Autistic girl with DiGeorge Syndrome memorized Coppelia Ballet!!!!!!

Disneyland Paris

We dropped the kids off at camp and drove to Paris. The drive was very nice. The girls were wonderful in the car. Sarah had an I-pod to play with, and Jessica could watch a movie. Juergen and I could talk. It was nice. We walked around the shopping mall next to our hotel. Then we checked in. The hotel was clean and actually nice for the cheap price. I would gladly recommend it to anyone traveling to Paris on a budget. But Jessica would not sleep. Juergen and I were both so frustrated. She would not sleep until 3am. Then she woke up at 8am. So we should have just said no to Disneyland. I should have dropped Juergen and Sarah off at the park, and saved the 15 Euro parking fee, plus the 10 Euro dog kennel fee, and the 60 Euro entrance fee. But we wanted it to work. So we tried. And Jess was awful. She was just too tired to handle it. So Juergen and I took turns with Sarah in Disneyland and Jessica in the car. And we were angry and disappointed. But I could have driven to Monet’s garden in the North of Paris. I could have chosen a better direction considering Jessica’s condition. I was not very wise. I wanted it to work and I just didn't read the situation with open eyes. But I did get good pictures of Sarah in the park. And Sarah was so wonderful. She loved Disneyland. And Juergen and I both got to share good moments with her there. And Jessica was happy in the car. And the trip home was another very good talk with Juergen. So over all it was worth the trouble. I'm glad we did it. I just need to be willing to adjust my plans if Jessica can not fit into my plans. It would have been better for all of us to not push it. Autism is the pits, and we are just imperfect people trying the best we can to live a normal life. Considering the circumstances, I think we do OK. But it’s pretty hard sometimes. I can not lie, it really can be frustrating. But I love Jessica. And I totally love Juergen because he still made it awesome just be walking the hard road with me. And I never saw Sarah so patient and good before. She reminded me of Nicole. She really was awesome!

Teacher/Bully: How My Son Was Humiliated and Tormented by his Teacher an...

