Thursday, December 30, 2010

iHelp for Autism

A reader sent me this

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

Thursday, December 09, 2010

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."

Saturday, December 04, 2010

Autism test?

Tuesday, November 16, 2010


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!

Sunday, November 07, 2010

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

Tuesday, September 21, 2010

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

Monday, September 13, 2010

Thursday, September 09, 2010

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.

Wednesday, September 08, 2010

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!

Saturday, September 04, 2010

Tuesday, August 03, 2010

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.

Thursday, July 22, 2010

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.

Friday, July 09, 2010

Monday, June 21, 2010

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.

Saturday, June 19, 2010


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!

Friday, June 11, 2010

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.

Wednesday, May 19, 2010

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 is the process. Does that make any sense or is it too Zen?

Monday, May 03, 2010

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

-Dietrich Bonhoeffer

Monday, April 26, 2010

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!

Tuesday, February 02, 2010

Monday, February 01, 2010

Friday, January 29, 2010