A Coke, A Hug, and A Smile

Beckie and Wil

Monday night, I was talking with one of my friends who is a skilled nurse, and many of her patients struggle with mental illness. Upon entering the room of one new patient, she found the woman on her bed, sobbing uncontrollably. When my friend calmed her down enough to inquire what the problem was, the poor woman blurted out, “Someone took my Coke away! All I wanted was a Coke with crushed ice!”

My friend made her way down the hall, and returned with a nice cold, fizzing drink filled with crushed ice. The woman stopped crying immediately and thanked her profusely.

“A Coke with crushed ice is her world right now,” my friend explained.

I do not understand this woman’s mental illness like my friend does, I have neither the training nor the experience, but I do understand what a diagnosis does to you. I have felt how it pulls the rug hard and fast from under your feet, and leaves you suspended in time, a whirl of scientific terms and statistics closing in on you. Your world has instantly been de-humanized, and you crave something that gives you comfort, some human understanding, in this too close and confusing place. And then, someone takes your freaking Coke with crushed ice away? What the hell?

I have a dear friend who recently went through a deep depression. I had never seen her like this, and I was really scared for her well-being. I sat with her and listened to her long-buried struggles bubbling to the surface, and how terrifying and difficult it was to make her way through them. I felt so ill equipped to help her, but I didn’t want to burden her anymore than she already was by asking what she needed from me, so I was there for her in person as much as I could be. Finally, I admitted to her that where she was scared me, and I wanted to help her any way I could, so please tell me, how can I be there for you in the way you need?

And, she said, just be you, that is enough.

Whenever anyone asks me about how I felt when Wil was diagnosed with Down syndrome, it’s like I have this internal zoom lens that beams me back to the day he was born, with his 7 lb body wrapped tight in a white hospital blanket with a thick blue and pink stripe, laid upon my chest covered in a thin, dull white hospital gown, with little faded blue patterns. The internal camera zooms further still, and rests in a full close-up of his eyes. Those big, blue almond shaped eyes.

So many people did not know what to say at that time. Heck, I didn’t know what to say. Then, my girlfriend Kelly, who I called up shortly after Wil was born, and sobbed into the phone that he had Down syndrome, asked me, “Well, how much does he weigh?”

What a refreshingly normal question! In that one question, I felt a sense of normalcy and of community, two things I had been sorely missing in those tight four hospital walls. I am sure my emotions at that time were not much different than the woman who was delivered that sparkling Coke with crushed ice that had so recently been taken from her.

So, when my dear friend struggling with depression answered my question of how I could help, by saying she only needed me to be me, that was enough, I fully understood. I needed no further explanation.

I think, many times, when we want so desperately to help a friend struggling with a diagnosis, it’s easy to get caught in the trap of thinking we need to do or say something extra special, when what they really need is the normalcy we bring with us, and a comforting sense of community.

And, if she cries out for a Coke and crushed ice, for pete’s sake don’t question it, be a friend and get her one, and deliver that Coke with a hug and smile. A friend deserves nothing less.

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To Those With the Gift

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There are some people who are just extra special, that have the “gift.” I am not one of them. At least in the sense of what I am speaking.

Today, we had an 8-year-old friend of Wil’s over. In the last 2 years, Wil has not been invited to a birthday party or a sleep over, yet I know very many kids his age are doing so.

I understand. I get it. I don’t say this to make anyone reading this feel a sense of guilt. It’s simply our reality.

I watched Wil play ball with a group of typically developing boys. They were so kind and patient with him. They encouraged him and included him fully. But when he grew tired of the game and walked off of his own will, I could see the sense of relief in the boys’ faces. They could just play. They did not have to be patient. They just played with others of their own level.

You may say, well, that is a good lesson for them, and yes, I would agree it is. But, really, they are 8 years old. They just want to play. Didn’t you? I know I did.

So today, when Wil’s 8-year-old friend, Lila, who asked for this play date with him came over, I was just as thrilled as Wil. She was not cajoled by her mother out of the act of kindness or charity, she simply out of her own will, like most typical 8-year-old kids, asked for a play date with someone they like.

