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

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