Autism.

C was diagnosed with autism

They say most people know a family who has been touched with autism. If you didn’t before, you do now. We are that family.

C was diagnosed with autism spectrum disorder. Under the old DSM IV, he would have been classified under Asperger’s or high functioning. He is severe in areas of rigidity (fixations and needing things to be his way) and social interaction. It was suggested that a center-based intensive therapy might be best for him so that he is around peers instead of one-on-one with an adult. The Early Start Denver Model was suggested as best for him as a developmental approach. Now comes more work on my part to speak with insurance, interview clinics and find the best fit for his needs.

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On the Threshold of Change

Do you ever feel like things are about to change in a big way? Like something big is about to happen and life will never be quite the same again? I felt this way before my wedding day. There was a similar feeling when I went to the hospital in labor with C, and when those two lines appeared and we discovered we would have Baby Jo. Our family is on the threshold of change and it is making me anxious.

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C’s Visit to the Autism Clinic

C playing piano
Last summer, we put C’s name on a waiting list for the Waisman Center for Autism and Developmental Disabilities. This clinic is part of UW Health and we were told it was the best place to go in Wisconsin for a complete, holistic evaluation for an autism diagnosis. C finally had his appointment late last week. I was so anxious about it that I barely slept, and afterward I was so exhausted that with the exception of a hasty Facebook post I hid from the world.

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“It is what it is.”

It is what it is.

Those five words came out of my mouth before I realized how silly they sounded, while also summing up exactly what I was feeling.

“It is what it is.”

I was at the church office to pick up C’s school supplies. Two days earlier, his teacher approached me when I was dropping him off for school. He was making seven or eight trips to the bathroom during his three-hour school day. He is too scared to go to the bathroom alone, so a teacher had to leave the classroom to escort him to the bathroom and wait outside the door until he was done. Sometimes he was in there for 10 minutes at a time.

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The Truth About Tube Feeding

Feeding Tube Awareness Week

It is Feeding Tube Awareness Week 2015 and this year’s theme is, “The Truth About Tube Feeding.” I’d love to tell you about our lives with C’s g-tube. A feeding tube saved my son’s life. In August 2013, he was slipping away from us. He essentially stopped eating in July 2013. By the beginning of August, he had become weak and lethargic. We were told to bring him to Children’s Hospital of Wisconsin, where he was admitted and given an NG tube.

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“That’s too loud for me.”

That's too loud for me.

The thing is, there’s something about my son that I know, but we don’t actually know, but we want to know, yet I’m scared that we will be told, “no,” about. It’s a word that makes me tear up even as I am about to type it here. It’s this thing that I’m grappling with knowing but not actually knowing, and I’ll be sharing my deep emotional struggles with that all week.

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