Defining Moments

Are there things in your children's life that you feel have dramatically changed things for the better? Sort of a shot-it-from-the-rooftops better?

Since my 19 year old son left today for the Army, I was reflecting on both his past and my other children's past. I realized that there have been momentous days in each of their lives - moments that I believe really changed the course of their lives for the better.

For Corey, my 19 year old, making the decision to join JROTC in the 9th grade was his moment. Corey as you know if you are a long time reader of this blog, had an early childhood that was difficult to say the least. Raised for the first 10 years of his life on the streets of Baltimore by an alcoholic, drug addicted birth mother took its toll on him. But the love of family (he joined me at age 12) and the order and consistency of JROTC really prepared him for a future that will be bright.

For Ashley, I believe the moment that set her life on a better course was when she got her G-tube at age 2. Born at 26 weeks gestation to an alcoholic birth mother, and facing a ton of medical issues, she was headed down a very difficult health path. But the G-tube allowed everyone to relax and work on feeding issues as well as the rest of her medical issues. I truly believe that her good health today was defined at that moment of surgery.

For Jessica, her moment came in middle school. Prior to that time, Jessica had battled rages and the inability to attach to anyone, least of all me. But in middle school, her teacher and the rest of the school staff finally joined forces with me to prove to Jessica that she could trust and love and attach. Though she still has demons to battle, I believe that she will do so knowing that she is loved.

And finally for Ronnie, his life changed drastically when he got an IPhone. I know, I know - that doesn't sound like that big a deal. But what that phone did was to open his world to his peers. In a world where not a lot of teenagers know sign language, he is now able to communicate via text with all his peers. And for those peers that do sign, he is able to use the phone as a video phone and sign back and forth with a peer. His world opened up that day he got the phone, and it continues to get larger with each passing day. His communication abilities, his literacy, and his technical knowlege is growing by leaps and bounds.

What about your children? Have there been defining days in their lives? I would love to hear about them!

Thinkbeyondthelabel.com

I love these videos, and not just because in a very few years, I will have two children with disabilities entering the workforce (hopefully).

Pray for Robbie

ROBBIE WAS FOUND ALIVE FRIDAY AFTERNOON!! AFTER 6 DAYS, LITTLE ROBBIE WAS FOUND IN A QUARRY, CURLED IN THE FETAL POSITION, COLD AND DEHYDRATED, BUT ALIVE AND ALERT!!! HE WAS IMMEDIATELY AIRLIFTED TO THE HOSPITAL WHERE HE WAS REUNITED WITH HIS FAMILY!!

Robbie Wood is 9 years old and has a severe form of autism. He can't speak, and he likes to run and hide from his caregivers. Last Sunday afternoon the unspeakable happened. While on an outing with his father, his father's girlfriend, and his brother (who also happens to have autism), Robbie darted away. The outing was in a civil war battlefield park, a park that is 80 acres in size, and surrounded by a thousand more acres of dense forest, cliffs and a river.



As of the time this blog was written (Wednesday afternoon), Robbie still had not been found. County police, state police, professional search and rescue organizations and 1000's of volunteers have been combing the vast area looking for Robbie. Robbie was dressed only in a long sleeve teeshirt and athletic pants - clothes not warm enough for our 40 degree nights. And, he hasn't had any food or water since Sunday afternoon.

Everytime I think of what Robbie is going through, as well as what his parents, other relatives and friends are going through, tears flood my eyes. Each passing hour makes keeping grim thoughts out of hopeful hearts harder and harder. There have been vigils and prayer circles and volunteers who vow never to stop looking for Robbie until they find him and bring him home. But there have also been people who offer negative comments about Robbie's parents.

Comments like, "How can a father just let a son wander off?" and "What is wrong with these parents?" and "Robbie has scratches and bruises on his face in that picture? Did the parents do that to him?". And that's the milder of the negative comments and questions.

I know what it is like to raise a child with significant special needs. I understand the running and hiding. I have experienced first hand the self-injurious behaviors that to an untrained eye would point to a parent or caregiver. But the police have given absolutely no, as in a big fat NO, indication that this is anything other than Robbie has run away.

Why do people who have no clue about parenting a child with autism feel the need to ask questions and make comments that do nothing but hurt the family more? Honestly, it really, really pisses me off...

Please keep Robbie and his family in your prayers.

