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.

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SMILE
November 30, 2015

I’ve heard Tears of a Clown several times this past week, which is kind of random and unusual. The song always reminds me of a dear friend, who once asked me to promise that it was played at his funeral. A strange request, especially since it was made when we were in our late teens, if my memory serves me correctly (which it doesn’t always). At the time both the Smokey Robinson and The Beat versions were in play.

It used to strike me as an odd choice, especially for my friend. He and I met under funny circumstances in high school. He was a grade below me, and we had a mutual friend who had decided we looked alike so she started calling us by each other names. At some point it only made sense that we met. We became fast friends, he one of my best.

Thirty some odd years later, he is still a dear friend. I don’t see him nearly as often as I’d like but every time I hear that song, he leaps into my thoughts, and the more I contemplate the song choice, the more I’ve come to understand that even back when we were kids, there were parts of him I didn’t know.

To me, a somewhat insecure, but likeable girl, he was the full package -bright, handsome, very funny and popular.   We shared a lot of interests and sensibilities, which is why we got along famously. We still can pick up from the last point whenever we do manage to get together and fall back into a comfortable ease. I treasure him.

But I’ve also come to recognize that the smile sometimes does hide tears. Maybe not quite that dramatically but that there is a underlying current of sadness to him that I couldn’t distinguish when we were young, but that feels somewhat familiar to me now. Life has seasoned my compassion and when I look deeper into his smile, I see so much more.

I understand why the song resonated with him, and perhaps what he was trying to tell me even back then when we were young.

I now sometimes feel like it’s an appropriate song for my life as it unfolded. I don’t have just one song, I’ll probably create a playlist when it’s time because that’s what I do…but this song will likely be on it because I’ve come to understand that sometimes people just need to believe that your smile is a smile, and not a façade for what’s really going on inside, and sometimes you just need people to think it’s a smile too.

 

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THANK YOU
November 27, 2015

I meant to post this on Wednesday and time got away from me…I hope everyone had a lovely holiday!

With Thanksgiving just days away, it’s only natural that one starts to contemplate the things they’re thankful for so that when the question is inevitably posed to the feasting table of friends, family and others, you have the seemingly perfect spontaneous response.

That’s not meant to be cynical at all. I just suspect that I’m not the only one who does better at public, yes, even a table of eighteen is considered public in my book, speaking when somewhat prepared. Besides, it’s good practice to be thankful and appreciative. Many wellness proponents recommend daily gratitude exercises as a means of learning to be positive, thoughtful and kind.

I’m thankful for quite a lot.

The middle of this year was stressful and trying and while it’s continued to be more difficult than anticipated in terms of the healing process for Cole, both physically and emotionally, the light is starting to peek through a bit and I feel positive about the year to come. So, I ‘m thankful for Cole truly starting to heal and to quite literally finding his footing again.

I’m thankful that my mom is near, and that she and Cole have such a loving, sweet relationship. I so look forward to seeing her each weekend, mostly because I love how much Cole adores her and enjoys getting lost and lunching with her.

Her boyfriend (yes, my mom has a boyfriend, which sounds funny for seventy somethings!) also has my gratitude. He’s never treated Cole as anything but one of the guys. Cole loves their covert conversations about girls and getting into trouble and delights in his stories. Cole’s desperate to have him teach him to play poker!

I’m beyond appreciative of all of the people who reached out with cards, letters, and treats for Cole when he was recovering. The support was amazing and the practice of reading each card, and learning about the author, and writing back was a great diversion from both recovery and TV! The love was overwhelming.

Along those lines, on a daily basis, I appreciate and would be lost without my growing and deepening network of friends who inspire, teach, support, and love me every single day. Without you I don’t think I’d have my sanity. I take example from each of you on how to be a parent, advocate, friend, and partner. You’re there when I need to laugh, cry, bitch, share a glass a wine (or two).

Finally, I’m thankful for my family. I am blessed to have a husband who is one hundred percent dedicated to our family and who does his best to see that Cole’s life is as rich and full as possible, and to have a son who makes every day brighter. Being Cole’s mom has taught me more about grace, determination, compassion, and love than I thought a single person could. I’m blessed for every day I get to be his mom.

