Today was one of the more aggravating days, and one in which my confidence level dropped significantly. Guess we can't stay on that mountaintop too long, eh? We were working on some phonics items with Kenny, trying to get him to identify the middle sound of multi-syllabic words. They were all consonant sounds and he has a terribly time identifying middle sounds, so when he suggested that the middle sound of balloon sounded like an "A", I said "No, that's a vowel...we are looking for a consonant sound.".
He gave me a totally blank stare and asked me "What's a vowel?". 3 1/2 years of reading instruction, the past 6 months of intensive phonics work starting once again at beginner level and now he is on the 3rd grade workbook and he seriously asks me "What's a vowel?". I responded "Tell me what the vowels are..." and he again stared blankly at me and said "I don't know what a vowel is.". I tried a different approach, "So what is a consonant?" and he said "I don't know either of them." I nudged "A, E..." expecting him to fill in the blank. He couldn't finish them.
Can I yell here, right now? Please? ARRRRGGGGHHHH!!!!!!!
I simply could not believe this. It is NOT as if we haven't used the terms "vowel" and "consonant" at LEAST 5,000 times over the past 6 months...or that he hasn't heard them used repeatedly over the past 3 years of school. But it was gone, totally, absolutely gone.
As was his address and phone number last night. Couldn't remember them to save his life.
And anyone dares wonder why Dominick and I fear so deeply for his future? He can recite every scene and detail in a cartoon, but can't remember his phone number or what letters are vowels after thousands of repeated presentations of the items in numerous ways, including visual.
After reviewing them, I then said "I want you to write all the vowels on the board 20 times.", so he goes to the board and writes:
Fails, fails, fails, fails, fails, fails....
I ask him "What in the world is that?" and he said "You told me to write "vowels" 20 times...that is what I am doing!". I said to him "Read what you just wrote" and he looks at it, points at the letters and says "See? Vowels...". This was not anything subliminal, he didn't even recognize it as the word "fails', nor could he spell "fails" either if I had asked him to. He not only didn't understand what I asked him to do, which was very clear, but he even spelled "vowels"...a word he has correctly spelled many, many times before...totally wrong. Didn't even HEAR the difference between a "V" and an "F".
This is what life is like with a child who has auditory processing disorder. This is a child whose brain just doesn't work right. We have been told by a specialist that he has "word retrieval" issues, that the "file cabinet", so to speak, is simply locked at certain times and he absolutely can not pull a word out of his brain that he definitely knows...or at least knew...and that it is not likely to ever get much better. That is the scary part, that this "broken" part of Kenny's brain is likely to remain this way at this stage. Oh, we may find ways to work with it, we may discover coping skills that help, but we can't repair what is not "firing" there.
To say I am depressed tonight would be an understatement. I also know that if it is this frustrating for me, it must be ten times as frustrating for Kenny. There are so many smaller, less obvious moments in our days that are like this that I no longer even notice it, nothing stands out because there is always this need to re-explain, to repeat, to break things down into far simpler components. I can never give him 2 step directions and expect they will be followed. He has a horrible time with "place" words, telling him look under something or to the right, or whatever simply doesn't work...he gets immediately confused and inevitably looks in just the opposite direction, no matter how much we have worked diligently on developing this skill he seems incapable of "getting it".
And yet for every monster, aggravating step backward, I know we have still gained some ground, no matter how small. The kicker is, I can still see how incredibly bright he is!! This kid who can't seem to remember his phone number, depending upon the day, can connect the dots in surprising ways. For example, today in geography we were talking about how the adult musk ox herd circles around young ones for protection...and Kenny pipes up "Mommy, that is just like the wagon trains did on their trips out west, they would circle to keep everyone safe." During history today we were all having a discussion after watching 30 minutes of news on CNN, and trying to discern what that was reported would be considered important to remember as part of history 20 or 30 years from now. We talked about the shooting in Arizona, and Kenny was the only one who immediately brought up how that might change how we protect our government leaders, and that it would cost us more in taxes to pay for it. I didn't lead him on that, he came up with that on his own...a HUGE "connect the dots" moment which is not at all startling for Kenny.
And yet he can't remember his vowels.
There are times when this so deeply saddens me, when I think of all he could become, and all he might never be able to be because of his deficits. We are doing everything humanly possible to help him overcome it, to help him achieve success, and yet there is this enormous brick wall that stands in the way. I don't know if we will ever scale it, or simply claw at crumbling brick as we make attempts over and over again.
Then there is Olesya, our easygoing, uncomplicated, sweetheart of a daughter for whom simple things like reading a thermometer and telling time seem totally out of reach. I was sharing with a friend tonight that I wonder if what we are feeling is normal frustration with kids who struggle, if this is heightened, if we really are working with brain development issues that will never fully resolve. With Josh, Angela and Matthew there are moments when things are difficult but the light bulb always eventually goes on and things get worked out. None of the 3 of them are geniuses, but they feel "normal" in their academic ability. Poor Kenny and Olesya feel so "stuck", and they are the two of our children who were institutionalized at young ages and remained that way. Was the deprivation so bad that areas of the brain just never fired up? Was there damage due to alcohol use which with Olesya we know is entirely possible? If that is true then why just these specific areas and not more global developmental delays?
And does it matter really? We are simply left to pick up the pieces and do the best we can...and reteach what the vowels are another 50 times if necessary, and do yet another 300 page workbook on telling time if we have to. What other option is there?
And who else will love them enough to do it?
This, my friends, is why we have to homeschool. Not because we feel it somehow makes us "elite", not because we feel the schools failed us, not because we think everyone ought to jump on the bandwagon right along with us, not because we want to shelter our kids from the world.
It is because we are the only ones who love them enough to keep beating our heads against the wall right beside them as they also do it. We won't give up, we won't pass them on, we won't let them give up on themselves. We believe in them and will keep trying until the day we die.
To top it off, we visited a new orthodontist this afternoon to begin the next phase of Kenny's orthodontic work which needs to be completed before we can move on with additional surgical attempts to once again close his palate. We found out it will be $6000+ for his braces, and that is a minimum. It might be more if we have jaw alignment issues as he grows, which is not uncommon in cleft kids and might mean even more bone grafts. This means we will be well over $10,000 in orthodontic work for him. I can't believe that a mere mouthful of wires can possibly cost that much!! We are thinking of visiting Home Depot and getting some wire, pliers and Krazy Glue, and making it a do-it-yourself project. When we left Matthew said "Hmmm...not a bad career to get into." Wonder if we can send him to dental school quickly! Hahaha!
Oh well, tomorrow is another day. Tomorrow we might remember our vowels, we might get the time right just once, we might even write the word "does" or "some" correctly.
Or not.
Either way, Mom and Dad are right here and will keep on trying. Because something I said years ago on this blog is still true, and has been instilled in our children as well. Do the hard thing, LaJoy's don't give up. Ever. Just because it is hard doesn't mean you don't do it.
Back to the hard thing...
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