Berger Family Story - Dan Speaks
Dan: We both wanted to have another child. I know we should have considered genetic counseling and I sure wish we had. Our families were happy for us, we were happy, and we even took a trip by ourselves to Virginia. Then two months before the baby's due date, Karin had a lot of pain and bleeding and she was put to bed, but the baby came anyway. Michael was very small. His skull size was small, and tests showed that he had the same condition as Charlie.
At least we are pleased because Michael is sleeping and eating much better than Charlie did. So we decided to let friends from our church watch Michael, instead of starting an intervention program for him. We have not been ready. We see Michael as a pleasant baby, who can on occasion lift his head up and (sort of) sit with support, even though his head lags and his energy level is so low that he would sleep most of the time if you let him. He looks at us, and sort of follows us with his eyes. He can stare at objects that are really shiny, and he startles really hard when there is a loud noise. His crying habits and his sleeping times are much more normal than Charlie's, but he doesn't push a cloth off his face, and he doesn't reach and grasp at objects you hold out for him.
Charlie and Michael's temperaments are very different. Charlie is more persistent and attentive, but medically fragile. Charlie is a pretty heavy toddler since he is tube fed now. Michael is easier to feed, so maybe he will not need the gavage feeding tube. Both boys are susceptible to infection, lung, and breathing problems. Michael's temperament is sunnier and more mellow, but he is also more passive. I think we can't wait any longer for an early intervention program.
The Early Intervention Specialist
Checklist for Promoting Shared Responsibility and Collaboration
Inclusion and Normal Environments
Principles for Development of Family-Centered Outcomes
Process of Collaborative Consultation (Goal Setting)
