Friday, October 16, 2015

Good News—It's not Autism

I spent over a year fighting the voices in my head that told me my daughter, Julianna, had autism. I was okay with other diagnoses, like developmental delays, speech delays, even sensory processing disorder. The school district, who had been doing the bulk of the evaluations, went along with me, because I think they sensed my trepidation concerning the word autism. Back then, it felt so final, so limiting. So I felt better believing that she could have other things, but not autism.

When she approached her 5th birthday, I became very concerned. Her behaviors were getting out of control. I was losing my ability to care for her properly. Our family seemed like it was hanging by a thread. And the local regional center denied services because she didn't have an official diagnosis of autism on her records, only "autistic tendencies." So when she started her second year of preschool, I told the psychologist to give it to me straight. If he thought she had autism, I was ready to hear it. And more than that, I desperately needed more help for her.

I remember sitting at the table in the conference room of the preschool, surrounded by her wonderful teachers, the school director, the therapists, and the psychologist. I already knew why we were meeting: we were finally going to put that word "autism" on her IEP, on her official reports. It would be her primary diagnosis. But I didn't realize how much it would hurt me, even being ready for it. The psychologist began reading his report, and when he mentioned autism as her new diagnosis, it stung me. Even knowing it was coming, it hurt me. It felt like I had just been pushed hard, in the chest, like the breath had been knocked out of me. I fought to hold back the tears, but it was pointless. I sat there, the parent, the representative of Julianna at this meeting, and just cried.

I've cried at so many IEP meetings, and I've always wondered how it makes the others at the table feel. Are they uncomfortable? Is it awkward? Do they really understand why this is so hard to hear? To sit around a table and hear all these things said about your child—global delays, 1st percentile, mild mental retardation, gross motor delay, fine motor delay, speech delay, the list goes on. And now autism. But that word was key to getting her the help she needed, and the peace our family was seeking.

I've come a long way since then. That was 7 years ago, and just this week, I began the same process with my youngest child, Nathan, who is almost 3. He was born with a cleft palate, and a duplication of chromosome 22, which puts him at risk for all kinds of delays and disorders. He's been watched closely by a team of specialists since his birth. He's had the surgery to repair the palate. He's doing speech therapy and progressing well. But because of our family history, I had to know—was autism going to be added to his list? I didn't really think it was possible for him, but considering what I'd gone through with my oldest, I didn't want to enter any type of denial phase. I wanted to face it, right away.

He was evaluated by our regional center, the same one that denied services for Julianna year after year. I sat in the waiting room with other parents seeking answers while Nathan played with the Tonka trucks. A psychologist walked into the room with a clipboard and began studying one of the children, taking notes. I stared at that man with the clipboard and realized he was the one who evaluated Julianna over 6 years ago when I was desperate for help and answers. He was the one who told me she just had PDD-NOS, and that I should be very lucky, because she would have a bright future. He's the one that caused me to drive home on a cloud, feeling happier than ever, feeling like Julianna was better than those kids that needed more services. He's the one who wrote a report that the school district would later call "science fiction," and would lead to me fighting the regional center with everything that I had, and winning. Seeing his face again brought back chills, and I was so glad he was not the one evaluating Nathan.

A nice woman called his name from the doorway, and we walked back to her office. After a series of questions and tests, she said Nathan was just fine. He did NOT have autism. I was expecting this, and didn't feel relieved. All I could think about was my daughter, Julianna, who still had autism.

When I got home, I posted the news about Nathan on my Facebook page, and naturally, many people liked the post, and commented things like, "What good news!" And they're right, it is good news. Good news for Nathan. Good news for our family.

 
But I couldn't stop thinking about Julianna. She still has autism. She's still dealing with anxiety, motor and vocal tics that she can't control, sensory issues related to food and clothing and smells and sounds, problems communicating and making eye contact, a strict schedule of therapy, a fear of swimming and water. And that's okay. She's still good news to our family. And if you asked her, she'd say there was nothing wrong with her. Sometimes I ask her, "Do you like being Julianna?" She always answers with a little laugh, "Yes, I like being Julianna."

Yes, I am happy Nathan doesn't have autism. But even if he had been given the diagnosis, I would have felt the sting, the loss of breath, just like I did 7 years ago. Hearing the word is hard—but the healing does come, slowly. I still ache for Julianna, and know that despite her challenges, she is also good news in our family. She is teaching us, and others all around her, about kindness, tolerance, acceptance, and love. And we are blessed. I don't fear autism anymore. I am embracing it. It's not final or limiting anymore. It makes her who she is, and our family is better because of it.

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