Monday, June 27, 2011

Prayers for the Book

It's been a very busy week.  I am finishing my work with Epilepsy Foundation Middle and West Tennessee, picking up steam in bringing the satellite office of the Epilepsy Foundation of Kentuckiana to Western Kentucky, and also working on the Walk Around Kentucky for Epilepsy that will benefit the EF of Kentuckiana: which will be held in Murray KY on Saturday July 9th!! It is a busy time. 

Also, at the heart of my work, is Caleb's Story, and some exciting things have happened this week in regards to my book.  I have had an Acquisitions Director for a publishing company to begin doing a "quick overview" of my book and emailed me to say she had been "sucked right into the story".  She has no ties to epilepsy or autism or children with chronic illness, and she thought the story was touching and profound.  It just absolutely made my day!! I am praying that the editors that read my work are moved by Caleb's story and feel that it should be published, and I am asking for you all to pray for that as well!! Also, today, at a meeting about a potential grant for our endeavor in West Ky, a sweet lady who was there who heard me speaking about my book with my colleagues, and was so moved by what we were discussing, that she asked to read my book as soon as it came out! That just touched my heart and made me feel so thankful that just hearing a glimpse about Caleb makes people want to read and hear our journey! 

I miss my sweet boy every day.  But knowing that his journey, his story, our lives with him, resonates to people from every walk of life, it just makes me more driven to see that his story is published to reach everyone, because I think everyone could learn something from his life. 

I am meeting some wonderful people along this journey, and I am so grateful to those voices of support and love and encouragement.

If you are dealing with Epilepsy or Autism or other comorbidities, find hope, make a team, reach out.  Contact me here, or at, I will do all I can to help you.


Beth Baker

Thursday, June 16, 2011

First ASD and Epilepsy Seminar

The first (to my knowledge) Seminar specifically for families with children dealing with Autism Spectrum Disorders and Epilepsy will be held next Thursday, June 23rd at the Vanderbilt Kennedy Center Rm. 241.
Dr. Gregory Barnes will be presenting.  He is the Director of the Pediatric Epilepsy Monitoring Unit and Assistant Professor of Neurology and Pediatrics at Monroe Carell Jr. Children's Hospital at Vanderbilt.  Dr. Barnes was our Caleb's Neurologist, and helped us in providing the best possible care for him.  He is continually looking for ways to help these children in his research and in his clinic. 

Dr. Barnes is graciously giving me time to present about Resources that could be helpful to this special population of children and their families.  In gathering the information, I discovered two things.  One: There are very few resources out there that encompass both ASD and Epilepsy.  Two: It is important for me to share my experiences with other families, and if I can empower parents to feel more able to care for their children - then, it's a win/win. 

If you know someone who has a child with ASD who has Epilepsy, or suspected seizures, please share with them this information. You can register to attend by calling ASMT at 615-385-2077, or registering online at their website:  I am hopeful that many will be able to step away for a moment from the overwhelming day that I'm sure they've had, and learn more about how to help their children and find people that will help them.  It's all about building a team, and I am so glad to be able to share what I learned from our precious Caleb....Team Caleb is still strong!



Friday, June 3, 2011

Meeting Beautiful Faces

Yesterday and today, I had the priviledge of meeting some wonderful people at the Tennessee Disability MegaConference.  It was a rewarding experience.  I represented the Epilepsy Foundation Middle and West Tennessee to sign up individuals to recieve support group and educational information, educated them about laws that protect their rights as patients, and shared first aid information.  The most rewarding part of the conference was seeing children and adults with disabilities treated as individuals and without judgement and with respect and LOVE. 

It is amazing how a child with special needs brings an amazing awareness to those around them about how important and how unselfish LOVE is.  This special population of people among us teach us more than we could ever learn about living.  They live with hope in the face of adversity.  They smile instead of crying.  They hug you even when you are a stranger, and just fill your heart with warmth.  They accept others.  They LOVE. 

I was reminded today how much I wished for Caleb to be able to grow up into a young man.  But throughout the short time he was here with us, he LOVED.  He didn't have to tell me, it was the way he would reach to hold my hand.  That is something that I miss the most.  He loved everyone around him.  He was strong and accepting and gentle and kind and he LOVED everyone. 

Despite your personal situation, you were likely brought to this site to learn more about Epilepsy.  My experience with Caleb and his fight with Epilepsy was a daily battle.  He fought, we fought with him.  But along the way, regardless of how difficult it might have been, we looked for the smallest way that he would reach out and show LOVE to us, a brief grin, holding our hand, a gentle hug, or just him looking at us with his beautiful eyes. 

Children and adults with Epilepsy deserve your LOVE and support and acceptance and kindness.  Did you know :
  • 300,000 people have a first convulsion each year.
  • 200,000 new cases of epilepsy are diagnosed each year.
  • Incidence is highest under the age of 2 and over 65.
  • 45,000 children under the age of 15 develop epilepsy each year.
  • In 70 percent of new cases, no cause is apparent.
  • 326,000 school children through age 15 have epilepsy.
  • More than 300,000 persons over the age of 65 have epilepsy
  • 70 percent of people with epilepsy can be expected to enter remission, defined as 5 or more years seizure free on medication.
  • 10 percent of new patients fail to gain control of seizures despite optimal medical management.
Epilepsy is the most common neurological disorder.  Educate yourself, and find ways to help others dealing with Epilepsy, you will learn much from them.