Stories - The Good, The Informative, and the Very, Very Bad

I've run across several stories of interest this week and thought I would share them with you. One will teach you something - one may make you as angry as it did me - and one will show what is possible if we all care and work together.

And one other note - I am finally getting some time off from my very stressful job for the next two weeks. I plan to 'unplug' as much as possible, and spend my time enjoying life with my children. I may not blog much until after the first of the year, but I can guarantee that I will be well-rested, happier, and in a better frame of mind when I do come back! I hope you all enjoy your holiday celebrations, and I wish for you in the New Year all that you dream of!

*************************

iOS7 (iPhone) assistive features for those who have disabilities

21st Century eugenics

Place Matters

*************************

And finally, I wanted to share my all-time favorite Christmas song with you. So many people have recorded it, and I have loved every one. Happy holidays!!

Never An Excuse

The following news story appeared in the Pittsburgh Post Gazette yesterday. The title of the story was Father, disabled son found dead; friends call killing an 'act of love'. I have included the full text of the story but have inserted my comments in bold. This crap makes me crazy, and at the risk of loading this post with enough bad language to receive an NC-17 rating, I will stop there. But any of you who know me or have been following me for any length of time, are likely to know what is going through my mind.


When police found 78-year-old Richard Liposchok and his mentally disabled son, Mickey, 52, dead of apparent gunshot wounds inside their Port Vue home Tuesday morning, the news was a jolt.

"I got all teary-eyed and upset. It bothered me," said Marshall Black, a friend and Port Vue Borough Council member who knew the elder Mr. Liposchok through the borough's Vigilant Hose Company No. 1, where both men were longtime volunteers. "I know it bothers everybody in the fire company."

It was not, however, wholly unexpected. (If it was not unexpected, why hadn't someone helped the family get the supports they needed to keep it from happening.)
"A lot of people assumed that something was going to take place here because of his son," Mr. Black said. (Again, WTF, if people assumed something was going to take place, why didn't they do something to stop it???)
Police would not say Tuesday whether Mr. Liposchok killed his son before taking his own life, though the involvement of third person is not being contemplated.

Mickey Liposchok's body was found on the living-room floor in the house in the 1900 block of New York Avenue after a housekeeper couldn't get anyone to answer the door or reach them by phone. The woman summoned a neighbor, Frank Cortazzo, who looked through a window, spotted the body lying in a pool of blood and called police.

Richard Liposchok, known to his friends as "Lippy," was found in the bedroom with a rifle, borough police Chief Bryan R. Myers said.

Both men suffered at least one gunshot wound, he said. The Allegheny County medical examiner's office expects to release autopsy results today. Allegheny County police are in charge of the investigation and did not return calls Tuesday seeking additional information.

However, Mr. Black and Port Vue Mayor Brien A. Hranics, who also knew the elder Mr. Liposchok and went to school with his son, said the death of his wife, Gail, last year, failing health and assuming the role of sole caregiver for his son were taking a toll. Chief Myers, also a family friend, said Mr. Liposchok had been depressed since his wife's death in November 2012.

"It's an act of love is what it was," Mr. Hranics said. "It was definitely an act of love." (Really? You have got to be kidding me...an act of love...murdering someone is OK if it is an act of love? I wonder if Mickey would have agreed that he was being loved when he was being murdered...)

Mr. Black said Mr. Liposchok, a retired steel worker, worried about what would happen to his son when he died and was not the type to seek help for his own problems. (Not a good enough justification for everyone else to stand by and watch someone be murdered.)
"When she passed, it was a lot on Rich. His health was deteriorating, it was getting bad. ... He was a very big guy. He whittled down to nothing," Mr. Black said. "He's a strong-minded person. He's always done for himself."

Mr. Cortazzo has lived across the street from the family for nine years and helped officers break into the Liposchok home Tuesday morning.

Gail Liposchok "was the one that took care of everybody," he said, though both she and her husband cared for their son.

"You'd always see the father and the son riding together to the store," Mr. Cortazzo said.

Reached by phone, Bruce Michnowicz, Richard Liposchok's nephew, would not speak with a reporter Tuesday evening. A relative of Mrs. Liposchok who asked not to be named also declined an interview.

"It's very sad," she said.

Tuesday's grim discovery was the second time this month that police were called to the home.

According to 911 records, the elder Mr. Liposchok had left his vehicle running in the garage for an unknown amount of time Dec. 5 and officers responded for possible carbon-monoxide poisoning.

The incident was reported to have been accidental, those records show. Mr. Cortazzo said his family helped rid the home of fumes by lending a box fan.

"As far as him intentionally doing that on [Dec. 5], I personally would have probably said, 'No,' " Chief Myers said. "But, then again, who knows what's in people's minds?"

Mayor Hranics said Gail Liposchok was Mickey's primary caregiver, and she and her husband worked hard to give their son as normal an upbringing as possible.

"That boy was their life," he said. (And that gave them the right to decide his death?)
The nature of Mickey Liposchok's disability wasn't entirely clear, but Chief Myers said he was born with the condition. Several people who knew the family said he was unable to care for himself.

After his wife's death, Richard Liposchok was seen around town less. The mayor wasn't sure if he was having trouble caring for his son, but said the family was private.

Mr. Black said Mickey was usually kept upstairs when he went to visit the home. (And this was a child that was being given as normal as upbringing as possible? Doesn't anyone recognize the red flags here?)
A longtime member of Vigilant Hose Company No. 1 who held various positions, including president and recording secretary, Richard Liposchok compiled the company's history through meeting minutes, newspaper clippings and photographs and was known as the town's historian.

"He's going to be missed. He was a very good guy. He was always fun to get in a conversation. He was up on everything. He was well liked," Mr. Black said. (Glad the father was such a well liked guy who will be missed. Is anyone going to miss Mickey?)

