Encouragement: God is not Finished With Me– or the Elevator Yet...

Welcome Back Readers~

I’m sorry I let another two months go by without posting anything. But things have been quite hectic around here. Let me give you a quick overview before getting into the main topic of today’s blog.

1. My 41st birthday-It was pretty quiet around here for my birthday. Except for a few surprises of birthday balloons and a bouquet of wildflowers chosen by my dad, there were no surprises. Since my mother took care of my nieces for a week, we all decided to go to Olive Garden; it was pretty nice. Elizabeth even went out of her way to ask the waiter to “Decorate” my dessert with a Happy Birthday label with candy confetti. It was kind of cute.

   
   
   

2. Getting The Vaccine- In several posts, I have debated on getting the vaccine. Well, I finally got on the list and waited for an email. In April, they emailed with my opportunity to get the vaccine. I took it. At that time, though, they only gave it in specific locations; this time, it was a college. I received Moderma. The first shot wasn’t too bad with just an achy arm; the second dose (three weeks later) was what did me in. I didn’t sleep well that night, and eventually, I forced myself to get up. Fighting congestion and body aches, I tried to get something done; But it was useless. It wasn’t until my assistant suggested getting Pedialyte and Gatorade and we got it that I started feeling better. I know it sounds like a weird concoction, but it works!

3. Elevator Construction- If you’ve been following me long enough, you’ve probably heard me rant about my family’s troubles trying to get an elevator installed in our house. For those of you that are new, I will spare you the details except to say they are finally making progress. But it’s been a tough road full of confusion as well as disappointment. Here are a few pictures highlighting the making of the shaft for the elevator.

This brings me to the main purpose of this post. Wherever you are, whatever you are doing, God sees you. Just like the elevator, you may not see changes immediately. But he is a master at working behind the scenes. Tauren Wells' song "God's Not Done with You" speaks to this issue of feeling incomplete and useless when it comes to being a part of God's ministry team. Thankfully, Jesus can see past all of our insecurities and see who we were meant to be. To play the YouTube of "God's Not Done With You," it can be accessed here: https://www.youtube.com/watch?v=_6-Pky8KFoQ

Camp Echoing Hills

Welcome Back Readers ~

My dad always tells me how blessed I should be living in the technological age that I am, and having a disability. And I come to believe that more now than ever. You see, today I watched Thriving With Cerebral Palsy:The Cordell Brown Story. This documentary tells the story of Cordell Brown and the difficulties he had growing up with a disability. Despite having parents that instilled a "can-do" attitude within him, Cordell still struggled to accept his disability on a daily basis. That is until he found Jesus. With his newfound faith, he tried his best to integrate himself into "normal" society with little success- because of the stereotypes that people had of CP at the time. Until a friend named Bob allowed him to volunteer as a driver for his Bible camp; from there he worked his way up into higher level jobs in the camp. It was during his work at the camp that Bob mentioned the idea of starting a  camp for people with disabilities on his family land. As always, his parents were supportive. It was then that Camp Echoing Hills was born..

For more information on Cordell's story or Echoing Hills, please go to:

https://www.ehvi.org/

https://www.facebook.com/echoinghills/

https://www.coshoctontribune.com/story/news/local/2017/07/20/camp-echoing-hills-50-years-serving-developmentally-disabled-clients/468293001/

Consumer Chaos: My Experience with Consumer- Directed Care So Far:

Dear Readers~

Happy New Year to my readers both new and old. As I'm writing this, I can hardly believe it's 2019. Where did the last year go? Although I have been really busy with my YouTube channel and getting consumer-directed care all squared away, my blog has kind of taken a backseat. In all honesty, I had no idea what I was getting into when I decided to embark on this new adventure of directing my own care.

True, I've had my share of ups and downs with agency-directed care- including those who could not understand English enough to take my direction and almost burnt the house down or those who just had their problems getting paid by the agency on a timely basis and therefore quit on me several times a month. You name it I've probably dealt with it. Still, agencies had their pick of personal assistance already vetted and could send them to me within a couple of weeks.

Now, I'm stuck doing the entire process on my own. Granted, I do have a consumer facilitator offering me suggestions on where to put my job openings out there, and he is great. One of the places to locate caregivers is mysupport.com. This site basically allows consumers to search for personal care assistants based on their needs and hours. But if I'm being honest it sometimes feels like I'm putting myself out there on a dating site; if it doesn't have enough bells and whistles on it, it doesn't get noticed. In the meantime, my dad and mom are the main caregivers and my dad has even gone so far as to be hired by me through a website so that I don't lose my hours through Medicaid. 

The problem is that the hiring process is so long and drawn out; it's difficult to have to mail papers back and forth to make sure my dad is vetted. I mean, he's my dad. I know him and trust him with my life!

