Author vs. Reader

How can it be the end of June already. School here just got out barely 3 weeks ago and Josh is in week 1.5 of summer school---well, ok, ESY ( or extended school year which is the fancy name that kids in special ed get to describe their "extra fun" version of summer school, which trust me is not all that extra fun, but I digress) and between my post school year debate coaching duties at the national speech and debate tournament (shout out to my AWESOME debaters), surprisingly interesting  professional development work and just trying to get into the swing of summer, I'm amazed that I'm already at the end of the first third of my time away from school. 

In the middle of that all, we keep plugging away at the reading thing and that makes Mr. Josh alternately resigned and annoyed with his mother. All to often I hear the "But wh-hyyyyyyyy???????"  issued from my charming child's lips. While I longed at 3 to hear anything from him that sounded remotely like a word, at almost 13 I'm not a fan of the whiny teenager. Take what you wish for, though, I guess. Ha! 

Letter writing practice rates a C-----

We are now at 7 letters for Josh in our quest to get letter/sound correspondence this summer. He has short /a/ and short /o/  and soft and hard /g/. I was surprised by the soft /g/ sound since I didn't have to teach that, he just knew it. That's 90% accuracy or better on 3 trials over 5 opportunities in both naming the letter and independently producing the sound. He can do the /k/ sound for /c/ at 60% accuracy but his naming of the letter is inconsistent across trials. The same is true for /d/. He continues to name them both "e". With /m/, he independently calls it /w/ and says the sound is the name. We have practiced the tactile piece of feeling your lips vibrate against each  other to produce the mmmmmm sound and I've tried various visualizations with him about the vibration but he has such a hard time letting go of the name he has learned. I just introduced /l/ and he can name it at 90% accuracy off the bat. The sound production though, not so much. Right now the name and sound are the same, but given the short time we have been working at it, I think we can change that pretty easily.

As with everything else, it's the transfer effect that Josh struggles with so very much. Part of OG is dictating words, and while he tries, he struggles. I model the word, we practice it together, he says the word and blends it on his own, but I'm never sure how much sticks. I think we have it and then a night like tonight happens where we  start out strong and then about half way through all the words are written backwards and from left to right. Dyslexia strikes again. I am not sure what he was doing, but he was rating each word with a number to describe how difficult it was. Apparently the higher the number, the worse it was..... as you can see, there was no love in Wordville tonight. 

The bigger the number, the harder it was.....

Yet, through all that, I did get him to read one Bella and Rosie book to me. Of course, he chose to read the level A book so it was super easy, but he could do it on his own. Hey, reading is reading, right? 

Who doesn't love them some Bella and Rosie, right? 

But then, at the end, he brings me this project he's been working on and wanted me to take dictation. This is the part where my mama heart swells with pride and alternately breaks into a thousand pieces all over again. He is writing a story and even though I have a long list of issues with his teachers from last year and their less than inspired approach to his reading needs in school, one thing they did encourage him to do was to write and they happily scribed for him when they could understand what he was saying. So, he has this wonderful story from inside his head that he is telling the world and he owns it. He is so, so proud of this adventure that his hero (the name is a surprise to be revealed soon) will be taking on a planet that seems an awful lot like some kind of post apocalyptic world where people need to build things (cue the hours we have spent playing Fallout on the iPad) but as author and illustrator he is finding his voice, and using his voice and that means he is powerful and he has a story to tell. He may be misusing some connecting words in his sentences, but my little man is showing me that he has a rich vocabulary when he independently uses words like dimension, machinery and ancient artifacts correctly and in context. 

The title of this masterpiece...Ancient Keepers and Dragons

Page 2..Check out that Castle!

Page 3...The Cliffhanger.....

