Who Am I?

getting ready for my dance recital, 6 months before my first seizure

goofing with my brother, one month before my first seizure

4 hours after my first seizure

two months after my first seizure

starting Kaitlin's Cauze, 4 months after my diagnosis of epilepsy

pitching in softball 6 months after my diagnosis of epilepsy

riding roller coasters 2 years after my diagnosis of epilepsy









and finally...

me today
graduating intermediate training class with my service dog in training

Take a good, long look at all of these pictures.  Do you see anything different from picture to picture?  Can you tell the difference between the "before" epilepsy and the "after" epilepsy pictures?  No?  That's because I'm still the same person I was BEFORE I was diagnosed.  Nothing has changed about me, except I now have epilepsy.  I don't look different nor do I act different (unless I'm actually having a seizure:).  I am still ME. 

I am still a daughter, a sister, a grand daughter, a niece, a cousin, and a friend.  I still like chicken nuggets, hotdogs, pizza, tacos, and ice-cream.  (I'm still a picky eater too:)  I can still play sports, swim, play in the snow, ride horses, and ride roller coasters.

I still get good grades, but I do work harder to get them.  I can still play drums and keyboard.  And I can still sculpt in my weekly art class.

There is no need to feel sorry for me or treat me any differently.  What I have is not contagioius.

People with epilepsy are no different than people without epilepsy.  People with epilepsy are no different than people with other disorders or illnesses.  In fact, people with epilepsy are doing amazing things every single day.

Epilepsy is one of those prevalant disorders; chances are at some point in your life, you will know someone who has seizures.  1 in 10 people will have at least one seizure in their life and another staggering 1 in 26 people will go on to have epilepsy.  That one person could be you, your best friend, your family member, your co-worker...

Learn the facts about epilepsy because you NEVER know when you may be called upon to help someone who is having a seizure.

Texting All Teens!!!!

Are you tired of your parents nagging you about taking your medicine?  Are you wanting to take more control of YOUR epilepsy?  Do you like texting?

If you answered yes to any of the above questions, READ ON...

The Epilepsy Foundation has made it possible, through funding from the Centers for Disease Control,  for a texting service to be implemented for teenagers with epilepsy.  The program, called Care Epilepsy, is a text messaging support that is availabe to teenagers with epilepsy.  It is designed to remind you to take your seizure medication and will also send motivational messages via texts, to help you stay positive and help empower you to take control of your epilepsy.

If you would like more information please contact:

Temi Aregbesola at taregbesola@efa.org or Jody Kakacek at jkakacek@efa.org

You can also call: 301-918-3478 or 301-918-3722



Jack of all Trades

I haven't updated on Jack lately, mainly because I've been busy training.  He is now one year old.  This last year has been filled with lots of ups and downs for us, mostly ups.

I can't imagine not having Jack in my life.  He is my constant shadow, my four legged protector, my extra set of eyes, and my friend.  He started alerting to my seizures in September of 2011.

His first alert was 8 hours prior to the actual seizure.  Fortunately he has fine tuned his alerting skill; with my last seizure he alerted 30 minutes prior.  He becomes extra "clingy" and whines and licks me as an alert. 

His training is going well.  In addition to the "basics" he also has advanced obedience training.  He will go "down" with me giving a hand signal from 30 feet away.  He also does a pretty fierce "down" on "recall", meaning as I call him to me I tell him to go "down" and he immediately drops down into position.

I can put him in a "wait" as I unload the car and walk 30 feet away, and he maintains the position until I call him to me.

We've been working him hard and increasing our expectations of him.  Even when we are out doing public access training, we add constant distractions to make sure he is on top of his game.  These distractions can be anything from a ball bouncing directly in front of him to a plate of food set down beside him. 

He's already trained to retrieve my emergency medicine, water, and a phone.  In addition to those tasks he is getting pretty good at recognizing my complex partial seizures and responding without any verbal commands.  He is proficient in recognizing a tonic clonic and responding on his own, without any commands given.

Jack will continue to be in training for at least another 3 months, maybe more.  We want to make sure he is proficient 100% of the time, in all situations, before we test him out and graduate him.

It's been a lot of work training him, but it's been worth every second of it.

Kaitlin

Access Denied...

We've been taking Jack to Hershey Park all summer long and have never had any problems until the other evening.  Security have never questioned our entrance into the park and the employees inside the park have always been respectful of my service dog.

We've even taken Jack to Hershey Chocolate World, which is on the same property as Hershey Park.  We've never had any problems with any of the employees while at Chocolate World either.  They've never questioned me or the presence of Jack.

This past Friday we were on our way into the park when a security guard asked to see Jack's papers.  My mom nicely informed him that he was violating ADA by making such a request.  The security guy wasn't as nice in his response and stated that he had the right to ask for Jack's papers because we were on "private property".  My mom calmly told him that under the American Disability Act, Hershey Park was considered a public accessible area for us.  The guy continued to argue with my mom which started to embarrass me slightly.  I felt like I was on display for everyone around us to listen and watch.  My dad decided to end the scene by showing the security guy Jack's papers  so we could get in.

After seeing the paperwork, we were allowed to enter the park and start our evening of fun.  Kind of...  because my mom could not seem to drop the subject and kept bringing it up. Over and over again.

My mom explained to me that under the ADA, a place of business may NOT request to see documentation as proof that an animal is a service animal.  The ONLY questions that may be asked are: 1) is the animal required because of a disability and 2) is the animal trained to perform tasks to help the person with the disability. She also explained that his questioning of Jack was in violation of my rights according to the ADA and according to our state law.