I have even gone as far as putting my job openings on out-of-the-box websites such as care.com. The difficulty with these websites is that most people want more money for their time and it is not covered. I mean I don't blame them, taking care of a person with special needs is hard work and takes dedication. But paying out of pocket is difficult and not a good long-term solution.

Still, that's what I'm doing at the moment paying out-of-pocket for someone to come twice a week during the day. My parents need a break.

I pray as I continue along this journey that the right person comes along- someone who cares about people and who loves their job. I know God will put the right person in my life at the right time. In the meantime I remain patient, knowing that everyone who comes in contact with me does so for a reason- even if they don't know it.

I would appreciate all the prayers possible and positive vibes as I don't know what the new year will bring. But God does... And that's enough!

Debbie

PS. Feel free to share your personal care journey in the comments below. I would appreciate knowing I'm not alone in the process!

The Angels of Concordia -Guest Post by Debbie's Dad

The Angels of Concordia

Guest Thoughts by Debbie’s Dad

The Bible clearly speaks of angels, the created beings that carry out missions for the LORD on earth. Few have seen angels, but many are recorded in Scripture. In both the Hebrew and Greek, the words that we translate as angels have the meaning messenger - a messenger from God.

Angels In the Old Testament

In Genesis 18 Abraham conversed with men (angels) that accompanied the LORD. At the peak of Israel’s’ kingdom, the Psalms recorded the practical theology of trusting the Lord and described the angel of the LORD as a protector (34:7). Other Psalms described how angels are given charge to watch over us (91:11) even as they praise the Lord (103:20). 

As the nation of Israel divided and finally fell, the prophets provided more insight into the work of angels. The prophets saw angels as “Seraphim” (Isaiah 6:2) and “cherubim” (Ezekiel 10:1-3). Daniel, while in captivity in Babylon, actually named two angels who came to help him: Gabriel and Michael (9:20-27 and 10:13, respectively).   Similarly, a man, identified as an angel came to help Zechariah understand the visions he was seeing (cf. Zech. 1: 7-9).

The Angels and the Messiah

After a long period of silence from God, the people returned to a devastated and conquered the land. The most well-known messenger is the angel Gabriel who informed Mary that she would give birth to Israel’s Messiah – “the king of Jacob’s people forever” (Luke 1: 26-38).  It was an angel that announced Jesus’ birth to the shepherds outside of Bethlehem (Luke 2:8-15), then angels warned Joseph to flee to Egypt and then to return when Herod had died and the danger had passed (Matt. 2:13-15 and 19-21). Angels ministered to Jesus at the beginning of His ministry (Mark 1:13) and rolled away the stone after his resurrection, remaining at the tomb to greet His followers (Matt. 28:1-2 and John 20:12). Jesus acknowledged the role of angels (e.g. Matt 22:30; 13:39; 25:31) as serving Him. Angles similarly ministered to the apostles in their ministry opening prison doors (Acts 5 and 12), providing ministry guidance (Acts 8:26 and 10:1-7) and encouragement in perilous times (Acts 27:23-25).

In all of these cases, the angels appeared as people, sent from God to give messages: to warn,  to explain, to encourage, and to protect.

My Angelic Encounter

Back in the period 2003-2006 when Debbie attended Concordia University in Ann Arbor, I actually saw some angels at work: warning, explaining, encouraging and protecting!

Before you declare me a heretic, let me explain. Debbie was accepted to Concordia in the fall semester of 2003 after 2 years of hard work at Washtenaw Community College. She was able to transfer 51 credits and began as a sophomore. On paper, all was well academically. But physically, it seemed a mission impossible for her to live on campus and succeed as a student. Being quadriplegic, she needed caregivers to get here up in the morning and then put her to bed at night; that could work. But how could she make it through the day? – For three years!  The Concordia staff was terrific, charting her path to classes and then walking with my wife and me across every path on campus to make sure they could be traversed by a wheelchair. Every ramp and every door threshold was checked.  Out toilet seat was tested on the David Dorm toilet.

But the daytime routine was the killer- ominous, overwhelming effectively impossible.  How could Debbie …

• There Be fed at breakfast, lunch, and dinner??
• Handle loading and unloading her backpack/travel to and from classes throughout the day?
• Open and close the pages of her books/take notes in classes to help her keep up?
• Study at night, turn pages in books/ practice foreign language, look at note card, etc.?

Indeed it was not possible ... but when my wife, Debbie and I explored the David Dorm where she might live, angels appeared.  Appearing as friendly college girls, they came alongside and asked us what we were doing. We explained and like angels do, they warned us of things we had not thought about, explained how others could help Debbie through the day, and encouraged us that it would work.  And soon, they assembled an entire army of the most wonderful young women we could imagine. The army grew and grew and they spent the next 3 years encouraging and protecting Debbie – enabling her to complete her degree. 

