Archive for the ‘cerebral palsy’ Category

ANNIVERSARY SONG
April 22, 2015

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Today is my fifteenth wedding anniversary. We’ve been a couple for seventeen years. Almost a third of my life…Before Dan the longest relationship(s) I had been in lasted no more than two years, and ours is in many way the most challenged. The divorce statistics for couples with special needs children are pretty daunting. Something like 80% to the national average of 45%. I’d say we’re doing pretty damn fine!

The past fifteen years have not always been easy and there have admittedly been times when it felt like the best thing to do would be to throw in the towel but the love has always been there, even when we haven’t liked each other very much.

I’m a handful. I admit it. I can be very hard on someone who disappoints or angers me. I also have a tendency to lash out and be hurtful, especially with my husband who is the unfortunate recipient of my foulness no matter who or what the cause. He has the pleasure and sorrow of being the one closest to me, and the one who is around me the most.

The pay off is that I’m more often sunny and pleasant. He actually thinks I’m funny and tolerates my singing, which even my son refuses. We’ve had to endure a lot of stresses over the years, most notably the birth of our beautiful boy, our attempts to navigate the world of special needs parenting, and everyone’s favorite, finances. But we’ve managed to come together more often than not and work well together. Our strengths compliment one another making us a force to be reckoned with. Our journey has been unexpected and bumpy but always with an underlying current of love running through it.

We plan to celebrate rather simply because it’s a hectic time workwise for both of us and a Wednesday (not as fun to do late night celebrating on a weekday!), but, because it’s a rarity, the idea of sitting across a restaurant table from my husband, sharing wine and nibbles is heaven.

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Rather than one single grand gift, I decided to go with the 15 theme…Fifteen assorted prezzies! They range from a CD with 15 songs that remind me of him to a bag of what he claims is the best coffee he’s ever had (James Coffee Co.) to a Replacements t-shirt (we saw them the other night and he commented that he realized he didn’t have one of their T-shirts despite them being one of his faves) to 15 photos from our wedding that I created an album for to a chocolate croissant (his favorite) from a great bakery near my office to start the day on a sweet note. The process of coming up with the ideas and the different fifteens (like the songs, pictures and things I love about you list) really put me in a frame of mind of recognizing how blessed we are and of how much I love him.

Nothing crazy, but hopefully things that say “I listen, and I hear you”…Here’s to the next fifteen, Darling.  I can’t wait to see what is yet to unfold!

LET’S GET PHYSICAL
April 20, 2015

(An obvious song choice but how I could I not?)

Finding time to exercise is a chore. I’m not inherently disposed to love exercise, although I really do enjoy being physical and moving my body. I just have to find the right mix of good workout, interest and perhaps passion. A friend I know loves yoga and dance, and looks forward to her classes as they bring her joy. Physical movement and challenging your body and mind kind of joy which to me is a great thing and I wish I could find the class(es) or activities that could bring this to my life, and that I can actually fit into my daily life.

I know a lot of people struggle with this. In the realm of life, we all know we need to exercise and that it’s something that we should prioritize in our daily lives in order to maintain good health and sanity. I know this. I know this. I know this.

But I can’t manage to do it.

I took What’s Your Fitness Personality, an online quiz I found that resulted in me being a “seeker”. My results suggested that I pursue running, walking, weight training and martial arts. Apparently I’m goal driven and self-motivated. I have both of these traits in life, but not when it comes to setting fitness goals and self-motivating my ass out the door to workout.

I’m not a runner, though I do imagine myself running from time to time. It’s a workout that I know I could fit into my weekday because I can do it in my neighborhood, before or after work, and it doesn’t require equipment or cost. I actually want to like running but again struggle with starting it.

Given that I’m (allegedly) goal driven, I found a couple of online routines that promise to take you from zero to running 30 continuous minutes in eight weeks, and a six week training program that takes you from zero to running a 5K. Both seem reasonable and both interest me. Running for 30 minutes straight seems like an achievable goal, as does training for a 5k. Reaching one or both goals would be empowering.

But no one tells you how to push yourself out the door on that first day…HELP!

ME, MYSELF & I
April 16, 2015

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

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

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

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

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

VOICES CARRY
April 13, 2015

Navigating the world when you can’t speak is tricky. In order to share your needs or to participate in conversations or activities you need to rely on others paying a modicum of attention to you, which is not under your control at all. I see the frustration and sadness in Cole sometimes when people, sadly, including myself, don’t notice he’s trying to express something or vying to be a part of a group conversation.

When he was small, it felt natural for one of us to sit near him so that we could facilitate his inclusion a bit. Most younger children have their parents close even when they’re socializing with other kids. Now that he’s a teen, and going to parties and outings where his friends are dropped off and on their own for the most part, it’s a different scenario.

