With so many sad and negative news events lately, I wanted to post something that will absolutely make you smile. This piece ran on ESPN SportsCenter throughout the day last Sunday and it is truly an amazing story about an amazing dog helping some amazing kids surf. It’s a few minutes long but well worth the view – I promise you’ll be grinning at the end.
In my last post, I wrote about the bittersweet moments that come with parenting a child with Autism. And as I usually try to do, I focused on an positive aspect – the great joy that comes from a developmental step – even a minor one.
Tragically, today there are two families who will be unable to celebrate these milestones with their autistic children because those precious children are no longer with us. Mikaela Lynch and Owen Elliot Black succumbed to the biggest danger (and killer) of children with autism – they wandered from their families and were discovered in water, most likely drowned. Both were on vacation. Both vanished in a matter of minutes, their families discovered their absence within minutes and frantically searched for them, enlisting emergency responders immediately. Even though hundreds of volunteers turned out to help search for each child, they were unable to prevent their deaths.
Those who may not be as aware of autism may not understand why this is such a big issue and problem – they may instead try to blame the parents for not being
attentive enough to keep track of the children and “allowing” them to wander. As a parent of an autistic son I can tell you it is impossible to keep an eye on your child 100% of the time – even if try (unless you elect to keep them locked up in a room or house – which is no life for any child). All it takes is a moment or minute for the child to discover an open door or gate – and they are gone.
What makes searching for and finding autistic children an even bigger challenge is the fact that most are non-verbal and socially challenged at some level. They are unable to yell for help. Instead of seeking aid from strangers or officials, they may instead try to avoid them and hide.
Luckily for us, Stone has never been much of a wanderer but there have been times when he has gotten outside and the caregivers were unaware. When he was younger he removed the screen from our living room window and climbed outside during the summer – the babysitters had no idea until they noticed the screen was missing. Fortunately Stone was playing happily in our front yard – but this could have easily turned into a horrible disaster.
Within the autism community, wandering is recognized as a huge issue and danger and groups are mobilization to address it by providing resources to both families and first responders.
The National Autism Association has created a “Big Red Safety Box” that includes the following:
1) Get REDy booklet containing the following educational materials and tools:
- A caregiver checklist
- A Family Wandering Emergency Plan
- A first-responder profile form
- A wandering-prevention brochure
- A sample IEP Letter
2) Two (2) Door/Window Alarms with batteries
3) One (1) RoadID Personalized, Engraved Shoe ID Tag*
4) Five (5) Laminated Adhesive Stop Sign Visual Prompts for doors and windows
5) Two (2) Safety Alert Window Clings for car or home windows
6) One (1) Red Safety Alert Wristband
These kits cost $35 and the association is actively seeking foundations and others who can donate so that families who can’t afford these kits can have them provided.
There is also the Awaare Collaboration, which is committed to working to prevent wandering incidents and deaths within the autism community. Their website provides additional information about autism and wandering, a helpful FAQ and additional resources available for families and first responders.
Today I join more than 30 bloggers in honoring the all-too-brief lives of Mikaela and Owen. Words simply cannot express the sadness and pain I feel whenever I learn of a wandering incident with such tragic endings. I know there are no words that can bring comfort to these families – only a collective group hug and support knowing what a huge loss they are feeling in their lives.
My hope is that as has been the case in other times and situations when we’ve faced major issues that endangered the lives of children, we can continue to work together as a community and prevent any additional loss of precious lives.
A few weeks ago Ty asked me what “bittersweet” meant. He had been taken in by “Bittersweet Symphony” by The Verve after hearing it a few times and wanted to know the definition of the word. I tried to explain that it’s when you experience something that could be both good and not-so-good at the same time.
I can tell you that being a parent of twin boys – especially when one is on the Autism spectrum – is often full of bittersweet moments.
