Time of the Season (The Zombies)
September 25, 2024

It’s a new season…It’s fall…

It’s been years since I last posted anything of note. I find myself living in my head so need the outlet of putting thoughts to paper so to speak. Not that any paper is involved. I feel like this is a pivotal moment in my life as well as that of my family’s. September is our shared birth month so new trips around the sun starting this month and new happenings. I think I’ll start with Cole with this re-entry into sharing.

Cole’s now 23 which I find hard to believe 23 years have passed. Having a child (young adult) who is dependent upon you for pretty much everything is a complicated existence. No matter the circumstances, bringing a child into the world, into your world, means making the child the priority. It means significant changes to your life, including unconditional love, joys and sorrows, frustration, jubilation, pride, purpose and so so much more. However, having a special needs child who is dependent on you for accessing the world, and small bits of life like personal care, mobility, communication, feeding, transferring, socializing, really, everything, is more than an outsider can imagine.

Besides all of the daily needs and tasks that go into helping create and shape a life, there is a constant need to advocate for your child in ways that parents of typical children don’t have to. It can be a full time effort to manage healthcare, insurance, social security, and conservatorships. It can be a full time effort to find the best placement or programs where your child is not marginalized, ignored, or abused.

Just before Cole turned 22 he aged out of our school district where post high school he had been attending a “CTC” (career transition campus) where he spent weekdays working on life skills, having social and community opportunities, and a focused class path (he did film production the first two years and then moved into the social media class for the duration). Knowing this would end at 22, we put him on waitlists for the handful of adult day programs in and around Los Angeles. There are actually very few programs that are appropriate, or willing to support, a young adult with Cole’s significant needs, that simultaneously are appropriate and willing to support his interests and social needs and curiosity.

At the end of the CTC, we were no closer to getting into a choice program so opted to place him in one that had availability as a transitional placement. The staff was kind, friendly and treated Cole well. He was bored, frustrated, and unhappy and it showed in his behaviors at home for the almost year that he attended. There was very little engagement, peer to peer socialization or stimulating activities. It mostly felt sad. He did not thrive, though we all agree, even in hindsight, that it was better than him staying at home every weekday doing nothing more than watching YouTube or TV while we attempted to juggle full time work and his needs.

Cole finally did get into our top choice of day programs and is starting his third week there. It’s out of our county so transportation is not provided and we’re driving at least three hours a day to get him there and back home but for now it feels worth it. From the first day his mood coming home flipped. He’s been happier, calmer, and more cooperative. He’s feeling like his days are more fulfilling. He has friends at the new program and their days are filled with activities like zumba, creating art, learning computer skills, and when downtime is needed, lounging together out of their wheelchairs watching an episode or two of Friends (one of his favorites). There will be community outings as things get more settled and chances to learn how to sell their art online, creating an opportunity for the participants to feel valued and seen. It took a lot of work and time to get him into the program (don’t even get me started on the reams of paperwork that are required), and the driving in LA morning and late afternoon traffic sucks (100 miles a day!), but knowing he’s now attending a program where he has social interaction and is making new friends, and doing all sorts of different activities, and is happy to attend is everything.

Beyond the weekdays, Cole’s still dancing on Saturday mornings and continues to love it. Music plays such a big part of his life and we took him to see Vampire Weekend (one of his favorites) and English Beat over the summer at the Hollywood Bowl (an iconic LA outdoor venue) and he loved it. I’m taking him to see Suki Waterhouse at the Greek Theater (another outdoor venue) next month with friends and hoping he’ll have the same positive, fun experience. We’re also taking him to see Ina Garten (the Barefoot Contessa) on her book tour and I’ve reached out to her team to see if she could spare a minute to do a quick “Meet and Greet” with him. She has been Cole’s favorite Food Network star since she first aired in 2002. He’s loved her for most of his life so it will blow his mind to see her in person and hopefully to meet her. We also have tickets to see “American Idiot” play later this fall. He loves Green Day and I thought it could make for a fun theater experience.

