Robots to the Rescue?

We have a roomba that vacums the house everyday. Our dog hates it, but I love that it gets up the dog hair and lots of other dirt that I don't need to worry about. Very user friendly and a great addition to the family. Who doesn't love a robot?

 My husband told me recently about a place in California that's researching robots for people with physical disabilities. They seems to have a lot of glitches to work out, but isn't it great that smarter folks than I are exploring this and trying to identify ways for us to apply the technology in the important area of daily life skills?

 I also saw where a young man was unable to attend school due to medical issues, so a robot went in his place and then "televised" what he was missing back to him at home. Another great concept to help him stay connected educationally and socially.

 If you have a big idea of how to create something that will help people with disabilities, share it for World CP Day starting September 4 and it may become a reality. United Cerebral Palsy and other leading global partners have joined forces to promote new ideas and get them to market faster. Kudos to them for thinking outside the box.

Let's all try it a little more often!

What's Good for Business and For People

Watch Disabled Workers Still Struggle More with Unemployment on PBS. See more from PBS NewsHour.

Unemployment among disabled persons in the U.S. is now at 67%. This means too many qualified people who could be working aren't, and we're all losing because of it. As companies like Walgreens, Proctor & Gamble and Lowe's all know well, hiring qualified people with disabilities to work in competitive jobs is good for business. Now Senator Tom Harkin and a group called the U.S. Business Leadership Network are calling on business leaders nationwide to step up and help change this reality. As Harkin eloquently states, "Work is a part of life. It gives you fulfillment. It gives you the independence, the economic self-sufficiency to have a more full life. No one wants to be shunted aside and sit and watch TV all day. People want to work. They want to be a part of the American experience. They want to contribute to society." I couldn't agree more. Now, what can we do about it? First, people with disabilities need to be trained effectively, starting in their teenage years. Just as we encourage typical youth to explore internships and "try out" different jobs to explore their interests and abilities, so should we be working as school districts, not-for-profit agencies and within our communities to create partnerships between youth with disabilities and potential places of employment. Secondly, as Senator Harkin urges us, we should adjust our attitudes about employment so that we see people's abilities and how they might contribute in a business environment, rather than simply first focusing on their disabilities and challenges. Lastly, we can make modifications and adaptations to some work place settings to accommodate people with disabilities -- small changes that could produce big benefits for both employer and employee long term. As the parent of a 16-year-old who talks constantly about his future career aspirations and life goals, it's important to me that our communities and society as a whole sees this challenge for what it is and seeks to improve the current situation. Our expectations of ourselves and the disabled people in our lives should be high. This may require creativity and a fresh perspective. Neither costs much and could really reap amazing rewards.

More TSA News

It looks like we have a fan in Chuck Schumer. He's introducing new legislation to assist travelers with disabilities in most major US airports. Give him a set of wings, please!

Turn up the music!

I always knew music was good for us, but this is amazing. Heard about Tod and Dan from the 2008 TED Conference. It seems they and Hyperscore are just the tip of the music/technology iceberg.

For our son, Andrew, music has become a passion that will, I'm sure, sustain and entertain him throughout his life. He continues to develop very personal relationships with many compositions and even experimented with a Digital Music Class last semester in 10th grade. Like Tod Mochover maintains, Andrew experiences music differently and is literally moved to tears by Beethoven's 9th Symphony and several others. Learning how to express himself more through music is a skill that continues to bring him much joy. And it's clearly therapeutic for so many good reasons.

Isn't it wonderful that music can be so helpful to so many? And seriously, shouldn't insurance be available to help offset the cost for music therapy and other attempts to optimize this technology for people with disabilities or conditions like Alzheimers?

Perhaps it's time to explore this stuff some more on your computer, or look for a music therapy class where you live (for your child, your parents, yourself?). Better yet, just turn up the radio, your Spotify or Pandora. I may actually try to learn Garage Band, myself. Who knows what might happen?!

