Sunday, March 10, 2013

Speedy Shines: A Turtle (and author) With a Big Heart

Robert with Speedy Shines
I first met Gina Restivo during the Robert’s Sister Epilepsy Interview series in November. Gina is a children’s book author, terrific mom and fellow avid coffee drinker who continues to amaze me. She first wrote the children’s book, Fly Danny, Fly and included a dedication page in that book to the Danny Did Foundation which was created after 4-year-old Danny died of SUDEP.  (If you’re a regular reader of this space you know 50,000 people a year die as a result of epilepsy related causes).

I was excited to learn Gina had a new book, Speedy Shines, coming out and anxiously awaited the opportunity to purchase it. Sure, it’s a children’s book but it was about a turtle!  (We have a turtle so I’m partial to turtles). 

Once our copy arrived, I showed it to Robert and told him people who buy the book help two groups who help people with epilepsy. Robert liked that. (The Chelsea Hutchison Foundation and the Danny Did Foundation are two foundations who were created after the founders’ families both lost a child to epilepsy).  

Robert wanted to read the book.  Robert is able to read but it is slooow going.  Reading about a turtle seemed appropriate.
Don't interrupt me - I'm reading

Throughout the afternoon I checked on his progress and noticed he read each and every page thoroughly. Part way through, I asked him how he liked the book so far and he said, “It’s a nice book.”  (Robert is a man of few words.)

I let him get back to reading.

Once he was finished, Robert declared, “I had a fun time reading it.”

It was my turn to read it.  The illustrations by Martin Heraty were colorful and whimsical with delightful details (on one page, Speedy is reading a stack of books, one of which is named “Finding Your Inner Shell”).  Cute!

The story was sweet and heartwarming.  Even though he was surrounded by friends and was making the most of his original home, Speedy felt a tug at his heart and realized he had to muster the courage to find what he was missing. Speedy was searching for where he truly belonged and had to decide if he should follow his heart to find it.

Courageous indeed!

I’m not a professional reviewer but I know enough not to give away the ending so you’ll have to read for yourself whether or not Speedy finds what he was looking for!

Gina Restivo says, “I think that Speedy Shines is a wonderful way to bring epilepsy to the general public with the dedication page to The Danny Did Foundation and The Chelsea Hutchison Foundation at the end of the book. There are a few statistics on that page that will hopefully shine a light on epilepsy while bringing kids a cute story about a turtle who found his shine once he found the right light for him. This book is a way to involve more than the epilepsy community in the fight for a cure. Speedy Shines and is so inspired by those struggling with epilepsy and I feel certain that if the general public is given a window to see what I do, they will be inspired too!”

Gina shines in her work to bring about broader awareness of epilepsy and is due many thanks for her work!  

Once you read the book, let me know in the comment section how much you enjoyed it. 

Shine on, Speedy!




Wednesday, March 6, 2013

You Know It's a Bad Day When . . .

. . . your Girl Scout cookies are conspiring against you.

(I am not making this up.)

My day was in a slump anyway due to a bad morning at work.  We all have them and it seems as if things pile on from there.  It actually started before I even got to work this morning.

The puppy decided he had to go to the bathroom at 1:30 in the morning.  Then saw it was raining and said, "oops, nevermind. Let's go back in."

Oh no you don't, little one.

Walking outside barefoot (I couldn't find my slippers, socks or shoes - hey, it's the middle of the night), I picked him up and set him on the grass.  He finally realized I wasn't going to let him in the house until he did his business so he did and we went inside and dried us both off (I forgot to grab my coat on the way out, too).

Snuggled back in bed (me, the puppy, Hubby and our adult Lab - we need a bigger bed!), I awoke at 4:00 a.m. to Hubby getting up to stretch his back.  Puppy jumped up to see what exciting thing Hubby was doing and scrambled off the bed, using my face as leverage to push off.  Adult lab decided he could stretch out in the now open space, disregarding my need for any leg room.  Finally, I just got out of bed at 5:30.

It's early but I saw it as an opportunity to get a jump start on the day.  Hubby made me a mocha which took the sting out of the lack of sleep (now if I could only find concealer that worked well enough to hide my dark circles!)

I got to work early and caught up on a few projects but had some issues with one ongoing, increasingly frustrating project which I couldn't shake the rest of the day.  Ugh! I tried to tell myself it was a bad morning, not a bad day.  Maybe it was a bad moment, even!  I compromised on many bad moments in the morning.  Which, of course, I had to relive all day. (Bad plan, in case you're wondering).

Thank You Cookies for the floor
I decided to hit up my stash of Girl Scout cookies for a boost.  I have a box of Samoas (or whatever they're called now) and a box of "Thank You" cookies - shortbread with chocolate on one side and a big "Thank You" inscribed on the other.  Yes, that's what I need!  A Thank You cookie!  Thank You to me!

