What is autism?

Autism (sometimes called “classical autism”) is the most common condition in a group of developmental disorders known as the autism spectrum disorders (ASDs). Autism is characterized by impaired social interaction, problems with verbal and nonverbal communication, and unusual, repetitive, or severely limited activities and interests. Other ASDs include Asperger syndrome, Rett syndrome, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS). Experts estimate that three to six children out of every 1,000 will have autism. Males are four times more likely to have autism than females.

Autism month

April is Autism awareness month. There is already a great deal written about it on the Internet. I saw an ad on CNN about the scope of Autism. It made me cry. I really can not say why. I don't really think it was because Jessica has Autism. I think it was sadness about all those other children who have it...and all those families affected by it. Autism has become far to common, yet it has more then a common impact upon our lives.

http://edition.cnn.com/SPECIALS/2008/news/autism/

Extreme Home makeover

Extreme Home makeover helped a family that has 5 autistic kids. I wish I could also get an extreme home makeover!

Dog helps autistic girl

Helper dog helps an autistic girl.

No day in court

I’m very sad today. Now and then I get hit by a wave of sorrow. I feel like I could just drown in it. God lift my head up so that I can breath. I watched a short report on Larry King on CNN. It was an interview of a family whose daughter has autism. They just won a court settlement against a drug company who put mercury in the vaccinations that may have caused this girls autism. There are over 5000 families waiting for their day in court. Our family will never receive justice. There is a 3 year statute of limitation on law suites against drug companies. So little was known back in 1993 when Jessica first received the vaccinations that took away her voice and her future. It took over 5 years for us to even learn she was on some kind of autism spectrum. I’m grateful if the companies are forced to take mercury out of vaccinations. I’m grateful if children and their families receive at least some small form of compensation. Only God himself can wipe away my tears and make up for all I have lost. There will never be any justice for us on earth. I need to remind myself that God is very good. He is the God to those who feel powerless. I am not against doctors and vaccinations. Doctors saved Jessica’s life when she was just 3 months old with a heart condition. Vaccinations save millions of people from sickness. It is the desire to make cheap drugs with harmful preservatives like mercury that I am agents. It was the drug company’s desire to save $1 per vaccination that drove them to use mercury. My daughter could speak when she was just 6 months old. Now she has no voice, no friends, and very little future. My heart hurts…and we will never receive our day in court. Who ever said life was fair? It is not fair. It is a short life, and it will soon pass away. It is a very fragile thing. My sweet baby was broken. It is nothing that can be corrected. No court date or money could make up for it. I am glad for the families that will receive money. Autism cost so much money to treat. Nothing could replace our children. I feel so much loss today. Something like this makes me look at what I have lost. I guess what I need more then anything is to fix my eyes on everything else I have. I am overwhelmed by the goodness of God. Even without a voice Jessica is a treasure to me. How we feel often depends on where our focus is. In the end I will say I am rich. I have been made rich. I have much more then I deserve. I am blessed.

finding her voice

Here is a news story sent to me by my friend Heather about an autistic girl who learned to use the computer to write. I love the voice generator on her computer. This kind of sound scares Jessica, so I don't think she would ever use something like this. Perhaps we can try it? Jessica does write, but not often. I would love to communicate more with her. You have no idea what a gift words are until you do not have them.

Mercury Toxicity & Autism

A world with out Autism

http://www.whatkindofworlddoyouwant.com/videos/view/id/408214

Jessica bird

Jessica loves to rip paper. Over Christmas we gave her a large number of science magazines to read and rip. It was part of her Christmas gifts. I pick up a very large bag of old paper from her floor every weekend. Don't get all upset with me about the trees...I try to give her really old magazines no one wants anyway. She often sits in this paper. I was changing her for bed. I said "Jessica, you look like a big bird sitting on your nest". She smiled at me and said very clearly "bird"! So now I'm calling her "Jessie bird". She loves it!

