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.

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.

BABY ELEPHANT STEPS
November 5, 2015

Cole’s doing an intensive two-month long, three days a week, bout of physical therapy. He’s getting up on his feet, standing and stepping using a Lite Gait treadmill system. So far he loves it. It’s hard work and already this week he’s doubled his walking distance. After four months of largely reclining on a bed or sitting in a comfy Chill Out Chair, it’s got to feel good to get his body moving again.

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This is a boy who for years would repeatedly respond to almost any question with “I want to move my body” on whatever communication device he happened to be using at the time. He has always preferred to be on his feet, whether supported by equipment or human.

Until the surgery, he even liked to move when he was sitting, the “kicky dance” as we fondly call it. When he hears music he likes, or sees something funny or entertaining, he would kick his legs and feet whilst drawing his hands to his hips – think River Dance but seated. He started doing this when he was baby and continued up until the surgery. We are just now starting to see the tiniest bit of foot action, giving us hope that the kicky dance will return. It’s adorable, and the smile that most often accompanies it is beyond infectious.

I feel relief in the joy he seems to be taking from doing the physical therapy. While his endurance still needs some building (he’s exhausted at the end of the day, which makes evenings a bit trying for all), he’s finally starting to show signs of psychological recovery from the surgery. His body and mind did not heal at the same rate but it seems like the mind is starting to catch up finally.

The holiday season is a time of year Cole loves, giving me lots of hope that between all of the strength and walking training, and his love for all things holiday will have him completely back to his happy, strong, amazing self in the New Year! I’m also holding on to hope that we can stave off the constant listening to holiday music until after Thanksgiving…only 21 days…could happen…

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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ME, MYSELF & I
April 16, 2015

Recently my frustrated husband had a conversation with Cole where he told Cole that he was behaving like a selfish child and that he was only thinking of himself. It got me thinking and I realized that in many ways it’s true, he is selfish. It also made me wonder if this is something that is common amongst kids with special needs. By nature of their condition(s) they require additional attention and care, sometimes at the expense of someone else’s needs. It’s just a reality of their lives.

I don’t think that Cole is inherently selfish or narcissistic but I think it’s hard to not exhibit these tendencies when you’ve had people (your parents) basically catering to your every need for your entire existence and bolstering your self-esteem at every opportunity. Because he isn’t physically able to provide some of the niceties or support or even comfort, he’s not really developed a strong means of expressing empathy, sympathy or emotions using other tools. The toll of some of his brain injury also makes it hard for him to completely have a handle on his own emotions or his interpretation of other people’s feelings.

At the heart, Cole is a loving, kind kid but some of his behaviors feel manipulative and selfish. He doesn’t often recognize the impact his behavior, especially bad behavior, has on the other people around him. He’s not prone to big tantrums or anything that dramatic especially in public, but he does express anger and frustration with some choice actions like teeth gnashing, biting, and striking out with his arms or legs, often directed at his dad and me. It’s not pretty and it’s not something we condone but it’s also not something we’ve yet figured out how to maneuver. Punishment doesn’t serve us well because he doesn’t care to associate the punishment with his action.

Sometimes his lack of recognizing that there are other people who likewise matter simply translates into outright rudeness. We might be on the phone with his grandparents and when he tires of the conversation or feels ignored, he reacts with frustration by grinding his teeth and vocalizing by shouting or whining. He’s unwilling to accept that not every conversation will be about him or will interest him.

I can’t help but wonder if this something we haplessly fostered. All children become the center of their parents universe, but when you have a child who needs you for everything, the tendency is to pour everything into them and unlike typical children, who gradually become more and more independent, your child continues to need your dedicated attention, which can also be a source of frustration in their own desire for independence. You want to make their lives as rich and full as possible, and you want them to feel loved, cared for, and empowered. But where is the balance?

BEAUTIFUL BOY
March 23, 2015

It’s National C.P. Month…Which of course has me thinking about the effect it’s had on my son’s life, and mine. I know the inclination is to feel badly for us however you’d be surprised that overall much of it’s influence in our lives has been positive. Much as I wish Cole’s life could be different for him, I can’t go into that “what if” place because ultimately, I can’t say that he’d be the beautiful, amazing boy that he is if things were different. It’s a slippery slope…

I saw a post on The Mighty where they asked people to write a letter to the diagnosis of their child, themselves, etc. I tried, but it ended up feeling like I was defining Cole by the diagnosis and he’s anything but that. In the end, the letter is to him:

It’s been almost thirteen and half years since we first met. You arrived in my life unexpectedly and immediately won my heart and shook me to the core. From the moment the doctors stopped using hours and days as markers of your future, we started to do our best to parent. We changed diapers, quickly learning to maneuver around the tubes and wires that were attached to you.