Somehow I must have let that bad energy from my bad moments creep back in and the next thing I know, the Thank You cookies are sprawled out on the floor -- on the nasty, walked on, probably never wiped down, carpet protector floor mat under my desk chair.  Even I wouldn't apply the 10 second rule in this case. 

My Thank You cookies were toast. 

Should I take this as a sign to save myself the calories? 

Heck no!

I opened up the brand new box of Samoas/whatever-they're-now-called cookies. 

Where's my missing cookie?
It's bad enough they changed the name of my favorite cookie (okay, it's a close tie with the Thin Mints) but the boxes seem to get smaller every year and the prices seem to go up too.  My negativity today knows no bounds.

This time, I opened the new box to discover one cookie missing!  What?  I didn't believe this was even possible and started to imagine a scenario of some poor Girl Scout Cookie Factory worker who missed her break and was hungry and had to eat something before she fainted.  (Where is the Giant Girl Scout Cookie Factory anyway?)  I double checked the box to see if this missing cookie had just fallen out of its slot but it was truly missing.  Someone at the factory ate my cookie because she was going to faint. Or because they are so delicious - it has to be one of the two!

This sure seems to be a sign that I need to save myself the calories and maybe even call it a day.

Nope.

I decided I needed to eat a few of the Samoas/Whatever-they're-called before they end up on the floor.  

Hmm, they are as delicious as I remember when they were just Samoas!

Now I can see a little clearer and think of the positives of the day instead of focusing on a few bad moments.  I may not have gotten enough sleep or had the best day at work or even had the best luck with my Girl Scout cookies but I did have puppy time, a sweet gesture from my Hubby, a delightful lunch with my daughter and can look forward to more time at home with the animals (and Hubby).

It's really just all about the moments.

But the cookies don't hurt, either.

Sunday, February 17, 2013

Happy Anniversary, FMLA!

On February 5, 1993, President Bill Clinton signed into law the Family and Medical Leave Act (FMLA). (Yeah, I’m a few days late with the anniversary wishes – I blame the puppy). J

FMLA provides unpaid protected leave to eligible employees employed by a business with 50 or more employees.  Specifically, the Department of Labor defines the FMLA as follows:

The FMLA entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave. Eligible employees are entitled to:

·         Twelve work weeks of leave in a 12-month period for:

o   the birth of a child and to care for the newborn child within one year of birth;

o   the placement with the employee of a child for adoption or foster care and to care for the newly placed child within one year of placement;

o   to care for the employee’s spouse, child, or parent who has a serious health condition;

o   a serious health condition that makes the employee unable to perform the essential functions of his or her job;

o   any qualifying exigency arising out of the fact that the employee’s spouse, son, daughter, or parent is a covered military member on “covered active duty;” or

o   Twenty-six workweeks of leave during a single 12-month period to care for a covered service member with a serious injury or illness if the eligible employee is the service member’s spouse, son, daughter, parent, or next of kin (military caregiver leave).

 
According to the Department of Labor, the “findings and purpose” of this revolutionary leave act was to “balance the demands of the workplace with the needs of families.”  

Twenty years ago, the President and Congress recognized that the majority of caregiving roles fell to women and these caregiving responsibilities affected women in the workplace more than they did men, therefore one purpose of the FMLA was to “promote the goal of equal employment opportunity for women and men.”

While the majority of caregiving responsibilities do fall to women, that has even changed over the years as more men become primary caregivers.

In a 1997 study, the National Alliance for Caregiving and AARP showed the face of caregiving looking like this:

o   There were more than 22 million caregiving households;

o   73% of caregivers were women;

o   23% care for more than one person;

o   85% of caregivers care for a relative; (Robert’s Sister note: the specific relatives were not broken down in this study);

o   64% of caregivers were employed;

By 2009, a study by the National Alliance for Caregiving and AARP shows the changing world of caregiving:

o   65 million caregivers provide care to someone who is ill, disabled or aged;

o   66% of caregivers are women;

o   33% of caregivers take care of more than one person;

o   86% of caregivers care for a relative; 33% of caregivers care for a parent. The rest care for a child, in-law, sibling, grandparent, grandchild, spouse or other relative or friend;

o   73% of caregivers were employed at some time when they were caregiving;

o   Among the working caregivers, two-thirds have needed to revise their work schedule in order to take care of caregiving responsibilities;

The number of caregivers exploded over those years, with an increase in the number of working caregivers and those caregivers caring for more than one person.
 
It is obvious many of those being cared for do not meet the definition of family under FMLA: there are caregivers providing care to grandchildren, grandparents, aunts, uncles, siblings and adult children (who are not dependents) in addition to those who care for a spouse, parent or dependent child.
 
In order to keep up with the growing caregiving population – and keep those growing numbers of caregivers in the workforce – FMLA needs to change.
 
Keep in mind, FMLA is an UNPAID protected leave. 
 
Would a paid leave help family caregivers stay in the workforce longer?  Of course.  However, as an employer, I understand this could be a strain on employers so I am not asking for that (okay, not yet). 
 
