoy. The few things he gets pleasure from are constantly restricted.

My deepest shame as a fat activist is that I believe my father has had the lap band surgery. I don’t know about his wife, but I don’t give a shit about her at all. She has done nothing but destroy my family and turned everyone against me with her lies. When the possibility of this lap band shit first came up my sister asked me to provide them with the resources and information about it so that they might not get the surgery. When I provided said resources and information to them without any personal thought or opinion, the response was a cold, “Thanks for your opinion, but we are doing this.” Kaiser was pushing them to get it and Kaiser won. I have no contact with them, but a recent photo of my father on Facebook showed a pale, ghostly face I can now barely recognize as my daddy. *Cries* It was their choice, they had the world of information at their fingertips and they made that choice.

My wonderful brother has the best attitude about all of this and keeps his sense of humor completely intact when I just can’t. My brother is 30 years old and believes his only way out is if he gets a girlfriend. He has never had a girlfriend, but his older and younger sisters both moved out when they had serious boyfriends so it’s no wonder why he believes this. I tell him as soon as I possibly can I will get him the hell out of there. I have been saying this for years, long before he even wanted out. I have to wonder if he thinks I’m just as full of shit as the parents are. I don’t want to think that, but I can’t help it now. Everyone in his entire life has done nothing but disappoint him, lie to him and treat him like garbage. How he remains positive I don’t know, but I am so grateful for every moment of my life that he does.

I cannot financially support him and his meager earnings couldn’t feed him at this point. I’m wondering if there is some sort of shared housing situation he might get into. He is physically healthy and active and strong. He takes direction well and can do almost anything if given patient instruction and example/training. He’s not as socially awkward as most Aspie’s can be, but often struggles with sarcasm (typical of Aspie’s). Most people find him to be friendly, polite and a bit charming. He smiles easily and laughs often, loves animals and gives people the benefit of the doubt always, even when it concerns or upsets me. I’m obviously the protective older sister.

Does anyone “out there” know what I can do or where I can go to get some help or information? I really don’t know where to begin but I cannot sit idly by stabby and heartbroken any longer. This helplessness is eating away at me and hearing him say how badly he wants out now, when previously he was ambivalent at best, is just the worst. I would appreciate any info you have or advice you could extent.

In any case, thank you for reading and supporting and always being there for me my lovely readers. I know things will improve, they just have to. <3

all I could do is tell him not to believe their bullshit, tell him he’s awesome and never forget it and insist that somehow I will get him the fuck out of there.

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8 Comments to

“My Shame & Pain: Seeking Help”

  1. On April 25th, 2013 at 1:03 pm E. Burden Says:

    Hell is having to watch people you love deeply suffer, and being able to do very little about it. I’m so sorry. But you are a connection, a deep one, in his life and you need to know that you certainly are making a difference.

    The programs for housing vary so much from area to area that everything has to be looked up specifically, it’s a mess, but even if he can’t do that, there is generally something. Room-mating, room-renting are cheaper alternatives in our area, but in pricier states, still astronomical. Another option might even be some kind of student housing program if he wanted to do that at all, but school is it’s own mess. Sorry I’m not more help, but the only thing I can think of is to list ideas or call his state services for a list of programs or to speak with someone about getting assistance for his situation. This is just terrible. I’m sorry.

  2. On April 25th, 2013 at 5:34 pm Hannah Says:

    A lot of the resources available are dependent upon where you live. I’m so sorry that you have to go through this, and I am so, so sorry that your brother is being treated this way. Do you live in the same area as your brother? You could call the county and get him set up to be screened for waivers. This would determine if he would be eligible for government funded housing. There are a lot of great group homes out there for high functioning adults (I work at one). Not all of them are great, but some are. I’d love to help more if possible. Shoot me an email: h m f o r n e y a t y a h o o d o t c o m 😉

  3. On April 26th, 2013 at 5:20 am Olivia Says:

    This is not a comment for public, but I don’t mind if it’s published. Please find a non-profit organization in your area that helps disabled people lead their lives to the fullest. In our area St. Vincent de Paul has a LOT of programs that help people all the way from completely assisted living, to very little assistance in group homes. My DH just said they’re now DePaul Industries.
    They help people find jobs that utilize their skills and are manageable (all the way from access via public transport to modified tasks to accommodate the employee’s strengths).
    Please know that there are good options for free/low cost help. I’m sorry your family is hurting

  4. On April 26th, 2013 at 8:32 am Sarah Says:

    I’m sorry you’re going through this. I would suggest looking up Autism organizations for what resources are available to adults with Asperger’s.

