A friend said to me; You’ve been your son’s only parent for a long time. How old is he now? I replied; He is 33. She said; That’s like a marriage. Well, not really. He is my son and one of my 5 adult children, but unable to go out into the world on his own. His other parent stepped out of his life 13 years ago. And really what other choice did I have? He is my son and he requires aid.

I believe we have choices in this life… and I have tried to choose on the side of loving kindness (chesed) and with the thought in mind; what would I want if I were in the position of needing help in order to live my best life?  NateBowlingTrophy2013

Holidays have been difficult times for me. I miss the noise and bustle of my children when most of them were home. Yet I remember wishing for peace and quiet, which has only come since they’ve all grown up and left for their own, independent lives, away from me. Ironic. Beware what you wish for, it may come true and then you wonder; is this truly what I wanted after all?

And much to my chagrin, I once told a friend I couldn’t deal with too much of her “wonderful marriage talk” because I haven’t had that option. I am — have been alone for 21 years, a considerable length of time. Of course I haven’t been alone at all. I raised each of the 4 others until they turned 18 and stepped off the edge of the world of childhood and into the pool; of life as an adult. Only my Nato remains and he currently has a busier life than I do.

I now have the somewhat idle life I dreamed of through the years I had to be 2 loving, sane parents to my children. Those were the days I had to have unlimited patience and tolerance, and keep a “clean-enough” house and work outside of it to pay for necessities of living; clean underwear, auto insurance, mortgage payments, summer camp. Now I am my son’s calendar minder, appointment setter and chauffeur and not least; soother and/or interpreter of his temperamental outbursts.

Living can be messy, contradictory, full of anguish, a time/place when dreams are so far away as to never be obtainable, yet it is also so many other things; our one and only life to be clay in our hands, filled with the awe and wonder of nature at best and worst, and everything, anything, in-between. CardJuly31- 13

What I love most about living is the wonder, the unexpected joyful moments, the gratitude that drops on me like a soft gauzy curtain; not obscuring reality, but reminding me of the worth of unexpected joy especially in the midst of a life of service to another.

I choose service because the options are not affordable. Neither to “place” my son with strangers who may not be patient enough to allow him to be who he is, and hope they use gentleness to curb his extremes, nor… But there is nothing else.  I have looked high and low. I could send him to another state far away, depend on financial assistance, take out loans, bankrupt the rest of my life, and again hope that strangers will treat him with dignity and credit him with knowing what he wants, but none of these are options seem right.

And so, life is both the past which is already written, and the present which we live moment by moment, and the future which is ephemeral, a dream, a hoped for unreality perhaps awaiting us, perhaps not. Nato and I, are I think, engaged in each living the moments, occasionally laughing at each others jokes, and what I’ve come to realize; enriching our days with the presence of the other. And thankfully we each have our art, we have music, we have laughter…

I want to end with a poem by W.H. Auden, entitled September 1, 1939.

And no one exists alone;
Hunger allows no choice
To the citizen or the police;
We must love one another or die.
*       *       *       *       *       *
Picture of Nato with bowling trophy, and handmade card with saying by Bob Dylan; May your heart always be joyful, may your song always be sung.

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!

Note; I had planned a follow up to the last post, and even had it half-written, but changed my mind. So instead here’s what I’m thinking about now.

From painter Chuck Close on creativity, on the blog BrainPickings.org. (What a great name!)  KnitTangle10-2011

“See, I think our whole society is much too problem-solving oriented. It is far more interesting to [participate in] ‘problem creation’ … You know, ask yourself an interesting enough question and your attempt to find a tailor-made solution to that question will push you to a place where, pretty soon, you’ll find yourself all by your lonesome — which I think is a more interesting place to be.”

I’m not going to write about creativity, but about asking yourself questions and trying to figure it all out. Figure what out? Your feelings. From the same site mentioned above, a post about a book titled; Lost Cats: An Illustrated Meditation on Love, Loss and What it means to be Human. In the last chapter the author writes; “Every quest is a journey, every journey a story. Every story, in turn, has a moral.” She believes you can’t ever really know anyone, but no matter, because; “love is better.”

In the days I think of as “hectic parenting,” a year after my marriage imploded, when  I worked on Extra Chrom-Nate 2013finishing the job of raising my children alone, I went on a journey of delving in to understand myself. One of the hardest tasks in my new life; having no partner to tell the stories to at night, or to share reminisces, or to hold and be held- to be loved [and of course love right back]. The moral of my story then was; she managed, she found within herself a strength to find alternate answers, to accept her children’s love, her friends’ love, to explore with her writing and to run and swim and find nourishment in those exercises for both body and heart and mind.

