The Dangling Conversation (Simon & Garfunkel)
October 7, 2021

Quarantine has brought out the worst in my conversational skills. Having considerably fewer opportunities for actual, in person conversation and too much time spent alone, in my head, talking to myself, I’ve lost touch with the art of conversation. I find my excitement to be talking to someone outside my tiny circle leaves me tongue-tied or over-anxious to speak, thus interruptive.

As life started to open up a bit more and I’m socializing with a somewhat broader group of friends, I notice the decline of my communicative finesse. I catch myself interrupting, or worse, getting caught up in my head, having internal chat with myself. It has become a frequent cause of upset with my husband, which doesn’t make the 24/7 we continue to spend together exactly blissful.

As much a I am content on my own, I have always treasured friend (and family) time. Sharing an evening with a dear friend, enjoying a long, lingering meal and endless conversation is one of my most favorite ways to recharge. I love nothing more than to get lost in a conversation that weaves to and fro with twists and turns that eventually lead back to the beginning. It confounds my husband that these conversations seem never-ending.

Back in the day of landlines, I’d spend hours on the phone with school friends, doing our homework “together”, dreaming of boys we wanted to kiss, places we wanted to go, which lipglosses were the best (Bonne Bell Dr. Pepper!), and back to boys (of course). Those silly, intimate, protracted conversations are in part what our friendships were built upon. They filled out the gaps in the day to day hanging out and chatting. They connected us in ways that still hold true today. To this day the girls I hung out with, some since age nine, the rest since middle school, remain among my dearest. We still see each other, still share cherished memories, and still have silly, intimate, protracted conversations over forty years later.

With shared conversations being something that I relish, the fact that I’m noticing the regression in my conversational dexterity after these seemingly endless months of semi-isolation leaves me feeling a bit anxious to be back in more social settings. Though I hope that the increase of practice will have a positive impact and bring me back to good graces before I’m lost inside my head for good!

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I Won’t Back Down (Tom Petty)
October 6, 2021

Today is World Cerebral Palsy Day. It’s not a celebratory recognition day but more of an informational and support day. An advocacy day. The fact of the matter is that cerebral palsy is never going to be a welcome diagnosis. It’s a lifetime, uncurable diagnosis. Cerebral Palsy impacts over 17 million people worldwide so it’s far more common than most people recognize.

From the start, learning your baby has cerebral palsy triggers feelings of guilt, grief, uncertainty, sadness, and fear. It also incites our need to protect, learn, advocate, educate, and more than anything love. Cole’s birth was one hundred percent not what I expected. I had a healthy pregnancy. I loved being pregnant and the love I felt for the growing baby boy in my belly felt so intimate and unlike anything I’d ever felt. I fantasized about his arrival and the joys of watching him grow and thrive and meet all of life’s milestones. I imagined the kind of boy he’d be and all of the things we would share together, as a family.

However, life had a different course for us to navigate. Cole arrived via c-section, not breathing for nearly 12 excruciating minutes, ultimately requiring five weeks of NICU support before he could come home. It was determined that at the tail end of my pregnancy, I was exposed to a child who likely had Fifths Disease (Parvovirus B19 – a fairly common childhood virus that has cold like symptoms with rashy pink cheeks, also known as “slapped cheek rash”). It’s generally harmless but can be fatal to fetuses in utero. In our case, I showed no symptoms or illness, nor did I have any awareness of my exposure, but Cole and I both had antibodies, discovered by the battery of tests run following his birth. It caused him to retain almost a pound of excess fluid, which led to him to stop breathing at birth.

Thankfully, he defied the odds and “the next hours” became “tomorrow” and “tomorrow” became “next week”. I had the most basic understanding of what Cerebral Palsy meant. I have a 2nd cousin, who was in my dad’s generation, who has C.P., though no one ever called it that. In the early weeks and months, it didn’t matter. What mattered was doing everything possible to support Cole. He went home after five weeks in the NICU with a g-tube for feeding because he wasn’t able to suck.

No one really helps to prepare you to parent a child with cerebral palsy. It’s never part of the imagined outcome of your baby’s story. Once home, we quickly got into a crazy routine of eat, sleep, pump, sleep, eat…repeat. We were blessed to have a friend who happened to be a pediatric physical therapist, who kindly taught us a series of exercises to do with Cole to help coax his body to roll, stretch and move. We quickly started a daily program of attending physical, occupational, feeding and speech therapies, and then supporting the therapies with at home work as well.

