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…

 

 

 

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.

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…

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.

LIAR
August 11, 2016

Reality bites…

We attended the freshman orientation with Cole this morning at his new high school. He starts school next Tuesday at a new school where inclusion means something entirely different than what we’ve experienced for the past fourteen years.

The school, and LAUSD, our school district, both seemed opened to having Cole attend this school, and touted the potential for him to do some of his classes in general education and some under the wing of special education. We worked it out as such in his IEP, painstakingly ensuring that he’d have plenty of opportunity to spend time with typical peers, as well as benefitting from the support needed for some subjects in special day class.

His schedule was hand delivered by one of his special ed teachers. First period – Jazz Ensemble. Um…What? That is supposed to be his elective, one of the courses he’d take in general setting. First off, he doesn’t play any instruments, nor is he physically capable of doing so. Secondly, Jazz Ensemble?

Apparently all of the other electives were full. That’s the explanation we received.

And it got worse from there. Jazz Ensemble is the only class he has in general education. Everything else in his day is in the special ed classroom. Again, what? This is not what was agreed upon and spelled out in his IEP. To this we received a “We’re not like CHIME. We can’t support him in class”.

Apparently the IEP means nothing.

He’s supposed to have a one to one support throughout the entire day. Someone who can tend to his personal needs, support his access to the curriculum and to the classroom, facilitate his social goals, and enable him to thrive in the school setting. Thus far, they haven’t hired, or found, this support person. We’re told they’ll be there Tuesday morning, ready to go.

Apparently without any training or understanding of Cole at all.

I knew high school was going to be different and that leaving CHIME would mean some changes in terms of the kind of support Cole would receive, but there seems to be little interest in ensuring that he receives the same kind of high school education and experience that his typical peers will have access to.

When they say no child left behind, they lie.

 

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!

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

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CRUEL TO BE KIND
January 11, 2016

I had a bit of a revelation this past weekend. Perhaps somewhat overdue revelation but I had it (finally) and it’s put me to shame.

A discussion about something Cole related with my husband turned, as it often does, into an argument. I took my frustration out on him and got nasty. It’s my M.O. – not one I’m proud of but it happens a lot when we get into these emotional conversations. I think a lot of people do the same, and it is a learned style of fight that got passed on to my by my mom and brother. Hurt the ones you love.

The revelation I came to, is that my frustration when discussing difficult things in my life, is that we’re discussing difficult things in both of our lives. Shared frustrations, concerns, fears, anxiety, and stresses. When I talked to friends about these things, I have an outside opinion to bounce things off and to bring in different views. When I discuss things with my husband, the frustration is that we’re both in a similar place and it doesn’t help to remove me from where I’m stuck.

I’m not sure if I’m expressing that properly but in my head it makes sense and it struck me that it’s the root of some of the anger I direct at him. He can help me resolve some things because he’s looking for the same resolution, and I can’t necessarily help him. Sometimes you need a trusted or knowledgeable outsider to provide perspective and insight.

While I know that my fighting style is cruel, and not appropriate, especially when aimed at my partner, someone I love, this recognition I had gave me cause to reflect on my misguided anger in a way that I haven’t before. It gave me a deeper awareness of my failing. When I’m hurt, worried, concerned, or even appropriately angry, it’s not useful or helpful to deflect it upon someone else, especially someone who is often sharing the same emotions and therefore doesn’t need the additional burden of my wrath.

We’re going to fight still, everyone does, but I’m really going to make a bigger effort to stop to better understand the whole of a situation and what might really help to resolve it before I lash out.

Maturing can be a real bitch sometimes, especially when the mirror reflection is of someone were not proud to see…

IF MUSIC COULD TALK
January 6, 2016

I realized today that I haven’t provided the songs and artists that title my blog entries for quite a long while. I thought I’d use this rainy gloomy day as my chance to get you caught up with the songs and tomorrow with a new playlist for Cole for January.

Music plays a huge part in our lives. It was always in my house growing up and my dad used to take me to see live music, heavy on the jazz. I discovered punk rock in the late ‘70’s, which influenced my youth in a big way. While I like all kinds of music and as a teen, young adult, went through phases where in addition to the punk rock, I’d listen to Patsy Cline or the ‘60’s girl groups incessantly.