Special Exposure Wednesday

A boy and his dogs....

 

 

 

 

Uneasiness, Guilt and Uncertainty

A friend of mine who, like me, has a child with severe disabilities, is having a rough day today because her son has a new nurse. The nurse who had been with him, and had become a part of the family, needed to move on, and through the tears and the goodbyes, a new nurse was found. But no matter how perfect the new nurse seems to be, the first day, the first weeks, maybe even the first month with a new person, we moms stress and worry more than we can say.

As my friend described it, there is uneasiness, guilt, uncertainty and constant second guessing. It's difficult to focus on anything else. And even if the new person is wonderfully skilled, there's still the change, the difference, the newness - all the things that our children with severe disabilities often have a difficult time coping with. It is a situation that happens all too frequently, and one which our children will face the rest of their lives.

So what can we do, if anything, to make it easier, better?

Often we find it difficult to explain the changes to our children. One day a beloved friend is there and the next someone else is there. The person that helps with the most challenging and the most intimate parts of our child's life, the person the child has learned to trust, is one day gone and a stranger has stepped in. It would be nice if we had the luxury of having both people together for a period of time, but insurance and finances usually keep that from happening.

And the issue doesn't just surface when we are replacing one fulltime person with another, it happens when we need backup care for our children. When the fulltime person is sick or wants to take a vacation. The agencies we deal with will send a substitute over, but at least for me, I usually opt to forgo the substitute and take time off from work myself to be with my child. It's just easier for me and I believe for my child to not have to face to temporary changing of the guard.

I don't know how to make these changes easier, how to help my child understand that helpers will come and go. Do you have any suggestions?

It's The Small Things

Ashley and I are alike in so many ways that sometimes it seems like I really did give birth to her rather than adopt her. Like me, she loves to cuddle on the couch on a cold, rainy winter day. We share the extra long couch in the living room, her head at one end and mine at the other. She tucks her feet under me and we share a down comforter. We could both spend hours like that, napping on and off.

She is the child of my heart, regardless of how she joined my family. I truly believe we were destined to be together, long before either of us knew the other existed.

There are and have been so many blessings in my life, and Ashley is just one of them. Throughout the holiday season, I will highlight more of my many blessings, but today, tucked under this comforter, my back being massaged by Ashley's constantly moving feet and toes, is one of my most favorite things!

Love This Kid!

A precious little girl whose parents are deaf made sure her Mom and Dad could follow along during her kindergarten class’s holiday concert by using sign language and hilarious facial expressions.

Watch her sign and sing along while her class performs a Christmas version of “Bingo Was His Name-O” and other classics.

"I just want to pee alone"

I'm sure by now almost everyone has seen the YouTube video by Ylvis, What Does the Fox Say? Here is an hilarious parody of that called, What Does the Kid Say. I like it even more than the original!!

Special Exposure Wednesday

TWINS!

A Bite of the Big Apple? Maybe Soon...

I have always wanted to take my family to New York City. I think Ashley would love the lights and action of Times Square, and I would love the shopping! But knowing that I have two people in wheelchairs has kept me from attempting that trip. I worry about the normal accessibility issues like wheeling through large crowds of people or navigating store displays which seemed designed to prohibit wheelchair travel. But, since driving our car in the city would probably be lunacy, we would be at the mercy of taxis, and the majority of the taxis in New York cannot accomodate wheelchair users.

But that is about to change. City officials announced a legal settlement Friday mandating that at least half the city's taxi fleet be wheelchair-accessible by 2020. The details still need to be worked out, and of course there is the question of who is going to pay for the new taxis, some of which can be upwards of $15,000 a vehicle.

Right now, 231 of the city's 13,237 yellow cabs can accommodate wheelchairs. Transit buses are accessible but not always available. The city's costly paratransit system, Access-A-Ride, requires advance reservations and can turn short trips into marathons.

The agreement requires the Taxi and Limousine Commission to propose rules that would phase in the new, accessible cabs by attrition. No cars on the road would be required to undergo upgrades, but half of all new vehicles brought into service would be required to accommodate wheelchairs. The average city cab has a lifespan of three to five years.

And I am sure that passengers are going to see higher fares, a rationale for having to make the changes. Will it be worth increased fares to the wheelchair users who can finally move around the city? I know for my family it would be. So maybe by the time I retire in 5-6 years, that trip to New York City just might become a reality!

I Got Nothing

We had quite a laid back weekend. Saturday, we went to see the movie, Frozen (excellent family movie), and Sunday we watched frozen outside our windows.

Sunday was a day of rain/sleet/snow/freezing rain - kind of like Mother Nature was shopping for shoes and just couldn't make up her mind. The weather forecasters had been telling us for a week that a weather event was approaching. And because Chip very graciously got our normal weekend errands done in the middle of week, we were able to stay indoors and enjoy watching the precipitation fall.

It was a pajamas all day sort of day, with movie watching and snuggling on the couch. I turned off my brain, and have decided to not turn it back on until Monday morning at work. So as this blog post title says, I got nothing....

All I Want for Christmas!

YEA, it's December and I get to share one of my favorite Christmas songs with you again this year! There are many, many versions of this on YouTube, but this is my favorite. The man in the video seems rather sedate at first, but as he sings and signs, he gets more and more animated! Enjoy!

Body Diversity

I was having a really rotten day at the office. Too much work, not enough time, too many top priorities... But on my (very short) lunch break, I found this video. Now I am smiling...



Pro Infirmis, an organization for the disabled, created a series of mannequins based on real people with physical disabilities. The beautiful process was documented in a video (watch it above), capturing the joy of the models seeing their own unique figures recreated for the first time. But the best part of it all is that the mannequins were actually placed in store windows, filling the shopfronts on Zurich's main downtown street, Bahnhofstrasse, in honor of International Day of Persons with Disabilities today.

