Wednesday, November 30, 2011

Brendan's Vision Diagnosis

It has taken me a few hours to assimilate the information given to us by the vision specialist yesterday. If you will indulge me a bit, this post will likely be a bit more of a "rant" than normal. I am just gonna be frank here. Can I be Frank? Okay, just call me Frank! "Frank, you say... "

Yes, I am a bit punchy. I haven't had much sleep. I can't sleep. My mind is on overload and I am WAY stressed out. I am working on my trust issues with God. I do okay a lot of the time but after a night of tossing and turning, I don't have my normal ability to "cast all my cares upon Him". I know, I know...that's when I should be doing the best at it!

Our conference call with the vision specialist took place yesterday afternoon. Mom was in her office for the call and Randy and I were patched in. The whole via-teleconference thing was hard.

One of the first things she asked was if we had had Brendan tested for Aspergers Syndrome. I told her that we had indeed had him tested both by a psychiatrist and a developmental psychologist. Aspergers was ruled out. Over the two hour conference, she mentioned Aspergers many times. It was as though she couldn't get beyond her big idea that he had Aspergers! Her other points:

While Brendan sees 20/20 on a vision test, his eyes don't function together as they should. I am trying to re-create it the way I understand it so it is more understandable for folks without these issues.

The first issue is with eye movement. Most people have the ability to accurately follow a moving target and shift their eyes from one point to another with ease. Brendan cannot do this. It requires gross motor (movement of his head and neck) movement for him to function as opposed to fine motor (eye shift). The goal here was 50% - Brendan was less than 1% in vertical and 1-5% in horizontal. I know. Those numbers don't mean much to me either. I just know they aren't great! The diagnosis of this part of the exam was Oculomotor Dysfunction. Have you had him tested for Aspergers syndrome?

In real life this means that Brendan will lose his place frequently, skip or omit words, have a difficult time copying from the board and have a really hard time performing in any sporting activities. It is totally amazing to me that he can ride a bicycle and played basketball for many years - even making a basket every once in a while!

The next piece dealt with the ability to focus the eyes rapidly and automatically. Reading and writing both require the eyes to be able to focus for long periods of time. Coping from one place to the other (the chalk or marker board) requires a change in focus from long distance to near. Obviously this is also linked to the ability to sustain visual attention. The goal for Brendan was 10 cycles per minute. He was able to do 5. The diagnosis for this part was Accommodative Infacility. We really do need to consider the fact that he likely has Aspergers...

Probably the biggest piece of the puzzle was the binocular integration. God designed our eyes and muscles to work together with such a high degree of precision that both eyes perform as if they were one. This ability is related to eye movement control and focusing ability. Since both of those are off somewhat, it stands to reason that instead of working as a team, Brendan's eyes have some rivalry in the ranks! Sure enough, we have big issues here! We won the diagnosis lottery in this area and got a two-for-one deal: Binocular Dysfunction and Convergence Excess.

To accomodate, his brain just shuts down one of his eyes at near range. He is totally blind in one eye when he is reading or looking at things close up. He also has an extremely slow response in focusing on anything requiring fine depth discrimination - meaning his depth perception is way off. There is a good chance that Aspergers Syndrome has some meaning to his diagnosis.

Again, the test measurements don't mean anything to me but to give you an idea, the goal for far distance was 12 pd (prism diopters) and Brendan made it to 4. The goes for near distance was 25 pd and Brendan made it to 6. The time it took for the two eyes to fuse images to allow depth perception was 70 arc seconds (whatever an "arc second" is!) with normal being 20 arc seconds.

So, lets take a look at what that looks like for Brendan practically. This is what a white marker board looks like with a few words written on it.

This would be a typical assignment and this is how you or I would see it... Aspergers?
Now let's make it doubled like Brendan sees it...
And let's add in the "I-can't-focus-the-dumb-thing-so-it-looks-like-I'm-drunk" bit... I'm pretty sure this is how it looks to folks with Aspergers Syndrome.
And you get just a clue as to why he was barely passing in classes that required him to write notes off of the chalkboard! It makes my head hurt to look at just that little piece...image your whole world in full color looking like that...MOVING...for THIRTEEN YEARS! If that isn't overwhelming to you than you are way stronger than I am!

And then the doctor has the audacity to ask if he has Aspergers!! Uh, no, lady, he is on sensory overload from the vision issues you just told us about in great detail!

