Government Reform Committee
April 6, 2000
Autism - Present Challenges, Future Needs - Why the Increased Rates?
Mr. Chairman and Members. I am Jeana Smith. I live in Denham Springs, LA with my husband Darrell and our four children... 5 year old genetically identical twins, Jesse and Jacob, Garrett who is 3 and our grand finale' Julianna, who is 16 months.
Darrell and I have always loved children. For six years we tried, unsuccessfully, to have a child and decided that it simply wasn't meant to be. To our complete surprise I found out that I was pregnant with twins - a double blessing!
Perhaps, because we had tried so hard to have a child, I took especially good care of my body while I was pregnant with the twins. Our identical twins were born right on time and completely healthy. We were absolutely thrilled. Our family was perfect.
One month later we found dark blood mixed in Jacob's diarrhea. Jacob had never had diarrhea before. We immediately took him to the doctor who assured us the blood was from a rectal tear. He mentioned that in the chaos that generally follows the birth of a baby, much less twins, we had been released from the hospital without vaccinating the twins with Hepatitis B. He wanted to vaccinate Jacob right then. We questioned him because it did not seem right to give a potentially ill child a vaccine, but he convinced us that it was routine and safe. Not to worry.
Two months later, Jacob received his second Hepatitis B vaccine and Jesse his first. On this same day Jacob and Jesse both received their first DTP, Polio and Hib vaccination. From that day, Jacob was constantly coming down with one ear, respiratory or sinus infection after another. Jacob was constantly on antibiotics. As his mother, I was heartbroken to see him sick or in pain practically all the time. As a new mom, it was embarrassing and frustrating to have a child that was always ill. I knew I was doing everything I could for him, and couldn't understand why he continually ill.
Concerned, we asked our pediatrician and he explained that Jesse was the dominate twin, and this was perfectly normal for Jacob, slightly smaller, to have a weaker immune system and to be prone to common infections.
Jacob met every developmental milestone that first year right along with Jesse. They were two peas in a pod and did everything together.
At only 16 months of age Jacob and Jesse received their first MMR vaccine, along with their fourth DPT, fourth Hib, and their third Hepatitis B. The following 24 hours both twins slept most of the time with 100 degree temperatures, in spite of receiving the recommended dosage of Tylenol every six hours. Just days later, Jacob began exhibiting strange behaviors. He was no longer excited or responsive when Daddy came home from work. He became preoccupied with certain toys. He would spend long periods of time studying the way their wheels would spin or whether or not they were lined up just right. Any attempt to interrupt or distract him was met with great resistance and an eventual fit. During this time, Jesse went along with business as usual.
Back to the doctor we went again, this time with very serious concerns about the growing developmental difference between Jesse and Jacob. And once again, we were met with the dominate twin theory. Jacob would probably be more quiet. Jacob would probably want to play by himself more often. "Jacob is fine, stop worrying."
Finally we could not stand the undeniable difference in their language and communication skills. Something was most definitely wrong with Jacob. He could not express even his most simple needs or wants. He couldn't ask for juice or something to eat. Jesse was chattering constantly. And at times, Jacob was so withdrawn that we absolutely could not reach him.
In a waiting room, in front of several other parents, we received Jacob's first official diagnosis. The Director of LSU's Speech and Hearing clinic callously and simply stated, "Mrs. Smith, Jacob is autistic. There is nothing that we can do for him today. You will need to call back and make an appointment to see one of our speech therapists." I will never forget the day I heard those devastating words, the ones I knew were coming, but words I would not allow my heart to tell my head. I walked out of the office with Jacob in my arms, sobbing and bewildered. THIS IS COMPLETELY IMPOSSIBLE my mind screamed. Autism is genetic and Jesse is fine. What is going on with my baby?
Because we were facing the overwhelming news that our perfect-looking son had a serious life-long disability, the word of one "expert" was simply not good enough. We continued seeking answers. Three more diagnosis' quickly followed.