It’s now many years later. My role of full-time parent has diminished as the artist/writer has bled through and now takes up more space, more energy. Yet always the task of understanding myself persists, perhaps because nothing stands still, all things change. I don’t sit back to watch the change, I immerse myself in attempting to understand. I’ve been writing stories for my children, so that they can discover who I’ve been, am and what I’ve done. Because they’ve only known me as the person who taught them things, or cooked their meals. I want them to know me as I’ve come to know me; a person both limited and limitless, full of love and flawed.

"Centered" a work by Nate and his mom.

“Centered” a work by Nate and his mom.

Last week my youngest son, who spent the longest time with me, except for his disabled brother who is 31 and still with me (as a roomie now) gave me a gift. My children gift me mostly with words, which is pretty wonderful, but I have to say this gift; words plus a tangible thing I’ve always wanted, was a sort of proof that I am appreciated for what I’ve given all these years. And that I’m loved. But already I knew that last bit because he and I have been expressing it to each other forever.

Words are important, more than gifts. Gifts break, die, get lost or returned, but words echo. I am now a confirmed bachelor- or the female equivalent, whatever the terminology. I would accept as much love as I’m given and return it happily, but do not trust myself to make a good choice. Rejection several times, by several people closest to me has left me with a desire to no longer be hurt by someone who says they love me or used to love me.

Today he and I talked by phone to catch up. We talked about meditation. For me knitting and swimming feel natural as a meditation practice, PieceBlk&Wht and sometimes when I create a collage too. I spend a lot of time in my head, I guess because I spend a lot of time alone. Good thing I like me. (Can you see my grin?) Lately a lot of garbage runs through my brain; such as why doesn’t X love you, why are you unworthy, why haven’t you accomplished more in your life, etc, etc.  I’ve been combating the negativity by employing my homegrown, “just say no” philosophy. When I catch myself caught in a relentless bad-thought loop, I tell myself to stop. Admonish myself. That’s the “just say no” part. I don’t allow myself to continue. I’m not very good at sitting cross-legged on the floor staring into the abyss of nothingness, but I find quiet in my own way. Along with the quiet I try to find love and compassion for myself. It’s the only way I can live.

Lastly, a great article on TreeHugger.com about knitting as therapy felt like confirmation, so I’ve added some pictures of pieces of my knitting- top and bottom. The middle pictures; one of middle son and one of his stitchery with my “framing” and added bits and bobs.

Thanks for visiting.

Here’s a small bit of my friend, Peggy’s story. I met her 4 years ago; 2 moms, each with a son with Down syndrome, finding each other in a health food store. How could it NOT happen? Peggy’s daughter died in a car accident about 12 years ago, leaving 3 boys without a mother. Two years later fate left them without their father, due to another traffic accident. So Peggy and Joe took in their 3 grandsons and raised them. The youngest is now almost 18.
Despite Peggy’s deep and lasting grief at the death of her daughter, she continued to support, guide and nurture her son Bob. And she has stuck like glue to me, through thick and thin. In retirement from a 40 year career with the symphony, playing cello, she can no longer grasp strings or bow due to severe arthritis. Yet her voice lifts when she sees my number on her phone screen, as does my heart. We share the qualities of steadfastness and empathy.
Nato’s recent clinic visit brought me into contact with a “professional” I took in dislike. Why? In my opinion she judged my son, his ability, his disabilities, his needs, his wants, and his security. It also seemed like she judged me too. {And found me wanting?!}
So I wondered aloud to Peggy on the phone last night; what happened to civility and positivity? Why can’t we say; gee that’s a great idea and have you considered this one, with which I’ve had some success? Or how about this? You’re doing a great job [at work] yet could we promote this product  a bit more? Somehow we feel less intimidated and more part of a team when suggestions rather than criticisms are spoken. I’ve decided I’m going to try to pause before I speak, and listen to what I say and how I say it in the next few days. Change is possible, if only we’re aware. Notice my use of “we” when I mean me? 🙂

For Peggy and all of you out there. Here’s a young woman with a very lovely voice, and a cellist who keeps his bow in his back pocket when not in use, which gives my Nato the giggles!

P.S. The previous post generated LOTS of spam, including from many “dating” sites. Canned ham indeed! **The knitting shown here is part of a special gift for Peggy in honor of her daughter. I chose shades of pink and white for — the spiritual softness of the look.

