(Political Correctness Disclaimer- I used the word retarded in this post. It is not used in a derogatory way but it is used.)
Last year I learned a lot about expectations. When our youngest son was re-diagnosed from ADHD with an emphasis on the H to a disappointing conclusion that he was actually extremely low functioning my hopes were dashed. I must be dense because it took the Dr explaining in terms that I understood, that our son was just a few IQ points above severely mentally retarded that I understood. You see, I thought he had dodged that bullet.
When he was first diagnosed with Infantile Spasms we were told that 65% of the children who survive this type of seizure end up severely retarded. But he survived the seizures and continued to progress. Many hours of speech and occupational therapy and at the age of 5 he finally started to talk. But he was so uncontrollable, so angry, so hyperactive, so incredibly busy. The Dr's put him on meds to help but even though it made him less hyper he wasn't really more focused and he started to develop harmful habits.
In our world of political correctness, the school used the term developmentally delayed. I thought that meant exactly what it said. I assumed that if we continued to work that he would eventually catch up to his peers. That's what delay means right? Slow? Behind? At one time we thought he would never walk and he did. They said he wouldn't be potty trained but we accomplished that. He was non-verbal and they cautioned us that he might never talk. Now he talks non-stop. So you can understand my confusion with the term developmentally delayed. And now I know why the IEP team at school rolled their eyes at me when they asked what my goal was for my son and I answered that my goal was to help him to be like all the other kids. I was missing vital information.
What I did not know is that today the term developmentally delayed is the same thing as mentally retarded. Apparently the powers that be think this sounds nicer but the problem is that we laypeople don't understand. Seriously if people would have told me 6 or 7 years ago that my son was mentally retarded it would have saved us all from much stress and much grief. You see I grew up around other children who were labeled mentally retarded and I understood that they were wonderful, loving people but they could not learn in the same way that the rest of us did.
So after months of dragging my kicking, hitting, severely distraught child to school in first grade, and after being called many times to come get him from school because he was disruptive, we brought him home for school. After all I had homeschooled my three oldest children so my thinking was that he needed more one on one attention and we just had to find his learning style. After a year and a half I was ready to throw in the towel. This child was so stubborn, refusing to learn, crying, kicking, screaming (I'm surprised the neighbors didn't call the cops) I took him to the pediatrician and she listened to my woes. She also commented that our son was much more mature and behaving so much better than the last time she had seen him,always an encouragement to hear. She complimented both of us on his progress. And she suggested we see a psychiatrist and have him tested, that maybe it would give us some insight.
And that is exactly what we did. That day was eye opening for me. I was allowed to watch the testing from another room and I was astonished at how totally overwhelmed my son became. I could see that he failed miserably. When I heard his answers they seemed so random, nowhere near what was expected of him, but because I had worked with him so much I could understand why he answered what he did. The verdict of the testing was low IQ. In fact the dr said if we could bring him up to the level of a fifth grader that would probably be as good as we could expect.
I did what any mom would do. I went home and cried for a week, maybe two. This news was devastating to me. First I wondered what kind of life will my boy lead? Will he be able to learn to live on his own, to take care of himself? Second I thought what does that mean for us as older parents? Are we going to be able to financially prepare for taking care of him indefinitely.
After I had time to process this new information we had to rethink how we did school. The dr had suggested that the bad behavior may come because our son was so overwhelmed with the work that we were expecting him to do. That maybe we should start from the beginning and take it as slowly as we needed to do. That is exactly what we did and that is where I began to realize how I let expectations drive my life.
This post has gotten very long and I am feeling weary, as if writing about it I have lived it all over again. I will write more on what I have learned about expectations and how they affect my life. Until then I will say good-night.