I often talk about Nato here. He has Down syndrome. Today I’m going to tell you that for the last 3 weeks or so, the Department of Human Services in our new home state, is investigating me for “adult abuse of a protected person.” I must be a very bad parent, let alone a very bad person, right? That’s why when his father walked away from his 5 children to concentrate his life around… what else, him, I carried on and haven’t dropped the reins yet. My children are now 38, 34, 32, 31 and 24. I’ll always be connected to them, but I didn’t expect to be doing intensive parenting at the age of 62!
In Montana, once an adult with disabilities qualifies for Med. Waiver services, there is a 7 to 10 year waiting list. Yup, seven to ten years. Apparently the operating belief is; if the disabled person is doing well at home, let them wait. Yet my son who’s been known to yell when upset, has been yelling with more volume and ferocity since we’ve moved. He was diagnosed with depression by the mental health agency I found here. I think he reacts in this way when he’s unhappy rather than depressed.
To give him a life here; I’m paying for him to attend day programs. Since we’ve increased his schedule- to make Nato happy, from 2 days, then to 3 days and currently 4 days, one of his siblings is helping to pay. He attends YMCA programs 3 afternoons a week; for an hour and a half each time. He is training for Spring Games, Special Olympics. He’s working with a great guy at Vocational Rehabilitation for the purpose of getting and holding onto a part time job doing what he loves; cooking.
Next week we meet with an Independent Living Counselor at a local center for Independent Living, so that they can help him learn “roommate rules,” one of which will be; don’t yell when you’re upset. So you want to know how/why I’m being investigated. The day AFTER a yelling spree that went on [and off and on, etc] over a whole day, I took him to the mental health agency we’ve been working with, to press them for some relief. I may have said something that could be taken the wrong way. I guess I had my own little temper tantrum – after which I walked out in the hall and broke down in tears. Did I get help? No.
The local government agency’s rep. seems to be worried I’m not a good parent – and/or abusing my son. Frankly I think they’ve got it backward. He abuses me with his yelling/screaming. In disability circles we talk about re-directing our children’s behavior. This means trying to turn their attention onto something else. When my son is in this mode though, there is no way to redirect him.
Today I called the mental health agency and spoke with the director. You know for an agency that’s supposed to help us, I find it [cue up Twilight Zone music] odd to say the least, that Nato’s “care-giver” is the one indicting me and possibly his case manager was aware of the complaint before I was told. Meantime they want a meeting with us, but our schedule is too busy and I would prefer not working with them anymore given the “help” we’ve had so far !!!
Did I mention it was his “care-giver” who drove him to the secret meeting with the DHS woman? And he was in a room alone with the DHS woman- a COMPLETE stranger. Can you envision your child, no matter their age, with significant disabilities, ALONE in a room with a stranger. Right. As if a person of standing has never done bad things to a child or disabled adult.
The DHS woman called me again today. The home visit that lasted for an hour and half, digging into many aspects of my life wasn’t enough… Accusing me of being a controlling parent – well what can I say? Of course I control our lives to a certain degree. And because I do, my son now finally, 6 months after moving here, a brand new place for both of us with a multi-year waiting list, despite all this, Nato has a full schedule that is making him happy.
Oh and I devised a positive reinforcement system, to use with him, and he’s already gotten 2 games and a movie as a result. (He earns one when he’s had 3 to 6 good days). Since the mental health folks weren’t offering any help I researched and came up with my own solutions.
So, now this DHS woman says I can’t “control” Nato, in order to disassociate from the help we get from the mental health agency. What help? I asked. I’m doing it all. I’m finding other ways to work on this issue. I’m sorry I cannot trust someone who is supposed to have my child’s best interests at heart, then reports me as an abusive parent – because what? I’m supposed to sit at home and wait until they come up with a solution? Or allow them to MANIPULATE my son into a room alone with a stranger so that he can agree I’m an abusive parent?
Our spiritual leader found some assistance for me. Several hours of cleaning house did nothing to take away the higher blood pressure and headache caused by this morning’s judgment of me from the DHS woman. She told me she knows how a parent can influence a child’s decisions. So, another accusation against me. At any rate I called the number our Rabbi gave me, and spoke for almost 20 minutes with the state bureau chief of Adult Protective Services.
There’s some hope that this time I’ve been heard. Apparently he tells me they have 90 days to resolve this brou-ha. That leaves me about 70 days to find out if Big Brother has arrived, and they take my son out of our home together, or if we’re allowed to go our own stumbling way into the sunset. This is truly a nightmare.
Let you know, when I know. (Photos; top, Nate’s heart, middle, baby birds in the nest, bottom, Nate on right with Bob) And yes, Nate stitched that heart all by himself!