A Walk in FAS shoes……FAS Awareness day Sept. 9th

Posted: September 15, 2012 in 2012, A Walk in FAS shoes......FAS Awareness day Sept. 9th, Raising Hearts

This month we celebrated FASD Awareness day on Sept. 9th.
Alot of people spoke out. I wonder if people realize just how bad being affected in the womb, by alcohol, can be though?
You don’t normally see the disability in infants.
A child is born looking like cute normal usually, everyone thinks they are fine. Wow I got away with it. I drank and nothing happened to my baby.
I did not know that my kids were seriously damaged until they were in their teens.
I knew that they both had ADHD, and Jon had such severe problems always in school, but NO ONE would help me and I was the one sort of blamed for his behaviors.
I mean the thought crossed my mind that his behaviors were inherited some how and maybe drugs and alcohol affects, but I knew NOTHING apart from reading the Braided Cord book years ago, about fetal alcohol syndrome.
In the book, he described a son who was mentally retarded, wore diapers until later in life etc.
That wasn’t my Jon.
Schools are full of damaged kids that no one understands.
It wasn’t until Desi and Jon hit their teens that it got serious, they began to level out with their abilities and I got the message that they had this and spent so much time researching it.
So our world is raising kids that sometimes appear to be naughty little kids that are hyper, maybe have learning problems etc. and they JUST DON”T KNOW! Until later in life, just how bad this is.
They don’t go to college as expected. THey can’t hold down a job. They can’t take care of themselves properly. They end up with mental disorders, ADHD, and low executive functions. Often they need help for life!
When tested, most of these kids will fall in the delayed areas. They have memory damage that leaves them a life long shortage of ability to just organize their lives. I mean alzimers hits old people and they loose their memory and we all feel the grief of loss, but these kids live with this daily, all their lives.
Both Desi and Jon now need someone to help them manage their lives in a huge way. They just are not very able in many areas. Both of them are great young adults, but they were robbed of their future’s by their mom’s lack of understanding about drinking in during pregnancy.
Now Desi has met her birth brother. The story is on my website http://www.parentingfasdkids.com under Desi’s miracle.
He too has dealt with this and he knew all his life that something was wrong, but didn’t understand what was wrong. Joshua is a huge blessing in our lives now for Desi.
Close your eyes and picture self as a baby. You are born. Everyone just loves you. You are a sweet, adorable baby. You grow up to start school. All ready you have had more discipline issues then the average child. Maybe you didn’t potty train on time. Maybe you still wet the bed. Maybe you were often unable to control your emotions and you cried alot. You have no clue that you had a time bomb ticking inside you.
They sent you to school. You didn’t fit in so well there, but no one understood you and they tried to make you fit.
Complaints came home to your parents. Parents argued with teachers. Parents were blamed and therefore tried harder to get you to comply, be normal.
Soon your parents had you on an IEP. You were too hyper to learn. You often got hurt very easily and spouted off to teachers and other kids and you were blamed. You didn’t feel like you could help it, but you were blamed.
Home work was impossible, but your parents always tried to get you to do it. So your days were filled with stress of trying to do something that you could not do well. No one noticed that anything was really wrong though. No one connected the dots. You were just a hyper kid that couldn’t behave or learn well, so they were always on you.
Later in your school days, people started giving you medications to control your behaviors. By now you don’t feel so good about yourself. All the blaming has left you feeling like something is wrong with you for sure. But no one notices. To them, you are a troubled kid. You just don’t fit the norm. Maybe your parents don’t know how to raise you, they think. Maybe you just need some more discipline. Someone needs to shape you up for sure.
You begin to slip behind your peers. You spend lots of time in the principals office. A future criminal, some say.
Then it is high school time. By now you are emotionally around 10 when everyone else is growing up. You feel like a lost puppy at times.
You have tried your very best most of the time because you have learned that trying is all you got, but over shadowing trying is a brain that just can’t understand things alot of the time, can’t remember things most of the time and can’t put ideas to gether. You suffer from a lack of motivation and people call you lazy.
You don’t even know how to tell them that you are not that, because you have no real understanding of what lazy means. So more put downs land on your doorstep and crush your spirit some more.
Your lack of emotional controls are starting to loose touch with the lack of understanding from the rest of the world and soon you are firing off alot at people. This is a vicious cycle that is met with more pain and problems because now people are angry back at you often. Your world feels lonely and cold. You can’t sort all that out though, because your brain is so damaged that you don’t understand yourself at all, much less why everyone else is after you.
