Wednesday, February 23, 2011


Learning comes in all shapes and sizes. You never stop learning. Ever. There are periods in your life when you learn so much in a small period of time. I would say Kindergarten, grad school and the first week as a parent are probably the most intense times in different ways.
In Kindergarten you become literate. Sure you learn about raising your hand to answer a question, playground games and how to behave in a structured school environment but really learning to read is the biggest part. This is something you will use everyday for your entire life. That's a big deal.

Grad school is so different from undergrad. Certainly you learn many things in college on social, emotional and academic levels. In grad school, though, you learn depth, Independence and diligence. You are no longer looking for the next party, cramming for a test or flirting with a classmate. Its more real, you have to make your own path and professors don't babysit you or spoon feed you the answers. And for the first time you are likely living all on your own. Everything depends on what you put into it. Your professors will tell you how terrible your writing is and this hurts but makes you better. You work hard and have to be self motivated in order to finish your program. If you don't put in the effort you will not get the hood and those little letters after your name.

The first week as a parent is surreal. You are ::gasp:: responsible for this helpless little being. Your baby will not survive if you don't take care of his every need. Your body is battered and weak and in pain but you push all of that aside and jump (well, get up as quickly as you can) whenever this new precious life cries. You put your needs to the back burner because you are now consumed with an intense love for the life you and your spouse created. You learn your heart can grow boundlessly, you don't really need much sleep to function and how to swaddle a baby so they don't squirm out.

Throughout your life you continue to learn. Some days you even think you are dumber than the day before but generally you make forward movement. You learn from everything around you and especially from your children. And in some cases FOR your children. I don't mean you research bugs so that your kid can have the best science fair project in the grade (though I'm sure some people do but don't be so naive to think the teachers don't know who is responsible for the work). Sometimes you watch your child grow and struggle and know you have to figure out what is going on in order to help them. That's the type of learning I'm talking about.

I am an unprofessional expert on all sorts of topics pertaining to kids and babies. Preterm labor? Ask me...I know. Once an OB at Labor and Delivery asked me if I had a medical background because I knew what everything was and how to pronouce it. HA! Premature baby treatments in the NICU and developmental delays? Got it. Food allergies...I only wish I didn't know a damn thing about those. Various childhood illnesses ranging from asthma to ear infections to the now infamous 5th Disease. When your child is very young the knowledge base is purely physical. You know how to feed them and tend to their illness. Spot the signs of ear infections and know when surgery is the best option. But, as your child ages then things get complicated, more nuanced. Does that little studder mean your child needs help or will he outgrow it? Are those hysterical fits of rage age appropriate or is there something wrong (sadly it was just a phase you have to endure...though in this instance it would be nice to have a *fix* available!) Are those headaches real or a preschooler copying things he hears you say (those were real and it breaks my heart to know that my 4 year old was getting migraines)? And probably the most striking...why can't your seemingly brilliant child read?

I have had the unfortunate privilege of researching all manner of learning disabilities. Raph is absolutely BRILLIANT. I know I'm his mother and everything thinks their child is special, but he really is. This is the boy who had an entire 40+ page book about dinosaurs memorized word for word when he was 3. For real. He can remember ANYTHING he hears. So imagine my surprise when his Kindergarten teacher called us in for a conference to discuss retaining him. He could not read and she didn't think he was able to move forward into the 1st grade. I knew he struggled with his sight words but I didn't know the extent of his problem...or where he should be.

In a whirlwind of a spring we sought advice from anyone we could find. I just knew in my heart of hearts that repeating kindergarten was not the answer. If Raph couldn't read there was something bigger at play. He was just too smart to not get it. He had been acting out in class and was disruptive at home and unhappy. This was not the same child I knew. After a lot of reading and scrambling I came across a website about Dyslexia. As I read the list of symptoms it was like reading about Raph. And, interestingly enough Mike and I saw much of ourselves in that list, though to a lesser degree. This seemed like a highly probable diagnosis for an all to often undiagnosed condition. As it turns out many adults only discover they are dyslexic when their children are diagnosed. This might help explain why I am practically unintelligible when I read out loud or why I can't spell to save my life. Or why Mike, though very accomplished now, nearly failed 5th grade.

I bought a book about the disorder and bought some children's books about Dyslexia. I read the first one to Raph and his eyes were wide. He looked up at me in absolute wonder, "That sounds just like me!"

