get off the internet. we went and saw the nurse practitioner (who i love) at our pedi’s office today. joe’s having nose issues. he’s always picking and making his nose bleed…tmi, i know. anyway, in discussing this medical mystery who is my eldest child, the topic of cf came up again today. he had a sweat chloride test this time last year and i dug it out of the ginormous file that relates to his medical mystery, which led to me googling information. how often are sweat tests wrong? how often can one have cf and a negative sweat test (a lot it turns out)? i had put cf in the dark recesses of my addled brain. until today. wondering if i need to insist on more testing. wondering if i need to let it be. wondering. wondering. wondering. i need to get off the dad-gum internet before i diagnose the whole family with a varying list of possible ailments. mine shall be: crazy-as can be brian: well, if you know brian, you can fill in something clever cheech: high colestrol from bacon and cheese joe: too damn smart for his own good e-mail me if you need diagnosing as well. i accept shiner light blonde as payment. or bacon.
Month: April 2012
Lighting it up blue
April is autism awareness month, and with that in mind, I’ve lit my facebook profile up blue. Autism Speaks may not directly fund things that can immediately help my family, they are who the public know. They get the word out. Much like the Susan G. Komen foundation, they raise awareness and that’s a big key for me.
Many with children on the spectrum are divided about Aspergers. Because it is the Autism or family knows, it is what we talk about. It would be wrong of me to speak of the struggles one who has classic autism faces. Autism is this big, beautiful spectrum that encompasses so many wonderful, wonder-filled, inspiring children and adults.
I want to share our “journey” (for lack of better words) to an autism diagnosis.
The eldest child was born two and a half weeks early. He was born with a cleft lip and palate and such an amazing aura that it seemed he were an old man in a babies body.
He always wanted to be held on his terms. He’s never enjoyed “light” touches. As he grew, it was obvious to us his parents he was not your “typical” kid. He began trying to speak at eight months. He knew his alphabet by sight by 12 months as well as alphabet sounds. He was reading sight words by two and much more by three. This amazing boy could focus for HOURS if it was something of his choosing. He never liked looking at us; we figured he was too busy. For he was always busy. By two, daddy and I had our worries. The pediatrician said we were over thinking; he is too verbal (uh, hyperverbal) and too social to be autistic. What she didn’t see were the times it would have been all to easy for our little one to retreat into his own world. Then little brudder came along. I think this connection was so strong, The eldest was compelled to stay present. Oldest brother began “dropping foods” from his already limited diet and meltdowns began. We believed these were symptoms of a food aversion due to his cleft lip and palate. Two years of speech and OT and the boy was eating a limited diet but much more able to manage in his daily life. He entered preschool and seemed to enjoy himself. You can’t really measure social interaction too much by a three year old classroom (except, you can). Looking back, the boy had trouble connecting socially. He didn’t understand facial cues, personal space and why kids didn’t want to sit down and read. Kindergarten was rough. He had an exceptional teacher. He was put in gifted and talented one morning a week. Social problems, meltdowns and sensory issues once again peeked through. First grade. Equally remarkable teacher. Same problems, plus stimming. The boy would be so exhausted by the end of a day, he would be near (or often in) tears by the time we got to the car. We had been avoiding a “label” for the boy. But as his anxiety and troubles became more noticeable, we felt we had to have an assessment. I am so glad that we did. In December, just before Christmas break, we had our first ARD meeting. The boy now had provisions put in place to help him. He receives OT four days a week at school and once a week privately. He knows of his asperger’s. He is at peace with his asperger’s. He is his own advocate. I am proud of him. He has challenges (perhaps i will blog on them later) that could make most grownups want to pull a blanket over their heads, but he doesn’t. He keeps on trucking. I am proud. Our story is that. Ours. As one saying goes, “If you’ve met one person with Autism, you’ve met one person with Autism.”. Just like everyone else in the world, no two people with Autism are alike. With the new prevalence numbers, chances are everyone knows SOMEONE with autism. Remember, “If you’ve met one person with Autism, you’ve met one person with Autism.”