CONNECTION (The Rolling Stones – also Eddie & The Subtitles did a good cover)
September 26, 2018

I took a basic watsu training class this past weekend, spending the better part of Saturday and Sunday in a 95-degree shallow pool with five other women, who were also taking the course.  I didn’t know much about watsu, other than Cole’s aquatic therapist was also learning it and thought it would be useful for me to learn the basics, so I could use it to help stretch and relax Cole at home in our pool.  I love water, and I love learning new things – especially when it’s something that can help Cole.

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I nervously showed up Saturday and met the others.  Three were women who were already in the aquatic therapy business, wanting to expand their practices and knowledge, one was a mom, who is considering a watsu practice when her four kids are all in middle and high school, and me.  We were joined on Sunday by a woman who does energy work already and has already completed about her watsu training.

The first half hour we learned about watsu and its benefits.  Watsu is a form of aquatic therapy that combines muscle stretching, joint mobilization, and shiatsu massage.  It’s done in chest deep warm water, where the “receiver” is continuously supported by the “giver” (or therapist) while back-floating.  The receiver is rhythmically and passively cradled, moved, stretched and massaged by the giver and water.  Watsu promotes deep relaxation and, in my experience, euphoria.

After the basic introduction we all got in the pool and watched part of a training video, so we could see an actual practice.  Then we began learning the stance, moves and an understanding of the symbiosis of the process.  We worked in pairs throughout the day, switching between being the giver and the receiver and working on different bodies.  The better the giver can connect and adapt to each receiver (every body is different, not just in size but in flexibility and trust too) the better the experience will be.  By the end of the day we had learned the entire basic sequence and practiced each element over and over.  We all left feeling empowered and connected by the day.

Sunday we all reconvened and immediately got back in the pool.  We were joined by a woman who does energy work and has already completed about half her watsu training hours.  Having a sixth person allowed us to all work on our technique and practice with each other while our instructor could move through the pool and give us each more hands-on training and support.  We all gave and received three full hours of treatment that day.  It was amazing.  Unlike anything I’ve ever experienced.

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There’s something almost spiritual in the practice of watsu.  The relationship between the giver and receiver and water is harmonious in a way that at times you feel at one.  Breath plays a part in watsu as it does yoga.  There are quiet times when the giver synchs their breath to the receiver and as one you rise and fall slightly in the water as you breathe.  There’s a deep sense of relaxation and rejuvenation resulting from the treatment and connectivity that transcends the treatment. I’m completely enthralled with watsu. I plan to take more training even if I don’t complete a program for certification.  I just want to be able to give Cole (and other family and friends) the best experience I can.

FOREVER YOUNG (Eddie Vedder)
September 20, 2018

Cole’s turning seventeen today.  Yes, that’s right, the boy is seventeen years old.

It’s hard to believe that we’ve been riding the wave of his life for seventeen years.  When we became parents to Cole in particular, our own lives ceased to be our own lives.  I think it’s a reality of parents with 24/7 children in a way that is vastly different from parents of typical children.  In many ways, kids like mine are forever young.

Cole’s at an age where most his peers are wildly independent.  They’re staying home on their own, managing much of their social lives and school activities, and many of them are driving.  They’re all starting to contemplate the move from high school to college and hunkering down with their studies to ensure they have top grades, interesting community service in place, and strong SAT scores.

Seventeen looks very different in our family.  In some ways it doesn’t look much different than sixteen, or fifteen or fourteen, which in all honesty breaks my heart, because I know eighteen will likely feel the same.  Cole has delays in his development and will likely never pass the four foot mark.  In many ways he’s neurologically on track, but in other ways his comfort is still found in the same things that brought him comfort and joy when he was little.  His needs remain high, though to us fairly simple and second nature.  We struggle with the same obstacles – encouraging him to want independence, to use his voice (his Tobii – an eyegaze voice output device), and to develop new age appropriate interests.

Yet, he seems content with his life.  He loves high school and has made some good friends who he sees outside of school too, while still maintaining some of his life-long friendships, and he does well in his classes, excepting his lack of interest in using his Tobii has proven to be a frustration to his teachers and peers as well.  Outside of school he’s still happily participating in iDance and enjoying playing in his Champions baseball league.

