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Category Archives: Not autism

Blessings

14 Saturday Mar 2015

Posted by Ann Kilter in Achievement, faith, Not autism

≈ 9 Comments

Tags

achievement, asperger's, autism, blessings, history

What a year this has been.

Patty has been admitted to university to study for her masters degree in history. Yesterday, they offered her a tuition waiver and teacher assistant position with a stipend.

Mary started her job in February.

Will bought his house and moved in February.

In the midst of Ralph’s health issues, wonderful things are happening in our children’s lives.

I am unsettled about Patty moving 400 miles from home (by car), but the Lord says to my spirit, “Trust me. Trust me.” Patty has said that she feels it is her calling to teach history at the college level. I have to let her spread her wings.

Comorbidity – Rodgers

26 Monday May 2014

Posted by Ann Kilter in Achievement, Asperger's syndrome, Autism, diagnosis, Disability, Not autism

≈ 7 Comments

Tags

asperger's syndrome, Elliot Rodgers, Lanza, mental illness

I was alarmed when I heard that Elliot Rodgers had been diagnosed with Asperger’s Syndrome. That was one of the first things I heard about Adam Lanza after he killed 26 at an elementary school in Connecticut.

The media gloms onto a diagnosis in an effort to make sense of the unexplainable, the incomprehensible. Unfortunately, it has the effect of casting others with the diagnosis in a very negative light. When unenlightened people hear a child has Asperger’s syndrome, or a future school, or employer, the word may cast aspersions on those who have the diagnosis. Accommodations? Why might you be needing accommodations?

When I saw the videos of Rodgers, I said to my kids, “He can’t have Asperger’s syndrome. He doesn’t strike me as a person with Autism.” He does strike me as a person who is very seriously mentally disturbed.

I could be wrong, this could just be Asperger’s in its worst form, but I don’t think so. If he did have Asperger’s syndrome, it almost certain that it is comorbid with other conditions. When my daughter was placed in an autism classroom, I became aware that having autism does not insulate you from other insults to the brain and body. Mary had classmates who were also blind, also epileptic, and/or mentally impaired. Mary has very mild cerebral palsy and severe learning disabilities, along with autism. When two or more conditions are present, they are said to be comorbid. My daughter had autism and the comorbid conditions of learning disabilities and cerebral palsy.

Adam Lanza’s father said that he doesn’t believe that Asperger’s Syndrome was the cause, that other mental problems were the issue. (http://time.com/19957/adam-lanzas-violence-wasnt-typical-of-aspergers/).

Elliott Rodgers may have Asperger’s Syndrome, but in my opinion it is very clearly comorbid with severe mental illness. We may find out that he was misdiagnosed, as some claim about Adam Lanza.

 

 

 

 

Autism 45 – Insight Into 50 Years of Autism

27 Saturday Jul 2013

Posted by Ann Kilter in Asperger's syndrome, Autism, diagnosis, Disability, Miracles, Not autism, Transition issues

≈ 2 Comments

I am recommending this blog because this blogger, Carole Norman Scott, has traveled the road long before most of us. Before there were autistic classrooms.

http://autism45.wordpress.com/

She has struggled just like we have. And found hope and victory just as we are doing. She is the kind of role model I had when my kids were growing up. I didn’t know her, but there were others.

Throwing Off the Label

17 Friday May 2013

Posted by Ann Kilter in Achievement, Asperger's syndrome, Autism, high functioning autism, Not autism

≈ 20 Comments

Tags

angst, asperger's, autism, label, \

Since birth, Patty has been a fighter.

The morning before Patty was born I woke up dreaming that she had died. I was frightened, but I made an effort to put it out of my mind. Subconsciously, I must have known something was wrong. That afternoon she was found to be breach.  After I delivered her naturally, the neonatal team unwrapped the cord from around her neck and ran her down the hall to the neonatal intensive care unit. She had sucked in amniotic fluid and stopped breathing.

One of the nurses came back to the delivery suite and told us that she was a very, very sick baby, but she was also a fighter and that was a very good sign. She had torn out all the tubes they had put in, and they had to restrain her arms and legs. When they rolled my wheelchair into the NICU, her little hands and feet were tied to the sides of the bed. Traumatizing though it was, Patty was well enough to go home in three days with a monitor.

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From the time we brought Patty home, she clung to me. I jokingly called her my little barnacle. Patty always knew when she was going to be dropped off at the church nursery or with a babysitter. Will and Mary would go to the church nursery with hardly a peep of protest. 10 feet from the nursery door, Patty would start screaming. She fought to stay with us.

When Patty was 18 months old, the special education specialists encouraged me to have her tested to see if she could benefit from special education services. Her older siblings, Mary and Will, had been placed in special education classrooms in the preceding six months. Patty met the criteria for special education due to speech impairment and slower than normal development. They wanted to place her in a classroom out of district, but I said that I could not manage the task of taking her to another place and also be available to take Mary and Will to their special ed classrooms in the district. So at 20 months, a speech therapist came to our house to provide early intervention for Patty.