Creating Connections

Our oldest son, Henry, shared this with me recently off Imgur.com. I don't know what touched me more: Grace's understanding and love for her brother, or Josh's love of himself and desire for social connections and friendship. Either way, it's a valuable reminder that we all need companionship, we're all more alike than different, and we all should be encouraged to look beyond differences to the similarities that enable us to connect with one another in a myriad of different ways.

Unfortunately, as youngsters with disabilities grow up, their opportunities for social experiences diminish in comparison to typical peers. Our son's classmates, for example, are all consumed with driver's licenses, girlfriends, house parties and many things still inaccessible to Andrew. We continue to seek out ways for him to enjoy kids his age, with and without disabilities, but they're unfortunately not as frequent or easy to participate in as he would like.

Our kids often straddle two worlds. They want to function independently among their typical peers, but they still need assistance from others and are simply not as independent as they'd like to be, unfortunately. What kinds of social outlets exist in your community that might benefit other teens in other places? I'm trying for the "search and reapply" strategy here. Share and share alike. There's so much room for improvement -- and so much fun to be had.

Making Meetings Matter

Ever since Dick Clark helped us ring in the new year, I feel like all I've done is go to meetings -- mostly for our son, Andrew. Meeting to discuss how the end of Andrew's first semester is going. Meeting to determine what needs to be changed to make second semester most successful. Meeting to identify and plan what transition work we must undertake to prepare for Andrew's life after high school. And then there are all those "informal" meetings to obsess over how can we integrate medical needs with academic and social ones. Plus meetings with doctors, therapists, wheelchair manufacturers. And of course meetings to ensure this teenager still gets to have fun. Stop the insanity!

But it's not insane to utilize resources and get the best thinking on important topics that affect our kids' lives. And meetings are a great way to do this, even if they come in abundance at the start of the new year. You can avoid having unproductive meetings, though, especially as they relate to your special needs child. Here are some good tips that have served us well over the years:

1. Prepare, distribute and adhere to an agenda. Tell meeting participants what you expect to accomplish by the end of your time together so everyone knows what the end goal is. This goes for school staff, medical professionals and anyone else on your child's "team." Everyone is busy, and people should appreciate the clarity and planning.

2. Get the right people in the room. Make sure meeting participants have the authority to make decisions so you can actually make progress in your meeting, not just develop a list of questions and needs coming out of it. This is especially important for school meetings, where some administrators are more powerful than others. Get persons invited who can approve requests then and there so you don't waste time waiting for responses from "the powers that be." With regard to doctors, it's often possible to convene a team of experts so you can weigh different opinions at the same time. Sometimes, all you have to do is ask.

3. Assign a time-keeper and note taker. These are vital roles and people should be pleased to be asked to perform them. The time-keeper can help everyone stay on track with the agenda. The note-taker can ensure everyone is on the same page in terms of understanding the meeting discussion and next steps. Parents and teachers should listen to the conversation and process the information as a priority, so I recommend they refrain from filling these roles, ideally. Wonderful friends and neighbors have accompanied us to hospital appointments and served as a second set of ears with pen in hand, simply so I wouldn't have to. What a gift.

4. Hire an advocate. Many parents are finding that a paid advocate helps them navigate the myriad of special education issues they face with school-aged children. We're among those lucky folks who have found an advocate that knows what questions to ask, who to ask them of and how to get answers quickly on vital and sometimes sensitive issues related to our child. She certainly knows more about this area than we do, and she helps direct us and facilitate progress with the school district. It's a win-win-win situation (since Andrew wins, too).

5. Remember your priorities. Even with super-human powers, we can never accomplish all we need or want to in one meeting (alas, I am not perfect!). Reminding myself that we're working to optimize Andrew's potential, enabling him to become the independent young man we know he's capable of being, and creating stimulating, enriching and fun-loving environments in which he can grow and thrive is what's most important.

Based on that job description, I think I need to schedule another meeting!

