Thursday, April 03, 2008

Tomatis for Autism


I just ran across this family support group for families of Autistic kids. It looks really great. If you have an autistic child you may want to check them out. I think I will look into their on line support group.

After the parade has gone by

As I watched all the coverage CNN gave to Autism yesterday, I was amazed. I don't think I've ever seen them cover any subject (apart from the election) quit so well. Really, it was amazing. I'm sure many people, who had no idea about Autism learned allot. That is wonderful. But today I feel like someone left to pick up the paper and spilled popcorn after the parade has past by. I just changed Jessica's stinky diaper. She may be more understood by more people (that is very good) but she is still sick. The world may take notice of our kids one time per year, but we fight this battle every day. I have to be honest, I wish she was not Autistic. I wish I could say I did not understand this need so very well! But I do understand it. I simply need to gather my courage up, and just keep walking. I know (sadly) I am not alone. Million’s of other families all around this world are also scraping the gum off the side walk today. We serve our kids. It was nice the world stopped and took notice. None of us are doing this for the attention any way. It is a labor of love. I truly love my girl!

Wednesday, April 02, 2008

CNN's Autism news

HERE is a link to CNN's autism news. They have about 20 videos and stories from around the world (China, India, the Middle East and the USA). Interesting stuff.

Autism the gift

This is the beautiful words of one mom. Her son had autism. He died from a heart problem. He totally reminds me of Jessica (the diapers, and the loving heart). Jessica also goes up to strangers and hugs them. I've seen sad lonely people in tears because Jessica hugged them.

My child has autism, what do I do?

I posted a note about my autism blog on a few Yahoo groups last night. This morning I had 3 e-mails from families that just found out one of their kids has a form of autism. If I could hug you I would. I know how hard and sad it is. It took us 6 years to find out Jessica had autism. She began speaking when she was 6 months old. She lost her speech and many other skills at 18 months of age. We sought help. Know one gave us a straight answer. We went from specialist to specialist. It took 6 years to finally hear the words autism. They say that it is so important to receive early intervention. We lost many important years. Unless God heals Jessica (and I do believe in healing) Jessica will never recover from Autism. But your child is young. Your child does not need to wait. Start by reading Jaquelyn McCandles: Children with starving brains. Find a DAN Dr. Also, get your child into an early educational program.
People are seeing their children recover from autism. Not every child can or will recover. Girls don't seem to recover as well as boys. Every child benefits from intervention. Autism is a sickness. It has very real symptoms that can be treated. I don't fight autism, but the symptoms of autism. The sleeping problems, the digestive problems. These are the things I can actually do something about. I can not make Jessica better, as in "normal". I can however help her become healthier. When she is healthier, she can manage stuff better.
One final thought. If your child has a form of autism you are going to feel the loss. You lost the “perfect”, “normal” child we all hope to have. The future (both your Childs future and your own…because this will effect you) seems uncertain. Realize you lost that perfect child, but you still have a child. They maybe a stranger but they live. They have worth. They have value. They will march to a totally different drummer, and you will find in yourself strength you never knew you had. Do not lose yourself in the process. Don’t lose your marriage (I write this because 85 % of all couples with an autistic child end up divorced). Treatment for autism can be an emotional roller coaster of hopes and disappointments. Do what you can for your child, but realize even the very best parents have no control over how one child responds to treatment. Some respond, others do not. Let go of your expectations…Just love your child and try to help them get healthier. If you are a person who can learn to value what is in front of you, and not mourn for what you may never have you will inspire the world. You will also be happy. If you fall into the mud, and never get up…you will lose more then your child. You are not alone. Unfortunately millions of families around the world deal with autism. We all feel the loss because our child is sick. Some of us learn to fight, and we also achieve extraordinary things because we learned to rise to this challenge. Learn to love your child right now…where they are and how they are. Work very hard, and do not worry about where you will be in 5 years or even 6 months. Don’t compare your child to anyone else. Learn to love them.

Tuesday, April 01, 2008

Some of Jessica's thoughts

Jan 2000

Dear Oma, I want to express family thanks to you. We were currently very much shocked when we found out that you have to leave us. Daddy makes very sad face and mom started to cry. You are such a good person. And also you comfort everyone else. I am worried about opa because he will then be alone.
I was told in religion class that we live on after we die. I was surprised to notice that I am not afraid of death, because then all will be healthy and meet again. Also I will then be without disability. Let us leave anguish behind and plant hope in our hearts.

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.

Service Dogs May Help Autistic Children

Here is another story about service dogs. I wish they had something like this in Germany. Jessica should have a dog! We have a dog, but he is no help!!!

How is autism diagnosed?

Autism varies widely in its severity and symptoms and may go unrecognized, especially in mildly affected children or when it is masked by more debilitating handicaps. Doctors rely on a core group of behaviors to alert them to the possibility of a diagnosis of autism. These behaviors are:

impaired ability to make friends with peers
impaired ability to initiate or sustain a conversation with others
absence or impairment of imaginative and social play
stereotyped, repetitive, or unusual use of language
restricted patterns of interest that are abnormal in intensity or focus
preoccupation with certain objects or subjects
inflexible adherence to specific routines or rituals

Doctors will often use a questionnaire or other screening instrument to gather information about a child’s development and behavior. Some screening instruments rely solely on parent observations; others rely on a combination of parent and doctor observations. If screening instruments indicate the possibility of autism, doctors will ask for a more comprehensive evaluation.

Autism is a complex disorder. A comprehensive evaluation requires a multidisciplinary team including a psychologist, neurologist, psychiatrist, speech therapist, and other professionals who diagnose children with ASDs. The team members will conduct a thorough neurological assessment and in-depth cognitive and language testing. Because hearing problems can cause behaviors that could be mistaken for autism, children with delayed speech development should also have their hearing tested. After a thorough evaluation, the team usually meets with parents to explain the results of the evaluation and present the diagnosis.

Children with some symptoms of autism, but not enough to be diagnosed with classical autism, are often diagnosed with PDD-NOS. Children with autistic behaviors but well-developed language skills are often diagnosed with Asperger syndrome. Children who develop normally and then suddenly deteriorate between the ages of 3 to 10 years and show marked autistic behaviors may be diagnosed with childhood disintegrative disorder. Girls with autistic symptoms may be suffering from Rett syndrome, a sex-linked genetic disorder characterized by social withdrawal, regressed language skills, and hand wringing.

Autism in South Africa