We decided to switch him to the public schools where he could get the appropriate level of support and be taught in a manner that worked for him. As soon as we told Raph that he would switch schools and they would teach him differently you could see his body straighten. He was lightened of this heavy burden of frustration and failure. He could breathe again because he knew he wasn't stupid, he just needed to learn differently and with a little extra help. He was not at all upset about leaving his school and looked forward to his new school. His behavior at home and at school did a 180. He was happy, cheery and confident. All this from simply saying, "I understand you are having a hard time but we will help you."

Sometimes just words and a little understanding can turn a child around. I was in awe of him. He was smart enough to know that changing schools, leaving his friends and starting over was ultimately the best thing for him. I think that is a very mature 6 year old.

Over the summer he was tutored by his teacher and had some testing done at the Center for Vision and Learning. I cannot say enough about the doctors and therapists there and they have truly been a blessing. They, firstly, wanted to check his vision to rule out any physical problems. After that they tested him for visual perceptual problems. Turns out what he saw with his eyes got jumbled before it was processed by his brain. The symptoms of visual perceptual problems mimic those of Dyslexia. I asked the doctor about having him tested for Dyslexia but she felt the results wouldn't be accurate unless he got therapy for the visual perceptual problems first. If the therapy was unsuccessful or minimally successful it might be more appropriate to have him evaluated again. We proceeded with therapy once a week with daily activities at home.

After only a month we saw incredible improvement in Raph's ability. In the beginning he would just stare blankly at a grid of b, d, p and q. They all looked the same. He couldn't tell up from down or left from right or keep his place on the page. One exercise we had to put an eye patch over one eye and have him follow a Popsicle stick with the exposed eye. His eye would bounce all over and he could not track the stick. No wonder he couldn't read!

Raph continued his therapy through the summer and fall and made quick progress. His therapists were very impressed by how quickly he mastered the skills. He started his new school and got daily help from a reading specialist. His teacher also works with the kids on their own level and breaks them up into small groups rather than teaching to all of them at once. This mixture of professional interventions has made a world of difference for him. We got a mid term progress report last week. Raph is reading at level G11 and the expected grade level is G12. He is so close to being caught up with his peers. But most importantly, he can read. He can pick up a book and read the words. If he doesn't know the word he can sound it out and use visual clues on the page or remember the context to decide what word makes sense. Not only that but he remembers what he read. His teacher was very impressed by his reading comprehension skills because most kids his age focus so hard on figuring out what the words are that they have no idea what they just read.

Raph is confident, cheerful and comfortable with reading and writing. He has even started writing and illustrating his own books. He says that when he grows up he wants to be an author/illustrator. That's a far cry from the disruptive and dejected boy he was this time last year.

My point in sharing this with you is not necessarily to brag about my son, though I am very proud of him. It is to tell parents to go with your gut. If you think your child might have a learning disability of any kind have him or her tested. That is the greatest gift you can give them. The earlier you catch these problems the easier it will be for them to catch up and enjoy school. If every class was torture for you wouldn't you act out? Wouldn't daily frustrations wear on you until you felt the burden of so much frustration and anxiety weigh you down? It breaks my heart to think back on reviewing sight words with Raph last year. He couldn't SEE the words the right way and we would go over them and over them and he would make no progress. He would cry and refuse to do homework. He would throw fits and mope and lash out for no reason. He was carrying and immense burden that we had no idea was there.

I feel terrible for the pain he must have been feeling but we have worked with him and he is stronger for it. And I know what to look for in my other kids. If Colin struggles with his letters or Heidi needs her finger on the page to keep her spot or they just don't seem to get it, I know how to help them. I will let them know they are not alone and they just need to learn differently. And if Raph plateaus or hits a road block down the road I will pursue the Dyslexia testing. For now the vision therapy and extra help from his reading teacher are enough but he is still very young. As school gets more involved and faster paced more issues may pop up. I have ever the watchful eye on his progress. If he needs more, we will give him more. Children should not suffer a lifetime of failure when there is help available.


hannah said...

What an inspirational story and amazing family effort, Marcella. Good for you for asking questions and searching for the best (rather than the easiest) route in Colin's development. He is surely better off and is a lucky duck to have a fiercely protective, intelligent and loving mom like you. Looking forward to sharing your blog with my friends. xo...

Candice said...

Wow - what a journey, Marcella. Certainly makes me wonder how many kids are diagnosed with something like ADHD and get put on drugs with scary side effects when what they actually have is a learning disability or (worse) are never diagnosed with anything and go through a lifetime of frustration. Good for you guys and for Raph!