apps for autisum

I read this on CNN and I cried

A heart shattered by a glimpse into autism By Rob Gorski, Special to CNN updated 7:49 AM EDT, Mon April 16, 2012 HERE is the link Rob Gorski is father to three sons with autism and blogs at "Lost and Tired" Gorski encounters a homeless man brushing ice and snow off his windshield Homeless man reminds Gorksi of what could happen to his children Editor's note: Rob Gorski writes for "Lost and Tired," where he blogs about the reality of raising three boys on the autism spectrum. He and his wife, Lizze, have three boys, Gavin,12, Elliott, 6, and Emmett John, 3. Canton, Ohio (CNN) -- As the snow started falling, I drove to Giant Eagle to pick up some groceries. With a storm on the way, I needed to stock up on supplies in case we got snowed in. I pulled into the parking lot of the store and found a spot right in front of the entrance. I sat there for a few minutes, collecting what I needed to take in. As I reached over to the passenger seat to grab my wallet, I glanced over at the car next to me through the passenger window and saw three people who were loading their groceries into their car. I also saw a large man standing there, reaching over the hood of their car. He was wiping the snow and ice off the car's windshield with his bare hands. The owner of the vehicle looked at him with an icy stare that seemed to say, "How dare you touch my car?" She seemed disgusted just breathing the same air as the man cleaning her windshield. Instead of asking him to stop or giving him a few dollars, she quickly climbed into her car and gunned the car forward so fast the man was knocked back. A few seconds later, the man got up, walked to my car and knocked on my window. I hadn't even processed what I had just witnessed. Now he was coming over to me and I had no idea what to say. "Please, not now, I just want to get what I need and get home," I thought to myself. Where I live, it's common for people to approach you for money. I took a deep breath and started to open the door. The man opened it the rest of the way, being careful not to hit the car next to me. This man stood well over 6 feet and wore sweatpants, a light flannel shirt and boots that were left untied. It was roughly 20 degrees outside and he was clearly not dressed for the cold. In a rather abrupt voice, he broke the silence by asking, "Can I have your change?" I scooped up the change I had in the car and gave him everything I had, which was only $2.37. After handing him the money, I explained that I didn't have any more. Autism rates increasing, but why? CDC: 1 in 88 American kids has autism CDC: 1 in 88 kids has autism Study says 1 in 88 kids autistic "I'm cold and hungry. Can you take me to the shelter?" he asked. I noticed his hands. They were at his side but his fingers moved silently up and down, as though he was playing an invisible piano. He spoke with great difficulty -- in a stilted, mechanical fashion and his face showed no emotion. I never felt threatened, although he stood in my personal space about 1 or 2 feet in front of me. He would occasionally look in my direction, but never at me. Although he stood so close, he avoided eye contact. "Can you drive me to the shelter? Because it's warm there and they have food," he asked me again. "I'm homeless and very hungry," he said. "I'm not lying to you. If I lie to you than you might not help me." I really didn't know what to say, because I wasn't comfortable driving him anywhere. Then he asked me to buy him some food and gloves. I thought about what to say. I knew he would have a hard time understanding: I don't have any money. My family is struggling to survive each day. I was trying to figure out how to explain to him that I couldn't help, but I was at a loss for words. Then something happened that shook me to the core and completely broke my heart. As I was trying to tell him no, he looked me in the eyes. All of a sudden, I was looking at my oldest son. My wife and I have three boys with autism; the oldest is 12. Looking at the bare-handed man was like looking through some special window at my oldest son, 20 or 30 years from now. It was like being run over by a freight train. I was washed by a wave of clarity and my eyes and heart were now open to what was happening in front of me. Suddenly I was transformed from a person trying to avoid the whole situation into a parent, filled with compassion and understanding. He again asked me to buy him food because he was hungry and gloves because his hands were cold. Something about him was so familiar. Yes, I would buy him some food. I would never deny any of my children food if they were hungry. He smiled in my direction and took my hand without looking at me and led me into the store. His hands were cold, hardened and chapped. I noticed the looks people gave me as I walked with the bare-handed man into the grocery store. His clothes were old, beaten up and had a fowl odor. He asked me to buy him a gift card so he could buy food later, when he would be hungry again. So we walked over to the rack and he picked out a Giant Eagle gift card. I put $25 on the gift card. I gave him $25 in cash and asked him to please buy some gloves and a bus ride to the shelter. He asked for the receipt so "When the police stop me, I can prove I didn't steal this." He told me again that he wasn't lying. I told him I knew he wasn't. U.S. kids and autism Overall: 1 in 88 U.S. kids have autism; up 78% from 2002 Total: Estimated 1,000,000 children with autism Boys: 1 in 54; up 82% from 2002 Girls: 1 in 252; up 63% from 2002 Non-Hispanic white children: 1 in 83; up 70% from 2002 Non-Hispanic black children: 1 in 98; up 91% from 2002 Hispanic children: 1 in 127; up 110% from 2002 Symptoms typically apparent before age 3 Source: Centers for Disease Control and Prevention He turned to walk away, stopped and looked in my direction as if to say "Thank you," but didn't. What he did said more than a simple thank you. He showed me his eyes again for a brief moment before he turned around and left. I was beside myself with grief. How could someone I didn't know have such a profound effect on me? It took everything I had not to burst into tears. I just couldn't shake just how much the bare-handed man reminded me of my oldest son. Their eyes, mannerisms and even the way they speak were so similar. My son struggles with boundaries and personal space simply because he doesn't understand, not because he wants to be invasive. All I could think was, "How does this happen?" I was smacked in the face with reality. Related story: Parents of autistic children who "take nothing for granted" Someday I won't be here to take care of my children. What if this happens to them? What if they are the ones wiping off a windshield with their bare hands and almost being run over by someone who doesn't care? I can't let that happen. I won't let that happen. Since that cold February day in 2011, I have met the bare-handed man on a few more occasions. Along the way, I learned that his name is Tim and that he remembers me. Tim has shown me just how much work still needs to be done. I would like to think that my experience that day -- the way people treated Tim in that frozen parking lot -- was an isolated incident. Sadly, I know it's not. Things like this happen all the time. To this writer and father of three beautiful boys on the autism spectrum, this is simply unacceptable. We need to do what we can to help the world better understand both children and adults with autism. I'm terrified of what the future might hold for my children. I have witnessed how cruel and unforgiving the world can be to people who are perceived as different. It is an ugly reality but one I'm working to help change. Please help spread autism awareness, even if it's one person at a time. Remember that the autistic children of today will be the autistic adults of tomorrow. These people need and deserve our compassion, understanding and respect. Let's help to ensure that what happened to my friend Tim in the parking lot of the Giant Eagle doesn't have to happen to anyone else, ever again. The opinions expressed in this commentary are solely those of Rob Gorski.

