Monday, November 30, 2009

if we had only known...

We went to 100 Drs after Jessica stopped talking at the age of 18 months. Know one called it autism back then. This was 1993. It took almost 6 more years until we got a Dr to say the words autism. Maybe we could have done more, but the people around me know I did all I could. But today more can be done...and the earlier the better!

"Researchers have shown for the first time that if a child is diagnosed with autism as early as 18 months of age, offering the toddler age-appropriate, effective therapy can lead to raised IQ levels and improved language skills and behavior." READ MORE HERE

Thursday, October 29, 2009

today is all I see

There were two enemies pulling me down yesterday. One is called the past, the other goes by the name future. The Dr asked us about all of Jessica’s past diagnosis and treatment. That's almost two decades of struggle. These are not mountains I have climbed...and battles I have won. I am still fighting, and still climb. I will most likely fight and climb my whole life. I do not want to look back, I would like to leave it all behind me. I want to shed the past like a heavy coat...I have no interest in dragging those memories around. At least the memories of a 1000 Dr’s appointments and the fear and grief and loss. And the's scary! I have zero interest in figuring that out. I can not tell you what’s ahead, I only know God holds me. But the meetings with the Dr and judge is about Jessica’s future. We need to own the future legally. But it is not something I can deal with...I do not possess the grace. I only have grace for now. The only way to survive autism is to live in the now. So yesterday was plain awful (a quote from the movie Annie). But the sun shines today because today is all I see. I survive autism one day at a time. It is the only way to do this. Do not look back, and don’t look ahead, just keep your eyes fixed on now. Now is beautiful! Today I look directly into the eyes of Jessica. I do not see struggle…I see love.

Monday, October 26, 2009

my birthday and feeling so sad

My birthday is this week. I turn 48 years old. A Dr comes on my birthday to examine Jessica and declare her permanently disabled and 100% dependant. She turned 18 years old this year. Normally that would make her an adult, able to make her own choices. If we do not strip her of her rights and gain legal custody, she could be a ward of the state. I don't want that to happen. So Weds day we meet the Dr. Later next month we meet a judge. I wish with all my heart she was well, and able to make her own choices. I'm afraid I will be unable to celebrate on wedsday. It will be one of the saddest things I ever have to do. Some things you should not think about. Some tasks should just be done...just do it, and do not think about it! I have no choice, I must just do it. I will celebrate my birthday on Sunday instead. Jessica means gift from God. She will legally become mine until I die. Then she will be Nicole’s. Nicole already knows and accepts this. I'm not sad for me, I'm sad for Jessica. She will lose all her rights. This makes me very sad.

Thursday, October 01, 2009

I don't know where I'm going, but I'm not lost

Last night I sat for nearly 3 hours in a kindergarten chair. It was a very long Parent teacher meeting at Sarah's kindergarten. I learned a few important things, but most of what was covered I could have read in 2 minutes. As I looked around the room I saw a half dozen other parents. Many of them anxious about their babies riding the bus for the very first time. All I could think was how much my legs hurt, and that most of these people are young enough to be my biological children (most being about 24 years old, and I'm about to turn 48). I was so tired. I had spent the entire morning at the heart clinic with Nicole. She has a strange shaped valve in her heart. It doesn't cause her any trouble, but we have to keep monitoring it. She is just fine (Thank God). She has zero restrictions.
Juergen told me Jessica’s teacher called last night. Jess will be doing two different internships at workshops for disabled people. We thought she had 2 more years of school left. I guess we were wrong. This is Jessica’s last year of school. We have to figure out what is next. The choices are not as fun or interesting as the ones Nicole has. I do not know what to do. I'm just going to wait and pray. We will visit Jessica at the workshops and see how she does. Perhaps she will find a place she feels good in. I have no idea what she will be doing, more information will be given to us in the coming months. I can remember the first time I put Jessica on a school bus. It almost seems like yesterday. This morning she was sipping coffee with her breakfast. I have never really known what the future held. I'm just going to keep holding Gods hand, I know he will not get lost!

Sunday, September 13, 2009

Tuesday, September 08, 2009

Jessica is 18

Juergen came home early today so Nicole and I could take Jessica on a birthday shopping trip. First we went to a large market called Kaufland. There she bought a magazine, candy, a new video, and pretzels. She also picked out salad dressing because she wanted a salad this afternoon and we were out of dressing. Funny! The grand total for her big trip was about 15 Euros. Then we went to toys r us. There she wanted a playmoble catalog. That's it. We walked in the store, got the catalog and then walked out. Then we wanted to take her to her favorite fish and chips place. When we got there she didn't want to leave the car. so Nicole and I went and got her food and we drove home. What a funny character she is. She knew what she wanted, but was tired and did not care to spend much time! Thomas also wanted to shop for his birthday last weekend. Actually, he was pretty much like Jess. Once he had his Lego he wanted to go home. He has been building Lego ever since! I want to thank everyone who called, sent cards, or took the time to e-mail Jessica. She got dozens of e-mails. I told her about them and she smiled. It blesses my heart to know my baby is loved.

