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...

Tragedy Supports the Need

According to an article in today's STAMFORD ADVOCATE (www.stamfordadvocate.com), a 62-year-old mother in my town killed herself Sunday, along with her 41-year-old physically and mentally handicapped daughter.  Life was simply too difficult.  Reports indicate the mother suffered from mental illness and did not think her daughter could survive without her help.  Such a tragic situation, right in our backyard.  It makes me think about the countless parents out there in towns like mine who are struggling to help themselves and their children with special needs.  No matter how much we love our kids, the challenges are often overwhelming.  And they don't go away as the children get older.  As communities, we all need to do more to support people with disabilities of all ages, and their families .  Schools, places of worship and community centers need to remember these kinds of families when developing programs, resources and support.  And we need to get the word out better about the kind of help that's available.  While her problems were obviously extensive, this woman perhaps would not have felt so helpless if she had better access to information and services for herself and her adult child.  We can do better.  We must.

Finding Balance

I'm feeling old today.  Body aches.  Head hurts.  Everyone needs something from me, and I'm tired of giving.  But tomorrow is a new day.  And if I can just find a way to balance the needs of my family with my own needs...well, life will be grand, right?  

Doing so is difficult in even the most "typical" of families.  In ours, however, finding this kind of balance is often impossible.  Our son, Andrew's, needs outnumber everyone else's and there just aren't enough hours in the day to learn everything I want to in order to be the best mother, teacher, advocate and friend that he deserves.  

If you find yourself in a similar situation, I hope you'll avail yourself to my blog.  Over the next several weeks, my goal is to post information our family has gleaned over the years on a variety of issues related to Andrew's disabilities (and abilities!).  With input from my family (including Andrew), I'll share thoughts, advice and resources on a variety of subjects, including: accessible travel, toileting, caregivers, equipment, therapies, school, community involvement, friendship, financial planning, and just good old family fun.  

Hopefully, by conversing with you about these things and more, I'll learn as much from this blog as the people who access it do.  With any luck, we'll achieve balance together -- no matter how long it takes.  Fasten your seat belts...