Paying attention: My middle son with Downs now wears hearing aids, which makes me sad, because it feels like another sign, along with the streak of silver grey in his hair, of his rapid aging. This is common in folks born with Down syndrome. The other recent change; I’m frequently telling him to “pay attention.”   NateRobot

Bearing witness: I was telling a friend about a movie I’d seen -based on a true story- of the war in Afghanistan. She asked why I would see something that disturbed me so much that  I had to close my eyes several times to get through it. For me it’s about bearing witness to events in our lives that are so momentous, we need to be aware, be involved, pay attention. Bernie Glassman says; “We bear witness to the joy and suffering that we encounter. Rather than observing the situation, we become the situation. We became intimate with whatever it is – disease, war, poverty, death. When you bear witness you’re simply there, you don’t flee.”

Elie Wiesel: In an online search with the phrase, bearing witness, you might find billy’s blog,  you will certainly find many items about the Holocaust that decimated the Jewish population in Europe during World War 2, and photographer Lisa Kristine’s  TED talk about modern slavery. And many more subjects beside those mentioned. Learning about the Holocaust was an important part of my religious school classes as a teenager. Yet to learn of how we humans treat each other, is to know there have always been holocausts and perhaps always will? I sincerely hope not.

Friends and enemies: This is an Elie Wiesel quote, There are victories of the soul and spirit. Sometimes, even if you lose, you win.” In light of facing a former friend last week, who along with several others I’d met, worked with and socialized in a religious context,  have shunned me because their leader has shunned me? Maybe. Seems odd that intelligent people can’t make up their own minds, but hey, what do I know? It is harder for me to believe that though I lost so-called friends I’ve still won… but maybe knowing I’m true to myself, my friends, the people I love and care about is a win for me.     RowanLegos

Gratitude and hope: I live in the land of joy for my life, the hope, sorrows and absurdities that occur while taking each day as it comes. And the mingled joy and and difficulty of the great task of caring for my Nato. The gratefulness for sunshine, trees in leaf outside my windows, breath in my lungs, our cat who likes to cuddle with me, my grandson building legos to conform to imaginary things… Mostly grateful for life.

And here in closing; one last quote by Elie Wiesel; “Look, if I were alone in the world, I would have the right to choose despair, solitude and self-fulfillment. But I am not alone.”

If only we could be good and kind to one another…

 

 

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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!

We left Iowa for Montana at the end of August. We’re now living in our own, small, home. Small means you have to be more ruthless about your belongings. I’m thinking of adding a few shelves on the living room wall and then rotating my art and tchatchkas [knick-knacks] so to have something new to look at, to inspire. It’s that or get rid of very dear art and objects. Not ready to clear out any more at this time. I like the notion I’ve come up with– at least for now.

The pine tree I planted in Iowa 4-5 years ago, survived a rough winter.

The pine tree I planted in Iowa 4-5 years ago.

Living in a motel for a week was … interesting. It was very well run. The people all kind, friendly, and dealt well with each of us; Nato and I. We’ve been in our new home for a bit over a month. We can look out the living room picture window and stare at the mountains, the sky, the clouds. When we drive out and down the hill or just around town, the mountains guarding our city are ever present, majestic, intriguing, timeless. I still wake up, look outside and feel surprised to remember we’re in Montana.

Looks like getting services for Nato will become my next occupation. Becoming involved on a local level; talking to people, starting a parent support group, finding folks who will take a little time to include Nate in their lives for a dinner or an activity. Then there is the state level; lobbying our legislature to become informed how their policies affect adults with disabilities who often cannot work at all, or who need a job coach and/or job slicing in order to work. (I just made up the phrase; job slicing, because there actually is one to denote taking a job and breaking it down into components and then hiring a disabled adult to do one component. I cannot remember the new technical term for what I’ve described, but it does exist!)

A Special Olympian winner - and a sweetheart.

A Special Olympian winner – and a sweetheart.

Those of you in the Y today, or in our neighborhood a bit later, who heard my son having a loud time… I apologize, but could you please not look so shocked? He does the best he can – but he’s not made to live an idle life. There’s only so much sitting he can do before he becomes frustrated. And the great state of Montana is ruled by legislators who have taken a very, VERY paternalistic attitude toward developmentally disabled adults. If they are in a safe place, even living with elderly parents, then they don’t need any public services such as a life skills coach, job training and support, or even transportation to social events in the community.

