aware it's may

April was autism awareness month, and I meant to dedicate a post to this fun topic, but got behind somehow. If you have been reading our blog then you are already somewhat aware of what autism is, but may not realize how it effects us personally. Throughout the last year as we went through the process of getting Lewis diagnosed and then coping with the aftermath, it has been difficult to put into words what it has been like for us really. I am not a super "feelings" oriented person, and in general try to put a happy face on life because we are focusing so much attention on helping Lewis succeed and smiling seems to help make that happen (at least, he likes it!). Still, in the name of "awareness" I'm going to attempt to be open, at least briefly.

Preparing for Lewis' evaluation in Louisville last fall, I was reading a lot of books about autism. They were so helpful, and most were very hopeful about kids making great gains and progress. I was sure that once we got our diagnosis that we would be on our way to "healing" Lewis. And while he has made amazing progress through therapy, sensory integration and the like, we are constantly reminded that he is not like other kids. He is special, and intelligent, and he brings incredible joy to our hearts. Seeing him happy is my favorite hobby. But on the flip side, when his speech regresses, or when I'm talking to him and he can't calm down to understand that what he wants is right around the corner, or when we're trying to get him to see that there is huge, beautiful rainbow RIGHT THERE in the sky, or to notice we are pointing at a big lion on the other side of the fence at the zoo....it brings great sadness.

When we are around other children who are able to speak and pretend and make up their own stories, we are sad that our little boy is missing out on those things. I remember so much joy in my childhood from birthdays and Christmas and the make believe world I spent so much time in that it hurts to know Lewis can't experience those things right now. So with every great day or event, there is an element of pain that is paired alongside it. It is the dull ache of unfulfilled hopes and dreams...........not for anything spectacular or extraordinary...but instead for the simple, the very ordinary that so many people unfortunately take for granted.

Each day is filled with stress that we are not doing enough, questions of our adequacy for the job, frustration with the bureaucracy that seems to make things harder, and pure exhaustion from trying to balance it all. And it is a lonely place. There are a few people who kind of understand what this is like, but even less who can really relate to where we are right now. Lewis is different, and as a result, we have become different too, and we don't fit in as easily as we once did.

Today we had Lewis' first IEP meeting at his preschool for the fall. Everyone was really nice. We got to meet the speech therapist, the OT, and lots of other school people and they seem to be a good team of people. They even agreed to do some ABA with Lewis each day. I felt good about how things went, but it has been a huge source of anxiety for me leading up to today and I have wished that we could spend next year playing instead of thinking about school. When they asked about letting Lewis ride the bus, I had to put my foot down! Putting my baby on a bus is where I draw the line. That is probably the part he would like the best, but he'll have to wait.

This has been a season of a bitter reality, that life is going to be hard for a while. There is not a quick and easy solution to this situation. We are grateful to the Lord for providing for us, and for guiding us in helping Lewis. At the same time I have struggled with the feeling of abandonment, knowing that God could easily heal Lewis by removing the scales from his eyes that are keeping him from seeing so much in life, but He has withheld that blessing for now. My faith knows there's no where else to go, but the fellowship is not as sweet of late, while my need is so much greater.

Our greatest encouragement has come through the church, and we are grateful for our piece of it here in Bowling Green. We need to be around others who are struggling, even though the struggles are different, there are commonalities there that when shared seem to make the load lighter somehow. It is such a nice break to think about other people's problems and lives in general! Thanks for sharing your stories with us, and enduring this somber read. Please understand that we want to be able to spend more time with many of you, but have few opportunities to really socialize in this weird season of our lives. Please hang in there with us.