Today, we had the first of three sets of appointments at the Cleveland Clinic Autism Center. Due to some erroneous driving directions, we arrived forty-five minutes late. That wasn’t a pleasant ride. Philip handled the time in the car surprisingly well, only crying once. But he was itching to get out by the time we finally parked the car.
I had phoned to let them know we were on our way but would be late. After a four-month wait, we were worried that our delayed arrival would lead to a cancellation. But the staff was very kind and just happy to hear we were on our way. When I was standing at the registration desk once we finally arrived, I heard an employee talking to another lost visitor on the phone while she followed their route on an online map.
Feeling frazzled, I handed over my insurance card. I had to sign some more consent forms. We also found out that we had to correct the standardized assessment. Apparently, we weren’t permitted to answer “Don’t know” more than twice in a section.
Answers corrected and forms signed, we sat to wait. Well, Peter and I sat. Philip had gone over to a toy mounted on the waiting room wall.
We only had to wait a few minutes before the pediatrician came to get us. She walked us back to a room with toys and books, chairs for parents and a small table holding a laptop and a chair for the doctor. Philip immediately went to play with the toys.
The doctor referred to one of the forms we had filled out and asked related questions. As the pediatrician on the team, she was there to focus on his physical development, although she did ask questions related to communication and social interaction. She observed Philip while talking to us and taking notes.
The pediatrician asked us how Philip reacts at the doctor’s office. Peter and I were in consensus-he hates it. So far, since there was no exam table in this space, he had been happily playing. The doctor was understanding and told us that she often is unable to do a complete exam at these screenings. But she did as much as she could. She sat on the floor and picked up one of the books that Philip had been playing with. Then she casually took her stethoscope, slowly moved it under Philip’s shirt and attempted to listen to his heart. She was able to hear it briefly before he squirmed and pushed her hands away. She tried to sneak it to his back, but that didn’t work.
When she asked if Philip had any birthmarks, we told her about the nevus on his stomach. Peter held Philip and lifted his shirt so that the pediatrician could see it. She told us it wasn’t a concern at this point, especially since we have enough issues to deal with at this time.
Next, we had to exit this room to go to an examination room. Philip balked at the doorway and cried when we entered, but actually stood on the scale long enough to be weighed in at 35.6 pounds. He didn’t like getting his height measured, crying as I held him next to the wall while the doctor slid down the plastic disk until it touched his crown. Peter says he thinks it read 100 cm.
Then it was back to the original room. Philip stopped crying and resumed playing on the floor. The doctor talked to us about genetic testing, including voluntary participation in a research project. The pediatrician then asked a few more questions and explained the rest of the process before departing. She left the door ajar to let air into the small room, but Philip pushed it shut. Peter tried to open it up, but Philip closed it again.
The next step in the process was to meet with the psychiatrist. We had to open the door for her because it was locked. The psychiatrist will also be the only person we will meet with in our final appointment. At that time, she will report back on the findings from all of the others on the team who will observe and evaluate Philip. Before leaving, the pediatrician had said we wouldn’t see her again, but that she would be available by phone if we had any questions.
The psychiatrist appeared to be using some standardized assessment. She asked the questions on the form and marked the answers on the form. She, too, observed Philip while we spoke. She got to see him take most of the books out of the case and arrange them on the floor. Ironically, Philip didn’t spin once during either appointment.
I was surprised by some of the answers that Peter was able to provide. Since Peter spends all day with Philip, he gets the opportunity to observe behaviors that I miss. My brain is too fried to recall an example, but it made me realize how important it was for both of us to be there.
Soon this doctor reached the end of her list of questions. It was time to head out, but I knew Philip needed a diaper change first. I sang the diaper-changing song, and he did lay still on the changing table in the public restroom. However, as I expected, he cried the entire time.
It was back to the waiting room to put on coats. Philip played at the wall one more time before we exited. He had fun splashing in puddles on the way to the car. We loaded him in and gave him some milk for the ride back.
The ride back was also stressful. It took us 45 minutes to figure out how to get back to the interstate. The freezing rain had just turned into rain by this time, but it still affected visibility. Philip didn’t mind. He even laughed a few times before falling asleep. He stayed asleep for the hour it took to drive south, stop for gas on the way and then finally get back to Ashland.