Yesterday, I went to coffee with a new group of moms. It was an effort for me to go, but I knew that I needed to get out and meet other people rather than stay home in my comfy bubble doing geneology and facebook land. This group was new to me from facebook, specifically for cargivers to get out. What I found is that it is mostly other ASD moms like me. I am so glad that I went. So in going, I had to introduce myself to this group, which reminded me of the “journey”.

So back to my “heart warriors”. We went back to the cardiologist for a 6 week followup post surgery for my daughter, and the doctor said, well, since he is here, let’s have a listen to [my son]. When they were done of appointment/tests (which consists of an echocardiogram, ECG and then review with doctor), the doctors were stunned. My son’s numbers were worse than my daughter’s had been at the time of her surgery. They needed to keep him in and do surgery on him first thing in the morning.

I remember sitting in some “quiet room” bawling my eyes out. Luckily, my son only needed an angioplasty and was discharged right from the ICU in less than a week. And he has never needed surgery since.

So we moved from a 3 story, 3 bedroom townhouse to a large house in another town. It wasn’t until my daughter was 3 that we finally decided something might be going on. She was non-verbal and had outbursts where she would smash her head on the floors, walls, etc. I was stressed as it was about having twins. These being my first and only children. I was/do living on the opposite coast from my family and had never been around my nieces while they were growing up, so I had no context for “normal”. In the end, we got our daughter assessed and diagnosed for autism when she was 4 years old. The diagnosis came on the first day of school, so I didn’t send her to pre-school with her brother. We got him diagnosed 7 months later. Because the waitlist had seemed so long, we got him assessed privately and then began the task of getting a home ABA therapy team. We already had a home team for our daughter and so it was easy to just add him to the schedule. But it was like a whole new world, new terminology, new everything to learn.

My once non-verbal daughter is now a chatterbox and very artsy. Her brother is more focused on Roblox at the moment, plants vs. zombies, and of course, his first love, Thomas & Friends.