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)

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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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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.

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TAKE A CHANCE ON ME
February 23, 2016

The high school process continues. The great news is that Cole got into our top choice for him. The bad news is that the hard work is still ahead of us. The school he got into is an independent charter high school. It’s small, fully inclusive, and open to the challenge of having a diverse student body. It’s a performing arts charter but Cole was accepted to their liberal arts program.

They’ve never had a kid like him, but the reality is very few schools have. Cole’s unique beyond just his obvious challenges. I’m not sure where kids like Cole go to school but this process has shown me that very few schools are open to the unknown. Spectrum diagnoses are now apparently commonplace enough that they do not rattle most mainstream schools, and there are endless private options available to these kids.

The task of managing a child with physical needs is apparently more daunting to school administrations, than say some of the significant behavioral issues that can accompany many spectrum diagnoses. Add in the non-verbal component and he becomes even more so. The reality of a kid like Cole, who is by all accounts friendly, interested, cooperative, and bright in class, is that once people know how to manage his physical needs and to work with his technological accouterments (i.e. his Tobii), he’s a pretty easy kid.

Yes, he needs modifications for some of his schoolwork, and even the occasional accommodation, usually extra time, but even that isn’t terribly taxing. The big problem as I see it is that there just aren’t enough kids like Cole in general, and more pointedly, who want to be fully included. There aren’t even enough to motivate an innovative school or non-profit to start a specialized school for kids like him, as we’ve seen happen in the last decade or so for kids on the spectrum.

Neil Young started a very tiny school, which I believe emerged initially from a camp program that focuses on assistive technology for kids with cerebral palsy. It’s for younger kids, and handful at that, who can afford the private tuition. I’d love to send Cole to the camp to better his Tobii skills, and to perhaps help motivate him use it in social settings, and not just at school.

For Cole, whose only education experience has been in fully inclusive settings, and his only social group is a diverse pool of kids, mostly typical, the best, least restrictive setting for him is a high school that can provide the same. He’s motivated by peers and teachers who are seeing him, Cole, not the wheelchair, not the Tobii, just Cole, the boy.

Getting a school to take the chance of having him as part of their community is proving to be harder than anyone led us to think it would be. If the school of our choice can be convinced to take the leap and to go for it, the rewards of having a kid like him in their student body would be far greater than the accommodations and modifications that would be required to do so.

He brings something unique to the party and it happens everywhere he goes. I know I’m his mom, but I’ve seen it happen everywhere he goes. He has the ability to attract people, to make peers feel comfortable, cared for and important, and to make a lasting imprint on teachers and staff. He has countless checkout people at our regular haunts, and waitress staff at favorite restaurants that count on smiles from him and return them just as openly.

If he can continue his education at this school, he’ll find his place quickly, routines will become established, and life will go on, just slightly altered, and most certainly improved, by him being there.

Please!!!!  Take a chance on Cole!

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I AM THE DJ (Series – 12)
January 12, 2016

I’m still feeling blue about the death of David Bowie. It’s amazing how much influence he had on nearly everyone I know. His music was a constant of the playlist of my life. My dad had his late ‘60s folk album, David Bowie, and I loved There Is A Happy Land and Uncle Arthur. They still occasionally appear in current playlists. As my dad transitioned a bit out of Bowie, I fell deeper as I approached my teens and Bowie delved into glam and rock. There was no one like him. I remember watching him on SNL, and the show that followed SNL in Los Angeles, Don Kirshner’s Rock Concert whilst babysitting. I had the great fortune to see him live a few times and he never failed to thrill. He was innovative, unique, passionate, and fabulous. By all accounts, he was kind, generous and caring too. A man among men, and a brightly shining star in whatever universe he chose to illuminate.

The search for music Cole will enjoy during car rides and downtime continues. I’m getting better at honing into more likes than dislikes. Here’s the January list we’ll try this weekend:

Young Americans – David Bowie
If the Stars Were Mine – Melody Gardot
Song For Someone – U2
Give Me A Try – Wombats
Way Down We Go – Kaleo
Talk To Me – Kopecky
Rebel Light – Strangers
Gone – JR JR
My Type – Saint Motel
Get Off This – Cracker
Could Have Been Me – Struts
Ready to Start – Arcade Fire
Money Maker – Black Keys
Nobody Really Cares – Courtney Barnett
Rebel Rebel – David Bowie

David_Bowie-Masayoshi_Sukita-01

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THANK YOU
November 27, 2015

I meant to post this on Wednesday and time got away from me…I hope everyone had a lovely holiday!

With Thanksgiving just days away, it’s only natural that one starts to contemplate the things they’re thankful for so that when the question is inevitably posed to the feasting table of friends, family and others, you have the seemingly perfect spontaneous response.

That’s not meant to be cynical at all. I just suspect that I’m not the only one who does better at public, yes, even a table of eighteen is considered public in my book, speaking when somewhat prepared. Besides, it’s good practice to be thankful and appreciative. Many wellness proponents recommend daily gratitude exercises as a means of learning to be positive, thoughtful and kind.

I’m thankful for quite a lot.

The middle of this year was stressful and trying and while it’s continued to be more difficult than anticipated in terms of the healing process for Cole, both physically and emotionally, the light is starting to peek through a bit and I feel positive about the year to come. So, I ‘m thankful for Cole truly starting to heal and to quite literally finding his footing again.

I’m thankful that my mom is near, and that she and Cole have such a loving, sweet relationship. I so look forward to seeing her each weekend, mostly because I love how much Cole adores her and enjoys getting lost and lunching with her.