Talk to TSA

The TSA has launched a new "TSA Cares" hotline to help travelers with disabilities and their families. I'm told callers can simply call 1-855-787-2227 to explain their disability-related concerns or medical issues and ask for assistance while traveling throughout the continental US. The TSA suggests calling 72 hours in advance of a flight in order to get the most satisfying assistance. You can also use the hotline to offer suggestions or file complaints. It's open Monday through Friday 9 a.m. – 9 p.m. EST.

Did you fly this past holiday season? Did you find the TSA elves naughty or nice?

So hoping this is a roll in the right direction.

Shame on You, Mayor Bloomberg

As my family will attest, I rarely say "I told you so." (Come on, guys, support me on this one!) But this is just too good to pass up. New York's Taxis for All Campaign recently issued a public letter to New York Governor Andrew Cuomo that tells it like it is on the subject of accessible cabs in NYC. They're necessary and they're the right thing to do, period.

Unfortunately, neither the letter nor Gov. Cuomo could make magic on this one. Yesterday, NYC's Mayor Bloomberg and Nissan representatives introduced the "Taxi of Tomorrow," which is scheduled to fully replace all New York Taxis beginning this coming October. It's definitely NOT accessible to wheelchair users, and Mayor Bloomberg likes it this way. I just don't agree.

Less than 300 out of 13,000 yellow cabs are currently accessible to wheelchair users in the Big Apple. The subway doesn't cut it, as our family well knows, and buses are not an ideal option much of the time -- which is why 13,000 cabs remain in business, except to serve wheelchair users, of course. Similarly, if you are non-ambulatory and would like to hire a livery car, only 23 vehicles out of a fleet of 35,000 can accommodate you. Really? Really!

The Taxis for All Campaign's rather obvious assertion is that most ADA improvements help people with disabilities AND many others, including parents with strollers, older persons with mobility issues, and delivery people pushing carts, to name a few. We've all appreciated the lack of a step at times, I'm sure. It's simple universal design, and that's why it's called "universal."

Since my choice for Tomorrow's Taxi, the Karsan Kab, is out, I had high hopes that Mayor Bloomberg would be pursuaded by clear thinking and common decency as he made an important decision about public transportation and the future of the Big Apple. Alas, he didn't get it right and now people will continue to struggle -- unless they move to London, where all cabs are accessible and it doesn't seem to be an issue or a challenge. Maybe I should just rethink the American Revolution and try remembering why the US is better than the UK. Nah. I think I'll just go make dinner instead.

New Year! New Me?

Happy 2012! With the start of the new year, I've committed to a variety of new things (please don't call them resolutions), including building this blog and creating a robust, supportive and informative (possibly informed?) virtual community through it, too.

I've had this delusional goal before, but life always seems to get in the way. Here I sit, though, on the second morning of the new year, really wanting to do this -- wanting it more than many of the things that I spend my day doing, and I do believe it will be time well spent. Interestingly, as I type this, our 15-year-old-son is completing his application to a summer conference in which he could learn more about self-advocacy and leadership. I think it's time for Mom to lead and self-advocate a little more, too. So...blogging it is.

My call for help is that I'd really love your advice and ideas on how to build readership, comments and general interest in this blog -- no idea is a bad one, I promise. What topics to cover? How much ranting is too much? Who else would you like to hear from? How can I make this vehicle most useful to other families and individuals?

Out with the old habits and in with the new. Posting every six months just isn't good enough. Life gets in the way, sure. But if that happens again, it's a sign I need to stop blogging, I think.

Won't you please start you new year off right and let me know your suggestions?

Can I Have This Dance?

Talk about heartwarming. This one makes your chest sweat. And it reminded me of several important things:

1. Kids just want to be "normal." Many teenagers want to go to their school dances, even if they can't "cut the rug" like the rest of the gang. They want someone to ask them on a date, or accept their invitation. They just want to participate and make special memories.

2. Siblings of kids with special needs "get it." JT Thomas understood Joslyn Lovell before they even shared a conversation. He has watched his brother grow up and struggle. He has empathy and a different perspective. He is a better person for it.

3. There is good news in this world, we just have to look harder for it. Most of the news stories surrounding this year's prom season centered around drinking and driving. This one got buried, but it's worth digging deeper to have your heart warmed.

