When the team came from the early intervention program, they guessed that one reason Tomas wasn't talking was because he'd had so many ear infections he probably hadn't heard speech normally in a long time. That seemed plausible and that's what I suspected at first. I also thought that all the trauma of his early months might be having an affect on him.
I don't want to get into issues that will cause more hard feelings so I'm going to leave out the whys of some stuff and just say that T didn't get to his post-op appointment when it was originally scheduled. TB and I made an appointment with the surgeon in August. Poor Tomas--as soon as we got in the door, he put his hands over his ears and was very anxious. I can understand why! Lots of times he'd go to the doctor with an ear infection and he'd be in pain so that couldn't be fun! Also, his eardrum ruptured in May because of an infection and the doctor at the ER had to cauterize it--that must have been an awful experience too.
Happily, the surgeon looked at Tomas's ears and said they were fine, the tubes were still in place and there was no fluid. When we explained that Tomas wasn't talking, he thought it would be best to test the little guy's hearing. We scheduled another appointment but it didn't work out. Tomas didn't want to have anything to do with the booth and hadn't begun pointing to body parts (like eyes, ears, nose, mouth) yet and so the doctor said we'd have to take him to a pediatric audiologist.
TB and I took him twice. The first time, the audiologist was able to determine through a tympanic test that everything seemed to be working in the outer ear and we were happy to hear that. When we went into the booth, though, Tomas became very anxious. He cried and fought to get out, calming down when the audiologist brought in toys. The thing was, the little guy put on his blinders again and wouldn't respond to sounds. He'd look around sometimes when the audiologist talked to him. Then he began to hide his face. The audiologist suggested we wait 2 weeks and try again. Sometimes, he explained, the child's anxiety level goes down when he knows what to expect and then they're more successful...
Except that they weren't. If anything, the audiologist got less information from Tomas than before. His gut feeling, he told us, is that Tomas could hear but he couldn't document that based on the inconsistent responses. What's next? I asked. The audiologist said the only thing left would be an automatic brain stem response. Tomas would have to be anesthesized, there would be an IV involved...and I just shuddered. No way, I thought. I was convinced that Tomas could hear, too, but I didn't think he should be subjected to trauma like that.
After that second test, I called the early intervention program back and told the director what happened. I expressed my worry that Tomas had some autistic characteristics. She was a little taken aback by that but she said it was possible and the next step should be to have him evaluated by a pediatric psychologist or neurologist. She gave me a list of names and numbers.
Every single hospital program I called had a long waiting list for an initial appointment. The shortest was 7 months and the longest 18. I couldn't believe it! I called the audiologist and he gave me the name of a psychologist who'd been affiliated with Children's Hospital in Philadelphia (CHOP) but was now in private practive. Ah, much better luck there! I got an appointment for November. The one down side was that the practice did not accept any insurance. We'd have to pay $1200 in cash up front and hope to be reimbursed later. Linda had just started a new job and couldn't take time off and so Heidi and I drove T to Pennsylvania for the appointment.
Wow, was that ever an experience! Tomas was a happy little guy on the trip, had no problem going into the office and began playing with toys. The psychologist, a very kind and knowledgeable woman, talked to me for about a half hour and then I brought Tomas in. He carried in a little playhouse and readily sat down at the little table across from the doctor. He even smiled at her and made eye contact. Things went well until she took the house away and put the first test task (a picture book) on the table. He had a total meltdown and threw the book across the room. I got him calmed down and he did come back to the table but he absolutely refused to do any language tasks. Anytime the psychologist showed him a picture or tried to use the flip book, he pitched a gigantic fit! Puzzles were a different matter. He loves puzzles and did them quite readily. He even strung beads on a string, something I'd not seen him try before.
The psychologist said to me, I don't think he's autistic. He makes good eye contact, interacts with us, and seeks out our approval for tasks completed. Her theory was that something was wrong with his hearing. I told her about the failed audiological exams and she strongly urged me to get him scheduled for that automatic brain stem response. She didn't feel comfortable making a diagnosis until she knew the results of that test because the services he qualified for would be approached in such a different manner if he was hard of hearing. I asked, what if his hearing is normal? She said she didn't think that would be the case but if so, T's delays might be emotionally based.
We got an appointment for this ABR test at CHOP for the day before Thanksgiving! That was a total nightmare. This time, Linda took the day off to come with us because the procedure was so much more complicated and involved anesthesia. You would think that being a hospital specifically for children would mean that the place would be warm, friendly and comforting. It was, sort of, except from the child-friendly waiting area we had to go to 3 different areas for one test after the other. Tomas was tired and frustratred by the time we were led back to the outpatient surgical unit. We were assigned a stark, cold room. Although Tomas was given a sedative to help calm him, when the folks came in to hook up the IV and administer the anesthesia, he began to fight like a small tiger. With six people holding him down, it took 3 big doses of anesthesia to get him under completely.
The audiologist came in after he'd fallen asleep and did the test. His hearing is perfectly fine and in the normal range.
Afterwards, the staff seemed in a hurry to get us out of there. As heavily doped up as Tomas was, they wanted him waking up after an hour--and they didn't want to take out the IV. Well, the little guy sat up abruptly, didn't recognize Heidi or me (Linda had gone out for a smoke, the first time she'd left the room since the ordeal began) and began trying to tear the IV out of his hand.
Clearly, Tomas wasn't able to walk and whenever Linda tried to carry him, he'd begin fighting and thrashing. A nurse said, this is normal, it's the anesthesia wearing off. She wanted to show Linda how to restrain Tomas and carry him out--but we thought it would be better if Tomas rested longer. I guess the insurance company must have a limit or something on how long you can stay in the room because the nurses were just determined we should go.
Tomas screamed for 20 minutes and then fell back asleep. It was one of the worst experiences I've had. The only good to come out of it was that we knew for sure that Tomas's hearing was fine.
But now what?
The school district preschool team came to the house to evaluate Tomas the end of November. I gave their psychologist a copy of the doctor's report (from PA) and she took it. Still, they tried to evaluate Tomas on the same things...and had the same results. He'd do the puzzles and toss the ball but anytime they tried to get him to get him to do a language task he'd pitch a fit. That team told me candidly that they felt T was, indeed, on the autistic spectrum and that he'd be placed in a preschool classroom with other children who have pervasive developmental disorder.
Ah well. I'd been suspecting so for a long time.
There was one more test after that, in January, and this time with a pediatrician specializing in developmental disorders and other special needs. He barely looked at Tomas, just going with the answers he got from parents Linda and Kennan. He diagnosed Tomas with pervasive developmental disorder not otherwise specified.
More later.