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Wisdom from the Trenches PDF Print E-mail
Written by Gayle Nobel   
Saturday, 21 May 2011 21:50

Day 5

"Day 5??? Of what?" you ask. The blog-a-thon? "Did I miss the previous 4 days?" you wonder. "Where have you been Mrs. Autism with Attitude blogger?" you query. I have been very busy living life in the season of extreme ups and downs. Yet again. Wondering what color is surrender and how does it taste. Surrender is battling resistance. But I am getting way ahead of myself. 

It's Day 5 of yet another cycle. My son Kyle suffers from extreme cyclical anxiety type episodes that take him out of commission for 10 days at a time. Sometimes more.  Out of respect for his privacy, I will not go into detail here. They are yet another layer on top of his autism and the other challenges he faces. It seems unfair for one person to carry such a heavy load. Actually, it’s 3 people carrying that load if you count us, the parents. I know, I know, "It's All About Attiude" and life is unfair so you just gotta make the best of it.

Suffice it to say, life as we all know it in our home, is put on hold and we switch into survival mode during these cycles. I confess to breathing  a lot easier when they blow over.

I have been in survival mode for 5 days now and I am not yet seeing the light at the end of this tunnel.

I am surprised that I have gotten this far in the writing tonight. Good sign. I will continue, despite the potential for interruptions. Kyle is peaceful for a few moments right now. He listens to his sister’s latest CD and sings along. (www.LeahNobel.com) Her voice and lyrics are smooth like the chocolate melting  in the double dutch pan she sings about.

I have been accused  of being “real” and that’s what people often like about my writing. I take it as a compliment so don’t get scared if I let it hang out in this post. 

Confession: I have not been a particularly happy camper the last few days. In fact, I’ve struggled  and have many times, teetered at “the edge". Picture what your edge might look like. I think about yoga and holding a pose and feeling that shake and burn when you know you can't go any further and should consider backing off a bit. Circumstances don't always let you back off in real life though.

Kathy, my friend and coauthor, sent me the following piece of wisdom and I’m thinking it will be useful for all of you. I am still figuring out what it means to me and trying to apply it.

hey girlfriend...I've been thinking more about what you wrote and what is going on for you now with Kyle...and I want to say this..

I think that the universe is presenting you with an opportunity and a question.

"How deep is your commitment?"  

You've written two books about attitude with autism...and its easy to practice the tools when things are going well.  But it takes as I like to call it, using our life muscles, when things aren't going the way we want them to. So now its your turn.  And I believe that you can do it.  So can I. So can Frank.  So can Neil.  All we have to do is practice what we preach.

Aren’t friends great? What a gift this was. However, I confess to feeling a huge resistance when I first read it. So I have come back to it a few times, asking myself how I can go on to apply and live this wisdom. Lo and behold I come back to the very Oxygen-Rich Tools I have written about in Breathe.

About a month ago, Kyle’s music therapist asked me which Oxygen-Rich Tool  I would recommend if I was to pick only one. 

And the answer is..... 

EXERCISE!!!

This tool has worked for me time and again. There is no getting away from the endorphin boost you feel when you push hard and sweat. It just isn’t possible to feel as crappy, cranky, discouraged, or unhappy as when you started... even if you are feeling resistant. And guess what? If you are really pushing it, you are forced to breathe deeply at the same time. That makes exercise a twofer!

I share this because I was really in a low spot this afternoon when I set out on the hiking trail. The day had gotten off to a very rough start and I was feeling teary and angry at life on and off all morning. 

I plugged myself in to my music and set off in the Phoenix sunshine.  Often, when I hike, I prefer silence, focusing on the sounds of nature, my breathing, and my mind’s voice. Today, however, there was no way I wanted to hear the complaining and feeling sorry for myself, reliving the mornings events, voice. Music was a fantastic antidote.

My workout playlist got me going right out of the starting gate. Music and breathing was all I could fit in. I made it to the top in record time, whipped out 30 push ups on the rocks, and felt the stress oozing from my pores. I took some time to absorb the 360 degree view of mountains and clouds, remembering why Phoenix is known as the Valley of the Sun. All of a sudden, I felt good. Time to find a rock to sit on and breathe. More good feelings. My world had not changed but for a few moments, I had changed. A shift had taken place. Hmmm, surrender tastes kinda good.  My life muscles felt just a little bit stronger. 

