Sunday, September 9, 2012

Today is FASD Awareness Day............

I have not spoken on the blog very much about Fetal Alcohol, other than to say that LGA has it.  If you had asked me if I would have adopted a child with FASD, (Fetal Alcohol Spectrum Disorder) I would have said "NO WAY!"  That was one of the specific things I didn't want to have in an adopted child.  However, we met the girls and my heart felt a pull towards LGA.  She was a very sweet, sweet 3 yr old girl.  We were quite taken and didn't hesitate to take them at the disclosure meeting. I think we got as far as the car and trip home before we'd decided the girls would come home to us.

Fast forward 4 years and life is SO much different.  The sweet little 4 yr old is gone.  In her place is a confrontational, tantrum/fit, argumentative, sometimes defiant, 8 yr old.  She struggles to learn as her brain 'skips' and she can't retain the information she learns.  There has been great discussion on various support boards, about retention and why children can't learn.  I was told that for LGA it means her brain skips and can't retain info, so a lot of repetition is needed. LGA has a whole host of issues, including ADHD, OCD and probably some sensory issues.  She may have some mood disorders, I'm not sure, so getting her tested this year is probably in order.

Life is hard living with a child like this.  She is "special needs."  and in our first years I was naive. I only thought she had some speech and some learning issues. I didn't read about FASD.  I should have, but I just can't go there sometimes.  It makes me sad to think of what she faces, what we face with her.  One friend's mom who has some experience with this, at a gathering, when told that LGA was FASD, just uttered an "OH."  Like "wow, hope you knew what you got yourself into."  We didn't. Now we know what it is and are experiencing it full force.

I have something to share with you that I have not shared with too many people. I hesitated on whether to post it but I am going to share anyway.

A few months back, around March, my mother and I shared a conversation one morning. I thought I had shared about LGA with mom and that her birthmother drank alcohol when pregnant with her.  But mom had some dementia, and she didn't really remember that we might have discussed it.  As I talked about LGA and some of her issues (I think I was telling her about her special ed class and that's what led into this conversation) my mother shared a startling truth with me.

I had always known my mother smoked with all of her pregnancies.  At that time she told me, the doctors were just finding out about how much cigarette smoke affected the fetus.  This was the 60's by the way, so long before a lot of research was being done on the effect of cigarettes on fetuses.  I was a preemie baby, born early and with some issues, enough to land me in the NICU for a month or so after I was born. I was 3 pounds 2 oz.  I had eye issues, and had eye surgery at 4.  I always get a cold in my chest, and get bronchitis.

So as mom and I were talking, mom shared that she consumed alcohol while pregnant with me.  That she didn't know about the effects of it.  She told me that my father, who was a merchant marine and away at sea a lot, happened to be home more during her pregnancy with me, otherwise, (and here is the kicker) she would have been drinking more while pregnant with me.  WHOA!!!!!!!!!!!  I totally did NOT see that coming.  Really, she had NEVER shared that she drank alcohol while pregnant with me.  This totally explains my brother's life.  I know now why his life was the way it was.  I think my poor mother, who was feeling guilty about his life and death (she had nothing to do with it, could not have prevented it but was convinced she could have prevented it) also realized what she said and realized what it meant for my brother (and possibly me, but I didn't want to upset her so I didn't delve further, but I really wish I had had this conversation when the girls first came home).  I had no way of knowing that she consumed alcohol while pregnant with me so I shared what happens when a woman is pregnant and consumes alcohol during pregnancy.  I never knew.

So as I raise my daughter who also had a birthmother who consumed alcohol during her pregnancy with her, I wonder if that is why she was placed with me.  I wonder if I was chosen to raise her because of my own background?  I started looking into my own school years.  I do not in any way know how much my mother consumed.  I started to think back on my school years and what subject I had issues with - Math.  I had a very hard time with Math.  I never took algebra, I never took trig.  I didn't like sciences at all, yet I liked English and always read from the time I was young.  I wonder if I have ADD?  I have noticed in later life that I have a hard time focusing on one thing (if I had work on projects for example) and getting started, but I would always get it together and finish.  I am a procrastinator.  I started looking hard at myself, and then my mother became ill and I shelved it to take care of her and everything that needed to be done when she passed away.

I think I have some understanding of what LGA struggles with.  I don't know how I felt about it at first, if I had to say, I'd probably sum it up to surprise.  There was some anger at my mother over the years when I couldn't get pregnant, when I suffered early onset of menstruation, and then a full hysterectomy 8 yrs ago.  She felt guilty about that but we talked and I told her it was what it was, and we had to move on.  She didn't know what is known today.

But it makes me feel closer to LGA, closer to what she goes through. I have gone back to my childhood (I should dig deeper but I'm not ready to yet) to examine what I was like as a kid. I too, threw tantrums and fits, but was ignored, so I eventually gave them up.  I too, struggled in Math.  Do I have other issues?  I'm not sure.  But I know that I have shared with her some of my background, that I think we share this 'disorder' as it's called, and that when I adopted LGA, I had no idea we did share it.

The path for a FASD child is a hard one. I don't know what LGA's life will be like. I don't know what her future holds.  All I know is I love her, even when she frustrates me due to this disorder, and the OCD, possibly sensory, and other issues she faces. But we share something I never knew we did.  I have appreciation for the struggles she faces every day of her life.  I strive to parent her some days when it's really difficult.  But I remember that conversation with my mother and knowing what I do about FASD, I wonder where I fit as an adult, on the spectrum.  I wonder how I did not know..........all these years.  I love my mom and I know that she did what she did without knowing about the effects it had on her children. I don't fault her for it. I wonder how many other children of the 50's and 60's are out there whose mothers consumed alcohol while pregnant with them.  Perhaps more research needs to be done.

We struggle every day to meet LGA's needs, to know if we are doing enough.   We will continue to fight for her every day of our lives.  We will advocate knowledge to birth mothers about drinking during pregnancy.  We will continue to struggle during the hard times and appreciate the good times.

A quote I saw on FB today:

It's SO true.  Please support awareness of this disorder.  You just might find surprises along the way (as I did).  Hug your special needs kids extra hard today.


  1. Yep, I know you get it...........but man, it was shocking to hear my own mother had consumed alcohol (and I never got the chance to ask her how much) during her pgcy with me. Last real discussion we ever had together. I was saving asking her how much she thought she had consumed, for another time. I did not get that chance, so now I'll wonder.

  2. Wow, that was some kind of bombshell. But you know, in a way it was also a gift she gave you at the end. The gift of understanding that you now can take to your daughter. You can look at her differently, almost like a lightbulb of a shared truth went on inside of you. Your Mom gave you some commonality to share with your daughter even if it is something difficult and tragic, with that being said, it is something that will help you to understand her even more now than you did before.

    I'm so sorry that you weren't able to continue the conversation with your Mom.

  3. Exactly, Leigh. So well put. Me too, but you know, we shared other conversations so there is that. We did talk about mom smoking when she was pg, there are just so many other questions I wanted to ask but because I could see that she really thought about what she shared and a lightbulb went off for her, I sort of let it go. So I have to go forward with LGA and I, and she doesn't understand what we have in common but I will share with her as we go forward, and hope it helps her in some way to see she is not alone.