Now tell me you aren't smiling also.

Special Exposure Wednesday

Someone seems very proud of his muscles!

Gifting With Memories

I love everything about Christmas except one thing - the struggle to find appropriate gifts for Ashley. One of her favorite things in the world are Lego blocks. So, there's that. In the past, I struggled with buying her non-age-appropriate, but developmentally appropriate toys, but I moved past that. Unfortunately, so has Ashley. Even the loud, obnoxious light-up toys don't hold her attention very long. The girl has more than enough clothes, and shoes, oh vey, the shoes...She has 15 pairs of Converse hi-tops in every color and pattern under the rainbow. So, I knew I had to come up with something new and exciting this year.

As I thought about what things make Ashley the happiest, I realized that it's new experiences. She loves trying new things, going new places, meeting new people. I just need to remember that when I am in search of gifts, and realize that the best gift for her is based on experiences not things.

If you are in the same boat as I, here is a list of experience gifts I have come up with. Some are free, some are inexpensive, and some are not. I would love to have you add to the list!

• Rent a convertible and tour the countryside. Ashley loves the wind on her face and the sun on her shoulders. I looked into the cost of this and in my area, I can rent a lovely convertible for about $175 a day.
• Stay a night in a cabin in a state park. Most are very cheap, especially in the winter. Look for one with a huge fireplace, then sit in front of it all day and read books, snack, and nap. Sounds like heaven to me and should cost in the neighborhood of $75.
• Go to a museaum or aquarium that you've never been to before. The best ones would have some interactive displays. A zoo is also a good idea, even in the winter. You just have to bundle up a bit, and several of the zoos and museums not far from us offer free admission to anyone using a wheelchair as well as for a companion. Average cost - $20.
• Go to a movie, or multiple movies, at a Regal theatre. They also offer free admission for a companion to a person with a disability. Sneak in some treats in your purse if you dare! Cost of an average movie ticket during matinee times - $7.
• Go bowling. Sign up for emails from bowling alleys and you will receive some great coupons that make the bowling trip not so expensive. We usually don't spend more than $30 for four of us to bowl for as long as we want.
• If your loved one likes plants and flowers, visit an arboretum. If you can get to Washington, DC, the National Arboretum is spectacular. The scents, the colors, the glory of all things growing is just almost overwhelming. And the cost is the best thing - FREE.
• And while you are in DC, visit the Smithsonian. Again, all museums are FREE.
• Take a train ride. If you live near an Amtrak station, take a short round trip ride between two cities. Amtrak is very accommodating of people with disabilities, and fare is still reasonable. Average cost for 4 people = less than $100 for a short trip.
• Find a cupcakery in your area that offers cupcake making classes. Even if they don't offer classes, a little sweet talk will probably get the owner to arrange a visit and a decorating session. Best thing - cupcakes are usually free or very low cost.
• Tour your state capitol and your Governor's mansion. This time of year especially when things are decorated for the holidays. You might even run into the Governor or his family! Cost - FREE!
• Take a ferry ride. There are so few ferries left and going for a ride on one will be a memorable experience. You might even get to feed some seagulls (remember to take crackers). In most places ferry rides are free or very, very low cost.
• Get all dressed up and go to a really fancy restaurant, but just for dessert. So what if you child or family member is not used to such fancy places and may not follow all the 'rules'. You probably won't go back because a full meal there is ridiculously expensive. Probably cost - $40 for a family of 4.

So that's the start of my list. Just remember that experience gifts are often more appreciated for our family members with disabilities - for anyone, for that matter - because it means you are spending time together and building memories!

What would you like to add to the list?

All Nestled Snug In Their Picture Frames

Sorry I was MIA last week. Besides the hustle and bustle of the Thanksgiving holiday, Ashley had (successful) ear surgery on Monday to remove a tumor and I was sick as a dog most of the week with a sinus infection AND an ear infection. I did figure out that the best time to go to our local doc-in-the-box is a holiday. There was no one, and no wait, when I went on Thursday night. Besides checking me out and writing some prescriptions, the doctor and I had a nice chat about the holidays and our children.

This past weekend, as is our normal custom, we got the Christmas decorations from the attic and started spreading festive cheer throughout the house. Something I always display are the pictures of my kids with Santa throughout the years. Since my kids joined the family at varying times, and since they weren't all small at the same time, I don't have one picture with all 5 children in it. But, I do have pictures with groupings of children...or so I thought.

I realized when setting out the pictures that I had none, NONE, of Ronnie sitting on Santa's lap. He was 15 years old when he joined the family, and sitting on Santa's lap was probably not something he was wild to do. So, it just fell through the cracks. But, I decided this year, 18 years old or not, I was going to have a picture of Ronnie with Santa. So we went to the mall, endured the strange looks from the parents of sweet darlings making their annual visit to Santa's knee, and Ronnie had his picture taken!! Here is the result:

So now all is right in my 'pictures with Santa' world!!

TGIF!

Love, Love, Love Zach Anner!!! Every single one of his videos is crazy good, and I had a tough time picking just one to share with you. I do suggest that you go to his YouTube channel and enjoy everything he has to offer, and you will fall in love also :)

The Special Needs Parents Code

What? You didn't know there was a code for special needs parents? A rule book of sorts to help us navigate this sometimes challenging life we have? Well, there is and the number one thing in that code is that special needs parents DO NOT EVER bash other special needs parents, and most especially not in front of a group of people who have not walked our paths.

