Archive for the ‘Motivation’ Category

FOREVER YOUNG (Eddie Vedder)
September 20, 2018

Cole’s turning seventeen today.  Yes, that’s right, the boy is seventeen years old.

It’s hard to believe that we’ve been riding the wave of his life for seventeen years.  When we became parents to Cole in particular, our own lives ceased to be our own lives.  I think it’s a reality of parents with 24/7 children in a way that is vastly different from parents of typical children.  In many ways, kids like mine are forever young.

Cole’s at an age where most his peers are wildly independent.  They’re staying home on their own, managing much of their social lives and school activities, and many of them are driving.  They’re all starting to contemplate the move from high school to college and hunkering down with their studies to ensure they have top grades, interesting community service in place, and strong SAT scores.

Seventeen looks very different in our family.  In some ways it doesn’t look much different than sixteen, or fifteen or fourteen, which in all honesty breaks my heart, because I know eighteen will likely feel the same.  Cole has delays in his development and will likely never pass the four foot mark.  In many ways he’s neurologically on track, but in other ways his comfort is still found in the same things that brought him comfort and joy when he was little.  His needs remain high, though to us fairly simple and second nature.  We struggle with the same obstacles – encouraging him to want independence, to use his voice (his Tobii – an eyegaze voice output device), and to develop new age appropriate interests.

Yet, he seems content with his life.  He loves high school and has made some good friends who he sees outside of school too, while still maintaining some of his life-long friendships, and he does well in his classes, excepting his lack of interest in using his Tobii has proven to be a frustration to his teachers and peers as well.  Outside of school he’s still happily participating in iDance and enjoying playing in his Champions baseball league.

He’s developed an interest in photography thanks to his summer spent hanging with Nelson.  Art has always been something he enjoys dabbling in but the interest in photography is new and we’re hoping to help him to expand it.  We bought him a camera that he can operate using an iPad/iPhone as both the viewer and button or a switch to take the shot and are keen to see where this hobby takes him. In typical teen fashion, any curiosity we show in his photography is met with eyes rolling and the shut down…

Ebbing on seventeen has also broadened his willingness to expand his musical repertoire and his TV viewing.  There are still times where only the music of Ralph’s World or Sesame Street or endless Holiday music will satisfy him but there are other times, more frequent times, when I can introduce new bands or playlists to him and he’s pleased.  I’ve been having the success with his TV down time. I’m not willing to watch endless hours of Little Bill or even The Barefoot Contessa, so constantly try new things and movies and lately, as he neared seventeen, he’s been a willing viewer. It gives me hope.

I’d love it if he’d show an interest in books.  I feel like resources like Audible could give him some independence and off screen time but still engage and entertain him but he’s not quite there yet.  I love to fall into a good book and so does my husband. To have Cole develop the love of a good book would please me to no end.  Oh the places, people and adventures he could explore…

Turning seventeen brings him a year closer to being an adult and having more adult feelings and curiosities. He has always been very fond of girls and has had crushes here and there over the years but this summer he fell hard.  It’s unchartered waters for us and I don’t really know what romance looks like for him.  I feel like it needs to be treated differently than the way I facilitate or manage friendships, but I don’t know exactly what that means.

I am keenly aware that much of my mixed feelings about Cole aging, or not, are just that, my mixed feelings.  Feeling blessed to have my son in my life, and loving him more than I can possibly convey can live with me sometimes mourning the loss of typical experiences both he and I would have had if things were different.  I don’t know if he considers “what if” in his own mind, and I avoid it when I can, but I’m human and I sometimes can’t help but wonder, or be sad.