Ballet

Rose farm helps adults with autism bloom

Better diagnosis, screening behind rise in autism

Better diagnosis, screening behind rise in autism

CCPSO Gardening Australia

Autism signs appear in baby’s brains as early as 6 months

Autism signs appear in baby’s brains as early as 6 months
They could not tell us Jessica had autism until she was 8 years old. This is really great! I wish we had help early.

Maybe a new school for Jess

I took Jessica to an Autism workshop in Heidelberg today. They are in the process of moving closer to us. The place was chaotic because of the move. I had a hard time telling if it was anything for Jessica. The people are nice, but the place it's self was a mess. I'll be able to see the new location in a few weeks. Today Jessica wouldn't even get out of the car. Not a chance! So we just have to wait and see what the new location looks like. The 4 other autistic people there were men. There are more men with autism then women. And I'm not sure how Jessica would be with this situation? And how would they protect her from any potential abuse? You don't want to think anything could happen, but she is a non verbal female in a male world. I would need very good over sight. I'm not 100% sold. The place was honestly a mess. That is most likely because they are moving, but maybe not? So I'm not going to hold my breath. We also have another situation not far from us that we can look at.

can you out grow it

Visit msnbc.com for breaking news, world news, and news about the economy

I think they are just trying to avoid paying the costs of treatment and education.

Autistic Girl Expresses Unimaginable Intelligence

this is Jessica. I'm still looking for someone to teach her to write on an I pad.

girls with autism

Apps for Autism

Jessica can not talk. I'm hoping we can find a teacher to teach her how to use an i pad.
This could give her a voice, and I look forward to hearing what she has to say!

You have to watch this!

This is so exciting I could cry. Jessica has autism. She has a blood flow problem in her brain. If we could have surgery that could increase the blood flow and restore the brain tissue...Oh my goodness!!!! This would be AMAZING!!!!

Brain bypass surgery may help restore lost brain tissue

http://www.ctv.ca/CTVNews/Health/20110415/brain-tissue-bypass-110415/

what if it's not autism?

treating it

diet

diet

diet helpped Jessica but didn't cure her. I would try it.

Controversial Autism Doctor Stands By His Research

Jessica has taught me to live my life

I believe there is a link!

iHelp for Autism

A reader sent me this
http://www.sfweekly.com/2010-08-11/news/ihelp-for-autism/

We want to get Jessica an IPad and see if it doesn't unlock her world.

I've always loved this

God Chooses Mom for Disabled Child

Written by Erma Bombeck

Published in the Today Newspaper Sept. 4th, 1993



Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children.



Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.



"Armstrong, Beth; son; patron saint, Matthew.



"Forrest, Marjorie; daughter; patron saint, Cecelia.



"Rudledge, Carrie; twins; patron saint... give her Gerard. He's used to profanity.



“Finally, he passes a name to an angel and smiles, "Give her a handicapped child."



The angel is curious. "Why this one, God? She's so happy."



"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."



"But has she patience?" asks the angel.



"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence. She'll have to teach the child to live in her world and that's not going to be easy."



"But, Lord, I don't think she even believes in you."



God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness.”



The angel gasps, "Selfishness? Is that a virtue?"