I was also a little nervous. When she came over before, Wil’s two sisters were here. This little girl is smart. Very intelligent and very brave. She can easily hold her own with tight twin girls who are two years her senior. When you are 8, that 2 year difference is a big deal, but not for her. When Wil had his stubborn moments, he could have a break while she played with his sisters.

Not today.

Wil’s sisters were with their Grandma and Grandpa Taylor. A fun swimming and boating day with another 10-year-old friend an hour away.

The play date started off well, a new introduction to toys, then lunch, that part is easy for just about anyone. But, Wil does not speak the same level she does and he still loves Dora and Doc McStuffins. Kid stuff. Fine by her, we’ll just move on to something that doesn’t need an age limit. Let’s play Wil’s drums!

BOOM BANG CLING (oh, yeah, the cymbals, too). Out came the recorder, and whatever else I had in that music box. It was the happiest I’ve been as a mother of three in the midst of ear shattering noise.

Then it was off to the hose, and the slide that goes into the little pool. Splashing, spraying, laughing and squealing. Water is always equal playing ground. Until, Wil sat at the top of the ladder and wouldn’t budge.

I have seen similar instances to this at the park. Wil has very little control over his environment. Everything and everyone move so much faster than he does. So, what would you do if you felt you had little control over your environment? If you could sit at the top of the slide and make everyone wait, when they are usually moving at warp speed ahead of you, wouldn’t you delight in making them wait? Just a little bit? So, at the top of the slide Wil sat, un-budging.

At the park, I see two reactions. Kids either “mother” and sweet talk Wil, or they just wait until I come over and take care of the situation.
Not this girl. This girl has the gift.

“GO DOWN THE SLIDE WIL!” She says loud with authority.
He gives her a look, sees that she means it, and down he goes.
I love it! She called his bluff!

You see, there is this delicate balance between being mean, being enabling, and seeing where someone is simply being a stinker.

She saw stinker, and she called it, frank, to the point, and the next moment they are back to laughing and spraying each other with the hose.

It seems so simple, so typical, from the outside looking in. But, I’m on the inside now, and Wil is just not treated in that typical way, because, well, in some ways, he’s not typical, and people just don’t know what to do with that. So when I see something like this, I see it for the gift that it is.

I’ve heard it said that everyone should have a child with special needs. And, I know exactly what the author was talking about.

How do you appreciate something like day so completely? How can a ride down the slide have so much meaning? How can a simple play date fill you so fully?

I was not born with the “gift.” And, I think, that is exactly why I believe I was gifted Wil. I would have missed so much without him.

~This post is dedicated to those of you who have “the gift” …you know who you are, and I am so very thankful for you! And, for those of you, like me, that do not have it, there is still hope, if we simply pay attention and learn from those who have it. Life is so very much brighter that way.

Friends Keep Your Heart Light

I was struggling with overload last night, and again this morning. Try as I might to pinpoint the source, so I could address it, it just wasn’t coming. I was a stressful blank….http://christieleightaylor.com/friends-keep-your-heart-light/

Wil Calendar 2008 004

How To Have a Stress Free IEP (& Low Stress Life!)

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How to have a Stress Free IEP:

Step One: Maintain positive expectations.

Whoa, wait! What if I miss something if my head is in the clouds with positive thinking? There is so much to think about and worry about! If I’m not on top of this, who is going to be? That may work in your world, but not mine!

That would have been my response several years ago. Three kids under three, one with special needs, and I was fueled by stress. Stress was working for me, it kept me up and running, and on top of things. Until one day, I bonked!

I just broke down and cried one day but I didn’t know why. I can do this, I can handle it, so why am I crying? What is wrong with me? I knew all this stress was taking its toll on me mentally and physically, and I knew I needed to make a change, but I didn’t know how. I was scared that if I let go of the stress, I would miss something critical. I needed to stay on top of my son’s needs to give him the best opportunities in life. If I let go of stress, wasn’t that being irresponsible?

One day, while at the library with my kids, I happened upon one of Dr. Wayne Dyer’s books, “The Power of Intention.”  I remembered reading “The Road Less Traveled” way back on my pre kid working days, and really liked the spiritual aspect of it. So, I flipped through this book and found it very easy to read, and very uplifting. I decided to borrow it, and was soon hooked. This book was exactly what I needed, and I went on to read many more of his works.