What I’d like to see changed in the near future is an expanded definition of family.  Why not include siblings, in-laws, grandparents, domestic partners, adult children (non-dependents) and grandchildren? 
 
What I would like to see changed is a lower employer threshold.  Why not allow eligibility to those employed by businesses that have fewer than 50 employees?
 
FMLA needs to expand the definition of family and FMLA needs to lower the threshold of the minimum number of employees in a business to qualify for coverage. Many states have taken steps on their own to address these limitations within FMLA. 
 
California is one state which has made strides in changing the definition of family under the California Family Rights Act (CFRA) by including domestic partners but has stopped short of including any other type of family care.  Legislation has been introduced the last few years to expand the definition of family under CFRA but, unfortunately, has not yet succeeded.
 
I would like to see change in the definition of family on both the national and state level of these family leave acts.
 
I am grateful for what President Clinton did twenty years ago for the working family caregiver but it is time to recognize caregiving responsibilities have changed and include more than what was envisioned in 1993. 
 
I hope you had a nice anniversary, FMLA.
 
Now let’s make some changes.

Thursday, February 7, 2013

Puppies, Turkey Sandwiches and Adjustment

I’ve been MIA.

Thankfully, it isn’t because Robert is in the hospital or because caregiving duties have become overwhelming.  (Unfortunately, my mother-in-law is in the hospital but that has been a recent development).

The reason for my absence? 

This little guy:


Meet Taz - not usually this still!
We had no intention of adopting a puppy. 

In fact, we had recently claimed a cat that was living on our porch which was enough for me.  We fed him, named him Rambo, got him his shots, neutered him and brought him in to a warm house with other cats.
 
He hates it. 
 
Rambo lived on the streets for 18 months and now he’s trapped in a house.  I recently walked in on him trying to climb out a second story window – he was between the glass and the screen and two steps away from flying out the window.  I rescued him but realize how unhappy he is now.

 Rambo isn’t the reason I’ve been MIA, though.  Heck, cats are usually super easy.

Meet Rambo - Not loving the indoors
It’s the puppy.  Taz came to us by way of my daughter.  She works for RedRover which is an animal rescue organization that helps out animals that are displaced during a natural disaster and provides financial assistance for those who need help with urgent veterinary care.  It’s a wonderful organization but it is not a shelter.  Just over a week ago a man came to their office with a puppy he had found roaming a WalMart parking lot.  He couldn’t keep him, the shelters were closed that day and the good-hearted people of RedRover couldn’t turn the animal away. 
 
I mean, who could resist this face?

Taz came to live with us and it has been quite the adjustment.  He is a bundle of energy and has lived up to his name.  Our middle-aged lab, Oz, wasn’t quite sure what to make of him; after all, he was used to smaller dogs but they were all old and not nearly as energetic as this little guy.
 
It’s taken a week of adjustments (and realization the little guy wasn’t going anywhere) but Oz is starting to come around (for the most part).  It’s not perfect (yet) but I’m not such a nervous wreck when they’re together (well, maybe just a little bit).
 

I’m adjusting but it is taking time.  The whole family schedule is completely thrown off and I don’t have near enough computer or relaxation time.  I’ve been so used to old dogs and cats just lazing around while I write or watch television. 
 
It’s only been a week so there are more adjustments to be made.  I’m hoping to be able to write another blog post in six months or so. J
 
Robert has only had one day with Taz and it mostly involved Taz trying to steal Robert’s turkey sandwich. 
 
Robert was not a fan.   
 
Again, more adjustments are needed. Along with time.
 
My problem is I am impatient with adjustments but I know they do happen and things work out – in time.  Fitting in taking care of Robert took some adjustment but now we have it down to a routine which only gets thrown off by hospitalizations (we’ve even adjusted pretty well to how seizures throw off the schedule).
 
A friend of mine wrote a blog post on Caregiving.com and shared information about adjustments  written by Lara M. Stepleman, Ph.D., a licensed psychologist and Professor of Psychiatry and Health Behavior at Georgia Health Sciences University.  Dr. Stepleman was writing about adjusting to a chronic illness but her wisdom applies to any adjustment.  One observation by Dr. Stepleman really hit home with me, “Adjustment doesn’t just happen once, it happens over and over. Few, if any of us, are ever finished adjusting.”
 
Oz isn’t the only one who needs to adjust to the puppy and his boundless energy.  Robert needs to adjust, I need to adjust, my husband and daughter all need to adjust. 
 
Not to mention our cats and poor Rambo!
 
I have faith we’ll adjust and end up with another very happy member of the family (who, hopefully, will eventually realize how wonderful it is to curl up on a blanket and relax).  I have faith Robert will come to love Taz and look forward to having another animal to pet when he visits. 
 
I’m not quite convinced Rambo will adjust to the benefits of being an indoor cat but we’ll give that some time too or we will find another way to keep him happy. 
 
In the meantime, I’ll make sure the windows stay closed.