Last week Ty and Stone’s school held a spring concert for first and second graders. He was very excited for the occasion as he and his class had been practicing extensively leading up to the show. We arrived as a family in the auditorium and it as buzzing with excitement, anticipation and of course, much chaos ahead of time. We saw Stone’s special ed teacher and she offered to take Stone to the stage with the other first graders and help him stay in place if we wanted. It was only then that Renee and I both remembered and realized again that Stone was every bit the first grader as the others and should be participating in the concert if it wasn’t for his speech delay. We graciously decline and said that Stone would sit with us during the show. He did sit with us and behaved quite well considering it was 30 minutes of children singing.
But it was during the concert when those bittersweet feelings washed over me again. As I watched Ty up on stage performing and having a blast I also looked down at Stone next to us and wondered what he must be thinking and wondering not being up there. He knows all of the kids who were performing – he sees them everyday (even if he doesn’t interact or socialize with them). It was a moment when I desperately wanted everything to be “normal” for us – even if it was just for that occasion. I would give anything to see the twins singing and performing together.
Fast forward to tonight. Renee had a work engagement that went late into the evening so I had the twins to myself. I had promised Ty I’d take him ice skating because Wednesday nights are open skate nights and a good chance for him to skate for fun (usually other kids from his hockey league are there as well). What usually happens is that Ty will skate while Stone and I hang out and wait for him – Stone usually with his iPad as entertainment.
But tonight Stone showed a real interest in going out on the ice. He kept trying to sneak onto the ice wearing his shoes so I told him if he wanted to go out there he had to wear ice skates just like everyone else. I had tried to take Stone ice skating one time before more than two years ago and it was an absolute nightmare. At that time Stone was extremely sensitive to any kind of new shoes (or clothing) so as soon as I even tried to put on the ice skates he was screaming and crying. Frustrated and embarassed I eventually forced the skates on and tried to get him on the ice – but he continued screaming and crying. Like I said – it was a disaster and left me leery of trying for a long time.
Tonight though, Stone seemed ready. I asked him if he wanted ice skates and he repeated “ice skate.” I took him to the skating rental counter and showed him the skates and he reached out to grab some – it was clear he understood the task at hand. So I paid for a pair of rental skates and went about putting on the skates again – unsure how he’d react and respond given the previous experience. He was actually smiling and excited! Even though I could tell it felt different and weird for him, he didn’t resist at all and willingly walked with me to the ice. The fact that he was able to wear the ice skates and was comfortable enough to just practice walking around was a huge victory for me. I led him to the entrance to the rink and encouraged him to try the ice.
He was a little too nervous and scared to do too much – but he would occasionally
stick a foot or two out on the ice and then quickly pull them back. But he was laughing and smiling the whole time – he was obviously having fun with the new experience and enjoyed watching all the other skaters whizz by. I experimented with him for about 20 minutes before calling it a night and heading home again but the experience absolutely made my week. I was again reminded of how important progress is in development – any kind of progress! And with this experience I am totally confident that we’ll eventually be able to get Stone out on the ice and skating like his brother.
Tonight was very much a sweet experience – nothing bitter about it at all.
Interesting article about the potential of “humanoid” robots helping kids with Autism better develop social skills. The study was small (only 19 kids) and in a very controlled environment, but this could turn out to be another new tool for therapists.
Small study found they tended to do better at developing social skills when this ‘co-therapist’ was used Source: HealthDay Related MedlinePlus Page: Autism…
As Autism Awareness Month winds down, I thought that this is a very timely topic to review and discuss. Given that we now live in an age where 1 in 50 children are being diagnosed on the Autism Spectrum and there is greater integration and awareness in schools and other mainstream activies, questions are bound to be asked. Here is a good resource for parents:
If your child stares, points or asks indiscreetly, “What’s wrong with that kid?” don’t feel ashamed. April is Autism Awareness Month so instead of shrinking with embarrassment, take advantage of that teachable moment and turn awkward exchanges into awareness-raising opportunities for our youngest generation. What’s wrong with her? If your child stares, points or asks indiscreetly, “What’s wrong with that kid?” don’t feel ashamed. April is Autism Awareness Month so…
It seems there are new Autism-related apps being announced or released on a weekly basis, so it’s hard for parents to stay on top of all of the options. Here is one list of 10 top iPad Autism Apps that is worth checking out.