He’s developed an interest in photography thanks to his summer spent hanging with Nelson.  Art has always been something he enjoys dabbling in but the interest in photography is new and we’re hoping to help him to expand it.  We bought him a camera that he can operate using an iPad/iPhone as both the viewer and button or a switch to take the shot and are keen to see where this hobby takes him. In typical teen fashion, any curiosity we show in his photography is met with eyes rolling and the shut down…

Ebbing on seventeen has also broadened his willingness to expand his musical repertoire and his TV viewing.  There are still times where only the music of Ralph’s World or Sesame Street or endless Holiday music will satisfy him but there are other times, more frequent times, when I can introduce new bands or playlists to him and he’s pleased.  I’ve been having the success with his TV down time. I’m not willing to watch endless hours of Little Bill or even The Barefoot Contessa, so constantly try new things and movies and lately, as he neared seventeen, he’s been a willing viewer. It gives me hope.

I’d love it if he’d show an interest in books.  I feel like resources like Audible could give him some independence and off screen time but still engage and entertain him but he’s not quite there yet.  I love to fall into a good book and so does my husband. To have Cole develop the love of a good book would please me to no end.  Oh the places, people and adventures he could explore…

Turning seventeen brings him a year closer to being an adult and having more adult feelings and curiosities. He has always been very fond of girls and has had crushes here and there over the years but this summer he fell hard.  It’s unchartered waters for us and I don’t really know what romance looks like for him.  I feel like it needs to be treated differently than the way I facilitate or manage friendships, but I don’t know exactly what that means.

I am keenly aware that much of my mixed feelings about Cole aging, or not, are just that, my mixed feelings.  Feeling blessed to have my son in my life, and loving him more than I can possibly convey can live with me sometimes mourning the loss of typical experiences both he and I would have had if things were different.  I don’t know if he considers “what if” in his own mind, and I avoid it when I can, but I’m human and I sometimes can’t help but wonder, or be sad.

IMG_1768My boy is seventeen today. Yes, seventeen years old!  He’s remarkable and brings grace to every day of my life.  I celebrate him today and everyday and hope that he’ll remain forever young…

IT’S MY LIFE (Jon Bon Jovi)
September 19, 2018

Sometimes I marvel at the things I know about because Cole is my son.  While it’s now all old hat to us, we had an extra learning curve beyond simply being new parents, when he came into our world. We had all of the usual stuff and then all of the medical and therapeutic interventions to contend with, as well as quick introductions to agencies and supports and special education. And of course, random weird things that come into our life.

In case you don’t know, Cole is fed through a g-tube.  The only way we could leave the NICU, after five long weeks, was to have a g-tube inserted because he was not able to suck a bottle or boob.  We had hoped he would catch on when we got him home but seventeen years later he’s still tube fed.

Yesterday I was placing an order for his feeding supplies, which typically includes his formula, gravity flow bags and every other month a new mickey-button (the part that actually is inserted into his belly and held by a little tiny balloon that holds 5 cc’s of water).  I was asked what size, because they like to have you repeat every detail of the order, your contact details and lots of details about Cole EVERY time you call to place a monthly order to make sure you are who you say you are and are ordering supplies for who you say you are ordering supplies for – I’m assuming because there’s a huge black market demand for formula and mickey-buttons.  Anyway, I digress.  I give the size, 16 French, and it occurs to me that I would never know what that means if not for Cole.

Tubing, often catheters and feeding tubing, is designated by French or “Fr” to note the size of the tubing. It’s a French scale where every millimeter is multiplied by .33 (Fun Fact: The French are fond of the number “3” – I deal with withholding tax at work and the France to US withholding tax is 33.33%), so Cole’s tube is 16Fr multiplied by .33, making it 5.28 millimeters wide.  Pretty small.

In the years of parenting Cole, we have had to deal with some many different therapists, agencies, doctors and medical interventions.  He’s had surgeries and treatments that exposed us to so many new adventures.  When he was still small enough to be tucked in to a Baby Bjorn, he did acupuncture to help open his brain flow.  I’d wear him and spend the whole time trying to keep him from puncturing me once his head was full of needles!  He did botox in his hips and arms before it became mainstream for faces, he had his back and neck muscles supported with Japanese kinesio tape before it was available in the US, and now gets Watsu (aquatic Shiatsu) massage when he does aquatic therapy.  I’m actually going to take a two day Watsu training class next weekend so I can take advantage of our pool and support his aquatic therapy at home too.

Being his mom keeps me on my toes and keeps me expanding my knowledge and researching every little potential interest, development, resource, product, therapy, intervention that I hear about related to cerebral palsy, communication, inclusion, education, life as an adult with special needs, etc.  I’m sure I miss a lot but thankfully I have a community of moms who all do the same and we share.  It’s a unique experience that thankfully we share with a welcoming wonderful community of likewise unique families.

