Archive for the ‘Life’ Category

BEAUTIFUL BOY
March 23, 2015

It’s National C.P. Month…Which of course has me thinking about the effect it’s had on my son’s life, and mine. I know the inclination is to feel badly for us however you’d be surprised that overall much of it’s influence in our lives has been positive. Much as I wish Cole’s life could be different for him, I can’t go into that “what if” place because ultimately, I can’t say that he’d be the beautiful, amazing boy that he is if things were different. It’s a slippery slope…

I saw a post on The Mighty where they asked people to write a letter to the diagnosis of their child, themselves, etc. I tried, but it ended up feeling like I was defining Cole by the diagnosis and he’s anything but that. In the end, the letter is to him:

It’s been almost thirteen and half years since we first met. You arrived in my life unexpectedly and immediately won my heart and shook me to the core. From the moment the doctors stopped using hours and days as markers of your future, we started to do our best to parent. We changed diapers, quickly learning to maneuver around the tubes and wires that were attached to you.

We held you as often as we could, talking to you and singing whatever songs we could recall – Lots of Beatles and Elvis Costello. You probably thought your name was Allison for a while there! Bringing you home, after five weeks in the NICU, was a huge milestone and meant lots more adjustments and routines. We learned to be adaptive and creative and most importantly we learned to accept help from others.

Doctors gave grim prognosis of what your life might look like, but you had other ideas and we were none too happy to support your every want, need and whim. You’ve thrived over the span of your short life. You’ve exceeded every expectation doctors had for you, and you have warmed the hearts of everyone who crosses your path, is touched by your smile, or delighted by your laugh.

You’ve never accepted that you had limitations. You find the way that works for you and you go for it. You lead a life not unlike what is considered typical. You’re a good student, a great friend, and an avid athlete. Though you have challenges other kids don’t face, and you’ve had to endure therapies, surgeries, and recoveries most kids don’t have to deal with, but you do it with grace and usually with the knowledge that whatever it is you’re having to do is ultimately only meant to better your life, strengthen your body, or enhance your day.

You inspire me on a daily basis and your influence has made me a kinder, more accepting and caring person. You also humble me. I understand that I too need support and that it’s not a failing to accept or need help. It’s a blessing to have people who I can count on to be present in my life, to listen to my woes and sorrows, as well celebrate in my joys. Your influence made me recognize that I value the strength that is gained in vulnerability.

To say I love you only touches on how indelible an impression you have left on me my dear boy. I am thankful for you every day and so proud to be your mom.

Posted in cerebral palsy, Family Life, Life, Special needs parenting, Wiritng | Tagged: , , , , , | 2 Comments »

HE AIN’T HEAVY, HE’S MY BROTHER
March 13, 2015

Family dynamics can often be so tricky. Each of us has our own interpretation of what is what and sadly our versions can be so vastly different leaving little room to find common ground. It’s hard to put yourself in someone else’s shoes and even harder to walk around in them.

My family has always been sort of disjointed. My brother and I have played very different roles since childhood. He was the sports hero and dutiful son, and I was, perhaps still am, the kind blunderer. As is common he was highly favored by our maternal grandfather, for whom my brother was the son he never had, and by my mother. My father and I had more of a kinship in that we both sort of floundered. Despite having many talents, neither of us ever really found our niche.

My brother and I have always had a strained relationship. On many levels we’re close, yet there’s been a long standing of contention and misunderstanding. We’re so different in our approach to life, to people, and to each other. I’ve disappointed him since we were kids. I embarrassed him in high school when I got into punk rock and changed my style to reflect the scene. I’ve never quite measured up to his successes, and have had a great many financial missteps that he sees as failings. While I eventually settled into a fairly successful career before my son was born, seeming to finally get my feet on the ground, I had to give it up to care for Cole in the early years and the absence left me with a decent job but not the dynamic career I once had.   He’s been successful in the financial community, realizing early on that this was where his talents would make him soar. I’m proud of his achievements.

Me & My LIttle Bro (1968)

We do share a strong devotion to our families and both have what can be considered successful marriages. Life and marriage goes in waves but we’ve both managed to ride them out and both have raised what I consider to be pretty fabulous children. My two nieces are two of the greatest joys in my life, and definitely the sunshine in his.

Sadly, he and I still seem unable to communicate well or provide each other with the support that we both deserve. The clash in our approach to life and to each other still gets in our way and we end up reverting to anger and button pushing. It’s a cycle that’s gone on since we were kids that even at 49 (him) and 50 (me) we can’t manage to break. I wish we could learn to talk to and listen to one another in a more positive manner, and to find a way to accept and understand each other. For better or worse, we’re family and we’re stuck with each other. I just wish it could be be better…

Posted in cerebral palsy, Family Life, Life, Special needs parenting | Tagged: , , , , | Leave a Comment »

SNOW (Hey Oh)
March 12, 2015

Our annual pilgrimage to Mammoth Mountain begins today with a five-hour road trip up to the Eastern Sierras. The excitement has been mounting all week and no one is more excited than Cole. He loves vacations like this where the day is filled with a defined activity – skiing all day in this case and ends with a group evening – dinner for 24 each night qualifies! Six families coming together for a weekend of snow fun!

