Friday, December 20, 2013

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!!

Thursday, December 19, 2013

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 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?)

Wednesday, December 18, 2013

Special Exposure Wednesday

A boy and his dogs....

Tuesday, December 17, 2013

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?

Monday, December 16, 2013

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!

Friday, December 13, 2013

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.

Thursday, December 12, 2013

"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!!

Wednesday, December 11, 2013

Tuesday, December 10, 2013

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!

Monday, December 9, 2013

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....

Friday, December 6, 2013

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!

Thursday, December 5, 2013

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.

Wednesday, December 4, 2013

Special Exposure Wednesday

Someone seems very proud of his muscles!

Tuesday, December 3, 2013

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?

Monday, December 2, 2013

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!!