Friendship Bracelets

In a city known for it's weirdness, there are areas that are weirder than others. The Hawthorne District is certainly one of the best if weird is what you're after, and although Wil isn't, he's drawn to that area over and over again. In particular, The Gold Door. I have no idea what enticed him into that store in the first place, as it's heavy-laden with incense and stuff, totally over-stimulating and he's not a shopper. But, into The Gold Door we went, and back again and again have we been. He now knows one of the shopkeepers by name, Ariana. Not Ariana Grande, he's quick to point out to all whom he drags with us to The Gold Door. The Gold Door has one of those Zoltar machines, like in the movie "Big." He insists all our guests get a reading as his treat, and they are eerily dead on.

He has bought different rocks and stones, purchased earrings for friends, and bought a little bag to put the treasures in, which he keeps next to his TV watching area for easy access. The last time we were in The Gold Door, we took two of his student assistants with us. We first went to lunch, then to froyo, then to The Gold Door, where he decided the three of them needed friendship bracelets.

And he was right.

They needed friendship bracelets. Not because he will ever in a million years wear his, but because it's a physical tie to two people about to leave and move on to college and exciting and promising lives beyond that.

"I love our friendship bracelets," he told the girls as we were walking out of the shop.

"I love our friendship," one of them said.

Me, too.

             Photo: Gold Door Jewelry & Art by: Yogic Traveler - Courtesy: Gogobot

Top 10 Ways to Avoid "Prama"

For those of you not living with a teen, you may not be familiar with the apt term, prama, or prom drama.

For those of you not living with a special-needs teen, you may not be familiar with the additional angst, while at the same time, the freedom, from all things prama-related.

For those of you not living in prama-land, let me tell you the quick and easy way to avoid it, and dare I say, have a great time at prom:

10. Have a really great human tell you and your special-needs teen a year in advance, that they will be attending prom together

 9. Hold them to it

 8. Pay for everything

 7. Get a favorite teacher to chaperone

 6. Get said favorite teacher to drive one of the school-owned mini-buses, and take a group of kids to prom

 5. And dinner

 4. At Spaghetti Factory

 3. Make sure said group is made up of kids that are unlikely to create, or take part in, prama

 2. Make the picture-taking session super-brief

 1. Just go and shake your booty and laugh with your friends, then come home, no after-prom nonsense

The Lottery

Apparently, a lot of people have been asking Wil how he was going to fund his RV. He finally came up with the rock-solid plan that someone would give him a million dollars. When making a list of the millionaires we knew that were likely to give him a million dollars, we came up short, so he revised his plan: he would win the lottery.

For him to play the lottery, I had to, and I have never so much as bought a "scratch-it." Our friendly neighborhood 7-Eleven proved just the place, and as luck would have it, we got the nicest clerk in the world, who made it his mission in life to help us navigate the world of Quick Picks vs. selecting your own numbers, and choosing from a variety of lottery options. I had no idea.

$3.00 later we walked out of there with what he felt sure, were the winning numbers.

They were not.

We've since been back a couple more times to try our luck again. Because he's so weirdly good at predicting things, I half expect to win. Because I'm so weirdly one to project the smallest thing into an impending catastrophe, I've got myself into a total state of how my life will change for the worse, when we win the lottery. Because life is so weirdly full of no accidents, I also know if we are meant to win the lottery, we will, and if we aren't, we won't.

In the meantime, plans for life inside the RV continue to develop. He will shower at 10:00 PM and go to bed at 11:00. He will watch a lot of bad TV and pretty much do whatever he wants, whenever he wants to do it. He already has a roommate lined up, and they are both super excited to live in the RV, where there are no rules and nothing but all their favorite things in and around it. Plus, Care will be right next door, to "get it," whatever "it" is.

The plan is sounding better and better to me, too.

RV= Real Victory

Moving On

Her hair was a little more grey, her face had a few more lines, but the rest was the same as two years ago. Same glasses, same smile, same tiny little body. When our pediatric eye doctor of 13 years (17 years at that clinic) came in, it was like seeing an old friend. She knows Wil and laughs at his jokes. She knows what he can see, and how to get him to respond, even when he says with conviction, "I can't see a damn thing!"

