My goal for this blog is to share tips and ideas discovered or developed over the past 35 years to enhance the quality of life for my daughter and others like her. My best moments are when I see the beautiful smile on her face that tells me I have succeeded. But then again I don’t really want this to be about us. I want it to be about what works or can work for others facing similar challenges. And perhaps that means you and your family.
Lesson One: Trust Your Instincts –
When Alexis was born in 1978 I was told by the attending pediatrician that she was fine, even though the delivery had been difficult. She was not diagnosed until 9 months later – although I always suspected. But by that time I was used to seeing her as a normal baby with normal baby needs. Besides, I was at that point working towards a Ph. D. in Developmental Psychology so I was more oriented towards meeting her developmental needs than her special needs. An incident which occurred shortly after her diagnosis as blind and “severely developmentally delayed” pushed me even further in that direction.
I went home from that specialist appointment devastated, as anyone would be. However, I quickly began considering our options and exploring available resources in our area to help people like my daughter. Within 2 weeks a ‘developmental specialist’ arrived for an assessment interview to begin preparing a home program for her. It was then that I realized I could not trust the system to provide and would have to seek out at least some of the answers myself. Following is the story that emerged from that first intervention which began a few weeks before Alexis’ first birthday. The story was written several years later.