We filled our heads with knowledge, and armed ourselves with a tough exterior of “we’re okay”. We weren’t really but we learned pretty quickly that no one, even family, wants to know the reality of our day to day. No one wants to hear about the loss of dreams. The truth is there’s no real opportunity to adequately mourn the loss of the child, the life of the child, you imagined, or the life as a parent you dreamed of whilst preparing for your baby’s arrival.

The other reality is that fierce, unwavering love you have for your child and your determined desire to ensure that his life is happy, rich and full leads you to learn to advocate, research, connect and to tap into strengths in yourself that you never knew existed. You become more compassionate, resilient, creative, and inclusive. You throw your efforts into ensuring that the world is more understanding and accepting of people with disabilities and differences. You do your best to support and seek out opportunities to enrich your child’s life by finding inclusive activities, encouraging friendships, and following your child’s lead.

We become the best version of ourselves so that our children can become the best version of themselves.

Just the three of us (circa 2009)

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

Don’t Stop Me Now (Queen)
October 4, 2021

One of Cole’s new dance routines at iDance is to Queen’s Don’t Stop Me Now. It’s one of my favorite songs to dance around the house to and to belt out in the car when no one (or only Cole) is listening and as teen was part of my “dancing with myself” repertoire (along with a few other songs on the Jazz album). But I think that song also has served as a mantra of sorts for me since I first heard it in 1978. I listened to that album over and over again and reveled in the power of Fat Bottomed Girls (which I believed myself to be), the teasing sexuality of Let Me Entertain You (which I admittedly have always thought would be a perfect strip tease song), the longing and romanticism of Jealousy, Dreamer’s Ball and Seven Days, and the anthemic positivity of If You Can’t Beat Them and Don’t Stop Me Now. I still love to listen to that album in order, track by track.

So watching Cole learn a routine to Don’t Stop Me Now of course put the song in my head all day and took me back to my old bedroom where I’d make up dramatic jazzy dances to it, proclaiming my fourteen year old potential and worthiness. I channeled my inner Freddie Mercury, hoping that if I could muster just a fraction of his seemingly boundless confidence and spirit, I could push through my insecurities and teenage angst and survive middle school. The funny thing is that I still find that song to be motivating, and I still find myself wanting to dance (yes, like no one is watching) to it and experience the freedom and joy it brought to me as a kid. I still find the song makes me want to break out of my head and follow my heart and dreams.

My hope is that it inspires Cole to do the same.

Posted in Family Life, Joy, Life, Motivation, Teenage angst | Tagged: , , , | 1 Comment »

I’ve Been Everywhere Man (Johnny Cash)
October 1, 2021

Though it’s still warm, okay hot, here in Southern California, there are glimpses of fall starting to sneak in. Fall is my favorite season, and admittedly autumn in my neighborhood is not as transitional as it is in other parts of the country, but being a sweater girl (to the degree that I was nicknamed “Sweater” when I was a teen because I loved to wear vintage beaded cardigans and loopy mohairs with my pegged Levis or pencil skirts), I’m donning cozy sweaters the moment our temperatures drop below 75 degrees.

The deluge of advertisements, recipe suggestions and marketing emails that proliferate my computer, billboards and storefronts too indicate that fall is upon us. Halloween, Thanksgiving and the Winter holidays are already filling space on shelves and in our thoughts. The “what are you doing for XX holiday?” queries and plans abound. The pool now gets cold overnight despite the still hot days – the nights are cooling significantly. We’re contemplating our last official swim this weekend.

Enjoying aquatic therapy at Stepping Stones

With this being Cole’s last Saturday with aquatic therapy, it’s now time to come up with weekend outings and distractions for him. For the past four months his Saturdays had him at iDance in the mornings, home for a quick lunch, and then back out to aquatic therapy. He arrives home in the late afternoon, happily exhausted, wanting Sundays to be pretty lazy and calm. Maybe a swim with us, or a long, leisurely drive, or meeting family for breakfast, and then enjoying the rest of his Sunday watching YouTube videos or favorite TV. He is a guy who relishes a day to himself after a long week – Morrisey’s Spent the Day in Bed is his jam…

Having a bit more of the weekend back open means that he’ll need to fill more of it. While I’m happy to let him have his day, I don’t like having two days of the leisurely screen time. With the world opening up a bit more I’m already making plans to do more outings with him (and when it works out, with him and friends because that is definitely his preference). He received a membership for two to LACMA for his birthday making visits to see their exhibits a no-brainer. I’d also like to get back to doing beach boardwalk strolls in Santa Monica – we did them frequently during the throes of quarantining because it felt safe and was calming to be by the ocean, explore some farmer’s markets and farms, take advantage of some of the holiday events like the drive through Christmas lights festival we did last year, and visit other museums in addition to LACMA. Getting Cole on board is not always easy but I’m determined to get him out and about on weekends.

