Dear friends and family,
We visited Brody for the first time in a month yesterday......As we approached the school, I was both anxious and excited. We had a PCIP meeting for the first 45 minutes or so and then Brody came in to see us. He walked and stopped at the door for just a second and then went and stood in the corner facing away from us. His behavior therapist said that was surprising but not to take it personal. After a few minutes he turned around with the biggest grin on his face and smiled beautifully at us as he was signing SOUP. We all got tickled as that was what we predicted he would do. He had is I-pad but gave it up when we went to the gym to ride a bicycle. He rode for a while and then asked his aide to ride while he watched. We observed two different aides with Brody yesterday and they were both wonderful.
We followed him to his behavior therapy teachers office watched as he sat down to use the restroom. It was amazing. Still no I-pad and then after he voided he got his I-pad and sat for 5 more minutes. We then went back to the gym and rode the bike some more and that is where we told him by. He acknowledged a little and then we noticed later that he just sat down next to the wall where we left him. I like to think that he was happy that we didn't take him with us. He seems so happy there.
I am happy for him. Sweet but sad moments of life......
Thursday, October 1, 2015
Friday, September 4, 2015
Tuesday, September 1, 2015
Dear friends and family,
We are going to keep this road hot. It is a beautiful day The Lord has made, we will rejoice and be glad in it. Thank you for all your prayers and support. Brody looked very happy. They started potty training today!
Up and at it early. We let Brody sleep in our bed last night. He "asked" and since it was his last night here, we obliged. Sweet moments but at 2:30 he was up wide awake like a kid anticipating the first day of school. I think he knows. He had a nervous stomach about 4:30 and hadn't eaten much supper or any breakfast yet.
We leave the house at 7:30 to go get the extra iPad my friend Laney gave me. I think I got all the movies downloaded last night. I think........
It should take about an hour and a half to drive to the school in Piedmont called The Learning Tree. We have an intake at 10:00 this morning. Ian and Atlee are going with us and are excited about seeing the school. We saw his house Sunday in Hokes Bluff. He will be living with two other boys who are excited for him to come. One asked if they could be friends and the other wants him to go to walmart with them.
The first thing Atlee wants to do afterward is to go "into" a restaurant and sit down and eat. We never get to do that with Brody anymore. Ian has bigger dreams of Disney World. Me, I want sleep. Bubba just wants to go fishing.
I have been diagnosed with vigorous achalasia, a rare incurable swallowing disorder and I have another procedure tomorrow for diagnosing. I failed the first two tests and this is the third to get an accurate diagnosis. I am happy that Bubba gets to go with me this time. Thanks to my mom and Cindy that went the other times.
Off to get a shower and to start the next book in the series of The Griffin Adventures......please say a prayer for us today.
Tuesday, August 18, 2015
Sunday, July 19, 2015
In March of 2005, we brought home our 22-month old son Brody who had known Autism for the first time. He weighed 20 pounds and wore 6-month old clothing. He couldn't hold his head up and had never been fed any solid food. His hair just about all fell out and he started his life in America with Pediasure. After three months, he learned to walk with Striderite shoes. Brody had acid burns on his back from urine and scars on his rectum from insufficient diaper changes. Knowing he had autism, we immediately sought help with Vanderbilt Children's Hospital in Nashville, TN. He was diagnosed with Fragile X, Autism, ADHD, SPD, hearing loss and vision loss. Bubba and I started the Fragile X Association of Tennessee and there began out journey of advocating for Brody Cesar Griffin. We have had so many opportunities to make a difference and we have tried them all. By far the best has been love. All the therapies in the world can't make up for love and family and friends. We have long wanted Brody to be anything but invisible but for the last 10 months, we have all been broken and invisible. As Brody is transcending into puberty, our journey has been very difficult. We had to take a seat out of the car so he couldn't grab us while driving if we had stopped the car or had gone a different direction. We have bungy corded the refrigerator because of his desire to over eat. We have replaced at least 50 pair of headphones and 8 iPads. We have gone through three loads of his laundry a day. I have been pulled out of bed by my hair. Bubba's glasses have been broken too many times to mention. We have been isolated to our house and from our friends. We love Brody with all our hearts. Even though it is challenging, it is all worth it. A beautiful life he is giving us full of compassion, grace and patience. Our journey continues........
Thursday, July 9, 2015
Well, Brody's time clock is off and instead of 5:30, he is waking up at 3:30. We are changing diapers every hour because he eats ALL the time. What an adventure we live. We are in somewhat of survival mode. He loves his iPad and won't wait until it charges so we are in constant motion of swapping them out. We are on stay cation until Sunday and I am going to enjoy every minute of it. We got Internet at home this week and my friend Gwen gave the kids a computer. They are so excited!!!!