Have Wheelchair...Will Travel

We're planning another family vacation. Just the thought of it stresses me out; however, I'm trying to stay positive. No matter the extra challenges, we continue to have great success exploring the world with Andrew's wheelchair. Our family has traveled to Europe, the American West, Disneyland and Disneyworld, and most major US cities together. Here are a few things we've discovered along the way:

1) Use a travel agent. Ours telephones hotels/resorts in advance of our trip and informs them of Andrew's special needs. I have a Word document that I share with the agent. He then "manages" the accommodations and it's one less thing for us to worry about. We spell out everything from bathroom needs to bed preference, then he takes care of the rest. It's a huge service.  Email or call him and maybe  Tim Hennigan can help you, too.

2) Take a back-up chair. Andrew's powerchair has broken down in Disneyworld, a Colorado ski resort and in the middle of New York City. We now travel with a portable Convaid push-chair that Andrew calls his "travel chair." It's just a back-up in case of an emergency. And when United Airlines broke his powerchair en route from NYC to LA, we were really glad to have the travel chair to use for our entire CA vacation. Note: this chair fit easily into every traditional London cab we used several years ago in England. All were equipped with a ramp and we just rolled Andrew into the the "back seat" area, which easily fit all five of us. Wonderful!

3) Call the airlines repeatedly. When we book plane tickets, I always get the name of a customer service representative at the airport. I call at least 5-6 times to make sure they have all the information they need about Andrew and his chair. I specifically request an escort for our family from baggage claim through boarding. They never mind providing this, since it makes their lives easier, too. Personally, our best experience ever with Andrew and as a family was when we flew to London on Virgin Atlantic Airways. They even installed a special plane seat for Andrew, which is designed to provide better postural support and positioning to children with special needs. Whoa!

4) Wheelchair Getaways has been a great van rental resource for us. We've used them in a number of states and are about to rent from them in Chicago this coming Winter. They'll meet you at the airport with your van and our experience has been nothing but good. Rates average about $125/day for a converted minivan.

5) Consider renting a condo. We're renting a 2BR condo this February in downtown Chicago. More space and less money than than two hotel rooms, and the entire building is completely accessible to persons with mobility limitations. We can't wait!

Advocacy

Politics not withstanding, I don't believe Sarah Palin knows a whole lot yet about parenting special needs children.  Lucky for us, though, there are a number of people and organizations that do.  

Over the past decade, our family has identified some wonderful non-profit groups dedicated to improving the lives of people with disabilities, from a number of different perspectives.  Starting at birth, there's the March of Dimes.  They are committed to reducing premature births in the US and worldwide as quickly as possible.  Easter Seals is another group with a long history of services, programs and lobbying for the rights of people with disabilities. Sign up to get on these organizations' email alerts and you'll be amazed at what you'll learn. Plus, they make it easy for you to stay active and advocate for your children via the worldwide web.  

There are so many places that fight on our behalf at the state and federal level.  And others who raise money for important grants to create local programs that improve the lives of our families and loved ones in our very own communities.  Spend some time on the internet to learn more about what's available in your area and how you can help.  It's really time well spent.

Financials

With our global economy crumbling more each day, it's more important than ever to have family financial plans in good order.  This is particularly true for a family with special needs.  Thankfully, we got our ducks in a row years ago and established a Supplemental Needs Trust for our son, Andrew.  We did other financial planning for our "typical" children; however, planning for Andrew's disability required special legal advice, documents and investment in order to preserve his options as an adult and ensure he is protected long-term.  

We found expertise at the law firm of Day Pitney LLC and attorney Dane Dudley (bddudley@daypitney.com).  They have offices in CT, MA, NY, NJ and Washington, DC.  Dane explained all sorts of scenarios and helped us prepare for each of them.  While we hope we never have to call upon these crisis plans, we feel confident that our family will be provided for no matter what happens and that Andrew especially will have what he needs to enjoy a long and happy life.  

If only fixing the global economy were so easy.

Elevators

Elevators scare me.   This has been the case ever since our son, Andrew, started using a wheelchair.  Elevators break down and close before Andrew gets completely inside them.  They are unreliable and, as we all know, they are not to be used in the case of a fire.

What do you do, though, if you're reliant on elevators and can't physically climb stairs? According to the New York Times, residents of some New York City public housing developments met with city officials yesterday to protest defective elevators located throughout the city.  During 2008 alone, the Housing Authority's 3,337 elevators had more than 43,000 reported failures. Residents deserve better, and they are demanding it.

Families like ours take steps like the following: 1) live in a ranch house that doesn't require stair lifts or elevators for daily navigation to bedrooms and bathroom 2) when traveling, book hotel rooms on the lowest floor available 3) teach Andrew and our other children proper procedures for what to do if you're left on an elevator alone because the door closed before everyone in your party could get in and 4) notify doormen and other building management when visiting friends in high rises, just so they know we're up there (with Andrew and his wheelchair), in case of an emergency.

Andrew's physical therapist, Kate, is also starting to work with him on an "elevator protocol."  This will be his standard procedure for entering an elevator in any public or private space.  Routines make life easier.  We're still trying to figure out if Andrew should back into the elevator and then drive off, or drive on and back off.  Once things are set, Kate will work with Andrew to master the protocol with his power wheelchair at school.  We'll reinforce it within our community.

In the meantime, we're mindful that when we see someone in a wheelchair who is navigating an elevator, we should remember how scary the experience can be.  I teach our kids to smile, offer assistance, and always hold the "door open" button until everyone is safely inside or out.   Come to think of it, we should do this for everyone regardless of their abilities, shouldn't we.  

 

Social Networking

Isn't technology great? Our son, Andrew, just tried convincing Dad that he's old enough for a Facebook account, like his older brother, Henry.  Henry, it turns out, just "friended" the son of Andrew's aquatic therapist.  (I think Andrew may be jealous!)  And Mom received a message to her Facebook account today from Easter Seals about ADA laws.  

Now more than ever, social networks like Facebook help us all connect better to each other. We can use this technology to have fun and stay connected with friends and family everywhere. We can also use it to share information, ideas and resources with people "like us," learning from each others' shared experiences.  

I often wonder, what will this technology offer people like Andrew as they get older and long for more social interaction than may be physically possible because of their limited mobility?

  

Making Inclusion Work

We've spent the past week in meetings with our son's school.  Andrew attends a local magnet middle school here in Connecticut.  He receives special education services and a full-time aide to assist with all aspects of school life.  He is fully-included in most 7th grade classes, but pulled out for special instruction in certain areas.  It's a complicated puzzle to piece together, and I constantly wonder if we're making the right choices and prioritizing the right things. Where does he need extra help?  How can we optimize his time in a typical classroom with typical peers?  Can we make inclusion work for him in a way that helps him achieve his full potential and is still manageable for him, his teachers and his home life?  

Parent Dan Habib, who's son Samuel has cerebral palsy, struggles with these same questions and ultimately created a film about the subject.  "Including Samuel" chronicles the Habib family's journey through inclusion and also offers perspective from educators, advocates and people with disabilities.   It's terrific.

Now, I'm off to meet with Andrew's school to see how we might be able to use this resource within the district.  So many possibilities!

Parent Coach

Amazing what came across my email today.  Something called www.specialneedsparentcoach.com.  I haven't checked it out yet.  Maybe after I take my morning walk with Rex, the dog, and one of my friends (also a mother of a child with special needs).  (Still looking for balance, am I. ) Hopefully, it's a good resource.  I can always add to my list.  More on that later...