In Max’s life – “Another Brick in the Wall” translates into “Another Roadblock in Life”. The constant assaults on his individuality and integrity and personhood continue. It’s moments like this, that I wish I could sit across the table from Max, we both drinking a beer, while talking and laughing “about life”. I want to hear about his hopes and dreams. I want to know how he’s really feeling.
Then I’m dragged back into the reality of it all. All of this real-life crap that surrounds him. It’s been never-ending bullshit lately. I’m feeling powerless. I hate that feeling, and usually when I get to this point (it does happen sometimes), it spurs me on and makes me even stronger… eventually. Ha!
I meant to post more regularly (I have a lot to say) – with proof that Max lives and not merely exists in a world that doesn’t recognize his humanity, but life can be cruel. I got distracted by “life”. I had to take some time to re-group and make contact with people in-the-know. This is how it is when you have a child/adult with multiple, more severe disabilities. Networking and finding resources are EVERYTHING! It’s a fact in living this kind of life.
I know that it’s been awhile.
This week I visited him in his group home. When I walked in, he was sitting in front of the tv in the common living room. Two other people were sleeping in their wheelchairs. He was slumped in his wheelchair and needed to be pulled up. No one noticed except me. He was drooling so much that the front of his shirt was sopping wet. He had a look on his face that suggested he was disinterested in whatever he was suppose to be watching on tv.
At first he looked at me, like he really wasn’t seeing me. And then, he smiled as I used his shirt to wipe the drool off his chin. He needed his hair combed. He smelled. He only gets a shower on 2nd shift every day. Apparently, it doesn’t matter if he gets up in the morning, after having a bowel movement and sweating all night, that maybe someone should have given him a good bed bath in the morning?
I guess that’s not a part of the routine in this group home. It’s probably that way in most, if not all group homes. They’re very big on following the routine for “the whole”. There is no individuality in that regard. Or maybe it’s all about who is verbal and the loudest. Therefore, Max is not verbal and not the loudest. Max is also non-ambulatory, so no one has to go after him if he runs. Then it becomes survival of the fittest. Did you get that?
And I learned yesterday, when I contacted his “support coordinator” through email (I like creating paper trails) that they’re all about discouraging me from commenting, suggesting, complaining. She said that staff did engage him throughout the day but went onto say that basically, he “couldn’t have all their attention all day”, etc.
I want to make something very clear here. More times than not, it’s not the staff that is the problem (although there are those few). In fact most care providers work short-staffed, and are forced to work long hours – mostly 12 hour shifts – for very little pay (that needs to change). I’ve seen them exhausted and disrespected. I also know that they have their own families. In Max’s case, more than a few of his care providers have included him in their own family gatherings, and I’m grateful for that – as he has no close family living near him.
My problem is with the company that they work for and their managers. My problem is also with the local CMH who should be monitoring his care and working in partnership with myself and keeping me informed. They do the opposite. Where they should be diligent in their oversight and transparent, they avoid any communication with me unless it’s absolutely necessary. They don’t continue to educate themselves and they can’t see another way; the way that it’s suppose to be in creating a safe, happy, meaningful life for my son.
I’ve been stonewalled. I never see anything documented in his notebook and neither am I offered a look-see or a verbal report. I don’t get to hear, as in, “today we used small toys for Max to pick up and drop into a container, to maintain/increase his fine motor skills”. There’s no running commentary, ever.
They inform me of NOTHING. All I know is that every time I go over there, he’s sitting in his wheelchair doing nothing, except watching tv. Or laying in his bed watching his tv / listening to talking books (which I set up for him with the Library for the Blind). Note: I told the group home manager that books on tape could be easily acquired and set up for all the residents there (it’s FREE), but did that happen? No.
Every observation/comment that I made in writing in this email was countered and I was basically called a liar and my concerns belittled or questions unanswered. I WANT to reply back…. but won’t because it’s wasted energy and it’s all frustrating the hell out of me right now. (I need to think about how to effectively deal with this.)
She said Max didn’t smell… Believe me, he did. Perhaps,“that smell” is normal for her in the group homes that she visits. She only sees Max for 15 minutes 3x month. And NOW I know that every time she sees him, she doesn’t really “see him”. Excuses. They all have these pitiful excuses and I’m made to feel like I’m an unreasonable whiner. Fuck that.
I know “they” (CMH/Group Home Management) wish that I would go away and not visit him at all. I know they wish that I would just shut up and not care and let them NOT do their jobs; that I would be like other family members who drop of “their person” and walk away.
But I won’t. Fuck them.
Max received a Dynavox Tobii. It’s all based on eye-glance. Think of what Stephen Hawking used to communicate. Someday he WILL tell me what’s happened to him and what his wants, needs, hopes and dreams are. Someday he will have his OWN voice, and there won’t be anymore cop-outs, lies or manipulating from other people who would continue to get in his way of being self-determined.
When he starts using this, over time, he will get better and better. It may take a long time and I’m sure that both he and I will be discouraged – if staff isn’t trained and/or refuse to make this device accessible for his use (Dynavox Rep and SLP are coming to his home to set up everything, program the device and train staff) when I’m not there, but you know what?