Tuesday, August 18, 2015

Residential placement for Brody

Well, the journey has hit a "hurry up and wait" spot. Please keep our family and Brody in your prayers. 

Sunday, July 19, 2015

The Adventure continues....Fragile X Day 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

Up at 3:30

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!!!!

Tuesday, June 16, 2015

Saturday, June 6, 2015

Three great days.....

We have changed Brody's medicine dose and I think there is a difference. Tonight we were changing his shirt for bed and he took it off. Bubba got another one and he took it off. He led us to his closet and wanted to pick out a shirt. He has NEVER done that. #hewantsachoice #ifhecouldtalk

Thursday, June 4, 2015

It's the little things.....

Brody wanted to try on my flip flops. He has never done that before. He walked around the room. It seemed as though he loved it!

When I step back and think, he only has one pair of shoes. How many do we have? Because he can't talk, we forget he may want a choice of shoes. I beat myself up when I figure things out. You can bet I am going to buy him a pair of flip flops ASAP. Communication is our biggest feat. I think most all of aggression comes from lack of it. We are going to start giving him more choices in more than food and drink. I am so blessed by the little things. I am thanking The Lord for the reminder. 

Monday, June 1, 2015

Brody's summer....

A day in the life of Brody. We met his summer teacher's aide today. Her name is Judy Rhea. We are looking forward to a great year.