October 26, 2010

I am Crone, hear me sigh.

Several years ago, new to the city and state and feeling the need for an unbiased opinion on decisions concerning my eldest son, I was led to the office of a therapist, a woman I visited perhaps a dozen times for advice on navigating the transition of my special-needs child from childhood to adulthood. Her name was Edie. For all parents this is a tricky period, but for those whose children may never be capable of independent living, there are particular issues that arise. Being the only person responsible to make decisions on my son's behalf, the weight of my choices was feeling heavy indeed.

At that time, in my mid-forties, I'd already appreciated how my choices, as a woman and a mom, affected my children. Now that I was finally seeing the sprouts of wisdom in my garden of maternity, my children were ready to be transplanted elsewhere. Loss, regret, fear, apprehension, and anxiety swirled around me. Being in NYC on 9/11, moving 1000 miles away from my mother, and starting my own business were also challenges at the time. Looking up at my younger son, eleven inches taller than my 5'6", and seeing the wonderful potential in him, made every choice seem so important. I knew he would leave home soon and I already missed him. I wanted to make the right decisions for both of my children, but most of the time, honestly, I felt really tired.

Women in your forties, you know the kind of tired I mean, right? You're waving goodbye to your younger self because now she is not just a block away but really, almost too far away to see anymore. She's gone down the street and turned the corner and now you can't whisper to her. You can't converse with her. You have to yell pretty loud to get her attention, because she is a memory and your memory, due to age or stress or menopause or just too many things on your to-do list, is not as sharp as it was when you were thirty, or forty. You are officially "middle aged" and you don't quite believe what some older women have told you -- that your fifties and sixties and seventies can be wonderful, liberating, expanding, breathing-out decades. You feel like you are at the crest of a very steep hill and there's a lot of fog; you can't quite see the bottom of either side, but the past, well, at least it is familiar.

So, being at this particular place, I sought counsel and while my visits only lasted a few months, I took away advice that has stayed with me years later and one particular session with Edie came to mind this morning.

In my visit with Edie I related a dream I'd had. I opened a door and entered a bedroom. Just ahead was a large bed, a nightstand, no windows. It was almost dark. I got in bed with my love in the dream (a nondistinct male figure who seemed to have no relationship to anyone in real life). Dream-me noticed an old woman sitting in a rocking chair in the corner of the bedroom. I said something like, "She can't be in here with us." I then went upstairs to use a bathroom, and found that I was bleeding profusely. There were other details in the dream, but this is all I remember of it.

After listening to my dream, Edie began talking about crones and the various archetypes of women. I had read "The Wounded Woman" years earlier, but had forgotten most of it. When I began to look at my dream from the perspective of the women in the dream being myself at different ages (crone, my present age, menstrating girl), it all started to make sense.

Fast forward ten years to yesterday. I'm sitting in the waiting area of a very busy pharmacy where two mothers, who I soon realized did not know each other, were with their two small daughters. One looked to be 4, the other 5. Each with blonde hair; they were strikingly beautiful little girls. But, as everyone in the pharmacy began to realize, not the best behaved. Like small ponies, they wanted to run. Apparently they hadn't been hit with the cold and flu that have arrived in town with a vengence. Healthy, smiling, humming...they just needed to be in a big yard, like puppies. Like boys. The energy. I thought of the dog trainer on TV who puts dogs on a treadmill to get their energy out. (Warning, never try that at home, in your barefeet, with a Pekingese--you can get very very hurt!)

Anyway...The older girl delighted in her role of enticing the younger girl to leave her mother's side, exit the pharmacy door, and run around the big waiting room of the adjacent medical center. Smiling, bouncing, and with what some might call a "delightfully wicked" expression of girl power on her face. I'm sure I heard Mitch Miller singing "Don't fence me in..." (just give me room, let me straddle my old saddle underneath the Western sky...).

The older girl's guardian, Weary Mother #1, looked like she'd given up years ago and adjusted to the fact that now a person who wasn't very big at all would control her life for the next few decades. Like a well-behaved dog, she slowly walked from one area to another following her running daughter and then when all else failed kept her still for a few minutes with a large pink strip of candy.

