Here is a journal post I wrote on July 11, 2006. This would have been five days before Cara turned three. This would have been a year since we first heard the word "autism" in connection with Cara and six months after her actual diagnosis. I was already feeling the pressure that has followed me ever since.
Not only does Cara live in her own little world, but my world has drastically changed. I live in a different world than those with "normal" children.
I view the future in a totally different manner than I used to. I think I have gotten over my fear of the future, but I still don't like to look at it much. It is so uncertain. Will Cara get to go to Beautiful Savior? What kind of life will Cara have? Will she go out on her own and live a relatively normal life? Or will we be taking care of her for the rest of her life?
I don't even view class plays and such the same way anymore. Every time Josie sings in church, I find myself wondering if Cara will ever do that. I am pretty sure that Josie will someday sing a solo. She loves to sing and perform. But will Cara ever even sing with her Sunday school class? Will I ever get her back to Sunday school?
How do I teach Cara about Jesus? Josie has soaked up Sunday school and Christian day school. Reaching Cara with the Gospel seems to be in my hands (and Rick's). Maybe some day Cara will go to the school at Beautiful Savior, but until then it is up to us. That is so scary! Such a precious need to fill.
Will Cara need braces? How do we get her to eat? Is her nutrition unbalanced (how can it possibly be balanced)? Is nutrition a concern? Is her weight a concern?
Dear Lord, help me through this maze. Get me through one day at a time.
Now it is 16 years later. Cara never did go to Beautiful Savior. We made a couple of attempts to get her to sing with her Sunday school class, but that quickly ended. She had no desire to do that.
Cara has learned about Jesus. Going to church is important to her. She follows along with the service even if she doesn't participate the way everyone else does.
Cara never did need braces.
When I wrote that entry in 2006, we were giving Cara Pediasure because she wasn't eating or wasn't eating much. We did eventually get her to eat a handful of different foods, but all the feeding therapy didn't work. She started eating different foods a few years ago when she started "stealing" other people's food. She is a pick eater at times and other times surprises us with what she is willing to eat.
Cara was anemic for a while and she was borderline underweight, but eventually she gained weight and the anemia went away.
We still don't know what Cara's life is going to look like. She never will live independently, but our goal is to get her into some sort of supported living environment. We hope to get her some sort of supported work as well. She has three years left of high school with her IEP extension. The goal for those three years is to get her as independent as possible and see where she can go.
And my view of the world is still drastically different than most people, and it isn't just because I have an autistic child. I am autistic myself with ADHD. Learning that at this late point in my life has changed my viewpoint so much more now that more things begin to make sense.