Developmental Testing at Kennedy Krieger Institute
December 2009 – Tristan just turned three. His spots of bone appear infrequently with his latest area a small cluster on his right thigh. So we are thankful they do not rapidly spread. We just got back from Baltimore after we saw the developmental pediatrician at the Kennedy Krieger Institute. It was a good visit. We did not learn anything more than what we already knew, but at least we now have another person with a brain who can help us in our mission to get Tristan where he needs to be developmentally. After she spent time with us and gave him some initial tests, she said she would like to do the ADOS test for autism.
She is concerned about his social inabilities, his lack of eye contact, and of course his poor speech. She was very nice overall, and she said she will read all the research information out there with regard to Tristan’s Albright disorder. She actually already had some knowledge on Albright Hereditary Osteodystrophy (AHO) or had read up on it right before she saw us. She also stated it is possible he could never talk verbally, and instead use signing or picture forms of communication. We were not surprised by this comment, but we hope that will not be the case for Tristan.
She said she will help us get Tristan into either the county or private language intensive preschool where he can receive more speech therapy, and also be around more children to help with his socialization issues.
This path is extremely frustrating for us and especially for Tristan as he is a very smart young man, but cannot somehow verbalize what he wants and needs, and he is frustrated himself. We will let you all know when we hear back on the ADOS test results for Autism.