 

WITH A LITTLE HELP FROM MY FRIENDS (The Beatles)
September 18, 2018

I saw a post today, shared by a friend in Australia, about a friend of hers who just had a baby. There were complications with the delivery and her daughter has been diagnosed with cerebral palsy.  The post was asking for donations for the baby’s current and future care.  I wanted to write on the post that with seventeen years of experience with a similar child, it’s going to be okay and that despite the dramatic entry and overwhelming sense of the unknown, life will be joyful and their child will be loved and happy.  I held back though because I’m never quite sure if people want to know this while they’re in the throes of trying to understand their new reality.

This doesn’t just apply to this particular situation.  I struggle with it in all kinds of situations.  I have come to realize that often people don’t want to know that there are other people who have walked the path before them and can shed some light on the journey.  I also worry that it comes off as “know-it ally”, which is never my intention.  So I often opt to hold my thoughts.

I, for one, am truly grateful for advice and support, and I cherish the guidance of those who have similar parenting journeys because between all of us working together we have quite a network of research, connections and experience that enriches the lives of our children beyond what one lone set of parents can do no matter how savvy.

One of my fantasies is to one day create a compound living situation, preferably near the beach, with a therapeutic swimming pool, accessible gym complete with an infrared sauna on the property, where other families like ours could all live with their 24/7 adult kids (either in independent homes or with family) and support one another.  Some of us have kids that will likely remain with us for life but there are ways to provide some independence for them within a fixed community and to allow parents to have some independence as well.  It’s a fantasy but not completely outside the realm of possibility.

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We can go it alone but in my experience it’s always better with friends…

 

 

 

TALK TO ME (Chris Isaak)
September 15, 2018

Cole’s first junior year report card arrived yesterday.  Straight A’s. He’s fairly consistently receiving A’s and a very occasional B on his high school report cards and always with E’s, and is always proud of himself when the grades are revealed.  We are proud too, of course.  For Cole, the grades are both a mix of subjective grading, his effort, and his understanding of the given subject.  He has modified work and the benefit of one on one class time with his Special Ed (SpEd) teacher.  It doesn’t diminish the grades and is certainly reflective of the attention he puts forth in class.  He takes a fair amount of pride in maintaining his grades and in the attention he receives for doing so.

I just wish he put forth the same interest and effort in developing some of his communication skills and independence at home.  He would gain so much by engaging in conversation with people outside of school, including me and his dad.  He has friends who desperately want him to use his Tobii (eye gaze generated voice output device) to talk with them.  Teens, even understanding, kind hearted teems, don’t always welcome the parent invasion when they’re hanging out.  Having time with friends, independent of a parent or even of a support adult to help facilitate conversation, would be so incredible for him.  It’s such a valuable facet of friendship.

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I’ve gone so far as to suggest to some friends that they tell him that they won’t chat with him until he starts chatting with them using his Tobii.  His friends are too sweet to listen to me and continue to talk to him despite his aversion to the Tobii.  He met a girl this summer who is very similar to him in diagnosis and also uses a Tobii, though she is happily reliant upon it and uses it well and often. I’m told she pressed him to use it during summer school and he was slightly more receptive, which makes me hopeful that he with the right motivation he’ll warm to it.

I understand part of his reluctance, or disdain, for the device.  Cole’s a people person.  He’s very keen on eye contact and adept at communicating some of his needs and reactions through small sounds and various facial expressions and smiles.  The Tobii obstructs his direct view of people he’s “talking” with.  It’s also taxing to use, both physically and mentally, so an element of laziness factors in too, especially if he’s asked to use Tobii with his dad and I.  We’ve developed a strong understanding of him, but even with us there’s so much left to our interpretation.  He’s often just not bothered enough to be frustrated or care. I really wish he were.

I just want him to use his voice…to express his thoughts, opinions, and needs.  I want him to deepen his friendships by opening them up through mutual communication and the intimacy that comes from friends sharing. I want him to engage new people in conversation or to initiate conversation. I want him to show interest in other people by asking questions or simply saying “Hello” aloud.  I want him to expand upon his education by using his voice to express his knowledge and understanding.  I want all of these things for him…

If only he did…

Anthem (Leonard Cohen)
September 14, 2018

There is a crack in Everything. That’s how the light gets in…

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It’s one of my favorite song lyrics from the Leonard Cohen song Anthem, but a long standing notion that the crack or imperfection is what gives us a path to greater existence. Rumi, the Sufi poet and philosopher, has a similar oft quoted line, “The wound is the place where the light enters you.”, invoking the same idea of imperfection being a road to enlightenment.

