Living With FAS
by Zak
Someone wrote to me and asked me what it is like being a FAS adult and how it
affected my life and if I could live my life over again would I do anything
differently and if I was open to this matter and so on, this was my response to
them...
haha oh boy, that's a biggie, frankly I despise being an FAS adult but what
it's managable with proper support in place, I still get a lot of messed up
feelings and emotions in my head, wishing I could understand why I feel some of
the things I do, and I always wonder'd what'd it'd be like to grow up like a
normal kid and not had to grow up with all this shit ive wen't through,
sometimes I still do try and place how a normal person tries to think, but I
eventually came to the sense I had to stop clinging to it, I had to stop acting
like a kid as much as I miss being one, and wishing I could start over again
without all the shit i've went through and had known about all the things I used
to do to people as in I used to so manipulate people a lot with my ways, ive
lied so many times, had friends in and out of my life quickly, most were just
junkies during my younger years. none we're real friends, more like allies in a
sense, however now I have great close friends with real closeness which I like,
and I am way more honest with people now than I used to be, and I hate
manipulating people now, I used to think it was fun, but now I find it extremely
lame and stupid, they lying now has seems to cut out a lot im not sure if I
still lie anymore or not, I could perhaps at times because of memory
difficulties and time, but ive always been honest with my current friends to the
best of my abilities and always will continue to be, I used to have so many fear
of various things and I let fear drive my actions, it was extremely unhealthy
way of living, I eventually learned to let go of the ill feelings and learnt
from it, or forgotten some about it, one of the two, as an adult for the first
of age 16-20 I was just not free, and I had refused to let myself, and I figured
out I could have been, and knew that no one could help me until I was ready to
unlearn the things i've learned and ready to move on, and seek out for some
help, which I did and found a great doctor who helped diagnose me, and knew a
lot about fas, he told me the symptoms of it, and then I went on studying it
even harder, it took a few years of pratice understanding all the negative shit
I used to do, but i've learnt to control them to some degree, when im under a
lot of stress, things really fall apart and break down for me, I like to keep my
stress level to a minimum, I used to abuse so many street drugs as a kid
Dextromethorphan/GHB/Seconal(Barbituates) being my favorites.. but ive done
others, I mainly done them cause my mind always felt so well messed up and those
drugs generally just seemed to make things fall together in a way. and didnt
have that frigged up feelings.. now I generally do abuse some prescription drugs
in a way, but they really help me, like Xanax/Nitrazepams and stuff, me and my
friend always joked and called that the drug that 'makes all your problems go
away' since you feel calm and at ease when you're on those drugs and able to
think clearly, as well as taking dexedrine for ADHD, I really wished I was
diagnosed much earlier my mother knew I had something seriously wrong with me
since I was a kid, but the doctors always said he;s fine blah blah, I slept in
school, been expelled many times was aggressive/violent, I just know if I had
access to those drugs at the time, I would have excelled in school, everyone
always knew I had the potential, but I never lived up to it during the schooling
years, I however do not know how I managed to control the aggressiveness
/violence I used to do, actually I now sorta hate/despise those things and get
feeling uneasy when a fight or something breaks out somewhere I beleive it's
probably growing up/some current drugs I take and being diagnosed and really
working on what my problems were since I didnt see I had those problems IE:
lying,stealing,manipulating, etc.. I just thought it was normal back in the day,
I may seem much wiser now but there are times when I can be pretty stupid, and
i'm generally always suicidal as a whole ive made 7 suicide attempts total in
the past most werent just crying for help, I really just wanted to die, mainly
because I had to spend so much work repairing/fixing my life back together from
the damage I did over the years, it seems to be going well now, especially now I
have really good friends, who are quite patient with me since I have
schizophrenia/fas/disociative identity disorder, I think the schizophrenia/did
were the most embarrassing things ive ever had I got so confused that was part
of the reason for my extreme lying a lot I used to think what I saw was so real,
and they looked so damn real so people always knew something was off with me and
so on, it took a really wise man to have the courage to tell me listen you have
some serious problems, you really need to go find out what they are, those
people you talk about don't even exist, he said he and some of his friends
thought I had a base case of multiple personalities and perhaps schizophrenia,
