If you had the ear of the heads of every country in the world and could tell them anything and they would actually listen what would that be? I am sure for some people this would be a very hard decision but I have to say it wouldn’t be for me…not anymore. I know that I would speak of prenatal alcohol exposure and the damage that is Fetal Alcohol Spectrum Disorder. Now I in no way see my children as “damaged” nor do I see my close friend as “damaged”. I do know though that the alcohol has forever harmed them. It has taken many choices away and made them pursuing their dreams and wishes very hard. I look at times at people who are enjoying alcohol and it makes me question so much. I mean really do we need alcohol to enjoy ourselves? If so, why?
I know this is my soapbox and I know that perhaps some people get sick of hearing all about the evils of drinking while pregnant. I just also know that there are still people who do not know or perhaps do not understand that it truly does matter if you choose to drink while you are pregnant. It can literally save a life.
My children are wonderful…they are truly talented in many ways but they also struggle all the time. The thing that hurts me the most is their struggles with their self-esteem. I think what really hurts too is to see my close friends husband trying to be honest with people about his having FASD . By trying to be honest about his need for reminders he has had an awful time trying to get a job. He feels so worthless…he worked his butt off to get through a trade school and now wants to be a part of providing for his family. He is trying to be proud of himself and all his differences but the minute he is there is this immediate judgement. He does need an external brain and cannot manage money or make important decisions on his own but with his wife’s support and guidance they do well. His self-esteem is beginning to very much flag. He hates feeling as though he is a child or treated as less than by other people.
As an adult with FASD I very much watch what works for him as I want to know what supports to use for my children. After his diagnosis (he was not diagnosed until later in life) he felt as though he was treated differently and resented this. I had to laugh at the time as really we all just had more patience with his “eccentricities” than we did before. I struggled with some of his issues before we knew he was FASD and I know so did his family. Really it was watching him with my children that brought it out to both his wife and I. He had the same background as my children having an alcoholic mother and being in foster care due to the chaos at home. When he confronted his mom about his FASD and asked her questions she said that while she had drinking problems it was his father who had given him FASD. It did not help him to accept this diagnosis and himself to have his mother unable to hear what he needed to ask her.
I really wish that the people who seem to think that FASD is some kind of myth or “not that bad” could spend even one day in the shoes of a person who is diagnosed with this or their caregivers. They have no clue what it is like.