Wednesday, August 31, 2011

The Arc of SHR: The Arc of South Hampton Roads

The Arc of SHR: The Arc of South Hampton Roads

Sadie has a fever

Poor baby threw up on me last night and has had a 100' temperature too. :-(


6a00d834525fff69e20148c8773016970c-150wiLast year at The Arc of Virginia State Convention in Charlottesville, VA, Simon Sinek spoke about the "Power of Why."  This has been rolling around in my head for the past year. I follow him on Facebook, Twitter, and even read his blog.  While, I will admit, I have yet to read his book.

This morning I watched part of his presentation again and I think we are able to connect his message directly to the success of consumer directed services.  But more specifically, I think we can connect it directly to having successful, long lasting employees (Personal Aide Care Givers) for recipients of Consumer Directed Services.  If hiring an attendant to do a job for a consumer is all based on activities of daily living and NOT based on the employee understanding the "why," they may not have a successful experience.  Maybe people (service people, legislators, people without connections to people with disabilities, potential Personal Care Attendants) are missing the "Why"  when it comes to the needs of people with disabilities.  People who "get" the "why" are the people with disabilities and the people who have been given the chance to experience and value all people as equals.

Personally, over the past 3 years of having consumer directed services for my daughter, who has a rare chromosome disorder, I have struggled to have long lasting attendants for her.  As I watched Simon speak again about the "Why?" I wonder if I have been hiring Attendants based on the "What" NOT the "Why." 

Parents and consumers of services are directed to hire people based on the activities of daily living (ADLs) that the personal attendant is required to commit to doing for employment.  They are given the hourly rate, times of day that they are needed, and they are given the list of ADLs to complete.  Sometimes the person who is hired is in need of a job, they may or may not have experience with completing ADLs for a person with a disability.  Even if they have experience, does this mean the attendant actually knows "why" they are doing the ADLs.

I call this the "method to my madness" is my "why", but I'm not sure I really express this fully to attendants.  And so, I hire an attendant for my daughter, I explain what needs to be done with out explaining the "why" and so I continually find the attendant DOES NOT do what I ask.  They are unable to see the meaning in the direction.  But imagine simplest terms, I ask the attendant to change Sadie's diaper every hour.  The attendant forgets to do it and the consequence is that Sadie gets a rash on her bottom.  However, maybe if I had said to the attendant, she needs her diaper changed regularly because her bottom is sensitive and therefore, she will get a rash if you don't change her diaper regularly. 

Another example for my daughter is that she needs her nutrition monitored daily.  So, if I start off by telling the new attendant what I want my daughter to eat and what time based on a strict routine. I even post this routine in a clear place, but the attendant may think I'm controlling or picky, but in fact, my daughter has a sensitive stomach and her body does not show hunger.  Therefore, my daughter will not grow and thrive and be healthy.  She could become malnourished or dehydrated.  

The explanation of the "why" would give an emotional connection to the attendant to the consumer. I can not tell you how many times I have come home and found that the attendant has forgotten to give my daughter her high calorie milk supplement.  Not until I explain her need for it, did the attendant truly understand.  It would be like skipping a G-tube feed.

Is this possibly the missing element to the success of consumer directed services for those of us that are struggling?  If we are "starting with the why" when we interview and screen during the hiring process, then we can hire people who "believe what we believe"...that people with disabilities have value, contribute, and are entitled to a life just like anyone and everyone.  In Simon's words, "the goal is to do business with people who believe what you believe."  

If consumers and Parents who are the Employer of Record for the recipients of Disability Services know "Why" they need an attendant and recruit attendants based on the "Why" not the "What," maybe there would be more success serving people in their home.  For example, when the person with a disability is screened for a waiver service, the nurse and social worker go down a list of the "whats"...can the person dress, feed, bowel, personal care, etc.  But I think the crucial element missing here is fundamentally the "Why."  People with disabilities are found eligible for services for the "What," but truly to them it is really for the "Why."  

Recently, I heard Dr. Al Condeluci speak about this and remind the audience of the "why."  All people want a healthy happy life, they want a home, they want friends, income, they want to be a part of life and all the wonderful things that go along with being happy.  

Some where along the way people in service system, people who work "in the system" are more concerned with the "what of the services" rather than the "why."  People who live and breath advocacy and disability are engrossed in the "why."  

So all these thoughts lead me to think about how to get people who needs a job and people who need an attendant to be on the same page about their "why."  Possibly better training to parents and consumers for the hiring process, perhaps courses for new employees on self determination and person centered planning, or training for employers of record and the consumer to explain their "why."  

On a legislative advocacy level, we can invite policy makers to our homes to see that the policies they create affect people with disabilities.  We can seek out our local chapter of The Arc, or Center for Independent Living.  I also know that some providers in our area have courses and training for their employees, maybe consumer directed services can tap into resources that are already established too.

Overall, as Simon Sinek says, "the goal is to do business with people who believe what you believe."  Over the years, I learned that, but not sure I implemented it with consumer directed services and attendant care for my daughter in my home. It's time to "start with the why."