IMG_1768My boy is seventeen today. Yes, seventeen years old!  He’s remarkable and brings grace to every day of my life.  I celebrate him today and everyday and hope that he’ll remain forever young…

TALK TO ME (Chris Isaak)
September 15, 2018

Cole’s first junior year report card arrived yesterday.  Straight A’s. He’s fairly consistently receiving A’s and a very occasional B on his high school report cards and always with E’s, and is always proud of himself when the grades are revealed.  We are proud too, of course.  For Cole, the grades are both a mix of subjective grading, his effort, and his understanding of the given subject.  He has modified work and the benefit of one on one class time with his Special Ed (SpEd) teacher.  It doesn’t diminish the grades and is certainly reflective of the attention he puts forth in class.  He takes a fair amount of pride in maintaining his grades and in the attention he receives for doing so.

I just wish he put forth the same interest and effort in developing some of his communication skills and independence at home.  He would gain so much by engaging in conversation with people outside of school, including me and his dad.  He has friends who desperately want him to use his Tobii (eye gaze generated voice output device) to talk with them.  Teens, even understanding, kind hearted teems, don’t always welcome the parent invasion when they’re hanging out.  Having time with friends, independent of a parent or even of a support adult to help facilitate conversation, would be so incredible for him.  It’s such a valuable facet of friendship.

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I’ve gone so far as to suggest to some friends that they tell him that they won’t chat with him until he starts chatting with them using his Tobii.  His friends are too sweet to listen to me and continue to talk to him despite his aversion to the Tobii.  He met a girl this summer who is very similar to him in diagnosis and also uses a Tobii, though she is happily reliant upon it and uses it well and often. I’m told she pressed him to use it during summer school and he was slightly more receptive, which makes me hopeful that he with the right motivation he’ll warm to it.

I understand part of his reluctance, or disdain, for the device.  Cole’s a people person.  He’s very keen on eye contact and adept at communicating some of his needs and reactions through small sounds and various facial expressions and smiles.  The Tobii obstructs his direct view of people he’s “talking” with.  It’s also taxing to use, both physically and mentally, so an element of laziness factors in too, especially if he’s asked to use Tobii with his dad and I.  We’ve developed a strong understanding of him, but even with us there’s so much left to our interpretation.  He’s often just not bothered enough to be frustrated or care. I really wish he were.

I just want him to use his voice…to express his thoughts, opinions, and needs.  I want him to deepen his friendships by opening them up through mutual communication and the intimacy that comes from friends sharing. I want him to engage new people in conversation or to initiate conversation. I want him to show interest in other people by asking questions or simply saying “Hello” aloud.  I want him to expand upon his education by using his voice to express his knowledge and understanding.  I want all of these things for him…

If only he did…

Anthem (Leonard Cohen)
September 14, 2018

There is a crack in Everything. That’s how the light gets in…

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It’s one of my favorite song lyrics from the Leonard Cohen song Anthem, but a long standing notion that the crack or imperfection is what gives us a path to greater existence. Rumi, the Sufi poet and philosopher, has a similar oft quoted line, “The wound is the place where the light enters you.”, invoking the same idea of imperfection being a road to enlightenment.

I feel like this is the endless journey I have encouraged myself to pursue.  It’s one of acceptance and betterment and I hope to travel it for the rest of my life.  For most of my teen and adult years I’ve struggled with confidence, self-love, and frequently battled myself and losing.  I tend to be my own worst enemy and harshest critic.  I allow my insecurities to shout the loudest and engage them to idly defend me when I feel put upon or angered.  They’re not my best voice because they prevent me from seeing myself or allowing me to be vulnerable.  They’re cruel and lash out.  They deflect.

I’m trying to teach myself to step back and react from my heart even if it means admitting I’m culpable in an action or behavior or that I myself feel hurt or scorned by someone or an action.  Decades of unfettered reaction are slow to turn around but it’s an effort worth taking because when I’m successful, when I approach conflict with calm and sincerity, it’s resolved amicably nearly always.

I want to be a good example for my son, an example of someone who has flaws but is constantly trying to evolve and resolve and flow.  I want him to see that he can be fluid in this way and open his heart and mind to be kind and caring even in conflict or stress.  I want him to know that the pursuit of enlightenment is something more personal and internal for every one of us, but that the result of this endeavor results in a gentler, kinder community and world.