According to the most recent research by the CDC, 1 in every 50 school-aged children has been identified has having autism or a related disorder–defined as an impairment in social interaction and com…
I’ve blogged a bit before about my Visionquest bike adventure in 1992. At that time I quit my job as an Account Executive at the fast-growing and highly-successful Waggener Edstrom public relations firm to travel solo throughout Europe on my bike. You can read more about some of the adventures in other posts, but here I wanted to continue my new “5 Key Lessons Learned…” series and share some words of wisdom from that experience.
1) People are good everywhere
Yes, this should be obvious but I really don’t think most people realize this until they have the opportunity to leave their comfort zone and explore other countries and cultures. On my bike trip I had strangers provide me with a free BBQ steak and wine dinner in Paris, repair my bicycle in Belgium, talk me out of having to pay for an extra train ticket in Germany and countless many other acts of goodwill. I was surprised time and again by the goodness in people, no matter where I was in Europe. And yes, not all people are good – I also had my share of attempted pickpockets and other potentially unpleasant experiences but the GOOD far outweighed the bad. Sometimes in our crazy world its hard to remember this when it seems so much focus and attention is given to the bad eggs.
2) There is no “best” country, culture or society
I readily admit that growing up in suburban California during the 1970s and 80s, I was incredibly ignorant and naive about the rest of the world. I readily bought into the “USA is #1″ propaganda without giving it any real critical thought. But what I learned through my travels was how happy so many people were in so many other countries living their own unique lifestyles. I learned that happiness can be found everywhere and so much of that depends on the people – not on materialistic possessions or political leanings. This gave me a new appreciation for our diverse world and helped me better understand the importance of preserving culture.
3) Pushing yourself to new limits creates incredible confidence
Cycling nearly 3,000 miles in 3 months alone was a physical and emotional challenge unlike any I had faced before in my life. There were many grueling days of cycling and plenty of road bumps (literally and figuratively) throughout the journey. While I only (amazingly) had one flat tire, I did have to contend with other repairs such as replacing a gear box and replacing broken spokes. I also had to cycle over a mountain range (or two), push myself through 100 mile/90 degree days and navigate foreign road systems – all while trying to figure out where I was going to sleep and eat on many nights. When I returned from my journey, my confidence was through the roof. There wasn’t a goal or challenge I couldn’t imagine tackling – hell, I just got back from this incredible Visionquest! Anything is possible.
4) Sometimes its good to be alone – but you still need others
Spending up to 8-10 hours a day cycling alone on many days provided me with a new and unique situation in my life: time to think, observe and live as one. Having that much alone time forces you to think about things you ordinarily don’t consider (or try) to explore. And as I said above, being alone like that also forces you to become incredibly independent and self-sufficient. I knew and realized I was blessed to have such a strong support system growing up – but I needed this challenge to prove to myself what I could do alone. But having said all this, I also realized how important it is to have others in your life – even if its just to have someone to talk to, explore a museum with or help you find a hostel. While we’re all capable of doing great things alone, I do believe they’re impossible to truly fulfill without having assistance from others.
5) Making a dream a reality doesn’t mean it’ll all be good
Let’s face it, even our best dreams aren’t ALL good, right? What I mean by this last point is that I learned that its so important to have dreams and goals in life – this is what we use to motivate ourselves to live life to its fullest. But I think it’s easy (or maybe simply naive) to assume that just because you’re making your dream a reality – that all will go well. On my bike I was literally living the dream. But this meant I also had to deal with every day realities and setbacks along the way (such as bike repairs, figuring out where to eat, etc.). When you’re busy creating your dreams, you don’t think about the negatives that come along with them – and I think that’s OK. But it’s also good to keep it all in perspective.
Its stil Autism Awareness Month so I’m doing my part to share new and interesting information for those who are impacted by Autism. Whether your journey is just beginning or you’re a veteran, it seems there is always something new to learn about Autism.
In a couple of years, we will learn something new that changes everything all over again. But what we know right now could change a child’s life…
At some point in life, you come to realize you’ve had a lot of interesting experiences that have helped influence and shape you to become the person you are today. I’ve been fortunate in that I’ve had a wide variety of experiences in my life – and all have helped teach me valuable lessons (some more than others of course).