Cole doesn’t gravitate to all of these kinds of events because his anxiety gets the better of him but because these are the kinds of activities where he has good social opportunities as well as the entertainment value, I keep trying to get him to embrace the experiences. It really helps when there’s familiarity but going with friends helps a lot too. More than anything, I never want him to feel like he’s missing out on things that could bring him joy.

He’s still doing private speech and now working on a new “language” because when he aged out of our school district coverage, we had to return the communication device he had been using since high school and procure one ourselves. His new device (a Grid Pad) uses PODD software (Pragmatic Organization Dynamic Display). It’s different from what he was using for the past eight or so years so he’s been working to learn and utilize the new device. It’s not completely starting over but it is a new language. I typically describe it as he learned to speak Spanish, and is now learning Italian. Both are Romance languages and there are similarities so picking up Italian will be easier because he knows Spanish. He’s doing okay with it but could do better. He chooses not to use it more often than he should because using eye-gaze to communicate is taxing and hard and sometimes just too time consuming for him. We can’t seem to impress upon him how freeing it would feel to be successfully communicating his needs, wants or just dumb jokes. Sigh.

I feel like I could share so much more but this also feels like a good update, and writing is much needed and welcome release, even if no one winds up reading it. Just getting things out of my head brings clarity, so thank you if you happen to come across my musings and take the time to read.

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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 »

LIONS & TIGERS (Sleater Kinney)
November 4, 2019

Lions and Tigers and Bears, Oh My!  I haven’t written anything for ages. I don’t really know why because it’s truly therapeutic for me and I could really use the release of fret and fear that I have been carrying around for most of this year. Lions, tigers and bears seem minor in terms of the hurdles and challenges we’ve faced and are facing in 2019.  I plan to make time to write more so will use this first post as a bit of a matter of fact catch up.

Cole turned 18 in September so we spent several months getting things in order to set up a conservatorship so that we can manage his medical, financial and educational needs moving forward once he’s legally an adult.  All of the stress led up to a fairly innocuous court hearing whereby we granted the conservatorship rights.  It doesn’t feel great to know that we’ve essentially taken away most his legal rights, however he’s not capable of making a lot of major decisions on his own so it’s the best option.  We’ve always and will always consult with him and no one has his best interest ahead of all else than we do.  Though we received the official documents, there remains a lot of loops to close and loose ends to finalize, like closing the guardianship that was in place for most of his life.  It feels never-ending.

While all of the conservatorship stuff is going on, we also learned that Cole’s scoliosis has worsened to the point that he is having surgery in December to try to correct it as much as possible. His spine has curved to such a degree that the right side of his pelvis is nearly touching his lower right rib cage.  The distortion has caused his organs to squish together which can ultimately cause a lot of problems, including breathing and heart issues. It’s a fairly major surgery, with his back being cut open from top to bottom so that the surgeon can straighten his spinal cord and insert titanium rods to support the new position on either side.  It’s not without risks due to it being a lengthy surgery (about 10 hours), potential nerve damage, infection due to the size of the incision, but the outcome promises a lot of benefits and improved quality of life for him.  He’ll even end up appearing taller once his spine is straight, a benefit he favors most. I plan to document all of this as much as I can as I’ve not found a lot of parent information about the whole process and particularly the recovery and healing.

In the midst of these big events, we are also trying to prepare for Cole’s transition from high school to the next phase of his education and life skills training.  There are a handful of career transitional campuses (CTC’s) in our area that offer various programs for young adults with special needs where, dependent upon their abilities, they are exposed to different career tracks, in addition to life skills (basic computer skills, creating resumes, managing living spaces, finances, and the like), and continued education.  Cole’s next IEP, scheduled right when he’s due to return following the six weeks of recovery from the surgery, will start creating the foundation of the transitional IEP that will follow so we have felt pressure to make sure we are prepared in terms of knowing what we want for him moving forward.  Part of this has meant touring each CTC to get an understanding of what each offers.  There are two that are impressive, but only one that felt like it would be somewhat appropriate for Cole.  The next step will be to work with them to try to create the path for him that will feel wholly appropriate.  Never a dull moment!

