FASD & Adoption: Two Perspectives
from Fall 2004 Adoptalk
by C.J. and David Lutke
C.J. and David live with their parents and seven (of 23) brothers and sisters in Surrey, British Columbia. C.J. just started a job at Winners (a department store), is in her second year of community college, and continues to speak publicly about FASD. David is actively involved in teaching second year medical students about FASD, and will be speaking in February 2005 at the national FASD conference in Canada. To reach C.J. or David, write to email@example.com.
My name is C.J. Lutke and I am 20 years old. I was diagnosed with fetal alcohol syndrome (FAS) at birth. I weighed just 2 pounds and 9 ounces because of my birth mom's drinking. I was not premature. She died of her alcoholism when I was 11.
I spent six months in the intensive care unit for babies because of all the physical and medical problems I hadseizures, breathing problems, and many surgeries for things like gangrene in my intestines. I was adopted when I was 14 months old by my mom and dad who had already adopted Sera and Michael, two of my older siblings.
The doctors told my parents I would be really mentally handicapped (which I am not; my IQ is 83) and unable to do most thingswhich I can (I love to write and do public speaking). I have at least a couple more birth siblings who would be older than I am, but I don't know who they are. No one told my parents about them so they never adopted them. We found out they existed when I was a teenager.
My parents have adopted 20 kids (over 35 years). Lots of us have what's now called fetal alcohol spectrum disorder (FASD)12 altogether, including my birth brother Michael and my younger brother David. The rest have other problems. Most of my siblings have been abused and neglected. It's like being in a regular family; we just all have different problems to deal with. Who doesn't have problems to deal with?
FASD has affected me physically and mentally. I was born with my upper leg bones in backwards. I had to wear leg braces until I was 11 so I would not fall when I ran. I had major surgery to break both my legs and turn the bones around to fix them. I hardly feel pain at all; things like sprains and dislocations (of which I have had many) do not hurt, they just sort of tingle. Things that hurt other people do not hurt me at all.
I also have visual-motor integration problems (my eyes and hands do not work together with my brain) which causes all kinds of problems, even now. I still have sensory integration disorder. I may not feel pain that other people feel, but things like pills on sweatshirts seriously hurt! I have to turn my socks inside out because I cannot stand the seams. Things have to feel right or I cannot wear them.
Mentally, I'm not handicapped, but that doesn't mean that I don't have trouble with things. My brain sometimes doesn't work like everyone else's, but hey! Everyone is different and I am just fine the way I am! That is the most important thing I learned in my family. If I didn't know that, I would spend my whole life trying to fit in instead of doing my own thing and being happy.
Things that are hard for me involve memory; I just can't remember things very well. I forget homework, to take my lunch, where I put things, what I was asked to do, things like that. I am very disorganized. Math and time are very hard to do. I can do mostly just some adding and subtracting and some multiplying, about Grade 3 or 4 level. (I figure that's what calculators and digital watches are for!) I have a terrible time with spelling and writing. I have trouble with visual motor integration, too, so I mix up the direction of letters and numbers. Spelling is tricky! I only just finally learned how to ride a bike because my balance is so awful. A boy I know from community college has taught me how.
I also have trouble sleeping, but that means I can watch TV all night sometimes! I still have trouble paying attention, especially if too much is going on around me. I zone out. I can also be very hyper at times, so Mom helps me by sending me to listen to my calming music, take a walk, or go sit with my cat. My cat really helps calm me down fast.
I am getting better with money. I don't get ripped off as easily any more. I have a best friend who really helps me out here, and Mom and Dad take care of the big stuff. I have lots of trouble telling time. I need things in digital clock time, not the way people talk, or else the numbers don't make any sense to me, and I can't figure out what I'm supposed to do.
I tend to worry about a lot of things and sometimes I have panic attacks for no reason I can think of. Going to a mall or a movie theatre is just too much and I can get all shaky. I sometimes can't make a decision because I am worried it will be the wrong one. I know this sort of thing is normal if you have FASD, and that really helps. I know I am not crazy or stupidI just have a disability that makes my brain work differently.