  5. On April 26th, 2013 at 11:18 am Amanda E Says:

    Oh my… thank you for sharing this with us. You are brave to reach out and share your vulnerability and you are a good sister to do so on behalf of your brother. I wish I had a relationship with my own brother(s) like that!!

    What comes to mind is… does it have to be an all or nothing thing, either you have the money to have him live with you or there’s nothing you can do? Could he come over and spend time with you once a week, or the two of you take a class together at a local community center (so that he can legitimately tell the parents he’s taking a class when they ask where he’s going)? Can he go to the library for Internet access, and if he needs support getting a library card could you do that? Could you help him find a couple of Meetup groups he could join to get out of the house sometimes? There are so many – writing ones, gaming ones, etc.

    Maybe this feels like a drop in the ocean right now… but everything you can do to connect him to the outside world and broaden his worldview beyond the narrow confines they’re trying to limit him to is a GOOD thing.

  6. On April 26th, 2013 at 2:20 pm Alena Says:

    I checked with the social work dept here on campus for possible resources. As one of your commenters mentioned, it can be difficult to locate the right type of social service programs and they vary from county to county. Here are some good ones in the area:

    Golden Gate Regional center is reputable NPO in San Mateo county:
    http://www.ggrc.org/index.php

    GGRC is sponsoring an upcoming workshop in San Carlos that might be useful: http://www.ggrc.org/trainings-a-events/2-events/140-transition-toward-independence-housing-for-people-with-developmental-disabilities

    Abilities United in Palo Alto offers independent living skills classes: http://www.abilitiesunited.org/page.aspx?pid=303

    Taft College offers an entire Transtion to independent living program: http://www.taftcollege.edu/tcwp/til/?page_id=17
    It’s near Santa Barbara, but if he wanted to live on his own asap, he could live in dorms or apartment with fellow students in the program. (I think there may be grants available to fund this, provided he meets the minimum income requirements).

    Finally, if all of that is too drastic, he could just join a meetup group for adults with aspergers. There is one in your neck of the wood:
    http://www.meetup.com/aspergers-siliconvalley/

    He might learn about other resources or strike up friendships at the meetup. Anything to get him outside the bubble and realize that there are other options besides having to live at home.

  7. On April 27th, 2013 at 6:29 am Rebecca Says:

    Wow. that’s awful. I’m an adult Aspie, and while the amount of help out there for adults on the autism spectrum is still pathetic, I have discovered some useful resources. There’s the Autistic Self-Advocacy Network at autisticadvocacy.org and GRASP (Global and Regional Asperger Syndrome Partnership) at grasp.org. There’s also http://www.asperger.org.

    I would not rule out calling an abuse hotline, because your brother’s situation really does sound abusive. Safe4all.org/resource-list has the longest list I’ve seen of resources for all types of abuse victims and people who want to help them. You also might want to check out the national Crisis Help Line (contactcrisisline.org/programs) which deals with all kinds of problems. The Domestic Abuse Hotline for Men and Women (1-888-743-5754) specializes in “non-traditional” victims of abuse like adult men. One of the things that abuse hotlines and organizations do is help people escape from abusive situations. I know this may sound extreme in your brother’s case, but if he’s so cut off from the outside world that he isn’t capable of getting help from anyone, then this may be a necessary first step.

    I think one of your biggest obstacles is that you’re trying to deal with this by yourself, and this is not something that ANYONE can deal with by themselves. Correct me if I’m wrong, but you seem to be distrustful of psychologists and therapists. Please try not to be. Being misdiagnosed as a kid is a VERY common situation for adults with Asperger’s, because when we were kids, no one knew that it existed! As I said before, the support out there for adults is still pathetic, but it’s much better than it used to be. I see a therapist for my emotional problems. and I can tell her all kinds of things that I’ve never told anyone else. If I told her that my parents were treating ME this way, I know that she’d do everything she could to help me, including helping me get away. If I told her that a family member was being treated that way, I can’t imagine that she would do any less.

    The biggest problem seems to be that your brother cannot speak up for himself – not because of disability but because of his living situation – so you’re going to have to speak up for him. That’s the one thing that you CAN do on your own.

  8. On April 27th, 2013 at 11:54 am Not Blue at All Says:

    Rebecca: Thank you so much for your kindness and support. It’s not that I’m distrustful of therapists, I’ve just never had access or opportunity to see one. I do appreciate your input and may be contacting you soon. <3

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