I feel like this is the endless journey I have encouraged myself to pursue.  It’s one of acceptance and betterment and I hope to travel it for the rest of my life.  For most of my teen and adult years I’ve struggled with confidence, self-love, and frequently battled myself and losing.  I tend to be my own worst enemy and harshest critic.  I allow my insecurities to shout the loudest and engage them to idly defend me when I feel put upon or angered.  They’re not my best voice because they prevent me from seeing myself or allowing me to be vulnerable.  They’re cruel and lash out.  They deflect.

I’m trying to teach myself to step back and react from my heart even if it means admitting I’m culpable in an action or behavior or that I myself feel hurt or scorned by someone or an action.  Decades of unfettered reaction are slow to turn around but it’s an effort worth taking because when I’m successful, when I approach conflict with calm and sincerity, it’s resolved amicably nearly always.

I want to be a good example for my son, an example of someone who has flaws but is constantly trying to evolve and resolve and flow.  I want him to see that he can be fluid in this way and open his heart and mind to be kind and caring even in conflict or stress.  I want him to know that the pursuit of enlightenment is something more personal and internal for every one of us, but that the result of this endeavor results in a gentler, kinder community and world.

When I was a kid, I was often as described as “nice”.  I kind of hated it because I likely wanted to be thought of as the pretty one or the cool one or the smart one.  No, I was the nice one.  In retrospect I greatly appreciate the compliment.  We should all strive to be the nice one. We should all let the light shine through our cracks…

 

 

 

WHAT MIGHT HAVE BEEN
November 27, 2017

I had this flash of anger this morning that quickly turned to sadness. I pulled up behind a car with a license frame that said “The Best Moms Get Promoted to Grandmas”.

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Seems innocent enough but it smacked me in the face. Another reminder of what might have been in my parenting experience.

I don’t generally feel sorry for myself or for the lost parenting experiences I have because I am the mom of a (often whispered) special needs child. From day one my parenting experience has been unique and different from what I had imagined becoming a mom would be like.

Let me be clear, being Cole’s mom is the singularly most amazing experience I’ve ever had, but it’s not without bouts of mourning some of the milestones and joys that typical families celebrate. I’m human.  The moments of sorrow are fleeting and run the gambit.

I could run through the list but it would bore you, or give you cause to pity me and there’s nothing I like less than boredom or pity. The fact is there exists a long list of the joys and successes that fill my heart. They too are unique and different from what I had imagined but every bit as relished.

Becoming a grandmother is one that I hadn’t thought much about since I’m way too young to be a grandmother! HA. I just hadn’t ever registered that I won’t become a grandmother.   Seeing that license plate frame pissed me off, and then I was stuck behind it as I crawled the miles through the canyon to work. It just kind of sucked.  I’m a best mom…and shall remain so until the end…

Happy Monday to me.  Just needed to vent…

 

WONDERFUL WORLD, BEAUTIFUL PEOPLE
October 16, 2017

“Take a look at the world,
and the state that it’s in today,
I am sure you’ll agree,
We all could make it a better way.
With our love put together,
Ev’rybody learn to love each other,
Instead of fussing and fighting.”
Jimmy Cliff

There have been so many natural and human disasters around the world recently. It seems endless and it seems impossible to know what to do to help besides throwing whatever money one can afford to throw. But that doesn’t feel like it’s enough and it precludes any direct connection with the victims, and fall out.

After seeing the devastation in Florida, Puerto Rico and the US Virgin Islands, and the tragic aftermath of the senseless shootings in Las Vegas, or the massive loss of life in Somalia due to two car bombings, we look to one another for answers, comfort, and relief. We hold our loved ones tighter and make effort to let those we love, know we love them. We join campaigns and donate to organizations to provide assistance. We hope that our own cities won’t be the next struck by any kind of tragedy, natural or manmade. And we then we go about our lives feeling we’ve helped.

And we have. Being kind to one another is important and providing much needed funds to relief efforts is necessary. Going about our normal daily lives is also important both for our communities, our families, and us.

But there are some people who think outside the box and make effort to effect change and to impart a different kind of care, the care of action. I am blessed to know one such angel, and I want to share what she did in the wake of the Las Vegas tragedy. She made a pilgrimage of kindness to Las Vegas; where she did fifty-eight acts of kindness, encouraging each recipient to pay it forward themselves, in honor of each of the fifty-eight victims.

The deeds ranged from surprising random diners in Flaming Fajitas with gift cards to cover their meals, to presenting flowers to a senior in an assisted living home, to paying for haircuts at a local Fantastic Sam’s, to bringing pizzas to the first responding police station, to providing her cab driver with a generous tip, that he then donated to a collection his company had going to provide aid to the victims, and so much more. Each deed was accompanied by a note with the name, hometown and age of the shooting victim she was honoring. Many of the recipients had stories of their own to share with her and ideas for paying her kindness forward on their own.