A few of "Angels" of Concordia with Debbie in 2006

Being and Angel to Others

Sure I know these young women were not the heavenly being like the patriarchs, prophets, and apostles saw, but they sure behaved as if they were sent by the LORD. They played the role of angels, providing us the message that what seemed impossible, was made possible by their sacrifice of time and energy to be Debbie’s hands and feet.  To me, they will always be angelic. And they set a wonderful example for me to follow. They glorified God by their Christ-like lives …

Encourage the people who are afraid. Help those who are weak. Be patient with every person. 1 Thessalonians 5:14b (ICB)

Debbie earned her BA degree in January 2007, enabled by that platoon of wonderful young women in David Dorm and across campus. Many of them still keep in touch with Debbie online, pray for her and, as angels always do, encourage her from afar.   May the Lord send to each of us someone to whom we may serve as an angel, just like that.

My Experiences Aboard the Ruby Princess and in Alaska!

Dear Readers,

First off, let me begin this post by saying how happy I am to be back on dry land. No matter how much fun I had with my extended family and parents celebrating their 50th anniversary nothing compares to the feeling of being back at home knowing that your wheelchair arrived in one piece. Those that have traveled on airplanes will no what I'm saying - especially once I show pictures of how my wheelchair arrived in Seattle. But let me start from the beginning.

After months of planning my mother had finally settled on taking the seven of us (brother and sister-in-law family included) to Alaska for their 50th anniversary. Congratulations again to mom and dad. I can only hope to have the kind of relationship you guys have - one of faith and commitment - that has lasted this long. In the beginning, we debated on taking my new wheelchair, concerned that it would get damaged in transport. You see I've traveled by plane several times before and have seen how they tried to carry my other wheelchair to the conveyor belt. Yes, they've actually done that. So you can imagine our concern about damaging the head control. But still, I was determined to be somewhat independent during this trip. So my dad took every precaution- learning how to dismantle the head control and joystick before handing it over to the airlines to board. He even attached a box with the parts on the wheelchair so they wouldn't get lost in transport on our way to Seattle. Despite our preparations, this is how the wheelchair arrived.

Don't get me wrong, everything turned out wonderful and we were able to fix it when we arrived in Seattle where we were to board the next day; I'm just letting giving people a realistic view of what can and often does happen to wheelchairs at the airport. The airline we used were very patient and apologetic as they stood watching my brother and dad put it back together again. It's just that people using wheelchairs should be ready for anything after traveling by airplane. Once we collected our luggage from baggage claim, we were about to head to the hotel for the night when we were met by a Princess representative. We explained we were supposed to get a transport from the airport to the dock to go aboard ship tomorrow; she took our information and made the transportation even easier for us arranging transportation from the airport to our hotel that day as well as arranging transport from the hotel to the dock the very next day- eliminating one less trip for our numerous bags.

Onboard, mom had reserved two suites for us - one accessible one for us and one regular for my brother and sister-in-law as well as my nieces. They both were pretty much identical except for the amount of closet space (I assume the lack of closet room in the other suite was used to accommodate and make extra room in our suite. Sorry guys!) and the accessible bathroom  Otherwise, we both had a balcony. I was surprised by this because I would've thought they would be afraid of possible accidents. But no, there was a little ramp inside the door that came out every time the balcony door was open. Granted I made sure that my parents watched me every time I went over it just in case  (see the pictures below)

Although the suites were accessible, I still had a lot of difficulties getting around the ship. This is for two major reasons.

1. The hallways
2. The elevators

In most cases, the hallways are narrow to the suites not leaving much space for a wheelchair let alone other people to walk by. In terms of the elevators, I have two complaints. First, it is difficult to get on one.  Now I realize that this is probably because Princess cruises are larger and have room for more passengers, but that still doesn't account for the quickly closing doors. After all, elevators are primarily for those who are unable to walk up and down stairs. Right? I was fortunate to have someone with me at all times to make sure my chair did not get caught in the doors. But there were some very close calls at times.

Despite the difficulties, I had a marvelous time going around the ship and out to the ports. The first evening everyone and I went to go see a musical production called "Magic To Do" in the Princess Theater. Exclusively for Princess cruises, this musical featured a compilation of songs from Stephen Schwartz. Some of these included Pippin, Godspell and many more. We also made quick friends with Ashley, Monica, George, and Joe. Their family and ours developed a deep connection when they realized I also had CP like their daughter, Ashley.  (If that weren't enough for coincidences, they too had purchased a wheelchair controlled by a head- array.) Since Ashley is only 15, they were happy to see the possibilities ahead for their daughter...

On our first day at sea, the family met for breakfast as my nieces geared up for their time in their age-appropriate activities. Since they weren't allowed around the ship on their own, Elizabeth and Rebecca and I ventured out to get ice cream on our own several times. This was really exciting for me since it allowed me to practice my driving and see how helpful my nieces might be in the future. Elizabeth and Rebekah are really growing up right before my eyes.

