But in parenting a kid with a diagnosis you hadn’t exactly longed for, coming unraveled can be a bumpy part of the road you’re on. Sometimes, just like our kids, we go through a developmental phase of chaos and disintegration before we consolidate new skills. I didn’t enjoy it, but I don’t think I could have skipped that step. It was an important part of my developmental trajectory.
Having three children with high-functioning autism requires daily structure on my part. I am an organizational freak to a fault, but even I love me some “organized chaos” from time to time. My kids, however, aren’t so fond of not knowing what’s coming up or what’s going on. So I made them this scheduling area by the front door to not only keep them in the loop, but make it easy enough for me to not feel committed to some intricate details that I usually give up on after a week.
I knew I was pregnant the moment I conceived. Call it a woman’s intuition or a case of mother-knows-best, but I knew. As the weeks went on and I could finally take a pregnancy test and receive reliable results, my partner Brian and I stared at the giant plus sign and I said, “I told you so.” As things progressed, I also knew I was having another boy. So when I got additional news about our son, I was shocked that I didn’t already know…
I’ll never forget the moment I realized I didn’t get to hold my baby right after his birth like I was “supposed” to. It wasn’t when you would think, but instead it happened several hours later when I sat alone in my half of a shared hospital room and listened to the woman next to me coo at her baby. All of a sudden it hit me: I didn’t get to do that, and I didn’t know when I would.
Although I’ve had a disability since I was four years old (that we know of anyway), I was mainstreamed at all times. In my family, “disability” was something reserved for people who used wheelchairs. Saying I tried to “pass” and fit in among the non-deaf, non-disabled is like saying the Pope is Catholic. When I found out my daughter would be born with Down syndrome, my world crumbled.
My daughter is growing up with parents who have a strong judgement-free policy, but we don’t have the ability to introduce her to every type of person in the world. How are you explaining differences (physical, mental, racial, etc.) to your children?