We'd been through the rig-a-ma-roll a million times. When Wil first started there, he was non-verbal and had an eye that crossed (he still does). We had to go every three months, then every six months, eventually every year, and the last time we were there she said we didn't need to come back for two years.

We've had countless pairs of glasses. I've held him down and forced eye drops into his good eye, to make the weaker eye work harder, a billion brutal times. Three days before Wil's eye appointment he started getting very anxious, "There are going to be tears! A lot of tears! I am going to cry when they put the eye drops in my eyes!"

The whole thing is traumatic and PTSD-causing for all involved.

We'd had horrible traffic and then she was running behind, so the eye appointment was taking up our whole morning. We'd left our house at 8:15 and Wil "needed" to be back to school at 11:00, and it wasn't going to happen.

Anxiety increased. Irritation was high. General I-have-got-to-get-out-of-here was through the roof. For both of us. As I looked around the waiting room of young mothers, young children, toys, videos for preschoolers, I knew that neither of us could take it one more time. We'd originally planned to stay until he was 21, but I knew this would be it. This would be our last visit with our beloved friend and doctor. We were moving on.

Even when it's time. Even when it's your idea. Even when it's obvious and necessary and the only thing to do, moving on is hard to do.

Announcements

Spent all morning preparing Wil's high school graduation announcements. Had to clear the calendar. Had to clear the mind. Had to clear the distractions. Had to decide this was how I was going to spend my morning, and get psyched up for it.

Today at school, Wil and one of his assistants, will pick up his cap and gown, and the assistant will lovingly and loyally, make sure it gets in his backpack. I'll receive an email later asking if it made it home.

I had to cut off the list of people to send the announcement to, because I could send it to hundreds. His list of friends and family, neighbors and parishioners invested in his education, his path, his future, are innumerable, but number them I did.

While expressing how hard this season is for me, and how I'm dreading graduation day, one person suggested I treat it all as a celebration.

It is a celebration. There is much to celebrate. A whole book's worth, and in fact, that book has been written. But life is a paradox, and the impending graduation punctuates that fact all too well. While a celebration, it is also the closing of a long chapter. A chapter that has been, at many times, an uphill battle, but also one that has offered sanctuary for him, and respite for me.

To announce is to make a formal statement of fact or intention. The only way I'm going to get through the graduation is to focus less on the former, and more on the latter. What is my intention for this next period of life?

The intentions are not any different from any other time, when you think about it:

* To remain open
* To see the good
* To have a positive expectancy
* To believe in the kindness of others
* To remain loving
* To believe and move as though there are no accidents

Happy Mother's Day to All Whom Mother

Wil sits beside a wonderful woman every Saturday night at 5:30 Mass. She is not, technically, a "mother." She is, however, a Mother. She nurtures and gives, hugs and holds, advises, stands behind, and doesn't flinch. She makes me laugh. If you can do all that, you're a mother, in my book.

 (Happy Mother's Day love Wilson I love all the things we do

together thank you you make me laugh love Wilson)

(From STM)

I raise my glass to all of you that mother. All of you that make others laugh. All of you that are inspiring and inspired. All of you that give and give and give some more. All of you that love mothering and all of you that don't. All of you that wish you had one more, and those that wish they had one less. All of you that have lost and grieved, been denied, and mourned. All of you that got more than you bargained for. And less. All of you that have been teachers and have been taught. All of you that got your asses handed to you and all that have been blessed. And both. All of you that wouldn't change a thing, and all of you that would change everything. But can't.

Happy Mother's Day to all whom mother.

The Back Story

Rest assured, talk of the RV continues and the plans grow more elaborate by the day. For those of you that live in my neighborhood, don't you worry. The RV isn't going to be in the backyard anymore, it's going to be out in front so you can all really enjoy all it has to offer.