With the weather cooling, exploring outdoors becomes more inviting as well. Cole’s never been to Joshua Tree or Big Sur. If things feel safe to explore beyond our area, I feel like day or overnight trips would make for grand weekend fun. We, as a family, don’t often do short trips but I think that having been cooped up for these past eighteen plus months, the idea sounds heavenly. I don’t feel ready for international travel yet but inching out of our comfort zone is a good start. Baby steps…

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Back in the Saddle Again (Aerosmith)
September 28, 2021

It’s me…back after nearly two years. I’m getting back to writing!

I left off with Cole still literally hanging out, in traction, waiting for his spinal fusion surgery at CHLA. We ended up there for forty seven days. Yes, you read that correctly – 47 days! And then due to some complications from pain relievers that caused internal bleeding, we were back for another several days after being home for just a few. The surgery itself was hugely successful. Cole’s spine is straight and long, his organs no longer smushed up into one side of his body, and he gained almost seven inches in stature. The surgery also improved his head control so his access to his eye-gaze Tobii communication device is markedly better and he’s gained confidence from his face front, sitting tall presentation.

We found ourselves settling back at home and into our usual work/school/life routine for about six weeks before Covid19 struck. Dan and I both started working from home exclusively March 18, 2020 and Cole stopped school right after that. On one hand, we’d just spent a month and half together in a single hospital room so being quarantined to our house with a yard and neighborhood to wander felt fairly luxurious. We adapted our days to incorporate Cole’s on-line school needs as well as his entertainment and personal needs. Cole graduated from high school, completing the year on Zoom and having a drive-by ceremony. We created two offices spaces within the confines of our small home and settled into the new (covid) normal.

Oh, and we adopted two kitty brothers who arrived the night of March 17, 2020. They were about a year and half old and I had fallen madly in love with them on a foster site I found whilst we were in the hospital. I’d been keeping an eye on them since late December 2019, and happily they were still available to adopt in March! The foster would only allow them to be adopted together because they were completely devoted to one another (still are). The boys were part of a litter she called the “tea kitties” – each kitten in the litter was named after a tea. Our boys are Oolong and Earl Grey. We kept their names because they’d had them for a year and half already and it felt mean to rename them but had we done so they’d have been Nigel and Reg, respectively.

At this juncture late in September 2021, Cole’s been back to in-person school at a “CTC” – career transition campus – a post high school program sponsored by the LAUSD. The program provides some continued education, life skills, and for those who are able, work training programs in a variety of different fields such as data input, baking, retail, silk screening, car detailing, farming, and more. Cole spent his first year on zoom and is now happily back to riding the bus to and from school, with peers and pals, and enjoying the program. He’s back at iDance and just finishing up two sessions of his summer favorite, aquatic therapy. Dan and I are both still working from home, through in October I’ll start going in a couple of days a week as our offices slowly start to reopen.

It astonishes me how adaptable Cole has been through all of these challenges he’s faced these past couple of years. There have certainly been some low points because being stuck in hospital and then at home with just us would be hard on any kid, any teen, but he got through it all without serious issues. The one thing he implemented, as a measure of self-salvation I suspect, is that he no longer willingly will join us in the living room or dining room to eat or watch TV or hangout. His bedroom became, and continues to be, his sanctuary. He enjoyed going on walks, drives, and visits with us during the worst of the quarantine, and he swam with us and enjoyed having friends over when it started to feel safe to entertain outside in the backyard, but (if I’m honest) like many teenagers, he really didn’t want to hang with us anymore than necessary and for a guy who has little opportunity to exercise his independence, we respect his decision. It saddens me sometimes but I do recall wanting my alone time as a teen so I do understand.

A big impetus of starting to write again is that I find I live in my head and these past eighteen months have not helped that and in fact have made it worse. Writing has always been the best way for me to purge my overloaded brain from everything it’s striving to sort out and process and create. Writing helps to keep me nimble. So, I’m back. No one may be reading (yet) but the simple exercise of writing is enough for me. I actually have a couple of writing projects I’d like to attempt so resuming a daily or weekly practice of writing will be a useful practice in creating as well as the brain purge. I feel positive and excited about what lies ahead!

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SOUND OF YOUR VOICE
September 26, 2016

A friend recently shared information about a service that can create a voice for people who do not speak and rely on the use of a voice output device to communicate. Vocal ID can create a voice that closely resembles what your actual voice likely sounds like by using both sound recordings of utterances if you can make them and accessing a voice bank they have to find your vocal match.