My husband too grew up around a lot of music. He played in bands, sang with a somewhat tongue in cheek quartet and spent much of his formative years seeing bands in clubs in the Baltimore/DC area.

Music has been in Cole’s life from the start. We sang to my growing belly, and broke out every Beatles and Elvis Costello song we could remember once he was born, singing to him in the NICU while he was healing and recovering those first tenuous frightful weeks after his birth. He’s been exposed to everything we love, and shot down most of it, opting for discovering his own favorites. Our influence doesn’t really interest him but he does love music and is interested in exploring which is why I started creating monthly playlists for him.

When I started blogging last year, I decided to try to title each blog with a song title that somehow, in my mind, related to the blog topic. Following are the titles with the song artists for the past couple of months, including today’s:

If Music Could Talk – The Clash
Girl, Afraid – The Smiths
Innocent – Taylor Swift
Christmas Present – Andy Williams
Smile – Lily Allen
Thank you – Sly & The Family Stone
Magical Mystery Tour – The Beatles
I Am The DJ (Series 11) – David Bowie
Say It Isn’t So – Hall & Oates
Ball of Confusion – Love & Rockets
Frustration – Soft Cell
That Old Feeling – Frank Sinatra
All Together Now – The Beatles
Run The World – Beyonce
Love & Happiness – Al Green
Sweet Dreams – Eurythmics
Baby Elephant Walk – Henry Mancini
Reinvention – Superchick
I Hate My School – Redd Kross
Phenomenal Cat – The Kinks
Restless – The Bangles

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GIRL AFRAID
January 5, 2016

The New Year always brings thoughts of improvement, change, and resolve. It always seems like the time to devote oneself to overhauling ourselves, our finances, our jobs, our lives, and despite my reeling against making resolutions, I do find myself in that same contemplative mindset.

The big ah ha for me is that I am my own worst enemy. I seem to get in the way of my own success or interest far more often than I don’t. A big part of my problem is that I have become a creature of comfort. Where I once barreled into things head on, I now research, create excuses, and find myself sitting resolutely where I am comfortable.

Comfort however should not be construed as content or satisfied. It’s simply a place where I know what is expected, or how to do maneuver, or how to behave. Some of this comes naturally with age and some of it comes from trying to maintain some sort of control in a life where I often have very little and some of it comes from fear.

Fear can be debilitating. I don’t think I’m that extreme but I do have a level of fear of the unknown that frequently keeps me from reaching a perceived goal or intention, or from trying new things.

I really started thinking quite a lot about this as we began contemplating our annual family trip to Mammoth so Cole and Dan can ski. We’ve been doing this for several years now with three or four other families in tow.   I learned to ski when I was nine and skied often until I was in my early 20’s. I was actually pretty good and really loved the sport.

I haven’t skied on any of the recent trips. The first year my excuse was that I needed to be available for Cole, who skis with an amazing adaptive program, Eastern Sierra Disabled Sports, in case he wanted to stop or needed anything. The next year, I got it in my head that I would fall and hurt myself and it was all over.

This year, I’m skiing. So what if I fall. I’ve fallen lots of times in the past and I know how to fall and to get up. I’m not that fragile and I want to have fun skiing with my husband and friends.

I do the same sort of thing to myself concerning my weight. I know how to be the fat girl. I know how to be the curvy one. I know how to handle myself with extra padding. When I start to lose weight and am working towards becoming fitter, stronger, and yes, thinner, I sabotage myself. The minute it becomes noticeable, I feel less confident with the attention and begin the slow decline of success. I’m not good at envisioning myself at my goal where I will likely be less comfortable, even if I’m healthier and smaller.

This past year or more I’ve actually managed to keep weight off despite my best efforts to thwart myself.   I’m intending to rejuvenate the efforts to improve my health and to lose weight, to lose baggage. The reality is that there is more to fear in staying where I am, as I am, in terms of longevity. It’s time to learn how to deal with my own discomfort and my own pathos so that I can become a support to myself, not a hindrance.

I’ll save some of the other fears for another time. I know I’m not alone in this pathos and I know it’s a challenge to get out of my own way, but I face challenges all of the time as Cole’s mom and I don’t view them the same way I view my own. I would move heaven and earth to make every day of his life better, easier, more fulfilled. I just need to try to give myself the same care and attention. The better off I am, the better able I am to rise to his needs.

Here’s to a New Year! One filled with first steps, second steps, and new steps.