Her boyfriend (yes, my mom has a boyfriend, which sounds funny for seventy somethings!) also has my gratitude. He’s never treated Cole as anything but one of the guys. Cole loves their covert conversations about girls and getting into trouble and delights in his stories. Cole’s desperate to have him teach him to play poker!

I’m beyond appreciative of all of the people who reached out with cards, letters, and treats for Cole when he was recovering. The support was amazing and the practice of reading each card, and learning about the author, and writing back was a great diversion from both recovery and TV! The love was overwhelming.

Along those lines, on a daily basis, I appreciate and would be lost without my growing and deepening network of friends who inspire, teach, support, and love me every single day. Without you I don’t think I’d have my sanity. I take example from each of you on how to be a parent, advocate, friend, and partner. You’re there when I need to laugh, cry, bitch, share a glass a wine (or two).

Finally, I’m thankful for my family. I am blessed to have a husband who is one hundred percent dedicated to our family and who does his best to see that Cole’s life is as rich and full as possible, and to have a son who makes every day brighter. Being Cole’s mom has taught me more about grace, determination, compassion, and love than I thought a single person could. I’m blessed for every day I get to be his mom.

photo[3]

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MAGICAL MYSTERY TOUR
November 23, 2015

We’re trying to solve a mystery…

Some rather angry bruises appeared on Cole’s inner thigh last week. They look like a series of overlapping oval shaped bruises so whatever is causing them is something that occurs continuously throughout the day(s). The mystery is what.

All of the equipment he uses on a daily basis is equipment he’s been using for a while prior to the bruising, and even post surgically without bruising. None of the various strapping or harnesses or wedges really sync up with the location of the bruises and there’s nothing else he’s doing differently that could cause them. It’s frustrating and curious.

We’ve noticed that when he’s home and wearing the knee immobilizers (he has to wear them at night for a year while his body continues to heal from the surgery), he sometimes slips his fingers into the top of the knee immobilizer, which has led us to wonder if he’s causing the bruising himself. It seems unlikely but nothing else seems like it’s the cause either.

This is one of those times I wish he could just tell us what’s happening…Miss Marple I am not!

 

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SAY IT ISN’T SO
November 19, 2015

I toured a local high school this morning and then spent the hour drive to work trying my best not to cry.

We’ve spent most of Cole’s life fighting in one way or another for something or other. Very little comes easy in the lives of children with special needs, especially when you want your child to experience as typical a childhood as possible. We’ve never wanted Cole’s disabilities to prevent him from experiencing anything that interests him. He may have unique ways to approaching things, but we’ve been fairly successful in providing him with a fairly happy, rich, normal (ish) life.

It feels like it all comes to an end with high school. The tours tend to highlight all of the amazing academic and elective programs that each school offers and the opportunities for preparing for college and glowing futures. Fabulous programs are available to good to great students, but only those who do not have disabilities and may require support to access the curriculum. Students like Cole are relegated to special day classes where their opportunities are vastly limited.

Never mind that he’s managed to get through nine years of school with the same kids who will be advancing into high school programs where they have a world of exciting classes to choose from and clubs, electives and sports. If he were to attend the school that I toured today, he’d be left with access only to special day classes that are on the first level because the school is not wheelchair accessible (no functioning elevators in 2015!).

Physical space seems to a prevalent problem with most high schools. The desk spacing is so tight that there is barely room for a student to slide down a row to their seat, and definitely no chance for a wheelchair to fit beyond the doorway. How is that legal? There’s an obvious disinterest in any form of inclusion at most high schools.

My kid may not have the ability to complete high school in four years, however, that doesn’t mean that he doesn’t have the ability to eventually complete it, and move on to college. I can’t say for certain what his future holds, but I can say that without the opportunity to have access to a decent education it won’t be as bright as it could be, as it should be.

But it doesn’t seem like anyone is even trying. So now, tears…I held back as long as I could.

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BALL OF CONFUSION
November 18, 2015

This morning Cole had a strange reaction to our discussing two upcoming parties we’ve been invited that somewhat conflict, more like overlap, and as he grew more and more upset, I was both struck by how ridiculous his reaction was and by how poorly my every attempt to calm him down. There’s nothing worse than starting the day off with tears and confusion.

It’s one of those times when I’m reminded of how hard it must be for him not to be able to express himself adequately, and how hard it is for my husband and I to always guess correctly. There’s so much assuming when dealing with Cole and his communication. In the instance this morning, I think he must have misheard, or jumped to a conclusion in what he heard, which upset him, and from that point he was fully committed to his reaction.

Honestly, I cannot imagine not having the ability to talk. I talk to myself. I talk to Cole incessantly – a habit I developed when he was young. I talk. As a kid, my parents joked that if we went on a long road trip, they could literally just sit back and I’d talk continuously throughout the whole journey, however long it may have been, often without noticing that no one else was joining in. My brother would immediately fall asleep, and I rambled.

It pains me to know that more often than I’d like to think, we’re missing the real point of what Cole is feeling, wanting, or trying to communicate. It also saddens me that he cannot always communicate a question to clarify something, or that we cannot adequately suppose that there is a misunderstanding or confusion. Even with the support of his communication device, it can be difficult for him to clarify his understanding or needs.

And of course, I constantly wonder what’s going on that beautiful brain of his. His inability to verbalize or vocalize his thoughts has no bearing on the thoughts running through his head. If I could have a super power, it would be to read minds, more specifically, to read his mind.

 

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