We held you as often as we could, talking to you and singing whatever songs we could recall – Lots of Beatles and Elvis Costello. You probably thought your name was Allison for a while there! Bringing you home, after five weeks in the NICU, was a huge milestone and meant lots more adjustments and routines. We learned to be adaptive and creative and most importantly we learned to accept help from others.

Doctors gave grim prognosis of what your life might look like, but you had other ideas and we were none too happy to support your every want, need and whim. You’ve thrived over the span of your short life. You’ve exceeded every expectation doctors had for you, and you have warmed the hearts of everyone who crosses your path, is touched by your smile, or delighted by your laugh.

You’ve never accepted that you had limitations. You find the way that works for you and you go for it. You lead a life not unlike what is considered typical. You’re a good student, a great friend, and an avid athlete. Though you have challenges other kids don’t face, and you’ve had to endure therapies, surgeries, and recoveries most kids don’t have to deal with, but you do it with grace and usually with the knowledge that whatever it is you’re having to do is ultimately only meant to better your life, strengthen your body, or enhance your day.

You inspire me on a daily basis and your influence has made me a kinder, more accepting and caring person. You also humble me. I understand that I too need support and that it’s not a failing to accept or need help. It’s a blessing to have people who I can count on to be present in my life, to listen to my woes and sorrows, as well celebrate in my joys. Your influence made me recognize that I value the strength that is gained in vulnerability.

To say I love you only touches on how indelible an impression you have left on me my dear boy. I am thankful for you every day and so proud to be your mom.

SEE ME, FEEL ME
February 23, 2015

My husband tends to keep things close to the vest. He’s not as openly effusive as I am and he doesn’t readily share his thoughts about our family life, preferring to keep them private. We’re different that way. I think he internalizes things a bit too much, and he thinks I share too much – somewhere there’s a balance and it seems we both have different needs in terms of the kind of support we want from beyond our family of three. Strangely, despite the disparity in our coping, it works. We always have each other. In a rare share, he wrote the below piece for a fundraiser our school puts on each year. Sadly, he was in Wales visiting family so he missed the reading. Much of the audience was brought to tears and it was well read by one of other dads, who, besides being a talented orator, also completely related to the experience which brought a great deal of heart to his reading. I’m sharing with permission…

As written by my husband, and read by Benjamin Bratt at our annual CHIMEapalooza Event:

If you saw my family walking through a mall when my son was a baby, we looked just like any other family (my Hollywood good looks could be distracting, but otherwise we looked like your typical family.) We had the stroller and the packed diaper bag, but if you rifled through it you might see syringes and gravity bags for tube feedings next to the wipes and cloths.

As my son got older and outgrew the stroller, our outward profile changed, a bright orange wheelchair replaced the stroller, and friendly smiles were replaced with odd stares as we walked through the mall. It seems the general public is not accustomed to seeing children in wheelchairs out and about. Kids were generally curious and often asked questions, “What happened to him?”, “Why is in a wheelchair?”. To this my wife would smile at them, sharing “This is Cole. He’s four. How old are you?”, or explaining “Cole’s muscles work differently than yours and needs the wheelchair to help him get around.”, or “He understands everything that you are asking, so you can talk to him and you’ll see his answer with smiles.”. And on cue, Cole would flash is light-up-the-planet smile, and make a friend.

Yep, kids were a breeze. More often, adults would lock gaze on him and practically walk into a pole, mouth agape, like they couldn’t figure out how a kid in a wheelchair managed to find his way out of the house. For me, still wading through the newness of parenthood and the rawness of my own fears for Cole’s future, their judgmental stares caused me to try to protect my family by glaring back at them in my attempt to communicate to them that their stares hurt. They made us feel somehow less than, not welcome in public, and so much worse. I raged inside because I wanted to protect my boy from that feeling. It broke my heart to have people look at him like that with so much intensity, but actually not see him at all. Not see the bright, funny, beautiful, kind, open child that was sitting right in front of them.

