RUN THE WORLD

November 10, 2015 - Leave a Response

I have two nieces who I love to pieces. Sorry, couldn’t resist. I always think of that cartoon where the cat hates meeces to pieces…I want to say the Pixie and Dixie Show? Jinx the Cat? Anyway, I adore my two nieces…to pieces.

Emily is seventeen and senior in high school. She’s currently sending out her college applications, narrowed down to something like fifteen from forty! She’s looking at schools all over the country with an interest in computer science. Em plays on the varsity volleyball team at her high school and in league as well. She also played water polo for a season in high school.

She’s been part of a junior leadership program at Cedars Sinai for several years as well as volunteered as a candy striper. She also has been involved with some girls empowerment seminars at her school and was selected to be a part of the Girls That Code internship program this past summer, doing a seven week , 9-5, stint at the Honest Company. She’s impressive.

Emily

Emily

Her sister, Devon, is fourteen, almost fifteen. She is a freshman in high school, and plays on the varsity volleyball team as well. She is in fact one of the top players on the team. She’s one of the top players in her age group in the country. She plays both indoor and beach volleyball and is getting a lot of notice. She too plays in league, and for the US National High Performance beach volleyball team, in the 17 and under category…one of ten girls. She’s impressive.  It’s going to be interesting to see where her interests take her through high school.

Devon

Devon

Besides their shared love of volleyball, the girls are actually quite unique. Emily is more serious than Devon, and Devon is more artistically inclined. They’re both bright, kind and beautiful. I love having nieces because it gives me a chance to get my girlie on, especially when they were younger.

Even though we live in the same area, I don’t get to see to them nearly as often as I’d like. The circumstances of my life are a big factor – between work and taking care of Cole, it’s tough to find time that works with their busy schedules. With Emily perhaps attending a university on the other side of the country, it has me wanting to see them more. It will be so different with her, and then Devon, away on their own, finding their own place away from the family. Cole and I are already plotting out our care packages! Monthly letters, photos and treats!

Tonight I finally have a chance to see them both play together on the same team in the playoffs for their high school volleyball league. The stars aligned – the game is near my office, starts at 7 pm (later than usual), and I’ll be there, cheering for my darling nieces. Whoo Hoo!!!

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LOVE AND HAPPINESS

November 9, 2015 - Leave a Response

I attended a party this past Friday that is hosted by a couple of companies that I do work with.  I didn’t really know that many people in attendance, which is partially why I actually dragged myself to the event in the first place.  More often than not, I can be shy and I have hard time motivating to be bubbly and open.  Not always, and funnily, those who know me might find that a bit surprising.

In any case, I went and I spent a couple of hours enjoying the Santa Monica Pier after dark with nothing but lawyers and bankers, meeting people I’ve been talking to on the phone or communicating with vie email for years.  It was pleasant and really nice to have faces to the names now.  I had lots of enjoyable conversations and feel like it was definitely the right decision to attend.

I had one conversation with someone I consider a friend.  I’ve known him for many many years, though I only see him once or twice a year.  We are Facebook friends so we keep abreast of the shared events in our lives through that, which is really one of the things I most enjoy about Facebook.

One thing he shared with me is that he truly enjoys following my Facebook posts because he believes that they bring joy to people.  I hadn’t really consider that and don’t know that I’d describe myself or my posts as such but I was really touched that it was what he takes away from my shares.  It got me thinking about the interpretation and intention.

i suppose in many ways I do try to find the joy in things, even in dark situations like Cole’s surgery and recovery.  Somewhere in the love and care there are such moments of glee and joy that perhaps that is my intention in the way I share things.  It’s the way I try to live my life as well.  It’s not perfect, and it’s never going to be perfect but that doesn’t mean that there’s not infinite possibilities for happiness and joy – for hope.

I also tend to feel like even though we struggle, and have tough times, and life’s not always easy for us, or for Cole, there are so many people in this world, in my community, who have it worse.  Much as I enjoy a good bitch fest and the occasionally wailing and moaning about something, I never take it that seriously because I do always believe that it will all work out in the end.  I have hope.  I have joy.  I have love.

SWEET DREAMS

November 6, 2015 - Leave a Response

I feel somewhat validated! For years I’ve complained that the massively interrupted sleep I get is the root of a great many of my downfalls – moodiness, forgetfulness, weakened immune system. Cole routinely goes through bouts of insomnia, or spells when he randomly wakes up at the same odd hours in the night for a long enough period to fully wake me, and then goes back to sleep, while I lay there struggling to do the same.