She touched an entire city. She connected with people on a whole different level. The local paper caught wind of her mission and wrote about her. She shared the journey on Facebook and had lots of supporters wanting to help facilitate her passion. She took the idea of helping a step further than most of us even conceive. I know her to be one of the kindest, most caring, friendly, enthusiastic people I’ve ever met and I’ve been inspired by her since she came into my life. I aim to think outside the box like she does. I hope you will find inspiration in her actions too.

58 Acts of Kindness

MANIC MONDAY
October 9, 2017

Generally I don’t have anything against Mondays. I view Monday as the beginning of the week and I tend to like beginnings, as opposed to endings. The start of things, days, events, have an optimism and hope that aren’t as certain to be carried through to the ending.manic-monday

This morning the boy struggled to wake and was grumpy. Granted, I’m not keen on our 5:30 wake-up time either and I find as he matures into his teens, it’s harder and harder for him. Don’t get me wrong he’ll never be the sleep until noon kind of teen, sleeping in to him is more like 6:30am or, gasp, 7:00am! I think he’s just a point where his preference is not be awakened, but to wake naturally, even it were to be at 5:30am, which is what happens often on weekends, when he can actually sleep in! Then, he wakes happily, wanting nothing more than to lounge in bed, watching something mindless, or snuggling.

This morning though, he was a bit of a bear. My solution? Loud music and crazy dancing. First laying next to him, helping to move his arms and waving my hands and legs in the air like an upturned beetle, then me dancing around the room while he shook off his morning blues and eventually laughed, and laughed. On occasion, I can be hilarious! It worked though and to my mind, a quick bit of dancing is a nice way to get the day started.

With that in mind, I haven’t shared the songs that make up my post titles for quite a while because I’ve been so terrible about posting so I thought I’d use this post to do so. Since the last time I shared, here are the songs and artists of recent blog titles:

Manic Monday (The Bangles)
Don’t Stop Believing (Journey)
Swimming Lesson (The Eels)
Sixteen Forever (The Dictators)
Just Like Starting Over (John Lennon)
Changes (David Bowie)
Lean on Me (Bill Withers)
Sharp Dressed Man (ZZ Top)
Summeritme Blues (Eddie Cochran)
Sound of Your Voice (Bare Naked Ladies)
Speechless (Michael Jackson)
Making Plans for Nigel (XTC)

Looking forward to a cheerier Tuesday…

 

 

 

DON’T STOP BELIEVING
October 6, 2017

Today is World CP Day.

I like that there are agencies and organizations that strive to educate and inform the public about cerebral palsy. It affects millions of families and individuals, some more obviously than others, and from my experience is often misunderstood in terms of the perception most people have about CP.

For my family, everyday is CP Day.

Cole came into this world not breathing. Not breathing for twelve minutes. The lack of oxygen to his brain caused injury. In his case, his physical abilities are largely compromised. He is non-ambulatory, non-verbal, g-tube fed, and has fine and gross motor skill compromise. His cognitive function is fully in tact. He is bright, witty, compassionate, loving and kind. He has delays both socially and educationally, largely due to the effects of the physical disabilities, but he has friends and loves school.

 

From birth, doctors prepared us for everything he wouldn’t, couldn’t or shouldn’t do or be. Their collective portrait was not particularly optimistic. We believed otherwise. We poured ourselves into doing everything we could to make sure he had every opportunity to lead a full, happy life.

There’s no handbook for raising a child like mine. There are doctors, friends, teachers, peers, who you can look to for advice, experience and support, and there are more and more non-profit opportunities for social activities, sports, and fun for kids with special needs. There are endless sources on the Internet now and on line and off line parent support groups that give strength, support, and experience too.

There are also countless therapies, treatments and interventions that can help a lot, or more often nominally, and it’s an easy source of parental angst for me, and others I know, how to know whether you’re putting your child through hours and hours of effort that may not go anywhere, for yourself or for the good of you child, and whether or not there is more value in finding some sort of balance between therapies and interventions, and providing your child with a semblance of a normal childhood, spent with friends having fun and enjoying life. It’s a catch-22 situation because you’re always left with that nagging, what if we had tried “XX”? Or maybe we should be doing “YY”.

I grapple with those nagging what if’s but I also do believe that we’ve managed to raise a boy who is exceeding expectations of what his life would be like, and who gracefully handles the lot he’s been handed. It’s not all sunshine and there have been dark periods in both his life, and in our family life, but overall, he’s leading a life that is not wholly unlike that of his typical peers, and for that I am grateful.  I will never stop believing in the power of Cole.  He challenges me to think beyond myself and inspires me to dream.

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