Disability

   I have been thinking more and more about the word disability. What defines a disability? Is Lukas disabled? Isn't that word, when broken down, pretty offensive? I warn you this blog may be all over the place. I don't have the talent of my husband to perfectly articulate my thoughts into writing.

   Imagine it is pioneer days and a family has 5 children. They are educated at home, their social circle consists of close family and nearby neighbors. This is very early America before we shipped "disabled" people off to be institutionalized. The mother and father know they have one child who is different and maybe "just isn't right." I am assuming that a lot of families dealing with a child at this point with special needs just accepted the situation and helped their child to live a meaningful life based on their strengths. Maybe this child excelled at milking the cows so that's what he or she did. Maybe this child fit in perfectly in their family and because life wasn't completely based off of training our children from the youngest age that they must go to class, behave, pass classes that ALL students must pass and go to college to get a good job so they can work 40 hours a week while their children go to school and do the same thing.

  Even with typical people, we are trained to live like sheep. I don't want to bash the school system because I am glad we have it. Lukas will benefit from it by being able to get therapy that we will have limited access to privately. I have friends who are awesome teachers, too. My issue with school, and it was an issue to me when I was younger and IN school, is that it is often not a welcoming place for people who walk to the beat of a different drum. Most children are educated in the public school system. Classes are packed, teachers are stressed and underpaid, and honestly the only way to keep order is to treat kids all the same, teach them the same, etc. It's not the teacher's fault by any means.

   I talked with a friend yesterday who said she was labeled as having a learning disability. My own husband was put in a special class for a year due to comprehension issues. Personally, I can take the SAT and score well above average on verbal, but below average on Math. The girl I talked to is bright, my husband graduated high school early and has always been an amazing writer, and I like to think I am fairly intelligent. Standardized testing is bull. Everyone is supposed to learn exactly the same, have the same type of intelligence, and if a person deviates from this path, there is something "wrong" with them. I don't put weight in IQ tests, either. What a load of crap. Many people with autism excel at one subject, but fail miserably in other areas. Many end up being labeled "mentally retarded." They may be able to program computers, write their own computer programs, but because they are below average at other subjects, are "cognitively impaired." Personally, I don't think it's the person with autism's problem. It's the rest of the world not accepting difference and expecting us all to be carbon copies of one another. "All in all, you're just another brick in the wall."

   Lukas is going to exit early intervention at age 3 and start going to the local elementary school on Tuesday and Thursday in a special needs classroom. He will get his therapy there and will still go to his regular preschool on Monday, Wednesday and Friday. The bad part to me is that we have to go through all the autism testing again because the school system is separate from early intervention. As you know, I HATE HATE HATE this testing with a passion. I hate people examining my child, pointing out everything about him that is "different" or everything that is viewed as a "deficit." I hate how this testing ignores strengths, or even if there is a section on the "standardized" form that has a space for strengths, it is left blank.

  See, I know Lukas is different. I know our life is different then parents of typical children. Do I feel like I have a disabled child? Not until the standardized testing is pulled out and people are whispering, "He doesn't seem to hear..." or "He has an unusual gait" or "Does he always wander around like that?" It takes every bit of power I have within me not to start crying and then throw some furniture across the room. I know these people are here to help. I know they will help him to work on things that will be helpful to his development, but there is a part of me that wants to snatch up my child, walk out the door, and let us live in our own little world where Lukas is just Lukas. A place where Lukas isn't autistic or disabled and he is just my quirky kid that I love and accept as he is. I always feel fine about where we are until the outsiders are let in. Day to day, we are happy. Right now as I type, Lukas is happily watching Thomas and riding his little bike around echoing what he hears on the TV. I'm at peace. I let him skip school again. I am sick and he slept in late. Even when he starts the new school, we will have these days. Lukas is a kid. He's not even 3. He needs that time to be home with his mom and just be a kid. This is the sunny side of autism.