I also have many things I am very good at and can do well and enjoy doing. I am a good writer, and can even write poetry. I won third place in a district-wide poetry contest, and the poem was published in a book of poetry. I enjoy swimming and diving and love animals. I do a lot of public speaking about FASD and adoption at conferences and adoption training programs for people wanting to adopt kids. I am also very good at always doing my best and never being a quitter.
I think it is very important that kids with FASD, especially older kids, get a chance at being part of a family. I was adopted when I was really little, but all my other siblings were over age five. I do not know what would have happened to them without my mom and dad.
Everybody needs help with things every now and then. My mom knows exactly how to help me so that I understand things. She made programs for me and my siblings in our schools so we could do well at things we are good at. I go to an adult college program for people with disabilities, and am in a class with adults who have FASD. My teacher, whose son has FASD, knows FASD really well.
In my family, all of us with FASD are similar but very different. We have the same disability, but we are not the same people. We have different things we like to do and are good at. My parents make sure each of us succeeds at things. They do not allow us to fail. They have taught us that we are regular kids first, and kids who happen to have FASD second. They take the time to explain things to us in the different ways each of us can understand.
The best things I have learned in my family are that as long as I try my best I have succeeded, and that FASD is what I have, not who I am.
My name is David Lutke and I am 15 years old. I was in a lot of foster homesabout nine, I think. I got adopted with my birth brother and sister when I was nine years old and they were eight and six. I never lived with them until the foster home just before I got adopted. All three of us have FASD, but my brother and sister are both very different from me. Lizzie is mentally handicapped and has a lot of trouble speaking, and Thomas is smarter than most people. He gets all A s at school, even though he has pFAS (partial FAS). He is the youngest of us three kids. It is good to be in a family with other kids with FASD because now I am not so different from others.
I have always been very small until this year, and I am still the smallest kid in my grade (and I am two years behind, too). I struggle with a lot of things. I have trouble at school and a lot of trouble with math. My spelling and grammar are the same. My mom had to proofread this, and help me with the sentences so they make sense and say what I want them to say. My memory is really bad. I cannot usually even remember what I had for dinner after I eat. Teachers sometimes think I am lazy, but I am not. I try my best in everything.
I am in my first year of high school. High school can be really hard. I get the block order all mixed up and end up in the wrong classroom. I get confused very easily. I have trouble making friends. I have trouble paying attention. It is very difficult for me. I can't sit still for even 10 minutes. I fidget a lot and don't know I am doing it. It bugs people.
I don't understand a lot of things. I am not good at anything academic. My mom made a program at school for me this year that does not do academics except in the resource room. I hated it when my work looked different from the other kids' when I was in a regular classroom, so I am very glad for this.
In my family, I have learned that I am also good at lots of things. I am good at working out games on the computer, and playing games like checkers. I am very good at swimming and diving. I can do backward dives. When I came to my family, I could not swim and was very scared of the water. My parents hired a private teacher for me because I was so scared. Now I love it and swim a lot.
I also love hockey, basketball, and football. I like to go fishing with my older brothers. I am good at helping and very good at helping to look after my four-year-old nephew Andrew. He absolutely loves me. I have a job helping to watch him that I earn money for. I am also good at building things with Legos. My older brothers spent a lot of time teaching me how. I try really hard to get along with people, even though it is very hard to do.
I have done some talks on FASD. I really enjoy it and want to do more. I understand what FASD is and how it happens. I am glad I know what's different about me and glad my mom explains things about FASD to me all the time. It helps me understand why things are hard for me. I know my birth mother didn't do it on purpose. She was very sick from drugs and alcohol. She died last year. We used to visit her every month until then.
In my family I have learned how to do lots of things like how to be my own person. I have learned not to steal things. I work very hard to do things right and always try my best. I have learned lots of ways to make things easier for me to do and remember. I have learned it is okay to have a disability. It's no big deal. I have learned to respect other people who have disabilities and how to be a volunteer buddy with younger kids who have disabilities. I have learned that everyone is different, and that is okay.