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That Damn Diagnosis

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Kristina Lakes

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“James has autism,” I typed the next day. I was sending an email to our family and friends. I couldn’t imagine talking to them all, saying the words again and again on the phone. I knew some people would be mad that I was putting such big news in an email, but I also knew that some people would be relieved that I wasn’t telling them face-to-face. 

 “The psychiatrist at Dayton Children’s diagnosed him, and we will, of course, seek a second opinion, but it looks like the diagnosis is correct. He also has Attention Deficit Disorder and Oppositional Behavior Defiance Disorder. But the main diagnosis is autism. I know that one day we will be the “Poster Parents” for Autism, and we will raise money and awareness and do walks …. but right now we are devastated,” I wrote. Then I hit send. 

I walked out into the living room.

“Well, I did it,” I said to Sean.

“Did what?”

“I told everyone. I sent a mass email. Your family and mine.”

“Okay,” Sean answered. “What did you say?”

I told him, and Sean winced.

“What?” I asked. “You don’t think I should have told them all of that?”

“I don’t think you should have said we’ll be poster parents,” he said, with a laugh. “Now we have to live up to it.”


 

The next day, when Sean came home from work, he came and sat by me.

I looked up from my computer.

“Did we get a lot of  emails back?” he asked, glancing at the screen.

“Yeah, everyone’s been really nice. Lots of “I’m so sorry,” or “We’re thinking about you.”  I stood up and pushed the chair in with a bang.

“So what’s wrong?” Sean asked.

“I don’t know.  None of them have said what I really wanted to hear, I guess.”

“Which is?”

“That it isn’t true.“

“Kristina.” Sean put his arm around me.

“No, it’s fine. I’m alright.”

Sean sighed. “You wrote my sisters?”

“Yeah. They said they’re surprised.  Becca said, ‘But he’s so smart!’ and added about 50 exclamation points.”

“Ha!” Sean said. “Sounds like her.”

  A lot of people gave us suggestions of doctors to contact -- and diets to try. Good Lord, you should read all the advice about diets. ‘No dairy! No red dye’”

“Well, what did you say back?” Sean asked.

“Mostly, I just wrote what I thought that they wanted to hear.”

“Like what?”

“Oh, we’ve never thought about that! We’ll try that! Yes, yes, it’s good to finally have a diagnosis. Yes, I remember our second cousin’s step son who has it and yes, I know he did just fine in life.” I got up. 

“Jack? He’s weird.” Sean said.

“I know.” I answered. I turned out the light to the study.

“I also told everyone we are okay,” I said.

“Are we?” Sean asked, as he walked down the hall.

“No,” I answered.

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Helen Black

Basic Member

Posted

Yeah I totally know how you feel,

“I also told everyone we are okay,” I said.

“Are we?” Sean asked

“No,” I answered.

We parents just have to take it each day at a time, it is really, really tough to go through the diagnosis process, children are a lot of work, a child with autism is x100. Our son is 12, diagnosed at 7...5 years of knowing which has helped US to adapt and be kinder.  Before diagnosis I was tearing my hair out try to figure it all out. It will be OK, you are OK, your son is OK...you are all doing your best, just keep reminding yourself of that.

Best wishes

Helen

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JoanMarie

Basic Member

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Our son was not diagnosed until 3 years ago at 28 years old. What a relief to know there was a name for what he has and that there is nothing wrong with him so to speak. He, and we, suffered through so many psychiatric hospitalizations and every diagnosis you can think of. Add to that, all the money we spent on rehabs because he self medicated himself to feel tolerable to himself. It’s hard to hear but better to know.

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Kristina Lakes

Basic Member

Posted

Thank you for reading my article.I can't even imagine not knowing for so long. Best wishes to you and your son.

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Patricia Knobel

Basic Member

Posted

Thank you for posting your feelings in such a beautifully written article.  My son had a similar diagnosis at age 10 about two years ago. I felt very much the way you feel.  I commend you for telling everyone in your family. For a long time, I avoided telling people about the autism part.  To this day I use the term Aspergers or high functioning autism.  I agree with what Helen wrote, your son will be OK and you will be OK.  It takes time to adjust to the new reality, which is not what any of us signed up for, or expected as parents.  The more I read, research, and find good resources like Asperger Experts, the more hopeful I feel.  Our kids are different which makes life harder, but they have many amazing strengths because they are different and think differently.  With the right resources and support, I believe my son will become an amazing adult.  Think how rough Albert Einstein and Steve Jobs parents had it. LOL.  Best too you and your son.

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Patricia Knobel

Basic Member

Posted

Thank you for posting your feelings in such a beautifully written article.  My son had a similar diagnosis at age 10 about two years ago. I felt very much the way you feel.  I commend you for telling everyone in your family. For a long time, I avoided telling people about the autism part.  To this day I use the term Aspergers or high functioning autism.  I agree with what Helen wrote, your son will be OK and you will be OK.  It takes time to adjust to the new reality, which is not what any of us signed up for, or expected as parents.  The more I read, research, and find good resources like Asperger Experts, the more hopeful I feel.  Our kids are different which makes life harder, but they have many amazing strengths because they are different and think differently.  With the right resources and support, I believe my son will become an amazing adult.  Think how rough Albert Einstein and Steve Jobs parents had it. LOL.  Best too you and your son.

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Lindala

Basic Member

Posted

Thank you for sharing.  There is the realization relief and also the lost hopes and dreams.  We love our kids and want what is best for them.  We want them to be able to thrive in a world that is not very accommodating or understanding.

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