One faithful reader was curious as to the back story on the required pawn shop in the RV. I have been negligent in reporting Wil's long and strong fascination with the show, "Hardcore Pawn." He loves Les, Seth and Ashley, whom he calls, "Debbie Downer." Whenever I dare to tell him no, he calls me "Ashley." "Stop being like Ashley, stop being a Debbie Downer. Just say yes." I've been forced to watch a few episodes of the show, and that's plenty for me. However, Wil cannot get enough, and in his true spirit, has recruited several people to watch the new episodes on Monday, and report back on Tuesday. There is zero chance of them forgetting, as he reminds them via text over and over and over, and whatever they originally had planned for 7:00 PM on a Monday, has since been rescheduled.

"Care, how are we going to get things for our pawn shop in the RV? I've been thinking about it. I think we need to find a pawn shop that's going out-of-business, and buy all their stuff to sell in my RV."

The whole question of "back story" has gotten me thinking. Really, isn't everything we think, do, believe and act on, based on a back story? What we want? Don't want? Need? Don't need? Seek? Avoid? Work towards or run from? All are due to the back stories we have.

When one spends hours going through their crap, one's back story is quite evident. I used to value this. I used to fear not having this, "in case." I used to believe someone I know and love would want this because it was of value to me. I used to believe that what and who I am, is tied to the possessions in this box. I used to believe my back story was represented by concrete items, and not the intangible.

What is my back story?

How is it serving me now?

What is my future story?

How do I move towards that in a loving, healthy way?

Top 10 Things the RV Will Include

10.  Table tennis

 9.   Bouncy house

 8.   Bowling alley

 7.    Four TVs

 6.    Guest room

 5.    Four bunk beds

 4.    Couch with built-in refrigerator

 3.    Swimming pool

 2.    Creek running by

 1.    Pawn shop

On a Lighter Note

Top 10 Nice Things that Happened Today

10. Called SSI, and the person I was calling was in, and answered the phone!

 9.  Was told, "You are right, we were wrong. Go ahead and shred that." (So many things right about that.)

 8. Wil went to the dentist and has, miraculously, no cavities.

 7. I sat in the waiting room and read bad (by bad, I mean great) magazines.

 6. To celebrate, Wil and I went out for an early dinner - so early, we were still in time for the lunch special.

 5. At dinner Wil told me all about his plan to buy a three-story motor home, and move into it, in our backyard.

 4. He said, and I quote, "I'm thinking way outside the box here, Care." His RV will be multi-colored, multi-level, and will require his permission before entering. I'm to live in my own house, and leave him alone.

 3. The pass code to his new digs will be F-A-R-T.

 2. When we got home from "linner" (lunch/dinner), I found a lovely card and flowers from a secret admirer.

 1. Now I'm on my way over to Nancy's to watch more bad (and by bad, I mean great) TV and have a few (laughs).

The Inspection

Had a dream last night that my cousin, Emily, and I, each had received mysterious notes telling us to arrive the following morning at some designated location, and that there would be an "inspection."

Now, I am many things, almost first among them, is punctual. In the dream, I was dragging my feet, purposely stalling, intentionally not making it in time for the "inspection." I found Emily, she needed to use the bathroom before we could leave. I was happy for the extra time that took up. On and on the dream went, until we eventually got to the mysterious site - very late.

All kinds of people were there that we both knew (including her mother and two sisters). First thing said to me was the event went until 8:30 PM. 8:30 PM was news to me, and I wasn't having it. I proceeded to spend the next while doing more stalling, hovering around the perimeter of the gathering, watching from afar, all under the pretext of having to make arrangements to stay that late, as I hadn't arranged for anyone to be with Wil that long.

I never did join in.

I never even found out what the point of the gathering was, and what the attendees were actually doing.

I successfully avoided the inspection.

I'm certain that was not the point.

As Within, So Without

Not only have I been on a purging-the-house-and-garage kick for a couple months now, I've been simultaneously trying to figure out what I'm eating and/or drinking, that has been causing me horrible reflux for months, and purging that from my diet.