On our first port of call (Juneau, Alaska) we disembarked with hopes of taking the tramway overlooking the mountains. But that was not meant to be as passengers who booked the excursion were stuck on the mountain do to the tram not working and they were unable to find a way down until hours later.. Fortunately, Monica and Joe were able to enjoy the view before it broke down; unfortunately,, though, we had to stand in line and wait for a refund. Even so, we made the best out of a situation by meeting and talking to a real Alaskan born Indian from a tribe (I believe it was he was one of the only Alaskan Cliniko Indians in Alaska). I also got my very first Alaskan souvenir from the trip.

On Tuesday we arrived in Skagway Alaska (our second port of call), where we prepared to board the   White Pass and Yukon Railway. This is a four- hour train ride into the mountains via the White Pass. While Ashley and I enjoyed the view from the car, our parents were free to watch from the open platform between the two cars. Locally, I was able to raise myself up to look out through the windows and see more of the views. At the top of the mountains, we briefly passed through Canada (we didn't need our passports though) and later always down. See some of the pictures below.

Wednesday was relaxing day on board as we moved through Glacier Bay National Park. Park Rangers climbed aboard in the early morning hours to answer any questions the passengers may have had; I even got my picture taken with one of them. Below is a picture of my family and I took at the Margerie Glacier.

We embarked on our third port of call on Thursday in Ketchikan Alaska. While my nieces were interested in seeing if there were any seals in the river, I found myself occupied shopping. It was in Ketchikan where I found my final souvenir for Alaska a purple necklace which I paid for myself. When we boarded the Ruby Princess cruise ship once more, we found a surprise at our door- an exclusive invitation for all seven of us to dine at the Share restaurant- an exclusive restaurant of six-course creations by a famous cook.

Friday was my parents 50th anniversary as well as our final day at sea. We spent the morning drinking coffee on our balcony while trying to see if we could spot any whales at the same time. Our friend, Monica brought over some wine she brought from California to celebrate and we had a girls time. For once, I actually enjoyed the sweet wine (which I later found out was Stella Rose.).

 Since my brother and sister-in-law were out on excursions with Elizabeth and Rebekah, we celebrated my parent's anniversary just the three of us in our usual dining room. It was neat because the waiters actually sang happy anniversary (song sang to the tune of "Happy Birthday") and videotaped the whole thing. Later we disembarked with Ashley's family and explored Victoria, British Columbia, Canada together. All in all, it was an amazing cruise with wonderful weather and amazing memories--full of amazing memories and brand-new friendships. Someone told us that this was the best weather they've had out of the 21 cruises. Most of the passengers were unable to view the glaciers because of the fog or rainy weather, but we had a wonderful clear view. 

My Last Days - Season 3 Trailer

Welcome Back Readers~

I heard about "My Last Days" when asking Alexa to turn on my lights one morning. While the premise of  this show may seem morbid at first; it's really not. This show features real people dealing with terminal diagnoses in very unique ways. Rather than focusing on their death, these people concentrate on living every day as if it was their last. This allows them to follow their passion with no apologies and excuses. Take for example choreographer Miranda Davis, who is just 33 and expected to die by the age of 40; this is after her seventh diagnosis of a series of complex and rare disorder.

 Then there is Anthony Carbajal, who was diagnosed with ALS at the age of 26; unfortunately, the diagnosis runs in the family- his mom and grandma both had it in their lives. But he hasn't allowed the diagnosis  stop him from pursuing his dreams of photography. He has his camera attached to his wheelchair.

"This wheelchair is making me a better photographer. In a weird way, I'm grateful for that. I started paying attention to the present moment.." he said

This medical docudrama airs on Fridays at 8 PM on the CW.

For more information on this series, please go to:

https://www.broadwayworld.com/bwwtv/article/MY-LAST-DAYS-An-Uplifting-Docuseries-Created-by-JANE-THE-VIRGIN-Star-Justin-Baldoni-Returns-to-The-CW-Today-20180524

http://variety.com/2016/tv/reviews/tv-review-my-last-days-justin-baldoni-1201838783/

My Experience Racing at the Semper Fi 5K With The Help of Ainsley's Angels

Dear Readers,

If you are familiar with my blog, you may remember how I first mentioned my encounter with Ainsley's Angels at the 2016 Ability Expo in Virginia. As well as offering information, they allowed me to "test ride," one of their actual chairs. While my runner and I took a short jog around the building, I felt free. If you've been in a wheelchair for a considerable amount of time, you may understand what I mean- always having something up against your back to support you. Though I was supported in the race chair, I was able to feel the air against my face and back. For just a moment, I felt like a runner with the wind of against my face; albeit, my partner. I was borrowing my partner's legs. But I wasn't just a person with a disability anymore; I wanted more of this feeling..