When I was a kid, I was often as described as “nice”.  I kind of hated it because I likely wanted to be thought of as the pretty one or the cool one or the smart one.  No, I was the nice one.  In retrospect I greatly appreciate the compliment.  We should all strive to be the nice one. We should all let the light shine through our cracks…

 

 

 

FEELIN’ GOOD (Nina Simone)
September 13, 2018

I’ve gone through another period of inconsistent writing and I find I miss the outlet terribly.  Life gets in the way of my creativity!  It inspires it as well but when writing is more the hobby and work and family responsibilities fill much of each day, hobbies take the back burner.  Nevertheless, I’ve challenged myself to make a bigger effort to sneak in a bit of writing each day.  The truth is, it benefits my mind and soul, so it’s a valued effort.

I turned 54 on the 4th…While I love birthdays, particularly other people’s birthdays, I don’t generally feel the creeping up of the years to be bothersome.  This year though it did make me feel introspective. Though I do have some self-awareness and keen sense of the things I need to do maintain my health, sanity, and joy, I do have a tendency to shirk some of the responsibilities that are required to maintain myself.  This year I made a decision that I will shirk less and go through my 55thyear taking better care to make time to exercise, write, enjoy my family and friends and to step out of my comfort zone as much as possible.

I’ve actually been attempting to try new things and put myself out there throughout the past few months.  Nothing radical, small steps to expose myself to new experiences, places, and people. It’s been a wholly positive endeavor. I took a girl’s night out grilling class and wound up sharing a table with two women, both of whom are speech pathologists and one of whom had coincidentally worked at my son’s school for a brief time.  What are the odds?

I also took a chance and applied to a writing program that Imagine Entertainment just launched. Beyond the lengthy application, that included a video component, I had to provide a project I would like to develop (I have a TV series idea that I’m working on) and other writing samples.  I was not among the handful selected (over 4,000 writers applied), but I feel proud that I put myself out there and gave it a shot.  I plan to try again for their next session in February.  It will give me some time to get my ideas in to a better format and who knows???  Another coincidence, my company moved into the same building as Imagine a couple of weeks ago!

I look forward to having a successful self-motiving, self-aware, self-caring, self-sharing year.  I want to be present and well for myself, my family, my friends and for any new challenge or experience that comes my way.

Cheers!

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WONDERFUL WORLD, BEAUTIFUL PEOPLE
October 16, 2017

“Take a look at the world,
and the state that it’s in today,
I am sure you’ll agree,
We all could make it a better way.
With our love put together,
Ev’rybody learn to love each other,
Instead of fussing and fighting.”
Jimmy Cliff

There have been so many natural and human disasters around the world recently. It seems endless and it seems impossible to know what to do to help besides throwing whatever money one can afford to throw. But that doesn’t feel like it’s enough and it precludes any direct connection with the victims, and fall out.

After seeing the devastation in Florida, Puerto Rico and the US Virgin Islands, and the tragic aftermath of the senseless shootings in Las Vegas, or the massive loss of life in Somalia due to two car bombings, we look to one another for answers, comfort, and relief. We hold our loved ones tighter and make effort to let those we love, know we love them. We join campaigns and donate to organizations to provide assistance. We hope that our own cities won’t be the next struck by any kind of tragedy, natural or manmade. And we then we go about our lives feeling we’ve helped.

And we have. Being kind to one another is important and providing much needed funds to relief efforts is necessary. Going about our normal daily lives is also important both for our communities, our families, and us.

But there are some people who think outside the box and make effort to effect change and to impart a different kind of care, the care of action. I am blessed to know one such angel, and I want to share what she did in the wake of the Las Vegas tragedy. She made a pilgrimage of kindness to Las Vegas; where she did fifty-eight acts of kindness, encouraging each recipient to pay it forward themselves, in honor of each of the fifty-eight victims.