I participated in a panel discussion last night for a group of university students and professionals whose field of study is neurodevelopmental disabilities. Besides myself, there were two other special needs families represented. One of the two was a parent of two children, elementary and middle school aged. She was accompanied by her fiance, and she identified herself as a stong special needs advocate. The second was a father of a young boy who had received an Autism diagnosis not terribly long ago. That father and his wife, of course, knew something was different (his words) with their son, but after a long while, they finally received the definitive diagnosis.

Each of us on the panel had been instructed to share some information about our family. I shared my story as did the mother and fiance, and the father went last. He was very emotional, the way most of us were and may still be, when it came to talking about his child. He and his wife had tried for almost 11 years to conceive a child, and finally were blessed with a son. He spoke of his pride, his joy, his realization of a dream. His eyes began to mist when he mentioned that his wife started to question the child's development at his first birthday. He spoke of the search for a doctor who would understand, who wouldn't dismiss their concerns and tell them their son just needed to catch up to his peers. He talked about finally finding a developmental pediatrician who put a label to all they had been experiencing. And then he said, "My boy is Autistic...My boy is Autistic."

It felt like an AA meeting. Since my former husband was an alcoholic, I had been to an AA meeting before with him. I could still picture people from the group standing before the others and saying, "Hello, my name is ????, and I am an alcoholic." The father on our panel had just reached the same place of acceptance, and it wasn't easy. But he was there and he was ready to move forward. There wasn't a dry eye in the room.

Then the parent of the two children, the self-proclaimed special needs advocate, spoke up and said, "We don't say our children are SOMETHING...we say they have SOMETHING. Your son HAS Autism, but he IS NOT Autistic. He IS (child's name) and he IS your son, but he HAS Autism."

Okay, I get that not everyone would see this as a big deal - HAS - IS - blah, blah, blah. I happen to agree with the mom but she should NOT, under any circumstances, have called out that father on his use of terminology. The father had reached a very important place in his acceptance of his son. To call him out on his terminology trivialized all that he was feeling and all that he was sharing with us, his peers and the professionals who may offer support to his family in the future.

So, yea, there is a code, and we all need to remember that. The father on the panel didn't say anything else during the session...

Special Exposure Wednesday

Each year, my kids and I love to adopt angels from the Salvation Army Angel Tree. The Salvation Army Angel Tree program, in partnership with our local NBC News affiliate, makes available to the community thousands of angels to adopt. Each angel represents a child who without the support of the community would not have a Christmas. Members of the community choose angels from trees displayed at area malls and corporations. These donors adopt the angels by providing new clothing and gifts for their Christmas. Every year, thousands of children are given toys, clothing and other gifts through this program.

This past Saturday, we chose a 24 month old little girl and an 11 year old boy. Then we went shopping!! Here is a picture of Ashley with the two bags we filled for the children!

"All People Have The Right To Be Employed"

Although I hadn't planned it this way, I seem to have a bit of a theme going this week - employment and people with disabilities. Althought I haven't found a way to see this actual film, I'm going to keep trying and will let you know. The trailer alone makes me know I MUST find the whole film...

For decades in Toledo, Ohio, Lott Industries has excelled at manufacturing small car parts. All 1,200 Lott employees have developmental disabilities, yet the company competes with traditional non-disabled businesses and achieves the highest quality ratings. When the US auto industry crisis hits, however, Lott's market is wiped out and president Joan Browne has 12 months to reinvent or close the doors. For the workers, the stakes are even higher since their jobs are a refuge, not only from the impoverishment that affects the majority of America's disabled, but from social isolation. For employees Kevin, Wanda and T.J., work is more than just a direly needed paycheck, it's a lifeline, a symbol of their dignity, and their dreams made real. The race to find a new business plan drives this engrossing recession economy drama, but it's the humanity the film restores to the balance sheet that makes A Whole Lott More such a rare achievement.

Trailer for "A Whole Lott More" from Victor Buhler on Vimeo.

No Good In GoodWill

Just because something is legal does not mean it is right or ethical. Loophole in the law or not, this is appalling and something needs to be done immediately.

In their Words....

What are the kids in foster care thinking? Do they understand what is happening to them? Do they want to be adopted? Check out these kids who can answer those questions for you!

Throwback Thursday!

It was a little over 16 years ago that I found a missing piece of my heart. Her name is Ashley, and this is a commercial we did for the adoption agency that brought us together!!

Special Exposure Wednesday

My son, Chip, has done a fantastic job of helping Ashley become more independent. When we wanted Ashley to start going to the grocery store to make some purchases, he was the one who designed an easy-to-read shopping list for her. He used actual pictures of the items she wanted to buy, and then put a number beside the item to represent how many of a particular item she needed/wanted. The result was Shopping-List-1.0, which used a printout of the list and a clipboard.

But, Ashley seemed to find carrying the clipboard a little cumbersome. So, Chip then had the idea of using an iPod for the list. It was easy to hold on to (came with a little strap), and the pictures of the items on the list could be easy adjusted to fit her varying vision needs. Of course, it didn't hurt that the iPod was pink!!

I know Chip wants a career in computers, but I think he is missing his calling by not designing support systems for people with disabilities. Maybe he could marry the two things...

Working It!

The whole family is trying really hard to improve our health and wellness, and that includes Ashley. She ADORES walking on the treadmill! She giggles the whole time she is on it. Currently, she is only doing 4 minutes at a time, but she is working hard! I'm very proud of her!

Thank You

In honor of Veteran's Day 2013, I want to say thank you to Grampy, Great Grampy, Dad-Dad, and all the others who have given so selflessly to ensure this life my family is enjoying.


BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION

On Veterans Day, America pauses to honor every service member who has ever worn one of our Nation's uniforms. Each time our country has come under attack, they have risen in her defense. Each time our freedoms have come under assault, they have responded with resolve. Through the generations, their courage and sacrifice have allowed our Republic to flourish. And today, a Nation acknowledges its profound debt of gratitude to the patriots who have kept it whole.

