Sunday, November 21, 2010

Looking back

Last night, I was at my neighbor's house doing some cleaning for her (be quiet everyone, I know my house is a pit! And I am not going to come clean your house so don't ask. Of course, unless you pay me). I brought Akila with as she has a VCR (ours broke 3 years or more ago), and Akila use to always watch home videos of when she was a baby. She calls them "The Akila Show". Someday, I will get them transferred to DVD.

So I was in the kitchen cleaning (Kathy had her kitchen painted and a new drywall ceiling put in, so there was lots of dust). Akila was in the next room watching the video. It was not annoying at all to listen to myself and Michael in our most annoying baby voices for two hours, going on and on about nothing! She was our first child, and we had that recorder on all the time. For 30 minutes waiting for Akila to say something, or do something cute. Way too long. But she loves watching it.

She calls it the Akila Show, even when Imani and Hezekiah are in it. Zeke isn't on the VHS tapes, we got a new one by the time he came along. We did not figure out Akila's FASD until she was 6, in first grade. When she was probably 2 years old, I always thought there was something off with her. Before 2, I didn't have too many concerns. She did have some very fussy times as a baby- we got her at 5 weeks old. But she hit all the developmental stages on target.

By 2, I knew there was something off. This is when our Pediatrician would always tell me she was fine and to relax. Then, we adopted Zeke when Akila was 3. He was my preemie who was very sick. We were in and out of Children's Hospital and that is when I fell in love with Children's Hospital and Clinics. We switched to a Pediatrician there and on her first visit with Akila, before she knew I had concerns, she caught some warning signs and sent us to a Neurologist. Akila was then diagnosed with Turner Syndrome- we thought that answered the questions regarding her odd behaviors. Little did we know.

Anyway, back to the video. Watching it, or should I say listening to it, and knowing what I know now about FASD, the signs were all there. This is what bums me out about the fact that we still do not adequately train adoptive parents as to what to look for. She was a camera hog, and wanting all the attention constantly. I know, some of you are saying that your typical child did the same thing. Stop. It is very different, and I don't know how to totally explain this. It is over the top camera hogging. It is a glazed over look on her face when she hits baby Imani and is told "no" and "to be gentle", and does it again. Obviously, situations like this, are common with typical kids. But there are no episodes with my other kids doing this stuff on the videos. And if they did, they were more likely to stop when directed to.

There is an intensity about her that you see in these videos, that is still there today. I did have something in my stomach telling me there was something wrong. But I did not know enough what to be looking for. Akila was diagnosed by age 6, which is one of the protective factors that Dr. Anne Streissguth has studied. I do wish we had figured it out earlier. It would have saved several years of banging our heads against the wall. We tried techniques that work for typical brains, but not for the FASD brain. We could have saved a lot of stress, a few pounds (maybe), and a lot of anger.

We really need to start training adoptive parents on some of the early signs of FASD. The truth is that you don't always know if there was alcohol exposure during pregnancy for a number of reasons. I have had an argument with an adoption proponent who thinks that too many people would back out of the adoption process if they were more informed about FASD. I say, that those are the people who should not be adopting then. And I truly believe that the majority would still be interested in adoption, they would just be entering it with their eyes open.


dorothy said...

Thanks for writing my thoughts out - were you in my head again while I was sleeping? :) I'm linking you over now..

GB's Mom said...

It is so much easier to see the signs of something when *looking back*. I think you were right, pre-adoptive parents need to be educated about FASD. It may not change much, except for weeding out adoptive parents who want a doll, not a child. Between my course work and my autistic nephews, I know a lot about autism. Yer, when they used autistic applying to GB, I never saw it coming.

Sue said...

Hi Barb,

What a timely post. I found your blog through Dorothy's. Your post really caught my attention, as we are in the process of adopting a Safe Haven baby from foster care. However, it's been documented he was prenatally exposed to alcohol and marijuana. We've attended some training on FASD, and we're trying to educate ourselves through blogs like yours, Dorothy's and Kari's. Believe me, I'm doing everything I can to become better informed but could use a little direction. Looking back, were there any signs during your daughter's infancy? I'm also wondering if there is a special pediatrician I should be seeing that would be able to detect some issues before we get too far down the road. Our little guy is 5 months old. Thank you for sharing. You, Dorothy and Kari are greatly appreciated, along with all the special parents out their who share their wisdom and insights because they're living it :). Blessings - Sue

Psycho Mom said...

Hi Sue,
Not sure what area you live, but I would highly recommend our Pediatrician at Children's Hospital and Clinics. She is awesome! I have not found one who specializes in FASD, but she has read some books I have given her and is great. Email me if you're in the Twin Cities and I will give you her info. Also, if you haven't, read Damaged Angels by Bonnie Buxton. Very good book to help get better grasp of FASD. I really want to know if you're in my area. I can tell you the number to call for an Early Childhood Screening that is extremely important!!! Shoot me an email if you'd like, my email is listed on my blog. You are in for an awesome, rewarding, and challenging journey!

Jennifer P said...

Thank you for your thoughts on this. I have a two year old who had a rough go prenatally with drugs and we just found out alcohol for the first 5 months. He has a few quirks. I have been wondering at what age things begin to come clear and your post helped shed some light on that. We live in the Northeast. And YES we would have adopted him if we had known, in a heartbeat.

Kari said...

I have been advocating for years that we need to start by making FASD training mandatory for foster parents. Currently in MN foster parents are only mandated to have carseat and shaken baby training but we know that 70-80% of the children they are caring for will be affected by prenatal exposure to alcohol!

Adoption trainings must include FASD and it has to be presented in a way that prospective parents will hear. I train one agency's prospective parents 6 times a year in a two hour training. It isn't enough but it is a start.

Keep educating and inspiring people, Barb. We'll get there. ♥

Sue said...

Thanks Barb for you responding to my questions. I'll email you with the details :). Kari, I cannot thank you enough. I sat through your training on FASD when I was just newly licensed as a foster parent. After your training, I felt encouraged. Over the past year, I don't recall a whole lot of training on FASD being offered. I've had to find other resources. Additionally, during the adoptive parent training, it's hardly touched on :(, although we're given some written materials. Our little guy was exposed to alcohol, and yet I have people telling me "I think he'll be fine. He's doing so well." Maybe he is doing well at this time, but let's see how this little guy will be doing down the road. Thanks for sharing your life with us Kari, and all you do to educate people!

mindfulness said...

I didn't realize you have had Akila since she was 5 weeks old. I have a much greater understanding of the process you have gone through. Adoptive parents of children of any age have many puzzles to solve to fully understand their kids. But I think it is most puzzling with the youngest infants because there are often so few clues in the beginning.

Journeying said...

Up here, they won't assess a child for FASD without confirmation of birthmom's alcohol use.

From one adoptive mom to another, wishing you and your's all the best through the holiday season!