TAKE A CHANCE ON ME
February 23, 2016

The high school process continues. The great news is that Cole got into our top choice for him. The bad news is that the hard work is still ahead of us. The school he got into is an independent charter high school. It’s small, fully inclusive, and open to the challenge of having a diverse student body. It’s a performing arts charter but Cole was accepted to their liberal arts program.

They’ve never had a kid like him, but the reality is very few schools have. Cole’s unique beyond just his obvious challenges. I’m not sure where kids like Cole go to school but this process has shown me that very few schools are open to the unknown. Spectrum diagnoses are now apparently commonplace enough that they do not rattle most mainstream schools, and there are endless private options available to these kids.

The task of managing a child with physical needs is apparently more daunting to school administrations, than say some of the significant behavioral issues that can accompany many spectrum diagnoses. Add in the non-verbal component and he becomes even more so. The reality of a kid like Cole, who is by all accounts friendly, interested, cooperative, and bright in class, is that once people know how to manage his physical needs and to work with his technological accouterments (i.e. his Tobii), he’s a pretty easy kid.

Yes, he needs modifications for some of his schoolwork, and even the occasional accommodation, usually extra time, but even that isn’t terribly taxing. The big problem as I see it is that there just aren’t enough kids like Cole in general, and more pointedly, who want to be fully included. There aren’t even enough to motivate an innovative school or non-profit to start a specialized school for kids like him, as we’ve seen happen in the last decade or so for kids on the spectrum.

Neil Young started a very tiny school, which I believe emerged initially from a camp program that focuses on assistive technology for kids with cerebral palsy. It’s for younger kids, and handful at that, who can afford the private tuition. I’d love to send Cole to the camp to better his Tobii skills, and to perhaps help motivate him use it in social settings, and not just at school.

For Cole, whose only education experience has been in fully inclusive settings, and his only social group is a diverse pool of kids, mostly typical, the best, least restrictive setting for him is a high school that can provide the same. He’s motivated by peers and teachers who are seeing him, Cole, not the wheelchair, not the Tobii, just Cole, the boy.

Getting a school to take the chance of having him as part of their community is proving to be harder than anyone led us to think it would be. If the school of our choice can be convinced to take the leap and to go for it, the rewards of having a kid like him in their student body would be far greater than the accommodations and modifications that would be required to do so.

He brings something unique to the party and it happens everywhere he goes. I know I’m his mom, but I’ve seen it happen everywhere he goes. He has the ability to attract people, to make peers feel comfortable, cared for and important, and to make a lasting imprint on teachers and staff. He has countless checkout people at our regular haunts, and waitress staff at favorite restaurants that count on smiles from him and return them just as openly.

If he can continue his education at this school, he’ll find his place quickly, routines will become established, and life will go on, just slightly altered, and most certainly improved, by him being there.

Please!!!!  Take a chance on Cole!

I AM THE DJ (Series – 12)
January 12, 2016

I’m still feeling blue about the death of David Bowie. It’s amazing how much influence he had on nearly everyone I know. His music was a constant of the playlist of my life. My dad had his late ‘60s folk album, David Bowie, and I loved There Is A Happy Land and Uncle Arthur. They still occasionally appear in current playlists. As my dad transitioned a bit out of Bowie, I fell deeper as I approached my teens and Bowie delved into glam and rock. There was no one like him. I remember watching him on SNL, and the show that followed SNL in Los Angeles, Don Kirshner’s Rock Concert whilst babysitting. I had the great fortune to see him live a few times and he never failed to thrill. He was innovative, unique, passionate, and fabulous. By all accounts, he was kind, generous and caring too. A man among men, and a brightly shining star in whatever universe he chose to illuminate.

The search for music Cole will enjoy during car rides and downtime continues. I’m getting better at honing into more likes than dislikes. Here’s the January list we’ll try this weekend:

Young Americans – David Bowie
If the Stars Were Mine – Melody Gardot
Song For Someone – U2
Give Me A Try – Wombats
Way Down We Go – Kaleo
Talk To Me – Kopecky
Rebel Light – Strangers
Gone – JR JR
My Type – Saint Motel
Get Off This – Cracker
Could Have Been Me – Struts
Ready to Start – Arcade Fire
Money Maker – Black Keys
Nobody Really Cares – Courtney Barnett
Rebel Rebel – David Bowie

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CRUEL TO BE KIND
January 11, 2016

I had a bit of a revelation this past weekend. Perhaps somewhat overdue revelation but I had it (finally) and it’s put me to shame.

A discussion about something Cole related with my husband turned, as it often does, into an argument. I took my frustration out on him and got nasty. It’s my M.O. – not one I’m proud of but it happens a lot when we get into these emotional conversations. I think a lot of people do the same, and it is a learned style of fight that got passed on to my by my mom and brother. Hurt the ones you love.

The revelation I came to, is that my frustration when discussing difficult things in my life, is that we’re discussing difficult things in both of our lives. Shared frustrations, concerns, fears, anxiety, and stresses. When I talked to friends about these things, I have an outside opinion to bounce things off and to bring in different views. When I discuss things with my husband, the frustration is that we’re both in a similar place and it doesn’t help to remove me from where I’m stuck.

I’m not sure if I’m expressing that properly but in my head it makes sense and it struck me that it’s the root of some of the anger I direct at him. He can help me resolve some things because he’s looking for the same resolution, and I can’t necessarily help him. Sometimes you need a trusted or knowledgeable outsider to provide perspective and insight.