Weary Mother #2 tried her best to keep her small daughter by her side, but she was not as powerful as the lure of the five-year-old potential friend. Her daughter would run out of the pharmacy, she'd call to her, her daughter would look in her direction, turn and go the other way, off to explore with her new pal-- elevators, the ATM, stairs, strangers in the lobby. Mother #2 would leave the pharmacy, go get daughter, pick her up and bring her back to Start. Daughter would whine, you could hear the whining and crying really well, but when I looked up to see the source I could see this child had perfected making crying sounds while slung over her mother's shoulder, all the while smiling over her back. Practically winking at me. This was a fun game!

And on and on it went. For the 45 minutes I sat there, the game continued. Girls ran out; Mother #1 slowly followed and corralled daughter back in, at times bringing older male child in on it to stand at the door and prevent daughter's exit. Poor boy, he'll never make the football team because his 14-year-old body, in too-big shoes, basketball shorts that were so huge they looked like a nylon skirt, and a gang-style T-shirt and sweatshirt (seriously, he'd be able to fit in these clothes well into his forties) was incapable of blocking a five-year-old from going through an open single door. Mother #2, would call, then hurry to her daughter, pick her up, and the game went on. The mothers never acknowledged each other in any way. No, "Boy, these girls are something aren't they?" Nothing.

This was almost more than my inner crone could stand and the severe headache I'd gotten from an antibiotic that I was there to replace was making keeping my mouth shut very difficult. But I remembered what it was to be a mother with a misbehaving child and feeling all eyes were upon you. Still, these mothers had given up, and their offspring were barely out of the gate. What would these girls be like at thirteen? Oh, Crone, shut up.

Finally, Mother #2 holds up a bag of Skittles. "If you'll stay here, I'll get you these." Small girl looks at her and ... runs out the door. From my front row seat, I close my eyes and lean my head against the wall, thanking heaven for little boys. In a few minutes, I open my eyes and Mother #2 is paying for her purchases, handing the bag of Skittles to the cashier. Soon, she and her daughter leave the pharmacy, small hands clutching the bag of candy. The princess has left the building, I think, but not so fast. As the mother makes her way to the parking lot, daughter breaks away one more time, and runs back into the pharmacy. She wasn't ready for the game to be over, I guess.

It seemed so clear to me what these mothers "should" have done. How they should have handled their daughters. And all this shoulda, coulda, woulda made me feel so cronish and sad, too, because where was all this knowing when I needed it? When I was the one with a boy who picked up a can of soup and threw it at his brother's head in the shopping cart in the grocery store. Who was tired all the time and seemed to always be reacting to events others put into place. I felt powerless, but I wasn't. I just didn't know anything about where a mother's power could be found. I was floating on a carpet of submissiveness and passivity, and I must say that is no way to live. The only counterbalance I had when my children were young was an over-reacting male presence to my submissive female presence and, well, the ying-yang thing did not work as well as I'd been led to believe. But now I've passed 50 and know everything.

It's not easy sitting in the crone's rocking chair and I am feeling particularly appreciative this morning of my mother, Dora, and former mother-in-law, Dorothy, as well as a good older friend, Grace. Grace was 50 when she met me, a very pregnant young woman who'd just moved to Florida, far from her parents. She took me under her wing, and a comforting wing it was. (Yes, then I lived in FL and my mother lived in Ohio. Now it is the other way around.)

These women were so supportive of me and I can only hope that Mothers #1 and #2 have a helpful crone or two waiting nearby for them as well.

October 22, 2010

From our hilltop...

It has been quite a week. Quite a month, actually. Everything in me sighs with the release that comes from "too much." But much of the too much has been good, so finding balance and prioritizing the choices I do have has been challenging. With this stress I've found the changing of the trees on our property to be comforting. Dependable. Steadfast.

