I felt that everyone thought I was crazy including doctors. All they saw was a smart kid. He was born with hypotonia and couldn't walk until he was 18 1/2 months old when all other babies in our family walk before they turn one, but he started reading on his own without being taught a year later. We could not get OT or PT because it was as if even his doctors thought he couldn't have too much wrong when he talked like a kid several years older. We had difficulty getting referrals from his primary care physicians.
They almost had me thinking that maybe he was a little lazy and that was why he didn't have as much endurance for physical activities and couldn't write for more than five minutes before complaining that his hands hurt. It was horrible to have people think I was either crazy or lying.
I feel like we are in some never ending episode of "Mystery Diagnosis." Now that he is 14 and needs surgery we are getting a referral to see a geneticist to make sure he doesn't have an underlying genetic disorder that could cause surgery complications. My anxiety is at a very high level.
People finally believe us now but because of what we went through I feel extremely isolated. I can't be around my extended family because of the stress right now, not even for Thanksgiving. I will visit my husband's family instead. I never felt like they doubted me.
