Saturday, July 07, 2007

The face of Dyslexia..and it's the cutest ever!

In early May we learned that our oldest, Sam, was severely dyslexic. The hallmarks of a learning disability are high intelligence and low processing speed/working memory. The discrepancy in Sam's scores are about as wide as the Grand Canyon. His I.Q. is staggeringly high. I actually cried in front of the psychologist when she told us. I never would have believed it. His working memory, his ability to simply keep up and remember the conversation is staggeringly low. Extremely low, almost non-existent. His processing speed is well below average as well. This wide range in scores tells us he is severely dyslexic. Anything concerning language is difficult for him

For the past several weeks I have been grieving. Grieving the difficulty of Sam's future and grieving the tough road I have ahead of me. He will deal with this for the rest of his life. He will be in and out of various therapies for many years to come.

I had to change homeschool co-ops, because ours simply couldn't serve our needs. We joined a homeschool ISP for special needs children. ****special needs....Its hard to swallow that term**** I know it is what we need and already they have been a storehouse of information and comfort, but putting on that label that I for years pushed away is uncomfortable to say the least.

We attended a park day this week with the ISP group and one other family was there. They have 5 children, the oldest of which has Down Syndrome. Even though he was 17, he was Sam and Ethan's favorite. Sam said he really like the big boy with the beard. : )

Despite Sam's obvious challenges I see God's hand on him. He loves to worship, making up songs and dances all the time. A friend told me she observed Sam in children's worship and was greatly moved by his heart for worship. He unabashedly stands in the back of the sanctuary and belts out the worship music. It doesn't bother him in the least that people turn and stare....and usually smile. I see the wisdom of God spill forth from him and that will simply serve him far more than the knowledge the world holds dear.

He paints and draws with uncanny sensitivity and freedom. He is definitely a fine arts kid, which makes his artist mommy and philosopher daddy...happy.

While most 6.5 yr old boys are busy running and careening into objects, if there is a baby or toddler in the room, that is where Sam is. He LOVES small children and is intuitively gentle and loving toward them. Maybe he connects somehow with them. He just seems to know how to speak their language. I cannot wait to see him with our future daughter.

But there are very difficult moments as well. A majority of our conversations go something like "Whose on first, whose on second??" Mostly going nowhere. We have left numerous events, parties, etc with Sam screaming and hitting himself unable to control himself. Frustrated beyond comprehension. Those moments are dark, painful, at times embarrassing and utterly confusing. What do we do?? I simply cannot be patient at all times, in all situations.

I'm coming to grips with this news, but falling more in love with the beautiful complexity of my son.


thank you for sharing about this. It seems like it would be quite overwhelming.

It was a beautiful post, and I appreciated the further insight into you and who you are.
I appreciate it, too, sweet friend. He is such a lovely boy. I've taught a LOT of 6 year olds, and he has a really special spirit in spite of, or maybe even as result of, his struggles. He is precious.

My best friend growing up was severely dyslexic--I think I told you that. She is an artist now in Portland. I will tell you that she DID struggle.....when we were in middle school her mom would tear up at how hard Bonnie had to work--even to play piano, which she loved. The notes would literally appear to move all over the page as she looked at them. She had to use clear lavender colored sheets over anything she was reading--I think to lessen the strain on her eyes. I remember thinking I respected her just about more than anyone I ever met, not because of what she accomplished, which was impressive, but because of what she went through to accomplish it. She is also one of the sweetest, truest friends I ever had.

you and a. are the perfect parents for sweet sam.

love you--
That was indeed very touching to hear. As a teacher, I've been close - not this close! - to families struggling with new diagnoses like these.

On my part, it's always a relief - finally, the kid is going to get the attention and expertise that I didn't have to give him/her - and I know from experience that that sad, confused, frustrated student is going to come bouncing back to me next year with a little bit more excitement and self-confidence. Their caretakers look less frazzled, too.

Not what any mom would hope for. But just ...also, you are going have a lot more tools going forward.

And I know I'm always doing this, but hearing about all of Sam's talents made me smile and reminded me of one of my favorite writers, at Real Live Preacher, who was told a couple years ago at an ADD test,

“Okay, how can I say this? If you were a seven-year-old boy, I would be trying to think of a nice way to tell your parents that you will probably never learn to read.”
wow-I have wondered if Sam will learn to read. I know he will, but there are moments when I really question it. The other day he said "keys, k-e-c-z" I was actually sort of impressed. He's never tried to spell like that before. He can sound out 3 letter words, but it is stressful for him. He moves his whole body in agitation.

This past weekend we had a big talk with Sam and I described his dyslexia as having superpowers. He really liked that obviously. We are trying to be very open with him and to say "yes-you are different, your brain IS different, but look what you CAN do" He gets that. He likes to say that Tree Nuts are his kryptonite. (He is anaphylactic)

Thanks everyone for your sweet words of comfort, I covet them.
Lizard, i've been praying for you since May. Thank you for your post. My first thought is how lucky Sam is to have amazing and understanding parents....seems like he'll achieve so much in such a supportive environment.
wow lizard, when you first mentioned this i thought dyslexia was just related to seeing a few letters up the wrong way. i didn't realise the extent to sam's frustration.
when i look at our five kiwis, at all their quirks and foibles and things which frustrate me, and things that delight me, i realise what a wonderfully supportive environment our home and love is for them, and how beautifully they're growing. and sam will grow up feeling that with you. totally. and you don't have to be The Perfect Mom. it's important for our kiddos to see us processing things too... oh i love your SuperPowers explanation: what a wonderfully positive thing to say.
loads of love.
PS love the new hairdo X
Hello I am a friend of Roxana’s from Waco Texas. My youngest son was diagnosed with Attention Deficit Disorder in the 1st grade. We tried behavioral modifications but they were not successful. I walked in class one day to check on him and he was climbing on the table making a ladder with several chairs…while the teacher was trying to teach!! At home he would eat while walking around the table. I know a lot of people are against medicating their kids but in our case it absolutely necessary and it has worked. He is still on the lowest dose. Without it I do not think he would have ever learned a thing!! The next year…the 1st grade AGAIN he was diagnosed with Dyslexia. The school had a great program provide by the Shriners. After a year of being pulled out of regular class to go to Dyslexia class he missed out on his core classes and he fell behind academically. In the 3rd grade we had tested for Special Ed. The Special Ed classification made it possible for him to receive one on one teaching so he could get caught up in his core classes. It also spared him from the dreaded TAKS test that we have here in Texas. In the 3rd grade a student MUST pass the reading TAKS test to promote to the 4th grade but my son was barley reading on a first grade level. On the 28th of this month my son will start the 8th grade. He still dislikes reading but he is reading on a high 7th grade level. This summer we encourage him to read his “gamming” magazines to keep him reading. Since most kids with ADD can hyper focus on things they enjoy video and computer games help him tremendously because he has to read!! So I say all of this to offer hope. Listen to your gut and do everything possible to help your little guy succeed. There are a lot of great programs out there!!
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