Autism the Hidden Epidemic, on MSNBC .

Autistic teen who wandered off during hike found alive, this story makes me want to cry. Jessica can not talk. If she got lost, I would be so afraid! Thank God he is safe!

Jessica's 16th birthday

Today was the 16Th birthday of Jessica. I took her shopping and let her buy what ever she wanted. She was very sweet, and happy. She held my arm in the store, and kept hugging me. She has simple taste. I bought her two books, and a DVD (all Disney stuff). Her grand mother e-mailed her and her teacher called on the phone. We sang happy birthday to her at breakfast. There were no parties. I'm not thinking about the past 16 years, or considering her future. Today I'm just thinking about what a gift she is to me, and trying to make sure she enjoys the day in her own special way...mostly isolated but emerging from time to time for a drive with her dad or a shopping trip with me.

Toy story in French

I was at a 2ND hand shop yesterday. They had the video toy story, one of Jessica's favorites. I picked it up for one euro. When I got home I realized it was in French. Jessica loves it! She wants to watch it day and night. You can hear her laughing out loud and the whole floor shakes because she is jumping up and down for joy. Could she be learning to speak French? She knows the movie by heart in English and German...and now French!

My teacher, my child

It's been a while since I've written on Jessica's blog. It's summer vacation. I try to post every day on my other blogs...but run out of steam for this blog. I'm a little emotional today. We are taking a short trip to Juergen's parents house this weekend (about 5 hours by car). It should be a wonderful family gathering. We are celebrating Jessica's grandmothers 70Th birthday. I would be totally happy, but grandma is sick. She has brain tumors taking over her brain, and she can know longer have surgery. I don't really know how often I will be taking this trip North. The kids (our 5 kids) are too stressful for Juergen's mom. I've been really sad at the idea of not having much more time together. I don't want to be all sad at the party, so I'm trying to cry now...it's not hard, the tears are right there.
I just re read the last post I wrote about Jessica and loss. Some how the reality that this is all grass helps me. Beautiful but fading...

Crying over the loss

Last night I was waiting up late while Juergen picked our daughter Nicole up from school. Her class had gone to a theater, and she was coming home at midnight (late for our 13year old). I was watching CNN just waiting. There was a news story about Andrew Wakefield, a British Dr who made a possible connection with the MMR vaccination and Autism. There were dozens of parents with Autistic children standing in support of Doctor Wakefield and his team. They wore t-shirts that read 1 in 100, symbolising the very large number of children affected by autism in the UK. All of a sudden I began to weep. I remembered the day I signed the vaccination release form, authorizing the 5 vaccinations in one day that pushed Jessica over the edge into this dark world called autism. It kills me that she was "normal", and then she was not. It hurts so bad that her sickness may have been preventable. You could never explain the deep loss I feel. She is almost 16 years old and needs full time care. She still wears diapers, and can not cross a street alone. I'm grateful for her smile, and her laugh. I am happy she is alive, but some times the weight of the loss hits me hard. All I can do is cry. God picks me up and starts to carry me once more. It is only in light of eternity any of this makes sense. We are all grass, and the flowers of the field. We wilt very fast. Why do I hold so dearly the flowers that are wilting?

DAN DR

We took Jessica to see a DAN (Defeat Autism Now) Dr yesterday. She is the only DAN Dr in all of Germany. I've read the DAN protocol, listened to DAN conference tapes etc. but this was our first trip. The DR lives in a small town about 3 1/2 hours North West of us. That's 7 hours driving for a 2 1/2 hour visit. We were all very tired by the time we made it home. I think it was worth the time! We will have a large number of biomedical tests run. Jessica may or may not need to start a special diet. We have done the Gluten Free Casein Free diet for 5 years and the Specific Carbohydrate Diet for one year. Right now she isn't on a diet. If she doesn't have a leaky gut,or a Gluten morphine, casein morphine problem we may not need to do a special diet. If we must re do a diet, it's the SCD I prefer. She will also be detoxed for heavy metal, but only after the diet issue is settled. Jessica sees the Dr again in September. Jessica is almost 16 years old. It's not realistic to believe any medical help is going to "cure" her from Autism. Still, we believe we should treat every medical issue she has. Over all it will help her feel better and preform at a higher leval. I still pray that God will heal Jessica. If God can raise the dead, He can heal autism!