How do we learn to love? What is it exactly? What comprises love? For me to explain even if only to myself I must start out with an example; I love my children. It is true they are complex beings, and most of them have not lived in my home for a few years to many years, still I know them, I accept them, I respect them. Most of the time I like each of them, and we are stitched together in a fundamental way. I love each and all.
We human beings have our need to form alliances, to join with others of similar purpose, intent, enjoyment. Sports teams, book clubs, knitting groups, foreign film buffs. And parents. Parents of children who’ve died, or who are disabled, or who all play musical instruments or dance. Parents who come together for observance of a religious holiday, or a walk-a-thon, or a parent-child swim class, yoga class, a family get-together or reunion and on and on… [This was fun.]
Most parents want the best for their children. Many lack skills or incentive to learn skills to improve their parenting. Some find books or others (neighbors, cousins, friends, doctors, etc.) to talk with and so enhance their learning. Some parents do what they can and let the rest go. And some are downright dangerous to themselves and/or their children.
In this fundamental relationship of parent and child, the child learns how to parent. And this is such a curious concept, that we would leave an all-important task up to the whims and vagaries of observation – by children no less – of people doing the parenting who are mostly learning as they go along. Those people “learning while doing” are our parents, and later us.
So is there a better method to bring about more informed parents? Parents trained and guided into loving their children unconditionally, treating them with respect and providing for their welfare until they can stand alone?
Here’s another of my circular discussions, but I think the answer comes down to love and all its components; caring, compassion, respect, unconditional engagement, gentleness and acceptance.

**Cards newly made are displayed on this page. All card backgrounds painted by my son whose disability is invisible.

15 February 2009

Have you read the online article with this title at ParentDish.com? (To give credit where due, it was written by Bethany Sanders, Feb. 13, 2009.)

You wonder what our society’s coming to. We have a single mother of 6 young children giving birth to eight more. We have a father who for 17 years has fought his own grief while his daughter is maintained on life support (in Italy)  and finally when he wins the legal battle to disconnect her feeding tube,  the Pope speaks out against anyone letting her die…and now this.

It would seem a 12 year old English boy had intercourse with a 14 or 15 year old young woman ONCE, and she got pregnant. NOW his father thinks there should be a father-son birds and bees talk. NOW?

When my ex-husband decided he wanted to be free of our marriage I took a long hard look at myself. Especially after his uncomplimentary parting comments about me.

I looked back. I had been a very ardent feminist in college. I even led what we called consciousness-raising groups for fellow women college students. And yet all those years later I was dependent on my husband to pay the bills, and the mother of 5, count ’em, 5 children. What happened to the feminist?

That feminist  devoted herself to raising boys who would have sensitivity, and girls who would be strong. I took my job as mother very seriously and think I did an okay job, but I remember constantly looking around at other parents to kind of compare myself to them.

I came to realize that one thing we’re not taught is how to be parents. How to guide children into growing up to be able to make good choices and acquire practical skills. All of my boys can sew on a button, even Nathan who is disabled. My older daughter knows how the engine of a car or diesel vehicle works. My younger daughter can handle, program, use all kinds of electronic equipment I probably can’t even name. And I’m proud to say even when they make bad choices, they’ve shown the ability to grow and try to do better.

And here’s a little boy who will learn how to change diapers, and probably feed and burp a baby, but does that make him a father when he isn’t yet a man? Excuse me for ignoring the fact that he is capable of having intercourse with a woman, or rather a teenaged girl in a woman’s body.

What would the world be like if people actually became parents because they wanted to be AND they had the skills to insure there children grew up loved, happy, fed and housed appropriately, and were taught in turn how to one day take responsibility for the choices they’ll make as adults. And what if these same parents were actually respected for the difficult job of parenting?

If we don’t take direct responsibility for our children, we deserve the results. Because we would be releasing our children into the world, like setting off a destructive bomb.

A 13 year old father? A mother of 8 babies who’s going to leave them in day care seven months after their premature birth? Religious leaders determined to tell parents their own insight into their children’s needs shouldn’t be taken into consideration? Sheesh!

Little Boy_atomic_bomb_2

A ‘Little Boy’ atomic bomb returned to the Air Force Museum Wright-Patterson Air Force Base, Ohio July 15 after a yearlong restoration project. It is the same type as the one dropped Aug. 6, 1945, over Hiroshima, Japan. (U.S. Air Force photo by Jeff Fisher. High Resolution Image)