Today is FASD Awareness Day. Ninth month. Ninth day! All we ask is go nine months without drinking while pregnant. A friend of mine…like a brother to me…wrote an answer to a post yesterday on Flying with Broken Wings, a site for those with FASD. I asked him if I could repost it on there. He said YES! So R.J. Rormanek…Here is it. I so appreciate you in so many ways. R.J. lives with FASD and is a survivor!
Here he is…talking about living with FASD to someone who has kids with FASD
We are often victims of our own concrete thinking processes, and that might start to explain what they are going through. As you have noted major changes to them have come to symbolize loss (of people, by the sounds of things) and they have come to expect that everyone will leave them. In my own way I too can understand this feeling… I don’t know how common it is with others living with FASD but in my own mind I always know that people will go. I can’t shake that one, I’m afraid… but that IS a part of life and learning to cope with that is very difficult when you don’t fully understand. It has taken me years to learn to accept that while (my brain) doesn’t change like others, they change and move on while I remain the same. I’ve actually taken to calling myself a ‘time traveler’ as in… no matter what year it is I am always the person I was in 1978. I’m not stuck in that time, and I do LEARN things … but my personality has not developed past a certain age. This is the self that speaks to me… a teen age kid. THAT takes some getting used to.
FASD and sexuality? Oh now there is one nasty mix, let me tell you. You see, while Mother Nature did indeed play a terrible trick on us. A few of them. While our brains have issues that we are all aware of our bodies grown like anyone else in a purely physical sense. We are often “cute”… many of the facial characteristics of FASD are found to be attractive to the opposite sex. I don’t know why. But very often we are good looking… and often we don’t age the same either… but that’s a whole other story.
Maybe it’s because we are living closer to our “animal or reptile” brain (the base brain… the one that regulates emotion, impulse control, fight or flight type thing…NOT the “thinking” part of the brain) and THAT can cause us to want to… propagate the species as it were. We can easily relate to the physical feelings of sex and often we have problems in this area with judgement… saying ‘no’, setting limits etc. It doesn’t help that many of us can talk like there’s no problem, making finding a partner not too difficult. If we don’t find a good positive relationship to help us grow and understand sexuality then we are faced with some very scary prospects to be sure.
BUT it doesn’t all have to be this way… and meeting good people can make a huge difference. Knowing that someone cares for US, not just our bodies can make a huge difference… but often we need to learn that sex and love can and often are two different things. Having someone we can talk to is vital… an External Brain.
As we go through life we meet and enlist the help of any of a number of external brains, from parents and caregivers to friends and lovers. While the parents can’t be there always they CAN help enlist people to act as ‘fill in’ external brains while needed. As long as they have that one person (each I would assume) they have someone to “touch base” when faced with new and confusing situations. The people we hang around with can be our life line… or our anchor. If we have good solid people around us we can do amazing things, so I would suggest helping them find someone THEY feel comfortable with who can be that ‘fill in’ person when they need someone.
Adults living with FASD still need External Brains… not to tell them what to do, but to be there and explain “WHY?” to us… since this is often the thing we don’t understand about anything…WHY?
My External Brain is often my moral compass… if I see someone do something and I’m not sure I can ask “was that right? or wrong?” and get the explanation. Sometimes it’s just having a person there to tell us “yes… that’s right or not that’s not right”… just as validation.
I have been on my own since I was15, and I would guess that was mainly because of the FASD and have seen the best and the worst in people. I have a whole lot of great stories to tell… but no parent would want their child to go through what I, and so many others like myself have gone through.
The girls have reached the age where they need to fly, and that is a very important time in their lives, Mother Nature does NOT listen to reason. Now is the time all the lessons you taught them will have to serve them, to take them into the future. Being THERE for them is paramount… but you also (as you pointed out) need for them to learn that you are still there too. I would say finding them, or helping them find a friend who can assume the role of External Brain would be the best thing you can do for them at this point in their lives. Someone to trust.
I feel this is the best thing you can do for them, and yourself… we do grow and become adults and it’s through the help and assistance of people who care we can find our own limits and talents. What you taught them at home for all those years is not lost, and they are still the girls you know and love. As long as you remember that, and respect the fact they are growing up they will understand that they can still turn to you.
Sorry to run so long, but this is important and I hope I can help you to help them. I can only speak of my own experiences of course, and they may be totally different … the change into adulthood is not always easy, but it’s going to happen. That’s Nature again. Love, trust and talk to each other…OFTEN.
“The Universe will unfold as it will”… just being there helps.