that's when I decided to get some help, he is my best friend and still is he
also explained to me that I had a crap sense of justice and moral values to
boot, that I had to clean myself up quickly and fast, or ill start losing
things, like him, dominic my second best friend, and other people that cared
about me, not because they have to, but because they chose to, when their being
there wasn't enough for me, it'd be their choice to ultimately walk way... him
explaining the crap sense of moral justice/values etc he meant by me thinking I
had to hide stuff, from people that were my friends by telling tall tales, lie,
cheat, and so on, and explained that it was poop he told me just because the
world has done me wrong, doesnt mean that I compromise my values as a person,
and do things I knew that are wrong, he told me i'd find a way, no matter what,
that'd i'd fight my way out of the shit that I was in, and to stand proud and he
told me to never ever give up.. never. he told me a lot of other things as well
which really helped me battle my way of trying to defeat FAS, most people today
wouldn't even be able to tell I show many if any signs of fas, like they could
during my earlier years/teens if it wasnt for rob my best friend and his wisest
ways helping me out, i'd probably be out lost somewhere, being drunk and on the
streets and still doing drugs or perhaps maybe even dead.. I was extremely lucky
to have a close friend like him, to help guide me and go throughout my rough
times if I was to start my life over again, I would love to have done it by
having real close friends from the start and being diagnosed early with proper
support, and not had lied and manipulated people, and pretended to be someone I
wasnt... but to me that's the past it's an uncontrollable thing so it's how I
shape things now for the future is what is what im working on... if any more
questions feel free to consult me...
and im generally open to anything in this general matter...
take care and hope some of this helps :)
Zak
For just one day, i wanna feel totally free.
Rogue Sunflowers
by Bonnie Buxton
I was serenely independent and content before we met,
Surely, I could always be that way again, and yet...
In the musical comedy, "My Fair Lady" (based on George Bernard Shaw's play, "Pygmalion") professor Henry Higgins attempts to turn Cockney flower seller Eliza Doolittle into a lady -- and in the process, he, too is transformed. Similarly, my husband Brian and I had no idea of the impact that our adopted daughters (not biologically related to each other) were going to make in our lives.
When Cleo (now 25) and Colette (23) were little, I thought of them as my "rogue sunflowers," those bright and sturdy seedlings that pop up under the bird feeder in spring. Would they be tall or short - would they have huge blossoms or small? One thing for sure - their impish personalities made them totally captivating.
Cleo was two years, eight months when we brought her home - a chubby blonde cherub with huge, sparkling blue eyes, who had been in foster care since the age of three months. Her two favorite expressions were, "I do it myself," and "I wanna fwing (swing)" and over the next year, I thought my arms were going to fall off from pushing her on every swing she spied.
Three years later, we adopted three-year-old Colette -- a chunky tomboy with a mop of curly blonde hair, a snub nose, wickedly irresistible grin, and golden-brown hazel eyes. Her idea of playing with a Barbie doll was to remove Barbie's head and use the body in the bathtub to troll for whales. We spent a lot of time in emergency wards getting Colette patched up from various risk-taking accidents.
Life was fun though crazy until the girls started school, and our bright, inquisitive daughters were unable to learn to read. We watched each of them slip behind her classmates - and watched heartbroken as their self-esteem crumbled. Cleo, always funny and outgoing, became a shy, terrified introvert. Colette's approach was to join a group of tough little boys.
Getting extra help for our daughters was an endless series of hurdles. First, they needed to be assessed for learning disabilities - involving a minimum wait of a year to see the school board's psycho-educational consultant. Then we waited for the report to be written up. Next, the wait for the "IPRC" - (who knows what the letters mean?) - often known in other parts of the world as an "IEP" (Individual Education Plan). After we'd managed to get the IPRC, then we were placed on a waiting list for special education help.
Cleo managed to be placed in a special education classroom, half-days, in September of third grade. No significant help was available for Colette until fifth grade. Phonics were forbidden as the school system was teaching "whole language." We were always discouraged by the teachers from trying to teach our children the phonic codes. The Ontario curriculum insisted that children be taught to read by memorizing "whole words" - even though psychoeducational tests indicated that both girls had poor short-term memories. Each eventually taught herself to read - Cleo, the summer before second grade; Colette, in sixth grade, on vacation in Jamaica, with no TV but a whole lot of her sister's mystery books to unravel.