God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see---ignorance, cruelty, prejudice--- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."



"And what about her patron saint?" asks the angel, his pen poised in midair.



God smiles. "A mirror will suffice."

For Autistic Boy, Opera Is Dream Come True - Boston News Story - WCVB Boston

For Autistic Boy, Opera Is Dream Come True - Boston News Story - WCVB Boston

Autism test?

Researchers one step closer to potential autism test

http://pagingdrgupta.blogs.cnn.com/2010/12/02/researchers-one-step-closer-to-potential-autism-test/?hpt=C2

insomnia

Get some sleep: Light – or lack of it – is key
I just read this on CNN "Get some sleep: Light – or lack of it – is key". Jessic's sleep rhythm is way off right now. She wants to take a 3 hour nap in the afternoon, and stay up until 1 or 2 pm. It's killing Juergen and I. We have to get up with the other kids at 6:30am. I am an old women, and 5 1/2 hours just isn't cutting it. I feel like a zombie! So now I need to work on controlling her light!

Transcranial Magnetic Stimulation

repetitive transcranial magnetic stimulation (TMS), creates an electric current that enhances specific cells’ ability to protect the brain from sensory overload in one region of the brain". The researchers believe this eases sensory overload permitting greater focus on learning.

Treatment for Coma Patients,Parkinsons,Alzheimers,MS,Autism - Transcranial Magnetic Stimulation
http://www.youtube.com/watch?v=GkkPnXpNMC8

his brother's keeper

I have people who also ask me what will happen to Jessica when we die or can not care for her any more. I can tell you I just don't know. I know that Nicole has said she will care for Jessica, but who knows if that will be realistic? She will have her own life, her own family. It isn't something I just put off thinking about, but I have no answer. I'm not there and I can not say how things should work out in 20 years. I'm glad we have 4 other children. I hope Jessica will never need to live in an institution. But if that must happen, God will be with her. I will love her and take care of her as long as I am able to. I have not given up hope of a cure. But if Jessica has to live in a care facility, it will not be an easy thing to plan. I'm not there, and I'm not going to stress out worrying about what I can not control. I will simply love my girl where she is at. She is at home. Thank God for now she is home!

growing up with a brother with autism

another sleepless night

Jessica didn't sleep all day after a night with only 3 hours of sleep. Last night I got her to sleep at 11pm, but she woke up at 4am. She was in my room and I locked the door and tried to keep sleeping. I'm a wreak. She kept bringing me cloths. My room is a mess. I kept telling her to lay down and sleep. She was up and down, back and forth. For hours she walked from my bed to the door and back. I pulled the cover over my head...I could not change Jessica but I needed sleep. I have 4 other kids to take care of. Juergen is in India until tomorrow and school doesn't begin until Monday. When I finally got up at 7:30am Jess had pulled her diaper off and pee was on the floor. She had also gotten so upset, her nose bleed. I have to mop the floor, and do laundry because she bleed on my cloths. She took the key out of the door, and we were locked in the room. I could not find the key! Here I was, sleepy me with Jessica covered in blood and urine. What a sight. But I didn't panic. I called down to Nicole. She found an extra key and unlocked the door. I cleaned Jess up. I'm not allowing her to watch any TV until she sleeps. I also have a sun lamp, a full spectrum light I will put in her room. I took her out hours yesterday...but it's so rainy and dark. Her internal clock is obviously messed up. The light will help. The routine of school will also help. She was suppose to go shopping with her dear teacher tomorrow. I'm thinking that's not a good idea. Maybe if she thinks about school, she will grab her shoes and sit on the stairs all weekend. She wants to go back to school, but she can not manage the excitement. She just doesn't seem to understand tomorrow is not 5 mins from now. And the problem seems to be getting worse because she is not sleeping. I could use some prayer. This sort of thing has happened before, but Thank God not in awhile. I remember once I took Nicole to London for a long weekend (4 days). Juergen, Jessica and Philip all had a bad flu. We didn’t have Thomas and Sarah then. Jessica had to throw up. And when she throws up she doesn’t find a bucket…she just does it where ever she is. So poor Juergen had to follow Jess around the house cleaning up after her. We also just got Mickey our crazy dog. And he barks at strangers. Juergen’s good friend Ralf was there. Mickey barked and barked. Jess was throwing up, Juergen felt awful. Nicole and I had an awesome time. I guess if you're thinking Juergen owes me for this week…I owe him too. I’m not crazy or even too upset. I’m tired. I am pretty sure this will pass, but I could use some prayer. Jess just needs to get some sleep! I miss Juergen. I know I need him…but I also just like him allot. We are all so glad he will be home soon.

