We have never allowed our children’s diagnosis to define who they are because they are more than any acronym. While we do know that the brain damage associated with Fetal Alcohol Spectrum Disorder (FASD) does affect our children we do not in any way feel that it is WHO they are. We want them to understand that it is not their fault that things are harder at times so we talk about what FASD is and that while they may have this disorder it does not mean they are incapable. So we try to make sure it is a balance. I know it is important for them to know as it helps them understand things.
The first time we told D he cried as he said you mean I am not bad or stupid? This broke my heart as I could not believe that what he thought was this. So through the years we have talked about it. Not all the time just when he (or the other kids) have questions. It has been a healthy thing or so it seemed. The other night D flipped out on how much he hated me as all I ever said is he is FAS. (Hmmm I sure do not do that). So we ended up on the floor hugging and him sobbing into my blouse. I could not even make out what he began saying other than “stop saying I am FAS! I am a real boy!”
After over a half hour of crying he finally became calm enough to talk. He is now 13 years old and he is noticing that he is different. He feels bad as he feels he does not have any friends. (He really doesn’t have many). He feels it is because I am “making” him FAS. We had to talk a lot about what is a real boy. I think he is very real. I know how much I love him is very real. I asked him if I really made him be FAS? He finally admitted that I do not make him FAS but he hates it and he just needs to be mad at someone. He figured I would do.
I think honestly the hardest thing about FASD is that while it is permanent brain damage only approximately 20 percent are actually truly Mentally handicapped or in medical terms MR. So really most people affected by FASD know they are “different” and it can be absolute hell on their self esteem. I hate this as it just seems another way that people are victimized by FASD. It is so hard as most people look at them and say why cannot you just act your age or why can’t you get it I have told you over and over! I know this is one of the reasons D feels he isn’t a “real” boy is he does not act like other kids his age and he cannot figure out what he is doing wrong. He tries to fit in. Usually by being aggressive or making what he thinks of as a joke (which usually misses the mark by a mile or more). It is so painful to watch him become more and more aware that he is different and feel so much on the outside. I wish that I could figure out a way to help him to feel okay but he doesn’t want to hear this from his mother. He wants to hear it from his peers. This is one that I cannot help or fix. I just have to continue to remind him that to me he is a real boy and one I love with every ounce of my being.