Over time it just ground me down, having to summon that glare, giving so much power to the confused and small-minded reactions of passers by. Simultaneously Cole started the CHIME infant toddler, and then the lab pre-school, and finally CHIME Charter. We became part of welcoming community so much bigger than our little family, our tribe as my wife calls it. I learned over time that no matter what or particulars, we all face challenges and we all feel the weight of our hopes and dreams for our children. Most importantly, everyone has good days and bad days.

And something else changed. When I caught those stares, I started to forget to glare back and instead smiled. If they continued to stared at me like they couldn’t process what we are, I would smile just like my son taught me to. My smile is not as open as his, not as warm or as full of life, but I do my best. Plus, now I say hi to everyone I pass and I hope that my smile and my hello communicate at least a sliver of, “Hi. We like the mall, maybe more than we should and we are pretty happy to be here today. We may not be exactly like you, but we are not so different either. We hope you have a good day, and we hope that this is a good day for us too. Oh, and hopefully I’ll find a cool sweater – on sale!”

Dan
Father of Cole in 7th grade

CIRCLES
February 11, 2015

One of Cole’s hips turns in enough that it effects his walking when he’s using his gait trainer. The displacement makes it seem like one leg is shorter, and it causes him to turn in circles when he walks. Without support, it’s hard for him to walk straight. As his body has grown, it’s gotten progressively more noticeable when he’s walking, partially because his step has become stronger. His physical therapist suggested we try a lift in his shoe to try to offset the hip.

Light bulb going off! Makes perfect sense, and a fairly simple solution.

So I found a pair of sneakers that are wide enough to fit his orthopedic braces, and sent the left one off to Chicago to have a special lift added to the shoe. I can’t wait to see if this works. Cole’s thrilled about the idea, and is excited to test it out. He wants nothing more than to be able to man the gait trainer without having an adult following him around as closely as they currently do (to make sure he doesn’t go in circles). It cramps his style…

I don’t know why it never occurred to me before. I have an aunt who has a lift added to one of every pair of shoes she owns because a young teen she broke her leg and grew at the same time, leaving one leg shorter. It’s not a wholly uncommon thing. Especially for people who are confined to wheelchairs and sitting and who have cerebral palsy. Hip displacement is commonplace. Cole’s already had a repair surgery and sadly will likely face a couple more as he grows and his hip becomes more turned, despite interventions.

I wish we could solve all of his orthopedic needs as easily as the shoe lift, but I’m happy to take what small victories come our way. I’m very optimistic about this and can’t wait until the revamped shoe arrives back home to its awaiting owner so he can walk the walk, wherever it takes him, more directly!

WHEN I WRITE THE BOOK
January 14, 2015

This year I’m determined to learn how to better promote my blog. I’d at least like to figure out how to link it to a Facebook page I created for it. I’ve come to realize that I enjoy sharing my writing more than I previously thought I did. I don’t necessarily feel like I’m full of great wisdom or extraordinary insights or humor but I love the outlet writing gives me and I’ve come to understand that writers write to be read. While I may not be a writer per se, not yet anyway, I will admit that sharing my words is satisfying.

Writing is simply a medium of expression. Like an art, it’s best when shared. I harbor a dream of completing a novel that I’m writing. Well, of completing one of the projects I’ve started over the years. I kept journals for many years and thoroughly enjoy the art of letter writing. I save them and I send them. An actual letter through the post is a treasure. I have letters from my dad, my grandmas, old boyfriends and friends. I save the beautiful cards my husband gives me, and a small scrap of paper where he wrote a sweet nothing to me before I traveled when we were dating. I have a box somewhere with notes passed between girlfriends and I during class in middle and high schools. Words to paper make me swell with joy.

Since my early twenties, I’ve had countless false starts at writing my debut novel. For a short time I toyed with the idea of a collection of short stories. They’re a medium that I greatly admire. The art of the short story is far more of a challenge than a full blown novel because to create a magical short story, it has to unfold so much more quickly but still have the impact of completion. I’ve started all sorts of different chapters of different stories, never to finish any of them. It’s only recently that the idea struck for a book idea that I might actually finish. That accomplishment would feel amazing, even if nothing were to come of it. Just the idea of completing a book…it’s enough.