Disability Ghost

Sorry, I haven't blogged in a while. My life has been filled with kids being up all night and taking kids to different places!

There is this thing that hits me out of the middle of no where. It can come at me in the middle of the night, while I am making a huge breakfast for my family, picking up kids from school! On Monday, I got Carpenter's progress report at school. It was from his teacher's and therapists. I was totally upset. Carpenter's report did not come back as good as I had hoped for. I was disappointed, cried, and was upset all day long. At the Meyer Center, Carpenter just doesn't seem to be showing the teachers/therapist his personality. And it upsets me! I want them to see my son, and to love him and his adorable personality. He is not saying much. The fact that some of them thought he was non-verbal really upset me! I just feel like I am doing him a disservice. I currently only have SI in the home. Not many company's have in house therapy anymore. And I am not taking him to therapy outside the MC. I sometimes feel like I am on this journey alone. I bare the burden for the responsibility of Carpenter. I ache about his future!

The disability ghost hits me out of no where. This report has just set me off this week! I can be making some scrambled eggs and I get this overwhelming feeling about Carpenter's future. What will it hold? What will it be like for him? Honestly, I am terrified! I am crying about it now! I thought deciding on preschool was hard, but next is elementary school, but what about high school? I always keep these assaults by the ghost to myself. No one wants to see me cry and may not understand why. I seek comfort but am unable to obtain it because I don't share my concerns.

I am panicking about Carpenter's speech so much. I constantly pray about it! When we read together, or when he is with his therapist/teachers, I can feel the inside of my body urging him to use his words. It gets so frustrating not being able to understand what he is saying to me. I pray that he will talk so much, using words everyone can understand, that I have to tell him to shut-up!

When you meet parents of children with disabilities, there are two powerful phrases: normal and high functioning. Those words can make you cry from lack of or make you happy from your children doing so well! Of course you want your child "high functioning" but what if that is not to be!?! Every parent says these words, is it to make you feel better, so people will not judge your children? Is it to protect them? To rub it in?

I will write something happier later. When I have use of the laptop!