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I AM THE DJ (Series – 11)
November 20, 2015

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The whole high school search has me in knots these past couple of weeks so I really want to try to go into the weekend and Thanksgiving holiday week feeling a little lighter in spirit. Music does it for me. It always helps my mood and truly has the ability to lift my heart and to get my body revved. Cole shares this synchronicity with music. He loves it and it can make or break a drive. He’s very ready for holiday music, which if you recall, I desperately try to enforce the “not until after Thanksgiving policy” upon him We’ve had a couple of outings already where nothing would satisfy but holiday music, and I’m thankful that the Bad Religion holiday album exists because to him it’s holiday music, and to me, well, it’s Bad Religion…(who by the way I grew up with…same junior and senior high school..).

I haven’t posted a playlist in a while but I’ve got one ready to play for the boy tomorrow when we are out and about doing some pre-Thanksgiving shopping and prep:

  1. CAGE THE ELEPHANT – Mess Around
  2. TONES ON TAIL – Go!
  3. ALEJANDRO ESCOVEDO – I Wanna Be Your Dog (Cover)
  4. BELLE & SEBASTIAN – I Want the World
  5. MARCHING CHURCH – Hungry for Love
  6. ALESSIA CARA – Here
  7. The FRAY – Heartbeat
  8. BRICK & MORTAR – Train
  9. ECHOSMITH – Cool Kids
  10. KING CURTIS – Soul Serenade
  11. KAYA STEWART – In Love With A Boy
  12. ADELE – Lovesong
  13. JEAN-MICHEL BERNARD – Generique Stephane
  14. DEVO – The Girl U Want
  15. THE PRETENDERS – Kid

 

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SAY IT ISN’T SO
November 19, 2015

I toured a local high school this morning and then spent the hour drive to work trying my best not to cry.

We’ve spent most of Cole’s life fighting in one way or another for something or other. Very little comes easy in the lives of children with special needs, especially when you want your child to experience as typical a childhood as possible. We’ve never wanted Cole’s disabilities to prevent him from experiencing anything that interests him. He may have unique ways to approaching things, but we’ve been fairly successful in providing him with a fairly happy, rich, normal (ish) life.

It feels like it all comes to an end with high school. The tours tend to highlight all of the amazing academic and elective programs that each school offers and the opportunities for preparing for college and glowing futures. Fabulous programs are available to good to great students, but only those who do not have disabilities and may require support to access the curriculum. Students like Cole are relegated to special day classes where their opportunities are vastly limited.

Never mind that he’s managed to get through nine years of school with the same kids who will be advancing into high school programs where they have a world of exciting classes to choose from and clubs, electives and sports. If he were to attend the school that I toured today, he’d be left with access only to special day classes that are on the first level because the school is not wheelchair accessible (no functioning elevators in 2015!).

Physical space seems to a prevalent problem with most high schools. The desk spacing is so tight that there is barely room for a student to slide down a row to their seat, and definitely no chance for a wheelchair to fit beyond the doorway. How is that legal? There’s an obvious disinterest in any form of inclusion at most high schools.

My kid may not have the ability to complete high school in four years, however, that doesn’t mean that he doesn’t have the ability to eventually complete it, and move on to college. I can’t say for certain what his future holds, but I can say that without the opportunity to have access to a decent education it won’t be as bright as it could be, as it should be.

But it doesn’t seem like anyone is even trying. So now, tears…I held back as long as I could.

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BALL OF CONFUSION
November 18, 2015

This morning Cole had a strange reaction to our discussing two upcoming parties we’ve been invited that somewhat conflict, more like overlap, and as he grew more and more upset, I was both struck by how ridiculous his reaction was and by how poorly my every attempt to calm him down. There’s nothing worse than starting the day off with tears and confusion.

It’s one of those times when I’m reminded of how hard it must be for him not to be able to express himself adequately, and how hard it is for my husband and I to always guess correctly. There’s so much assuming when dealing with Cole and his communication. In the instance this morning, I think he must have misheard, or jumped to a conclusion in what he heard, which upset him, and from that point he was fully committed to his reaction.

Honestly, I cannot imagine not having the ability to talk. I talk to myself. I talk to Cole incessantly – a habit I developed when he was young. I talk. As a kid, my parents joked that if we went on a long road trip, they could literally just sit back and I’d talk continuously throughout the whole journey, however long it may have been, often without noticing that no one else was joining in. My brother would immediately fall asleep, and I rambled.