Monday, September 07, 2009

Happy 18th birthday Jessica

When I was pregnant with my first child Jessica I imagined she would be beautiful and intelligent. She is both. I never imagined she would be silent. But when my baby was 18 months old she lost her voice to autism. She has never recovered and this a great loss. Tomorrow Jess will turn 18 years old. I could fix my thoughts on what I had hoped for her (independence). She will be 18 years old be she still wears a diaper, can not dress herself, can not walk across a street alone. All of this is sad. Unless God intervenes (and I believe God can step in and change everything) Jessica will never be independent. But I do not fix my thoughts on what she can not do. I choose to thank God for all that she is. Jessica is a sweet, sensitive, loving, intelligent, funny young women. She was so brave to get on an airplane and fly to Thailand. She was also brave to swim in the ocean (something she has always feared). She can read people well. She always gives me a hug when I am sad and makes me laugh. Although many of her dreams are trapped with in a body that does not do what it should, she still dreams. And because I’m her mom and I love her I also dream for her. Jessica has a cold, so we will probably not do much tomorrow. On Saturday I hope to take her shopping because she likes that. I’m sorry she can not speak but you do not need words to love. There are no words to say how much I love her. Happy 18th Birthday Jessica, you are a gift to me and your family. May all your dreams come true!

Wednesday, August 05, 2009

Today is what we have

Jessica got to go out to lunch with her teacher and friend Frau Grimm. They had lunch and then did some shopping. She was very excited. I gave her a shower and dressed her nicely before the big event. After the lunch Frau Grimm asked me what plans we had for Jessica. Many people ask the same question. After all, she turns 18 next month. First, she has 2 more years of school. I hope she can learn to write more independently. After school, who knows? I will let God show us what to do when we get there. Frau Grimm says she would be board in the work shop. I am not making any plans. We do not know where she will be in two years. She is making progress, and I do not know what she will be capable of then. My eyes are on today, and today is special. Today she was a beautiful young women going to lunch with a friend. Today was good. I can not define tomorrow. God is good, I will trust him for the future.

Thursday, July 16, 2009

Removing Dangerous Toxic Metals From Our Bodies

Citrus Pectin combined with alginates on the positive clinical outcome of several patients.
Using MCP combined with alginates evolved out of successful clinical trials of Modified Citrus Pectin (MCP) alone, after it had proved effective in selectively removing toxic metals and (most importantly) not affecting the body's essential minerals. MCP and alginates (derived from kelp seaweed) is an improved formulation for a more effective binding and removal of toxic metals, without side effects and the risk of toxin re-absorption and redistribution in the body.

MCP is considered safe and well tolerated.
Dosages range from 6 to 30 grams per day
in divided dosages; a typical dose is 5 grams
three times daily.

is the link to this work.


I was listening to Beth Moore interviewed on Christian TV today. She was asked why she thought God healed some people from addictions instantly, and others over time? She said something that I think applies to all of our lives. She said it depended upon what God would teach us. If he wants to show us his supremacy, he will do something immediate and if he wants to show us his sufficiency, he provides little by little (daily bread). I have sought God for years to heal Jessica from autism. I believe nothing is impossible for him, he is supreme! But God has shown me he is also sufficient. The only time I get into trouble is when I think too much about tomorrow. But God is so sufficient to help us every day. I know this very well.

Friday, June 12, 2009

Our vacation to cyprus


Our family went on vacation in North Cyprus. Jessica was so full of fear, they almost kicked us off the flight. Boy did I pray!


She spent a good deal of time in the kitchen of our villa. Finally on the last day we got her to swim. I guess better late then never!

On one of our last nights we went to dinner. Jessica was such a lady at that dinner. She handed me her bread to cut in small pieces. She seemed very aware of where she was. Her behavior was wonderful. I wish I could say the same for two of the other kids! Juergen said if you have 5 kids one of them is bound to make waves. Jessica was wonderful!

My favorite photo was taken when Jessica sat on the beach. She felt really relaxed as long as she didn't have to be close to the water. For some reason she is afraid of the sea. Isn't she beautiful!

Tuesday, April 21, 2009

3 days of flowers

I took Jessica to Holland for 3 days to see the flowers. She hates change, I guess you can see that on her face. What you don't see is how proud she was that she stepped out of her comfort zone. She pulled me towards the flowers, and even tried to pick one for me. It's so hard for her to go to a new place, but it's also good for her. She is not a flower among many common flowers, she is a rare beauty. She is an extraordinary beauty!

Jessica in Holland




Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Emily Perl Kingsley 1987

Thursday, April 02, 2009

Autism day


Every day is autism day for us. I forgot that today was International autism day. I wish there was no need for such a day. I wish the kids were all healthy. But today I kissed my girl, and I loved her just as much as I always do. She reminds me life is a gift. Her smile is a gift. Her laugh is a gift. I may never have a conversation with Jessica this side of heaven, but I'm willing to wait. I can not imagine any sound in heaven being half as sweet as the voices of the children who spent their days in silence. It will be a time for me to be silent...I wouldn't want to miss a single word.

Sunday, February 22, 2009

Thursday, February 12, 2009

Vaccines didn't cause autism, court rules HERE is the CNN story.

Jessica was also a healthy normal little girl. She was happy, social, and spoke about 30 words until she got 5 vaccinations in one day. At the time she was sick, and taking antibiotics for an ear infection. I don't know if vaccinations caused her autism but I know they didn't help. She lost all her skills with in days of those vaccinations. Jessica has been on very good diets for years. She is not nearly as sick as the girl in this video (thank God). But Jessica can not talk and she still wears a diaper. She can not even cross the street with out help. Jessica is pretty easy for us to take care of...but the fact is she is 17 years old and needs care 24 hours a day, 7 days a week. I'm sorry that this girl did not win her case. They don't want pregnant women to eat fish because it has mercury in it. Why in the world would they give Mercury to a baby with a developing brain and say it has zero affect?

Monday, February 02, 2009