He doesn’t want to be the only kid with a parent around, and if there is a parent around, he definitely doesn’t want them in the thick of things helping him be part of the group.

But he’s not able do this successfully on his own and friends can’t be held responsible to include him or to make sure he’s an active part of the festivities.

I’ve written about this before but I’m grappling with it because I see him left out of conversations more and more and I see the effect it has on him. And it’s not anyone’s fault. It’s sadly just a reality of his circumstances and I struggle with how to make it better for him.

I don’t have any great solutions and the tough love part of me feels like he needs to accept some of the responsibility in it. He has a communication device that he uses at school, but that he most often refuses to take with him anywhere during the weekends. I understand some of his reasoning as it’s rather large and blocks him from view from people a table, and also blocks everyone else from his view. Not ideal, but it gives him a voice and a means of including himself in conversations, and initiating them too.

The nurturing part of me wants to hire a peer to support him and facilitate his participation. A peer, as opposed to the adult support we do often hire, at least is part of the action too. It doesn’t seem as obvious as having an adult with him. But it feels a little like paying someone to be his friend, and that feels terrible. He’s got great friends who adore him and do their best to include him.

It weighs on me because there’s not really a great solution. He’s got a big 7th grade night time party this weekend that he’s so excited to attend, which is why this is on my mind. I just want it to be everything he hopes it will be…I know I can’t be there to make sure it’s a good experience so it ruminates in my head…If I could change anything for him, it would be to give him his voice…the impact of him having the ability to speak would change everything for him. More so than walking, or eating, or having better motor skills. I’d give anything to hear his voice.

WHERE IS MY MIND (Series – 1)
April 10, 2015

I am a magazine junky. There, I’ve come clean. As much a I love to tuck into a great novel, and do read on a nightly basis, I love the immediacy and compact nature of magazines. I can pour through a stack of them at my leisure and pick up all kinds of information, some necessary and some trivial. They delight me.

Over the past several years, I’ve trimmed down my paper subscriptions, opting for online versions as well as some online magazines like Chalkboard, Huffington Post, Green Monster, Food 52 and The Skimm. They serve my curiosity and fit in well when I only have a short time to play. I also love the ease of Googling anything that strikes my fancy (you don’t want to see my history – it’s a plethora of weirdness) and to find lots of information about everything from recipes to adaptive seating to best red lipstick shades to accessible travel to the latest in Swedish design. Right now I’m a bit obsessed with researching stem cell treatment.

And don’t get me started on Pinterest! Before Pinterest, I would tear or cut out articles, pictures, recipes and more out of magazines and newspapers, sticking them into files that I rarely looked at! With Pinterest, I save everything and anything and I do actually use my Pinterest files. I can take haircut ideas to my stylist, search for cool light fixtures for my dining room, track ideas for our 2016 trip to Paris, pull up recipes I’m keen on, and more, more, more…without clutter!

So here are some things I’ve found intriguing recently…places my mind has gone wandering:

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  1. 16 Party Bar Ideas Because I love entertaining and doing a festive bar is a fun way to let your guests DIY
  2.  Fascinating – What Your Eye Color Says About You
  3.  This sounds like so much fun – Shooting Hoops
  4.  Sara Gottfried – I am so looking forward to reading her new book about managing hormonal influences with diet
  5.  Contemplating this a means of storing all of our photos and documents: Bevy
  6.  For the lo-tech people like me who could use a little help: 20 iPhone Hacks

I AM THE DJ (Series – 10)
April 9, 2015

I’m looking forward to a few days of “Mom & Cole” time. Dan’s doing a conference this week through Saturday and has benefit to attend Saturday evening so we won’t see him until Sunday. Cole’s is continuing with Spring Break camp this week, which he seems to enjoy. A couple of his pals are there this week who were not last week so they’ve helped to make the week a bit more fun. I try to leave work a little early when Dan’s away so I can be home at a reasonable hour to have dinner with Cole. We fall into an easy routine of dinner, bath, a little TV. We have The Voice recorded so we’ll most likely watch the lives together.

Saturday we have some important errands to run. He’s attending a birthday celebration for one of his favorite friends and has decided on a gift so Saturday is shopping day! I’m guessing we’ll rope Grandma into joining us for a little shopping and lunch. Cole loves his weekend outings with her (so do I). I’m working a playlist for our driving. It’s kind of an esoteric mix but there are definitely a few songs that I know he’s going to love, and few that may surprise me. I just keep trying to keep us listening to different kinds of songs, old and new…just not the familiar kiddy music…anything but that!