Like a child who longs for stability, I know that no matter how much there is to do or what business or personal problems or joys will pop up, the trees are going to turn their vibrant golden hues, then let go and fall to earth to disintegrate into next year's topsoil. The land will rest soon, and all of its potential will lie hidden to me, wrapped in snow and covered in a light-gray winter's sky. The growth of spring will only be a hope, and my being here to see it a desire, never a given. Nothing in life is.

I feel the cool air and hear the crackle of leaves under my sturdy shoes, now lined with wool socks. Our dogs seem to want to sniff every leaf--the squirrels who teased them, jumping in the treetops this summer, have left their scent. Carried on maple, oak, walnut, and buckeye leaves like magic carpets made just for this, the squirrelly smell has trickled down to the worn-out grass and given the four-legged detectives something to investigate.

Tyler stands peering over the edge of our hill to the steep leaf-covered slope where chipmunks scurry along the dead trees that fell two winters ago. He wants to run after them. His eyes are getting older and, while he knows something is moving, he can't quite see what it is and he's trained to be obedient and stay.

I feel the same. Something is shifting, but I am not sure what it is or what it means. This seems to be the time of year for it, this time right before the season of forced festivity. I am always ready to set my dreams for next year in November, and they are not the giving up kind but the saying yes kind. What will I say yes to next year? And to say yes, then to what will I say no? And then, I think, how lucky to have the luxury of these sort of choices.

A chipmunk crosses the leaf-strewn patio and Tyler sees it from his post by the window. He knows what it is now, and plans to follow it one day.

October 14, 2010

When a Child Is Different

Sometimes you wake up in the morning thinking you know just how the day is going to go and from out of nowhere comes a gem, a gift . . . the universe seems to wrap its arms around you for a moment and give you a psychological hug, and you're alone and there is no one to thank and that's why blogs were created.

I recently discovered the NBC TV show "
Parenthood" and it's just everything I love in a TV show: interesting, realistic family dynamics and great writing, actors who seem perfect for the roles and wonderful nuggets of family life within each episode.

There is a scene in the most recent episode (
direct link to full episode, "The Booth Job" here) where Monica Potter's character Kristina Braverman (love this last name, by the way) attends a support group for parents of kids with Asperger's syndrome. (Her husband Adam, played by Peter Krause, doesn't want to go and so she attends on her own.) Kristina explains that her son, Max, is 9 and was diagnosed about a year earlier. She then deflects the attention from herself and another woman starts to share what's going on in her life.

I cried in MacDonald's today...I've been so stressed out being at home with Anthony, my 6 yr old with Asperger's, all the time. My husband leaves for work at 7 in the morning and sometimes I don't see him until 9. And it's just me and Anthony, all day. ... I love my son, but it's a little like living on an island all the time, with these rules, these rules that don't apply to other people. Thinking all the time, "should I drive home a different way to avoid that dog?", living with this pressure all the time that it feels like you can't breathe...
...and the scene cuts to Kristina's face, which is both frozen and so expressive at the same time (how does an actress do that?) and she is so full of emotion and everything she feels about being a mother of a child who is different....

A child who is different... years ago, twenty years ago my "different" child was 9 and we did not have a home computer. I had never been on a computer. No internet, no Facebook, no Twitter. Hard, perhaps, for a young parent today to imagine, but this was in 1990. No local support group. Though active in a large church, though having lived in the community we were in since pregnant with my child who started school at age 3 in a special needs class, I did not know one other mother who had a child anything like mine. (And that may be indicative of my introverted personality, the social circle I was involved in, not simply the availability of such a support network...) So when I heard the actress say "It's a little like living on an island all the time..."


It's a lot like living on an island all the time. And, even today, even with support groups and fundraising walks and the Internet and Facebook; at the end of the day it is two parents (or one) in a house or apartment with all the "stuff" of life -- the ups and downs of marriage and relationships, the money issues, the health issues, the hobbies and friends and job issues -- and then the Really Big Issue that puts you on an island that keeps you separated from the Way You Thought Your Life Would Be. And on that island you can only look out across the water and see an image in the distance of what you expected.