Imagine if you couldn’t drive, couldn’t read, couldn’t handle money [because you don’t understand any numbers/math], perhaps couldn’t call someone- a friend or family member on the phone because you can’t operate the dial pad… and there is nothing for you to do all day but sit in front of a television set? It gets old and boring very quickly. And the person doing the sitting vegetates. There’s no stimulation, nothing to get excited about, practically no reason to get up each day. That is what I hope to change.

Meanwhile I’m grateful for our new mountain home, and the friendly folks we’ve met so far, and the many more we hope to meet, work with, and get to know as friends and neighbors and co-workers. So, as I said in the title, life is weird, ornery [the temper tantrums] and beautiful. And bittersweet, as we both miss our midwest friends; Katie and family, Peggy and family, Leo, Niki [Nate’s college friend and all her buddies who became N’s buddies too], neighbors, and friendly acquaintances. All Nate’s friends at Hand-in-Hand. We miss you so much.

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.

 

Do I believe in coincidences?  (Do you?) Is a coincidence a cosmic intervention? A nudge from God? Then again, does it matter? N and Bob 2009Here’s one. About 3 days after we moved here, we walked into the Health Foods store and Nate saw Bob washing dishes in the open kitchen of the deli. “My friend,” Nate said. Then Bob’s mom came over and introduced herself and I thought, “my friend.” And we all made it so.

This morning I found a note that James had read/enjoyed the post I wrote and published last night. So I went to his blog and read.   The horrible anger that  came over me in a wave when I awoke this morning was relieved by his mention of meditation. So I washed up and put down my mat, did some stretching and then sat to meditate. I remembered James’ suggestion to pose a question, but after a few seconds I decided to craft a statement with which to pin my attention. It just came to me. Out of the blue? Coincidence, divine intervention? Here it is;

I bring love in to me. Wow! Where did this come from? I believe it came from my deepest yearnings and was the cause of my anger; that someone who, by way of our L and Peggy 2009familial relationship, should love, honor, respect me but I feel, and others have observed that instead there is ridicule and judgment and game-playing.

And so, by my action I brought about another piece in the puzzle of understanding myself. I checked in to my facebook page.   I like keeping up with my children and friends, but I really like the odd bits I’ve accumulated on my page. The “coincidence” was a story with a poem, below,  that has been making the rounds for the 5+ years since Bob Perks first wrote it.

I wish you enough, by Bob Perks, 2008

I wish you enough sun to keep your attitude bright.   I wish you enough rain to appreciate the sun more.    I wish you enough happiness to keep your spirit alive.     I wish you enough pain so that the smallest joys in life appear much bigger.   I wish you enough gain to satisfy your wanting.     I wish you enough loss to appreciate all that you possess.    I wish you enough hellos to get you through the final good-bye.

Thanks for visiting my blog. Please feel free to write to me, I get lonely.

Photos, spring 2009: Bob [left facing camera] and Nate [right].  Bob’s mom, Peggy [left] and me [r].

Ever have a terrible start to the day? Here’s what happened this morning;

My art studio is packed in hopeful expectation of our move. In the meantime one of the retail outlets selling my cards, is in need of more cards. I thought I would … just stop. But the impulse within me to create hasn’t stopped. So I scrounged through the 2 medium storage containers I’d left out, and yesterday managed to create 3 new cards. In fact I left them on “my” end of the dining table, so that today I could create more, of different colors and styles, hence why they were left out.

This morning I found the cards had migrated to the middle of the table, and there was a pen nearby. I knew with nothing more than intuition and knowing my son, that something had happened. Inside two of the three cards, he had written messages to family members.
CardJuly31- 13
Aw cute? Not really. I had spent more than the usual amount of time finding the right combination of scarce materials to create pleasing collages. I ranted and raved at him for about a minute, cried in the bathroom for 20 seconds, and then just sat in this chair for awhile, staring into space.

There have been plenty of incidents/ mistakes over the years of my life. Some I’ll own up to, and some as the result of others that have impacted me. And no matter that my mind goes to the biggest ones, like probing a sore tooth, there is absolutely nothing I can do to change my history or the events that occurred in the past.

