Last week, on Thursday, January 6th, Simon was diagnosed with autism. We had been on a waiting list for nearly six months for an appointment and evaluation at Child Development And Rehabilitation Center (CDRC). This is a division of Oregon Health Sciences University with an office at the University of Oregon. During our time at the center we met with a developmental pediatrician, a child psychologist, a speech pathologist, an occupational therapist, and a social worker. After testing (or attempting to test) Simon in a variety of areas the team met together to gather their findings.
Their findings were as follows: Probable Autism Spectrum Disorder with severe language delays, now echoing in Early Intervention supports; affection, engagement, testing performance all pretty much on his terms, did not cooperate with standardized testing except for mild to motor delays, poor direction following; dislikes confinement or hand holding, little awareness of danger, lots of sorting, stacking, lining up, doors need to be closed, transitions difficult, lots of sensory issues, limited imaginative play
Hearing someone tell you that your child has autism is devastating. Even though we had some suspicions, by the time we finally had our appointment scheduled we had ruled it out…or pushed it out of our minds as a possible reason for many of Simon’s delays. There are so many ways he does not seem autistic…and many ways that it is reasonable to understand why he is placed on the spectrum.
Thursday night we took Simon swimming. Everything was the same but everything was completely different at the same time. Our lives are forever altered in that one instant. Chris and I both cried as we fell asleep on Thursday night.
Friday morning I work up, and after dropping Simon off at school, headed to Border’s and bought four books. I have almost finished 2 by this evening. Now I have a hunger for information…for what to do next. How to help Simon…how to arrange therapy…what direction to head.
One of the first things we are doing is putting him on a Gluten (wheat) Free/Casein (dairy) Free diet. To read more specifically why we are implementing this diet you can read the following: An Experiemental Intervention For Autism. From the two books I read this weekend I am convinced that this is something that must be attempted first and foremost – and will occur in conjunction with behavioral and other types of therapies. We hope to be meeting with our Early Intervention connection this next week in order to move towards what is next…in addition to the speech therapy we have already scheduled prior to learning of the diagnosis.
So things will change around here. Pieces of our life will change.
Chris and I are good. We will stand in solidarity with Simon in this new diet. I imagine that my scrapbooking will take a backseat for some time as we journey down this road. There are so many things to be done…things to keep up with…to make sure that he is receiving the best possible care, therapy, and that we are doing everything in our power to initiate a recovery.
There is so much more to say I am sure and more autism links to be added. Thanks for the love that I know you are sending our way…it is so appreciated.