So I signed up on a email list to be notified about upcoming races

It wasn't until this April that the races happened to be in our area. It was then that I contacted the event organizer for our area (Katy). Unfortunately, she was unable to get a runner for this race, but she would definitely have a chair for the next race. In the meantime, she wanted to learn more about me and my disability to properly  match me with a team. My dad emailed her the specifics of my disability as well as other info.

Now we waited.

Finally, Katy emailed us back and said there was a chair available for me in the next race. She said it would be slightly more tilted than the other chair I had been in so I would be able to see more of the race. I was ecstatic. But how was I going to record the race for my friends who were unable to attend. It was then that I looked into getting a GoPro; for those of you unfamiliar with GoPro, this is a very small camera able to record or take pictures of action events, such as surfing, etc.. It can be attached to one's body and left running to record the actual event itself. What's unique about the GoPro is that it can be remotely controlled by a cell phone using Bluetooth interface. In other words, those that are disabled and unable to press buttons on a camera can control a camera just as easily through a app.

But that's another story for another time.

So it was a go. I was set to race in the Semper Fi 5K. This race was in an effort to raise money for a fund in the same name, which supports those who are wounded during the war and need help adjusting when they return home as a civilian. So, on Saturday, my parents and I got up at 5 AM in order to drive and meet the group at East Potomac Park by 715 a.m. In all there were 12 teams, one for each disabled person, and 22 runners that pushed the racing chairs. My chair had a flag that said "Team Debbie" and my team runners were Amy and Jackie. Amy is a schoolteacher and Jackie is a Intel analyst and retired from the Army. Before the race started, every chair was tested and taken for a test run. They secured me with a chest strap and I was ready to go. As it turned out, this was Jackie's first race with the Angels as well as mine; we both had to get used to how Phoenix (our chair) moved as well as felt. When everyone arrived, we decided to take a picture around the Reflection Pool by the Lincoln Memorial. (See below)

As our team arrived at the starting line, I was filled with anticipation. Would I get that feeling again? Would I temporarily forget about my spasms and remember who I was doing this for? Not only to feel that freedom without my wheelchair, but to support those wounded in war. After all, they sometimes find themselves in similar circumstances- in wheelchairs, wearing prosthetics and coping with their new circumstances. As I listened to the Star-Spangled banner, I thought about this and became deeply moved. Thanks to their sacrifice, I live in a country where I have my freedom. I'm not just talking about physical freedom here, but religious freedom as well.

But I digress.

I don't remember if there was a gun to signal the beginning of the race, but next thing I know we were off. Amy decided to run first pushing my wheelchair along as Jackie ran beside me. A gentle breeze kept me cool as the pavement pounded beneath my chair; even though I was sitting down, I felt like I was running. I tried my best to take in the scenery, but we were going pretty. During the race, I heard an occasional spectator yell "Go Team Debbie" as we sped past. Occasionally, I had the opportunity to speak to Jackie about my future plans as she ran beside me. (see below)

At around Mile #1, a motorcycle policeman passed us; they were there with Park officials to make sure all the runners were safe.I believe it was then that Jackie took over for Amy and Amy walked beside me. I was quiet for a bit as I tried to take in the scenery around me. As we reached the turn around point, I was surprised as a man with racing prostatics sped past. "That's who I'm doing this for people like him- injured in war." I thought. Whoever this man was, he was not letting anything stop them.

Reaching the final lap, Amy and Jackie decided to swap over bridge. (My apologies if you guys swapped more and I didn't notice. I was just trying to enjoy the scenery and take it all in). Another thing I really liked about racing with the Angels is that fellow racers didn't look at me as someone with a disability, they looked at me as a fellow runner and cheered me on! There was a camaraderie there. We crossed the finish line in record time about 25 minutes as the song "The Eye of the Tiger" played. (See below)

As we waited for the others to finish, I took a lot of pictures to memorialize my first race. I got my team's phone numbers and email addresses so that I would be able to keep contact with them in the future. Not only did I have the opportunity to participate in my first 5K race, but I have developed so many friends in the process. The first being that of Katy (the event coordinator); without her, none of this would have been possible. Thank you Katy for your tireless work on our behalf making sure that we have every opportunity to participate and gain a new sense of freedom in these events. (See below)

Another big round of applause goes to the many volunteers that offer to race in these events. Without them, people like me would not be able to participate in these events. To my team (Amy and Jackie), thanks for letting me borrow your legs for the day; you will never know what it meant to me being able to feel that air in my face as you raced your hearts out. For once, I didn't have to worry about being seen as a person in a wheelchair, I was just a person. Even though we just met, you took time to get to know me and treated me like a friend. Your friendship means the world to me.I know I can only speak on my experience, but I'm sure other participants may have similar experiences that they can't always express. Just know we appreciate your time and effort trying to make it the best experience for all of us.

Thank you everyone! 