I watch him sit in the chair, drawing another picture to go along with the next part of this wonderful tale and I find myself returning to the question that has rattled around in my mind for years, and will continue to keep me awake for the foreseeable future: how is it that there is no one who can tell me how I can unlock the obvious creativity, thoughtfulness, higher order and abstract thinking skills that I know are begging to blossom in my child. Why is it that in one of the best schools in the state I live in, the best that they can offer my son is a multi-categorical special education classroom where he will be left behind and his potential will be wasted because he doesn't fit neatly inside their little box of what is or is not within their power to appropriately educate? Why do I feel so very helpless to help him, and I am an educated parent who works within the very system that is failing my child? Pretty words and platitudes don't mean a whole lot. I have given up on the system since their only desire is to do the bare minimum for him until he's 21. The only people who really, truly care long term are his father and myself, since we are the ones responsible for him. Right now, I am feeling as though I need that superhero from his book to come and rescue me because I know I need some answers on how to fix this broken system. Maybe someday I'll be lucky enough to have Josh guide me there. 

Back at it Again

May 3, 2017--,

Contrary to popular opinion,no one has died and no tragedy has befallen our household. Life just got busy, I got a new job, Josh transitioned to 6th grade, we got to experience all the joys that middle school with a 16p kiddo entails, coaching debate and speech took up a lot of time, life with a high school freshman and junior balanced out every other moment of our day so blogging about reading was not exactly the first thing on my mind, or agenda. Do I feel guilty? Sort of, but such is the life of every other parent on the face of the planet, in some form or another so what can I say...reality is what reality is.

I will save my long list of frustrations with Josh and his reading program at school for another day when I feel better able to capture my words in a more productive format. Suffice it to say, I don't feel like he has made much real progress from where he was last May. So, this mama decided, again, to try and beat the odds and do something at home so consider this the reboot of "Let's figure out how to help Josh figure out how to read"

My trusty Orton Gillingham Manual

So far, we've been doing Orton Gillingham, Josh style, for about 3 weeks an average of 4-5 days a week. I'm happy to say that he is at 100% mastery of the short /a/ and short /o/ sounds. He's at about 85% mastery of the sound of /d/ and about 75% mastery of the soft /c/ sound. He is still intermittent with naming the letters /c/ and /d/ consistently but hey, I'll take what I can get.


We have also added /g/ and /m/. The interesting thing is that he is at 95% mastery for naming /g/ but his sound for /g/ is the /j/ as in gem. He will also say the voiced /g/ as in gum but I wonder why his go to sound is the secondary sound for /g/ and not the primary.  regardless, it's one less sound to learn later. /M/ he wants to call /w/ all the time. (all hail dyslexia) so that one will be a struggle to unlearn and relearn, but we'll keep trying.

As with anything in teaching, you have to monitor and adjust your methods to where the student is at. Josh is so NOT a flashcard kind of kiddo. In OG, one of the main components of the drill section is to practice connecting the letter and sound through flashcards. We have done away with the flashcards for now and are using the letter tiles I bought many moons ago.They serve a similar purpose and are much more tactile (and colorful) for my tactile learner. I also use them to blend the sounds together instead of using the cards to blend the sounds since Josh can manipulate them and I think as we get to things like red words (words that don't follow phonetic spelling rules) I can use the red letters to practice those words with him, and maybe even use different colors to represent the different word chunks (/-ing/ and such). Time will tell...