My eldest son does not have Asperger's. His official diagnoses (and perhaps your child's as well) are a reflection of the multiplicity and complexity of trying to label (in the early '80s) a growing, changing, human being with limitations and potential:

Developmental Disorder-NOS

Profound Hearing Loss;

Sensory Integration Dysfunction

Borderline intellectual functioning

likely a genetic disorder never identified, 'not this, nor this, nor this,
but something...'

When you have a child who is "different" there is no end to the labels professionals can attach to him, that society will seripitously assign him, that you yourself will unconsciously give to empower or limit him. It's a minefield and you embark on a walk through it without a map and likely in your twenties or thirties when, and I can say this now, you haven't even been a grown up that long yourself. When I think that the universe entrusted me with the care of small children when I was in my twenties I want to say "Do you know what the hell you were doing?"

When your child is different.... it helps to have connections with other parents who have these thoughts running through their head: "God damn, it's morning." "What did I do to deserve this?" "I love my child so much, it hurts, it hurts, it hurts." "Will I ever have a minute to myself again?" "I didn't know it would be like this." "I don't understand what's going on here." "How am I supposed to handle this?" "Eighteen years of this?" "I'm way past tired." "No one understands." "Why?"

The feeling of being on an island can be overwhelming. But, today, know that you are not without resources to help. There are others who know what you are going through. There are other islands out there and you can connect with them.

So, there is like this place where the water is very deep and interspersed throughout this deep water -- close enough to see most of the time, but sometimes not -- are all these other islands with all these other parents and kids. And some have boats and some do not. And some once hated their islands and then found the flowers and trees and wildlife there to be interesting and important, and some still hate their island and just want to get off. And some are older and have been on the island a while and have built a tall firetower to head off danger and also to wave to the other islanders. And some have dug a pit and buried everything they dreamed of and felt and they don't know if they'll ever uncover those dreams again. And some have planted a garden and harvested new dreams.

Some have buried their children and some have launched their children in boats of their own to live on islands of their own with tools their parents gave them. And now these older parents send out bottles with messages of hope in them, perhaps bottles that medication once came in. Perhaps wine bottles of the wine they dumped out because they realized that while you can deaden the discomfort of having a different child with alcohol or pot or medication or sex or anger or blame for a little while, nothing helps in this struggle quite as much as facing your fears and ignorance and limitations and coming up with a flexible plan, slapping on an optimistic face, counting your blessings and realizing that a lot of people in the history of the world -- and indeed in the world right this minute -- are figuring out things a lot more challenging than you face in your warm and safe little home with a person younger and smaller than yourself. I like to think the bottles are those pretty blue ones that Saratoga water comes in... Anyway...

When my son was a little boy the pediatrician was sympathetic. "I know some parents have to deal with problems that are much worse," I said, leaving his office one day when things were really coming to a head and I knew Something Is Really Wrong With My Child.

"Yes, they do," the doctor said, "but that doesn't make your job any easier."

It was the most compassionate thing anyone had said to me up to that point.

So, to wrap up... if you are one of the gadzillion people who have a child with a autism, Asperger's, developmental delays, PDD-NOS, mental illness, or if you know someone with a child like this, check out NBC's show "Parenthood." It'll help a bit, if you can find the time to watch it (The Booth Job will be available to view online until Nov. 27, 2010, and perhaps afterward depending on the network).

Then, go online and find a support group, a chat room, a new book, a local or regional association or government agency that provides information and support. Build respite care, however you can find it, into your life and connect with parents of older children. We have been there. We've been that isolated, exhausted, frustrated parent you are now, aching with a love so deep for a child who seems so unknowable. And things can get better. You will get stronger and wiser, and, like the title of a very good book, "You Will Dream New Dreams."

(Here is a helpful review of the book. The reviewer points out some very interesting things, pros and cons, about the book.)

You might feel like you're on an island, but you do not need to be isolated, not anymore.

--Janice Phelps Williams. Author of "What Saved Me: A Dozen Ways to Embrace Life" under pen name, Claire Starr. Founder of Lucky Press, publisher of the award-winning book "There Are No Words" by Mary Calhoun Brown.

View her son's artwork here.

Read his book here.