I just became a registered nurse, and my ten-year-old son is infant-like, has frequent meltdowns, and cannot stand without support. He is missing a piece of DNA (chromosome 9q22.2) but we are unsure if it made him disabled. He has a diagnosis of severely multiply impaired, paucity of white brain matter, partial agenesis of the corpus callosum, microcephaly, deformities of the ankle and foot, and Autism.
Tuesday, December 7, 2010
Introduction
My son Andy is 18 months old and has developmental delays for unknown reasons. MRI and genetic testing have revealed nothing. They've ruled out things, but given us no answers. The EEG is scheduled for next week. He can sit and play with toys now, but will still fall over sometimes. He scoots around on his back slightly. No crawling or walking yet. No pulling up or talking. He is filled with frustration and irritability. I am filled with worry, anxiety and depression. I take it day by day. He is in an Early Intervention program, and I also take him to private insurance paid therapy visits. No one can understand what I feel or am going through unless they too have a child with some type of special needs. I am fragile and trying to keep it together and its hard. Our daughter is typical/normal. She doesn't have any special needs issues. Andy loves interacting with her, and makes excellent eye contact. He loves all of his cousins and any kids that come around him. We are hoping he will someday be able to lead a normal life, and it is the biggest worry and source of anxiety that we have.
Subscribe to:
Posts (Atom)