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...
19 comments:
I'm so sorry that Kenny is having such a hard time. I cannot begin to imagine the frustration you both feel. I thought this link could be a little helpful for you both as it is by a woman with APD who was at college & has a successful career, about how it affects her, how she hears and what helps her cope. I thought it would be nice for Kenny to see others also go on to succeed despite the APD. http://qw88nb88.wordpress.com/living-with-auditory-processing-disorder/
Sometimes turning concepts and such into made up little songs and jingles makes it easier for kids to remember them. Not saying it would work here, but might be something to try. If nothing else, it might be fun for them to sing the songs!
I also was going to suggest making your address and phone number into a jingle, which is what I had to do for a couple of our kids. We also had a little jingle for vowels, repeating in twice in the "song". Maybe even adding some body movements, clapping, touching the letters as he "sings"? A couple of our kids just could not catch the concept of numbers to save their soul when I taught them that K year at home. It was frustrating to ask them the same question in different ways, trying to dance right up to the answer without giving it to them...and they still could not get it. I do think there is actually something real called "math anxiety"...or probably "reading anxiety", too! Or it's just that when something is hard for us, we panic...and then our brains shut down.
All of our kids adopted internationally have struggled with math. My own theory has to do with them having less experience with manipulatives in early childhood, as well as just not having that "math talk" that naturally happens from toddlerhood. "Bring Mommy those two socks on your bed." or "Take this big cookie to Daddy." and such. Just things we don't even think about that we say to our kids early on about numbers, amounts, sizes, colors, etc. Our kids all lived at the same orphanage, where they did have experiences with toys, crafts, outings to children's museums, etc. But watching a video once of our oldest from Guatemala, I noticed one 2yr old playing with blocks. As she was playing, a baby began crawling towards her. She immediately turned her body to protect her toys from his hands. It dawned on me that even if they did have some toys, they shared and protected them with and from 25other kids. So maybe their little brains spent less time learning about those manipulatives and more time just claiming them as their own. That's just some thoughts that stick in my own brain as to why our four struggled so much with math. Even though their caretakers were very loving and involved, it wasn't like being in a family, where parents have tons of daily conversations about math concepts without even realizing it. I believe our kids were busy "surviving", even in as good a place they were in...surviving in terms of working to get the attention they craved. Also, I read somewhere along the way, that when our kids are learnng a new language, they might have to totally throw out any toughts of math for time, that they are simply too busy learning how to communicate and comprehend words. Math might go by the wayside for a time. I felt I needed to go back and just talk to our daughter about some of the ways and reasons we use math, what it's for, how it helps us, make it more "kid friendly" and reasonable that we learn it. Maybe that might take some of the fear out of it for Olesya, bring any "fear factor" down a notch? And my own thought is also that some kids just "catch" math later,as some can only learn to read at a later age. The less "fear and panic" that can be associated with it in their minds,the more successful I think they will become with the things they struggle with. Seems to work that way with adults, anyway.
Going to have to split my comment into two again!
Nancy in the Midwest
Answers? None, except time...to encourage you that three of our kids who struggled with math concepts are now working on algebra of some type (pre Al, Alg I and Alg II). They're not great at math, but seem to have learned how to work with numbers.
Our last daughter could NOT learn her math facts, either home or at school. She would maybe get it one time while we went through flash cards, and then two cards later... no clue. None. Of course, that makes everything about math difficult. But somehow, not even because we were so good at remembering to work at home with her, she started to remember. or her, I think it was confidence that just had to be gained about her ability to learn, and not just math. She only now, after three years of blank stares, knows most of her facts.
Hope this encourages you that more time and repetition might help in some or all of these areas, though I know little about the actual diagnosis of auditory processing disorders.
Though, on second thought, this might actually be something my husband has! He simply cannot hear the difference between some letters. We have a niece Meg, but he doesn't hear the difference between Meg and Mag. He says "southmore" rather than "sophomore" and "Allburn" instead of "Auburn"...though my guys were rooting for the Oregon Ducks last night. There are other words too, but not so many that he doesn't sound as smart as he is. I try to repeat the correct word to him when those things come up, he will say it correctly, but he simply doesn't remember or hear the next time how he is saying some words wrong. He had a lot of trouble with reading as a child, avoided it as much as possible, despite his librarian mother's great attempts. When our older kids were little, he red "Little House" books to them at night. He enjoyed the books and his reading improved dramatically. He actually began to love reading! He remembers the day they moved him down to "bluebirds", a lower reading level at school. I think he had some PTS with reading for his lack of success with it.
So, just to say that maybe it's going to take much, much more frustrated repetition, but in time, I think you will see more success and more ways your kids have compensated to make up for those gaps. Plus, how many times as an adult to we have to explain what a vowel is? I know it's important foundational material, but in the end...Kenny probably won't need to stand in front of any crowd with a laser light and discuss vowels in a board meeting!