If I stop to think about it and take everything going on at once, it’s overwhelming.  If I allow myself to think too much about the implications or potential outcomes of any one of these, there’s a darkness and sadness that creeps in.  At times it takes all I have to embrace the rites of passage that exist in my life, in Cole’s life.

More on that another time…There’s an amazing boy, young man, who needs me to be strong, smiling and his.  And I will be…I’ll be everything he needs.

 

Posted in cerebral palsy, Family Life, Fear, High School, Independence, Life, Special needs parenting, Surgery | Tagged: , , , , , , | Leave a Comment »

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.

Watsu

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.

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

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.

 

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

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…

 

 

 

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LEAN ON ME
September 15, 2017

The value of a quality caregiver is unrivaled, and it can come in different forms, each fulfilling a specific need or time in our children’s lives.

Summer care is always difficult for us as a special needs family. My husband and I both work full time, and up until this year, we’ve been fortunate to have summer school and day camp at my son’s school, that cover all but a couple of weeks of the summer time off. We usually do a family week vacation or staycation depending upon what’s going on with us financially and schedule wise, and find full day child care and support for the other time off. There’s cost involved, but we’ve been fortunate thus far to have had the school programs to rely upon.

Cole finished up his freshman year in high school, and had over two months off school. Because he has an IEP, he qualifies for Extended School Year (ESY), which is sort of summer school. It’s not quite four weeks of casual education at one of five LAUSD campuses, running from 8:00 am to 12:15 pm. It’s something, but it left us needing childcare for his entire summer holiday, because he still needed someone to be at the house when he arrived home from ESY and for the six hours left in the workday.

Finding childcare is a challenge in itself. We again have been fortunate thus far to have maintained contact with a few of the great support staffers at our former school, and were able to offer competitive salary during the summer and the comfort for us is that we have people we know, like and most importantly, trust with Cole. They know him, he has trust with them and they know how to care for him and to engage with him.

The value of that trust is priceless.

The first weeks of summer were easy and comfortable for Cole. We employed a woman who worked with him at his former school and who he enjoys spending time with, mostly chilling out. He has his moments when he likes nothing better than chatting, watching cooking shows and relaxing. It worked well for the post ESY afternoons, when he felt a little taxed from ESY and was happy to relax.

We then took a few days off for family time in Carlsbad, a little beach town in San Diego County that we all enjoy. Mornings were spent doing some visits to museums and the aquarium, and afternoons in the pool. Cole’s idea of perfect vacation!

At the end of this summer I engaged a former staffer from his school, who we’ve maintained a friendship with for the years since he left the school and went on to pursue his higher education in Northern California, as well as fitness and wellness interests. I thought that it might nice for Cole to have a male caregiver, and I wanted him to get out and do some stuff. The first week they watched a little cooking on the telly and then went out and shopped for ingredients and prepared some of the recipes they watched! They met friends for lunch and went to a local art studio and did some painting and they headed over to our neighbors house for a swim one afternoon.

The second week they attended a day camp I found for Cole. Their summer program was for kids aged 14 and up. Cole was amongst the youngest but really loved being among teens. Each day they did all sorts of fun activities, ranging from gardening, to cooking, to working out, to creating art. They even filmed a movie in iMovie, and did some literacy studies and practice. Their final day was a beach outing. They both made a lot of friends and pretty much had a great time. As a parent, I couldn’t have asked for more.

The bond between these two is pretty special, and having a male caregiver is something that Cole needs. He was respected, treated as a nearly sixteen year old, and engaged in age appropriate, fun, activities. The balance between being a friend, mentor, and caregiver was just that perfectly balanced. He thrived. He soared.

We now need to find someone who can be all of those things to Cole who lives nearby so that he can enjoy some independence away from his parents, and perhaps even with friends, but with someone trusted, creative, and kind, who can also balance friendship, mentorship and caregiving.

Any recommendations???

 

 

 

Posted in cerebral palsy, Family Life, Friendship, Gratitude, Independence, Joy, Life, Special needs parenting, Teenagers | Tagged: , , , , | 2 Comments »

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.

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

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 »

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