The fall into the pit

There are pot holes and there are pits. To this point I had never really fallen into a pit. I had no idea how to handle what was happening, no idea at all. When you run over a pot hole, it shakes you up a little. Some times the pot hole is so large, it can even cause some car damage. That would require a day or so in the shop. But a pit is different. You fall into a dark hole, and when you get up to inspect for damage, you often fall off the ledge even further down. If fact one of the scariest parts about falling into a pit is being in the dark, and never knowing when and if you have really hit the bottom. When Jessica was 18 months old she had 5 immunization shots in one day. I remember asking the nurse if it was a problem that Jessica was sick, and taking antibiotics for an ear infection. I should have used my best instincts and said "no" not today. But they were the medical professionals. I was just a first time mom. What could go wrong? But with in 4 days things went terribly wrong. It has be wrong for 14 years now. Jessica lost her voice. I thought we would just spend some time in the shop, get the car repaired and be back on our way. Instead of getting on the road, I have had the challenge of learning to live my life inside this hole...and I know now I may never be allowed to recover from that fall.

What was she like?

She was beautiful. I know everyone thinks that about their child, but it's true. Strangers would stop me on the street, and in the super market. Her hair was blond and her eye brows bushy and dark. Her large eyes were an intense blue. They were deep, like the Mediterranean sea. She loved to flirt with people. We would sit in restaurants and Jessica would capture the attention of everyone around us. She was charming and captivating and funny!
Jessica met or exceeded all her early baby mile stones. Her first words were spoken when she was only 6 months old. We were in Holland on a vacation with Juergens parents. Jess was hungry, and I wasn't feeding her fast enough. She shouted in a loud and demanding voice, "Mama"! It was so loud and clear, Juergen and his parents could hear her from the next room. We were all amazed to hear her speak her first words at age 6 months. None of us knew what a miracle those words were. I can count on one hand the number of times I've heard her speak my name, since she lost her voice. It's really amazing what we all take for granted. Everything in life is a gift. Every word is a gift.

Jessica's Birth

I remember the night before Jessica was born. She was two weeks over due. We had visitors from Germany. They had hoped to see our new daughter. Instead we were out playing miniature golf. I had basically given up on ever having her. Then it happened. I sat up in bed around 1 am and just like a water balloon crashing to the pavement my water broke. From that time on, it was surreal. The drive to the hospital, the heavy contractions, the breathing. She was born the following afternoon in Kaiser Hospital in San Diego. There were a parade of Doctors and nurses. Every few hours the shift would change, and I would have a new Doctor and nurse, and another dozen medical students filing past my half nude body. I guess if I wasn't in so much pain I would have been embarrassed to have so many strangers in my room. That would have required losing my focus. My total focus was on her birth. Nothing else mattered. It never occurred to me she would be born on a wave of autism. In 1991 little was known about autism. Jessica was born with 4 different heart defects. This came as a huge surprise to us. When she finally had surgery at the age of 3 1/2 months, I was certain this was the greatest trail of my life. I've learned since then that that was merely a walk in the park. How could I have imagined myself to be so strong? I think looking back at that simple time I was living in a green house. God wanted to teach me to trust him in the desert. But just as he provided strength, guidance, and provision to his people Israel in the wilderness, God has also been with us. I have been driving Jessica Taxi for 16 years, but God is in the car with me. He often takes a hold of the wheel. When I feel like I can not move even one inch further, He adds some gas to the accelerator. We have come a million miles since those early days our beautiful daughter lost her sweet voice.