We’re stocked up with lots of different playlists on Spotify and a pile of programming he can watch on the DVD player in the van, which will leave him pretty content during the whole drive. Cole does really well on long drives when we prepare well! The nice thing about having him enjoying a movie or favorite show is that it gives my husband and I a chance to chat uninterrupted or censored for hours – a rarity in our daily lives.

My husband is barbeque obsessed (he spent two summers perfecting his rub and baby back ribs and is now focusing on perfecting Texas style brisket) and my mom, ever supportive of his passion, forwarded a blurb about a great barbeque joint that’s on the way to Mammoth so he’s already planning our lunch. I’m hoping we can rope one or two of the other families driving up to meet us. Road trips are definitely more fun when you bump into familiar faces!

Cole is beyond excited to ski again. This will be his third year skiing with Disabled Sports Eastern Sierra (DSES), a volunteer based sports program that accommodates needs of all kinds. We’ve been inspired by there program where blind skiers are able to confidently zoom down the mountain and kids like Cole joyfully bounce over moguls in their bucket skis. It’s amazing.

The evenings are casual but festive with all of the families dining together. It’s a great end to the day and the mood is always high. It’s not hard to understand why Cole loves this kind of vacation…

 IMG_9009

(Last year’s gaggle of happy kids)

Posted in cerebral palsy, Family Life, Friendship, Life, Special needs parenting | Tagged: , , , , , , , | Leave a Comment »

SCIENCE IS REAL
March 11, 2015

We visited an annual Abilities Expo this past weekend. We’ve been attending it for several years and are always inspired by the variety of offerings, enhancements, technological advances, creations and tools, all designed to promote better accessibility and mobility and to enhance the lives of those with disabilities and challenges.

This is one of my most favorite things we encountered at the Expo:

FullSizeRender

Such a simple idea yet it’s just new to the market. Yes, there are similar things available but this simple bit of stretchy, strong, pliable plastic can get wet, comes in a variety of sizes and can provide support to hands or fingers trying to grip any number of things. They’re not yet available for retail but we lucked out and were gifted with a couple at the expo.

Cole is excited to cook with them. They will help him grip spoons and spatulas and even a knife (with my assistance too on the knife), allowing him to stir, flip and cut with better precision and accuracy. They’ll be great for art projects and school projects and fun things like banging drums and waving magic wands!

I plan to share them with our school, keep a couple in his backpack, my purse, the car, and at home. I’m sure as we get to using them, we’ll come up with countless ways in which they can improve his grip, hold and management of all sorts of things. I’m beyond excited about the EazyHold bands! (I’ll take some photos of Cole using them when we get started.)

We also saw, and were impressed by, a couple of test cars with rear wheelchair lifts. (We are firm believers in the rear lift!) We have a mini-van that’s been converted to include the rear lift and still has room for two additional passengers with Cole planted right in the middle. It was a life changing purchase for all of us. Although, now that we’ve seen the car with a rear conversion, we’re rethinking our next one! It would be nice to have a smaller vehicle…

We bought Cole’s Chill Out Chair at this expo several years ago (we are, in fact, into our second Chill Out Chair). The excitement of finding a seat that doesn’t have straps or look particularly therapeutic made that year’s visit to the expo worth it. That Blue Chair totally changed Cole’s home routine and comfort.   We bought an adaptive bicycle for him one year too. He used to ride it up and down our sidewalk with a gleeful smile as he’d try to run us over.

The expo is a great way to learn about new things. It’s inspiring to see what’s out there and what’s coming next.

Posted in cerebral palsy, Family Life, Life, Special needs parenting | Tagged: , , , , | 1 Comment »

EVER CHANGING MOODS
March 10, 2015

I know teenage hormones are all over the place. For months we’ve had aggressive, angry teen inhabiting my sweet son. Eye rolling, sneering and an overwhelming desire to be away from his parents as much as possible. Sadly, a lot of the negativity has been directed at my poor husband, likely because he’s the one who is around Cole more during the week and therefore gets the brunt of his frustration that I’m not home as early. It’s disconcerting, but highly typical and seems to be somewhat commonplace amongst our peers.

