autism awareness

If you come to Spencer's this month, you can see the above sign featuring our drink of the month. It is delightful, I must admit! I love it iced best, but it is good hot too.

On April 2nd, we wore blue for World Autism Awareness Day. Owen was supporting his brother as much as he could! Since we live with Autism every day, it is hard to remember what it was like to NOT be aware of it. But I wanted to dedicate a post to the reality of our lives because it is so hard to reflect on it when there's no time left for reflection.

Many of you are aware that we have a busy schedule. Lewis has tons of appointments every week. He attends school from 8-11 a.m. Monday through Thursday. He has 1-3 other therapy appointments/interventions every day after school. Because our focus is a home therapy program (ABA) much of my time is spent preparing for his therapy. I gather materials for Lewis to label or sort, making many of these resources myself or finding them online. I keep up with a data notebook, time sheets for our therapists (so they can get paid through a waiver program) and otherwise research methods to make Lewis' life better.

On rare occasions, I attend support group meetings with other moms/parents of children with ASD or other disabilities. It is amazing to me that we don't sit there sobbing or even whining. These women who deal with this baffling disorder hit it hard and give it their all and still can laugh and help someone else by sharing something that worked for them.

But I have to be honest and say that my heart still breaks when we are around "typical" kids Lewis' age and we see what they are doing, and especially their level of understanding and social awareness. That is emerging as Lewis' major deficit: he is unaware of others, their feelings, their existence sometimes and must be coached to have a 'conversation.' School is a nice break for me and is good for Lewis in many ways, but it is basically a black hole in that we have no idea what happens there from day to day because Lewis can't answer questions about past events.

His strengths are definitely memory and music. He can plunk out any song at will on the piano. He memorizes videos, books, songs and re-lives these kinds of things over and over. He is definitely brilliant. We just have to keep chipping away at his brain to figure out what all is going on in there.

All of this to say.......my main comfort is in knowing that Autism is not eternal. It will burn and fade when Christ returns and Lewis (and countless others) will not be plagued with it any longer. It (like all disease) is a result of the fall, of sin, and while I can't understand why God picked us to go through this, we trust there is a purpose in it. My confession is that most days I worry constantly and feel like I'm fighting against the world for my child. It so often feels like no one gets it and I am all alone. But deep down I know that is not the case. We have so much to be grateful for in the support we have for Lewis. It is not perfect, and every positive has its dark side (and vice versa). There is a lot of work, and many days I long to wake up and do something for ME. To just have a day off. I have forgotten what that's like!

This is not meant to be a woe-is-me post! It is meant to be an honest post.......and unfortunately most days when I see people I am so happy to just be talking to someone about something else that it is easy to say things are okay when there is a much longer answer to how we are really doing. So there it is......autism is not easy! We take great joy in the progress. And there has been tons of progress. There is just constant uncovering of more of the puzzle each day and it can be exhausting. We love Lewis! He is worth it. Hopefully one day he'll be able to help us figure all of it out.