I almost canceled the appointment.
I just couldn’t fathom that there was something “wrong.” Yes, I had some concerns, but I kept believing that Hamhock was fine, that he would catch up, that he was just developing on his own timetable.
That said, I knew in my heart that I would leave that appointment with an autism diagnosis. I just knew.
After he was evaluated by the Early Intervention team (April 2006), he was started receiving 1-2 hours per week of ST and OT. Even before the diagnosis (June 2006), I knew it wasn’t enough. Once ST/OT started, I had been kicking myself that I didn’t get him evaluated for EI earlier, because all along I kept thinking EI was for low-income people, and we never qualify for services based on income, and my health insurance wasn’t great. So once I realized that EI could have evaluated him a lot sooner, I felt horribly guilty that I didn’t get him in around his 2nd birthday. Thus, I didn’t want to feel guilty for not taking him to the doctor if he needed to go to the doctor. So I made the appointment with the Developmental Pediatrician that the EI nurse evaluator gave me, no matter what the cost involved.
I only mentioned the appointment to Foo, not to discuss any of my or his concerns, rather just to let him know what we were going to do that day.
As I drove up to that appointment, I kept telling myself that on the drive back my life would be over. I would have an autism diagnosis, and my life would forever be changed. No going back to a more innocent time. The as-yet, unnamed fear would take form, it would have a name and a face. And it would be mine, ours, his. Forever.
I’m pretty good I guess at telling it like it is, for I didn’t sugarcoat anything for the intake nurse and doctor. I told them any and all concerns I had, wanting answers to quell the uneasiness inside. First the nurse’s questions, then the doctor’s observation. It didn’t take long for Dr. Ahrano to diagnose. She pointed out a couple of specific examples during Hamhock’s play about what a neurotypical kid would do with the “little people” that Hamhock didn’t do. He played with them like tools, not like people driving a car, eating a meal, going to bed, etc.
I had no clue. How could a mom be so clueless?
I had had my share of babysitting as a teenager. I read the baby books (for years, waiting and waiting for Hamhock to come). How could a mom be so unaware?
Dr. Ahrano was very kind, very gentle. I discovered that professionals are very careful when giving the “autism” label, that they’d rather give PDD-NOS, which just means developmental delays on the autism spectrum. On that front, she didn’t disappoint. But it was still all autism to me. I did discover it wasn’t Asperger’s, for kids with Asperger’s can talk. They don’t have verbal delays.
I cried the whole way home. Hamhock wasn’t aware enough or didn’t have enough communication to express, because he didn’t seem to notice. Superboy was noticing my moods by 18 months old. “You happy Mom? Don’t be sad.”
This, my sons, was making me sad. And still does.
I drove to my friend Meredith’s house to pick up Superboy. She was the first person I told, the first to have my tears on her shoulder.
Later that night, I didn’t even quite tell Foo the whole story, since we hadn’t yet openly talked about the possibility of autism. I don’t think I expressed to him the deep-down fears of my heart. I tried to blow off the appointment by saying it was just to make sure there wasn’t anything else we needed to be aware of for his language delay. That’s it. I didn’t want to dump on him this diagnosis, without preparing him. So I gently told him that the doctor did have some concerns about Hamhock’s language and play skills. The head-banging was a concern as well, and we were to go back in 2 weeks to meet with the child psychologist. I’m sure I mentioned “the word” but I followed that up by saying, let’s just see what the child psychologist would say.
Foo, Hamhock & I went to our follow-up appointment 2 weeks later. It was our 9th wedding anniversary. Again, Dr. Roth did not have any trouble diagnosing Hamhock on the spectrum. She clarified the Asperger’s, Autism, PDD-NOS triangle. She was again very gentle in communicating with us. It was nice that the doctor had the authority to tell Foo, instead of me bearing the bad news. I was so sad when I realized in the doctor’s office that I communicate with my 11 month old baby better than my 2 1/2 year old son. So sad.
The only thing that really bothered both Foo & I about the diagnoses was that the doctors didn’t give us any hope. They didn’t say anything like, here’s what you can do, what you want to do, where you want to look. It was as if they were handing you a death sentence, and were trying to be as gentle as possible in handing it over. Once we really dug into the current autism recovery research, we were mad that these professionals don’t offer anything other than a death sentence with a few hours of ST/OT, and parental support groups thrown in.
Thus began our journey.
The rest of that summer was from hell. July and August in Utah are hot and nasty. I started working 30 hours a week at night after dinner (to pay for the ABA therapy), because I was still nursing Superboy and I just didn’t want to leave my babies. I cried multiple times a day. We were just waiting waiting waiting to start Hamhock’s ABA therapy in September (hiring tutors, setting up his therapy room, buying supplies). He had only 2 hours of ST/OT a week. It wasn’t enough, so all I could do was daily feel guilty and scared because Hamhock needed more, and all I could do was wait until his program was ready. I was tired, exhausted, in pain, and my days ran from 6-7 am until after midnight 6 days a week.
Hamhock had EI playgroup twice a week, while Superboy and I would nap in the car. Playgroup was so hard. All ranges of disabilities were mixed in, so it makes a mom of a rambunctious autistic kid feel miserable when he hits the sweet little Downs Syndrome girl because he doesn’t know how to socially interact. The Downs girl “looks” disabled, and automatically engenders a sympathetic response. Many autistic kids don’t “look” disabled, and therefore engenders a “that kid needs discipline” response.
Yeah. Fun for the mom.
Unfortunately, we’re still in thick in the heart of the “fun”.