Jessica is 19 years old today

Jessica is 19 years old today. She was the most beautiful baby. She was smart and perfect. When she was 18 months old she lost her coordination, and her language. It was devastating. We spent years going from one Dr to another. No one could tells what had happened. How could a " normal" child lose her skills? It took 6 years to finally hear the words autism. And all our hopes, and dreams were destroyed. If it's true that God holds our tears in a cup of remembrance, he holds an ocean of tears for me. The loss was awful. Sometimes it still is. Last night Jess was so excited about her birthday, she could not sleep. She stayed awake until 3:30am, and woke again at 6am. I'm finding it hard to function on 3 hours of sleep. But I want to say this...
When Jess lost her voice, and we felt the loss of all "normal" hopes and dreams it was hard. I sat for years in a pile of broken dreams. The edges were sharp, and it cut deep to the heart. But after awhile you stop crying over what you had hoped would be. You start appreciating the pieces of what is there. Jessica's life is like a mosaic. She has soulful eyes, deep compassion, a large ability to understand character, humor, and sweetness. She is a broken person. Autism has broken her. It's robbed her of her voice. We only get to read glimpses of the complex thoughts she thinks. Often we are shut out all together. But she is lovely...all the pieces put together are lovely. In the book of 1 Corinthians 13 (talking about knowing God) it say “12Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.” What I see of my daughter is so beautiful, and I know I will be unable to speak one day because one day I will see her whole. This is my hope. Happy birthday my beautiful girl. I love you so much!

one of my heros

Toy Story 3

It is another wet day so I decided to take the kids to see Toy Story 3 (even Jessica). When we got there Jessica refused to sit down. She sat on the floor near the exit. It was a very good thing we went to the early show. There were not so many people there. She parked herself on the ground and I could not move her. She refused to go in! I was so frustrated! I had put my backpack and car keys in the theater. Sarah, Thomas and Philip were already seated. It got worse. She moved out of the theater and laid down on the floor. Talk about your body language. Jess is almost 19 years old and weighs at least 140 lbs. It is was dead weight. So I talked her into sitting to the side , away from the door. The movie began and I told her I needed my keys if she wanted to go. So she followed me back into the theater. She saw the Toy Story characters, so she stayed. I got her to sit down and watch the entire movie. I should get some sort of prize for that! And I praised Jess for her courage. She sat in a dark, loud movie theater and watched a new film.

It is grace that we live and have health

So very sad

It's so hard to be a parent of an autistic child. There is an 85% divorce rate for parents with autistic kids. It's very hard. So is ADHD. I have Jessica with Autism, and Philip and Thomas with ADHD. I think you have to take it a day at a time, and not lose perspective. I have a strong marriage, and my faith in God. I feel this is so tragic, and such a terrible loss. But the poor mom must have been overwhelmed and had no help. She should have given her kids up to foster care, not killed them.

maybe its not autism?

https://sites.google.com/site/aditishankardass/

Neurofeedback for Autism and Asperger's

We are thinking of buying a neurofeedback machine and learning to use it with Jessica for her autism, and Philip and Thomas for ADHD. We tried it once. It's pretty cool. We can not find someone close to do it. Also our insurance will not cover it. We know an audiologist in Munchen that will work with us. We buy the machine (maybe even used), and sell it used to another family when we are done. For autism it can take years. For ADHD it takes about 6-9 months. Many kids with ADHD go off medication, and stay off it.