Even today, we we’re up for hours when he decided 2:45am was a good time to wake! I grabbed an extra hour around 6am before I had to head out to work, but I’m greatly missing those few missed hours!

On top of dealing with Cole’s sleep issues, I hit the age or stage in life where I’m occasionally plagued with insomnia due to the hormonal changes. You ladies of a certain age range know what I’m talking about! It basically sucks to feel quite young at heart and mind, but to have your body remind you that it’s aging whether you like it or not!

Anyway, for various reasons, I don’t think I’ve had an extensive period of time where I experienced quality, uninterrupted sleep. And I’ve blamed it on any number of my behaviors. My husband has often just looked at me like I’m somewhat crazy but now Time Magazine has published a study showing that even just a single night of interrupted sleep can have negative effects on your body and mind.

Interrupted Sleep May Be As Harmful As No Sleep

Now, if only they could provide some natural and realistic interventions that would help all of us who have our precious sleep interrupted!

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BABY ELEPHANT STEPS

November 5, 2015 - Leave a Response

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…

REINVENTION

November 4, 2015 - Leave a Response

I seem to reinvent my career every so often. It’s not so much a conscious decision to do so but circumstances in my life seem to find me in different roles periodically.

I started my working life as hairdresser, which quickly evolved into my teaching beauty school because my family owned a small chain of cosmetology schools. Besides teaching, I learned a lot about running the schools and managing as well. I even helped to develop and launch an inter-school hair show, complete with product vendors, demonstrations from industry leaders, and a student styling contest aptly named Style ’88. When my family sold the schools, I too left the business. I started cutting hair when I was in high school and by the time I was in my late twenties, I became burnt out.

Unsure of what I wanted to do next, I accepted a job opportunity from a family friend who’s law firm was overseeing an entertainment company and sort of fell into my next chapter. I started as the receptionist at a small international film distribution company and quickly moved to another company, assisting the president of sales. I was then given the opportunity to handle sales in some of the smaller international territories, and my career in international film distribution took off. An actual career was born. I traveled to places like Cannes, London, Milan, and Budapest on an annual basis for film markets and festivals and enjoyed studying the film culture in the various countries where I handled sales. It was an interesting career for quite a long time.

When Cole was born I was running the international division of a distribution and production company. I had not intended to become a stay at home mom but the circumstances of his birth, and the reality of his life, kept me home. We spent the early years doing every and any early intervention available. Besides the barrage of therapies, we went to an inclusive co-op infant toddler program, moving then to the inclusive pre-school. We did acupuncture, massage, and aquatic therapy. We started hippo therapy (equestrian, not hippopotamus). I spent seven years home with him, learning to be his mom, his advocate, his therapist, his caregiver.

Eventually, however, he didn’t need me in the same way. He embraced every ounce of independence he could find. He started staying in the aftercare program at school, taking enrichment classes, playing with friends, and doing homework. He wanted to stay at school until they threw him out. So I started consulting here and there at first and eventually found myself in a full time job in the same international distribution arena but now doing contracts and financing instead of sales. I was able to have some flexibility in my schedule and no travel. Perfect for my family life.

Many years and two merges later I’m still fortunate to be working doing contacts, financing and more. I like to joke that I’m a lawyer by day (sans the law degree of course). Most people who do what I do are in fact lawyers but there are a handful of us in this business that are laymen with a decent grasp of the legalese. It’s challenging and familiar at the same time. I work with a group of people I really enjoy, and I have some flexibility. I’m in a good place. But that restless feeling that I wrote about a couple of days ago is seeping into all aspects of my brain. What’s next for me?

The whole high school search trauma (also from previous post) has me seriously contemplating climbing up on a soap box to challenge local, state, and federal education boards and governments to do better for kids with disabilities.  We’re doing them great disservice.

I’m inspired by Malala’s stance. Cole and I are reading her biography and it’s hard not to draw some similarities in her fight for education for girls and the need for people to advocate for children with disabilities to have been educational opportunities. Her battle had dangers and implications with higher consequences but the idea that everyone, every child, deserves the right tot quality education holds true no matter who, where or what the child.

