Relief, Sadness, and Hope: Our journey to diagnosing the learning delays of our youngest son

This is going to be the hardest post to write, as I delve into all of what is going on with The Adventurer, so please bear with me. It might get long. It might get ugly. But it will be honest; as honest as I can make it. This is our journey from letting The Adventurer take his own time learning, to seeking an evaluation, to finding out about, and dealing with, a diagnosis of dyslexia (and a little more). 

My youngest son will turn 8 in just over a month, and yet he cannot read. He has not ever read a single word in his life. And if I believe the experts, we are working towards a chance that he will read, not a certainty that he will.  I do not believe the experts; there is no doubt in my mind, as his mom, He Will Read. I refuse to believe otherwise, and I refuse to give up until he achieves fluent literacy. Period.

He has written words. He can write his name, at least the part that makes up his nickname, with relative ease and almost 100% consistency. Pretend his name is Richard (it's not) and we call him Rick (we don't); he can generally write the Rick part. Or pretend his name is Alexander, and we call him Alex. You get the idea. Most days, he writes it perfectly.  Some days, even at almost eight years old, even though he's actually been writing his name for a few years now, he still gets a letter backwards. And he still forgets what that last letter is actually called. I look forward to the day when he remembers, when him not getting it is a distant memory.

He cannot spell. Yet.  For one entire weekend, he could. At least the words dog, cat, mom, and dad. The Chemist created a game where one word was bad, one word was good, and The Adventurer had to spell the right word to avoid being tickled. The Adventurer thought this was hilarious and would spell the wrong word, on purpose, just to get The Chemist to chase him around pretend-threatening to tickle him.

Picture it --- The Adventurer chanting "d-o-g, d-o-g, d-o-g...." over and over again, as a taunt. The Chemist asking him "What? What did you spell???" and The Adventurer, giggling with glee, "I spelled dog!! ha ha ha ha ha!!" d-o-g, d-o-g...." Nearer and nearer would come The Chemist, hands out in that pre-tickle wiggle, "What??? what's the word???"  and finally The Adventurer would squeal in delight, "C-A-T!! I said C-A-T daddy!!!!" "Cat, C-A-T!!!!!!" and that round of the game would be over for a while.  Over and over again, for a whole weekend, they did this.

The following weekend, The Chemist started it up again. Except The Adventurer did not remember how to spell any of the words. They started over, but the game lost some of its fun as The Chemist felt frustrated that The Adventurer wasn't able to retain a simple word like dog, or cat, or even dad or mom; words he had been singing, chanting, spelling, and even writing just one week before. That was only about 6 months ago, and perhaps the main incident that spurred me to seek out evaluation and outside help for our boy. 

Before you gasp in shock that it took me until he was seven & a half years old to get help, let me explain. No, let me sum up. He was premature, nine weeks early. He had services from Early Childhood Intervention (ECI) for the first year, every week. Then he dropped to once a month visits until, as he grew older but his speech did not progress,  the weekly visits resumed. He remained in ECI Speech Therapy until he was two & a half, when we moved to S. America.

He sat up late; he crawled late; he walked late (though he was a climber well before a walker). He talked very late. He nursed for a very long time and made the switch to solid foods very, very slowly. We offered, he tasted, but solid food was not a nutrition-providing part of his diet for a very long time. We saw a nutritionist about it, who declared him healthy thanks to the nursing and said just keep doing what we were doing.  He potty trained extra late.  So, I thought for a long time that maybe he was just operating on his time table; maybe it wasn't that he couldn't get it, but that he wasn't ready. I paused, back tracked, resumed our lessons, again and again and again.

Not until the D-O-G/C-A-T game, the initial success and then the colossal failure a week later, did I admit that something was going on; the information we were feeding him, no matter what method we tried, was.not.staying. His brain, simply put, was not holding on to things. 

As I write this I think of an analogy --- it was, and is, very much like severe reflux that keeps a child's body from retaining the nutrients of food fed. Something is wrong, the food does not stay down, the child fails to gain weight and grow. The parents are doing everything right, the child wants to eat, wants to grow, but something is medically wrong with his body so that it doesn't work. New methods and treatments have to be tried.  It is not a failure on the part of the parents, nor a disobedience issue on the part of the child; it is a medical, biological, physiological issue.

In August of 2012, when The Adventurer was 7.5 years old, we sought help. We had an outside evaluation done, which lasted all day long. I told him it would be a little like Secret Agent testing, so that he would cooperate and understand there was no right, no wrong; with no fear of failure, he was happy to play along. He laughed and giggled and charmed the Educational Psychologist (Edu-Psych) into laughing as well, all through the day of evaluations.

In September, we received the report from the Edu-Psych. We learned, to our great relief and our deep sadness, that something (actually, a lot of somethings) in The Adventurer's brain, the way his brain works, keeps him from learning. Relief that it was not our fault. Relief that it wasn't for lack of trying, it wasn't that I was a bad teacher, it wasn't that I wasn't spending enough time on trying to teach him.  Relief that this thing had a name (or names) and therefore could be tackled, met head on, hopefully overcome.  Sadness that there is, and ever will be, that word "hopefully" in there. We hope he will learn to read. We hope he will learn to overcome this. The Edu-Psych who evaluated him used words like "this will give him the best chance at learning to read...." as though there is also a chance that he won't.  I struggle with that. I refuse to settle for "hopefully."  My boy will learn to read. He will learn to cope with all he faces, he will succeed. Because we will not let him fail. 

I would be lying if I said he will one day magically be cured and never have difficulties again; he will, if I am being honest, have to work harder at school and learning for the rest of his life. He will have to work harder at anything that involves listening, at all. For the rest of his life. Conversations. Following directions. Sifting through background noise to hear, really hear, the things in the foreground that he's supposed to pay attention to. Learning to tune out the background noise without also shutting out the foreground noise. And then learning to make sense of what he hears. But that does not mean he won't succeed in life; I have every hope and belief that he will. He will succeed. 

No, that is not all due to the dyslexia. What I have just described is due to one of the other problems, perhaps the most significant: a suspected Auditory Processing Disorder (CAPD, or just APD). His is compounded by the dyslexia as well. Regular CAPD is referred to as "when the brain can't hear." It is very like a hearing problem, except it takes place in the brain rather than in the ears. The sound comes in, the ears send the signal, but the brain doesn't get it; the connection is bad.  Add his particular type of dyslexia (dysphoneidetic, aka, both auditory & visual) on top of that and even the stuff that comes through, even the stuff that registers in his brain, is sometimes garbled. Overlay on top of all of that, he also suffers from similar issues with visual processing, though not to the same degree. And then throw in the visual side of his dyslexia, that what he sees ends up garbled as well.....and, well, the experts say that hopefully he will learn to read. Hopefully  he will learn to overcome all of this. Hopefully.  The experts do not know my boy the way I do; he is stubborn, determined, in ways they have not seen. He will learn to read. He will learn to live life to the fullest despite these challenges. Because one thing my boy does not do, ever, is give up. And one thing we will not do, as his parents, is let him (give up or fail). 

That is the key here. We do have hope. We have a plan, and thanks to our Edu-Psych and a few helpful friends, I feel equipped to help my boy. Period.

More on that in the next post; you can click through now (post that has the plan) or wait and read it tomorrow when I link up with Grateful for Grace.