ipad

A friend sent me something about the ipad being a great tool for autistic kids. Jessica can write, but she doesn't do it much. The ipad has an application that generates voice. I'm not sure if we can get Jessica to work with it. I also wonder if they have this software in German? We live in Germany and most everyone we know speaks German. Jessica understands English and German. I imagine she could write in English, but German is the language she mostly writes in. The video is of an autistic girl that began to write, and it changed her whole life. We have not been able to get Jess to write at home. She does write with a few teachers, not just one. I'm anxious to try the ipad with her. Perhaps it could help unlock the treasure that is Jessica!

Just keep moving…do not park the car here…just keep moving!

A good friend has a daughter that was an exchange student in America. She just returned 2 days ago. I spoke with her yesterday. She speaks perfect English now. She even got her high school diploma this year. She is so confident and graceful. All grown up. I was so happy to see her. But Jessica who is a year older then Maria was waiting in the car. Jess can not talk, she still wears a diaper, and she can not cross the street safely alone, let alone go to another country for a year. I wasn’t so much jealous as I was hit by another deep feeling of real loss. My baby will never be an exchange student, and it really hurts to realize what I’ve lost…what she has lost to autism. It rained hard this morning. You can not stop the rain, and you can not stop the feelings of grief and loss when they hit you. But after you feel the loss, you have to keep living. I am very quick to start counting my blessings. I have zero power to gain back what has been taken from me. I could roll here in the mud but it will not give Jessica back her voice. I believe in God, and I believe in a heaven where all my tears will be wiped away. I may never know why my baby girl got sick. That doesn’t matter to me anymore. I don’t need to know. I just need to keep moving forward. I can not park my car at this point of grief and loss. Instead I will keep traveling towards my home, a place where she will be whole. I get into so much trouble when I compare my life to others. I need the grace to love who I am and simply love who she is. She is so beautiful.

a look back at her questions in class

March 6, 2008 (Jessica's questions in her Religion class at school)


Question: Do large reactions sometimes have to happen to cause betterment of the world? I mean, if desaster times are necessary to make people believe again?

Question: I want to know why God is sad when people disobey [him].

I like to go into the religion class and am considering to be nice and behave well

Question: Can Mr Kamuf tell me if the righ to be a guest on earth must be earned?

[What do you mean by that?]

I mean if we have to earn the new life by virtuous behavior? I am in anguish because I do not know what worthless life of disabled people is supposed to accomplish. I cannot let up being watchfull.

[What do you mean?]

I mean, why do bad hearts have to wait for heaven time and are not punished on earth? I am very thankful for these conversations and will try to behave.

Mr. Kamuf [the religion teacher] has respectfully given me comfort. I can bear autistic disability better now. We will tell him that he has to come again and talk to us.

waiting for the bus

I was trying to get a good photo of Jessica but she generally does not make that easy. So much of our life together is waiting. I either learn to just love her and love the process or I am sad. I choose to enjoy the wait. In the end that is life...it is the process. Does that make any sense or is it too Zen?

Autistic girl finds her voice through opera

You have granted me many blessings; let me also accept what is hard from your hand.

-Dietrich Bonhoeffer

A Poem Jessica wrote about me Mothers day 2005

All that I like about you: comfort giver, patience, joy-maker, good words, understanding,
contentment with self and us, gifted for friend-love, crazy about flowers, garden fanatic,
colorfull women's meetings, sleeping too long, understanding of sad hearts, deep friendship
for special people, too good for thankless brothers, valueable knowledge of autism, faith in God
and thoughts of peace.

