Thursday, February 19, 2009

Part 2: Somewhere Over The Rainbow Lies an Autism Diagnosis ( I Don't Think We're In Kansas Anymore!)

This is Part 2...did you read Part 1 first?

JBear was diagnosed with High-Functioning Autism (HFA or Asperger's, depending upon who you ask) at around the same age as JBean. In autism circles, it was considered a late diagnosis. He never received early intervention because he just came across as "quirky" in the beginning. He really wasn't struggling the way you would expect, well at least not until the first grade. Then he started running from the classroom, hiding under desks. He couldn't function in a classroom. But JBean wasn't struggling at all.

I know I sound like I am in denial, but I really am not. There were a few behaviors that I couldn't quite put my finger on...they seemed Yes, she could play for hours alone, making elaborate games and worlds that were hard for her to share with others. Yes, she threw horrible tantrums. But then, maybe it was just normal and I was being paranoid. This was a preventative measure...if she was affected, the concern I felt was for the future, not the present..

The doctor played with JBean, taking notes. Then she had yet another cheery young assistant play with my daughter while she observed from another room. Finally, she was ready to give us the verdict. She sat back in her chair, and pulled her glasses off, setting them on the folder in front of her. She cleared her throat. She had done this a thousand times. This was just one more speech. "Mr. and Mrs. Cruz, she began, your daughter has autism. That's my diagnosis. She will need special ed, Occupational therapy and speech." She waited, eyes fixed on us. It was our move.

I didn't know what to say. It was happening again. The room was spinning, I fought to regain control. I explained to the medical professional that I homeschooled, and we would provide private services for our daughter, if needed. She pursed her lips and looked at me steadily. "Can you provide the support she would get in special education classes? She needs to be around other kids her age. She needs a trained instructor and support staff, or you are going to have trouble on your hands. You are not equipped to deal with this. I have an autistic child, I know what I am talking about."

I tried to keep my voice from quavering. At times like these, I had such a fear of authority. "I believe we can give her what she needs. Her brother was diagnosed three years ago and is doing very well. I held her gaze. "We will always do what is right for our daughter." She pushed her chair back and refused to look at me again. She sighed. "I'll have the desk write up my recommendations, and see you again in six months." She stood to leave, shaking our hand. We had been dismissed.

Hours later, as I sat with the letter in front of me, I thought about what it would mean. Yes, I knew how to deal with this. Yes, I knew interventions: sensory diet, brushing techniques, self-control strategies. But I was already wearied thinking of going back to Square One again. Autism is exhausting. How was I going to handle this? And why did I have to? What did I do wrong that caused my children to have autism? I didn't steal. I didn't sleep around. I was a good person, and I loved God. (Sure, I knew God loved me, but at that moment, I didn't care, I was feeling sorry for myself.)

Three years before, when we sat in the psychologist's office, and, after extensive testing, received a diagnosis of High-Functioning Autism, I was relieved. It was the culmination of a long journey and the label helped me make sense of JBear's behavior. I felt something close to relief. Now it had a name.

I have three children. The youngest is the last. That night, I found out my 5 year old, my baby daughter, the one who was almost 10 weeks premature and with whom I had spent a month camped out next to in the NICU, the one I carried in a sling for months because she could not bear to be away from me, had autism. There it was, in black and white. Autistic Disorder. I felt relief when it was my son. While the rest of my family slept peacefully,I sat up and tried to make sense of yesterday. I did not want the diagnosis to color the way I saw my beautful girl. Though she was the same child as she had been earlier that morning, something had irrevocably changed. That night, the night I was forced to accept what I already knew in my heart? That night... I cried.

T, who wants to hear your experiences

4 sent chocolate:

SunMoonStar said...

I loved this post. I always feel like I shouldn't cry or say out loud how heartbreaking this is sometimes so that my family doesn't feel sorry or sad for me. I have 5 year old twin girls with autism. They are my life along with their brother who is the best therapist they have. He's 6. I too sometimes cry at night, and I too think, why both of them why not just one...

fidget said...

getting my oldest's autism diagnosis was a huge relief, if another one were to be diagnosed, I'm sure my first reaction would be deep earth shaking sadness. None of them have been as she was as a baby so while not wholly unexpected as our risks are higher, the lack of early symptoms I think would make it much harder to accept.

ginabad said...

Oh man. I relate to this post. I am so sorry!

My oldest has Down syndrome. When my 2nd started delays, my heart broke. At first it was just sensory integration disorder, but they said maybe autism. She was 2, and it was questionable. At 3.5, it's pretty clearly austism.

What is Austism Sucks? Just said that myself this week.

Jenn said...

I'm not sure how I stumbled across to your blog, but I'm glad I did! We only have one child on the spectrum (though many say, ADHD is on the spectrum, and my youngest is ADHD) and I shudder to think what my reaction would be if I heard another round of "your son is autistic". Though, it was a big sigh of relief for my older son (diagnosed at age 2.5) and he was able to start interventions pretty early; I still look back and say "why didn't we push for something SOONER?" - it is SO obvious now, that around 15months we started losing our son and by age 2, he had slipped into his own little world.

Anyways .... I just wanted to say I appreciated your post here ... its real and makes me feel like I'm not the only one!


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