And myself? I had a very hard time learning to tell time. My aunt asked me the time once, and I couldn't do it. She said, "You're in 6th grade, and you can't tell time?" For some reason, that learning escaped me. I can do it now, but I honestly still have trouble thinking through how much time until, before, between without looking at a clock face and even sometimes rotating the hands in my brain. I don't think of it in terms of a subtraction or addition problem, I want to see the time elapsed on the face. I'm not so great with math, either!
Hang in there. I do know about head banging, as I just could not understand how hard my kids were making some things I thought should have been easier. I do know that the more frustrated I became, the more their own level of fear increased at not knowing the answer. I'm sure you are more patient than I was. I told more than one of my kids that I believed they could learn it, that fear and panic was just getting in the way, blocking their learning. In our case, that seemed to be part of it, too.
Hope you don't mind me "blogging" on your blog. You just open up common experiences I can relate to, Cindy.
Nancy in the Midwest
Answers? None, except time...to encourage you that three of our kids who struggled with math concepts are now working on algebra of some type (pre Al, Alg I and Alg II). They're not great at math, but seem to have learned how to work with numbers.
Our last daughter could NOT learn her math facts, either home or at school. She would maybe get it one time while we went through flash cards, and then two cards later... no clue. None. Of course, that makes everything about math difficult. But somehow, not even because we were so good at remembering to work at home with her, she started to remember. or her, I think it was confidence that just had to be gained about her ability to learn, and not just math. She only now, after three years of blank stares, knows most of her facts.
Hope this encourages you that more time and repetition might help in some or all of these areas, though I know little about the actual diagnosis of auditory processing disorders.
Though, on second thought, this might actually be something my husband has! He simply cannot hear the difference between some letters. We have a niece Meg, but he doesn't hear the difference between Meg and Mag. He says "southmore" rather than "sophomore" and "Allburn" instead of "Auburn"...though my guys were rooting for the Oregon Ducks last night. There are other words too, but not so many that he doesn't sound as smart as he is. I try to repeat the correct word to him when those things come up, he will say it correctly, but he simply doesn't remember or hear the next time how he is saying some words wrong. He had a lot of trouble with reading as a child, avoided it as much as possible, despite his librarian mother's great attempts. When our older kids were little, he red "Little House" books to them at night. He enjoyed the books and his reading improved dramatically. He actually began to love reading! He remembers the day they moved him down to "bluebirds", a lower reading level at school. I think he had some PTS with reading for his lack of success with it.
So, just to say that maybe it's going to take much, much more frustrated repetition, but in time, I think you will see more success and more ways your kids have compensated to make up for those gaps. Plus, how many times as an adult to we have to explain what a vowel is? I know it's important foundational material, but in the end...Kenny probably won't need to stand in front of any crowd with a laser light and discuss vowels in a board meeting!
And myself? I had a very hard time learning to tell time. My aunt asked me the time once, and I couldn't do it. She said, "You're in 6th grade, and you can't tell time?" For some reason, that learning escaped me. I can do it now, but I honestly still have trouble thinking through how much time until, before, between without looking at a clock face and even sometimes rotating the hands in my brain. I don't think of it in terms of a subtraction or addition problem, I want to see the time elapsed on the face. I'm not so great with math, either!
Hang in there. I do know about head banging, as I just could not understand how hard my kids were making some things I thought should have been easier. I do know that the more frustrated I became, the more their own level of fear increased at not knowing the answer. I'm sure you are more patient than I was. I told more than one of my kids that I believed they could learn it, that fear and panic was just getting in the way, blocking their learning. In our case, that seemed to be part of it, too.
Hope you don't mind me "blogging" on your blog. You just open up common experiences I can relate to, Cindy.
Nancy in the Midwest
Oh geesh...how did THAT happen? Two times too long? Sorry!
Nancy again
Cindy -
Did you ever read the Temple Grandin book I sent? I think it might be time if you haven't - her learning disabilities turned around to make her a genius in what she does. They did not go away nor does she really compensate for them, but in what she does today, they work for her. A change of perspective might turn weakness into strength. Just a quick thought.
Kelly in Vegas
I ought to read Temple Grandin...I am trying to teach a child with the same learning disability. Hey, Cindy! We can have a book club ;)
I can feel your frustration, but on a much smaller scale. I think that there is SO much that institutionalization does do their little brains that we have no idea about. Of course, every child is affected differently, too. I can tell a huge difference in my son's ability to process info vs my daughter's. He only spent 6 more months in an orphanage than she did. You are doing a great job, hang in there!
