Disability Awareness & Advocacy, Uncategorized

Down the Rabbit Hole – Lost, Dazed and Confused and yet…

Just when I think that I can’t take one more step forward, and that I’ve exhausted all avenues of escape for Max, there’s a glimmer of hope. When I say “escape” for Max, I’m talking about him having a good to great to excellent quality of life. That means to me his ability to “get out there” and have fun in the community, while he explores different areas of interest.

I’ve been in the trenches the past few weeks… or maybe more like in a fox hole, fighting with myself, while I fight with others.

EndhazomGurl

Why can’t they just do their fucking jobs? Ugh. It’s ridiculous.

More so, it’s insane that I have to FIGHT for what’s RIGHT. And I hate what this is doing to me as a human being. But more so, and this is THE most important thing – What it’s doing to Max.

I’ve been wavering, which is exactly the opposite of what I should be doing. But this is what happens along the way when you have a child/adult like Max, who is so disabled. It makes you weary and you have to take the time to re-coup.

It might “appear” (to others) that Max can’t do or communicate anything and therefore, nothing is expected. You know…. like…why don’t I just go away and STOP advocating for him? Why don’t I let the locals “be” to do basically nothing but warehouse him?

Is it because I’m a tenacious bitch? Or maybe I’m just here to make them do their jobs and make their lives miserable. Could be (kinda).

But no. I do what I do because it’s the RIGHT thing to do.

I’ve tried repeatedly to educate these people. For over three years I’ve brought up all kinds of issues. I’ve talked about his rights, the rules. I’ve been snarky. I’ve been nice. I’ve tried to come up with (reasonable) solutions and I get nothing in return.

I’ve tried with state advocacy organizations and apparently I or Max either live “outside” their jurisdiction or Max’s problems are not the type of problems that he can get support from them with.

But I keep moving forward, telling his story over and over again. I’ve tried to rectify his issues, while trying to keep the fires from raging to keep him from being burned.

And what was that about the “squeaky wheel gets the grease”. Sometimes, yes…. most times no – unless you find the right person.

I’ve now contacted his state representative, who sent me a HUGE packet of information to glean from. I LOVE searching through RULES and REGULATIONS and LAWS!!! To me that’s like the “key to the kingdom” of FREEDOM and LIBERTY for Max. It’s ammunition. It’s like being able to put that last puzzle piece into place and having a true work of amazing and beautiful art in front of me – created from all those little misshapen pieces.

I’ve been in contact with the Office of Recipient Rights, and there is an ongoing search for information (and hopefully a quiet investigation beginning? ).

And I’m still waiting to hear from another person at the state level when it comes to the question of Self-Determination and Max’s lack of that being offered.

I’m growing inpatient and I’m not sure at this point if the attention I’ve gotten (through email and phone) has really accomplished anything, other than temporarily placating me. We’ll see.

I thought it all was beginning to move forward….

And yet…. within the past 48 hours, the local DHS just tried to cut Max’s Health Benefits off. Can you believe it? For now, he’s safe.

I’ll write about that in my next post. What a shit show. Oh well, the ACLU is already in the county here, dealing with some other outlandish, discriminatory bullshit, so how convenient is that?

Off to war I go….

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