If only activism could draw a salary…

I HATE MY SCHOOL

November 3, 2015 - 6 Responses

We’re in the process of looking at high school options for Cole. Sadly we soon will leave the inclusive nest of CHIME and throw him to the wolves known as LAUSD public high school.

It’s terrifying. The main realization I’ve come to is that children who are differently abled or different learners are not exactly welcome when it comes to high schools. The effort or cost to actually provide any sort of education to this population is not deemed worthwhile.

There are little opportunities to create a class schedule that would allow children who need support, physical or otherwise, in the classroom to learn in a typical high school classroom. In an overly crowded classroom with 45 desks, there’s not even physical room for a child in a wheelchair to maneuver or settle.

Our home school is not a viable option for Cole. Four different local gangs (so I probably don’t need to further explain why he’s never going to go there) rule the campus, so safety becomes a huge concern, and it’s not geared for kids with physical needs. I’ve toured a couple of schools so far and have several more to visit over the next month before we have to start making decisions and applying.

The one thing I’ve come to understand is that there will be very little opportunities for Cole to be included in, what I’ve come to fondly call “gen pop”. He’ll be relegated to special day classes where the classes are slightly smaller, the curriculum is modified to differently abled learners and where he can have someone with him to support both his physical needs and to help him access his classwork.

Part of me understands why high school has to be like this. They’re under-funded; overcrowded, and under-trained when it comes to inclusion. I also have no illusions about my son’s ability to keep up at class level without considerable support and modifications to his work. I do get the simple argument but to me it’s more complicated, and it’s more of a civil rights issue.

No child left behind means that no child should go without an adequate education. It doesn’t seem like our public high schools are even taking the first step towards providing a decent education for children with special needs. There’s a population of over twenty percent of our children who are left without real opportunity to have a true high school education and experience. It’s heartbreaking and it’s wrong.

Besides the placement of being in special day classes, there is little opportunity for any social interaction with gen pop. One school offered the possibility of him taking an elective each semester that would allow him to be in a gen pop classroom. Cole’s a very social being. He thrives on the interaction and friendship from typical children. He’s always made friends with typical kids and has never been a setting where he’s only among children with special needs. His criteria for friendship are all about shared interests and experiences. Even educationally, his typical peers motivate him. He wants to show them he can do things, what he’s learned, what he’s capable of. I fear that relegating him to special day classes will leave him lonely and unmotivated, and eventually depressed.

It sounds dire. It feels dire. I loathe this experience. I know that wherever he ends up, we will be right there in the trenches advocating for everything possible that can make his experience more inclusive and more tailored to his capabilities rather than disabilities. I know it will take a lot of work and diligence. I’m prepared to be the loudest squeaking wheel in the school if that’s what it takes to ensure he has a positive high school experience.

I just wish that there were more interest and support in educating all children from the schools. There are too many children who are being left behind.

PHENOMENAL CAT

November 2, 2015 - Leave a Response

Prior to Cole having his surgery I read a funny article about the healing power of a cat’s purr (Healing Power of Cat’s Purr). I shared it with my husband because we have a cat, Charlie, and I thought it was kind of interesting. He scoffed at the idea, as he’s apt to do when I share something off the beaten path, and particularly when it comes to health or medical related subjects.

Charlie is about twelve years old. We adopted him when Cole was two, along with his brother (Nick) and sister (Nora), both of whom are no longer with us. Charlie’s a fairly independent cat. He’s always liked Cole and as he’s aged he often tries to sleep on Cole’s back or bottom (Cole prefers to sleep on his stomach), but otherwise, we don’t typically see much of him during the day. Charlie spends his days sunning outside, visiting a few neighborhood dogs and cats, and doing whatever cats do. He relishes his independence.

However, Charlie’s routine took curious turn when Cole came home from the hospital following his surgery. Charlie became a caregiver. He took to vigilantly curling up between the casts during the day and night or draping himself over one of Cole’s legs with his head resting on Cole’s hip, purring. Purring a lot. Purring healing purrs.

He spent every day of Cole’s healing nestled on or near Cole. We took to calling him Nurse Charlie because he was so consistent. When Cole was moved to another room, Charlie would curl up in the spot left by Cole until he returned and then would reposition himself to be close to his charge. It was really fascinating. He took his nursing duties very seriously.