When our daughers hit their teens, other problems emerged. At 16, Cleo became desperately unhappy, unable to cope or concentrate on school, and didn't know why. She was in love with a gentle and supportive boyfriend, had made new friends, and everything should have been fine. Aware of her birth parents' bouts with mental illness, I immediately took her to an adolescent psychiatric clinic, where she was diagnosed with severe depression. It was three years before the doctors could get the right dose of antidepressants to combat chronic depression, made worse in winter (Seasonal Affective Disorder). By eighteen, she had also been diagnosed with Attention Deficit Hyperactivity Disorder.
Colette's learning problems resulted in severe acting-out behaviour that took us on a journey to countless psychiatrists and social workers, through the court system, and she eventually spent two years in a residential treatment centre for emotionally disturbed adolescents. When she was nearly 18, I saw a TV item about Fetal Alcohol Effects (FAE) now known as Alcohol-Related Neurodevelopmental Disorder (ARND) and made the link between Colette's learning difficulties, behaviour problems and addictiveness with her birth mother's drinking in pregnancy. We learned that there is virtually no help available for adolescents and adults with ARND in Ontario - with one-third of Canada's population. Researchers believe that about 300,000 Canadians live with Fetal Alcohol Spectrum Disorder (FASD) -- the umbrella term which includes ARND, Fetal Alcohol Syndrome (FAS), partial FAS (pFAS) and other alcohol-related birth defects.
Most Canadians with FASD are undiagnosed. Much research indicates they are at high risk of the "Secondary Disabilities" such as school drop-out, addiction, poverty, unemployment and involvement in crime. Secondary Disabilities occur when people with FASD are not diagnosed, and they are not given adequate support from family, schools and community.
When we brought home our little rogue sunflowers, we had no idea of the life-threatening problems that both girls would face, and how we would have to fight on their behalf. We also had no idea of the way that our society treats children with invisible disabilities - and their parents.
Both of our daughters deserved better - from the health, education, and social services systems. Cleo continues to struggle with her learning disabilities, ADHD and SAD - but she managed to complete high school with lots of special education assistance. Knowing her family background of mental health problems enabled us to obtain a diagnosis within weeks of her first attack of depression, and this may have saved her life.
If we had known from the beginning that Colette was at risk of having ARND, we might have prevented or reduced some of her learning and behaviour problems. Instead, teachers repeatedly told Colette to work harder and concentrate. Therapists told us to improve our parenting skills, although we worked hard at building solid, nurturing relationships with both daughters. Colette now 23, lives on government disability support, and has two preschool children. We are grateful that she did not drink in pregnancy and is working hard at being a good mother. Unlike many young women with undiagnosed fetal alcohol disorders, she is not living on the street, abusing alcohol or street drugs, or involved with crime.
As the song says, Brian and I were "serenely independent and content" before our daughters entered our lives. We believed that unconditional love and a middle-class upbringing were all that a child needs to survive. Now, when we see homeless people or read newspaper stories about adolescents or adults who have committed stupid or terrible crimes, we are not inclined to judge. We know that most of these individuals are struggling with invisible disabilities made worse by dysfunctional families and an uncaring society.
Along with the tears and terror, our daughters have brought us joy, laughter, and love -- and gratitude. We're grateful for having been part of their lives, grateful that we have had the ability to fight for them, grateful for the opportunity to meet hundreds of incredible people we would never have encountered otherwise. Over the past twenty years, our perky little daughters have grown into beautiful young women. We look on with pride mixed with sadness, as each struggles daily, valiantly, with invisible disabilities. Their determination makes us continue to fight, not just for them, but for all children and adults with learning difficulties and mental health problems.
In nurturing our fragile-but-sturdy sunflowers, quite possibly Brian and I have grown the most of all.
Broken Beaks
and Wobbly Wings
by Teresa Kellerman
"Honey, you must give your children roots,
but you also need to know when its time to give them their wings!"
I often think of this with our children and little by little I am trying to do that. I am learning to let go with my teenager who doesn't have FAS. I know I can trust him to make his own mistakes and be his own person and grow up the way he decides to grow up. I can let him learn to fly on his own. And I can allow him to become the person he is, not the person I want him to be. And that's okay. One of these days he will leave the nest and I will be soooooo sad, grieving the leaving of my "baby." I know he will fly just fine, because he has good roots and strong wings. He will soar to heights I can only dream of.