And so, I’ve decided I’m going to start a new series on my blog titled “What I learned from…” I hope that some of the lessons I’ve learned will also be interesting and helpful to others. The first post in the series focuses on what I learned from working with John Chambers, Cisco Systems CEO.
I was hired as communications manager for John during the summer of 1998. The Dot Com Boom was in full force during those days and the company most capitalizing on the exploding growth of the Internet was Cisco Systems. In those days, Cisco was the darling of Wall Street (with its stock splitting multiple times per year) and John was one of the biggest stars in the industry. Joining the executive communications team for a high-flying corporation was a huge change for me after selling my shares in a 25 person PR/IR firm I helped found and build over the previous 5 years.
John had an incredibly busy and ambitious schedule as CEO – and it included a ton of speaking opportunities. On an average month, he gave between 20-25 presentations internally and externally. As communications manager, one of my roles was to review and respond to speaking engagement inquiries. There were a LOT of inquiries and requests arriving daily and naturally, we had to turn down probably 99 out of 100 requests due to his already packed schedule (not to mention wanting to keep him focused on speaking engagements that were the right fit).
Lesson #1 – Learn how to say “no” graciously and in a way that makes the other person feel good.
Lesson #2 – Take the time to respond to *everybody* and don’t play favorites.
John was exceedingly polite and professional – and he wanted to make sure his staff and communication reflected this approach as well. So it was clear that even though we had to turn down so many requests, there would be no canned response from our office and each response had to include a “thank you for the invitation” as well as reason why he would unfortunately have to decline it.
I was amazed at the level of appreciation displayed by those who we had to turn down. On numerous occasions we received “thank you” emails back – simply for answering (many said that similar requests to other companies/CEOs were simply ignored).
Lesson #3 – Treat everyone with respect and show your genuine appreciation
As I noted, John had an incredibly busy and tight schedule. We were often running from one conference presentation to the airport for an important flight (or another meeting). But no matter how late we may have been running, John *always* made sure to stop behind the stage to thank the production crew for their help. He made it a priority to make sure that everyone he worked with knew he appreciated the hard work that went into the presentations. How many Fortune 500 CEOs do the same?
Lesson #4 – Don’t be afraid to laugh – even at yourself
One of John’s best qualities has always been his ability to connect with others – whether its a small team or a large keynote audience. While I know there are those who have wondered whether his “folksy/friendly” persona was just an act, I can tell you it was not. And even better, John was willing to use humor in situations when others may panic or falter. Let me explain.
Our corporate PR team landed a huge opportunity for the company and John when 20/20 agreed to feature John in a segment that would eventually be called “The best boss in the country.” Arrangements were made for the ABC crew to arrive in San Jose to tape a series of interviews and follow John around showcasing “a day in the life of a CEO.” When the day arrived when the crew was going to be in town taping John’s presentations to employees, he was mortified to discover he had laryngitis (too many speaking opportunities had strained his voice). He and I were driving from San Francisco down to the Cisco Systems campus and he was understandably worried about how it would look and sound. The way his voice cracked as we talked reminded me of one thing: Peter Brady in the famous Brady Bunch episode. So I asked John, “Why don’t you just joke that you’re going through puberty again?”
Sure enough, when it was time to give his presentation in front of employees, he struggled with his voice but he used the line…and the entire room burst out with laughter (and it also made the 20/20 piece).
How many CEOs would be confident enough to say something like that in front of employees (or a national TV audience)?
Lesson #5 – Be careful what you promise
Cisco Systems was going through incredible employee growth during the late 1990s and into the early 2000s. When I joined in 1998 there were approximately 14,000 employees. That number had ballooned to nearly 40,000 by 2001. The company was hiring about 2,000 employees per month and was acquiring nearly 10 companies per year and assimilating those employees as well. One of the questions often asked of John during those days was “is Cisco growing too fast? Can it sustain all of these new employees?”
Before joining Cisco Systems, John had built his career at IBM and previously worked at Wang Laboratories. Both of these companies experienced huge layoffs while John worked there – and he recounted time after time how these were the most painful points in his career. And he would do everything possible to make sure this wouldn’t happen at Cisco Systems under his watch.