It's been a much more daunting task than cleaning the house from what I don't need. I appear to be somewhat of a mystery. What seemed to be your run-of-the-mill GERD has not responded to treatment. It's not responded to me eliminating most of the things I love: coffee, chocolate, alcohol, tomatoes (actually, tomato sauce), onions, citrus, garlic, cheese, nuts, avocado. It's not responded to aggressive antacid treatment. It's not responded to buying and sleeping on a ridiculous wedge to keep me nearly bolt upright at night.

It's not responded.

It's shaping up to be food allergies that are causing the problem.

And stress.

Removing the causes of both seem impossible.

Saw an interview with Christiane Northrup, MD last night, when I couldn't sleep. She said that what we believe, is more important than our genetics. She quoted all kinds of fascinating studies of people proved what we tell ourselves about ourselves, what we accept from what our culture tells us about ourselves, and what we focus on, can dramatically change our health.

"Health is contagious," she said. "Everyone talks about disease being contagious, but health is contagious." She said that if one person quits smoking, the ripples go as far as four degrees of separation.

Last Wednesday evening I was just minding my own business, when I suddenly got "that" feeling that I might throw up. I'll fast forward to the end of the story: 10 violent hours later, I finally got into bed to rest, and stayed there three days.

When what you're doing isn't working, it's time to do something different. For me, for now, it's about eliminating what isn't working: junk in my house that bogs me down, foods and drinks that burn my body, stress that can be avoided, or at least better managed.

In through the nose, out through the mouth.

Exhale slowly.

Repeat.

CTSD

Through a wild small world and no accidents kind of thing, I recently had a conversation with a woman that had read my book, and shared it with a bunch of people at work. I then learned that she is a mental health professional, specializing in PTSD.

I came home from the encounter and was telling STM about it, and mentioned I would consider going to her, as I'm sure I have PTSD. "PTSD? That implies the trauma is in the past, that it's over. I have CTSD!"

"Chronic?" I asked.

"Current," he said. "I want PTSD for my birthday!"

Then we, of course, belly laughed, because what else are you going to do?

Wil was listening, and nothing makes him belly laugh harder than hearing others belly laugh (or watching them get injured, but that's another post).

"Well, I have ETSD," he quickly added, "Elmo traumatic stress disorder!"

By the looks of Elmo, I would say he's the one with the trauma.

Grounded

"Keep your eyes on the stars, and 

your feet on the ground."

- Theodore Roosevelt

When we say someone is "grounded," we mean they are sensible, practical, balanced, down-to-earth, low-maintenance, realistic, without pretenses or illusions.

To feel grounded, to be grounding, to ground someone -  all good things.

Even when a child acts out and a parent grounds them, it can be a good thing. A time when distractions and privileges are removed, and one is forced to stay and be "home."

Most of us are in need of more grounding.

Recently, someone I greatly respect and admire, who happens to have English as his second language, said, "Wil puts me on the ground."

And while there are moments/hours/days that he puts me in the ground, for the most part, he is my biggest grounding influence.

It's very difficult to be high-maintenance, full of pretense and illusions when you've got someone forcing you to keep it real all the time. If you think, for one minute, that it's all about you, or even a little bit about you, then you're welcome to borrow any number of special needs "children" I know, to get you over that, fast.

Have a friend who recently had abdominal surgery. From the time she was told she needed the surgery, to the time she had it, was a short period - not enough, probably, for her special-needs son to get used to the idea. Shocker: her surgery and recovery were not about her. Her son had one heck of a time with "her" recovery, the changes and disruptions to the status quo.

If you believe that you co-create your life with whatever/whomever you call your higher power, that you signed up for these exact challenges and opportunities to evolve your soul and learn whatever it was you came here to learn, then you have to accept that getting over yourself is part of it.

It's not about "you."

I believe that's because there is no "you," there is only "us," and "you" are not separate from the collective Us, You are  Us.

We are one.

