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.    Nate's Heart

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. BirdInNest2014-2

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.   N and Bob 2009

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!

My earliest memories of family, not tied to photographs, of my family are 2 mental images; one is the 1950’s living room furniture in our house that was like a showroom, not a LIVING room. (Well my father was in the furniture trade!) The second is when my sister and I were both sick with measles or chicken pox and my father still wearing his overcoat carried up a pile of board games for us to play to relieve the sickroom tedium.

EveryChild

My mother will tell the story of how she left me in my carriage, outside one of the shops along the main road, a block walk away, and she walked home only realizing [when???] that she’d left her baby. There is also the family story of how I got lost on the beach in Atlantic City and a mother grabbed me, knowing my mother would find her and I. At the time I was about two years old. So this happened 16-18 months after the first incident.

Growing up, if asked about my family I’d mention my parents, who both seemed distant, and my grandparents who meant the world to me, and my 2 sisters [mixed feelings]. And I should mention Catharine, an African-American woman who cleaned our house, ironed tablecloths [and whatever else], and walked me to school and back in the early grades. She and my mother watched As the World Turns on our black and white television each day about lunch time. And her husband acted as bartender when my parents had parties. All this was confusing to me, perhaps because Catharine was not a family member but took care of me and I felt her caring.

Blessed

There are tangible things I took from my years in my parents’ home and determined to NOT do these as I became a parent. I would not punish my children with a hairbrush or a belt, or by locking them out of the house. I would talk to them; explain anything and everything. I would talk to them about sex, not the mechanics so much as dating and partners and intimacy. And about money and careers and choices.  Through a work conference I learned about choice-making and how to encourage children, so that they can grow to be autonomous human beings. (Autonomy: independence, living by one’s own laws, from Dictionary.com) Overnight I changed my parenting style and feel rewarded by the results in my adult children, and now my older grandson also being taught to make choices, and face consequences.

I wanted a large family with my spouse; and have 5 amazing children. And then I found myself unexpectedly divorced due to my spouse’s desire for greener grass, so to speak. The partner I married who soon after realized my family of origin was not very supportive to me, promised he’d always be my family. Well sometimes always is shorter than you think. And recently in the last 2 years I have cut myself out of my “family” of origin because I wanted to stop the cycle of hoping and feeling disappointed, hoping and disappointment, that occurred with these 3 remaining family members, who, like the girls in middle school; have formed a clique and I’m not part of it.

Pinned

Yesterday the auto service shop owner belittled me and ridiculed me when I insisted that a verbal contract for the cost of the repair of my car [for $800.] should be upheld despite that he did not include sales tax in his estimate, since he gains nothing by collecting tax. Also, he did not anticipate 2 bolts needing to be replaced (2 bolts cost $12., imagine!) and some unexpected welding work. Instead he argued I would pay the additional 16%, or $130, because I owed him. And while standing there trying to remain civilized and adult– I had a flash of deja vu. This – this ridicule, this lack of acceptance of who I am, my honesty, my intentions in life, are EXACTLY why I stopped all communication with my family of origin.

So who is my family? I learned after the divorce, in those frantic days with 5 children the first year, then four kids for 4 years after that, etc, etc, that a dear friend could “kvell” [show pride] in my children’s accomplishments, and give me time to talk about them as I might if I had a co-parent. I learned that my friends, if I chose carefully, could remember my birthday, would call to check on me, invite me out for coffee or lunch, or help me work through a difficult problem or decision. My children are involved with me to the extent they wish and I don’t cross their boundary lines. And I’ve been trying to move geographically closer to my older grandson for 2 years because we have a bond since his birth in my living room 8 years ago, and I want to be more than a Skype Grandparent.  SingOutLoad

Not least in this summary is the place of my middle son; he who came into our family with Down Syndrome, later also diagnosed with severe speech articulation and now at 31 years of age wearing hearing aids so that he can hear properly. He was not supposed to live at home this long. It was not in my plan for his independence, but plans change. Divorce happens, poverty often occurs for women after divorce who are single-parents. I had the choice to go back to college, and felt a better choice was to work and earn money immediately to make ends meet. And Nato has been my roomie through all these years. With our next move he will perhaps have his own home, no matter how humble, and yet we will still be family; helping each other with practical matters, and watching funny videos together so we can laugh out loud like grinning fools.

**Card sayings from top: 1) Every child begins the world again… 2)Blessed is the influence of one true loving human soul on another. 3) Just don’t give up trying to do what you really want to do. Where there is love and inspiration, I don’t think you can go wrong. 4) Sing out loud in the car even, especially if it embarrasses your children.