I learned that I couldn’t wait around for things in my life to change. I had to change my thinking in order to change my environment. Holding on to blame, anger and stress, no matter how justified, was only holding me back from receiving the positive results I desired.

Replacing stress and anger with positive expectations is not easy, but I knew if I continued to hold on to stress, it would continue to decrease my quality of life, and eventually lead to serious consequences with my physical health. So, even though every day it is easy to fall back into old patterns of stress, I know that if I make the effort to change my thoughts to those of positive expectations, the results will always be worth the effort. I have found the best way to maintain a positive mindset is with meditation.

I now meditate for 20 minutes at a time, and it zips by, but it didn’t start that way. I decided to start meditating for 2 minutes at a time, and this is how: Sit upright, close your eyes and take deep breaths. Count your breaths as you inhale slowly, hold your breath for a beat, then count as you slowly exhale. Do this for a few moments until all you think about is your breath. You will have thoughts that enter your mind as you are doing this. When they do, do not give them any emotion, simply observe that they are there, then visualize them floating away on a cloud. It’s important not to give your thoughts any emotion, good, bad or otherwise. Simply watch them float away. (I was always nervous I would fall asleep, so I set an alarm and that allowed me to relax)

When you have successfully reached a point where you are only counting breaths with very few intruding thoughts, bring up a picture in your mind of the IEP (or the situation that you are feeling stressed about). Visualize yourself smiling and satisfied with the results. Don’t worry about the details of how you got there, just imagine all is positive and you are feeling satisfied. Now that you have that mental picture, internalize those feelings of well-being. If that is difficult, remember a time when you felt all was well and going in a positive direction. Let those wonderful emotions flood your body and sit with them until you feel enveloped in them. Now visualize surrounding everyone in the situation with love. Yes, even that person you can’t stand that always seems to be standing in your way and blocking your success! Any anger and blame you hold will be blocking you from the positive results that you desire. Remember, this is for you and your child, not for them, so go ahead and do it! Surround every single person involved with an aura of love. Watch all the stress, anger and blame evaporate as everyone is enveloped in loving feelings of good will.

Slowly open your eyes, but remember that feeling and that picture. What is important now is that you maintain those feelings as you go about your day, no matter what should unfold. If a stressful occurrence happens, simply excuse yourself to go to the restroom, outside, or anywhere you can have a few moments of privacy, close your eyes, and bring back those positive feelings.

I’ve found, whenever I let go of the stress of the details, and hold the feeling of a positive result, the IEP goes amazingly well, and things happen I never would have planned myself to bring about a positive outcome.

This does not mean I sit around with my eyes closed and hope everything works out for the best. Quite the opposite. When I maintain this positive mental image and state of mind, people are more cooperative and more willing to help me, and new opportunities present themselves that I act on.

This has worked so well in having successful IEPs for my son, I’ve extended this way of thinking to all areas of my life. If I find myself angry with someone or filled with stress about something, I close my eyes and surround this person with love, or visualize myself smiling that the situation worked out. I don’t think about the details of how it came about, I simply visualize being satisfied with the end result. Then, I go on with my days, maintaining this positive image. It’s not always easy when there are bumps in the road, and that is why I read a few spiritual passages every day and meditate to keep me on track. I have found this effort of maintaining a positive state is always worth the results.

Raising a child with special needs is a very rewarding experience, but it can be filled with a lot of unpredictability which can lead to high stress levels. This is one way I’ve found to be very effective in reducing stress and bringing about positive results, and I share in hopes that you will find it helpful, as well.

All the best,

Christie

Life is good….even if it is covered in coffee stains

coffee love

Life is good…even if it is covered in coffee stains.

My daughter was working on a report on my computer, and I happened to have a full cup of coffee next to the computer. She bumped the coffee and some of it splashed on my computer, but the majority of the spill landed on her papers. (My computer is fine except the ‘five’, ‘six’ and ‘dash’ keys no longer work)

After my daughter’s gasp at the unexpected accident, she calmly got up and grabbed some paper towels. She then dabbed the coffee off of the papers, and carefully placed them on the kitchen table to dry. The only thing she said was, “Sorry, I didn’t know that mug still had coffee in it. The papers are coffee(dash)stained, but my teacher can still see all the work is done.”

