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…




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.


November 4, 2015

I seem to reinvent my career every so often. It’s not so much a conscious decision to do so but circumstances in my life seem to find me in different roles periodically.

I started my working life as hairdresser, which quickly evolved into my teaching beauty school because my family owned a small chain of cosmetology schools. Besides teaching, I learned a lot about running the schools and managing as well. I even helped to develop and launch an inter-school hair show, complete with product vendors, demonstrations from industry leaders, and a student styling contest aptly named Style ’88. When my family sold the schools, I too left the business. I started cutting hair when I was in high school and by the time I was in my late twenties, I became burnt out.

Unsure of what I wanted to do next, I accepted a job opportunity from a family friend who’s law firm was overseeing an entertainment company and sort of fell into my next chapter. I started as the receptionist at a small international film distribution company and quickly moved to another company, assisting the president of sales. I was then given the opportunity to handle sales in some of the smaller international territories, and my career in international film distribution took off. An actual career was born. I traveled to places like Cannes, London, Milan, and Budapest on an annual basis for film markets and festivals and enjoyed studying the film culture in the various countries where I handled sales. It was an interesting career for quite a long time.

When Cole was born I was running the international division of a distribution and production company. I had not intended to become a stay at home mom but the circumstances of his birth, and the reality of his life, kept me home. We spent the early years doing every and any early intervention available. Besides the barrage of therapies, we went to an inclusive co-op infant toddler program, moving then to the inclusive pre-school. We did acupuncture, massage, and aquatic therapy. We started hippo therapy (equestrian, not hippopotamus). I spent seven years home with him, learning to be his mom, his advocate, his therapist, his caregiver.

Eventually, however, he didn’t need me in the same way. He embraced every ounce of independence he could find. He started staying in the aftercare program at school, taking enrichment classes, playing with friends, and doing homework. He wanted to stay at school until they threw him out. So I started consulting here and there at first and eventually found myself in a full time job in the same international distribution arena but now doing contracts and financing instead of sales. I was able to have some flexibility in my schedule and no travel. Perfect for my family life.

Many years and two merges later I’m still fortunate to be working doing contacts, financing and more. I like to joke that I’m a lawyer by day (sans the law degree of course). Most people who do what I do are in fact lawyers but there are a handful of us in this business that are laymen with a decent grasp of the legalese. It’s challenging and familiar at the same time. I work with a group of people I really enjoy, and I have some flexibility. I’m in a good place. But that restless feeling that I wrote about a couple of days ago is seeping into all aspects of my brain. What’s next for me?

The whole high school search trauma (also from previous post) has me seriously contemplating climbing up on a soap box to challenge local, state, and federal education boards and governments to do better for kids with disabilities.  We’re doing them great disservice.

I’m inspired by Malala’s stance. Cole and I are reading her biography and it’s hard not to draw some similarities in her fight for education for girls and the need for people to advocate for children with disabilities to have been educational opportunities. Her battle had dangers and implications with higher consequences but the idea that everyone, every child, deserves the right tot quality education holds true no matter who, where or what the child.

If only activism could draw a salary…

June 17, 2015

Cole’s surgery is tomorrow. We’re all frayed and fragile but doing our best to be positive and to keep Cole from seeing our nerves peeking out. I do know that it’s all going to be fine. He’s done it before, has a great surgeon, will be in a great hospital, and we’re more prepared for recovery this time around, having a better idea of what to expect, need, and how to care for him in the massive spica casts. And I know time goes quickly so it will soon be a distant memory.

We’ve had such an outpouring of love and support for him and us as we get closer to tomorrow. It led me to come up with a fun campaign that I hope anyone who reads my blog will join in on. I’m asking people to send postcards, letters, lists of favorite songs, movies, a favorite picture or art, poems, whatever you like, to Cole during his summer of recovery. If you include a return address he will write you back. Cole loves receiving letters and mail and is also a very avid letter writer himself. He’s a lo-fi correspondence kind of guy. He adores mail and mailing.

It’s a positive activity and will be so fun to see what kind of treasures he receives. I’ve promised to help him collect some fun papers and stickers and trinkets for his own sends. Stamps have been ordered! It’s okay if you don’t know us personally. If you’re reading my blog, you have insight to our family already and this fun project will bring us all slightly closer.

I’m planning to save all of the mailings in a scrapbook for Cole so he can share it with friends and revisit the letters, etc. when this is over. It will help create some positive, special memories of his “bummer summer”. So I implore you, grab a pen, paper (postcard, whatever) and a stamp and send Cole some joy! I promise if you include your return address, you’ll receive some back! xoxo

Cole Griffiths
14540 Hesby Street
Sherman Oaks, CA  91403

May 26, 2015

Back to work following a lovely holiday weekend.   Starting the week on Tuesday often feels harder than on a usual Monday. Having the one extra day of a holiday weekend is just enough to sink one into total relaxation, making the Tuesday start of the week a wee bit jarring.