Word tiles to the rescue

I have also started him on the dictation and finger tapping part of the spelling component of the OG protocol. This part is so tough for him, and its the part I struggle with the most since I have no good answer for where to go to help him. Part of the 16p diagnosis is that his auditory processing has a very slight, yet significant delay. What this means is that he misses part of the spoken word. Think of it this way...when we learned the letter /d/, we learned that the name for the letter  started with our tongue touching the back of our teeth to get the "duh" sound and then morphing into the "eeeee" sound at the end of the name. That's how we differentiate the name of /d/ from /c/ which starts with a "sssss" sound and morphs into an "eeee" sound. In Josh's mind he was taught the letter sound names at a conversational rate so the letter names for /b/, /c/, /d/, /e/, /g/ and a few more letters all have the name /e/ to him because that all he heard when he learned them. He never heard the beginning sound of the name--he only heard the end. That's a problem when people try to ask you to write the letter /b/ and you write the letter /e/ because you think they are the same thing since that's what you have heard/been taught . It makes life really hard to spell and read. Little man has a long hill to climb to unlearn these wrong letter names, figure out how to match the right letters and sounds and then relearn the right letter names to go with the right letter sounds. Will we get there? I don't know. Will school help us? Probably not since they don't have the support or perspective to understand what it is he needs to learn how to read so it falls to me.

Spelling what he hears is hard! 

Yeah, I'm not sure what this means but it
meant something to my budding author!   

I can't promise to keep this blog up religiously (obviously) but I will try to share as I can since I do think that his journey has merit and maybe there is another little person out there who may be struggling just like Josh. Maybe someday that person's mom or dad will find this blog and glean something useful out of it. I hope so because then maybe it will make this long, hard, frustrating journey seem worthwhile. And little man, my fondest hope and prayer is that someday you will find these posts and be able to read them, on your own and know that your mama tried. It was imperfect and I wasn't as consistent and dedicated as I wanted to be but I tried because you are worth every moment that I worried and fretted and got angry at a system that is not designed for you. I have to believe that some day you will be able to pick up a book and enjoy being able to read so you find the pleasure of getting lost in an adventure that happens not on a screen but inside your head.

Elements of a successful lesson: Sand, the dictation book and mama's coffee! 

Stubborn, and proud of it.

Day 11-14

Stubborn--I've been called that a few times.

Ok, In the interest of full disclosure, I know that given a worthy cause, I can become something of an intractable force. and I try to make sure that whatever cause I'm championing is successful in the end. In this instance, I think that Joshua comes by his stubborn personality quite honestly. The last few days have been full of finding every excuse in the book for why it is hard to connect letters and sounds. My favorite observation of Josh's was that when reminded he could learn how tommplay his new video game quickly and successfully, he told me it was because it was "self taught".

Ha Ha! Really, what 6th grader tries to cash in on learning video games by advocating for their "self-taught" advantages?

Silly boy. This is not my first go around on the stubborn child ride and to bad for you literacy isn't something that can be "self-taught". Guess you are just stuck with me. :)

In terms of our work, we remain in the two steps forward, one step back universe. On the plus side, we haven't had tears for the past 4 days. We also have figured out that Josh knows the short /a/ an short /o/ sound. At this point, I am willing to add another 2 sounds to the list. I'll be honest, it makes me a bit nervous since he still struggles with being consistent with /c/, /d/, and /g/. On the other hand, he needs to feel like there is progress so I'll take what I can get.

This is the part of the process that I knew we would face, but it's the part that is tapping me the hardest....what is the trick to internalizing the connection between a specific letter ane a specific sound? I think the heavy repetition of the OG process is making some progress, since the time it takes for him to remember the appropriate letter and sound connection has decreased from when we started. But, he still needs that first push. That's why (I think) he looks at my face to make that connection.

The other piece I am seeing is the letter reversal when spelling words. If he sees the letters (like letter magnets or an alphabet sheet), he can identify the right letters for the word, and the vowel is typically placed in the correct spot. However, the 1st and last letter are reversed. When he hears the word for the second time, he can usually get it. That gives me hope. In the short term, though, it is still frustrating for him and it's hard to hear the same insecurities being voiced by him.

No, little one, you are not brain damaged, your memory is not a black hole, you don't have memory problems....but you sure are good at finding reasons to avoid this work. I know it's hard and I know it "gives you a headache", but I also know that the gift of literacy is something that is worth more than all the pain and effort it is taking us in getting there. Good thing I am a bigger, unmovable object than you are since I think it's going to take a whole lot of not moving to help get us where we need to be in the end.