And would I want to change my past? In my growing up years there was a television show called; The Twilight Zone. But that’s not where I want to live. I’m present in my here and now. I own all of it; carelessness, cruelties, bad judgments, misunderstandings, etc. And mistakes. All because there is a flip side to all of these negatives.

Like two sides of a coin; like right and wrong; the other side of a mistake is some lesson. Here’s a great quote I use from time to time; “It seems necessary to completely shed the old skin before the new, brighter, stronger, more beautiful one can emerge…I never thought I’d be getting a life lesson from a snake.” Quote by Julie Ridge. I also know things don’t fall into categories easily- there are many sides to a story, a problem, a lesson.

I believe there are some occurrences in a person’s life that cannot be written off as having a “positive” side. This morning I read about a rape victim who is fighting a custody battle with the rapist/sperm donor who petitioned for his rights as the father. This is a crime that gave her a beautiful child and love, but has irrevocably tied her to a person who forced an intimate and evil act on her.

By comparison, my son’s act is very small potatoes. Easily rectified. Really. I will cut and paste- sort of- and not be completely happy with the results but do it because I want to, because I can, because ultimately it is not worth raising my blood pressure, or getting more gray hairs over this small thing.Card2July31-13

And now I realize; it is a lesson for me. About where I expend my precious emotional energy. And about how much responsibility I take for my son’s actions- when his actions are his, and not inspired by any of my teachings or examples. Ultimately, his smaller brain size, due to Down syndrome, means a lessening of his cognitive abilities, including judgment. Sigh. Deep breath. I’m headed out for a walk to clear the cobwebs especially after letting the morning slip away from me. Nato’s out of the house with a care giver so I’ll make the most of my alone-ness.

*Top picture of new card, bottom inside of card; a love note from Nato to his sister.

This is a story of 2 people I’m acquainted with and also a story about World Peace.

First, my young friend just 18 years old as of last week. I haven’t seen him in two years, and he’s grown taller, and grown up a bit too. What made me think to include him in this post; he and I are far apart on many issues; what we eat, what we believe, what we do for fun… as any 2 people can possibly be. Yet we also worked together for a year and a half, and had fun together. He introduced me to the tropical fish store, I tried to convince him that my preference for working in a quiet room wasn’t too freakish.

For a year and a half we worked very diligently on his reading and writing skills; no easy feat given the severity of his dyslexia.  Our lessons were imaginative and enjoyable, and felt only a little like work. He willingly let me use my imaginative lesson plans because he knew I meant only the best for him. My deepest wish; him reading/writing without embarrassment.

Extra Chrom-Nate 2013

I smiled a lot during the  accidentally meeting. I smiled after we parted and until I went to bed and even into the next day after I awakened. He has a sweetness to him. His mother cares for others, as a career, and he has grown up with children who are disabled, so his acceptance comes easily, naturally.

The second person is one who works full time in a governmental office to which I show up once a month to do a small amount of marketing for a major U.S. company. She serves others from behind a counter and often has biting comments. My observations of her demeanor led me to maintain minimal contact, until this morning.

Today I was denied access to her supervisor who is usually on site. My work supplies were not ready for me. Over the last year and half, they’ve been slowly encroaching on my job responsibilities, for which I was trained and continue to train on an ongoing basis. My supervisor suggested personality conflict. No, I think it’s conflict over territory.

So now I will be replaced there, lose that small amount of income, and also lose the assured sense of having done my job well and in a timely fashion. I had gone in with a plan. But it all went wrong. The supervisor would be out, out, out. I walked outside, made my phone call, and went back in to get the job done. It was then I heard this employee in her supervisor’s office with murmurings and laughter, and lots of “I said… and she…”

I don’t wish to be near nasty  people; people who need to make you small in order they feel big, people who do wrong for reasons known only to them and who cannot make an apology. So where does World Peace start?

World Peace starts with me and one other. That other could be you. It is my next door neighbor even though her partner plays very loud music outside that drifts in through my screen door. It might have been the employee behind the counter, but no, sorry, I can’t compromise myself in order to be ridiculed, so I opt to step away.

World Peace starts with my inner peace first, shortly followed by my willingness to be at peace around others. It’s the best I can do. And as a mother I remember that I am the model for my children, so why not for people in my world?

World Peace also starts with you, doesn’t it?

**Picture of my Nato- who rocks the extra chromo, according to dear friend Tony!