Rolling Protest

Most people don't choose to be disabled. And not many pretend to be just so they can receive government benefits. In my experience, the vast majority of people with disabilities want to contribute to society and lead full and independent lives. It's just harder for them. And, as one participant of last week's London march put it, "Life is more expensive for them, too." Amen.

Governments in the UK and US need to carefully and cautiously monitor the funds they provide to assist people with disabilities, not cut them.

Kudos to the brave people who turned out last week in London. While it wasn't as beautiful as the royal wedding, it certainly is newsworthy and hopefully impactful, too.

Is This Progress?

32 acres acquired for Jacksonville community for special-needs adults | jacksonville.com

Some call it a much-needed "true" community for people with disabilities. Others see it as a major step backwards on the road to full inclusion. From my perspective, this may be a wonderful lifestyle option for people who want independence, but are limited in terms of physical or intellectual capabilities. We've always assumed, because of his disabilities, our son will need to live in an urban environment with easy access to public transportation, entertainment, work opportunities and social activities that he enjoys. This might be a high rise apartment that he shares with a few other young men. But it could also be a planned living development that works hard to create a sense of community for its residents and the people who care about them. If we've figured out a way to provide for the needs of our aging population in this way, why not take a closer look at how such a "center-based" approach might benefit people with disabilities? If someone can live on their own, great. But if they need services and resources that are more cost-effective when shared, or if they're social and fearful of being marginalized in a group home or shared apartment -- well, this may be the living arrangement of their dreams. Choice is the key for so many of life's challenges: religion, public education, affordable health care. Shouldn't we consider this possible choice, as well????

What are you looking at?

Hooray for parents who expect the most from their children, no matter what challenges they may face. This young girl has a world of obstacles ahead; however, her mother maintains that happiness is their top priority. Good for them.

Regardless of how optimistic they are, however, this family will likely get stared at a lot. Even though people come in all colors, shapes and sizes -- those that look different elicit stares almost daily. Thoughts on what do if people stare at someone you know and love:

1) Find the courage to start a conversation. You may be able to enlighten them about disabilities, human emotions or just the simple joys of being friendly.

2) Wave or say hello, even if it's awkward. At the very least, this will probably cause them to stop staring.

3) Invite them to speak directly to or ask a question about the person they're staring at. This works especially well with kids. I will sometimes ask a young child, "Is there something you'd like to say to us?" They'll usually talk about Andrew's wheelchair or ask "why doesn't he walk?" Then, Andrew can explain for himself.

4) There's no denying it -- rude people exist in the world. If all else fails, stare back. We have made this a real art in our family.

5) Never lose your sense of humor. This holds true for just about everything in life, doesn't it?!

Two Thumbs Up

Kenmore native wins his OWN TV show: wivb.com

This is so exciting. Doesn't need much commentary from me. Many friends had told me about this guy. I was too busy to even search him on Google. Then, low and behold, Oprah gives us all a chance to get to know him so much better. He is wise beyond his years, funny and will now doubt teach viewers so much. A new show, hosted by Zack, will soon air on the Oprah Winfrey Network and profile people with disabilities who travel the world. Amazing! Groundbreaking! Inspiring! And entertaining for sure! Oprah is smart. I can't wait for the first episode.

Taxi of Tomorrow

This week, the Turkish company, Karsan, introduced its proposed design for NYC's "Taxi of Tomorow" contest. If selected, it will carry the designation for 10 years. Interestingly, this vehicle features a ramp that can be deployed to either side of the "car," for use by passengers in wheelchairs. Simply terrific! Let the race begin

Prolonged Absence Unexcused

As my close friends know, Andrew has been overwhelmed with additional back surgeries and a nasty bone infection since last November (my last posting). Sorry for the prolonged absence, but life has taken a few unexpected (and time-consuming) turns. Hello 2011. Will try to more frequently come out from all the snow and ice and relay interesting and/or informative news to you on the subject at hand. Here goes...