As we pay tribute to our veterans, we are mindful that no ceremony or parade can fully repay that debt. We remember that our obligations endure long after the battle ends, and we make it our mission to give them the respect and care they have earned. When America's veterans return home, they continue to serve our country in new ways, bringing tremendous skills to their communities and to the workforce -- leadership honed while guiding platoons through unbelievable danger, the talent to master cutting-edge technologies, the ability to adapt to unpredictable situations. These men and women should have the chance to power our economic engine, both because their talents demand it and because no one who fights for our country should ever have to fight for a job.

This year, in marking the 60th anniversary of the Korean War Armistice, we resolved that in the United States of America, no war should be forgotten, and no veteran should be overlooked. Let us always remember our wounded, our missing, our fallen, and their families. And as we continue our responsible drawdown from the war in Afghanistan, let us welcome our returning heroes with the support and opportunities they deserve.

Under the most demanding of circumstances and in the most dangerous corners of the earth, America's veterans have served with distinction. With courage, self-sacrifice, and devotion to our Nation and to one another, they represent the American character at its best. On Veterans Day and every day, we celebrate their immeasurable contributions, draw inspiration from their example, and renew our commitment to showing them the fullest support of a grateful Nation.

With respect for and in recognition of the contributions our service members have made to the cause of peace and freedom around the world, the Congress has provided (5 U.S.C. 6103(a)) that November 11 of each year shall be set aside as a legal public holiday to honor our Nation's veterans.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, do hereby proclaim November 11, 2013, as Veterans Day. I encourage all Americans to recognize the valor and sacrifice of our veterans through appropriate public ceremonies and private prayers. I call upon Federal, State, and local officials to display the flag of the United States and to participate in patriotic activities in their communities. I call on all Americans, including civic and fraternal organizations, places of worship, schools, and communities to support this day with commemorative expressions and programs.

IN WITNESS WHEREOF, I have hereunto set my hand this fifth day of November, in the year of our Lord two thousand thirteen, and of the Independence of the United States of America the two hundred and thirty-eighth.

BARACK OBAMA

Really, You Don't Have To Be Perfect

What Happens To Teens That Are Not Adopted?

When most people think about adoption, they imagine a young child, possible a baby, that they could welcome into their home and life. They envision all the things that could be enjoyed with that child as the child grew up, not unlike the similar thoughts that parents have when giving birth to a child. But when I think of adoption, my heart aches for those children in their teens who also do not have a permanent family, teens who in a very short time will be pushed out of the foster care system and into an often cruel world.

Parenting an adopted teen is not easy. But heck, parenting a birth teen isn't easy either. In both cases though, the rewards can definitely outweigh the challenges. I've highlighted below a message from the adoption agency I worked with for my children. Please take a moment to put yourself in Carrie's place and imagine how you would feel. Then please use those feelings to help you decide if you could help a teen in foster care.

"This is the story of Carrie, a hypothetical 17 year old girl in Virginia’s foster care system. Carrie has been in the foster care system since she was 9 years old. Her biological father is in jail and her biological mother suffers from a mental health disorder. Carrie has been in 4 foster homes. In a few months, Carrie turns 18 and though she is available for adoption, she has not been adopted. What will happen to Carrie when she turns 18?

Carrie, while hypothetical, represents the nearly 1,300 children available for adoption in Virginia’s foster care system. Without permanent connections and a family, children who age out of the foster care system are at an increased risk of pregnancy, jail, homelessness and drug use. Knowing that, would you consider becoming a foster or adoptive parent to a child or teen in the foster care system.

“November is National Adoption Month and we want to highlight the great need for parents to adopt or even foster a teenager in the foster care system,” said Greg Peters, CEO of UMFS, the agency that assisted me with the adoption of my children. “Studies have shown that with permanent connections and families, teenagers in foster care are more likely to be successful, contributing members of society once they reach adulthood.”

Becoming a foster or adoptive parent begins with a phone call to UMFS or the agency of your choice. All agencies will provide in-depth training to foster and adoptive parents and continued support as well as access to a social worker 24/7."

Special Exposure Wednesday

Ashley cheered Ronnie as he played in his first wheelchair basketball tournament of the season.  I like to think that it was her cheering that helped the team win both games they played!

 

Who Do You Run 4?

Have you heard of the organization, I Run 4? If not, you definitely should check them out.

Tim Boyle, founder of the I Run 4 organization, describes his mission:

I posted a picture for inspiration for my first official 5K run and one of my facebook friends commented on it. His comment was simple yet profound. He said “you can run for me anytime!”You see my friend was diagnosed with bilateral hip dyspasia. He was told he would never walk again. He found a doctor who was willing to perform a risky and experimental surgery over a period of two years. He spent a year in a body cast and underwent 17 months of gruelling physical therapy five days a week. He DID walk again. The miraculous results were expected to last two to three years. He recovered enough and so strongly he competed in the Olympics… The Special Olympics. You see, my friend Michael Wasserman has Down Syndrome. This “Old Champ” (as his mother, Mary, calls him) stretched out this miracle 24 years and 24 days. He is now in a wheelchair and can no longer run. But that’s not the end of the story… he has been inspiring me for several months with his artwork which he sells in facebook auctions and donates 100% of the proceeds to charity. Last year alone he raised $2500! So I RUN FOR MICHAEL!

I Run 4 pairs runners with children and adults with disabilities. In Tim's words:

The mental and emotional encouragement for both runner and honorary runner is proving to be a whole new level of motivation and awareness. Runners are able to find a whole new sense of purpose in their running while sharing who they are running for and bringing awareness to diseases and disabilities of all types.