No autism in her eyes

Last night I watched a you tube video about autism awareness. There was a very simple message. A baby was playing (normal baby) and the parents said “we never saw autism in his eyes, we never thought anything could be wrong”. And all of a sudden I was struck by a wave of grief. It knocked me down. I sobbed uncontrollably for 20 mins or more. It was like a post traumatic stress reaction. I thought I was past it. I thought I had cried all my tears. The truth is it was all there…as real as it was when Jessica was 2 and lost her voice. I had done a good job hiding it all away in a room…and locking the door but the door opened up and I was paralyzed by the pain. To be honest, I am going to clean up the mess and lock it all away again. I know its there but I’m powerless to change the past. I can only walk today. My hope is in God who has the power to heal and save. I hope He will heal my beautiful girl (she will turn 19 years old at the end of he summer). Even if He does not heal Jessica I have hope in heaven. There are no tears in heaven and there is no autism. God only gives me the grace to walk today. The past is sad, and paralyzing. I can not bear the weight of it. I do not deny it’s there, but I walk away from it. My hope is found in my God who holds my hand. Nothing can keep me from loving Jessica. She is my joy, and I do not see autism in her eyes…I see perfection!

Softeware for Autism

www.google.com/educators

Nadia Bloom's Rescuer James King Found Autistic Girl in a Swamp

I believe there is a link

Visit msnbc.com for breaking news, world news, and news about the economy

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

this almost happend to us

http://abcnews.go.com/video/playerIndex?id=5234774

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 future...it'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.

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.

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!

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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.

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!

A Is for Autism, F Is for Friend

Autistic Artist

An autistic girl learns to type

http://abcnews.go.com/video/playerIndex?id=8263063

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.

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.

HERE is the link to this work.

Enough

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.

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!

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

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.

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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?

Jessica is not this bad. For one thing she does not scream.

PIR HEG

This is a form of biofeedback that increases the blood flow to the brain. You can read some research on research done on 20 autistic kids. HERE
We will be seeing an audiologist on Dec. 4Th that does this treatment. She will be seeing Philip and Jessica.

amazing

but he uses the portable chamber

WARNING! NOT ALL HYPERBARIC CHAMBERS ARE THE SAME!

HYPERBARIC OXYGEN THERAPY

flu shots

no way would I get flu shots for my kids!!!

Autism's Affect On Siblings

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China with stem cells

Mark came to China in June 2007, at six years old. His family hoped the treatments being tested would give him some relief from his autism. For more information go to www.stemcellschina.com

Has anyone ever tried stem cell treatment?

I'm looking for information about cord blood or adult stem cell treatment for Autism. Does anyone know anything about this? I think it can be done in Germany? I want to consider it for Jessica. It may not cure her (she is 17) but maybe it could help?

father helps save son

17 things about Jessica

1. Her favorite movie is Aladdin. She watched it tonight and you could hear her scream with laughter. She also loves to watch Toy Story 2 in French. I think she loves to hear the name "Woody" with a French accent.
2. Her favorite food would be Chicken McNuggets with out any sauce.
3. She has been to 13 Countries, some of them many times.
4. She has been to Disneyland an absence number of times. Her favorite ride is it’s a Small World, although she also loved Splash Mountain when I took her to Disneyland at the end of July.
5. She loves to take drives in the car, especially at Christmas time.
6. She was baptized in the Jordon River in Israel. This was one of the best days of my life. Nicole was also baptized. The peace of God was all over her.
7. She reads people very well. She can not talk but she can write very colorful discretions of people.
8. She understands at least English and German. Every time she can, she listens to French, and Korean. For some reason, she just loves Korean?

9. I give Jessica the credit for many things, including my heart of compassion.
10. She is not very neat. She prefers her chaos.
11. She can walk a long way. It is hard to get her started, but she can walk for hours.
12. She never had sugar until she was a year old. She does not really like sugar now, but loves fresh fruit and salad. She is actually pretty healthy.
13. She can say fish, kitty, and sheep, and horse. She has never said Papa or Daddy. She has said Mama about 6 times in her life. Mostly she is non verbal.
14. She loves to look at fashion magazines. She also loves to wear new cloths, and feel pretty. She is much more of a girly girl then Nicole or Sarah.
15 She will sometimes give sad people a hug. She will grab the hands of strangers and say, “Oh”. I’ve seen her bring people to tears with her simple heart of love.
16. She loves God. She loves to discuss Theology with her teachers...she writes on the computer.
17. When I say "give me a kiss" she lights up and gives me a big loving smack!