Jacob is a beautiful child who has abnormal sleep patterns and has lived with continuous physical pain. His lack of sleep keeps me up all hours of the night, and by the time I finally fall asleep, it is time to wake the kids up for school and start the day. We are constantly working with Jacob to help him understand the outside world so that we can maybe go to the grocery store, the mall, the gas station or McDonald's without him getting hysterical from sensory overload from all the fluorescent lights and sounds.
What may sound like water dripping to us may sound like a massive water fall to an autistic child. What may sound like squealing tires to us may sound like the Indy 500 up close to a child like my son. On days that he is "overloaded" from sound, colors or lights, we can't go anywhere. Autism does not only isolate the child that it affects. We can't take the family out to dinner or out to have fun. When the other children may be waiting in anticipation to go have a day out with mom and dad, one of us will have to stay home with Jacob because he is so agitated. If one child has a school program and Jacob is frustrated, then we have to see that crestfallen look on the child's face because both mommy and daddy cannot go, since one has to stay with their brother. We know if we take him in public, there will be a scene. Little things such as this "rob" life's enjoyment from our other children.
Unlike most parents of autistic children, I don't have to wonder what my child would have been like. I see what he would have been through Jesse every day of my life. I see Jesse excelling in school, and his social activities. He will be starting a tee ball team this summer. I will have to find a babysitter to watch Jacob so that our family can attend Jesse's games.
This may not seem like a lot to some people, but not being able to do things together is not fair to the other children in the family. We have had to explain to Jesse and Garrett what Autism is. That is not an easy concept for two small children to understand. And it is not easy knowing that someday when my husband and I are gone that one of our children may have to take care of Jacob for the rest of his life. We should not have to prepare our children for that possibility. But we have to think ahead. What happens if Darrell and I go somewhere together and something happens to us? Who will take care of Jacob and see to his needs? Who will understand what he is going through? Who will defend Jacob when we are not there to do it and he cannot do it for himself? Who will understand his frustration if we someday aren't around? These are things that keep us, as parents, awake at night worrying.
For us, there is no denying that in Jacob's case of autism, the answer does not lie in genetics but in a catalyst. The thousands of hours of research that we have spent searching and retracing his regression continue to point to the fact that the road to Jacob's autism began when his immune system was damaged by the Hepatitis B vaccine he received when he was ill. The final blow was the adverse reaction to the host of vaccines he received by 16 months. We are certain that for Jacob, the catalyst was his vaccines.
With Jacob's initial diagnosis, many doctors and professionals suggested that we put him on medications designed to mask autistic behaviors. WHAT AN OUTRAGE! To give our small child drugs to cover up what was actually happening inside his body did not make sense. We wanted to find out what his body was doing and treat that first.
We were blessed with a wonderful Doctor in Louisiana, Dr. Stephanie Cave. She ran blood and urine tests to find out what amino acid, vitamin and mineral deficiencies and immune system dysfunctions Jacob had, along with his exposure to heavy metals, invasive fungal infections and extensive food allergies. The results were shocking. It was amazing this little guy was able to do as well as he did.
After placing Jacob on a structured, nutritious diet, supplementing his deficiencies and working to restore his immune system, Jacob is giving perfect eye contact and beginning to initiate and interact in conversation. He has made incredible strides. Jacob is still autistic. There is no doubt about that. But he is only five. The progress we have seen inspires us to shout from a mountaintop the hope available to so many children! For him, it is evident that autism is not always a traditional congenital genetic disorder. It can be an acquired syndrome. And that is why I am here today.
There is a huge epidemic of autism in this country with countless parents that believe, as I do, that their child's autism is the result of a vaccine reaction. I have talked to thousands of parents and they know their children! They are not looking for a scapegoat. They are looking for answers and truth. They tirelessly look at every possible reason their perfectly normal child could slip away so quickly. If parents were looking for an excuse for why their child could be snatched away so quickly, they certainly would not choose to put the blame on something they did to protect their child and keep them from harm.
