SWEET DREAMS
November 6, 2015

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

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

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

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

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!

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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HEAT WAVE
September 10, 2015

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.

PAIN & SUFFERING
September 8, 2015

This past weekend seemed longer than the long weekend actually was, if that makes sense. I continue to be frustrated in my inability to discern the nuances of Cole’s pain and anxiety. I find it odd that nearly three months out from the surgery he’s still in so much pain and discomfort. It doesn’t seem to be improving at all. My husband suggested we take him to see his surgeon a few weeks ago and at the time I thought it unnecessary, and he didn’t push it. Now I kind of regret it. We have a long set follow up appointment with her next week so at this point it makes the most sense to wait for that but the fact that he still seems so fragile physically, and mentally (which is a totally different beast) concerns me.

He came home Friday and cried for well over an hour. Not a whimpering cry, but a wailing, heart wrenching cry. Nothing I did helped or consoled him. He just cried himself out.

My husband was still away and friends had kindly brought a birthday party to me as it was my actual birthday. Cole was excited to hangout with his friends (their children) and to watch Pitch Perfect 2 with the gang. While the moms sat in the backyard enjoying champers and cheese, the gaggle of kids watched the movie, shuffled around the living room, talking and laughing, and Cole slept more soundly than when he’s tucked in bed. He slept through the movie, the singing of happy birthday, eating of cupcakes, and gentle hugs and kisses to his sleeping self as everyone piled out. He slept through me moving him, pajamaing him, and slept pretty soundly till morning.

Saturday we were supposed to hang out with my mom and Cole and she had plans to take me out for birthday sukiyaki (a word that Cole finds hilarious!).   However, when I suggested we start getting ready to go pick her up, he outright panicked, and continued to do so for the rest of the day. He couldn’t seem to stop himself from hyperventilating and worrying about every movement, touch or suggestion of change. He finally admitted to me that right now he needs his Saturdays so be plan free and that he only wants to hang out in my room, resting on the bed, watching TV or movies. No suggestions of going out, no trying to move him to different rooms. I don’t understand, and I don’t really like it but if he feels like it will help him regroup after the week or whatever, I’ll respect it. For now…

Sunday I managed to get him out of my room because my brother and sister-in-law surprised us with coffee & bagels, so I just moved Cole. He wasn’t pleased but he settled down fairly quickly and enjoyed hanging with them. His dad got home while they were there too which helped boost his day even more. The three of us actually got out of the house for a bit and he enjoyed some bath time.

Monday though was more of the same refusal to leave the bedroom. He just struggled to hold it together all day. It’s really starting to freak me out, and to worry me. I’m so unsure of what’s physically paining him and what’s mentally debilitating him. Both seem daunting on their own but pair the two, and throw in normal teenage hormones and stresses and then try to figure out what’s what and how to help. I honestly can’t. As a mother, it’s the worst feeling in the world to know that you simply have no answers, solutions, or comfort for your child.

We’ll see what the week brings. Lately he’s done so well during school hours, and at homework club, and then falls apart when he returns home. I tried finding solutions to that last week with some success, but I’m not confident that this week will be the same, though I’m not sure it could be any worse. Mustering a little optimism, maybe it will be better for him…

HERE FOR YOU
September 3, 2015

I’ve been solo parenting for a week now with a few more days to go while my husband is in Santiago on business. After the strange summer we had, all being on top of one another for a full two months, and the quick fire return to our work/school routine, I found myself kind of looking forward to having a little Cole/mom time.

Historically, when my husband travels, which is fairly consistent throughout the year, Cole and I have a pretty easy time. I’m not keen on the driving aspect of it (I’m driving him to school and myself to work – a minimum of 2 hours in the car each morning and then the same at the end of the day!) but love being the one to bring him home from school, go through his day and backpack, run through school and homework with him, and finally have some hangout time together. I usually miss this part of his routine because I get home from work two hours after my husband gets Cole home from school.

