Tag Archives: SIBLINGS
Less than two years after Anne got married, her husband’s parents called with the news that his sister had a rare brain disorder and he might too. At first, the news changed everything. And then, in a lot of ways, it changed very little. Pete’s sister, Bonnie (not her real name) had been diagnosed with Cadasil, an inherited condition in which blood vessels to the brain become thick and congested. Usually migraines are the first sign that the brain is trying to make due with a reduced blood supply, typically around the age of 30 or 40. Anne’s sister-in-law was 48. Her diagnosis came after a period of train-stopping migraines and an MRI that revealed early brain damage.
For several years after the diagnosis, Peter watched his parents’ world revolve around his brother. Plenty of second-born kids grow up in their older sibling’s shadow, but try having an older brother with autism. Peter had just turned 1 when his parents got word of TJ’s diagnosis. And, as Peter is quick to point out when things don’t go his way, “It’s not fair.” Looking back, his mom, Lauren, agrees. It wasn’t fair that Peter had to sit on the sidelines for several key years so his parents could focus on TJ. As Peter formed his first words, his parents lived in fear that TJ would never do the same. When other kids played at the Gymboree, Peter stayed home so a legion of specialists could play games with TJ.
Lauren started to notice things when her son was about 2 years old. She and TJ were regulars at a playgroup of kids born around the same time. This allowed the moms to compare notes as the kids started to sit up, crawl, and walk. “It was so interesting, just to see all the different kinds of development taking place,” says Lauren. “And TJ was right along with them.” And then his path started to diverge. He would start crying in the middle of playgroup for no reason. Sometimes the cries escalated into screams and Lauren had to scoop him up and get them both home. Then the other kids started forming words, but no words came for TJ “And that’s how I first noticed that he was different and how something might be wrong. That’s how it started for us.”