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| Playing while we wait for the ear doctor |
I've also talked on here how Ezra has Echolalia. That's where you repeat the last thing that was said to you. For example, if I ask Ezra: do you want milk or juice? He will always say juice. But if 5 seconds after I ask the question if I switch it around and say: 'do you want juice or milk?' He will say milk. It gets tricky and complicated to figure out what it is that he wants. I usually will have to show him concrete items and have him choose that way. He also doesn't know how to answer a yes or no question and he will usually just copy whatever you just said. Ex: "Ezra, do you want to go to the park, yes or no?" And he will say: 'Go to the park, yes or no?'
Asher does not do this. He answers questions. He can tell me what he prefers, what book he wants to read, what he wants to drink, what he wants to eat, and if he wants to play outside. He can answer a yes or no question like nobody's business. He is awesome at answering questions! For that, I am so grateful. But, no one can understand what in the crap he is saying. Even me.
Asher has an ABA preschool teacher, a school speech therapist, a private speech therapist, and a private OT therapist. I have had three of his four therapist tell me that it sounds like (I mean this in the most respectable way possible) Asher has a deaf accent. Like he can't hear very well or hear himself speak very well so the speech that comes out isn't very easy to understand.
As an infant Asher had around six ear infections his first year of life. Our pediatrician said that if he got another ear infection that tubes would need to be put in. He never had another ear infection and so tubes were never placed. Also, around 18 months Asher had a hearing test through the county and he passed that hearing test. So even after his therapist told me that it sounded like he couldn't hear very well, I brushed it aside because he passed a hearing test 2 years ago.
Then I was spoke to a lady that goes to my church. She is Asher's teacher at church and she said the same thing to me: that it sounded like Asher couldn't hear very well. She told me about her son, who is now 7, and how he passed his hearing tests when he was Asher's age. She was not satisfied with that and so they took their son to an ENT who found a massive amount of fluid in his ears. They scheduled an out patient surgery, gave her son tubes, and within a few weeks he was speaking clearly and his language exploded. When she was telling me this, I just got this feeling that I should have Asher checked out too. I guess it doesn't hurt to rule it out, right?
I called my pediatrician and had her give me a referral for an ENT. I called and made our first appointment. Our first appointment was awful. First off, they told me to arrive 30 minutes prior to his appointment. Our appointment was at 2:30 so I took the boys out of therapy early (our speech therapy and OT is just across the street) and arrived at the office at 2:00 pm. The lady had me sign 4 papers, I gave her my insurance card and driver's license, and I paid the $30 copay. I looked at the clock and it was 2:03 pm. Awesome! So glad we came early.
The waiting room was filled with old people that looked very annoyed to have little kids around. Especially my kids. It was silent in the waiting room and there wasn't a single toy or book in sight. I thought that was weird. Then Ezra pooped his pants around 3:00 pm (an hour after we arrived!) so we had to take him to their teeny bathroom and take care of that. I brought lots of snacks and the iPad to pass the time. But the waiting room was teeny. It was hot and stuffy and we were all dying. Finally, by 4:00 pm they called us back. Yes, I am not kidding. We waited in the waiting room for 2 freaking hours. My kids were already climbing off the walls and I was about to die.
To put it nicely, the doctor was an arrogant jerk. I was already in a bad mood to begin with. In the treatment room we were waiting in, there were several photographs that were signed by the doctor. He had obviously taken them. When he came in I told him I liked his photos. He then went on and on and on about his hikes and the sabbatical he had just taken to this beautiful and weird place. After about 5 minutes of his boasting I said: "Looks like Bryce Canyon and Goblin Valley." He was surprised that I knew what the photos were and that finally shut him up. I grew up in Utah so it would be sad if I didn't know my Utah National Parks.
I explained to him why we were here and he was very dismissive of my concerns. He told me he felt like it was probably 'an Autism problem and not a hearing problem'. The mama bear in me wanted to punch him in the face. He agreed to look in Asher's ears. No surprise, he couldn't see his ear drum because his ears were caked with ear wax. This runs in Jason's family. Jason had similar problems when he was little. He had to get his ears professionally cleaned when he was young because his ear wax was so bad. The doctor said he would try to clean out the wax and see if he could see the ear drum.