Eventually you get into trouble for taking stuff from others. You didn’t know for real that it was wrong. I mean you saw it, you liked it, you took it to use. Your brain didn’t connect that with any laws.
But someone is really giving it to you now. YOU STOLE. YOU BROKE THE LAW.
You find yourself in court and you have no explanation for it. Like a toddler that wants it, you just took it, because you wanted it. You didn’t mean to hurt anyone, but more people are making you feel like an inch tall because you are now a law breaker, a criminal.
How did you become a criminal? You were just born, this cute little baby that everyone thought was cute. You were fine. Life just went on.
HOW DID THIS ALL HAPPEN? You are a victim. You are a victim for life unless SOMEONE comes into your life, gets educated on FASD and helps you.
Someone needs to tell you what happened to you. They need to protect you from yourself at times. They need to advocate for you. They need to stand up for you, as you are not able to do it for yourself.
Someone needs to tell you that you are a good person. They need to tell others that you can’t help your behaviors, so that others don’t try to make you fit into the same mold as neuro typical kids. Others need to love you no matter what. They need to give you a safe place to vent your emotions. They need to listen you you more. They need to hold you when you cry and kick and scream.
You don’t know this yet, but your life is going to get stuck in your teens. You are maxing out what your brain can function at. You will still slowly be able to grow up, but you may always need that somebody for the rest of your life to help organize your life, for you. You may need them to remember things, help you manage time and money, and even to find clothes that fit you, since concept of sizes might not be there.
You will never be able to fly the nest totally. If you do, you could end up on the streets as homeless person. You just don’t understand how to pay bills and you are having a horrible time keeping a job. In fact you are late so often and seen as lazy on jobs, that you are fired over and over, even if you are able to get jobs.
If someone advocates for you, keeps track of time to go to work, tells you how to dress for work, helps keep your clothes organized so you can find them, well then you might hold down at least a part time job. However it costs alot more then that to live in this world. You are not making enough money. You are doing your best, but your best isn’t good enough.
So then you need someone to advocate for you again. You need disability services.
By now you have a long list of medical diagnosis and you need insurance to pay for the medications, but you are not able to manage a job that can pay for insurance.
So if you are one of the BLESSED ones with FASD, you have that help. If not, you are probably either on the streets by now or in jail. You are not alone though. There are tons more out there like you.
They had brith mom’s that were not given education either. They drank to cope with their lives and produced kids like you. You feel hopeless, helpless, sad, overwhelmed and you don’t have a future.
Yes you were a cute little baby, maybe even a fun little kid. Everyone thought you were fine. Everyone tried to make you fit into what a normal kid should be like.
It snowballed though. You didn’t fit and you could never fit. You have brain damage. Your birth mom drank during her pregnancy and sealed your fate.
 Do you really know how blessed you are? Your case is milder then many. It can be much worse. You could have been far more mentally delayed. Your symptoms could have shown up right away. You could have serious physical problems too, as alcohol is not a respecter of cells. It kills brain cells, but it also kills cells in other organs in the body. Yes you got off easy for having FASD. 
Please know that this is so REAL and is happening OFTEN. Just hear my heart. Nine months of abstinence from alcohol can give your child a chance at a normal life and not the one depicted above.
If you don’t think that will happen to your child? If you think you will have a cute baby. Read this again. Cute doesn’t make one’s brain healthy. Life long heat ache awaits your child if you pick up that drink.
No amount of alcohol is safe in pregnancy. NONE.
Do some escape it? Some have. It is like playing russian roulette. Alot won’t escape it and you won’t know if your child  will or not. You won’t know at birth most likely either. You might not know until they are half grown up. You won’t understand it even then, unless you get educated about FASD.
It breaks my heart that our world is IGNORING THIS! Alcohol is legal and we are damaging so many of our children because we just don’t KNOW.
Terry Quinn
  1. Evelyn says:

    I could not finish reading this as I am raising two kids who fit the description of the broken chord…My heart breaks for my kids…I advocate till I can’t stand up straight…I love my kids

  2. Nancy says:

    This is an excellent article, Terry. You have found a very real way to express what life is like for the FASD affected individual. Thanks, Nancy

  3. twinsmom says:

    Thanks for telling the story from their perspective. So often as a parent I am thinking about how my child’s life is effecting me, how I must change to help my child, and how much my life has been turned upside down. It is good to be reminded of how my child is experiencing the world.

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