About My Son
******This was written about 5 years ago, but it tells my son’s story up through his diagnosis with Asperger’s Syndrome at age 9. He is now almost 14.******
I post quite a bit about The Boy and the challenges he faces. I thought I should gather some information all in one place for those interested in getting a bit of background on The Boy.
I noticed The Boy related to the world a little differently pretty much from the beginning. He slept very little. Very little… even for an infant. At times, sleeping only five or six hours in a 24 hour period. He would cry for what seemed an eternity sometimes. We assumed it was colic. As a first time mom, I had no clue how normal or abnormal his behavior was. Doctors dismissed my concerns with – “It’s colic” “It will pass” “All parents think their babies don’t sleep enough” “Sleep deprivation is part of being a parent”
As a toddler, the lack of sleep continued. Naps were given up well before his second birthday. The “fits” as we called them were frequent and exhausting, for both The Boy and myself. He would cry and scream inconsolably in his room – sometimes for hours. He wouldn’t accept any attempts at comfort, aside from at times, desiring someone to sit in the room with him. He never liked to be cuddled or hugged. He would cringe and recoil at almost any touch – especially if it was not expected. Doctors again dismissed my concerns. He entered preschool and did quite well. The school focused on learning through play, and his teachers were fantastic. Still, there were peculiarities. At the request of his teacher, we had his hearing tested by an audiologist. His hearing was exceptional. Off the charts, actually….as was his vision. He could hear the trash truck, one of his obsessions, blocks away….minutes before anyone else.
As he grew, the issues continued – no sleep, anxiety, sensitivity to sound, light, smell, taste, touch, clothing. Getting The Boy dressed almost always involved tears, as his clothing aversions could change day to day. He had obsessive interests in things, craved repetition and routine.
We chose to keep The Boy in private school, where the class size was small. He entered kindergarten, and did quite well…again, due to a very understanding teacher. First grade was still pretty decent…aside from the homework. Each evening we spent many hours (and many tears) finishing what amounted to 20 minutes of homework. Finally, taking matters into our own hands…and aside from the doctors…we sought private help. The Boy was diagnosed with Sensory Integration Disorder, now called Sensory Processing Disorder. Second grade brought more struggles. Yet, all the while, he managed to keep excellent grades. Third grade brought change. A new school was a poor fit. It was punitive, and academically strenuous. His grades started to slip, and so did his behavior. We had a thorough educational assessment done. It was found that The Boy has dysgraphia as well as severe output and sequencing problems. As the stress caused by the school environment increased, we decided to homeschool. Within a two week period, we had researched the option and pulled him from his school. We started on Thanksgiving break of 2006, and have never looked back.
At age ten, The Boy started suffering from emetophobia. I won’t go into detail here. Click here and here to read more on the emetophobia. We still battle with this daily. As we began visiting the psychologist for the emetophobia, he asked if I would allow him to begin testing The Boy for Asperger’s Syndrome. I agreed immediately, as I had brought AS up to doctors in the past. Through the many weeks of visits, the diagnosis of Asperger’s was confirmed. The diagnosis has been both a relief and a bit sad. You can read some of my thoughts immediately after the diagnosis here and here. The Boy’s diagnosis inevitably lead to my own diagnosis of Asperger’s Syndrome as well.
Despite having an above average IQ, everyday learning is difficult to The Boy. Out of all his challenges, I view the output and sequencing problems as the biggest obstacle. What would it be like to have so much knowledge, but not be able to organize it and express it clearly? Or to read well above grade level, but be unable to retain anything you just read? If you have a couple of minutes, click here and see for yourself. Try your hand at the quick tests developed to illustrate learning with these difficulties. Go on. Try it. It is quite interesting. Choose from attention, math, reading, and writing. The Boy has huge difficulties in all four categories – with the most frustrating being the reading…not able to retain information from what he has read. Most times it feels like trying to put out a wildfire with thimbles full of water….you keep dumping and dumping, but it has no effect.
So as not to end this on a down note, let me also tell you this about The Boy:
He is funny, full of life, passionate, and energetic. He expresses joy so openly and with such fervor, that you can’t help being swept up in it as well. He laughs loudly and from the heart. He can tell you anything you need to know about airplanes. He can jump ramps on his bike like nobody’s business. He never holds a grudge. He is a showman and a stunt man. He is a wiry, jiggly, bean pole that wriggles and bounces and taps and squirms and makes noise until the moment he finally succumbs to sleep. He is a firecracker and a computer… a mixture of effervescence and factoids….sometimes both simultaneously. And I wouldn’t trade him for the world.