He called in a nurse to help. The nurse looked like the giant from the Princess Bride. What's that guys name? Fezzik? This guy was huge and had a long beard and the biggest fattest hands I have ever seen. Asher began squirming and crying even before they put him up on the table. I knew this was not going to be good. The Fezzik nurse picked him up and laid him on the table. He told me to lay my body vertically over Asher's horizontal body. Then the nurse squeezed Asher's face in a death grip between his fat and large hands. Asher cried and screamed and squirmed his body. I looked up every minute or so and saw the doctor pulling out large chunks of black ear wax. After about 5 minutes I was dripping sweat on my forehead and my top lip. Asher did not stop fighting and it was so hard to hold him still. It absolutely broke my heart as he looked at me while tears were streaming down his face. In his screams I could recognize his speech: 'Mm mm mm Aaaaa din Aaaaa din'. Which translates to: 'Mama, all done! Mama, All done!!' My heart was breaking. After 10 minutes I looked up at the Fezzik nurse to see one large sweat drop running down the side of his face. I looked at Asher again and all of the hair around his face was completely drenched with sweat and his face was bright red. I have never felt so bad for one of my boys in my life. We were essentially torturing him.
The doctor finally vacuumed as much wax as he could out of his ears. We were done, finally. Asher jumped into my arms and cuddled into my neck. I was grateful that Asher wasn't mad at me after I laid my whole body on top of him and let someone torture him for over 10 minutes.
The doctor said that he got as much of the ear wax out that he could. But he still could not see Asher's ear drums. His ear drums were still covered in ear wax. He said that he couldn't clean the wax off because he could not take the chance that Asher squirm and move and he could potentially poke a hole in his ear drum. For that I am grateful. He said that there was nothing else he could do. He was not going to put Asher to sleep just to clean his ears. We scheduled a hearing test for the next day and the doctor said that if he passed the hearing test then he would not do anything else. Does that seem right?
Again, he was very dismissive and told me that he thought it was more of 'an Autism problem and not a hearing problem'. He said that he had never seen a 3 year old squirm so much and this was also 'an Autism problem'. In my opinion, he was a jackass. Excuse my french. It comes out every now and then.
Of course I left the office tired and absolutely deflated. My husband had been out of the country for work, so he was not reachable. I drove home with the kids and cried the whole way home. I try so hard to give these kids every chance and opportunity I can. And honestly, I was hoping that by some miracle or magic spell, that Asher's ears would be the problem. I prayed that maybe he just had a hearing problem and was misdiagnosed with Autism. I wanted him to have a hearing problem!!! How crazy is that?? And then I felt all of the problems of the world would be solved.
Nope, that's not the case. We went back the next day for a hearing test. Asher would not cooperate, so the test came back inconclusive. Although they think he can hear just fine. Again, the audiologist said that it was an 'autism problem and not a hearing problem'. But he still has wax caked on his ear drums. The doctor thinks that ear wax wouldn't affect his hearing and that I am crazy. Like I said earlier, this doctor is a jackass.
So here I am completely and utterly deflated. It doesn't seem right to me that Asher has so much ear wax in his ears and we just don't know if that is affecting his hearing. So, I scheduled a second opinion at a Pediatric Audiologist in Washington, DC. I am praying that they can give me some answers.
Update: I took Asher to the Pediatric Audiologist at Children's National. They were so nice there and actually got Asher to cooperate on most of the tests! It's amazing! I guess if you ask nicely and are a nice person then Asher will comply. The tests came back and Asher's hearing is normal. They also tested to see if there is any fluid on the ear drums- and no fluid. They concluded that he has perfectly healthy ears and a perfectly healthy amount of ear wax in his ears. This is good news! Now we know Asher will just have to start talking clearly the old fashioned way- by practicing!!