The deeds ranged from surprising random diners in Flaming Fajitas with gift cards to cover their meals, to presenting flowers to a senior in an assisted living home, to paying for haircuts at a local Fantastic Sam’s, to bringing pizzas to the first responding police station, to providing her cab driver with a generous tip, that he then donated to a collection his company had going to provide aid to the victims, and so much more. Each deed was accompanied by a note with the name, hometown and age of the shooting victim she was honoring. Many of the recipients had stories of their own to share with her and ideas for paying her kindness forward on their own.

She touched an entire city. She connected with people on a whole different level. The local paper caught wind of her mission and wrote about her. She shared the journey on Facebook and had lots of supporters wanting to help facilitate her passion. She took the idea of helping a step further than most of us even conceive. I know her to be one of the kindest, most caring, friendly, enthusiastic people I’ve ever met and I’ve been inspired by her since she came into my life. I aim to think outside the box like she does. I hope you will find inspiration in her actions too.

58 Acts of Kindness

JUST LIKE STARTING OVER
September 19, 2017

I’m one month out, post surgery. I got the clearance to begin easing back into physical activity. I can walk with vigor, exercise moderately, and tend to some of Cole’s needs (still not quite ready for heavy lifting, but can move towards it over the next few weeks). I’ve been back in the office since the start of the third week. I tired quickly at first but I feel like myself again.

Yesterday all of the surgical tape was removed, and I got my first clear view of my new self. While the procedure was prompted by health concerns and constant pain, I must say the superficial benefits of it are pretty amazing. I actually have breasts that fit my frame and compliment my body. I feel lighter, stand taller, and am completely inspired to get the rest of me in better shape to better suit my new boobs. All of my clothes fit differently too.

As I wrote previously, the aching pain I have suffered from for twenty odd years is gone. Though I haven’t been able to lift Cole yet, I can tell that not having so much body in front of me, will be an asset in lifting him safely and more comfortably, especially as I move deeper into my fifties and beyond. The need to lift him and support his body whilst taking care of personal needs and dressing is not going to end.

It will be several months before I’m completely healed, and at least one or two more before my new breasts settle into their final size, but even just four weeks in, I have to say it was worth all of the hardship I’ve inflicted on my poor husband and child, who have had to make adjustments to their routines to accommodate my needs. At the end of the day, it’s just a few months in the lifetime we will continue to share. From here on out, each day will give me a chance to get stronger, healthier and to become more the self I dream of.

Doing something this major, largely for myself, has taught me that it’s okay to take chances on myself. I view it as an opportunity to reset some of the habits I’ve fallen into over the years of my adult life. I am eager to continue transforming myself both physically, through better eating and regular exercise, mentally, by engaging in things that interest me and feed my soul, and emotionally, by trying to be a better wife, mom, friend, daughter, sister – a better me. My guys and my friends have shown tremendous kindness, support and love during this process and I want to keep that alive in all of my relationships.

Who knew that new boobs could lead to such a whole being revolution?

SHARP DRESSED MAN
July 24, 2017

My boy is growing up.

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Sometimes it’s hard to see the subtle changes in his personality, demeanor, and interests as he ages. There are delays to be sure, and some changes are diminished because he simply doesn’t have the communication skills necessary to adequately express everything that he’s feeling internally. I like to think, hope, that we’ve all (me, Dan and Cole) got some of the communication down to where the important things, especially, are eventually made known.

This past weekend, after running a few necessary errands, Cole vehemently did not want to go home. Having groceries in the hot car, we agreed to stop at home so Dan could run things inside, while I talked to Cole about where he wanted to go. He actually really seemed to need to go somewhere. Turns out he really wanted to go to the mall to do a little clothes shopping for himself.

