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.
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| 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?
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| 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 |
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.....
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