Just autism

This is a very sad post, but i feel to share it with you. I went to a parents-meeting from Nicky's classroom yesterday evening. It was a nice evening talking to this parents and learning about their kids and the problems they face everyday. I found out, there are two kids in the classroom with a disorder called Neuronal Ceroid Lipofuscinoses (NCL).
Late Infantile NCL begins between ages 2 and 4. The typical early signs are loss of muscle coordination and seizures along with progressive mental deterioration, though afflicted children may show mild-severe delays in speech development well before other symptoms appear. This form progresses rapidly and ends in death between ages 8 and 12....
On my way home i just thought, what they must go trough every day, just seeing the child slip away more and more.
You ask yourself why? ...and then you go home, hug your (just) autistic boy in his sweet dreams and cry.....

Turning things around

The last weeks we made some changes around Nickys diet. It took me a long time to finally go for it. The first thing we did is changing back to "only" GF/CF and leaving SCD behind us. the last results on Nickys tests came back with very high levels of Yeast in his gut. After all this work over the last 10 months we couldn't get rid of the yucky yeast. And after the decisions for me to go back to work we needed a plan where everyone can cook for the kids. With SCD its a little tricky.
The other thing was a medication called Nystatin. Its good for all kinds of yeast infections through your whole body, from mouth to the "rear end" :O).
The first days on Nystatin where tough, lots of die-off-reaction, with tantrums and sleepless nights. It was tough on us, exhausting and you feel you have to give up on all the intervention you do with him. But then comes the light on the end of the tunnel and you see your child crawl through it. It happened last weekend, we went to see Wolfgangs family. Nicky was in good spirits, he walked miles through the autumn-forest, without being pushed or pulled. He smiled at Onkel Walter and he sniffed on everybody (his new thing for saying "I like you!).

We also started with auto-immunizations. Its a serum, a lab makes out of nickys yeast-overgrow. He takes it and his own body builds up antibodys. He also has reactions on that, but seems to be in a better mood already.
There are plenty things you have to try if you go on the biomedical train. some work on your child, some don't. I am sure we will find the right path soon.
We will start with Tomatis Therapy next year and antiviral-therapy. There is a believe that kids on the spectrum are born with viral infections or they got it early in life. I believe Nicky is one of them, just thinking of the Hip-infections he already had in his life (4). Anybody here with a typical child who had that???? Get the idea?
Well, i keep you posted, stick with us and your good spirits will always support us.
Lots of love
k.

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 guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. 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, 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."
The pain of that will never, ever, go away, because the loss of that dream is a 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.

Quote of the day

"Genetics loads the gun, environment pulls the drigger!"

Out of Jenny McCarthys new book "Mother-Warriors" on the cause of autism

Just saying HI and we are still alive ;)

Hi everybody! We are still alive. Life just cought up with us and we trying to catch a breath here and there. A lot has happend in the last three weeks and i want to put it together here. First of all a few pictures from Mr. "Noodle" Nicky beeing the partyboy of the day while his school celebratet its 40th birthday. Nicky had so much fun dancing with his much bigger friend Lars.

On a different note: I applied for a fulltime-job at a big hightech company, just 20 minutes from here. And i got the job, i am so excited! Its in their export departement, where i am responsible for China, Middle East and India. I fitted the profile exactly, especially my english was in my favour :o). If you want to check them out: http://www.rittal.com/.

I am starting november 1st and till then i have to do tons of work to get this family ready for this step. We are in the search of a nanny right now, but probably have to cover for a few weeks with babysitter and family. Keep your fingers crossed that we find soon somebody who fits to our family. If you know somebody, let me know.

We are going on vacation next saturday. We will go to the Northsea and the Frisian Islands, just five hours north from here. Its going to be cold and unfriendly, but we will be there in our winter gear and enjoying the fresh air. We will make long bike rides, going on a carriage ride along the shore, where usally is water, they call it the "watt". We also plan to visit one of the islands and some more things. We will stay at an old Windmill with vacation homes.

We are all looking forward to this break after a hektik year. I will post pictures when we'll be back.

Love - The Gebhardts