I forgot to mention the Temple Granden DVD, as it's an amazing story your kids would like...I think. It is the remarkable story of how she revolutionized the cattle industry by designing new ways to handle them. Her way of seeing, hearing, creating things with autism is protrayed in a neat way in the movie. It shows how she was able to use her "exceptionalities" to benefit others. I bought the DVD at Walmart. Our daughter is in grad school, furthering her special ed degree, and I bought another copy for her to take back to OH after Christmas. I think it's an amazing story.
Nancy in the Midwest
Cindy - try using a few sign language signs. It helps my two who have processing issues and word recall. Sometimes taking a brain break (just a minute break form what they are trying to pullup) can help them. With S, it helps to tell her "think". She won't always come up with the right answer but will usually get something close and I help her get to the correct word. It's very tough but try not to show kenny that you are frustrated. For S, I've used the "sometimes it happens" which seems to help the stress she puts on herself when trying tocome up with a word or answer. Pictures help her also. Good luck.............Cat
Have you had their vision checked? My daughter, adopted from Kaz,has just been diagnosed with a tracking issue that will need vision therapy to correct. In talking to the vision therapist there are an amazing number of issues that can stem from vision issues. I was amazed. We are now going to have our middle daughter, also from Kaz, evaluated. I was thinking she had sensory disorder but it may be her vision. We will see. Anyway just something else to consider.
Have you had their vision checked? My daughter, adopted from Kaz,has just been diagnosed with a tracking issue that will need vision therapy to correct. In talking to the vision therapist there are an amazing number of issues that can stem from vision issues. I was amazed. We are now going to have our middle daughter, also from Kaz, evaluated. I was thinking she had sensory disorder but it may be her vision. We will see. Anyway just something else to consider.
"reading a thermometer and telling time seem totally out of reach."
I am convinced that S is the reason they made digital - so she can read them!
cat
Cindy, both as a teacher and a parent I have experienced this and I know how frustrating it can be. I can remember having on a test a question about where you should go to stay safe during a flood. We had talked about it, done emergency plans, reserched it on the computer, done labs around it, and I still got some answers like "go to your basement." It made me bonkers and I felt like I had let those kids down. When I passed back the test (and I do this almost every time.) I talked with the kids who missed this question. When I re-worded it almost all of them got it right. Many just didn't process the question in the way I was expecting them too. The biggest thing I learn from any test is what I missed teaching them, and how well they can comprehen the question I am asking. Rarely is it that they don't have a clue if I have really covered it.
With Kenny, he seems like Isaac as far as auditory processing. When did he get tubes in his ears? Isaac did not get tubes until he was 3.5 years old and becuase of his cleft pallet he was esentialy deaf, learning only from visual clues. His teacher at school uses pictures to go with almost everything or signs. For my visual kids, I have them do new vocabulary with picture cards where they illustrate the concept and hang it in the locker or on the wall. There is also a great Leap Frog DVD that has the vowels song and explains how they are the glue holding the word together. Trust me, you will ALL have that one in your head for a while.
You are right, teaching is hard, but it is worth every second of it. Remember too, that even when you fall flat on your face you are still moving forward.
Cindy,
I am so sorry to hear how hard things are right now. Sometimes it seems like no matter how hard we work our kids still struggles.
I do think there is something to being institutionalized at such a young age, for so long. Little brains were simply not meant to be raised in such an environment.
I think of all the other times things have been so hard for you guys (and an specifically thinking about Joshie's RAD) and how your hard work eventually paid off, even when others told you it wouldn't. Keep letting us (and everyone else) support you so you can give your kids what they need. Take care of yourself. You guys WILL make progress. It may look different than the other kids but you and your kids will find a functional way to cope.
Cindy,
I am so sorry to hear how hard things are right now. Sometimes it seems like no matter how hard we work our kids still struggles.
I do think there is something to being institutionalized at such a young age, for so long. Little brains were simply not meant to be raised in such an environment.
I think of all the other times things have been so hard for you guys (and an specifically thinking about Joshie's RAD) and how your hard work eventually paid off, even when others told you it wouldn't. Keep letting us (and everyone else) support you so you can give your kids what they need. Take care of yourself. You guys WILL make progress. It may look different than the other kids but you and your kids will find a functional way to cope.
What tugged most at my heart was Kenny's response to writing vowels--fails, fails, fails--without consciously knowing that was what he was writing. How deeply ingrained is his image of himself.
I will put this in thought and prayer rather than offering my too shallow first thoughts.
Love to each of you,
Lael
Matthew is hilarious! My dad used to tell us all the time that we should go to dental school but no one would. Now my daughter (also a cleft kid going the expander/braces/bone graft route) is thinking being an orthodontist might be her calling :)
I'm telling her optometrist. You don't have all the years and expense of medical school, but you can still be your own boss. Wish I'd realized that 30 yrs ago.
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