Day 45

After I put Julia to bed I went to Ryan's room to kiss him good night. As I approached his door I could hear him crying. I walked inside and asked him what was wrong. He was pointing to his stuffed animals on his toy chest; he looked sad and worried. Apparently Phil had forgotten to put the stuffed animals in his bed before he left the room. I grabbed them for Ryan and placed them in his bed in the precise places he wanted them. He looked content.

Ryan is all about routines. Every night he goes to sleep with his music playing, his Cars night light on, and at least three stuffed animals in bed with him. His Mickey Mouse sleeps to the left of him, his Blues Clues dog sleeps to his right, and his little brown bear stays somewhere under his face or arm. We've learned these routines and memorized them and when he decides to change them, we relearn them. It is stressful, but not learning them leads to even more stress.

These are the routines and parental jobs that nobody else sees so it can be difficult for them to understand why Ryan does certain things, and even more difficult to understand why Phil and I make some of the decisions that we make. We've had four years of practice getting to know Ryan's strengths and challenges. We've learned from our mistakes, and we are still learning. Every decision we make happens after we first think "How will this affect Ryan?"

Over the years we've been judged and labeled as the "strict parents" in our family and amongst our friends. We're usually the ones to leave parties early so not to miss a bedtime, and not let our kids eat certain foods or participate in certain activities.

We've also been judged by strangers. We've endured the whisperings at restaurants when we've needed to let Ryan watch the portable DVD to keep occupied to avoid a meltdown waiting for his food. What the other diners don't realize is that while typical children can easily pass the time coloring, being forced to color for 20 minutes is torture for a child with fine motor difficulties. We've received plenty of annoyed and disapproving glances from onlookers while in line at the supermarket. What the other customers don't realize is that waiting in line or waiting a turn can be difficult for a child on the spectrum. While these things are embarrassing for us, they have also made us strong. We've become protective of our children and their feelings, maybe overprotective at times, but I prefer it that way. I'd like to think that this experience has also taught us to think first before we judge others.

Last summer we took our kids to Disneyland while out in California visiting family. We guessed the kids would last about 3-4 hours and we would be on our way. You can imagine our surprise when we were able to stay at the park for about 8 hours! We were also able to go on many rides, including the ones with a 30 minute or longer wait. This is because we had a deal going with Ryan. While in line he was allowed to keep his "binkie" in his mouth, but had to give it back to us when we got on the ride. (Ryan had just turned three and was having difficulty giving up the binkie, especially after seeing his sister with one.) During one of the line waits, I saw a young woman staring at Ryan. She had a look of disgust on her face. She turned to the guy with her and whispered in his ear. I could tell he was looking around for Ryan. When he couldn't find him, she pointed towards Ryan. They both had a little chuckle. It was like a knife through my heart that someone was laughing at my son. I didn't say anything to them, and at times regret my decision.

The next time you see someone having a difficult interaction with their child, before you say to yourself, "That mother/father has no idea how to be a parent", please have some compassion and give them the benefit of the doubt. Don't stare, don't laugh, and definitely don't point your finger!

DC