If you are a family member to a special needs individual you will know how important it is to be an advocate, to speak out for those who can’t or aren’t being heard. I have always been someone who wanted to keep the peace and who wants to get along with everyone. I used to worry what everyone thought of me. That is one gift that parenting children with Fetal Alcohol Spectrum Disorder (FASD) has done for me. I no longer care what people think of me. It is more important that they hear my plea. That they hear how important it is to learn of the dangers of drinking alcohol of ANY sort of ANY amount while you are pregnant or could be pregnant. I want them to know that it is not evil people or only people struggling with alcoholism who can have children with FASD…it is anyone who drinks alcohol while pregnant. I want them to hear that my children are wonderful…they may not always act it or behave the best but that is because they struggle to understand and to fit in at times.
I have learned that I have to speak up a lot. I have to try to educate even the people who don’t want to hear it or don’t believe it. I want to have this world see through my eyes for one day or through one of my children’s eyes for even an hour. If only they could understand what an incredible difference it would make if they attempted to understand exactly what it is like to be afflicted with FASD. To live with people who try so hard and always feel they fall short. To understand that mothers have to feel guilty as we always say this disorder is 100% preventable but in todays world is that true??? Really? We still refuse to see this disability. We refuse to acknowledge it in the DSM or in our court rooms. We belittle it in the media. We refuse to really look at alcoholism and its effects on people. So we sling the mud but we don’t advocate or try to realize that in speaking this over and over that it is 100% preventable how we alienate those women who are seeking help and then feel only blame.
Some days I feel it is only a dream to make a difference and yet I still am never going to give up. If I advocate and no one listens, well at least I know I tried. So I guess I will keep talking and hoping that some day someone hears that it matters. We all have to be outspoken and keep on saying it over and over. The world will hear us if all of our voices begin to be raised together.