Fear

Days 7-10

The house is quiet, now. A little while ago it was loud with tears, frustration, sad words and fea.r

I don't like fear.

Fear reminds me that it exists because hope is lost. Fear exists because of past failure. Fear happens when we have tried something before and it hasn't worked out and we have felt something be quashed in our hearts, and we don't want to feel that way again.

My adult eyes tell me that fear can be healthy and it exists as part of the warning systems in our brains to protect ourselves from danger.

But how do I tell my 12 year old that he shouldn't fea learning to read?

How do I help him understand that reading is a code of sounds and symbols and that all we are doing is working to match the symbol and the sound so he can look at symbols on a page, or a screen, or a sign and he can break the code?

We have been trying to do that for the last few days, and right now, I'm feeling afraid.

I am afraid that I will not be able to help him past his fear and his lack of confidence.

I am afraid that he has committed the message that there is something wrong with him, as a person, in his heart and I won't be able to convince him to change that message.

I am afraid that there is no one else out there who will be able to do that either and I don't know who to ask for help, or where to turn.
----------------------------------------------------------

Backing up. We have been working over the last few days on learning sounds with the Lindamood Bell LiPS system. Objectively, I can see that it is a reasonable, researched, understandable approach to helping people focus on the motor part of making sounds (knowing how the tongue, teeth, lips, etc. move and feel when making certain sounds). I was so very hopeful that with all the years of speech therapy that Josh has completed, this approach would tie into the schema he already has in his head and the light bulbs would start going off.

Refer to the top of this post to see how well this experiment has gone.

Breaking the learning down into smaller parts didn't seem to help. Over-exaggerating the lip motions didn't really seem to do anything, bribing with Pokemon cards didn't inspire more willingness to try again and the more we worked, the more frustrated he became. As usual, once the frustration hit, the learning stopped.

That means we had to stop for the day.

Feeling my defeat in the moment, I asked him which way made more sense to his brain----practicing sounds "the card way" (the OG approach) or "the magnet way" (LiPS).

He said "the card way".

So, that's where we will start tomorrow. Back to the beginning, but we will add a new sound. Maybe, just maybe I can find a way to combine these two systems to help the light go off behind his eyes so he can truly see that there is nothing to fear with these symbols and letters. Then, with practice, the code will make sense to him and soon we can find a way to break it, together.

Back in the Saddle Again

Day 5-6

It's always hard to get back into routine, whether it is the teacher getting back into the swing of school time (as opposed to summer time) or a certain (now) 12 year old who is still recovering from a week of "Boy Scout Camp Time".

Alas, mom's plan of the day prevailed as we are getting back into the swing of things and  it has been a challenge. In spite of that, it has also been instructive in seeing what has "stuck" in the Josh brain, and what hasn't.

The encouraging thing is that when we reviewed the sounds the first time--before Josh could really think about them--he had all four letter/sound correspondence RIGHT! (Cue sound of angel choir)! I gave him a big high five, knuckles and 2 Pokemon cards.

From Google Images

What Josh looks like when he starts to doubt.

 From Google Images

I'm thinking...Hey, success! This OG approach is the way to go! However, my happiness bubble was dashed. Apparently my reaction was a bit of overkill since his accuracy decreased as we continued to practice. The same habits I saw before he left for camp came back with a vengeance. I saw the doubt cloud his eyes, the hesitation in creating the sound, the looking to my face for the verbal or facial cue to create the sound and most frustrating of all...the negative self-talk about his ability to unlock the world of letter/sound correspondence. That look of defeat is what sucks the very soul out of me.  While we were able to finish the lesson and I grabbed the next sound (/g/) to introduce, I was still stuck on the fact that my perky boy has zero confidence in his ability and his doubt overwhelms what his brain clearly knows.

What BOTH of us need to remember

. From Google Images

Cue the mommy guilt. How could I have not known this? How could I have let it go on for so long? Aren't I supposed to know these signs and advocate for him?

