One of the things people know (or think they know) about me is that I can be fearless. From the moment we learned Ballerina and Music Man had Autism back in 2009, I still treated them like Big Brother and acted as though nothing was wrong. As time passed, that philosophy seems to have changed. Is this for their benefit or for mine?
You see, when we first learned they were on the spectrum (we didn’t even get an “official” diagnosis yet), we piled into a car for a 14-hour drive to Disney World just 2 days later. It was a trip we had been planning for months and we weren’t going to let this life-changing news affect our plans. We had already considered the twins’ “quirks” into our day and built our days around what we needed to keep consistent for their routine (meals at specified times, naps (since they were still taking afternoon naps), bedtimes, etc.). And we were introduced to other issues as the trip went on and learned how to adjust what we were doing to accommodate for them (like sitting on the aisle during shows so we could make a quick exit, if necessary). Autism — NAH, these are just our kids. It wasn’t until we came home that we started addressing their issues and started really helping them learn to cope with the day-to-day.
But even through this, our activities didn’t really change — they were just added on to. We still went to weekly playgroups (for all 3 kids). We still kept going to gymnastics classes. We just added in time for their new school or Ballerina’s ABA sessions. Other Autism Parents complimented me saying, “How can you take them to a playground, or to gymnastics?” And my response was always that we do what we have to do — Big Brother needs these things and therefore, so do they. They were still the same kids and the deserved to have the same opportunities.
It has now been nearly 3 years since we took that Disney World trip. It’s now been nearly 3 years of knowing that my children are Autistic. It’s now been nearly 3 years of having my life turned upside down because my view of their future has been tainted by this diagnosis. And somehow, during these 3 years, I became afraid. I still enroll them both in activities so they can experience what their typical peers get to do, but it’s different. With them, I hover. With Big Brother, I encourage him to go and explore, and to potentially make mistakes. I know that he may get hurt (a consequence that I don’t wish for), but I allow that possibility to not disturb me. When we go to the playground for example, Big Brother just goes off and starts playing (he’s nearly 7 now). I stay with Ballerina and my husband stays with Music Man (or vice versa). We don’t let these kids out of our sight for an instant. The twins are now 5. This pattern has been true since Big Brother was 3. Yes, at 3 years old, I would allow my son to run around the playground with minimal supervision. He just had to be able to see me and he would be fine. Somewhere along the line, I did start treating the twins differently then their older brother. And I’ve done this (at least I tell myself) because they are Autistic and Big Brother is not.
Now I am preparing to face the next stage of our Autism Journey — preparing to release them into the public schools for kindergarten which they will enter at the beginning of September. They have made such huge progress and it appears that they will be attending a typical school (but be in a special education class). I know a great deal about the teacher and an Autism Parent couldn’t wish for better. But I worry. I worry that they will get lost in such a school. I question whether they will succeed. I question whether I am pushing them too hard and this program is meeting my goals rather than theirs. In other words, I worry.
The parent that was me 3 years ago wouldn’t be so afraid. The parent that was me before we knew that Autism was NOT “Rain Man” or “Forrest Gump” would have prepared to simply walk down the street with her children for that first day of kindergarten and wish them well.
In many ways, I feel that Autism has made me a better parent. I have come to appreciate the moments and every success that all 3 of my children make. However, it has made me timid. It has, on occasion, made me so nervous that I’m afraid to step out my door to see what the world has in store for us. There are days that I really miss the Mom I was.