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?