Thankfully, a corner seems to have been turned this past week. Our boy is back to his sweet self. He’s been more tolerant and gentler of late with consistency. Not sure if it’s the hormones balancing a bit or he’s realized that the negative behavior is unproductive or he’s simply super excited about our upcoming ski trip. They all hold some validity and maybe all contribute to his mood change but honestly, I don’t care why. I’m just relieved to have things calmer and more relaxed within our little nest.

I know the swings will continue for some time while he’s moving through puberty, growing and developing, and I’m content to embrace my darling teen during these moments of calm. Teenage angst is familiar to me and I can cope with the swinging moods but I wish I could bestow my wisdom and experience upon him to help him understand that the aggressive angry behavior isn’t going to get him anywhere but hanging out in his room alone. He doesn’t care that I’ve been there alreadyEVER

Posted in cerebral palsy, Family Life, Life, Special needs parenting, Teenage angst, Teenagers | Tagged: , , , , | Leave a Comment »

I AM THE DJ (Series – 9)
March 9, 2015

We’re getting prepared for a short road trip to Mammoth Mountain this week, which means we need some good playlists. It’s about five and half hours of driving time each way. It’s our annual pilgrimage to Mammoth…This year there are six families converging on the mountain for some skiing, hiking, and lots of fun! We’re all really excited, but no one as much as Cole. He loves skiing. Mammoth has an amazing adaptive program. He uses a bucket ski and loves to take black diamond runs with moguls and lots of speed. I can only imagine how exhilarating it must feel for him to be racing down a mountain on a sunny, clear day.

His excitement is infectious.

We’ve started watching the new season of The Voice and there have been some songs that Cole has been exposed to during the tryouts that he really liked. James Brown’s “I Feel Good” for one, which made me think it would be fun to create a playlist that has lots of Motown and 50’s and 60’s music. It’s fun car music because Cole and I both love to dance in our seats…

  1. I FEEL GOOD – James Brown
  2. WHERE DID OUR LOVE GO – The Supremes
  3. MY GIRL – The Temptations
  4. YOU ARE THE SUNSHINE OF MY LIFE – Stevie Wonder
  5. GOOD GOLLY MISS MOLLY – Little Richard
  6. ALL SHOOK UP – Elvis Presley
  7. IN THE MIDNIGHT HOUR – Wilson Pickett
  8. BE MY BABY – The Ronettes
  9. SUGAR, SUGAR – The Archies
  10. I’M A BELIEVER – The Monkees

Posted in cerebral palsy, Family Life, Life, Music, Special needs parenting | Tagged: , , , , , , | Leave a Comment »

SMARTER THAN YOU
March 6, 2015

I read a fascinating article at TIME.com that gave science-supported tips for improving your child’s intelligence. I too believe that making a strong effort to instill confidence, healthy self-esteem and providing a happy, loving environment helps children to thrive. I attribute much of Cole’s success to my husband and I supporting his interests, challenging him mentally and physically, and immersing him in a nurturing, stimulating and accepting community.

I recommend checking out the article, as it’s quite interesting – : Ten Steps Backed By Science

The basics are as follows (and more detailed in the article):

1. Music Lessons
2. The Dumb Jock Is A Myth – Be active!
3. Don’t Read To Your Kids, Read With Them
4. Sleep Deprivation Makes Kids Stupid
5. IQ Isn’t Worth Much Without Self-Discipline
6. Learning Is An Active Process
7. Treats Can Be a Good Thing — At The Right Time
8. Happy Kids = Successful Kids
9. Peer Group Matters
10. Believe In Them

While I recognize that Intelligence isn’t the only measure of a person, it is a worthy trait to strengthen and develop. A well-rounded personality tends to be more successful in the long run. Humor, empathy, compassion, common sense, courage, integrity, and self-confidence all are necessary traits to develop as well as intelligence, though I feel like the ten expressions for supporting intelligence likewise support some of these other traits.

It’s what we put into our children that ultimately help them to become their best selves. Our modeling, our support, our example, our trust, and our faith, all impact their lives and their development.

Posted in cerebral palsy, Family Life, Life, Special needs parenting | Tagged: , , , , , , | Leave a Comment »

LOST IN THE SUPERMARKET (Series – 5)
March 5, 2015

When my husband travels it’s hard for me to motivate to cook much. I have a tendency to make a lot scrambles and random things like a bowl full of refried beans with a handful of grated cheese, eaten with a spoon, or avocado toast with tomatoes. Not really meals exactly but comfort and some nourishment. Cooking for one kind of makes me sad for some reason. However, this trip, while he’s in Austin eating some sort of bbq every day (he’s a bit of a bbq junkie), I was craving Thai food so I got a curry and some garlic rice and ended up with some left over rice so I decided to make my own Thai influenced fried rice with it:

