The role of the physician in early intervention for children with developmental disabilities.

MY daughter Cammie is two and a half years old. Cammie has severe developmental delays in all areas and is cortically visually impaired. She has been involved with early intervention since the time of her discharge from the neonatal intensive care unit (NICU). Cammie entered the NICU after I had an ultrasound that identified intrauterine growth retardation, and I had labor induced. Cammie and I lived in the NICU for two months as she struggled with breathing and feeding issues. She grew slowly and eventually was considered stable enough to transfer to the special care nursery. During this time, I was told that Cammie probably had an unidentified genetic syndrome. Cammie needed a gastric tube (g-tube) to eat and was diagnosed by an early intervention team as having significant developmental delays in all areas. Because of her multiple needs, five different providers from three different agencies visited us at home. Their visits rarely overlapped, though all provided similar things for her. I was totally overwhelmed and discouraged because the providers kept telling me about everything that Cammie should be able to do. Some of the professionals' goals were difficult to live with, such as head control. Cammie was and is very floppy, and the things that the providers did with her have not seemed to help-even though the providers kept the same goals on my Family Service Plan for 18 months. When the providers talked to me about my future with Cammie, they said that they believed Cammie always would receive home services because she became exhausted easily and would not benefit from being with other children. They even told me that Cammie should be home-schooled when she was older. I was devastated because I wanted her to be a child who participated in life and enjoyed the company of other children. At Cammie's annual individualized family service plan (IFSP) meeting this year, my husband and I asked for some different plans. We participated in a project that helped us identify what was important to us as a family. I started to feel more confident about Cammie's care and wanted to get back to doing the things we loved to do before Cammie was born. My husband and I wanted and did place different outcomes on the IFSP. Rather than pieces of behavior, we asked for things that included having Cammie canoe, swim, and shop with us. We also asked if fewer people could visit us, because we believed that Cammie became confused by listening and working with so many people. Most importantly, I needed to return to my nursing job; because of that, Cammie needed to have child care. The group of service providers agreed to this, and we began a different model of early intervention than what we had originally. Rather than focusing on what Cammie cannot do, we are building upon what she likes and what she can do. We now have two early interventionists coming to our house every two weeks. They have been helpful and supportive to me and have developed a different vision for Cammie and for my role in Cammie's plan. Most of the time they help me to figure out how to have Cammie participate in the activities that we value. As a result, Cammie has exceeded my expectations and that of the early interventionists. She is able to go canoeing in a special seat in our canoe. She loves swimming and now can hold up her head when the water touches her chin. She now also shops with me; she sits in a special seat in the grocery cart. I have noticed so many more vocalizations and attempts to move on Cammie's part when we participate in community activities. Now we have an IFSP that is truly our own.