I am grateful to my husband Neil for pushing me out the door to hike today. “You REAALLLY need to go hike." is exactly what he told me.” And he was most definitely right about that. 

Life was still the same when I returned home but I was a little bit different. My resistance had softened.... just a touch. That’s about all I can count on right now. Helllooo life muscles. I feel you guys.

 P.S. 

I may be going out on a limb here, but I am thinking of starting another blog-a-thon as of... today. Do I dare commit? I must be crazy, but writing is so healing for me and it might give me something to look forward to on the roughest of days. Hoping I can figure out how to fit it in when my energy is sapped. I think I can.  I think I can. I think I can.      What do you think?

 

Image 

Imagine me here today but 5 years older. :-) 

Last Updated on Saturday, 21 May 2011 22:48
 
Blessed? You bet! PDF Print E-mail
Written by Gayle Nobel   
Friday, 20 May 2011 20:17

Friday is once again, guest blogger day. Thank you Dinah for these beautiful pearls of wisdom.

Last night JJ and I went to a performance by Judy Collins. The double dating couple seated behind us were engaged in constant conversation prior to the show's beginning and all during a lengthy intermission between the opening act and main event. Actually, the conversation was between the two women. I am prone to eavesdropping on such interactions. I apologize for my rudeness and I rationalize that my ADD is at its root. However, a portion of their words gave me pause and today after working with one of my young clients I couldn't keep from ruminating on them. I believe these ladies were discussing the young adult daughter of another acquaintance. A remark was made about the daughter struggling in a class at junior college and some statement to the effect that college level work is rigorous and may have been beyond the girl's capabilities. A paraphrase of the ensuing words would be: "You know, your children are successful. My children are successful. We are blessed to have such successful children."

Their words felt somewhat irritating at first. The woman didn't elaborate on their children's success or successes so I can't really determine what standards or criteria were being considered. I could imagine, though, from their demeanor, apparel and previous conversational topics that their children's success most likely had to do with academic and economic achievements. How fortunate for them. My thoughts immediately skip to the children and parents with whom I've worked over the past 39 years. Oh, my! In the world of developmental disabilities, special education, autism - the standards and criteria for success have expanded beyond the norms. My students, clients, friends and their parents so enrich my life. And their successes are not measured in terms of academic or economic achievement. If there are such equations - if women are blessed because their children are successful - then are women whose children don't attain 'success' fall into an unblessed or non-blessed chasm? Irritating - that premise is irritating, not to mention faulty.

By most societal standards my own three children are marginally successful as adults. Only one of our adult sons holds a conventional job - and it is unconventional from most perspectives. Another son is a professional musician who plays gigs, gives music lessons, thinks deeply. My youngest son forsook a teaching career to nanny (or 'manny' as he calls himself) his niece and nephew. Financial or material success is not much of a consideration for any of them. Remarkably, I feel so blessed to be their mother. If they are happy on their life's journey - how can I not feel blessed. 

~~Dinah Ross Jones, Speech Pathologist

Note: Dinah was my son's very first speech therapist 26 years ago! Later on, we ended up having a mutual friend and discovering we live in the same neighborhood. Gotta love life's serendipitous connections.  

Last Updated on Friday, 20 May 2011 14:53
 
A Mother's Prayer PDF Print E-mail
Written by Gayle Nobel   
Friday, 13 May 2011 17:45

Happy Friday!

After a rough patch with Kyle which took a lot of my emotional energy, I am now back to blogging! I have missed writing very much.

One of the Oxygen-Rich Tools in Breathe is Laugh. Laughing and hanging on to your sense of humor is an essential milepost on the "loving and living well with autism" path.

Here's something to get you going...

A Mother's Prayer from Tina Fey's book, Bossy Pants

"First, Lord: No tattoos. May neither Chinese symbol for truth nor Winnie-the-Pooh holding the FSU logo stain her tender haunches.

May she be beautiful but not damaged, for it’s the damage that draws the creepy soccer coach’s eye, not the beauty. When the crystal meth is offered may she remember the parents who cut her grapes in half and stick with beer.