I’m a big fan of on-line shopping, especially for his clothes. He hasn’t shown much interest in what he wears until recently so it works out pretty well. I made a promise along time ago not to dress him stupidly and I’ve managed to keep it thus far. I frequently ask for his opinion of things and recently he showed interest in selecting a new swim suit ( a cute crew cuts pair of navy trunks with little orange embroidered stars) and rash guard for an upcoming beach get-away.

Needless to say, the mall excursion came as a bit of surprise. He happily searched through Gap Kids looking for, what exactly, I don’t know. We left with a cheery striped polo shirt and a pair of madras plaid Bermuda shorts. Both confidently selected by the boy. He tightly held on to the bag as we continued through the mall (and even into the car). We didn’t find anything else he was keen on, and he made it pretty clear that this trip was not intended for parent browsing or shopping (though his dad did manage to snag a little something on sale at Lucky, despite protests from the boy).

He proudly wore his shirt to summer school today, and has already requested that it be cleaned and ready to pack for our trip. I’ve promised to involve him in any future shopping for his needs. It adds another layer to the process but it will be interesting and fun to see where his taste takes him. Just another reminder of how important it is for him to have every opportunity to express himself, with wardrobe, words, and whatever other ways he finds.

IF MUSIC COULD TALK
January 6, 2016

I realized today that I haven’t provided the songs and artists that title my blog entries for quite a long while. I thought I’d use this rainy gloomy day as my chance to get you caught up with the songs and tomorrow with a new playlist for Cole for January.

Music plays a huge part in our lives. It was always in my house growing up and my dad used to take me to see live music, heavy on the jazz. I discovered punk rock in the late ‘70’s, which influenced my youth in a big way. While I like all kinds of music and as a teen, young adult, went through phases where in addition to the punk rock, I’d listen to Patsy Cline or the ‘60’s girl groups incessantly.

My husband too grew up around a lot of music. He played in bands, sang with a somewhat tongue in cheek quartet and spent much of his formative years seeing bands in clubs in the Baltimore/DC area.

Music has been in Cole’s life from the start. We sang to my growing belly, and broke out every Beatles and Elvis Costello song we could remember once he was born, singing to him in the NICU while he was healing and recovering those first tenuous frightful weeks after his birth. He’s been exposed to everything we love, and shot down most of it, opting for discovering his own favorites. Our influence doesn’t really interest him but he does love music and is interested in exploring which is why I started creating monthly playlists for him.

When I started blogging last year, I decided to try to title each blog with a song title that somehow, in my mind, related to the blog topic. Following are the titles with the song artists for the past couple of months, including today’s:

If Music Could Talk – The Clash
Girl, Afraid – The Smiths
Innocent – Taylor Swift
Christmas Present – Andy Williams
Smile – Lily Allen
Thank you – Sly & The Family Stone
Magical Mystery Tour – The Beatles
I Am The DJ (Series 11) – David Bowie
Say It Isn’t So – Hall & Oates
Ball of Confusion – Love & Rockets
Frustration – Soft Cell
That Old Feeling – Frank Sinatra
All Together Now – The Beatles
Run The World – Beyonce
Love & Happiness – Al Green
Sweet Dreams – Eurythmics
Baby Elephant Walk – Henry Mancini
Reinvention – Superchick
I Hate My School – Redd Kross
Phenomenal Cat – The Kinks
Restless – The Bangles

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GIRL AFRAID
January 5, 2016

The New Year always brings thoughts of improvement, change, and resolve. It always seems like the time to devote oneself to overhauling ourselves, our finances, our jobs, our lives, and despite my reeling against making resolutions, I do find myself in that same contemplative mindset.

The big ah ha for me is that I am my own worst enemy. I seem to get in the way of my own success or interest far more often than I don’t. A big part of my problem is that I have become a creature of comfort. Where I once barreled into things head on, I now research, create excuses, and find myself sitting resolutely where I am comfortable.