I love the sound of Cole’s voice when he uses it successful to speak, and especially when it rings with laughter. I can’t quite imagine how I’d feel hearing him speak and sound like him. The voice his Tobii device uses is a computer generated voice that is somewhat age appropriate, but a voice that is shared by countless others who are of similar age and sex and who use voice output devices. It’s not unique.

Our voices are one of the most unique things about each one of us. With closed eyes, I think I could correctly identify most people I know by their voice. Cole’s is a voice I never imagined hearing, save for the limited vocalizations he makes. To have conversations with him using his Tobii but sounding like Cole would be overwhelming and life changing. I feel like conversation becomes that much more intimate in knowing it would be his voice, unique to him.

I’m just starting to explore how to go about having his voice imprinted and put on his Tobii. I’ll share more as I myself learn more and begin the process. I signed up as a donor too, to bank my voice with the hope that it could be used to help shape someone else’s own voice.

Stay tuned…

 

 

 

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SPEECHLESS
September 22, 2016

A new television series, a family sitcom, debuted last night on prime time ABC called SPEECHLESS. The show revolves around a family of five, where the eldest son, JJ, has cerebral palsy and depicts the inner workings of this family as they navigate life.

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I heard about the show early on because someone approached us about having Cole audition for the role of JJ since he’s kind of living that character already and he’s shown interest in performing over the years. After consideration, he decided not to. I think nerves and the start of high school made him think it might be too much, and he’s probably right.

The boy who earned the role is good. He too has cerebral palsy, though I suspect he does actually speak. There are certain truths about the character that wouldn’t be in the show if he actually used a communication device to speak because either he, or his parents, would know better. They wouldn’t be seeking a “voice” for their son. They still would want a wonderfully capable, engaging support for him at school, but not to serve as his “voice”. JJ uses a laser pointer in one scene so I questioned why he would not have a voice output device that operated with a laser pointer, or like Cole, by eye-gaze?

Despite my natural predilection for pointing out the things that I think are wrong with the show, which I know are things that only I would notice or care about (or perhaps other green parents), there are a great many things that are right. I’m thrilled that there’s a family not unlike my own on television. Families of all sorts are now represented on television and finally ours. It’s a huge thing to make something like a kid being in a wheelchair, attending school, and out in the community, a familiar thing.

The value in depicting a family like ours, showing some of the struggles and challenges, but more importantly, the regular life joys and relationships and dreams, is priceless. JJ, like Cole, is a boy who wants to be defined by his interests and abilities, not by his disabilities. He’s a funny, thoughtful typical high school boy, who happens to have cerebral palsy.

The beauty of Speechless is that they do a great job of portraying everyday family life, which in most ways is no different than any other, except that some of the challenges they deal with are a little different. Every family has challenges, all siblings feel neglected at one time or another, all parents fight for what their kids need and all kids are kids, no matter what their diagnoses.

My hope is that by having a family like mine on prime time television being portrayed in an authentic manner, which includes the good, the bad, and the ugly and everything in between, with humor (because who doesn’t find humor in some of the craziness we deal with?), care, and honesty, will make people understand that despite some obvious differences, at the heart, we are all more a like than we are not.

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MAKING PLANS FOR NIGEL
September 19, 2016

My current conundrum is navigating the teenage social life, without appearing to be doing so.

Cole’s at an age where most of his peers are managing their own social lives, with parents providing only transportation input be it, actually driving, or providing access to an Uber or Lyft account, and setting some general boundaries like curfews. Kids text each other to initiate an outing, activity, get-together, and to make arrangements.

Cole doesn’t text, or talk, and doesn’t receive many texts, and never texts inviting him to hang out. He might enjoy doing so but since he’s not part of that very prevalent social networking world, he’s not immediately thought of for social activities. Truthfully, much as it pains my heart, he’s probably not thought of for such things regardless of his social networking status.

That doesn’t mean I’m not keen to somehow help him facilitate a social life of some sort, even if it’s a bit challenging to do so whilst trying to remain behind the scenes. I’m learning that this is much more difficult to manage in high school, where parents are not connecting the same way and not being on campus makes it nearly impossible to know which kids he might actually want to see outside of school.

He didn’t see friends much during the summer, which was tough and more noticeable to him than it is during the school year when weekdays are long (he’s gone from 6:15am-5pm) and weekends have activities already scheduled like baseball league, swimming lessons, and the dreaded homework. There’s less free time to fill so the absence of friend time is not as obvious.