I was in tears. I cried a bit and then I did what all red-blooded American women do in a crisis (after the chocolate)...I picked up the phone...
  • I called my sister. Dori is an RN. She has known Brendan since before he was born. Her husband is a school counselor. "Do you think Brendan has Aspergers?" "NO!!" I love my sister!
  • I called my sister-in-law. Kim is an Occupational Therapist. Kim has many years of experience working with a child with autistic-like tendencies. She too has known Brendan since before he was born. "Do you think Brendan has Aspergers?" "No...I really don't. Why do you ask? I have a check list at home we could consult...I really have found that 'Aspergers' is the new catch-phrase for diagnosticians to use..." I love my sister-in-law!
  • I called my BFF. Sandie is a teacher. But not just any teacher...she is the team lead for special education in a junior high. Sandie has known Brendan for five years. "Do you think Brendan has Aspergers?" "No! Who told you that?..." (I won't repeat the rest as I wish to keep this family friendly. Let's just say Sandie got a bit defensive on my behalf. I love Sandie!)
  • I called my Mom. My mom didn't even know what Aspergers was. She had been sitting in the doctor's office listening in when the doctor had said that though and she remembered it. She went from there to the school. She walked into the office of Ms. Whorton, the Principal Sent from God. She told Ms. Whorton what the doctor had said. Ms. Whorton said something along the lines of "I really think that 'Aspergers' is the new catch-phrase for diagnosis when they don't know what else to say and I don't think Brendan has it." I love my mom... and I love Ms. Whorton!
Evidence based medicine and my critical thinking skills (thank you nursing school for those long words there - they keep me from sounding like I belong on an episode of My Big Redneck Wedding!) tells me that our son does not have Aspergers Syndrome. He does have some neurological issues. We will get therapy for those issues. The therapy may or may not work. If it does not work, we will figure out something else that will.

Please know that if at the end of the day he does have Aspergers Syndrome, we will still love him and I have absolutely nothing in the world against anyone with this syndrome. I just think with all the other issues he is dealing with, it is a bit ludicrous to pile something on that the child doesn't have just so you can slap a label on it and feel better about yourself! And at what point did a optometrist (even a developmental specialist in the field) gain the training necessary to diagnose Aspergers?

Sunday, November 13, 2011

Brendan and my Prayer Closet

Several of you have kindly asked about Brendan and how he is doing. I think he is doing very well. (Though he mostly doesn't seem to want us to know that!) His grades are excellent though we are working to make certain he is being challenged enough. Since he can type most everything he needs to write in class now, it seems a big obstruction to his learning has been resolved. He did several hours of testing with the vision specialist this past week - we won't have a report on that until later in November. She has indicated that he has several issues with his eyes that will likely require therapy. Please help us pray about that - from what I have been able to research on his conditions, the therapy can be painful and make you very nauseated. In Europe one of his conditions is commonly treated with surgery - I am hoping we don't have to even consider that! It just makes me queasy to think about getting anything that close to his eye that cuts! I know they do it all the time, just one of the things that makes me kinda sickish-feeling to think about...
When you live way out in the country and trick-or-treating is not an option, (it just isn't worth it to drive a mile to the neighbor's house to get a candy bar!) you do a weeny roast! Brendan has wanted a bon fire since it has turned cool in the evenings and we finally talked Grammy and Papa into doing it for a fun activity on October 31st. When Grammy sent me these pictures, I was a bit surprised to see they had their fire in the trash barrel...(no trash truck to pick up garbage in the country either!) but then I noticed they were actually burning wood...and then I noticed all the dry leaves and finally figured out that was better than some of the scenarios that could have played out! The trash barrel is good. Really.
What tastes better than a weenie roasted over an open fire on a cool October evening in the Ozark Mountains?
S'MORES! Nuff said!
Aunt Dori and her family came down on the weekend to take their RV to a state park close to Ft. Smith. Brendan enjoyed playing on this rock with the two E's...These flat rocks are one of the things I like the most about the mountains in Arkansas.
Brendan and Ellie are laughing around the fire...
'K...this isn't what it looks like! I was a bit disturbed at this picture. It looks like Brendan is about to whack the red off of poor Ellie's hair! Not so. Aunt Dori reports that she told them to "strike a pose" and this is what they came up with. So they aren't gonna make Vogue anytime soon-looks like they still had fun!

We are making it here at home. Today marks the point when we can say "Brendan comes home next week"! They will leave after church on Sunday and drive all or part of the way to Katy. So "the Lord willin'" we will get to see our boy Sunday or Monday! We are all very excited!