In April 2001, the Dot Com boom was starting to bust (along with the Internet bubble) and it caught up to Cisco Systems quickly. A company that was hiring 2,000 workers monthly in late 2000 suddenly decided to lay off 18% (8,000) employees. Many employees (and shareholders) felt betrayed – because they had been “promised” by John that this wouldn’t happen to the company with his leadership.
I was one of those employees who was laid off but I certainly didn’t feel betrayed or hold any negative feelings towards John (or Cisco Systems). By that time I had moved on to the corporate marketing group and was part of the fledgling sponsorship team – which included sponsorship investments in golf tournaments in Japan and the UK (among others). These could hardly be called “mission critical” company activities so I understood why this function had to be cut. I was also completing my Masters degree in Sports Administration from the University of San Francisco (thanks in huge part to Cisco’s generous tuition reimbursement program). So I was happy that I would (seemingly) be able to pursue a new career in the world of sports marketing. I wasn’t out of work long as I was hired as Director of Marketing and Promotions for the University of California Athletic Department in August. My tenure at Cal will make up another future segment of “What I learned from…” series.
There were many things I learned while working with John Chambers and at a fast-growing corporation – far more than can fit into a single blog post. But the lessons outlined here are truly the most memorable and meaningful takeaways from that unique chapter in my professional life.
Even though Stone and I have always had a very strong bond and connection, it’s been a challenge finding activities that we could truly share together. But a recent development has opened a new opportunity for us to do just that.
A few months ago I noticed Stone started messing around a bit on the “Razor” scooter that we bought for the twins a couple of years ago. While Ty had mastered riding the Razor a long time ago, Stone never really showed interest in it until only recently. It started with him trying to balance himself on it as he watched his iPad in the garage and gradually it grew to the point where he was coasting on it a few feet at a time. We even reached a point where we had to ban the Razor from the house because Stone was bringing it in so frequently (and scratching the wood floors with his play).
But I had no idea just how much he had improved riding the scooter until about a month ago when we were in our front yard enjoying one of our first pleasant spring days. Stone brought out the Razor and amazed me by riding down our street a good 15-20 yards before jumping off to stop (he hadn’t figured out how to use the foot break yet). He wanted to go across our street to another dead end street that had a nice hill (and much better pavement). Again he surprised me by how well he was able to ride the Razor and maintain his balance for a long time. I could tell he was very proud of himself and enjoyed showing off for me – this is something he totally taught himself how to do and he could do it well. Of course, my next major task and challenge was enforcing our helmet rule (which didn’t thrill him) but he eventually gave in and accepted wearing the helmet when he was with me and his Razor.
Now that Stone had mastered the Razor, I thought it would be fun to go exploring with him (much as I did initially with Ty when he first learned how to ride his bike). So Stone and I have now started a new tradition where he and I (sometimes joined by Brodie, Ty or the both of them) go out exploring our neighborhood – he on his Razor (and me running behind trying to keep up!). It’s been a lot of fun because I let Stone decide which direction he wants to go. And just as I did with Ty when he was learning to ride his bike with me on our runs, I have to constantly remind Stone to stay to the side of the street, to look out for cars in the driveway and about a hundred other things I worry about while out with him. There was even an incident where he ran into a pothole that he didn’t see and slightly flipped and fell on his side – getting a small scrape. He wasn’t too hurt (or upset) fortunately – and strangely I actually felt good about the experience. Because this is exactly what I want for him (and Ty alike). I want him to experience childhood as a boy – being out and about (and sometimes getting bumps, bruises and scrapes). These are the experiences I know will help him develop even more – while gaining confidence in the process.
Our last adventure together happened last Sunday when we again went out exploring Edmonds. We ended up traveling more than 2 miles together and winding up at Edmonds City Park (where I promptly called Renee to ask for a ride home). I’m so proud of Stone taking the initiative to learn how to ride the Razor on his own and know he’s that much closer to riding a bike without training wheels or maybe even a skateboard in the not-too-distant future.