John

John is the baby, the one with the most medical challenges and the one who is developmentally the most delayed. All of these contribute to him having very frustrating behaviors. He can pinch, yell and simply sit down and refuse to move. Its hard to love him when he just left a bruise on your arm. Not because you don't love him but because its so hard to understand why he seems to want to hurt you.

The most joyous part of starting this blog now is because its an ongoing documentation of how we are evolving and adapting to John and how he is progressing from being at home with the ones who love him most.

Angie has gone through tremendous changes as she's been home with us in the last five years. She started from a very different place than John but she had behaviors that had sparked a new medication (which sparked my belief that it was time for her to be taken out of the group home.)

John was in the hospital in April and that bout left him with permanent lung damage. Because my mother lost her trust in the group home system for John (just as I had lost it for Angie), she brought John home. That prompted me to move home to help.

Its hard because while Angie can do many things on her own, John cannot. He eats too fast so we have to feed him or watch him carefully or he'll choke. He is very routine oriented and even if he is sleeping, it seems he'll wake up at mealtimes. He has continence issues especially at night.

But these issues are slowly changing. Each night that he is dry its a celebration in our house. Every smile that lights his face gives us a little thrill. I love that feeling. It really makes it worthwhile and encourages us to keep going even when you're so frustrated you want to cry.

Right now we're dealing with his desire to not go to bed. He is tired. He eventually falls asleep but we have to keep his door closed and keep him in his room or he'll stand in the kitchen because he wants food or drink (even though he's eaten and had plenty of water.)

John does talk more than Angie. He can say Mama, Barb, milk, cake, pizza, hamburger, hot dog, cheeseburger (yes food is a major theme!) He is on a lot of medications for behaviors too and I know they encourage his hunger but he's always been obsessed with food.

That's really the whole challenge for all of us - the changes in Angie and John and Mom and I from 20 years ago when we last all lived together. Who are we? Who were we? How do we do it better this time? And how do we help John overcome behaviors that developed while he was away? Stay tuned!