It pains me to know that more often than I’d like to think, we’re missing the real point of what Cole is feeling, wanting, or trying to communicate. It also saddens me that he cannot always communicate a question to clarify something, or that we cannot adequately suppose that there is a misunderstanding or confusion. Even with the support of his communication device, it can be difficult for him to clarify his understanding or needs.

And of course, I constantly wonder what’s going on that beautiful brain of his. His inability to verbalize or vocalize his thoughts has no bearing on the thoughts running through his head. If I could have a super power, it would be to read minds, more specifically, to read his mind.

 

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FRUSTRATION
November 17, 2015

The high school search continues. (Screaming loudly in my head)

I have a tour this week, one right after Thanksgiving, and another two just before the winter holiday break.

In a crazy attempt to find a good school, I thought today, at the suggestion of a colleague, to try in my work district. We live in LAUSD (Los Angeles Unified School District) and I work in Beverly Hills, which has its own, fairly well funded, highly coveted school district, BHSD. I called to see if I could permit in since I work in the area and could be his primary transportation. A no go. They stopped accepting permits from outsiders, other than from actual City employees.

It was worth a shot.

The truth is, it probably wouldn’t have been better for Cole academically speaking anyway, but it would be in a safe neighborhood on a clean, accessible campus. Sadly we’re kind of down to those being highlights.

I’m touring our home school in a couple of week, if only to rule it out. After speaking to their special education counselor, I learned that the campus is accessible (“Yes, it has stairs”) and that it’s safe (“We have several police officers patrolling the campus, but we can’t control what goes on outside the gates”) so I’m feeling really confident about it. (Typed dripping with sarcasm, in case it didn’t translate in the writing). I’m having a really hard time mustering any enthusiasm for that tour!

I continue to be perplexed by how hard it is to find a decent placement for children with special needs, who want to attend typical school programs, but need some support either for their physical needs, or accessibility to the school work. Cole has only known inclusion. He’s been included since he was a year old. 80% of his friends are typical kids. He doesn’t understand that the world outside our little bubble isn’t as welcoming or accepting of people who are different. It’s starting to feel like a cruel joke. It feels a little like being thrown to the wolves.

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I don’t know what trumps a wolf, but I’m preparing for battle, and victory.

 

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THAT OLD FEELING
November 16, 2015

No matter what your circumstances, marriage is hard. Whenever you have two different people approaching anything together there’s bound to be some give and take, and when it’s creating a life together, and raising a child together, the potential for discontent becomes greater.

Throw in a child with special needs, who impacts your lives in many ways a typical child does not, the discontent grows. You can’t blame your child for the impact he has on your life. For the most part, his presence in your life is glorious, as with any child. But his needs will always take precedent and his influence is felt in nearly every decision.

Cole’s now fourteen, an age when many teens are starting to spend a couple of hours or more in the house alone whilst the parent(s) are out running errands, grabbing a bite of lunch with friends, working out, going to a movie, whatever. It’s an age where a lot of teens are also going out on their own, to the mall, parties, the movies, etc. Unfortunately, that’s not us, and it’s not Cole.

I’m certain Cole would love the opportunity to have the freedom to hang out with friends, doing something fun with out parents or adults. But he needs someone to support him, even if it’s just pushing his wheelchair, and making sure he’s included in the activity. The opportunity has never come up, not yet, but it’s also not something we can impose on his friends.

We don’t have great childcare at the moment and moving him is so much harder on him since the surgery, which leaves us with little opportunity for date nights and the like. Not having alone time puts a lot of stress on a marriage. You’d think not spending time together would prevent it but I find the disconnect makes things so much harder. It often feels like two people moving through a life side by side, but not together.

I’ve given it a lot of thought because my husband was traveling quite a bit these past months and given to my own devices, I create my own routines and it’s then hard for him to break back in to the fold. We bickered and bitched for the first weeks that he was home, and just this weekend things started to feel reconnected. We didn’t pick on one another, we accomplished things, and we relaxed a bit. I’m hopeful that we can continue on this path for the next few months where he’s homebound and not traveling. It’s nice to see glimpses of “us” again.

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RUN THE WORLD
November 10, 2015

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!!!

Cole&TheGirls

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