Tuesday, August 30, 2011

Escaping Irene

On Friday we jumped in the car with the family to Escape the effects and dangers of Hurricane Irene.  Considering we were hearing possible Cat 4, I think we made a good choice, especially living so close to the water.  Storm Surge was a big concern in our area. 
And so we were lucky enough to have family who rented a house in the mountains. I had a lot of concerns about being in a new house.  After all, it is hard to sit still even at our "Sadie Proof" house.  As I expected, Sadie was into everything in the kitchen...she just loves being in there.  She is innately attracted to the ice maker on the outside of the fridge, the sink, the knife drawer, and of course the ever changing and interesting trash can. She was her normal self...she never stopped walking around, she was up and down the stairs, in and around exploring the WHOLE time. I don't think I ever sat down for more than a minute, and that's when I decided to barricade myself in our room with Sadie.  So that she could feel more free and I could relax. At one point the 3 piece sectional sofa was split up in an attempt to block her way into the kitchen and to the stairs.  Chairs were even put in front of the door to the stairs that went down to the 3rd bottom floor.  The kitchen trash can was moved to the bathroom and grocery bags were hung up high for the trash in the kitchen.

A few things I didn't expect, she was able to go up and down the stairs mostly unassisted between the 2nd and 3rd floors.  She actually sat on her bottom at the top of the stairs and scooted down on her butt.  When someone was with her on the stairs she would hold their hand and walk down.  She was mostly safe being left alone for a small amounts of time.  However, a side note is she was "safe," I didn't say she didn't get into anything.  The toilet paper had to be put up and any thing else like shampoo or soap would get dumped out on the floor.  She emptied all our bags in our room on the floor and anything that would hurt her was already up in the top shelf of the closet.  I was pretty worried about the open outlets and her pulling a dresser or tv over.  
I think our trip gave me the courage to try another trip, with a little more prep, like taking a paid attendant so that I could sit a little more and enjoy the break.

Other things that I expected...Sadie was her usual HAPPY self, sweet, loving, snuggle self.  She slept well once she went to sleep and she slept through the night both nights. 

Overall, while it was stressful for me at the beginning of the trip, it did get better and I have the confidence that maybe we can try another family trip.

On a side note, Sadie and I met up with a friend and her family for lunch at Applebee's on Saturday. There aren't enough words to express how glad I was to spend an hour with them.  Their daughters are amazing.  Their oldest was so sweet to Sadie, even though Sadie kept blowing Frito mouth raspberries at her =) And their youngest shared a granola bar with Sadie.(their youngest has Down Syndrome, which I have to mention because being around a family similar to us makes me feel so normal AND I'm so grateful to have such a good friend that I feel "safe" around).

Below is a photo of the very very quick stop we made on Afton Mountain to view the Shenandoah Mountains.  

Below is a photo of our neighborhood hangout, which is on the inlet.  Our house is around the corner, but higher above sea level, so we actually didn't have flooding like this.
We came home on Sunday afternoon to electricity, minimal leaves, and small branches in our yard.  Over all, I think we were very lucky and my heart goes out to those who had more damage and lost their lives to Hurricane Irene August 26-27, 2011.

Monday, August 22, 2011

doctor appointment

Took Shelbi (and Sadie) for her post-op appointment at the Children's Hospital alone without help today (took a lot of courage). I complimented Shelbi on all her help with Sadie and she said, "Weeelllll Mom...I didn't want you to freak out." I about fell out of my seat as I was pinning Sadie between my knees and holding her arms, while the Doc was trying to examine Shelbi. HAHA We made it home without too much stress...More allergy medication and nasal spray for Shelbi due to fluid in her ears.

Sunday, August 21, 2011

Surfing for the first time...

Surfers Healing Camp was in our area yesterday.  (click here for the History of Surfers Healing)

Our plans for the day included watching a friend's daughter surf in the morning and going to a Virginia Zoo event in the evening.  A full day ahead, I had no idea our day would be so rewarding and exciting.
Eager to get there on time to see our 7 year old friend surf, we started our 10 min walk to the beach. We hustled to the beach and walked to the Team Hoyt Tent , telling the volunteers we were there to watch, but weren't participating in Surfers Healing.

Immediately, I saw a friend who said the surfers will take some of the extra kids out to surf if there's time. I thought, that's pretty cool, but really didn't expect for Sadie to go out.

With in minutes, Sadie's dad walked over to the line and asked if they had room for Sadie.  With in seconds, they were putting a life jacket on her and walking her to the surfer and board on the beach.
It all happened SO minute we were getting settled on the beach to watch and hang out, and the next I'm scrambling to get my camera out to take photos.

The view of your child sitting on the end of a surf board, as a professional surfer (volunteer) is paddling her out to the surreal and so emotional.  It was one of the most amazing events to witness. Watching them sit in the calm water rolling with the ocean.

It was a moment in time where I had no fear, only joy that she was able to sit out there and feel the breeze, feel the water, and experience something new and exciting.

We stood at the waters edge with the volunteers lining the coast to help, watching as the surfers in orange rash guards paddled out to the break and sat calmly on their boards, while children with disabilities lay happily on their stomachs protected by a team of passionate surfers.  Each hoping to give a child with a disability an experience they would always remember.

Watching from the water's edge, it looked calm and peaceful.  Living so close to the beach all my life, I have never surfed, but I felt absorbed by the moment and emotional.  I felt secure too, as if I was letting go a little bit, that someone else was able to keep her safe.

Sadie's surfer (I wish I knew his name) took her out 3 times, and only wiped out once.  He had amazing strength, as he pulled Sadie up with one hand as they were riding the wave.  When he lifted her up, she tucked her feet under her and didn't put her feet on the board.  He was able to hold her in the air.

In the end, she was given a medal, and her family a moment to feel grateful and joy for the memories that this day brought to us.

It really was one of those times in your life where you know you will remember every moment and cherish the volunteers, surfers, and organizations that care so much and offer so much to people with disabilities. Thank you Surfers Healing!