The past days have been much harder than I anticipated. The fact that Cole is still so utterly emotionally fragile following the surgery and summer makes everything harder. He’s less inclined to even attempt communicating and collapses upon arrival home.

Friday, the first day of our solo time, he cried for nearly an hour and I was never successful at finding out what was wrong. Even during the weekend, he was clingy and anxious, but I did eventually learn, after many conversations, that one of the reasons he has a hard time when he gets home from his school day (8am-5pm), is that he during the day at school, with his friends and teachers, he makes every effort to not let anyone see that he’s in pain or uncomfortable. He puts on a smile and works his way through the school day seemingly fine. So when he gets home, all of that held back anxiety, pain, and energy just spills out, uncontrollably.

Monday I learned another reason. Prior to the surgery, he spent a good part of his day on his feet in a gait trainer, either walking or just standing, bearing weight. Now he’s spending the entire day in his wheelchair and his body is stiff and sore when he gets home and is moved to his chill out chair or to a bed to sit on. Because he seems to find relief or comfort from wearing the knee immobilizers at night, I suggested we try putting them on right when he gets home to see if that helped with the transition. Voila! Mom’s a genius.

We’ve now had two nearly tear free, whine free post school evenings and I’m looking forward to a third tonight. Even more so, I’m looking forward to taking him to physical therapy this afternoon. He’s been doing it for a few weeks now as prescribed by his surgeon and I haven’t been able to attend. I took him to the eye doctor Tuesday afternoon, which also felt like a treat.

We have a winner!  The new glasses...

We have a winner! The new glasses…

Doctors appointments and therapies used to be my arena before I started working full time, and before my husband started working five minutes from Cole’s school. I miss the connection with Cole and his doctors and therapists.

I’m glad to have the chance to support him this week.  Even when it’s hard, I treasure my one on one time with Cole. It gives us a chance to reconnect and share the simple and not so simple every day moments that when woven together bond us.

PUT ON A HAPPY FACE
September 2, 2015

My husband is traveling for the first time since Cole had his surgery. I usually look forward to his travels because I enjoy having the time alone with Cole. We both do. It’s sort of nice to just have to focus on Cole’s needs, and mine, and Cole’s usually pretty happy to have the extra time with me so he’s super easy going.

Not so this time! He’s struggling. Since starting school a couple of weeks ago, his post-school routine is to get home and melt down. The melt down translates to tears, whining, whimpering, and stress. General upset. He can’t control it and he can’t calm down. I had this thought that he’d be super happy to have me at home early with him and to himself (he usually is) and that I’d get a different afternoon but that’s not the case this time.

Despite every effort I’ve not been successful in changing this new routine of his, although last night I did manage to gain some understanding of it. He doesn’t exhibit this behavior at school or in homework club. He holds himself together, despite being uncomfortable, sometimes in pain, tired, and nervous at school. He works really hard not to let that show at school. So he dissolves into a puddle of release when he gets home.

The only thing that seems to help is to let him soak in the bath, watching cooking videos, for a very long time…we’re talking two hours…cooled water…just leaving him be in the tub (actually on top of the water, on a bath chair that is too small for him)…and no bubbles!

It breaks my heart that there’s not much I can do for him and that he feels like he needs to present himself as being so fine in front of his peers and teachers. I don’t think anyone would judge him for having a hard time after the summer he’s had and whilst his body is still very much healing. I don’t know where his determination comes from, or why he feels he needs to put on a happy face? What is it inside him that has made him recognize that this form of survival?

It fascinates me that he can make the determination of when and where and around whom to smile for. He’s not opposed to misery while out and about in random public places, but when it’s peers, he’s loath to be anything but okay. It’s a rarity for him to cry, or fuss in front his friends, unless he’s really confident that they’ll understand or not judge him. We do have some family friends who do occasionally get a glimpse of his not so happy face, but they’re friends who have become more like family.

He’s a strange and fascinating boy. I so wish I had more access to the inner workings of that beautiful brain of his!