Courage is Contagious

31 Monday Mar 2014

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

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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.

Autistic Spectrum Disorder

01 Monday Apr 2013

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

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asperger's, autism, Autistic spectrum disorder, controversy, diagnosis

Very soon now, most of the autistic diagnoses will be gathered under one umbrella: Autistic Spectrum Disorder. I don’t know if that will make it easier to get services or more difficult. I do think that condition of our schools and budget changes will make it much more difficult for parents of modest means to get services for their children. But at least it may make it easier for all to spend less time defining their diagnosis as one or the other.

When Will was diagnosed with extremely high functioning autism at the age of seven, I did not want to accept it. That was 18 years ago. I said to the child psychiatrist, “Maybe he has Asperger’s syndrome.” He said to me that this was not something that I should want for him. He had trained with Dr. Luke Tsai at the University of Michigan in the Asperger’s clinic, and he said he knew the difference between the two. My older daughter was diagnosed with PDD.NOS, which I did not realize was on the spectrum. I kept wondering why they treated her as autistic, but I did know that she was more disabled that my son.

I have not been very involved with autistic support groups or activists, in part because I didn’t feel accepted. There was a lot of pressure to purchase the latest therapies (some of which have now been proven useless), and I could barely afford any of it for one child…which child should I choose? A difficult moral question. So we went our own way. I went to conferences and workshops, and I learned a lot and applied it. Sometimes therapists would suggest to me that Mary had Asperger’s because of certain characteristics of same. But I would come back with, “She was below the 1st percentile for speech development through middle school.” I think there was some fluidity in these diagnoses and much controversy. Now the diagnoses will diagnostically disappear.

I have also not been involved because I have been busy since 2005 taking my children back and forth to local colleges. Will did not learn to drive until he was 22. Mary may never learn to drive due to some comorbid conditions due to lack of oxygen at birth. At any rate, the local rehabilitation driver’s program says she cannot drive. So I have not been involved in the autism community for several years due in part to time constraints. Now that Will and Mary have graduated from 4-year colleges, I may get involved again with groups for adults in the area for Mary’s sake. I have more time to drive her there.

When my kids were in elementary school, it was easier for us to access services due to the fact that they received what was perceived as a more severe diagnosis. Parents of children with Asperger’s were still in a battle with the system to get any kind of services or accommodations for their kids, even though many of their needs were the same and sometimes worse than what we were dealing with.

Perhaps this change in diagnosis will make it easier for students with the Asperger’s diagnosis.