So, I had my moment, made myself some coffee and thought about what to do next. I pondered how I could change the OG approach to be more of an errorless learning environment to try and change the thought process he has by eliminating the "failure" factor.

Then I looked across the dining room and saw the Lindamood Bell LiPS kit that came while he was gone. This approach is another phonics approach to learning to read, but has the starting point as defining and recognizing the sounds of the language first, then attaching the letter symbol to them. This is the approach Jen, Josh's Speech Therapist, suggested to me. Her thought is that since Josh already has the learning pattern in his brain of copying speech sounds, starting with the sound and moving to the letter might be a better approach. As I thought about it, and reflected to the fact that the symbol/sound approach is tapping into Josh's "doubt" thought process, I figured, why not? Tonight will be me grabbing a glass of wine, cracking open the case and seeing if there's a way to meld the OG and the Lindamood Bell approaches together, or if I can figure out the Lindamood Bell approach fast enough to change up the game plan and find a way to break the cycle of doubt so Josh can finally find a way to trust his instincts and finally break through the code of language.

Well, that and plan for a 12 year old slumber party for Saturday night. However, that is a whole separate adventure!

What I'd rather be thinking about! From Google Images

If a butterfly flaps its wings in Africa.....

Day 2-4

One constant in my life as a the parent of a child with a rare genetic condition is that the minute you think you know something, or that you feel as though life has reached a point of balance, even for a moment, the proverbial butterfly flaps its wings somewhere and your life starts down a whole new direction. That image is the best way for me to describe our last few days in our road to reading.

From Google Images

First..the Good:

Even after 3 actual days of practice, there are baby steps of progress. While not an overnight success, Josh's percentage of accuracy on naming and producing the short vowel sound of /a/ and /o/ have increased. Yeah Josh and yeah for the makers of Pokemon cards since reward for a job well done and outright bribery for participating in "Project Learn to Read" equal more Pokemon cards in Josh's ever expanding collection. 

I know, I know---extrinsic reward for an expected action are not the preferred model for teaching a new skill, but sometimes a girl's gotta do what a girl's gotta do, right? 

Josh's favorite Pokemon. From Google Images

Additionally, the routine of the Orton Gillingham lesson plan works so well for Josh since he is figuring out what to expect. We still are not perfect in lesson delivery, but it's getting better and best of all---the 45 minutes of torture on day 1 were decreased to 25 minutes of reluctant endurance on day 3 so I count that as a win. 

Next, the Bad:

The realization that Josh has a LOT of bad habits that frame his experience with reading and subsequently, frame his definition of himself as a reader and as a learner. These are the moments that break a mom's heart. 

Day 2 we sat down for Reading Time (I really need a better name for that) and we are coasting along with the sound cards for letter/sound correspondence. We are on the third or fourth time through and Josh informs me that he can't tell me the name or sound of /c/ because he has "brain damage".

WHAT? 

Time out from letters, let's explore this idea. So, through the tears we have a conversation about how no one here has brain damage, but we all have quirks which cause our brains to function in different ways. I explain to Josh that at times the message that goes from his eyes to his brain to his mouth gets mixed up and it takes him a little longer to think about which sound and letter go together. Simplistic? Perhaps, but I wasn't prepared to have an in-depth explanation of dyslexia, auditory processing speeds and the importance of letter-sound correspondence as they relate to the process of learning to read, so I did the best I could. 

However, that led me to the realization that my child believes he is brain damaged. He believes that he is somehow defective because he can't do something which he thinks nearly every other kid he knows can do. He thinks he is shut out of the club of readers because of something he did wrong. When I tell him that he is WRONG and that he isn't damaged in some way, he gives me that ever popular adolescent look that says, "Yeah, right mom. You can tell me that but I know you are just saying it."