So here’s the start of the April Playlist…

  1. ELEPHANT STONE – Stone Roses
  2. NO MYTH – Michael Penn
  3. STRANGE CONDITION – Pete Yorn
  4. GET CLOSER – Life in Film
  5. MAN WITHOUT A DREAM – The City
  6. GIMME SOME LOVE – G. Love & Special Sauce
  7. PINK MOON – Nick Drake
  8. I WANT YOU TO WANT ME – Cheap Trick
  9. EX’S & OH’S – Elle King
  10. CASTINADES EN EL GRANERO – Hinds
  11. CRAZY FOR YOU – Scars on 45
  12. DARK SUNGLASSES – Chrissie Hynde
  13. COMMON PEOPLE – Pulp
  14. PEDESTRIAN AT BEST– Courtney Barnett
  15. PICTURE THIS – Kero Kero Bonito
  16. WORLD SHUT YOUR MOUTH – Julian Cope

SHE BLINDED ME WITH SCIENCE
April 8, 2015

A friend is in Panama City this week doing an annual pilgrimage to provide her young daughter with stem cell treatment to help her gain improvement in her strength, motor skills, tone, and more. Like Cole, her daughter has cerebral palsy. Stem cell treatments, while somewhat revolutionary are being used to help children and adults with cerebral palsy with good success. I’ve heard about it over the years but hadn’t really done any research because it seemed out of reach for whatever reasons.

It’s not a miracle treatment that will eradicate all of the damage and disability from my child but from the research I’ve been doing recently, the treatment can induce small, notable improvements in overall health, alleviation of seizures in some, better focus, stronger muscle tone and coordination. Some testimonies I read cited improved vocalization and vision as well. The stem cells help to rebuild the damaged neurons and to help the body to create new healthy pathways.

It’s impressive. And it’s expensive. Stem cell treatments are still somewhat experimental and not covered by health insurance. Most clinics doing them are based outside the US so there are also travel expenses to consider. Still, when faced with the possibility of a treatment that could improve Cole’s health and circumstances even slightly, it’s hard not want to figure out how to make it happen.

For now, I’ll continue to research and will most likely talk to some of his doctors about it. It’s hard to decipher the testimonials. Many are from parents with very young children and I know that, from our experience, Cole made huge strides on his own in the early years because he was doing so many therapies and his mind and body were naturally getting stronger as he developed and grew. However, reading some of the testimonials from older children, teens, and adults gives me cause to believe there is potential in the treatment for him.

The impact of any improvement to his health, strength, tone, and/or focus can have on a kid like Cole is huge. The smallest benefit can be impactful to his life, which makes me want to know more about it. It gives me hope. Not for myself but for the possibilities it could provide for him.

SUNNY AFTERNOON
April 7, 2015

Sometimes the simplest things can be so satisfying and pleasing.

This past Sunday, Cole and I had plans with my mom to do our usual weekend errands and lunch. It’s part of our weekend routine and gives us a chance to visit with my mom, something we both really enjoy, all three of us enjoy. When we called her to set up our pick up time, she mentioned she had talked to my brother and that he would be in the Valley and could join us for lunch. Fun.

When we picked her up we learned that her boyfriend would be meeting us for lunch too. Again, fun.

We made a stop at OSH and both picked up a few new veggies to plant in our gardens and then worked our way through Trader Joe’s doing my weekly shop. Mostly, I shop and she and Cole disappear, roaming the isles for their own goodies and causing mischief.

As we were packing up the car after our shop, my mom suggested we call Dan to invite him to lunch too. He accepted and we suddenly had a gaggle of family lunching with us. We just went to a local burger/dog joint that has a nice patio in the back where we three often spend long weekend lunches chatting well beyond our meal. In the same fashion, our extended group had a leisurely, sunny lunch and had a chance to catch up with one another and enjoy some family time.

A more rare treat than you would think, but coordinating schedules with three active teens between us is complicated, so we don’t all get together as often as we’d like. The afternoon was a nice reminder to be spontaneous. You never know where the day will take you.

LOST IN THE SUPERMARKET (Series – 7)
April 3, 2015

We are a multicultural family. My husband is Jewish, and I am, well, spiritual in my own way. My brother’s family is the same, his wife and daughters are Jewish, and he’s his own guide. Multiculturalism has become so common; nearly all of our friends are too.  A nice thing, besides exposing our kids to different practices, etc., is that families develop their own traditions.

One such family invited us to a potluck Passover dinner this evening. The event is being held at their new home, and while respectful of the traditions and holiday, the meal will not be entirely kosher or in keeping with the tradition. They assigned the dishes each guest would bring. We were assigned to bring chicken liver. I think traditionally it’s a chopped chicken liver dish with hard boiled egg and some other things mixed in but I’m honestly not a big fan of the most rustic versions of chicken liver pates so I made the Chicken Liver Pate from Animal’s recipe (Animal is a James Beard Award winning, top restaurant in LA that has an amazing chicken liver toast dish on their menu that I LOVE).