Happy 17Th birthday my beautiful girl!!!

Jessica turns 17

Yesterday morning we were sitting around the breakfast table. Thomas said something, I don't even recall what. I said, "sometimes we just need to understand that our time is not always God's time", "we need to trust God with what we want". As I said these words I began to cry. Thomas was confused. Why was I crying. Nicole and Juergen both understood. It was the final day of Jessica's 16Th year. I had a dream years ago that Jess would be healthy and normal when she was 16. I never knew if I could trust this dream as something from God, or just a mothers "wishful thinking". Well, she turned 17 years old today. She is still autistic. So how do I feel? Sort of disappointed. But I still love God, and I still love Jessica. I guess there are some questions that will remain unanswered until it is God's time. I still pray for that healing to come. I am very grateful today for this beautiful, funny, smart 17 year old that has always been a gift to us. I hope that some day I will see her healed but I love her deeply. She is a treasure partly hidden. I could be really sad about what I don't have or I can be glad about what I do have. What I do have is a sweet and loyal friend. Happy Birthday to my wonderful Jessica!!! I love you more then I could ever express. You are my compassionate teacher. I guard you but you lead me.


This is Jessica from birth until age 14

Report: Fever Improves Autism Symptoms

When Jessica had a very bad case of the chicken pox’s she did show an improvement in her over all ability. Now they say that there is a connection between fever and brain function.

Symptoms of autism 'can be reversed'

Here is some real hope!!!

John McCain on Autism

John McCain is very concerned about the rising incidence of autism among America's children and has continually supported research into its causes and treatment. He has heard countless stories about families' hardships obtaining a diagnosis for their children's autism and accessing quality medical treatment. He believes that federal research efforts should support broad approaches to understanding the factors that may play a role in the incidence of autism, including factors in our environment, for both prevention and treatment purposes.

John McCain was proud to lend his support to the Combating Autism Act of 2006, which he cosponsored, and worked to ensure its enactment. This law is helping to increase public awareness and screening of autism spectrum disorder, promote the use of evidence-based interventions, and create autism Centers of Excellence for Autism Spectrum Disorder Research and Epidemiology. John McCain understands that despite the federal and scientific research efforts to date, the exact causes of autism are not yet known and greater research is needed to understand this disorder. That is why in November 2007, he joined with Senator Lieberman in requesting the leadership of the Senate Health, Education, Labor and Pensions Committee, which has jurisdiction over federal research into autism, to hold a hearing on federal research efforts regarding factors affecting incidence and treatment in order to help determine where research efforts can best be directed. As President, John McCain will work to advance federal research into autism, promote early screening, and identify better treatment options, while providing support for children with autism so that they may reach their full potential.

He has heard my cry

I gave Jessica a shower this morning. This afternoon her hair was all shiny and curly. Where did she get all these curls? Her hair was so straight when she was a child?
What can I say about Jessica now that she is home from America? She is sweet, happy but still autistic. Have I given up hope of her being healed? No, I still have hope. Did I ever write about the time Sarah was begging Juergen to go swimming? Sarah is my 5 year old adopted daughter from China. She really wanted to go swimming. She was a little tired. She needed a nap. So she keeps begging Juergen to take her swimming. He says "maybe later" (he is hoping she will take a nap first). She gets in this broken record mode, she can not stop asking. She is crying, "Please Papa"!!! Crying and begging. Finally Juergen says "OK". But she is stuck, and can not stop begging. I go to her and say "Sarah Papa said yes". "Sarah, go get your suit because he said yes". Even as I say these words I hear the Holy Spirit speak to me. I hear the words, "Amy, I said yes"! I feel like I prayed, I begged. God said yes and I need to figure out how I can "go get my suit", or wait to receive Jessica’s healing. Any way, I feel like I am not supposed to keep begging...he has heard my cry!

early brain over growth

Jessica's brain grew too fast. We did not know she was autistic until she was 8 but we knew something went wrong when she was 2.