Guide her, protect her:

when crossing the street, stepping onto boats, swimming in the ocean, swimming in pools, walking near pools, standing on the subway platform, crossing 86th Street, stepping off of boats, using mall restrooms, getting on and off escalators, driving on country roads while arguing, leaning on large windows, walking in parking lots, riding Ferris wheels, roller-coasters, log flumes, or anything called “Hell Drop,” “Tower of Torture,” or “The Death Spiral Rock ‘N Zero G Roll featuring Aerosmith,” and standing on any kind of balcony ever, anywhere, at any age.

Lead her away from acting but not all the way to finance. Something where she can make her own hours but still feel intellectually fulfilled and get outside sometimes and not have to wear high heels.

What would that be, Lord? Architecture? Midwifery? Golf course design? I’m asking You, because if I knew, I’d be doing it, Youdammit.

May she play the drums to the fiery rhythm of her own heart with the sinewy strength of her own arms, so she need Not Lie With Drummers.

Grant her a Rough Patch from twelve to seventeen. Let her draw horses and be interested in Barbies for much too long, For childhood is short – a tiger flower blooming magenta for one day – And adulthood is long and dry-humping in cars will wait. 

O Lord, break the Internet forever, that she may be spared the misspelled invective of her peers and the online marketing campaign for Rape Hostel V: Girls Just Wanna Get Stabbed.

And should she choose to be a mother one day, be my eyes, Lord, that I may see her, lying on a blanket on the floor at 4:50 A.M., all-at-once exhausted, bored, and in love with the little creature whose poop is leaking up its back.

“My mother did this for me once,” she will realize as she cleans feces off her baby’s neck. “My mother did this for me.” And the delayed gratitude will wash over her as it does each generation and she will make a mental note to call me. And she will forget. But I’ll know, because I peeped it with Your God eyes."

Last Updated on Friday, 13 May 2011 17:46
 
Giving Back PDF Print E-mail
Written by Gayle Nobel   
Friday, 04 March 2011 16:18

 My guest blogger this week is Carrie Bell. Carrie is a writer, editor, and parent. 

I’d like to share a few things I learned about giving from my mother-in-law, who passed away last August. For most of her life, my husband’s mother was a strong, independent, high-energy person who was better at giving than receiving. She couldn’t do enough for me and other members of her family, but when we tried to reciprocate, she would say she had everything she needed. I felt I would never be able to repay all of her kindness to me. You might be thinking, “What a good problem for a daughter-in-law to have,” and it was. But I am a giver, too, and the imbalance between us made me a little bit uncomfortable.

Then along came dementia, the brain disease that slowly robs people of their memory and ability to perform activities of daily living. In the early stages, my mother-in-law knew something was wrong. During visits, we noticed lists all over the house intended to remind her of things she had easily remembered the year before. When to put out the trash cans. How to start up the computer. The steps to prepare a dish she’d cooked a hundred times. There were also changes in her mood. Always energetic and confident in the past, she became increasingly anxious, paranoid and depressed.

I had never seen my mother-in-law so vulnerable and so in need of assistance. This was a terrible and unexpected turn of events, but it was also my opportunity to finally “give back.” At first, her independent nature made her resist my efforts to help. She had never let anyone cook for her, clean her house, or take her grocery shopping. Over time, though, the resistance fell away. Her face lit up when I arrived at her door. We went on walks, shopped together, and drove to her doctor’s appointments. She told me fascinating stories about growing up in Germany between the First and Second World Wars. 

In that sad and difficult time, as my fiercely independent mother-in-law became completely dependent on others, the two of us became closer than we had ever been. I never expected that she would allow me to help her eat, dress and attend to her personal hygiene, but eventually she did. I discovered that I could set the tone for our interactions by approaching her with a smile and a note of enthusiasm in my voice for whatever we were about to do. I learned not to correct her mistakes in memory or behavior and not to focus on what was being lost to her disease. I also learned to be patient, not to rush, and never to be angry with her. She hadn’t asked for this disease, after all. 

Our best times came when we were both “in the moment.” When we sat in a gazebo in the backyard of the group home where she spent her final days, I often saw her find joy in the smallest things. An airplane flying over. A flower in full blossom. A bird in a tree calling to its mate. By staying “in the now,” I found myself enjoying those simple things, too. 

On reflection, I realize that during the period of my “giving back,” my mother-in-law may have still been giving more than she was getting.  And I am grateful.

 
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