Special Exposure Wednesday

So where are the trick or treaters??? Punkin Face is very anxious to see them!!

Hailing a Cab (maybe)

Although we've never made the trip, my family would love to visit New York City. We've never been in a city that large or in my opinion, that exciting, and a visit one day is very appealing to us. But I may now have to rethink that...

You see, New York City's Mayor Bloomberg, thinks accessible taxis are a waste of time and money. And of course, one cannot visit NYC without at some point having to take a cab. Here are a few of Mayor Bloomberg's comments about accessible cabs:

"Their suspension is much worse, so the average person riding in them finds them really uncomfortable,"

"If you're in a wheelchair, it's really hard to go out in the street and hail down a cab and get the cab to pull over and get into [it],"

Mayor Bloomberg also said that accessible cabs would inconvenience able-bodied passengers, and noted that hacks don't like them because they are so spacious that the drivers can't establish rapport with riders - and get smaller tips as a result.

The sad fact is that only 231 of the city's 13,000 taxis are accessible to people with wheelchairs. And since my family has two wheelchair users, I'm guessing a trip to NYC is not in our future...

According to the New York Daily News:

Champions of the handicapped immediately ripped Bloomberg's "insulting" riff.

"The mayor's completely out of touch," said Assemblyman Micah Kellner, a Manhattan Democrat who was born with cerebral palsy. "When was the last time Mayor Bloomberg used a New York City taxi or a wheelchair?"

Added Edith Prentiss of the Taxis For All Campaign: "It's a sad day for New York City when a mayor works so hard to deny people like me the right to take a taxi. It's wrong, it's indefensible,and it won't stand."

So where do you stand on this issue? Do you think New York City needs more accessible cabs, or do you think the Mayor is correct - it's not a realistic solution? Keep in mind as you answer that question that the decisions made in New York City have the potential to drive decisons for smaller cities - maybe even yours.

(image courtesy of David Handschuh, New York Daily News)

A Tribute to Fred Fay

“Disability is equal opportunity," Fred Fay told the Globe in 1998. “Anyone can qualify at any moment."

His moment arrived in his junior year of high school, when his hands slipped as he performed a move he often executed on a trapeze in the backyard of his family’s Maryland home.

Left a quadriplegic by the 10-foot fall, the young man had to decide what he would attempt to do with the rest of his life. Choosing activism, he became an early advocate for disability rights, playing a role in everything from ensuring the Metro subway in Washington, D.C., was built to accommodate wheelchairs to lobbying lawmakers to adopt the Americans with Disabilities Act.

Dr. Fey passed away on August 20th of this year at the age of 67, but his legacy will live on. A Life Worth Living, a film about Fred's life and his role in the Disability Rights Movement, is scheduled to air on PBS on October 27.

Check out this trailer for the show, and then be sure to check your local listing for the air time on October 27th.

Unstoppable

October is Disability Awareness Month.

October is Down Syndrome Awareness Month.

Did you know that October is also Spina Bifida Awareness Month? It is, and because I have an amazing son who happens to have Spina Bifida, I wanted to share some information with you!

* Every day in the United States, an average of 8 births are affected by Spina Bifida or a similar birth defect of the brain and spine.

* Spina Bifida remains the most commonly occurring complex birth defect in this country.

* The root cause of Spina Bifida is unknown and the effects for each person are different.

* Spina Bifida is a multitude of problems that affect the mind, the body and the spirit.

* Advancements in treatment and prevention have opened new doors for those with Spina Bifida.

* While it presents unique challenges, those affected by Spina Bifida are able to attend school, work, raise a family, and spend time with friends just like everyone else.

And as you know if you are a regular reader of this blog, Spina Bifida does not stop Ronnie from being a wheelchair basketball star!!!

To celebrate this month of Spina Bifida Awareness, the Spina Bifida Association hopes to bring to light through pictures the successes of those who live each day with this birth defect. There are a lot of ways in which individuals and families can get involved, and one of those ways is by submitting your vote for the “Celebrate SB,” Facebook photo contest designed to acknowledge the accomplishments of the Spina Bifida community. Voting will be open through October 31st on Facebook. Fans can vote only one time per day during this period on their favorite photo!

Please take a few moments and check out the photos! Then cast your vote for your favorite. In the process, you might just be surprised by the non-limiting nature of Spina Bifida!!