I have discovered that this trial has been bearable only one day at the time. Sometimes I can't even think about a whole day - I have to do it moment-by-moment. I spend a lot of time in my "prayer closet". When I was younger and Dad would preach about his "prayer closet" I always wondered where in the world that was. I always pictured a dark tiny room with only room to squat in the corner and cry out to God! I didn't realize that was "pastoral speak" for a not-so-literal place! I, however, have an actual prayer closet! I don't do so well with staying focused on only one thing at the time.

Like, for instance, I can't just sit and watch a TV show. I have to be doing sewing or painting or beading or something! I think I drive poor Randy crazy. But he loves televised sports so I'm thinking we might just even out in the "driving crazy" regard! Is there anything worse than the sound of a huge crowd roaring above a bad organ (or school band) playing a "charge"? I think not. But I digress. And if you are a huge fan of televised sports, I'm sorry. And your wife has my sympathies!

Back to me. I have learned that I can get a lot of time with the Father in while I am sewing. I have been sewing since I was ten-years old and for me it is not tedious or difficult. I mostly can sew without paying a lot of attention to the actual construction. So when I feel the need, I sew. ( think I'll call my next devotional book "So She Sews"! Just kidding. I have no plans to write a devotional book. But it's a cute name anyway, huh? I thought you might like to get a peek inside my personal prayer closet.
At one time I had a gi-hugic room all for myself for the sole purpose of expending creative energy. I did not appreciate what I had. It was taken from me.

When we moved into the incredibly lovely home we now reside in, I had a beautiful (albeit much smaller) room for sewing and jewelry-making. I did not appreciate it. It too was taken from me.
Now I have the end of the dining room to use in any way I see fit-as long as I can stand the mess! This space does not have a door on it. You can see it from the entry way (translate: total strangers can see inside my prayer closet when they stop by to sell me another Kirby vacuum cleaner). I do appreciate it. I so much appreciate having sewing machines (yes, plural! I have an embroidery machine, a serger, two regular sewing machines and an older more heavy machine for upholstery work), lots of fun fabric, thread, beads, and way more other stuff to play with than I care to admit here! I have spent many hours lately thanking our Creator for all the stuff I have at my disposal with which to create.
So I am spending time in my prayer closet and you know what? God is good! He has given us a wonderful peace that we are doing the right thing. Yes, it is still incredibly hard. Yes, we miss our boy so bad it hurts. There are certainly moments when I wonder if the pain will ever get better. But the same God that is at work in Katy is working even harder on the top of a little mountain in Arkansas and one day it will all be better! And we get to see Brendan for several glorious days next week! How do you spend your time with God?

Tuesday, November 1, 2011

What a whirlwind. No really...I am all turned around just thinking about everything.
  • Brendan started school
  • He said he loved it the first day
  • Today wasn't as great
  • He chipped a tooth and Grammy had to take him to the dentist in Sallisaw, OK to fix it
  • It was just a little chip so it didn't require a shot
  • He had his "pre-test" visit to the vision specialist in Fort Smith, AR
  • She said he has many "issues"
  • It will take two to three months to complete testing and get reports
  • She said he has a fine-motor deficiency with his eye tracking
  • He will need a lot of therapy
  • He had a visit with the Really Awesome Chiropractor in Van Buren, AR
  • Dr. Dave said he has scoliosis that we can likely correct with "lifts" in his shoes
  • Dr. Dave said one of his arches is falling worse than the other one
  • Brendan discovered his shoes are too small
  • This required a side trip today to Academy
  • Papa found a teacher for saxophone but somehow they haven't had time to go find a sax...wonder why?
And we are only to Tuesday! I am exhausted just thinking about it all! I have certainly spent my share of time in a fetal position crying these days and I'm sure my Mom wants to but just doesn't have the energy to curl up that far! The financial load is becoming very overwhelming. Testing, therapy and treatments for all these issues is running into the tens of thousands of dollars. I get so very frustrated that the doctors insist on doing things to make more money off of us. None of them seem to take our insurance (but they do take Medicaid...)so they all want money up front...a LOT of money! When Mom made the appointment for the vision specialist, it costs $125 for the "pre-visit" to screen him to see if he needed to be tested. The tests themselves will cost over $400. Then $125 or so every week when he gets therapy...and on and on it goes.

We are making it here at home. It still seems so empty and lonely with our boy not here...we are all counting the days until Thanksgiving break - now just pray we can manage to let him go back to Arkansas!