However, boy cannot live by hanging with the parents alone…he needs opportunities to spend time with friends and to do some socializing outside of school without hovering parents. (Not that I intend to hover but the reality of Cole is that he does need some adult support most of the time). A few old friends came over this past Saturday evening to watch a movie and very informally celebrate his birthday. It was a treat to have pals who know him well and with whom he can relax, and Dan & I can pretty much fade away while they hang out. Hearing not only his laughter, but theirs from the distance of a couple of rooms made my heart swell. If only I could figure out how to make nights like that a monthly thing…

I’d also love to figure out if there are any new school friends he might want to hang out with. I keep hearing about a boy named David, who I’m told by Cole’s teacher is one of Cole’s favorite friends at school, despite Cole telling me otherwise when I ask about him. I know he’s just goofing around when I ask but I also don’t know that he’s ready to make the leap of inviting him to go bowling or something on the weekend. Time will tell. In the meantime, I’ll be working on the next movie night…

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

I AM THE DJ (Series – 13)
September 16, 2016

Lucky 13!

It’s been quite a while since I created a new playlist for Cole. I rely on Spotify searches for bands he might like and did create a failed summer play list, a 70’s themed walk through my early teens, for our road trip up to Oregon to visit my mom. It seemed appropriate to road tripping in northern California and southern Oregon but he hated it. Because he rides the bus to and from school now, car music is now primarily weekend fodder. Thankfully he’s open to new stuff and not as tuned into the little kids music of yore, unless he’s particularly cranky or tired, when the comfort factor kicks in.

My husband gave me a record player for my birthday earlier this month and we’re starting to drag some of my hundreds of records in from the garage where they’ve been resting for the better part of two decades. It’s an eclectic representation of my life, pre-marriage, pre-motherhood. Some treasures that never made it to the digital world. I’m excited to listen to some of my favorites on vinyl and to introduce Cole to more of my youth!
Here’s the playlist he’ll be sampling this weekend whilst running around town with me:

Tighten Up – Black Keys
Wish I Knew You – The Revivalists
River – Bishop Briggs
Airwalker – Jeremy Jay
Parallel Horizontal – Marine Research
The Glow, Pt. 2 – The Microphones
Jessica – Lime Spiders
Spirits – Strumbellas
Righteously – Lucinda Williams
Veni Vidi Vici – Black Lips
Going the Distance – Zipper Club
Girls – Beastie Boys
It’s Alright For You – The Police
Roll to Me – Del Amitri
Juicebox – The Strokes
Crash – The Primitives
Think I’m In Love – Beck
Giant – Banks & Steelz
I Know – Shovels & Rope
The Ledge – The Replacements
I’m In Love – Teenage Fanclub

 

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HAPPY
September 15, 2016

We’re now almost a month in and dare I say, high school is going well. There were big bumps leading up to the first day, and a small one on the actual first day – the aide who was supposed to ride the bus with him didn’t show up in the morning so he rode alone with the driver until they picked up the next kid. Apparently, not legal so we made the wrong decision in allowing him to go, but the aide did eventually catch up to him on the route and he arrived safely for his first day.

His schedule got sorted out and he even has a close friend from CHIME in one of his general education classes. I think it’s helpful because having a typical, cute, volleyball team, girl chatting with you and laughing with you goes along way to inspiring other kids, kids who have not previously attended school with someone like you, to talk to you too. He’s making friends, slowly, but it’s happening.

School friends…not necessarily the friends you do stuff with on the weekends. That seems harder to navigate in high school, where parents are interacting in the same way and the community itself if much larger. At this age, kids generally start to take charge of their social lives so for a kid like Cole that becomes a bit more challenging without parental support and intervention. We’ll see.

Overall, the school has shown a great interest in making sure he’s supported, challenged and engaged. He really likes his main teacher, his special education teacher, who he has for several classes, and the general education teachers likewise are making efforts to ensure that he’s participating and part of their classroom community. It’s really quite impressive.

All that said, and I’m really not complaining, but it’s still not exactly what was promised. The LAUSD high school system is very different in terms of how it approaches kids like mine. Inclusion is not a concept that is implemented at the high school level. They mainstream, which is more a sink or swim concept, and where I’m thankful he’s at a school where the administration has more than a passing interest in inclusion more so than mainstreaming.

At the end of the day, this month has gone well. He comes home tired, but happy. He’s adjusting to the crazy schedule – being picked up at 6:10 am by the bus and returned to our door sometime before 5 pm at the end of each day. Him happy, it’s all that matters. The other stuff can work itself out.

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

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