See What's Coming Up On MY LITTLE LIFE

Welcome Back Readers~

TLC is trying to broaden its audience with the addition of a new reality series featuring a number of people with different varieties of dwarfism. Each are at different stages in their life; some are looking to move out and assert their independence like 21-year-old Timberlee and her daughter while others are looking for love and the possibility of motherhood. This series follows each one of their journeys as they struggle to grow and accomplish their dreams. The show airs on Tuesdays at 10 p.m.

 For more information, please go to:
https://www.tlc.com/tv-shows/my-little-life/

Carly's Café - Experience Autism Through Carly's Eyes

Welcome Back Readers~

Not many people really know what it's like in the   mind of someone with autism, but this YouTube gives you a glimpse into their world. Thanks to medical and technological advances, some are able to break through the wall to communicate with family and friends- like Carly. Being  nonverbal, she uses a computer to put her thoughts down on paper; her intellectual prowess and comedic timing inspired her to create a Internet channel interviewing celebrities. .

 For more information about Carly and Carly's Internet talk Speechless, go to:

https://www.youtube.com/channel/UCeKKQlMB1NeOLN31_CSJFRQ?sub_confirmation=1

This Time,Next Year- Inspirational Transformations Throughout One Year

Dear Readers,

Last night I watched an interesting premiere on lifetime that encapsulated people's personal transformations throughout one year into a matter of minutes. From a disabled man injured in a car accident promising to walk again to a woman's dream of becoming a bodybuilder, As the host of This Time Next Year,Cat Deely follows them on their journey to make their dreams come true. The Show airs on Lifetime Tuesdays at 10 p.m.

On a personal note, I was deeply touched by story of Derrick Strong. This amazing young man was always interested in taking care of others as aa nurses aide; until a tragic accident left him paralyzed and in a wheelchair. Doctors said he would never walk again, but he was determined with the help of family and friends to walk by himself by this time next year. During the montage which showed his journey, he encountered at another incredible obstacle- he was involved in another accident on his way from therapy. That still did not stop him though and he was able to walk with the assistance of a Walker and able to hug Cat as he walked through the "Next Year" doors. His amazing testimony of "The Impossible is Possible with God" left the audience in tears.

Try as I might, I was unable to find any more articles about this inspirational man. I'm not sure that he knows how much his five minute interview changed the minds of millions of  people across the world- including myself. I wish him the best in all his future endeavors and hope he continues to walk tall whatever life brings him.

My Favorite Holiday Assistive Technology

Welcome Back Readers~

I hope everyone enjoyed their holiday with family and friends; I certainly did. Some of my favorite gifts included a Ultimate Harmony remote which allows me to control several devices such as my Amazon fire and my TiVo all through my Alexa simply by using my voice. For example, I can say, "go to 240" and it switch the channel as requested. I can also turn up the volume of the TV by simply saying, "Turn up the volume." In order to switch to the Amazon fire,I, I simply ask Alexa to "turn on Fire TV,"; I don't have to ask my personal assistant to switch inputs because it does so automatically
This remote does require some programming experience in order to make the devices work together to complete complex demands.

For more information on harmony products, please go to:

https://www.logitech.com/en-us/harmony-universal-remotes
https://www.cnet.com/how-to/how-to-logitech-harmony-amazon-alexa-echo/

The Nest thermostat was my next favorite present; this assistive technology works to with the app as well as Alexa to control your thermostat. It also has the ability to recognize when you are away from the home and lower the temperature: when  you return, it will increase to a preset temperature.

For more information on Nest technology, please go to:

https://nest.com/thermostats/nest-learning-thermostat/overview/
https://www.cnet.com/how-to/tips-for-your-new-nest-thermostat/

The last assistive technology is clearly not yet; but Toyota is doing its best to make the lives of quadriplegics a whole lot better with the introduction of a personal assistant robot that retrieves drinks

Assistancee Dog Issue goes straight to Supreme Court

Welcome Back Readers~

I was watching the news last week and came across a interesting story; it involved a young girl with CP w(cerebral palsy) and her struggle to gain independence in school the help of her assistance dog Wonder. In 2009, Ehlena Fry and her goldendoodle Wonder were first paired together during training in Ohio; this opportunity made possible through a $13,000 fundraiser held by family and friends. The trouble began when they tried to transition Wonder to assist her during school hours .at first, the school agreed to a 30 day trial.This didn't work out as planned, however , and was marked with one obstacle after another. Eventually, the Fry family decided to change middle school.

Still, they believe the other school needs to be held accountable according to the Americans with Disabilities Act .

For more information on this story, please go to: 

Http://www.npr.org/2016/10/31/499876610/a-girl-and-her-service-dog-head-to-the-supreme-court

Looking Back at the Last Four Years of Independence...