MY PINEAPPLE FRIED RICE

1. Handful of sliced cabbage
2. One half of a small onion thinkly sliced
3. 1 Egg, beaten
4. Handful of fresh pineapple in bite sized chunks
5. One half of a zucchini, cut into ¼’ half moons
6. Handful of water chestnuts (okay, I use a whole small can because I LOVE them)
7. 1 tablespoon of grated fresh ginger
8. 1 cup left over garlic rice
9. Splash of soy sauce
10. Splash of fish sauce
11. ½ tsp toasted sesame oil
12. ¼ cup fresh cilantro
13. ½ cup thinly sliced scallions
14. handful of toasted cashews
15. Squeeze of fresh lime juice

Heat a small amount of oil in a non-stick skillet. Add the onions, cabbage, zucchini and water chestnuts and cook until the onions are translucent and the other veggies are slightly soft. Remove from pan, and scramble the egg. Remove the scrambled egg and add the rice with the fresh ginger, soy and fish sauces and sesame oil. Toss together and return the veggies to the pan. Add the pineapple, scallions, cashews, cilantro and egg to the pan and mix well. Squeeze a bit of lime over the top and indulge.

The fact of the matter is, you can use any veggies you have around and can also include a protein if you want. It’s one of those dishes that is so simple but comforting and healthy.

Posted in cerebral palsy, Cooking, Family Life, Life, Special needs parenting | Tagged: , , , , | Leave a Comment »

LAY YOUR HANDS ON ME
March 4, 2015

He has beautiful hands. They look like mine. I don’t often see myself in his face but I see my hands in his. Long, strong fingers and a rectangular shaped palm. They look capable and lithe. But they don’t serve him well.

I sometimes catch him watching me do things with my hands with a curiosity and intent. He pays attention as I chop or dice. He watches me fold laundry, turn pages, and brush his hair back from his eyes when it’s longer and floppy with curl. I find myself wondering what he’s thinking as watches how able my hands are. It’s one of those thoughts that always leave me sad.

I can’t imagine not having good use of my hands. He’s never had it so I accept that it’s what he knows but I cannot reconcile it with what he sees. It’s a conversation I wish I could have with him. I can’t help but wonder how he copes with grace and dignity. I admire his patience and get so much joy when he endeavors to hold my hand in his or when he strokes my back if it’s turned from him. He tries to stroke my cheeks when we’re snuggled up closely, mimicking the loving touch I often bestow upon his soft cheeks. His touch is not as gentle but the sentiment is so endearing that it feels like the sweetest, softest stroke.

Sometimes when he’s sleepy and the cat is curled up next to him, I catch him gently moving his fingers over Charlie. Charlie knows his touch is not quite gentle, but he too, after years of knowing the boy, knows that there’s love behind the pawing and he purrs contentedly, snuggled up against his favorite person. It’s the one of the dearest friendships.

I wish, I wish a great many things, but today, I wish he had more control and use of his beautiful hands. I wish he could easily run his hands through his hair, or grab a book, or push a button, or easily hold my hand…

Posted in cerebral palsy, Family Life, Life, Special needs parenting | Tagged: , , , | Leave a Comment »

CATCH A WAVE
March 3, 2015

I resigned from my post as Secretary of the Board of Directors of THERAsurf yesterday, a
sad day for me.

THERAsurf is a non-profit organization whose mission is to give children with special needs, all needs including physical, an opportunity to experience the therapeutic benefits of the ocean by taking them into the water and up onto the waves. My son Cole had wanted to surf since he was a tot and when I met Kim, one of the two founders, we were able to make that dream a reality. He’s been surfing for many summers now and his love for the ocean has not waivered.

I got involved because it’s a truly special organization. There are other terrific organizations that do similar things, but often will not take kids with physical needs. It takes a special breed of surfer to ride waves supporting a child who needs more than just handholding. THERAsurf also really focuses on getting to know the children and to making the kids and their families feel comfortable, safe, and welcome at the beach and in the ocean. It’s their hands on approach that really makes it stand out.

With Cole’s surgery looming in early summer, I felt like I couldn’t be an active participant and board member this year. Work has become really busy and life in general busier now that my husband is traveling much more. The organization deserves to have someone who can provide attention, time and care to the position. Sadly, I feel like I can’t be that person right now. I hope to be able to do some work from the sidelines because I dearly love the organization and I love what I’ve witness in the kids who have experienced a surf day with us.

There’s nothing quite like seeing a child who cannot walk, gleefully riding waves. The confidence and self-esteem levels rise into the clouds and their families watching from the shore swell with pride. I’ve seen many a seasoned surfer brought to tears watching the kids enjoy something they too are passionate about. It’s a day unlike any other and I’m glad that I could be part of the magic…

Posted in Family Life, Life, Special needs parenting | Tagged: , , , , , | Leave a Comment »

« Previous Entries
Next Entries »