I had to overcome the ick factor of raw liver. I had never cooked it and am really only a fan of it in smooth, buttery rich pates. Snobbery, perhaps, but I managed to get the slimy livers into a buttery pan and cook them off without actually ever touching them!

Just let me say, it was all worth it. It was actually not as terribly as I imagined it would be and the pate came out beautifully. It tastes like Animal’s! I feel embolden! I can make pate! I scooped it into some jam jars, a couple for the party and smaller ones to share with a couple of office mates who are also fans of Animal’s dish.

Happy Passover, Good Friday, Easter…whatever you honor. It’s nearly the weekend, which pleases me!

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ANIMAL’s CHICKEN LIVER TOASTS (I tripled this recipe for a party of 30 people)

  1. 1 stick, plus 2 tablespoons unsalted, grass fed butter, softened
  2. 1 pound chicken livers, trimmed
  3. Salt
  4. Freshly ground black pepper
  5. 1 medium red onion, diced
  6. 4 thyme sprigs
  7. 20 ¼ inch think warm baguette toasts
  8. Extra virgin olive oil, for brushing
  9. 2 garlic cloves, peeled
  10. Shallot Jam (recipe included)

Brush the bread slices lightly with olive oil. Grill or toast the bread until crispy. Rub with garlic.

In a large skillet, melt 2 tablespoons of butter. Season the livers with salt & pepper. Cook over high heat until browned, about 2 minutes per side. Set aside on a plate.

Melt 2 tablespoons of butter in the skillet. Add the onion and thyme and cook over moderate heat until the onion is translucent and softened, about ten minutes. Add the livers and cook until heated through for about 2 more minutes. Transfer to a plate to cool slightly. Discard the thyme.

In a food processor, puree the liver mixture and remaining 6 tablespoons of butter until smooth. Strain through a fine mesh sieve and season well with salt. Transfer mixture to serving bowl, jars and cover with plastic wrap pressed onto surface. Refrigerate until chilled and firm.

Spread onto the toasts and top with Shallot Jam for garnish.

SHALLOT JAM

  1. 2 tablespoons canola oil
  2. 4 large shallots, thinly sliced
  3. ¾ cup balsamic vinegar
  4. 1/3 cup light brown sugar
  5. Pinch of salt

In a skillet, heat the oil. Add the shallots and cook over moderate heat until softened and translucent, about ten minutes. Add the vinegar and sugar and cook until thick and jam like, about five minutes. Season with salt to taste.

SUNDOWN
April 2, 2015

I turned on the car recently and Sundown was just starting to play on the radio. I had a moment of sadness but then realized it was a happy start to the day. Maybe my dad would be with me…Sundown is a song that reminds me of him more than any other. I’m not sure why exactly because I don’t think it was a special song to him. I just have memories of it on the radio, me sitting in back, leaning over the middle of the front seats (I was a child back when backseat belts were not used), the two of us poorly singing Sundown. I can still feel the utter happiness I felt in that moment. He’d glance at me as we sang, smiling with a twinkle of conspiracy he often shared with me.

So I turned up the radio, started off to work singing loudly and joyfully, hoping he could hear me and that he was singing along too.

He had a way of making you feel like you were about to have some sort of adventure with him. A simple trip to the grocery could become an afternoon lost wandering around comic book stores in search of a random issue he needed for his collection. A trip to a museum ended with him introducing me to my first martini(s). Gin or vodka? Dirty or dry? We wandered around downtown until we found perfection in our preferences, and an expensive cab ride home!

Dad & Me 1965

When he and my mom moved to Oregon, we’d spend hours talking on the phone, and sent lots of cards and letters. He was my best girlfriend. There was very little we left out of conversation. I’m blessed to have come to a place with him where we were so close.

Today is his birthday. He would have been seventy-two years old today. It’s funny because I can’t quite imagine the man he would be if he were still around. He died unexpectedly at fifty-six, going for a backhand shot in a tennis tournament. Not a bad way to go all in all but tragically way too soon. He probably had a smile on his face, which for some reason brings me peace.

My mom stayed in Oregon for another decade before she and her beau moved back to Los Angeles to be closer to the grandkids. I don’t know if my parents would have moved if my dad were still around. They were happy there. It’s a lovely place to live. There would be frequent visits to see the kids for certain, but whether they’d return for good, I can’t say for sure.

I’ve said before but it pains me that he couldn’t have known Cole. The two of them would be fast friends, compadres, and partners in crime. My dad would have taken it upon himself to devise all kinds of gadgets and gizmos to improve Cole’s life. He was like that. He would have been inspired to create and dream with and for Cole. No matter how much I miss him, the real tragedy is that they never met.

I miss him.

Dad 1980's

I’ll miss him every day of my life…