Dear Readers,

 It is with mixed emotions that I finally come to terms with moving out of my apartment next week.. That's right folks! After about four years of living independently, I will be moving back in with my parents until they figure out where they plan on retiring. It is  not a  decision  I  (or should  I say we) came to easily, but the  financial  burden was  getting to  a bit  much. For  those living in Virginia, you  understand exactly where I am coming from.

Still, living  independently is something that I would encourage  everyone  with a disability to  embark upon.  Not only does it  teach people what they are  truly capable of, but give parents the benefit of knowing what it feels like to  let go  without the  fear of ultimate failure. In other words, they are still around to teach   them when necessary while  giving  their children the freedom to make mistakes...

Let's take a look back at my journey. When we first moved to Virginia in 2008, I found it difficult to make friends. My family and I spent several months settling in and trying to find a church we felt comfortable with. After looking at several prospects, we finally decided on a church whose main goal was teaching straight from the Bible, verse by verse. It was there that I met Sadie and we developed a friendship. Beginning December 4, 2011, we discussed our dreams of living independently and toyed with the idea of becoming roommates. Like myself, Sadie was determined to spread her wings and fly! Looking back, I  feel as if this was God's plan, giving us the opportunity to prove our capabilities to our parents. My parents weren't exactly comfortable with the idea of me living by myself, so this was a logical compromise. That  way, they knew someone would be there in in the evenings (as well as at night) in case of emergencies.

In January 2012, we finally signed a one-year lease for a two bedroom apartment;its location was close enough to my parents that they could come help when needed. Little by  little we begin to make that apartment our home, adding sparks of color (and accent walls!) Along the way I learned important lessons about cooperation and compromise.  At first, I spent a majority of my time working on this  blog; never giving up hope that I would find a job. Occasionally, we would have friends from church over for movie nights and to celebrate birthday parties. We both thrived until unforeseen difficulties caused my roommate to have to move out. This left me reeling, wondering how all of this fell into God's plan. But you know what they say- When God closes a door, he opens a window. It was  around that time (or earlier)  that I was hired to write blogs on website accessibility. My parents were still unsure about my ability to live on my own but figured since I was financially stable, I should at least finish the lease.

I continued to work for the remainder of the lease, but  felt the apartment  was a little too big for  one person. For a while, I  wasn't sure whether a one bedroom apartment would open up and I have to move back in one my parents; sometime during Christmas break I was notified that one had  became available- an early Christmas present. So on February 19, 2013, I began  transferring my  belongings from one apartment to the next with the help of some friends from church. Although I had lived independently before, it was an exhilarating feeling knowing I was completely on my own. I was responsible for paying the bills as well as making the place my very own. In other words, I was now a part of the typical workforce, getting up early in order to telework several  hours a day.. In the process, I dealt  with my share of personal assistant problems; this reiterated the value of advocacy on a daily basis and making sure my voice is heard.

All in all it has been amazing five years; during which I've gained the self-confidence of knowing what I am truly capable of. It's been a roller coaster of emotions but that's just a part of life;as my college pastor used to say, "Exp|ct the unexpected." While moving back sometimes feels like a step backwards for me, I have to believe God has something bigger in store for my future- and this was just a glimpse into what is humanly possible..I haven't given up  hope that I will settle down permanently- with a full-time job and a place of my own (maybe even  a boyfriend!) It just isn't my time yet..

Until then, I will have fond memories to look  back on and am forever  grateful for the experience. I just need to to where my primary focus should be- trusting God  to provide for the future like he always has. Maybe this time back home will rejuvenate my faith..

( This will be my last post from the apartment; all other posts will be from my parent's place! Internet will be disconnected sometime tomorrow.. Chuckle)

Abilities Expo Experience

Welcome Back Readers~

This weekend I had the pleasure of going to the 2016 Abilities Expo. For those of you that are unfamiliar with this event, it highlights different technologies and resources meant to enhance and/or increase independence in the lives of people with disabilities.For instance, have you ever wondered what it would feel like to "run"? I certainly have..  Well, with the help of Ainsley's Angels, I have the opportunity to take part in marathon in which I wouldn't otherwise be able to. You see, the organization has volunteers in  Virginia as well as other parts of the country who will act as the feet of  those are unable to walk; therefore giving them an experience they will always remember- the ability to run with the breeze in your hair and the vibration of the ground beneath your feet.

For more information on this organization, please go to:

http://www.ainsleysangels.org/

Looking forward to "running" sometime soon

Born This Way: Season 2 Official Teaser | Premieres Tuesday July 26 10/9...

Dear Readers,

It's hard to believe it's been four months since my last post.  During that time, I've had Botox for a second time, continued with therapy, and enjoyed the rest of my summer.The therapy went well; I succeeded in getting enough extension in my left arm to get  a Seabo  Stretch device.  This allows me to keep my arm stretched for extended periods of time without the assistance of someone. Right now, I am up to three hours a day in the splint.  The only downside being, I  am limited on how much I can do while I'm in the device. Ultimately, the goal is to start wearing the device at night.

