This “In Their Own Words” essay was submitted by Loary Bartlett of Owensboro, Ky.
My son Zakk was just diagnosed this May with PDD-NOS, high functioning autism, but the story does not stop there. It began in December 2005, when my mom and I recognized that my son was beginning to lose his balance and his eyes were dancing in his head. Immediately, my husband and I took him to the local pediatrician’s office, who referred us to the children’s hospital in Louisville, Kentucky, where they treat this kind of stuff. We had no idea what we were going to endure for the next four years of our lives.
It turned out that Zakk had cancer, neuroblastoma, in his pelvic area and a condition called OMS (opsoclonus myoclonus). OMS is a rare neurological disease which includes symptoms like dancing eyes, jerking muscles, loss of balance, loss of gross motor skills and loss of speech. To this day, my son has not regained speech. We have been told by the doctor that if he does not retrieve it by the time he is seven, he will never talk. May of this year, he was finally diagnosed with high functioning autism.
You’re probably wondering, how in the heck has my family survived? Sometimes I wonder that myself, but with help from family and friends and a open mind about what is happening in our lives, we are able to keep our heads above water, barely. The one thing I keep telling myself is, DO NOT QUIT fighting for Zakk; he is a wonderful boy and when you meet him, you can see that in his smile. As long as Zakk is smiling and laughing, I am happy, and that is the only thing that I worry about.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
This past April, for the first time in my life I learned what it truly means to live in a democracy. Since the start of 2010, our group of Autism Speaks volunteers had been in our state capitol for months working diligently with members of various House and Senate committees on a matter near and dear to our hearts – autism insurance reform, because we believed Kentucky’s children with autism deserved better.
After months spent in the capitol’s hallowed halls talking to legislators, testifying at hearings, and countering the insurance industry’s iron grip on insurance policy in the Commonwealth of Kentucky, we emerged on March 16 with a unanimous vote on the House floor in favor of our bill, House Bill 159. That victory was sweetened when, 16 days later, the Senate also voted unanimously to pass HB 159!
Until this experience, I held an image of all special interest lobbyists and politicians in an unfavorable light, as many of us do. I am a veteran reader of John Grisham novels about big tobacco, the pharmaceutical industry, and, of course, the insurance company lobbyists who, in these novels, try to manipulate politicians. These were the horrible images that immediately came to my mind. However, after many months of working closely with a special interest lobbyist, I became very aware that they are not all bad men, out to dupe the public or our politicians into passing unfavorable laws. In our case, this image could not have been more wrong. Our lobbyist, Bart Baldwin, spent countless hours with us, guiding us through the delicate, chess-like maneuvers of professional politics. He laughed off our rookie mistakes and, in the same way we teach our children, he modeled appropriate behavior and language for us to use in our conversations about autism insurance reform with members of the state legislature. Bart is a true defender of the rights of our children with autism, as are so many other lobbyists just like him, who work for the passage of good public policy and the betterment of all society.
We were also fortunate to have had two excellent champions for our cause in the House – Representative Jeff Greer and Representative Scott Brinkman. While neither of these men has had to experience the financial drain that a full-time applied behavior analysis (ABA) therapy program puts on a family’s finances, Representative Brinkman is the father of a grown son with autism and did engage in other costly treatments. Both Representatives had compassion for our issue and moved forward with fervor on behalf of our “insurance is the answer” solution.
Thank you, Bart Baldwin, Representative Greer and Representative Brinkman! And take that, John Grisham!
To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda please visit www.autismvotes.org.