Sunday, January 13, 2013
I know how you feel!
This blog entry is almost like a reply to a friend/family that can understand what I and every other mom that has a son with fragile x goes through. She and I have more in common than either of us know and I am sure it is like all mothers the fear of the unknown. Every since Seth's diagnose when he was 2 and half years old I have been scared. I did not want to know what was going to happen I wanted everything to be alright and everybody be normal. Talking him to preschool I could never leave him because I could not trust anyone with him. I stayed with him everyday pregnant with my second child and about 3 months after my second baby was born before I ever let them talk me into leaving Seth there without me. I cried until I could not find any more tears. I went straight to my brothers house 5 minutes away and called the school to see if he was okay. He was happy and that was the beginning of learning to trust teachers and the kids. Then we had to begin kindergarten and the fear starts all over. I never forget the school psychiatrist telling me that he needs to be put on medication before he would ever be able to attend this school. The beginning of my battle are starting all over again. Learning to trust teachers, IEP teams and administrators is one of the hardest things I have ever had to do. I had to battle with the school to even keep him there until he was in the 4th grade when I finally got a self contained classroom room at the school for both of my sons to attend. My next transition was high school. I got really lucky and got a job as a teacher assistant in his classroom and I have been with him the whole 6 years that he has attended. I have watched him grow, and make great friends during this time and now it is time for him to graduate. Once again I am faced with the question what is next? I have looked into to some of the programs at the local community colleges but I am not ready for the real world of all ages of students. The unknown of who will pick on him, I can not, I am not prepared, I am not able to let my baby go out into the world with out me. I have given him more independence, I let him go out all over the campus at school, and work with the custodian with out assistance. But I feel safe knowing that I am on campus with him. I am going to let him graduate, but I am sure that he will just stay and work on the farm with his dad until his brother graduates and then we will start our next adventure. All because I am not ready to let my baby go out into the real world. I pray that God will have mercy on me and not take my life before my children or that he will eventually give me the courage and the trust to let them live with out me.