Will was diagnosed with autism when he was seven years old, and Mary was diagnosed with PDD.NOS when she was nine.

Patty was diagnosed with “atypical” autism because she didn’t fit all the criteria for autism. The psychiatrist noted that she was very bubbly and friendly, but he gave her a diagnosis, in part because her sister and brother were on the spectrum.

In her later elementary years, she began to fight against the diagnosis. And I have hoped that she is right. She was in a learning disability classroom because she had a difficult time learning to read. She received speech therapy from an early age because her speech was very difficult to understand. And she benefited from programs that were available to children with autism and other disabilities. Because of her diagnosis, she was able to develop a relationship with Fred, an Arabian horse at the therapeutic riding program. And without the diagnosis, she would not have been able to have one-on-one swimming lessons.

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However, after she learned to read, she began to resent being pulled out of the classroom to meet with the speech therapist and social worker. She said they were treating her like she was stupid. She was not autistic like her brother and sister, she said angrily. I had to agree that there was something else going on. She was able to lie from an early age. Will and Mary never told me a lie until well into their teens. Even then, the effectiveness of their lies were laughable. Patty learned to tie her shoes, bounce a basketball, and write at a much earlier age than Will and Mary. She enjoyed reading the comics.

When Patty entered middle school, she noticed the clothes that other students were wearing, and wanted to have the same clothes. Will and Mary did not really notice or care what their peers were wearing. Patty wanted to fit in and was aware of peer pressure. She fought against being pulled out of middle school classes because she said, I’m not disabled. I’m smart. And she was, but she fought against the services in a very unpleasant way. Because of that, she was not allowed in gifted programs. Her brother, Will, was identified as gifted in fifth grade. But Patty had to fight to get into those programs, despite the highest test scores in her all of her classes for several years running.

In high school, Patty made the sessions with her speech therapist so  miserable, that we opted to end speech therapy. She was still the on the social worker’s caseload, but she would walk right past the office without responding to the social worker’s greeting. Patty wanted to be free of the label of autism. She said that she only had the diagnosis of autism because she had grown up with an autistic brother and sister. It was environmental, she said.

When Mary and Will went to college, they both made use of Disability Services. Mary graduated in five years and Will graduated Magna Cum Laude in four years. Patty has refused any help in college, and is on the Dean’s list every semester. With no help.

Patty has a love-hate relationship with autism. On the one hand, she doesn’t want to be identified as a person with autism. On the other hand, she loves her autistic siblings and staunchly defends them, and anyone else who she senses has autism. She was so worried about Will when he moved away that she had headaches for weeks last summer.

Not Like Mom

08 Wednesday May 2013

Posted by Ann Kilter in Achievement, Asperger's syndrome, Autism, Disability, high functioning autism, Independence, Not autism, Support

≈ 25 Comments

Tags

asperger's, autism, grandchildren

Last night Patty was very upset because she found out she needed at least two years of a foreign language in order to be accepted into a history graduate program. She just finished up her junior year last week, and she will not have the language requirement completed if she graduates next year. She has one year of Arabic, but she needs an Indo-European language in order to do graduate work in American History.

So she was in despair last night. My suggestions were met with resistance. I said she could take German courses next year, and finish up after she graduates at the community college. She said she needs to finish the requirement before she graduates, which would be very expensive because her scholarship is good for only four years.

Ralph suggested that she work for a year while completing the language requirement at the local community college. Then she could also save some money for grad school.

She countered, “I don’t want to go to work full time. I want to go straight to grad school. If I get a job, I’ll probably meet some guy and get married, and I don’t want to have kids. I don’t want to spend my life raising autistic children like you did, Mom. If I have kids, I won’t be able go on to school. I feel that God is calling me to teach history at the college level. And if I don’t go, I’ll miss my calling. I don’t want to get married just because everyone my age is getting married. I have other goals.”

“I don’t want to be like you, Mom. Will can get married and have grand kids for you.”

Blinking back tears, I said, “It’s not important for me to have grandchildren. I know you want to go to grad school. I have never pushed you about getting married and having children. You put that on yourself.”

Ralph added, “Not everything goes as we plan. My life didn’t turn out the way that I wanted. But I met your Mom and that is the most important thing to me. I wouldn’t trade that for anything in the world. Maybe you will get married. Don’t close that door. You should continue along the path you are going. This is just a bump in the road. Keep on trying.”

Patty has told me many times that she doesn’t want to spend her life the way that I did – raising autistic children. She is afraid that if she has children, they will have autism. That is a reasonable fear because her brother and sister have a genetic form of autism. (She also has a few autistic traits, but we don’t know if the traits are genetic or environmental.)

I have very mixed feelings regarding the subject of grandchildren. It is very likely that there will be no natural grandchildren in our lives. The realization of this loss struck me about eight years ago when my friends would show me pictures of their grandchildren. Then my younger sister began having grandchildren. She has eight now. On the other hand, what if one of my kids does get married and have children, and what if one of their children also has autism?

I would love that grandchild with all my heart. That is what would happen.

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