Comfort however should not be construed as content or satisfied. It’s simply a place where I know what is expected, or how to do maneuver, or how to behave. Some of this comes naturally with age and some of it comes from trying to maintain some sort of control in a life where I often have very little and some of it comes from fear.

Fear can be debilitating. I don’t think I’m that extreme but I do have a level of fear of the unknown that frequently keeps me from reaching a perceived goal or intention, or from trying new things.

I really started thinking quite a lot about this as we began contemplating our annual family trip to Mammoth so Cole and Dan can ski. We’ve been doing this for several years now with three or four other families in tow.   I learned to ski when I was nine and skied often until I was in my early 20’s. I was actually pretty good and really loved the sport.

I haven’t skied on any of the recent trips. The first year my excuse was that I needed to be available for Cole, who skis with an amazing adaptive program, Eastern Sierra Disabled Sports, in case he wanted to stop or needed anything. The next year, I got it in my head that I would fall and hurt myself and it was all over.

This year, I’m skiing. So what if I fall. I’ve fallen lots of times in the past and I know how to fall and to get up. I’m not that fragile and I want to have fun skiing with my husband and friends.

I do the same sort of thing to myself concerning my weight. I know how to be the fat girl. I know how to be the curvy one. I know how to handle myself with extra padding. When I start to lose weight and am working towards becoming fitter, stronger, and yes, thinner, I sabotage myself. The minute it becomes noticeable, I feel less confident with the attention and begin the slow decline of success. I’m not good at envisioning myself at my goal where I will likely be less comfortable, even if I’m healthier and smaller.

This past year or more I’ve actually managed to keep weight off despite my best efforts to thwart myself.   I’m intending to rejuvenate the efforts to improve my health and to lose weight, to lose baggage. The reality is that there is more to fear in staying where I am, as I am, in terms of longevity. It’s time to learn how to deal with my own discomfort and my own pathos so that I can become a support to myself, not a hindrance.

I’ll save some of the other fears for another time. I know I’m not alone in this pathos and I know it’s a challenge to get out of my own way, but I face challenges all of the time as Cole’s mom and I don’t view them the same way I view my own. I would move heaven and earth to make every day of his life better, easier, more fulfilled. I just need to try to give myself the same care and attention. The better off I am, the better able I am to rise to his needs.

Here’s to a New Year! One filled with first steps, second steps, and new steps.

SEE THE LIGHT
September 11, 2015

This week has been all about filling my mental toolbox.

I’ve come to realize that if I want to successfully help Cole with is anxiety I need to arm myself with some useful tools and strategies. My approach, generally to try to reassure him that everything is going to be all right and to spell out every step of each day so that he has a complete understanding of the days expectations isn’t working, even just a little bit. Last night I started reading a book about dealing with kid and teen anxiety and they eschewed my instinctive actions practically from the first page, so I have some reading to do this weekend to see if I myself can get a better understanding of anxiety and methods for supporting Cole.

I am also adding some creative tools to my box. I have quite a few DIY home projects I want to work on and while I’m not necessarily a builder, designer, or mason (some involve brickwork!), I do have some visionary qualities and want to build on that. Saturday night I’m attending an art party where I’ll paint and drink wine, both with the intention of sparking my creativity. I’m not a painter, but it sounds fun and I’ve come to realize that I don’t pursue fun enough. I need to play more!

I’ve also recognized that I have a tendency to procrastinate so I’ve been working on moving myself forward instead of being stagnant. The summer left me a bit shell shocked and I felt like I didn’t accomplish any of the little projects I had wanted to take care of whilst being tethered to the home front. Now they are all screaming at me to take care of them!  Each little task that gets handled makes me feel lighter, and brighter.

Even though things are still in flux and Cole’s still not back to his old self entirely, I realized that me standing still isn’t going to help anyone.

On a really positive note today, Cole happily stood up for about ten minutes at his physical therapy evaluation…Maybe he realized that moving forward even just upward, is better for him too!

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