I want my son with FAS to have the same chance for independence. But I know it will take longer before he is ready to leave the nest. After he leaves, when I can't be with him, he will need a support network to help him manage.
Steve Neafcy describes what happened when he tried to leave the nest too soon:
My problem was not knowing I was FAE until age 43 years. I was expected to fly with the flock when I had a broken wing! Using this broken wing to try to glide with all my peers was a living hell but the worst was failing and seeing the Disappointment in Mom and Dads Eyes...
Our alcohol affected baby birds, like all other baby birds, want to leave the nest. Everyone (family, society, school, psychologists) seems to say we should give them their independence, even if they have disabilities. If we don't we are called "overprotective" and "hypervigilant" and accused of not allowing our children to enjoy the freedom that other kids have that our kids should have too. We should let them fly, so we're told.
Let's look at those wings. They look normal. Hmmmm. The wings aren't broken, they just didn't develop fully, they are stunted at baby bird size underneath all those feathers, and cannot support an adult bird in flight. But nobody realizes that until the grownup baby bird takes a flying leap out of the nest and lands on his little beak!
Oops. Too late.
Now the wings really are broken. So we take baby bird back into the nest, but now we have a baby bird that's a grown up bird with a bent beak, wobbly wings, and a taste of the freedom of flying through the air. And he wants to taste that freedom again, so he flies again, even knowing he might crash again. So it goes.
Now, what if we can't take baby-boy-man-bird back into our nest? Or what if we can't keep him there now that he has been out of the nest? With broken wings and a bent beak, he will be the laughing stock of all the other birds and he will also be a candidate for becoming cat food. Yeah, there's cats out there, and dogs, and coyotes, just waiting for our little birdies who try to fly but can't.
I'm not going to explain who the predators are, you can figure that out. Vulnerability is a secondary disability, remember? So is arrested social development. So is impaired judgment, and lack of impulse control.
Not conducive to flying freely in those tempting blue skies. When our birdies fly, they see lots of pavement and never a mountain top.
This message is not a slam to the moms and dads of birdies who have flown and crashed. They didn't know this was going to happen. They all tell me that if they had known then what they know now, they would not have cared if they were called "overprotective" or "codependent" or "hypervigilant" or "neurotic" or whatever else we've been called. They would be even MORE protective and vigilant.
This message is not meant to squelch any parents' hopes for their child's future. The failed flights that we see today are due to lack of adequate intervention in the early years, and also were fueled by false hopes fed to us by the disabilities community and others who, meaning well, have pushed independence and inclusion and mainstream as though our kids could just sail right along with their peers if we only "let go."
Maybe some of the little ones really will be able to fly when they are older. The chances for independence in living and employment for kids with FAS/E growing up in the 80's is very low, according to Ann Streissguth, but I'm sure that chances will increase as we learn more about effective intervention strategies for FAS/E. We also need to work on selling the importance of these interventions to the "system" so that our birdies get the support they need to fly, even if it means flying with them to support them when they start to veer off course or take a dip too low.
Even if only 10% of those birdies with bent beaks & wobbly wings are able to fly, that means that one in ten might be able to make it. We know that the range of alcohol effects is wide, and each child has unique abilities and disabilities. We know that there are many problems that are inherent with the syndrome. But we also know that a few can function somewhat independently. Parents can draw from the wisdom of those who have traveled this path before, but in the end they will need to rely on their own judgment to determine if and when that time to fly may come. Every child has the right to earn whatever degree of independence he or she is capable of without jeopardizing the loss of that independence. The child also has a right to safety and quality of life. It is crucial to be able to recognize the limitations without losing hope of fulfilling the child's potential, in order to find the balance that offers the greatest chance for success.
We need to be realistic in the hope we offer to younger families. It is not fair to encourage parents to have unrealistic expectations for the future of their children. Hope that is built on false ideas today will be crushed mercilessly in failed attempts to fly tomorrow. I think it is healthier to give parents a realistic hope mixed with warnings of the dangers inherent in FAS/E that might be a little hard to swallow now, but in the end a lot of pain and grief can be avoided for families.