Ashley's runner is a wonderful young woman named Maggie Clegg, and Ashley loves getting pictures and messages from Maggie! I urge you to check out both the organization's website and their Facebook page. Then strongly consider signing up to be either a runner or a runner's inspiration! You won't be sorry!

National Adoption Month

November is one of my favorite months! I love Thanksgiving and I get a lot of time off from work. But another of the reasons I love November is that it is National Adoption Month!! And I want to use this month to raise awareness about the urgent need for adoptive families for children in foster care in the United States.

Did you know there are over 100,000 children and youth in foster care nationwide who are waiting for permanent families? Why don't you take a few moments to meet some of the waiting children on the AdoptUSKids website.

And lest you think you need to be perfect to be a perfect parent to a waiting child, think again! Check out this PSA that speaks right to that issue :)

Norm

We are all Norm...

Special Exposure Wednesday

In an attempt to 'beef up' for an upcoming 10K race, Ronnie started strength and conditioning training this week. Looking good!

A Tale of Two Dependencies - Part 2

Yesterday I told you about Ashley and her independent spirit. Ashley is and always has been very stubborn, very strong-willed and very driven. While those qualities can sometimes be hard to live with, they have served her well and helped her make the advances she has.

Then there's Ronnie.

Somewhere along the path of Ronnie's tumultuous past, he had learned to be very dependent. I know that as a young child with significant disabilities, it may have been easier to 'take care' of Ronnie rather than expect him to take care of himself. I also know that his past included many not-so-good situations, and Ronnie himself may have been afraid or at the very least, reluctant, to take the lead in his life. But, if he is going to achieve the level of independence he now says he wants, he's going to have to step up to the plate, and a great deal of that stepping up means attending to his medical needs religiously.

Here's one example. Ronnie must take a lot of medication. His kidney's are failing, his blood pressure is high, and his bladder doesn't work well. As a result, he takes hands full of medicines three times a day. Missing any of those medicines is not an option.

In all our discussions about living independently, Ronnie has been adamant that he can take his meds as he should, and can care for his other personal medical needs as he should. So I have decided several times to let him try. But the attempts have not gone well.

Video games, movies, chatting with girls, and other teenage vices have gotten in the way. Just last week he missed taking his medication multiple times.

For now, Ronnie has stepped back to let me manage his medicines and offer reminders about other medical needs. I know he gets frustrated, and like any 18 year old boy, longs for a life of his own. But somewhere, somehow, he is going to have to understand and accept what a life of his own means. I refuse to let him put his life in danger, and I hope he knows that is because I love him so much.

I want to support his goal of independence, but we need to work out the details, especially as it relates to medical needs.

A Tale of Two Dependencies - Part 1

As both Ashley and Ronnie have stepped into adulthood (they both turned 18 this year), my focus is on helping them become more independent. For a person with severe disabilities becoming more independent can mean many things - cooking, cleaning, advocating for themselves, etc. Both Ashley and Ronnie are still in school, and will be for a few more years, and the school is doing a good job of preparing them for employment. In addition, both have personal care aides who are working hard to instill a sense of independence in them. While this path to becoming more independent can be difficult, and progress is sometimes slow and difficult to see, every so often a new found skill of independence jumps up and high fives me. That happened this past Saturday.

Chip, Ronnie, Ashley and I were headed out to dinner to celebrate Chip's 23rd birthday. I drove to the restaurant, parked in a parking deck, and began the normal wheelchair-unloading, back pack hauling, helping Ashley out of the car routine. But before I could get to Ashley, she had undone her seatbelt, opened the car door, stepped out, steadied herself, stepped away from the door, closed the door, and waited for her wheelchair.

Did you get that? ASHLEY GOT OUT OF THE CAR ALL BY HERSELF!!!

While it may not sound like much to most people, trust me, it is HUGE. If Ashley can get herself out of the car, she can learn to get herself on and off a bus or a disabled transportation van. It means her world will open up, and she won't be dependent on others to always assist her in her travels.

Ashley set one small piece of dependency aside on Saturday, and I can't be any happier or prouder!!!

Tomorrow - Ronnie wants so badly to be independent. But is he doing all he can to get there????

Would This Fulfill Your Life?

This post is probably not going to make me very popular with some folks that live in my little corner of the world. The following video speaks to a partnership between the Richmond ARC and the YMCA. The Richmond ARC, according to its website, "In partnership with families, the Greater Richmond ARC creates life-fulfilling opportunities for individuals with developmental disabilities." The Richmond YMCA states on its website, "The YMCA of Greater Richmond is a resource within your community of men, women and children committed to bringing about lasting personal and social change. With a focus on nurturing the potential of every child and teen, improving the nation's health and well-being and providing opportunities to give back and support neighbors, the Y enables youth, adults, families and communities to be healthy, confident, connected and secure.

Pay particular attention to the last slide on the video:



So, what I saw on the video was a group of gentlemen (or clients, as they are referred to on the video) who appear to have developmental disabilities, gentlemen who are pulling weeds, planting plants, and picking up trash for the privilege (reward?) of being able to play basketball in the YMCA-owned building. I saw an ARC staff person and a YMCA staff person with the group of gentlemen.

On the last slide of the video, I saw the statement, "The Y Values Inclusiveness."

Did you see "inclusiveness" in action during that video? Did you see anyone other than the gentlemen and the two staff persons?

If you are going to try to sell yourself as a purveyor of inclusiveness, you might want to actually model some of that inclusion. Just saying....

Special Exposure Wednesday

Happy Howloween!

Can there be a balance?

How do you handle the unknown? Are you able to live each day not worrying about the future of your child with significant disabilities? If you can - If I could - would we be better or worse off? And would our child be better or worse off if we could set aside the worry?

