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Tag Archives: aspergers’s

Prognosis

15 Wednesday Jun 2016

Posted by Ann Kilter in Autism, cancer, faith

≈ 5 Comments

Tags

aspergers's, autism, cancer, myelodysplastic syndrome

We have so many questions that we haven’t asked yet.

I know I shouldn’t go on the internet, but it’s almost irresistible.

Information on prognosis is depressing. The kind of cancer Ralph has is MDS (RAEB-1), with abnormalities in red blood cells, neutrophils, and playelets.The prognosis I have found is two years to live without a stem cell transplant, and four years with it. But I need to ask his treating doctors about that. His case may be different.

When my son Will was diagnosed with autism in 1994, the information was very depressing, even for extremely high functioning children. Yet, now he is a computer programmer for a very large company, has his own house, and flies all over the country.

At our first appointment with the doctor, we just heard what she said, but we didn’t ask enough questions.

Courage is Contagious

31 Monday Mar 2014

Posted by Ann Kilter in Asperger's syndrome, Autism, diagnosis, Disability, high functioning autism, Support

≈ 5 Comments

Tags

ASD, aspergers's, autism, Autistic spectrum disorder, courage, disability

Courage.

Some days, some months, some years, it takes courage to get out of bed and do the job of raising our children with special needs.

The Merriam Webster Dictionary defines courage as “mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty.”

That pretty much sums it up.

Some days it takes courage just to get dressed, get our kids dressed, and get everyone where they need to go. Sometimes it takes courage to face special education committees to advocate for your child. Sometimes takes courage to advocate for our kids to the youth group leader, Sunday school teachers, summer camp leaders, neighbors, family, school, etc. Etc. Etc.

Sometimes it takes courage when a day has been a complete and utter mess, exhausting everyone, to get up the next day and start again.

But, when you live your life with courage, others are encouraged.

When my children were young, sometimes tears would slip down my cheeks when discussing my children’s difficulties. I am sometimes an overly emotional person. I can’t always keep smiling in the face of difficulties. Actually, I can rarely keep smiling in the face of difficulties. That’s not me. During these meetings sometimes my kids’ teacher consultant or social worker would tell me that they would bring me up as an example to other parents. I didn’t really believe them. I thought they were just saying that because of their discomfort with my emotions.

I was reminded of those meetings when I visited with my parents at my brother’s house this weekend. My sister also showed up from the other side of the state. She is a nurse, with wildly varying hours, so it is not easy to see her, or even talk to her on the phone these days. (She ended up having to leave early because she is on call for two weeks). While we were talking about her youngest son, she mentioned that she knew how to advocate for him because of our many conversations when my kids were young and watching how I handled my kids. She told me that he has some autistic features. “He has autism?” I said. She nodded. Thinking back on it, I can see it in him. He is in his third year of college planning to go into computer programming. He is on the high end of the spectrum, so they didn’t realize what they were dealing with until much later in his education.

My courage encouraged her. Your courage will encourage others…even if you can’t see how.

courage-to-continue-mcounts

 

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