I can't bear the thought that, after waiting so long and being so careful carrying my twins I was so easily persuaded to immunize Jacob without knowing all I should have. I should have taken the time to find out his risk of contracting HepB, I didn't. I should have found out about all the toxic metals that are used to manufacture the vaccines. I didn't. I should have known back then what I do now. I didn't. I trusted his pediatrician, I trusted the CDC. I was persuaded to believe I was doing the best thing I could do to protect my child.
I can assure you that this epidemic will not go away until we address it. Every scientist, doctor, researcher, parent looking for answers and resources should never have to question where their funding will come from. It has to be here now! If you don't deal with this today, how will you deal with it in 15 years?
Three years ago when Jacob was diagnosed, autism affected at least 1 in 500 children. Now it affects one in 300 children nationwide. In some places it affects as many as 1/127. Today, Coast to Coast the school and service systems are over run. In California alone the tax dollars will cost 2 million dollars per child diagnosed with autism. Last year alone almost 2,000 children were diagnosed with autism and added to the already .... system. We cannot run from this. The numbers are rising. The numbers are real. Autism and the children, and adults and families affected by it are living in the towns and cities of every person in this room.
I implore you to act now. You do NOT have time to wait another year for another hearing and another panel of parents and experts to advise you that an epidemic is waiting in the wings. We are swiftly and silently losing a generation of children to a disease that could possibly be avoided. While we are taking our children every afternoon to the therapies that they need to make it through the day, or charting the 15 supplements that we have to give them in order to keep their body chemistry afloat, or monitoring every crumb or drop that enters their mouth in the hopes that it does not contain a trace of gluten or casein, or educating the teachers that work with our children everyday, or fighting the school system to make sure that our children get the education that they are entitled to, or arguing with the insurance company about the fact that yes that very expensive test was absolutely necessary in determining the best course of medical intervention for my child, or working two jobs to pay for the multitude of services that our children need because the government can't keep up with the demand, we need YOU on the front lines demanding answers from the medical community. We need YOU on the front line requiring the pharmaceutical companies to come up with the research that they should have done decades ago. We need YOU to fund the independent scientists so that they can maintain their objectivity in investigating the possibility of a connection between vaccines and autism. We need YOU to help fund the research that will ultimately lead us to a cure for these kids.
Please, let this country be the leader in seeing the percentage decrease not increase.
Just like Jacob, these children are not without hope. They can get better. Jacob is doing better than we ever imagined. But we have fought, and scratched, and struggled to get him the things that he needs. A child with Autism is a puzzle for us all. And each piece of the puzzle is incredibly important. But closing your eyes and relying on 40 years of medical rhetoric that has dismissed autism as a mere genetic, psychiatric disorder will keep parents like me from having the answers that we certainly deserve. Good science research into the autism/vaccine connection must begin NOW in a serious and accelerated way, with independent research institutes like the M.I.N.D. Institute at U.C. Davis leading the way.
Every night Darrell and I tuck two beautiful little boys into bed. On the outside they look just the same. Their bed covers and pajamas match, their cheeks and hair match, There is nothing on their body that does not match, even their toes are the same. As Darrell and I sit in between their beds we talk with Jesse about his day. He gives us all the details of his day at school and tells everything he did with his friends. He talks about how excited he is for the birthday party at his cousins house this weekend. He talks with Darrell about working on his batting swing to prepare for T ball this summer. As he drifts off to sleep, we turn to tuck in Jacob. We know, even at only 5, Jacob will never be able to enjoy the simple pleasures of childhood the way Jesse does. He will never be on a sports team. He cannot enjoy the fulfillment of birthday parties or friends. The difference is real! We know Jacob's autism will not go away! When they fall asleep, we once again can see two beautiful matching faces and know what should have been. It is the only time their faces match. Even though they are identical, Jacob's countenance left when he was 16 months old. The light behind his eyes was replaced with a blank, lost, bewildered stare.
I cannot count the times Darrell and I have cried quietly in between their beds while they sleep. We cannot imagine that anyone else could understand such grief. Tomorrow morning, or perhaps, in the middle of the night we will be awakened by the reality of their difference, by the reality that Jacob is autistic.
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