Here at www.brightbeacon.org there are many families who have had to deal with the idea that “normal” will never be part of their lives. This is usually a process of grieving and acceptance of a different type of life. Some may start the process feeling like they are losing a dream or will be missing something they thought they would always have. This is not easy and we wanted to give some insight as to how families deal with this and that through this grieving process, often families find a new form of “normal” that brings them more joy than they could have imagined. So we thought we would share a discussion that went on between two users on www.brightbeacon.org:
User 1: “When my kids were young, there was a feeling I did not understand. A friend of mine explained it was grieving. I was shocked…at what? She informed me that I was grieving over the loss of having a ‘normal’ child. She also explained to me that it is OK to grieve and that I would probably grieve off and on throughout his life time. I now know what she meant. I have grieved over the fact that he was not invited to birthday parties, he was not included into some games, and he probably will not marry or have my grandchildren. However, I am excited that he lives in his own apartment and goes to a job that he has had for 15 years. I am proud that he goes to bars and plays pool with the rest of the guys, that he has been on a ‘normal’ bowling league and that he has friends that are boys and girls. If anyone would like to talk more about grieving and/or how it has affected your life, I am here.”
User 2: “I did grieve for a long time and it did make me sad when Ryan wasn’t included. I also started to realize he has an innocent life and existence. He doesn’t know backstabbing. He doesn’t know how to lie or cheat. He only understands very simple things like good and bad! I started to feel like he was lucky, in many ways! I know that must sound really weird but now I even feel lucky because of all the beautiful things he has showed me and taught me! The biggest, is to be more child like! Sometimes I like Ryan’s world better. It is simple and pure!”
Another difficult situation is bullying. Children with special needs have the same issues normal kids do but being “different” can amplify these challenges. Bullying of these children is an unfortunate reality that they must face and suffer through. Their parents often find out too late and then have to deal with the ramifications of this sad practice. Here’s a discussion that took place in on of our forums between parents dealing with this very real problem:
User 1: “Sometimes I feel like I have to teach the world about my son. Bullies in school, bullies in the community. Generally I can take it in stride however when it comes to my social son, I need to act. Does anyone else feel this way? What have you done about bullies? I know I have been talking to some about it but how about getting a good conversation about this. OK?”
User 2: “Thanks for opening this up. You have given me great advice in the past and I would love to hear what others have to say about this subject. We have just started dealing with bullies. The teachers haven’t responded to us bringing it to their attention leaving my son feeling helpless and wanting to get his own revenge. I thought that we would have more support in this situation from the school.”
User 3: “I agree! We are having to teach the world and I have had my share of confrontations in public….I used to carry cards that explained Ryan’s condition. This helped a bit but this world will always have bullies and people who point and laugh and roll their eyes. Ryan now has a melt down with the mention of school, because of children who have hurt him in the past. I also fear that because he looks so normal mean people may try to talk to him and if he doesn’t respond they might hurt him. I wish there was easier answers. I was even thinking a special handicapped shirt to tell people in public to be more considerate. Now when I go places I practically announce it, to make sure people are aware of him, right away. We just have to keep putting our heads together and remember that we are not alone! Stay strong! You are fighting for the right things!”
These are both very real issues that parents need to talk about and share in each others’ experiences. Don’t try to face these issues alone. There are others out there just like you that can help and at the very least lend a sympathetic ear. If you have your own experiences, suggestions, failures, or successes to share…please come join the discussion at www.brightbeacon.org.