I know a losing battle when I see one. Today, I called a truce on the "brain damage" front, but you can be sure I will return to that battle one day soon. 

After this little moment, we get back on track and as we get to the blending and dictation portion of the lesson, I realize two other fundamental problems. First, Josh doesn't look at the letters when he is "reading". He watches my mouth as I say the sound and he copies me. Good for him to develop a strategy to comply with the request of the person trying to work with him on reading; bad on the people who work with him for either a) not noticing that he is really only following the verbal cues he is being given or b) knowing that he is doing this and not trying to correct it, or at least telling us that he isn't really reading, but rather creating expected sound by memorizing the mouth formations of the words he is supposed to know. Either way, he isn't attaching meaning to the symbols we call words so all this "reading" he is doing really isn't reading...it is memorizing. 

Second, he is writing backwards. This is the one that gets me the most. In 6 years of actual schooling (after early childhood) Josh has become a master copier, but a not so great writer. What he's doing is listening to a consonant-vowel-consonant (CVC) word. He hears the word but when he goes to write it, he starts at the end of the word, and writes it backwards. Let's say the word is cod. He will write the letter /d/ in the third position, the letter /o/ in the second position and them look at me and try to guess what the first letter was since it has been, relatively speaking, a long time since he heard that first letter sound. 

Now, I am not an expert in literacy, but I do have some common sense. To me this screams dyslexia. However, in 6 years of school we have NEVER been told by a teacher this is something we might want to look in to. When Josh has come home to practice his spelling words, he always writes them left to right in the correct order. When he writes his name, it is always in the correct order. So, being the curious person I am, I try to figure out why this is happening. After talking to Josh and trying out some copying practice, my working hypothesis is that Josh has figured out how to copy words put in front of him in the typical left to right progression. However, left to his own devices, he writes everything backwards. 

from Google Images

Now it makes sense to me why the very first person to use the word dyslexia with us was the child psychologist we took Josh to in February since he was re-doing a comprehensive re-evaluation of Josh's skills so we had something objective to compare to the special ed re-eval that was done in October. The person who is taking to time to look at Josh as a whole person or whole student is able to see that the whole system isn't working together. The education professionals who break up their day into discrete times of specific instruction don't have the time to see the whole child and are being reactive in their attempts to help Josh be successful in school. They don't have the opportunity to be proactive. Is this ok with me? Absolutely not. Do I understand how it has occurred? Sadly, yes, since I too live in the education world of today is more about schedules, tests, scores and trying to do too much with too little and trying to get all students to fit inside the box of what is defined as "acceptable progress".

Finally, the Ugly:

My mind feels like it is on over drive. Simultaneously I am amazed at the power of my son's brain to try to find ways to cope with school when the information he is taking in make no sense to his brain, in awe of the amount of work his working memory is doing all the time, angry that I send him to school with people who I believe do care for him but who are missing gigantic red flags that something isn't working, betrayed that the people and process that I trusted to help my child are more interested in giving up on reading and  "accommodating" him when I'm just starting over with him and there seems to be some progress---if he would just be taught in a way which works for his brain--regardless of the "protocols that the district has put into place", and so deeply sad that he has formed an opinion about himself as a person which will take a very, very long time--if ever--to change.

We didn't choose to be here, but at least we are in this together! 

From Google Images

In the end, I am ever so thankful for the support system I have cobbled together around me. I was able to rant and rave at the other mom's at speech therapy who journey through a similar world that we do and who don't have answers, but just get it. I was able to bounce my thoughts and concerns off Josh's private speech therapist, who has been with us for more years than I want to count, but who is able to help me connect the dots so I have a new direction to go and I was able to talk to my husband who reminds me that there is more to be gained by taking the honey approach with the special ed coordinators at school so hopefully we can come to some sort of understanding about how we needs to all be on the same page so we can achieve the end goal of helping Josh to find his way to being able to read. 

I just wonder which direction we will go next when the next butterfly flaps its wings.....