Friday, January 3, 2014

It Doesn't Take a Brainiac.. and humiliating stories.

It doesn't take a brainiac..
People have been planting seeds in my head lately. A friend of mine suggested finding a babysitter/daycare, etc. to watch Sebastian & Willow for 2 hours a day M-Th (Scott telecommutes Friday). This would allow me one-on-one time with Judah (that he needs so badly) on a daily basis. Honestly, never occurred to us. Sometimes all you need is a friend with a functional brain & a working phone to hand you a solution that should have been obvious. We'll see if we can figure out a way to do this.

It doesn't take a brainiac..
We saw the ENT doc this morning. He was not big on the idea of ABR testing for Judah. He thought it wouldn't be helpful & would be a waste of money. He expressed similar feelings towards speech therapy, just as Judah's last pediatrician (Dr. Griffin) had done. I asked him if there were any risks in the ABR testing procedure & if Judah would be in any pain. He answered "no". 

He believes Judah is choosing what he does & doesn't respond to, and that he understands language just fine. I used to think the same, that Judah was just being stubborn. But he's been "stubborn" for a damn long time, don't ya think?? I absolutely believe that he understands language and knows what's going on around him, but I don't think he is choosing to not respond. I think his brain is telling him to respond in a different way than a typical brain would. Temple Grandin points out in her latest book that people with autism often have difficulty making eye contact (very true). She believes their brain tells them to look in a different direction. To them, that feels right. To me, that makes sense. She's been studying the brain for years & has lived with autism for nearly 70 years. So if the brain is at the heart of all this (which many believe & seems to make sense), why not do an ABR test? Why not do an apparently risk-free, pain-free Auditory BRAINSTEM Response test?

The ENT doc also threw into the conversation something we've heard for the past 2 years, from many different people - "He's just a slow starter, before you know it he'll be talking just fine." It's almost insulting to hear that from a doctor at this point. "Eh, he'll be fine.. don't worry about it.." I'm starting to think this guy is chums with Dr. Griffin.

It doesn't take a brainiac..
Anyway, back to the seeds.. Salem has no doctors who specialize in autism, so we have been looking for autism specialists in Portland. We have found them. Most are not seeing new patients, & the one or two (maybe 3) who are have a waiting list that takes a year to get to the top of. We do have a Sept. appointment with one of these doctors. The ENT doctor made a simple suggestion - again, simple solution floating right in front of us & completely invisible to us for some reason (well lots of reasons). He suggested calling doctor's offices in town to see if we could find out what pediatricians (not specialists) have experience in this area. He suggested even trying to seek out doctors that have children who share Judah's diagnosis. We'll do this, soon.

It doesn't take a brainiac..
The ENT doc emphasized teaching a lot, because people learn differently. Finding out how Judah learns would essentially be finding the golden ticket in a Wonka bar. I mentioned that the ABR testing could give us answers that help us figure out how to teach him. He agreed.

By the way, the new therapist Judah may be seeing will work in this direciton- to hopefully figure out how he learns best.

The ENT doc pushed me a bit, pushed my thinking. He was amazed at how Judah could concentrate on a medical diagram on the wall during all of our conversation. He pointed out that most people could not do that. He found Judah's strengths to be amazing. He talked about doctors and told us that he would bet many of them have ADHD, which has essentially propelled them into their career. Obviously Asperger's, same story. Without it we wouldn't have the internet. It's just important to remember that Judah stands in the same light those people do. In a sense, he is blessed. His perception of the world is unique. The ENT doc believes that his strengths will be stronger than most, but at the same time he will have more areas of difficulty & struggle than a lot of people do. The ENT doctor is right about that one.

As far as ENT goes we have hit the end of the road. Now we move on to the Portland doctors.

Judah passed his hearing test today by the way. He always does. The audiologist doctor (yes they do exist) said she could see that the tube in his right ear was open, but the left one she couldn't determine.

Judah weighs 37 pounds and is 48 inches tall. He's 4 years and 1 month.

Sebastian & Willow stayed with Gramma while we went to the ENT. They made cookies & played outside. I got a chance to see Gramma's new ride. It's very pretty.

Sebastian rode in the van for the first time today. He was elated. He made Gramma come out to see him sitting in the back seat (his new seat). He made her open & close the sliding doors.

On the way back from the ENT, Judah and I stopped at Wal-Mart. (I won't make this story too detailed.) I needed to grab some baby food, a timer for the lights and of course dash through the Christmas clearance.

In hardware an employee directed me to the timers. He was already scowling at Judah because he could see that Judah was messing with things he shouldn't be. As the man starts to walk away Judah begins throwing metal pieces of hardware from the bottom shelf onto the floor. The man turns around to see what is going on, stares for a minute, turns around & walks away. Whew.

In Christmas clearance I was able to stop him before he threw the glass ornaments & jars.

Also in Christmas clearance, Judah saw the huge ladder on wheels & couldn't resist. I pulled him off of it a couple of times. He didn't make it up much past the chain. Then I turn around to see him nearing the top of the ladder. I couldn't even reach him!!

Ten minutes later.. Judah sets off the fire alarm... which didn't turn off for what felt like hours.. it was blaring the rest of the time we were there.

As we are checking out I feel something smooth on my belly. Thankfully I had one of my buttons buttoned on my jacket because my pretty new tube top was almost at my waist.

Yes, all true.


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