I read this great blog entry written by a dad to a child with Autism. Mr. Baldwin wrote:

"Now, when people ask me if my son will one day live independently, or have a job, or find a partner, I answer them honestly: “I don’t know”. I no longer pretend that I have any idea what will happen in the next year or decade. And I’m so much happier this way."

He goes on to write:

" I have no idea what’s going to happen, with your child or mine. No one does. The secret, I think, is to embrace this fact, and teach yourself to love the unknown."

Do you think it is easier for this dad to "love the unknown" because his son is still very young? What if his son were approaching 21, being forced to leave school, and not knowing what the future held? What if this dad and his wife were facing serious health concerns and there were no other family members to step in and help care for his son? Does "loving the unknown" mean not worrying, not planning, not advocating, or is it a way to step back and take a much needed breath each day?

Does trying to "love the unknown" make you happier, or make your child happier? Being a super organized, super planning type of person, I don't think it would make me happier. I think I would just worry even more, wondering if I was doing my child an injustice by not trying to figure out what her future might look like. But is all that worrying and planning and organizing taking precious time away today and every day from my child? Can I, and can you, find a balance here - maybe a little less worrying/planning/organizing and a little more loving and just being?

I think I will try that approach for a while and see. (Dang, I just planned my approach to not plan, didn't I?)

Just Plain Confusing

Is Halloween difficult for your child with disabilities?

Halloween has never been one of my favorite celebrations.  I don't like images of the grim reaper or skeletons.  I despise scary things, and have never understood why we celebrate witches, evil spirits and such.  However, with some very clever marketing, it has become a time that most kids look forward to.  But for kids with special needs, it can be a very challenging time.

There are several Internet sources that show you how to make a costume for a child in a wheelchair or a child that uses crutches, but for my kids, just trying to put a costume on was always a challenge.  The sensory aspects were what bothered Ashley.  She never understood putting clothes on top of clothes, or a wig on her head, or a mask on her face.  She never liked makeup and has never eaten candy.  And she certainly never understood walking door to door, holding out a bag, and having strangers put stuff in the bag.  And for a child in a wheelchair, even getting to a neighbor's door was more often than not an impossibility.

Yes, we tried the harvest festivals at churches near us.  But again, many of the activities there - bouncy houses, petting zoos, and carnival games not accessible by a blind child or a child in a wheelchair - meant my children didn't get much out of that activity.

So in recent years, we have just stayed home.  We decorate the house, which the kids do like a lot, and we wait for trick or treaters.  Rather, I wait for trick or treaters.  As much as Ashley didn't understand knocking on neighbor's doors and getting candy, she doesn't understand children knocking on our door for candy.

All in all, Halloween isn't really important to us.  How about you?  What have you done to make the day and activities associated with it accessible to your child with disabilities?

Not Again

Ashley visited the ENT (Ear/Nose/Throat) doctor yesterday. She is a regular visitor there, but still continues to have ear infection after ear infection. The doctor has said her eustachian tubes, which in most children begin to slant down as they grow, never slanted down. So whenever she is sick with a cold or allergies, we can count on an ear infection to follow. To complicate things further, Ashley has a disease which causes tumors to form, and she has had many tumor-like growths in both ears. The doctor is classifying them as cholesteatomas, and he must surgically go in and remove the offending tissue. The trick is to do that without damaging the ear more or causing increased hearing loss.

Ashley has a profound hearing loss in her right ear, and a severe loss in her left. She does use the little bit of hearing that she has very well though. Unfortunately, the cholesteatoma is in her left ear.

Hopefully I will find out a surgery date later today, but geez louise, this kid deserves a break, don't you think?

Special Exposure Wednesday

Yes, I realize that it is Thursday and not Wednesday. Having Monday off for Columbus Day has me all discombobulated...

The government shutdown is not only affecting people, but also butterflies. The butterflies housed for most of the summer at Lewis Ginter Botanical Gardens and who were scheduled to make the trip to the Smithsonian in Washington, DC, must now move to Roanoke, Virginia because the Smithsonian is shut down. At least it is very good news for the folks in Roanoke who now get to enjoy the 'flutterbies'!

An Example of Caring Enough

I want to offer a shout out to a movie theatre near our home and share with you what a wonderful job they are doing to accommodate people with disabilities.

The theatre is called United Artists West Tower Cinemas, and they are part of the Regal Entertainment Group. A few years ago, no cinemas in our area offered closed captioning or other accommodations other than wheelchair seating. Once visibility was raised by the disability community, Regal Entertainment Group was the first to step up to the plate, and West Tower Cinema, in particular, made things right.

West Tower offers the latest in captioning devices for people who are hard of hearing or deaf. They even work for 3D movies. In addition, and the accommodation that has impacted my family the most, is that they offer a free companion ticket for any person that accompanies a person with a disability. So yesterday, Chip, Ronnie, Ashley and I went to see Cloudy With a Chance of Meatball 2. Immediately after Chip requested the closed captioning glasses, the ticket taker radioed the manager, and within a minute, we had the glasses. Also, when paying for the tickets, Chip and I got the free companion tickets when Ronnie and Ashley paid for theirs. This, to me, is huge considering the price of movie tickets these days, and knowing that such an accommodation might get more folks with disabilities to the movies and into the community.

I also noticed that in our particular theatre, the handicapped seating was scattered throughout the theatre. People in wheelchairs have choices and are not just 'parked' in a row in the center of the theatre.

So thank you, West Tower! You are our first choice in movie theatres, and it is my hope that others will follow your lead. You're doing a great job!

Lipstick On A Pig

My state, Virginia, has an ugly history of segregating people with disabilities. Just a couple of years ago, the Justice Department had had enough and told Virginia, via lawsuit, to clean up its act and get people out of institutions. Has there been movement in that direction? I'm not sure, but even if there has been progress towards community inclusion, overall I don't believe prevailing thought on the subject has improved.