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Even now that Cole’s returned to his usual routine and is out of the house during weekdays, Charlie still hovers nearby and curls up with him for bedtime. It’s rare that if Cole’s resting on the bed, Charlie’s not nestled right next to him. It seems he’s not quite ready to stop caring for his precious patient.

Funnily, my husband and I both took to posting #NurseCharlie photos on our instagram accounts and when he was recently away on business he had lots of inquiry about Nurse Charlie. It would appear that our cat has captured some hearts. Perhaps he needs his own instagram account!

RESTLESS

November 1, 2015 - One Response

I’ve managed to neglect writing again. It’s supposed to be my (self-imposed) therapy but I seem to stop writing when I’m most in need of help! There’s irony in that somewhere but I’m not feeling it at the moment.

Cole returned to school after the summer but had a few mishaps that kept him home for periods of time. First he was sun burned to the point of sun poisoning, blisters on his face and legs and crispy skin all over. Then he developed a pressure sore (first time for this ever) likely from the changes to his body post surgery and from sitting more than he used to. Home for three long weeks where he could not use his wheelchair at all, meaning no outings. Back to school and then home for another week due to catching a nasty bug.

My husband travelled through much of this time so a lot of the responsibility and care fell to me. Juggling everything has left me feeling spent. Naturally, I’m sick now too. I’m looking forward to a bit of normalcy in my life, in our lives. We all need it. My husband travelled quite a lot recently and needs time home. Cole needs time back in his routine so he can regain his confidence, strength and joy. I need to figure out a fall routine for myself. I’m feeling restless.

I feel like I need to be doing things. I’m craving movement. I’m imagining projects I wish to endeavor. I’m wanting to surround myself with friends, old and new. I’m feeling restless. Perhaps I’ve been cooped up in my house too much these past months. I’m finding myself wanting to revamp it a bit so it feels different. I’m also looking forward to making things feel cozier with cooler nights coming soon. Yet I also feel the need to be away from the house!  I’m all over the place.

I have visions of evenings spent with a fire in the fireplace, candles lit, wine, friends, lots of laughter. I want to feed my friends with luscious meals, heady wine, cool music, and the simple pleasure of spending relaxing, quality time together. That’s my holiday season jam this year. I’m determined to make it happen.

Closing with a little Halloween fun.  We don’t all usually dress up but at the last minute my husband and I joined Cole has ghouls.  He’s a zombie chef, I’m a prombie (a broken hearted jilted prom goers) and my husband is just ghoulish – although a lot of people thought he was Zombie Costello (as in Elvis)…

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SEE THE LIGHT

September 11, 2015 - Leave a Response

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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HEAT WAVE

September 10, 2015 - Leave a Response

Fair warning…this is my little bitch fest today…I’m sick of hot weather!

And I’m watching one of my colleagues unload the contents of his refrigerator into our office fridge because he’s without power in his apartment due to the current heat wave. It’s topping 106 in Woodland Hills where Cole goes to school, and close to 100 in the city for the third day in a row.

It’s the kind of heat that has weight and tremendous volume. It hits when you step outside and encloses your being, stifling any desire to move further into its awaiting embrace.

Of course the heat, even extreme heat like this, is not usual to Southern California. I can think of two different years when we had to move to a hotel for a couple of night when our power went out due to widespread overuse.

Despite being a native of Los Angeles, of the San Fernando Valley in fact (I am an original Valley Girl circa 1982 song fame), I find the heat intolerable. I’m not a fan. It makes me cranky, sweaty (and I deal with hormonal sweat even in freezing weather so heat induced sweat just sucks), and lethargic. It’s hard to motivate to do much of anything when it’s so hot.

Cars are hot, bedding is hot, and my office is freezing! Dressing is odd because I need a sweater at work but if I step outside I melt. Being good community partners, we set our house thermostat so that it stays off during the day when no one is home but it takes hours to cool down once bodies are in the house so it’s never really completely comfortable these day.

I don’t like sleeping when it’s nearly 80 degrees in my room. Poor Cole is wrapped up in bracing that’s made of plastic and other synthetics that don’t breathe so he’s reduced to a puddle of boy come morning, though he’s more tolerant of the heat than I am. At least I think he is…Perhaps I’m just more vocal?

Thankfully, it’s supposed to start cooling down after the weekend…for a few days anyway. I have memories of actually hosting Thanksgiving dinners outside in the backyard because it was still nice and warm…sigh.