I have tried to write this blog a thousand times but could never really finish. Putting it all out there, makes it all seem too real. And though this isn't a life threatening illness or disability, it has been a difficult journey and I hate that Max has had to deal with it at all. But I've finally seen that 1.) there is a light at the end of our tunnel and 2.) we are not alone!! So here goes.
When our boys started to learn how to speak, Max was pretty slow to utter words. When he did there were a lot of issues with certain sounds. Let's just say we tried to keep him from talking about a "fork" or his favorite train "Percy" in church or around grandparents. If you get my drift...Most of the time, he'd let Porter speak for him. Perks of having a twin.When it came to reading, while Porter sped along, Max struggled. With fingers crossed we decided he was just a late bloomer and one day it would all just click. Low and behold, it did! He started getting more fluid with sight words but it didn't last long. As the demands of second grade increased, his level of frustration skyrocketed, his self esteem nosedived. Along with this, his behavior in class became distracting and difficult to handle. He HATED school, invented reasons and illnesses with the hope of staying home. It was painful to watch.Here's where we start putting all of the pieces together. Starting with his ears... we all know about selective hearing, especially when it comes to kids and men. Am I right? Right... So for quite a while, that's what we thought we were dealing with. But then we put a lack of hearing correctly with an inability to grasp phonics, transposing similar letters - even writing words entirely backwards - and add a dash of pure painful frustration when reading more than a sentence, and we figured we needed to get down to business and figure out what was going on in his awesome little brain.
We were sure that the diagnosis would be a combination of ADHD and Dyslexia. Certain! But the Educational Psychologist who studied Max said ADHD was not his problem. And nope, it wasn't Dyslexia either. She assured us that he is extremely intelligent and has a great capacity for knowledge. But he has major difficulties when it comes to accessing that information. Her diagnosis, Auditory Processing Disorder.
Here's a story my husband put together for a grad school project. This was confirmed by an Audiologist who also discovered that mild hearing loss in one ear was to blame for some of this. (a history of ear infections, two sets of ear tubes are likely to blame for that)And finally a speech therapist offered additional credence to the diagnosis of APD. Then came the task of how to fix it! The suggestions? Private school ... yup small classroom. I know this is what he needed but it wasn't financially feasible and Porter was thriving in his comfort zone at Cordova Elementary so we opted to keep him in his spot for a while and work with the school to make appropriate adjustments for Max. Also suggested, keep him close to the teacher with his good ear facing her and to give specific instructions. Also, Multi-sensory tutoring in conjunction with speech and language therapy tutoring. For the first six months or so this guy was all learning all the time. He had Multi-Sensory Tutoring twice a week, Speech/Hearing Therapy once a week and afterschool reading tutoring once a week. Poor kid was so burned out but it was SO worth it! He made amazing strides in a short time. If you have never heard of Multi-Sensory training, it is amazing. Devised for students with learning disabilities like Dyslexia, essentially it is a way of learning that involves every sense! For example, when working through a new word, he'd spell it out loud, write each letter in the air with his fingers, on the table with his fingers, etc. This way he is hearing it, seeing it and feeling it. Finally, his brain is able to start all of that great information it's been storing in unlabeled file cabinets. That summer, Max participated in the SMILA summer camp. (
www.smilamemphis.org) This was a huge breakthrough! He was fully immersed in this style of teaching for 4 hours a day during the month of June. And by the end of it, he didn't want it to end. I was speechless!! I cried like a baby at those words. The first time in forever Max was excited about learning! And best part, he was so proud of himself. But when we returned to school, attention and focus were still a huge issue. After talking it over with our pediatrician, we decided to try a mild ADHD med. This was no easy decision for us. We were incredibly hesitant to medicate our boy with the fear that we'd lose that Max spark in exchange for a calmer kid in the classroom. We started out really rocky, getting his body used to the side effects, etc. But immediately we all saw a huge difference. Even Max saw it. He liked that he could sit still and focus on his work. He'd get his work done in the amount of time allotted and homework time finally became bearable. And after we adjusted the dosage, we were still able to keep Max! That spark and fun personality, it was all still there!Finally we felt we'd found the combo that worked. But there were still parts of this disorder that we needed to wrap our minds around. I turned to a great resource,
the book, When The Brain Can't Hear. This along with the characteristics that all of the professionals provided us with finally started to make sense. We began to find understanding behind some of his behaviors, his actions... Why Max couldn't remember a word from one sentence to the next, why he sounded out every letter rather than syllables, why he couldn't carry out 2 - 3 step basic directions, why he wouldn't stop a project when it was time to stop. We learned that APD isn't just about listening and reading, it effects how he reacts to certain stimuli, how sensitive his senses are - smell and hearing especially - and it has a lot to do with his focus issues. We have had to develop some coping mechanisms to get us through. We are still a work in progress and Max is still learning and growing. He still has a difficulty distinguishing between similar letters like d, b, p, q... He truly has to process those letters separately all the time. It's no wonder the kid hates reading, I finally realized. It is such a chore!! By the time he gets through a sentence, he's still got to figure out what it meant. Often times its just a long string of words with little meaning and no story.
We spent the summer battling over reading because I was determined to not let him regress and start his fourth grade year playing catch-up as he had in previous years. But thanks to a fresh new teacher with a fun yet structured teaching style, Max said the other day, "I think I might start liking reading!" Yeah, I cried a little. This is an unbelievable feat. The last two years were painful. Especially 2nd grade, torturous is the only way to describe it. It is so hard to watch your child struggle to such a degree especially when you know he's got the knowledge, the information it's all there! And on the other side of the coin, his twin sails through books and breezes into the talented and gifted program. I could go on for days, I waited far to long to talk about this, that's the problem :-) But after Joel posted his video, we got a lot of feedback that made me feel that we aren't crazy and this isn't a made up disorder and while it isn't something that is completely debilitating, it has been and will continue to be challenging in various parts of his development. But for now, we are moving along swimmingly. He continues to make great strides in his tutoring, he's loving 4th grade and has really adjusted to his meds. And his TCAP scores are great! Now, if only we could tackle Porter's math anxiety :-)
