Because of Kampbell’s diagnosis we knew that having a boy, Max would be at a higher risk of developing autism. When Max was a brand-new baby, I found out about a study through the University of Washington in Seattle for high-risk infants that was being sponsored by Autism Speaks. I called the number to find out more information and was lucky enough to get Max on the list.
The Study required me and Jesse to bring Max to Seattle at 6 months, 1-year, 2-years, and 3-years for an MRI and a thorough behavior assessment. The goal is to study the white gamma in the brains of the high-risk infants and watch for changes as they develop. The researchers are also interested in seeing what happens to the brain if indeed, children do develop autism.
At the end of August we went to Seattle. We were nervous. Max had started doing strange, repetitive behaviors; his social skills had started to regress, and his receptive and expressive language had fallen way behind. We were, however hoping the team of psychologists would convince us we were just paranoid parents and Max was perfectly normal.
We hoped. That’s not what they said.
We were told that Max was behind and the team wanted to review all of his tapes from previous assessments. I got a phone call about a week after we returned home and they told me the team was, in fact, diagnosing Max, and putting him on the autism spectrum.
I sat on the phone with the amazing psychologist and balled my eyes out. I kept saying over and over, “This can’t be happening.”
For the next week or so, I cut everybody out. I hid inside myself and tried to figure a way out of this. I didn’t, and still don’t want to watch another precious baby slip away.
Someone got the paper work wrong in heaven! Or, maybe God doesn’t know me at all.
Jesse and I are still grieving; trying to come to terms with what it’s going to mean, having two boys on the spectrum. Some days are good. I look at Max and feel optimistic. Other days, I go back to being angry; trying to understand why the universe hates me so much.
The truth is, Max has already made a lot more connections than Kamp ever did at this age. We’re hoping he will be high-functioning, and live a much more independent life. It means a lot of hard work for me and Jesse right now, and hopefully the pay-offs will come sooner than later.
I’m determined to get Max through this so that he can blend in – socially. We’re Kamping with Autism, people! Now it’s just Kamping with Autism: To the Max!