Sadly, this treatment for CP (like many others) is only temporary.  It has to be repeated every three to six months in order to maintain elasticity and stretch of the muscles.. That leaves me with the age old question: What's Next? At this point, I really don't know. I just know I don't plan on making Botox a routine event on my schedule. I had hoped that this treatment would be maintainable over time but as my doctor puts it my flexibility is like that of a rubber band- the muscles can be stretched, but the reality is they will always return to its bent position (unless they are constantly stretched). Otherwise, surgery may be my only option.

Still, I am doing my best to live a life without limits. Just like the young adult cast of the series "Born This Way".  Season 2 of the series airs Wednesdays at 10 PM

Technology Review: Amazon Echo

Dear Readers,

I have decided to review Amazon Echo in the hopes of providing information to those wondering about its usability to those with speech as well is physical disabilities. For those unfamiliar with the technology, Echo (a.k.a. Alexa) is Amazon's own voice recognition service that allows people to listen to music, make lists and control their home simply by using their voice. I received Alexa as one of my Christmas gifts and after just two weeks using it- I LOVE IT!

Here are just some of my favorite functions:

1. Access to the radio- Since I am unable to use the radio in a traditional sense (through the tuning  of a dial, I love that the technology allows me to turn on the radio to  listen to my favorite stations by voice. I  simply say listen to 97.1  FM to hear that channel. This is especially convenient when I want to listen to the radio from from bed at night.
2. Sleep Timer-  This makes listening to the radio even more convenient because I can set a duration of time and it will automatically shut itself off
3. Access to Audible- Up until this point, I have been listening to my  audiobooks using Siri on my iPhone; that has worked, but Amazon Echo is better because of its speaker sound and volume.
4. Ability to change volume setting by voice- Alexa allows  users to adjust speaker volume settings simply by saying "increase" or "decrease". Additionally, you can change the volume setting by saying "volume" followed by a number ranging from 1-10. (1 being the lowest volume setting; 10 being the highest)
5. Connection to Pandora, IHeartRadio, Amazon Prime, podcast libraries, and Bluetooth
    a) Pandora- With a Pandora account, users can select certain music genre to play and use the "thumbs up" or "thumbs down" command to improve your personal station.
    b) IHeartRadio-similarly, this channel allows users to personalize music based on different genre, music artists etc.. The station also gives you access to live radio stations such as KLove, Wash 97.1 FM
   c) Amazon Prime-Echo obviously has access to Amazon Prime own music library; unfortunately, this means you have to have a membership.. I believe it's Amazon's way of competing with applications such as iTunes etc.. The membership is $99/year and provides access to videos, Kindle books and selected Amazon music. On the flipside, you can still get access to music you may have bought through Amazon, simply say "play music" or specify the specific album or song you wish to be played.
  d) Podcast libraries- Alexa also has access hundreds of podcast users can listen to, simply saying the podcast name you are looking for.
  e) Bluetooth access- Hooking  Amazon Echo via Bluetooth allows users to access music they have on their phone. The one negative is that you can't simply play music by specifying a title, it will automatically search for music on Amazon Prime. Users must select their music by clicking on their phone. However once this is done, they can change songs on the album or artist simply by saying "next" or "previous".

6. Quick Training- This feature allows users to train Alexa to respond quicker to their voice by going through more training of specific commands that Amazon Echo frequently hears. The more you train, the better it gets..
7. The Amazon Echo website and phone application- This website is especially helpful because it allows me to access and change settings and stations by voice through the computer if the technology is having a particularly hard time understanding me. The Apple application provides remote access when users are not close by to the device

Common Commands

Here is a list of commands I use:

1. "Alexa"- By default, this is command that wakes up the device; it lets Amazon Echo know you want it to do something..
2. "Listen to.." or "Play."- this command starts specified music or applications linked to the technology.
3. "Increase" or "Decrease"- As explained earlier in this post, this command adjusts the volume setting to a specified preference.
4. "Start", "Stop", "Resume"- These voice  functions play or stop stations or apps in use on the device.
5. "Sleep Timer"- this command sets a duration of time to stop the current application or music from playing.

As you see, there's a lot the technology can do, it is continually being updated to include more applications and commands

Encouragement: Girl's Best Friend

Welcome Back Readers~

Two nights ago I came across the inspirational story of Bella and George. 11-year-old Bella has Morquio syndrome, a rare genetic disease that attacks the bones.  Since birth, she has relied on crutches or a wheelchair to get around; but that all that changed when George entered her life.George is a Great Dane trained as a mobility service dog; his 131 pound body acts as a support as his master walks. Check out more on this story and its update below:




UPDATE:
https://www.facebook.com/JOURNALIST.TANYA.CARTER/?fref=nf