Wow, where did this girl come from? If she cried over spilled coffee or got angry that I left a full cup in her work space, I would have understood. But she did none of that. No matter whose fault it was, the situation was what it was. She took responsibility for herself and the situation was handled. Life was still good, even if it was covered in coffee stains.

We adults have acted with less maturity then my 8(dash)year(dash)old girl. I know I have!  Sure, our problems might be equated to a scalding pot being poured directly into our laps. And, ouch, that is going to scar! Yet, no matter who did the spilling or why, the only thing we have control over is our own reaction. It’s up to us whether we want to linger in the mess, and surely we’d be justified in doing so, or we can dab it up the best we can and move on.

Or, wait, maybe the lesson to be learned here is to quit drinking coffee? But to me that would mean not really living. So, back to where I started: Life is good…even if it is covered in coffee stains.

The End.

Dog Hair and Spilled Ketchup Between the Seats

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This morning I washed, vacuumed and Windexed my van. It’s an ’05, and has some wear and tear, but at the moment, it’s looking pretty good. I enjoy my car like this, but my kids don’t.

They know it means the dog will have to ride in the very back of the van. At least for a few days. Then, the efforts of removing his dog hair will have faded enough from my memory to give in to their pleas and I’ll allow him to ride on the bench seat with them.

The dog hair doesn’t add itself to the van gradually, it’s an all or nothing deal. Just one short car ride with the kids to school and back, and my car looks like the dog has lived in there all day, every day, for a year.  As if his immense shedding were not enough, his hair also intricately weaves itself into the kids’ clothing.  At school drop-off, while some moms are giving their kids a quick spit wash to rid them of their morning cereal milk mustaches, I’m giving my kids a quick once-over with the lint brush.

When my car is clean, I can almost guarantee no one will see it. However, when it’s at the peak of its dog hair-filled, food-spilled, toy-strewn glory, the cosmos will work its magic to invite people in.

Just last week, I met Juliette, a good friend from high school I hadn’t seen in years, out for dinner. My car happened to be at its peak messy state, and I didn’t have time to clean it before dinner. “It will be fine,” I thought, “I’m meeting her at the restaurant, she will never see my car.”

Sure enough, when Juliette and I left the restaurant it was dark and I happened to have parked in a lot that was closer to the restaurant, so guess who drove whom to their car.

That never would have happened if my car was clean, its like I’m invisible to the pranksters of the cosmos. But if they see a busy, frazzled mom whose kids just spilled their happy meals all over the dog-hair covered floor, its like I’m a bright, red blinking light on the radar.

I have a vague recollection of my van in its pre-dog, pre-fast food days. My twin girls were babies, and I drove out to visit my friend, Micha, who has three kids that are older than the twins (soon she’d add a fourth and I’d add a third to complete our families).

At the end of our visit, Micha walked out to the van with me to help put the twins in their car seats for the ride home. When she looked in the van, she smiled and said, “I see your kids don’t eat in the car yet.”

Over the years, spurts of ketchup that fly out of those little packets have found safe places between the back bench seat and wall of the van just out of reach, tiny bits of goldfish crackers constantly re-materialize, and when one of the kids spilled an entire Sprite as I rounded a sharp corner, my first thought was, “Score! Its clear.”

Fantasies of a clean car still give me a dreamy smile. But those busy nights driving home from the kids’ activities, grabbing a quick dinner, singing to the radio, and the dog hanging out on the back bench seat, all add up to some really good times. I guess that explains why I spend an entire morning cleaning my car, only to welcome back the dog hair and more spilled ketchup between the seats.

“Mothers of Disabled Children” by Erma Bombeck, May 11, 1980

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

“Armstrong, Beth; son; patron saint, Matthew.

“Forrest, Marjorie; daughter; patron saint, Cecelia.

“Rudledge, Carrie; twins; patron saint…. give her Gerard. He’s used to profanity.”

Finally, he passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one, God? She’s so happy.”

“Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and independance. She’ll have to teach the child to live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.”

God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps, “Selfishness? Is that a virtue?”

God nods. “If she can’t seperate herself from the child occasionally, she’ll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word.’ She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

“I will permit her to see clearly the things I see — ignorance, cruelty, prejudice — and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, his pen poised in midair.

God smiles. “A mirror will suffice.”

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