For instance, the city of Virginia Beach is patting itself on the back and opening its wallet to welcome a development called Vanguard Landing. According to its website, Vanguard Landing is a place "where exceptional people live extraordinary lives."

What I call Vanguard Landing is lipstick on a pig.

A young lady named Ivy agrees with me. Check out her blog piece on the subject, especially the sections on her beliefs:

I believe in small group homes sprinkled throughout our community.
I believe in strengthening home care support so anybody with a disability can live at home.
I believe everybody should live in their community, near or with their loved ones.
Segregation is not the answer. It never was and never will be.

Ivy is correct, and the City of Virginia Beach needs to listen to her and others of us who have a real stake in the future of people with different abilities. Putting lipstick on a pig does not change the fact that it is a pig.

Around The 'Net

How come I've never heard of this organization before - Kids Included Together? Have any of you heard of them or had any dealings with them? I saw a commercial on Netflix last night with this video:

'

**********

This story has been floating around Facebook for a while now, but I still love it as much as the first time I saw it! See The 5 Kick-Ass Women This Mom Dressed Her Daughter As Instead Of A Disney Princess

**********

This is another one of those things that I don't know how I missed. Have you seen this movie, The Hammer?




**********

Have you heard of D-PAN, the Deaf Professional Arts Network? I've included some of their music videos on this blog previously, but they have so much more to offer. I suggest you take a few minutes and wander around their website.

Special Exposure Wednesday

So, what's your Halloween costume????

Derek

I started watching a show named DEREK on Netflix last week, and I am finding it quite intriquing. Not a fan of Ricky Gervais, and knowing that the title character was someone with a disability, I expected to be offended, angered, or at least bored by the show. But I have really enjoyed it.

Here are some of the reviews:

From the Washington Post:
Ricky Gervais writes, directs and stars in this tenderhearted ensemble mockumentary about an enthusiastic employee at the Broad Hill retirement home. The show is a risk for Gervais, who combs his hair over and juts his jaw into an underbite in order to play the title character; we are to understand that Derek is not quite right but none of the words for it seem apt. (Simple? Special? Mentally disabled? Autistic?)

It’s ingenious that “Derek” is less preoccupied with a diagnosis and more focused on the minuscule but meaningful ways that Derek interacts with his elderly charges. The only problem is an overall feeling of hesi­ta­tion — on Gervais’s part, but also on his audience’s. You’re so braced for something to snap, for the comedy to stray into no-no land, that it’s hard to relax and appreciate “Derek’s” emotional intent.

And from vulture.com:
Ricky Gervais's retirement-home sitcom Derek is no masterpiece. Its Office-style pseudo-documentary gimmicks seem even less organic here than in most shows of this type, and the improv is hit-and-miss, as improv usually is. But this Netflix series is worth seeing, if only to be able to have an opinion on its peculiar mix of tones, and to decide whether you think it's sincere or cloyingly manipulative. Derek is engaging and sometimes very funny. Parts of it are ostentatiously sentimental, verging on gooey.

That last aspect is the most intriguing. Based on his career highlights to date, most of which are geared toward taking the piss out of everything, I never thought I'd see a Gervais project that spent most of its screen time observing residents of an elder care facility while "bittersweet twilight of life" piano music toodles on the soundtrack. But that's what Derek does when it's not focusing on the retirement home staff, most of whom are melancholy or prematurely lost souls, or milking all the laughs it can from community events, including a cabaret show and a trip to the beach.

But my favorite review is from the NY Times:
Derek is different — slack-jawed, anxious, hair plastered to his forehead, eyes darting to the mock-documentary camera. A visiting bureaucrat asks if he’s autistic, a question met with great indignation by the staff and never answered.

And that’s the point, really: Derek’s affliction is the world, for which he is too fragile and too good. His goodness is so frequently insisted upon that you might think you were watching some sort of clever, double-blind satire, if “Derek” weren’t so consistently, numbingly sincere.

I wasn't offended, I didn't get angry and I wasn't bored. If I had any suggestion, it would be to leave out the character, Kev, who does nothing but make crude penis jokes in every show. I think the show could be every bit as good without that character in it.

Though it is sometimes difficult to watch, I highly recommend you give it a chance!

One More Step

My sweet Ashley took another step towards independence this past weekend.  She opened a checking account - an account that is all hers, not shared with anyone else, with only her name attached to it.  She will now manage her own money (with some assistance as needed), but spending decisions will be hers.

I commend the folks at the Virginia Credit Union for being so helpful and accommodating.  They didn't ignore her disabilities, but they saw her - as a person, as a client, as a new credit union member.  The person that helped us spoke directly to Ashley, not to me, and understood that I would need to interpret into sign language.  She understood that Ashley needed some assistance finding the places to sign her name, and that her signature would look a lot like a doctor's!  When we were finished, she thanked Ashley and shook her hand.  Just like any other customer....

Ashley took another step into her future, and she did so proudly!

RIP Professor Nemeth

"For example, when you say “x to the n power,” the phrase “to the” means “begin a superscript,” and the word “power” means “return to the baseline.” So in my Braille code I created symbols that mean “begin superscript” and “return to the baseline.” My personal code for Braille mathematics began to evolve. I used it for my work in calculus and statistics."

Abraham Nemeth, the creator of a Braille system for math and science, has passed away at the age of 94.

Check out this article from The Atlantic for the story of how Professor Nemeth's code came to be, and why it still exists today.

Disability History and Awareness Month

October is Disability History and Awareness Month in Virginia. How will you celebrate? These incredible, impassioned young people can give you a few ideas...

Special Exposure Wednesday

We all need a little alone time occasionally....