An Echo in Innocent Souls

I have a meeting today to discuss one of my many hot buttons. The "button" is the way in which many people view those with intellectual/developmental disabilities, and the various slang, attitudes, even gestures and facial expressions used when casually throwing around words like "idiot," "stupid," "dumb," or the forbidden r-word. It's pervasive and to a large degree, acceptable. I just heard someone say, "The man developed a horrible disease which left him unable to speak, and he was not able to share his brilliant mind with anyone. Nobody could see how wonderful he was." One does not need to be "brilliant" to be "wonderful."  Because there are no accidents, one of my favorite daily e-mails today spoke on this issue,  Piro-o-Murshid Inayat Khan in the daily e-mail called Bowl of Saki: "The great personalities who have descended on earth from time to time to awaken in man that love, which is his divine inheritance, have always found an echo in innocent souls rather than in great intellects. Man often confuses wisdom with cleverness, but a man can be clever and not wise, and by cleverness a person may strive and strive, and yet not reach God. It is a stream, the stream of love, which leads towards God." We've worked so hard to bring awareness and equality to the marginalized, the oppressed, the minorities of this country. Let us not forget to include those with intellectual/developmental disabilities in our streams of love.

Things We Know Are True, But Still Don't Believe

There are no accidents.

Worrying doesn't solve anything.

Most of the things we worry about, never come to fruition.

It's the little things.

The qualities in others that bug us, are the qualities in ourselves we need to examine.

We are one.

What we resist, persists.

We can't change others, we can only change ourselves.

There is no scarcity.

Cooperation does not involve a fight for power.

Honesty is the best policy.

The first person to say, "I'm sorry," wins.

All we have is the present moment.

Love is all there is.

Purging and Pondering

Life, we know, is cyclical. Some cycles follow the moon, others, the seasons. I find myself very effected by the light/dark rotation, the days-of-the-week, the patterns, rhythms, and circles of nature, and of life.

It's been over seven years since I gave this house a good purging. I was 44 and in a definite period of Then-and-Now. I'm 52 and in an altogether different space and place in my body, in my thinking and in my soul.

I've got something going on now that has probably crossed over into OCD, but I don't care. There is an urgency, a deep need, a craving for "space." With my children about to be 21 and 19, there is more than ever, a clarity about what was in the past, what is in the present, and a making room for What is to Come.

I don't need my high school cap and gown.

I don't need my children's baby teeth.

I don't need the shoes I wore for my wedding.

I don't need every card or letter ever written to me - regardless of how sweet and lovely they may be.

I don't need the old crib and matching bedding, complete with bumper.

I don't need the photo albums containing all the pictures of students I taught over 20 years ago.

I don't need all the old Barbies and trucks, and any attachment to what my theoretical grandchildren will want to play with.

There is a lot of things I'm able to identify as being Not What I Need Now, as I clear and make way, empty and leave open the drawers and spaces made clean.

I recently heard that it's important to remember that acceptance is not the same as resignation. Resignation will take you down. Acceptance will lift you up. 

There is nothing more concrete than going through your earthly possessions and physically holding them in your hand, and being lifted up by the understanding that you aren't the same person that first beheld it.

As Easter was about to roll around again, Wil started talking about Devohn, the Easter Bunny. Some of you will remember that Wil has had a long infatuation with the Easter Bunny, and came up with the unlikely name of Devohn many years ago. 

Wil and I were asked to lead a small group of kids preparing for baptism at Easter. We enjoyed the experience very much, and were excited to stay up late on Holy Saturday, and welcome them into the waters at the Easter Vigil. We went to Bi-Mart and made up little gift bags to give "our" kids: a chocolate Cross, Easter candy, and a toy Devohn for each one. "I need to have a Devohn, too," Wil said. So, of course, instead of four Devohns, we bought five.

Wil came home and wrote this note, taping it to the mantle in the living room, just as he does his yearly Santa note (Go to my room top of stairs and say hi to me, Love, Wilson):

I sent a text to Devohn's helper, and reminded him that we were expecting him to reappear outside our house, as he had graciously done the year before. I prayed Devohn was still in existence, and easily accessible, as we'd not communicated about this beforehand. Devohn did not disappoint.