While I know that my fighting style is cruel, and not appropriate, especially when aimed at my partner, someone I love, this recognition I had gave me cause to reflect on my misguided anger in a way that I haven’t before. It gave me a deeper awareness of my failing. When I’m hurt, worried, concerned, or even appropriately angry, it’s not useful or helpful to deflect it upon someone else, especially someone who is often sharing the same emotions and therefore doesn’t need the additional burden of my wrath.

We’re going to fight still, everyone does, but I’m really going to make a bigger effort to stop to better understand the whole of a situation and what might really help to resolve it before I lash out.

Maturing can be a real bitch sometimes, especially when the mirror reflection is of someone were not proud to see…

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.

INNOCENT
December 15, 2015

Cole didn’t go to school today. Apparently there was a credible bomb threat in our school district, which caused LAUSD to cancel school for 640,000 students at 7:15 this morning. Insanity.

My instinct is that it was some sort of prank. A New York school district received the same threat during school hours and opted to keep the kids in school. I’m not sure if they have faster sources of verification in place following 911, or why they made the decision but all seems to be well on that end.

Nothing happened here in Los Angeles either. It was likely a distraction of sorts. The logistics of keeping 640,000 kids home are enough to cause some relative chaos in a community. That in itself is problematic, though certainly not life threatening.

Coming on the heels of the San Bernadino tragedy, I don’t think LAUSD had any other option but to pay heed to the threats. They pointed out that they receive daily threats, which are not acted upon, so something must have been more concerning with the threat today.

I can’t fathom who would target schools and children. It breaks all of the ethical rules of war, of humanity. I know terrorism is meant to do so but even terrorists are human, and as we learned from San Bernadino, they sometimes have children.

That level of belief that leads one to take lives in the name of whatever the motivation confounds me. Perhaps I’m naïve, but that means of action does little to earn support or change. In simplest terms, it provokes good to rise over evil. People being shot at a Planned Parenthood doesn’t make us turn and think “Oh, yes, that’s the way to express a point. Now I see what you’re trying to say.” No, that just doesn’t happen.

Having to explain to your child that school is closed because someone made bomb threats at schools is not a conversation 640,000 of us wanted to have today. Our children lost a little of their innocence today.

CHRISTMAS PRESENT
December 14, 2015

Cole is the most difficult child to buy gifts for. He wants for nothing. Not because we give him everything he wants, but because he truly doesn’t enjoy a lot of things. In some ways he’s a very simple fellow. He loves his television, occasional movies and books, and music.

He does the occasional art or science project and will every so often partake in a game. He doesn’t care much for action characters or cartoon figures or toys. He’s happy to cook with my husband and I when the mood strikes him, but there’s not much he needs in terms of cookware or accessories.

He likes to dress simply, which means during the week to school dress code – mostly navy sweat pants or shorts and a white long or short sleeved athletic shirt, and non-navy sweats or shorts and t-shirts on the weekend.

He’s got all kinds of gadgets and gizmos meant to make his life more accessible or fun. They don’t all work but we try. Same goes for seating. We love the Chill Out Chair and so does he, but various beanbag chairs haven’t fared as well like the yogibo, a giant beanbag like thing that now resides upstanding in his room, hovering over everything and taking up space that doesn’t exist.

Sadly, there are way more misses than hits in our repertoire of gift selections for Cole. All given with well intentions and all given with hope and lots of consideration that they’ll be hits. Alas, we’re gearing up for another holiday and he’s always the last one to be checked off the “gifts” list.

Besides coming up with some great ideas for ourselves, we also have the additional pressure to make suggestions for everyone else. Gift cards to movie theatres and places like Amazon, Target and Barnes & Noble are always on the list. He enjoys taking his friends to a movie and it’s useful to have the gift cards in the event we stumble upon something that seems wonderful for him.

I’m looking towards high school with some of the ideas this year. He and his para-professional are going need to be on top things come high schools so I’m focusing on ideas that will help, like a portable scanner so they can scan his homework, classwork, and school notices into an app that we can all access with the hope that less things get lost or don’t make it home. It’s not a glamorous gift for a fourteen year old boy but it’s practical and needed.

For Cole, people are more important to him. He likes going to lunch with his grandma each week and he looks forward to seeing friends and family and enjoys being able to share some frozen yogurt or a movie with them. Genuinely…that’s the stuff that makes him happiest. I love that about him but I still wish I could find the one great thing that makes his eyes gleam and smile widen!

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.

 

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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MAGICAL MYSTERY TOUR
November 23, 2015

We’re trying to solve a mystery…

Some rather angry bruises appeared on Cole’s inner thigh last week. They look like a series of overlapping oval shaped bruises so whatever is causing them is something that occurs continuously throughout the day(s). The mystery is what.

All of the equipment he uses on a daily basis is equipment he’s been using for a while prior to the bruising, and even post surgically without bruising. None of the various strapping or harnesses or wedges really sync up with the location of the bruises and there’s nothing else he’s doing differently that could cause them. It’s frustrating and curious.

We’ve noticed that when he’s home and wearing the knee immobilizers (he has to wear them at night for a year while his body continues to heal from the surgery), he sometimes slips his fingers into the top of the knee immobilizer, which has led us to wonder if he’s causing the bruising himself. It seems unlikely but nothing else seems like it’s the cause either.

This is one of those times I wish he could just tell us what’s happening…Miss Marple I am not!