My mom has sent a formal complaint to the corporate office of Hershey Park outlining the violations of my rights as well as the state and federal law which protects my rights.  My mom is optimistic that this will be resolved in a friendly manner and that we will not have to endure such treatment in the future.

Stay tuned.  I'm sure I'll be posting a follow up...

Onward and Upward...

In spite of outside attempts at interference into Kaitlin's Cauze, we just wanted to let our viewers know we are still going strong and we are NOT going anywhere.  In fact, you can check out our new logo to the right of this post:)

Some important dates are coming up this week and we want to make sure you are aware...

Tuesday, September 20th from 4:00 to 9:00, Kaitlin's Cauze will be hosting "Kaitlin's Family Fun Night" at Friendlys on High Pointe Blvd.  Proceeds raised will benefit a local woman who is raising money for her own seizure response dog through Susquehanna Service Dogs. Stop by for dinner or just for ice-cream; make sure you stop by and say hello to Captain "Jack" Sparrow, Kaitlin's service dog in training, from Noelle's Dogs Four Hope.  We will have some pretty cool items in our drawings, so make sure you check out our table that will be located at the entrance.

Sunday, September 25th from 10:00 to 1:00, Kaitlin's Cauze will be holding Pennsylvania's First Annual Chelsea's SUDEP Awareness Walk, at Shank Park in Hummelstown.  Kaitlin has coordinated this walk to take place at the exact same time the Colorado walk will be taking place.  Again, lots of pretty amazing items will be in our drawings and you won't want to miss the opportunity to win a Caribbean vacation! Money raised from this event will go directly to the Chelsea Hutchison Foundation. 

If you would like more information regarding the walk, please email Kaitlin at: kaitlinscauze@comcast.net

We hope to see you at one or both of these events!!!!

Chelsea's Walk

Kaitlin's Cauze is organizing the very first Chelsea's Walk for SUDEP Awareness in PENNSYLVANIA on September 25th.  We decided to have our walk at the exact time Colorado will be doing their walk.  Chelsea will be leaving a lot of footprints that day.

Kaitlin's Cauze is a proud supporter (and big fan) of the Chelsea Hutchison Foundation.  They are helping people gain independence by offering financial assistance to individuals who wish to get a seizure response dog.  They are also providing parents with peace of mind by helping to provide funds for EMFIT monitors.  And they are speaking out and raising awareness about SUDEP.

Please consider hosting your own walk for Chelsea in 2012.  Contact ChelseasLegacy@aol.com for details.

Captain Jack Sparrow

12 week old Golden Retriever

Meet Captain Jack Sparrow, named after my favorite actor's character:)  Jack came to me from Noelle's Dogs Four Hope in Colorado Springs, Colorado.

After much research into different service dog organizations we decided to use Noelle's Dogs Four Hope.  There are many awesome service dog providers out there and I recommend that you do your research before making any decisions.  I also recommend that you are compatible with your trainer.

Noelle's Dogs Four Hope allow their clients the opportunity to puppy raise their service animal in training.  Because of this opporunity to puppy raise, using Noelle's Dogs Four Hope as my service dog provider was the best choice for ME.

WHAT JACK IS:

Jack is a service puppy in training.

Jack is a working dog.

WHAT JACK IS NOT:

Jack is NOT a service dog.

Jack is NOT a family pet.

Jack is NOT a cat:)

Jack is NOT a dog to be dressed in clothes.

Raising a puppy is life changing.  I have to be willing to change my schedule and activities to include Jack.  If I cannot take Jack with me, then I stay home. Raising a puppy is hard work and requires my attention at all times. I am responsible for all of Jack's care. I feed him, clean up after him, provide training and exercise, and make sure he is ready for all of his vet appointments. Puppy raising is not for everyone.  Please do not make this decision if you are not willing to put the time and effort into it.

I have had  Jack for 4 weeks.  I have trained him to: come to me when I call him, sit, lay down, do automatic sits, puppy push ups, greet people nicely, lay under the table during meals, potty on command, and short sit/stays and down/stays.  He also knows how to watch me, leave it, target, get it, and bring it. These are just some of the basic commands needed for Jack for the future.

I am excited to have this opportunity to train my own dog in basic obedience and public access.  When Jack is a year old he will return to Colorado for further seizure response and water rescue training.

Thank you to everyone who has offered me and Jack encouragement.  I will try to keep everyone updated on his progress through the upcoming year.

Love,

Kaitlin and Jack <3

Chelsea's Legacy

This week I was privileged to attend the annual Chelsea Hutchison Foundation dinner and silent auction.  Chelsea passed away unexpectedly from SUDEP two years ago.  She was only 16 years old.  Since then her parents have started the Chelsea Hutchison Foundation in memory of Chelsea.  They raise awareness about SUDEP, give grants to people who are getting a seizure alert/response dog, and pay for EMFIT movement monitors for those in need of one.  The benefit this week, from what I hear, reached it's goal of raising 50K.

I was invited to attend this event and tell my story.  I am honored to be part of such a great foundation and I am leaving Colorado today with a promise to myself to work harder at raising epilepsy awareness and money for this foundation.

I have met so many awesome people this week, most of which I know from facebook.  This week has been nothing short of amazing. 

Alice, a seizure alert/response dog who alerted to my seizure at the event.

Me and Julie, Chelsea's mom.

Me with Robert and his seizure alert/response dog, Patches.

I also got to meet my new puppy that will be trained as my seizure response dog.

I am sad that we are leaving Colorado today but I am looking forward to seeing all of these wonderful people in less than 2 months.

Chelsea must be smiling down from her heavenly view, happy at the people she is bringing together...