Now, each morning, Little Devohn wakes up, goes downstairs, and gets ready for his day while his "dad" is at school. Wil gently prepares a few snacks and some entertainment. "Now, you stay there, Devohn, and wait for me. I'll be back later. Be good."

And Devohn is good.

And that is where I "am." I am home with Devohn while he plays with his toy and eats his carrots. I am purging and pondering. I am coming face-to-face with the past, and being in the present. Every empty drawer and inch of extra space on a shelf a reminder that if we don't make room for things, they can't find their way in.

Backseat Driver

Last night I dreamed I was in a car with my friend, Kim. I knew that it was Kim's car, even though it didn't look like Kim's car. Thing is, we were both in the backseat, I in the middle, she on the right-hand side, by the window. I looked up and saw that indeed, no one was in the driver's seat. I turned to Kim and asked, "Are you driving?"

She said, "Yes, my mom bought me a special car, I can steer from this little panel on the door. She knew I would need a second way of steering when she saw the children I have."

"As great as that is, I'd feel so much better having you up there, in the driver's seat, making more precise and controlled driving decisions."

As can happen only in a dream, she was instantly transported, and safely behind the steering wheel, bringing me much relief.

Let's part-of-me this dream, shall we?

What part of me is in the backseat of my life, trying to steer from there?

What part of me has children that require a second/different/unusual, perhaps, way of "steering" them?

What part of me is more comfortable having someone else drive?

What part of me gives to my children a special "vehicle?"

What part of me is a backseat driver to others?

Unknowing

Got another download from Mary last night: "You don't know."

I knew right away what it was I didn't know, I don't know what's best for other people.

What a relief.

It's exhausting playing the If-She/He/They-Would-Only ___________ game.

If you believe we all come "here" to learn a pre-determined set of lessons, and I do, then who am I to say how one goes about learning them? I'm probably interrupting the process with all my good ideas. Anne Lamott calls this the disease of Good Ideas for Other People.

The good news is, this disease does not have to be chronic, and one doesn't even need to see a doctor or alternative health care provider to cure it. One only needs to know that they don't know.

Witness, rather than suggest.

Love, rather than judge.

Let go, rather than control.

Easier said than done.

Awaken into Action

Not enough can be made about Terry Whitaker's latest endeavor. She has partnered with two like-minded people, Beth Banning and Laura Pedro, to create a 6-week virtual event like no other. Awaken into Action has some of the world's most inspiring thought leaders: Gary Zukav, Maya Angelou, Bob Thurman, Michael Beckwith, Barbara Marx Hubbard, the list goes on and on (and on).

Do yourself a favor, click over to Awaken into Action and take a look. The teachings are all available online at no cost, for up to 72 hours after they air. If, however, life does not allow for you to catch them during that time, there are two different options available for purchasing the event, to watch and/or listen to, at your convenience.

It's a new year.

It could be a new you.

Awaken, into ACTION!

Seeing

The older I get, the harder it is to sleep well through the night. One thing I've found that helps, is to wear a sleep mask. Mine came from WinnCo and set me back $1.67.  I love it and everything about it. I love the texture against my skin. I love that the light from the clock does not shine in my eyes. I love that it mutes the world and separates me from it. I love that when I put it on, it signals my body that I am done, it's time to rest, I'm off duty.

Last night, I woke up and realized it was not on my face. I couldn't find it anywhere. My hand reached around and it was in none of its usual hiding places. I finally turned on the light, and wouldn't you know it? It was in my other hand. I was holding it the whole time.

It was a ruby slipper moment. The power, the magic, what I was looking for, was with me the whole time.

I am loving my word-of-the-year, all five days of it: Observe. My friend, Val, asked me, "What is the difference between witnessing and observing?" I've been mulling that over ever since. Finally, I did what any normal person would do - I Googled it. Found this article. I've now changed my word to "Witness." Observe is to strengthen the ego. No, thank you, mine is plenty strong. "The scientist observes, the mystic witnesses."

It's not easy see what's right in front of us, what we're "holding." It's hard enough to observe it, a greater challenge to witness it. But worth the effort.