Saturday, May 30, 2015

Diagnosis Day

A while ago, I was asked by one of James clinical staff at his Autism program to write what it felt like when we got the news that James had Autism.  My response follows here...

Diagnosis Day, 12/20/06
I should have known… But I didn’t want to know… he was perfect!  Sweet!  Quiet!  Beautiful!  I should have known… 10 month old babies shouldn’t know where all of the continents on the planet are… But I loved my brilliant little explorer! … 13 month olds are not supposed to lose the sweet words they used to get their favorite treats… But I loved my silent little man!  I should have known… I had dedicated my life since my graduation from college in 1987 to children with Autism.  I had seen all of this before but I was blindsided on 12/20/2006 when the developmental pediatrician looked at me and my husband and uttered the word for the first time in the presence of my beautiful boy.  The word Autism lingered in the air and permeated all available space.  I couldn’t swallow or speak.  I just stared at my son, barely 3, driving his favorite car on the wall and not bothering to see if mommy was okay.  He was James… Just James… He is not Autism but somehow Autism changed form and when James turned to look towards me… I saw it for the first time and in that moment… I knew… And I embraced him… All of him!!!  He is love and loved and yes… he has Autism.  
same day

Tuesday, May 12, 2015

The Power of Karate

James has been taking Karate for just over a year now and to be sure, he has grown immensely over the past year. At the beginning, he was sullen, would often not participate, couldn't tie his belt, was confrontational, was stripped of his belt twice.... Pretty much he was a walking disaster in a white/yellow belt.  Fast forward 12 short months... James was awarded his Purple belt today!  (White, white/yellow, yellow, orange, purple).  James is now disciplined, respectful and cooperative (well most of the time).  And apparently Karate has given him super powers. After his seizure a week or so ago, I was over vigilant in checking on him.  He looked at me and stated, "Mom, I'm fine. You know I have an Orange belt with 5 stripes in Karate."  And then today, when he was picked up at school he came out in a wheelchair. Apparently he hurt his foot and one of his resource teachers said something and all he could remember was he now had some kind of "itus".  After much deliberation, he decided to go to Karate to get his new belt.  He even remembered to limp a little when he felt us watching him, otherwise he was bouncing and happy in his class.  Karate certainly has powers beyond the ordinary!!

Sunday, May 3, 2015

"It was the best of times, it was the worst of times."

We all know that there are good times and bad times in the land of Autism.  There are up and downs.  Moments we want to treasure and relive and moments we want to erase from our memories.  Friday had some of the best times and Saturday, well not so much.
Friday was our family's day to appeal the regional center's decision not to cover the co-pays for James's ABA. We presented a strong case and have succeeded on part of the decision. They will be paying for the services that were rendered during the time we understood that they would be paying.  One point for the Laughter home!  The other piece of it is whether of not James continues to need such an intensive service given his current behavioral needs.  We should hear something by the end of this week.  After the meeting we went to Hometown Buffet, James's favorite restaurant because they make the best soft crust pizza!  James filled his plate with pizza and french fries, a typical meal for my little man.  He saw my husband was eating some orange chicken, another favorite of James's but he likes the one from Costco more.  He took a bite of my husband's and decided that he liked it, so he went to get some.  The orange chicken had sliced green onions on it and I was sure James would wipe them off of spit them out.  He astonished me by actually eating a piece with the forbidden green on it and stated that the ones with the green were the best.  He then stated that maybe he should add vegetables to his diet and he would start with corn.  UMMMM... not really sure how to respond to this except to say to him that there was corn available here and he could try  it.  He did and after a few seconds, spit it out declaring that corn was not going to be on the list!  Okay, things are going back to the normal we are familiar with!
Saturday started out like any other. Early morning shopping, working on the house, trying to pull James away from his wonderful computer Mine-craft game.  We finally succeeded and went out for more errands.  James fell asleep on the way to Costco, weird but it is the weekend and little man is entitled to extra sleep. He woke up when we asked him to get out of the car. Got into Costco and James and I sat at the cafe area and waited for our lunches to arrive.  One bite into his pizza while waiting for his drink to arrive, something happened.  My husband had gone to get the drinks and came back and asked what was going on. I must have been in shock and simply stated, "James is having a seizure." I must have snapped out of it at that point and went into epilepsy mode.  Make sure ... this and it is best if he is ... that.  The seizure was relatively short, about a minute but seemed like it lasted forever.  As James came out of it, he sat back up. During the seizure his head went quickly towards the table, good thing his plate of pizza was there to soften the fall!    IF James had been standing he would have went head first onto the concrete floor in Costco!  Anyway... James reported generally feeling unwell and shaking on the inside after he recovered.  He was as white as a sheet including his lips.  I started to feel better as his color returned. Lots of conversations about seizures and epilepsy.     His sister was contacted via texting and his nanny was also updated. The whole family is a little (by "a little" I mean a freakin' ton!!) freaked out.  James is fine and his neurologist and classroom teacher have been updated. Medication will be increased and he will have an appointment with the neurologist when school lets out in four weeks. Seizure log will be created and follow him to and from school.  It is a whole new way of looking at our little man now. Frequent checks on his status will be conducted while he is in his room.  We call his name every ten minutes or so, if he is quiet, and if he answers, great, if not... we do a walk by.  This is just another step to understanding James. He was diagnosed with Epilepsy when he was four, but seven years later it is a slap in the face reality.

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