Good people do great things. Recently, an amazing young man named Hans Smith opened doors so people with physical limitations can access the joy and fun of video games. Our 14 year old, and his older brother, as well, are keen to try this out. If only I hadn't taken the video games away so everyone would read more! Hmmm...guess I better get on that.

Let us know if you're familiar with other news of this kind. It always warms my heart to see and hear about the strides folks are making to help make recreation and entertainment enjoyable for ALL.

Now, play ball!

Happy Birthday Alice

I received this clip today from a friend. It accompanied an email that reminded me to stay positive, no matter what life throws at you. It couldn't have come at a better time. I'm tired and sick of hospitals, pain, surgeries, medicine and having to watch our son go through so many things that a 14-year-old kid just shouldn't have to endure. Having said that, I'm now reminded that we all have hardship to endure, life is rarely fair, yet there is beauty everywhere. If Alice could find it, everyone can.

So, when you have one of these days, remember Alice and her optimism. Turn on the radio or plug in your iPod. Whatever your taste in music, let it take you someplace that's less challenging -- even for just a short while. Enjoy life.

iPad Benefits Kids with Special Needs Too

I'm not generally one to say, "I told you so," but I really did this time.

When Apple introduced its iPad awhile ago, I told my husband it was a perfect device for kids like our son, Andrew. The screen is bigger than an iPod Touch, which is too small for Andrew to manipulate due to his fine motor limitations from cerebral palsy. And many of its entertaining features go far beyond the capabilities of a PC. Since then, Andrew has obtained an iPad of his own. He uses it to surf the internet, communicate via Facebook, download music and even explore "Romeo & Juliet" with a special application that enhances his homework. He also watches movies and YouTube on it. It is truly amazing technology.

In Andrew's case, the iPad supplements a laptop PC provided by our local school district. The laptop is great for schoolwork and books online. He can also email assignments to his teachers and track homework online. It's a great TOOL. The iPad, on the other hand, is a fabulous TOY that enables our son to access a variety of worlds and interests in an easy-to-use interface that's incredibly accessible. He takes it on vacation, to doctors appointments, to friends' houses and is now using it in the hospital (making our stay much more tolerable). Importantly, the iPad is something that Andrew shares with his non-disabled peers. There's no stigma with it, as is often the case with less mainstream assistive technology. It's just fun!

Nothing is perfect, and our son is still working to master certain aspects of the iPad and its sensitive touchscreen. Still, it's a joy to watch him as he perfects his hand movements to keep up with his passions and brainpower.

Great to hear that Steve Jobs and the folks at Apple are actually excited about the many ways their technology can help children and others with "special needs." Perhaps the best is yet to come.

Sayonara Minivan

Forget that we just bought a new handicapped-accessible minivan. I'm still thrilled to hear that I may not be destined to drive a minivan for the rest of my life, now that the Vehicle Production Group has created the new MV-1. This car has been specifically created to meet the needs of passengers in wheelchairs, and it does so in a way that looks safe, economical and fun -- not to mention just a little bit English. Move over Mini Cooper, here we come!

When our family traveled to London recently, we marveled that every black London cab had a ramp and could easily accommodate the five of us, including Andrew in his wheelchair. Looks like New York, along with many other U.S. cities, may now be able to follow suit. And if I'm lucky, I'll be cured of my minivan-itis forever! Silly thing to hope for with everything wrong in this world, but a mom can still dream.

Work for Change at Any Age

With back-to-school season upon us, I thought it was worth pointing out something great that just happened in Kansas. According to local media, students at Lawrence High School recently overhauled their homecoming rules so all students are eligible to serve on the homecoming court. This is really inspiring, especially given that many school districts across the country still don't fully comply with ADA laws, which were enacted more than 20 years ago.

I was never a homecoming queen, but I remember this part of high school quite fondly and am thrilled that kids in Lawrence care enough to include everyone. 800 signatures is a lot. So refreshing to see this behavior instead of reading about people who burn the Koran. Even the youngest people in our society can challenge unjust laws and outdated "rules."

Teach your kids to advocate for things that matter to them. It really does make a difference.