For half the weekend we were three and the other half just Cole and I. Saturday night we had a delightful date night with a dear friend at a local café doing their first ever “Paella Night”. Seated outside under the glow of the local business signage eating a delicious Spanish meal with yummy vino and great laughter filled conversation. Nothing better.

Sunday Cole just wanted to lounge about in his p.j.’s until close to lunch time. Then we headed off to the last baseball game of his fall season with his friend Charlotte in tow. The game was festive and fun, and Cole and his pal Joshua had quite a cheering section between family and friends, and even a few of the school para-professionals all there to support them. Cole and Char then hung out together for dinner and watched Pitch Perfect to prepare themselves for seeing Pitch Perfect 2 on Monday.

Monday we lazily got ourselves ready for a late morning screening of Pitch Perfect 2. We met up with a few (okay, fifteen or so) friends for movie and lunch and got ourselves home just before four pm. Long fun day with a gaggle of our favorite people.   Leaving us with just a bit of Monday left to have dinner, bath, neglect homework, and snuggle off to bed. Not a bad way to end a weekend.

So now I’m at work and our server is down so I’m unable to actually do any real work. Frightening how lost we are without our internet and server! My goal this week is to regain some consistency with my writing. Turns out it’s like exercise for me. If I get started and stay consistent I’m successful but fall off the routine for more than a couple of days and it’s all over. I really have to work on that with both writing and exercise!

Happy Tuesday…

May 18, 2015

A continued frustration in our family is Cole’s unwillingness to step up his communication at home. He’s frequently moody and unhappy about his choices at home either during the early evening hours after school or on weekends when we’re trying to balance getting errands run, taking care of little home projects, homework, and fun. He’s often whiny and angry and rarely willing to take the time to try to communicate exactly what it is that is bothering him.

I understand that running to the grocery store and Target to stock up for the coming week is not the ideal way to spend weekend time for a thirteen year old boy. I do. I also understand that hanging out with your parents may not be the end all be all either. However, whining, teeth grinding, and angry grunts are no picnic either. The fact of the matter is that we’re frequently bound together on the weekends even for the fun activities and when one of us is non-communicative weekends often become unpleasant.

The frustration for Dan and I is that Cole has means to communicate, beyond his ability to convey things without words, he has his Tobii (eye gaze voice output device). Of course, he refuses to use Tobii at home. I don’t know if, by the weekend, he’s just cooked from the effort output all week at school, or if he’s just stubborn. Well, he is stubborn, but I’m not sure about in this circumstance. The trouble is during the weekends, he also boycotts answering questions even those requiring a simple yes or no, two words he’s mastered.

His refusal to communicate makes all of our home time more stressful and anything but relaxing. It makes everything we attempt to do somewhat unpleasant. Even when we successfully do something fun or accomplish an errand without this behavior, it reappears as soon as we leave something and head home. It’s like he hates home, except I know that’s not the reality. I understand he’s sometimes sad that something is over, but it doesn’t warrant the behavior. We try so hard to illicit answers and to try to make things all right, but lately it rarely seems to work.

Nothing is more heartbreaking than seeing your child unhappy, and nothing is more frustrating than seeing that he’s not willing to help himself. His stubbornness and misery get in his way and he just can’t seem to shake it. I don’t know if it’s a teen topsy turvy mood thing or if it’s more endemic than that. I wish he would let us in on the secret. I wish he would trust that if he tried to communicate with us we’d listen.

May 4, 2015

I had a realization this past weekend that I’m not entirely proud of but so relieved that I had it. One of those reflective moments where you suddenly realize “Oh, wow”…

My husband was traveling a few days this past week and I handled the driving Cole to and from school duties. I was lamenting the morning drop off because my observation of them was that (besides Cole being terribly embarrassed to have his mom bring him into school – typical teenager!), most of the kids just sort of ignored him as we pass by or settle near his classroom waiting for his para-professional to arrive and take over. It’s like they just don’t see him.

So I was discussing this with some friends over the weekend, expressing that it really saddened me when I realized that Cole sort of ignores everyone else too. He’s not engaging them in conversation or saying “Hi” to any of them despite having the ability to do so with his Tobii. He has a voice that he often neglects to use and conversation is not something that he needs to be dependent upon others to start. In fact, it should be something he’s doing more often. He needs to be engaging his friends with interest and query. It’s not their responsibility to always come to him and ask him questions without reciprocation.

As much as I hate to admit it, but it’s so easy to see your child as the one left out because they’re different, and admittedly it does make it harder for others to engage with him, but the reality is he also has to show he’s open to conversation and interested in others as well. It’s not something we’ve fostered or a skill he’s strongly developed because, cringe, we were focused on why others weren’t engaging him. I’m grateful that light blub turned on and that it’s now something that Cole can work on developing stronger conversational skills and understanding.

I feel like by him initiating conversation or simply greeting friends and teachers when he sees them as opposed to silently rolling by, he will open himself up to more positive and intention interactions with people, and will deepen friendships by actively showing greater interest in his friends. He can’t be reliant on them to be the sole conversant. The reciprocal conversation is so much more satisfying for everyone.

I need to be turning that mirror on my boy and myself a little more often…