It’s been two days since we received the diagnosis. Two days since a hurricane roared into our life and blew away the dreams we had for our son.
My emotions are vascillating between despair and determination. Resignation then resolve.
Three more days until we can meet with the pediatrician. Until then, research. I have to research. I need to know everything about autism. Everything about treatments. Is it even called treatment? Or maybe therapy? I don’t know. I don’t even know anyone else who has autism. I need to know everything.
I call my best friend. I need to cry – again. She’s always there for me. She’s strong. I need her to be strong for me today. I’m weak.
“I have a friend out here in California who has a young son with autism too,” she says. “She’s awesome. I’ll call her right now and get you two connected. Maybe she can help you figure out next steps.” A lifeline! I grab hold of it tightly. “Thank you SO much,” I breathe, as tears stream down my face. “I feel like you just tossed me a life vest.”
Twenty minutes later her friend calls me. From the moment she says, “Hello, this is C,” I lose it. “I’m so sorry to hear the news. How are you holding up?” she asks. I can't speak for a few minutes. I just cry. “It’s okay, let it out. I get it. It’s okay. I’ve been there. Take your time.”
It all comes gushing out. The whole story.
He was totally normal until about 18 months old, I begin. He smiled, he laughed, he looked at me, he ate lots of foods, he said “mama.” Sure there were some little delays. It took him a little longer to crawl, to sit, to walk. But he’s a boy. Boys are always slower at those things, right?
Then something changed. Eye contact began to wane. He wasn’t getting any new words. He looked dazed half the time, staring off into his own world. What is he staring at? Why won’t he eat?
“Every child develops differently, and at their own pace,” his pediatrician at the time had said. “We’ll keep an eye on his developmental milestones over the next year, but there’s nothing to worry about right now. He’s healthy. He’s doing well.”
I continue as C listens.
A year later we moved to a different state. We enrolled E in his first preschool, and that’s when it started.
In his second week at preschool, a call from the teacher. “Could you come in and meet with me tomorrow? I’d like to talk about E’s progress thus far.”
Progress? He’s only been there a week! I didn’t know preschool would do progress reports this early! I responded, “Absolutely. See you tomorrow.”
Ms. D, the preschool teacher, welcomed me warmly into the empty classroom and offered me a pint-sized chair. I sat down. My knees were up to my chest. I felt like a giant. Why is my heart pounding?
She began, “E is the sweetest boy. I’ve fallen in love with him already!” I smiled tentatively. I felt like a “but” was coming.
“But …” There it is.
“… I have been noticing that he doesn’t interact with the other children at all. He won’t sit in circle time. He’s not following directions from any of the teachers. He seems almost oblivious to our directions, in fact.”
“Well, he’s been home with me or a babysitter since birth,” I explained. “This is his first experience with spending any length of time with other children on a regular basis, so perhaps he just hasn’t adjusted to it yet?”
“Perhaps,” she said. “But….” There’s that ‘but’ again.
“…I wanted to suggest that you think about getting him evaluated. It may be nothing, but (again with the ‘but’?!) if he has any sort of issue or delay going on, the best thing would be to get that figured out now so we can help him in any way he needs.”
My frustration is evident to C, listening intently on the other end of the phone line as I plunge on with the story.
"An ‘issue’? What type of issue?” I asked. Ms. D demurred. “It’s not for me to say, I’m not a doctor. We do have a behavior analyst who works with us, and I could ask her to come by one day this week just to observe him and share her thoughts if you’d like?”
“Yes, that would be great. Thank you.” We agreed that the analyst would observe him later in the week and then the three of us would talk. I drove home with a pit in my stomach.
Suddenly I realize that I’ve been talking for quite a while. “I’m so sorry!” I say to C. “I didn’t mean to go on and on like that. Let me jump ahead a bit.”
“It’s TOTALLY okay,” C reassures. “I’m hearing a lot of similarities to our situation from what you’ve been describing. Go on.”
I take a deep breath and continue.
The analyst at the preschool said that she thought E might have a hearing problem because he wouldn’t respond to his name being called, and when she clanged some toy cymbals behind his head he didn’t flinch or turn to look. So, we took him to a specialist for a hearing screening, and his hearing is fine.
The specialist referred us back to our pediatrician and suggested we ask for a referral to an occupational therapist for evaluation. We did that. E went through a 3-day process for the OT evaluation. That resulted in a recommendation from the OT to have E evaluated at The Child Study Center here in north Texas.
Well THAT process included a 7-month waiting list, multiple days of evaluation for E, and hundreds and hundreds of dollars. And we didn’t even know what they were testing and evaluating him FOR.
Then they gave us the ASD diagnosis. That’s it. She gave us the diagnosis, handed us a folder, and sent us on our way.
I begin to cry again.
“How are we supposed to know what to do next?!” I wail to C. “If they’d given him a diagnosis of some sort of disease or something, there would be a treatment plan. A path forward. Next steps. SOMETHING. But we got nothing! Just a folder!” I feel the anger rising up. I cry harder.
“I’ve spent two days researching everything I can find. I don’t know what half of it even means. I’ve barely slept. I can’t eat. I’m so overwhelmed.”
C jumps in: “I KNOW. It’s awful. We went through the same thing, and still are. You have to figure it out as you go. But I will share everything I've learned so far, and I promise you, you WILL find your new normal. It WILL get better. Not easier, but better. I promise. I’ll do all I can to help you.”
A lifeline. Thank you God for this lifeline!
“Thank you so much, C” I say, emotionally spent. “You are a gift from God to me today. I will never be able to thank you enough. I promise one day I will pay this forward. I PROMISE.”
“I know you will,” she says. “I know you will.”