I was fortunate enough to have good information available to me as during Johnny's adolescent years, and I had the foresight, even before Streissguth's reports were released, to know that Johnny would never be able to fly on his own. So I prepared him for this, starting way back when he would talk about "when I grow up, I want to drive (marry, be a daddy, become a famous drummer in a band that makes millions of dollars, etc.) Now, I was careful enough to not burst his bubbles completely, but I also loved him enough to not let him believe that all those dreams would come true. Instead of taking away his dreams, I changed his dreams a little. He can learn to drive (way out in the middle of nowhere), and marry (if he ever finds someone who will have him), or stay single (no shame in that, I learned), be a daddy (to a puppy or two), make lots of money (70% of minimum wage is a lot of money in John's eyes) and become a famous drummer (almost everyone in Tucson has seen his video or has seen him on TV or in the newspaper, so he feels famous).
Does he want to fly? Of course he does! But he knows his abilities and his limitations. I remind him of both as often as I need to in order to keep him balanced between reality and dreams. He accepts his disability, with moments of frustration occasionally expressed with verbal outbursts that are not unlike those of my non-disabled son (non-abusive and quite appropriate). For every moment of frustration with not being able to fly, John has several moments of appreciation, joy, excitement, expectation, hope, and happiness about living his life in this nest.
And I take him flying with me as often as I can. No "real" independence is in John's future, but he feels free at times and he feels happy most of the time, and he is safe and secure within the limitations of the home nest, and accepts the restrictions of flying only when he has his wing supports on (mom, brother, mentor). This boy-man-birdie has a straight beak and a strong body and a bright mind and a happy spirit. The wobbly wings don't really bother him that much, because they just aren't an issue. But we never forget for a moment that those wings will not carry him farther than he can fall.
My job as mama bird was never to prepare John to fly off on his own. My job has been to ensure that the proper supports are in place so John never has to experience the pain of hitting that pavement or the fear of being confronted by predators. My job is not done yet, so I'm keeping this little bird right here under my wings, that have become stretched and strong over the years of being "overprotective."
"Somewhere over the rainbow, bluebirds fly... Birds fly over the rainbow, why then oh why can't I?" Let's find some rainbows! And let's help our kids fly, but never, never alone. I made a promise to John once. He came to me with such anxiety and fear. He said, "Mom, I know I can't behave when I'm on my own, and that I need you there to remind me of what I forget. Mom, I'm afraid that someday when you aren't here to be with me, that I won't be able to help myself, and I will do something bad and get in trouble, and I will go to jail. Mom, I don't want to go to jail. I think I would be better off dead than going to jail." I made a promise to John that day. I said, "John, I will not let you go to jail. I will do everything in my power to keep you safe and to protect you from your disability. You know you need someone to be with you all the time, every minute, in order to stay safe." "Yes, Mom, I know." So we work together to educate the "system" and to look for alternate means of support, because these old wings aren't going to hold up forever.
Some birdies don't need too much support, and some can actually fly with minimal assistance, but there has to be some kind of safety net in place just in case. Hurray for the few who can make it and thrive. May they see all the rainbows and mountain tops they long for. Remember though, this is the exception, not the rule. I'm not being pessimistic, just realistic. I feel fortunate in that it is relatively easy for me to provide John with wing supports (for now, anyway). Some birdies are heavier, so to speak, and need stronger supports than parents can offer.
Sometimes the community is not willing or able to help with those supports. I want to reach out to some of those parents and offer help. That is so hard to do so far away. That is why I do everything I can to gather twigs of information and tips on building stronger nests. Let's all work together to strengthen our communities so we can take our kids over the rainbows and up to the mountain tops. Let's work on making our own nests secure. And let's be careful about false hope that is given as misguided encouragement that could result in parents pushing the birdies out without safety supports.
During the early years of my parenting John, there was not much information available on what to expect for his future. I had to wing it, so to speak, and had to rely on basic good parenting and my own maternal instincts. There is so much more known today about what intervention strategies work best. Even though we can't change the primary disabilities of impaired neurological function that stunt social development, we can learn how to parent in ways that minimize some of the more avoidable pitfalls, and increase the chances of success in school and on the job, with relationships and with life in general. We might not be able to strengthen those wings, but we can strengthen the safety nets, and we can encourage our young to fly tandem, with mentors and coaches, who can accompany them as they discover all that life's expansive horizons have to offer.