All I hear is blah,blah, blah!

By Ann Kagarise

There are experts and there are experts. I don’t have a degree in genetics. I don’t have a PhD in anything. In fact, I don’t understand a lot of what goes on around me without an interpreter. What makes me an expert? My mom drank when she was pregnant with me. I might not understand the brain, but I am still an expert. I have lived with this FASD brain for over 40 years.

I look like the average adult. I have blonde hair and blue eyes. No one would notice anything different about me just by looking at me. Most of what is wrong with me, people can’t see. Unseen things are hard to understand. I know that one first hand.

When I was first adopted as a baby, I was diagnosed as failure to thrive. My toddler years were spent in constant struggle and by the time I hit kindergarten, there was something noticeably wrong. My teacher contacted my adoptive parents and told them I needed testing. FASD was not a diagnosis back then, but the neurologist had bad news. He informed them I had significant brain damage and I would not even graduate high school.

Struggling was all I knew. If I was going to do what the other kids were doing, I simply had to find a creative way to make it happen. Struggling was more than everyday life. It was every moment life. I couldn’t see words like other kids. My eyes did not converge and I had no depth perception. So, I saw two of everything and the world was flat. Yes, Christopher Columbus, the world is flat…to some.

I couldn’t cut like other kids. Scissors and buttons have never been my friends. I knew if I was going to make it in this world two things had to happen.

Number one – I became the most determined kid in the school. I might have gotten C’s, but they were C’s I earned. I learned how to learn. I adjusted. My life has been a continuous Thomas Edison quote. When he was inventing the lightbulb, he said, “I have not failed. I have found 10,000 ways that won’t work.”
Well, we all know what lights the room at night.

I know what it feels like when everyone in the room knows you are struggling. They told me I would not graduate high school. I got a master’s degree. They told me I would never hit a ball. I practiced hours until I was hitting home runs.

I know there is a lot I am not able to do. Sometimes, that’s hard for me to accept. Sometimes, I blow up in frustration, but I blow up because I care. I blow up because I want to do things on my own as much as my loved ones want me to. I want to understand the world around me as much as everyone else does. I really don’t want to have to look to others to interpret. I want so badly to understand what everybody else understands, BUT, I have to accept that I have to incorporate help in order for me to be my best.

The second thing – I CAN LIVE with FASD. I might not be able to ever figure out my bank account, but I have an external brain that knows how. I might not be able to hear everything that is said, but if one of my interpreters is not there, I can always turn on my tape recorder and play it back later to get all that was said. I might have to rewind a few times to catch all the words because of auditory processing disorder, but I learned a way to beat my own brain.

I found my passions. Sure, there are so many things that people with FASD cannot do, but there is plenty they CAN do. I found I am not the best verbal communicator, but I can write. I love photography. I became a professional writer and photographer. I was a journalist/columnist for almost a decade, wrote a nonfiction book, just finished my first novel and have online photo galleries.

Hopes and dreams don’t have to be gone when a person is diagnosed with FASD, they just have to be different.

Call To Action:  What are some strengths your loved ones living with Fetal Alcohol have?

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20 comments

  1. Very well written it does help so much to hear success stories. We were told also our boys who are 4, 6 and 8 would not graduate high school at first we believed that but two of our three are very intelligent. Our 6 year old struggles more but he is learning and doing better than we expected. One day I hope they can all write about getting their Masters in anything! We will be happy if each one of them reaches their own potential. I am impressed at your determination. I have dyslexia it is pretty sever and I was not diagnosed in school, I also had to learn how to read by myself the words jumped around on me. I didn’t know until I was an adult but the one blessing from that was when my daughter had it too I was able to help her. She was like you and would study for days for one test, it took so much more for her but she did it. Her sister just flew through high school. It seemed a bit unfair but that is part of life. I just pray my sons can find that drive along the way too. Thank you for sharing this, it helps more than you know.. Sherry

  2. Thanks so much for your posting, Ann. Our daughter is 9 1/2 years old. Her passions are animals, reading and photography. She is the most loving person I have ever met. I hope she grows up to be able to use her passions every day in life. 🙂

  3. I’m in tears, thank you for sharing your life so openly. I have an amazing, wonderful 15 year old daughter, who lives with FASD. We found out after she was born that her birthmom had drank heavily the first five months of her pregnancy. When she began kindergarten, she weighed 26 lbs, a failure to thrive child as well. She fights tooth and nail as have you to beat the odds. We were called into the principals office last term, her first year in highschool and were told she would never pass her math exam, and that we should consider putting her into a remedial type math class, one that would not give her a credit that would be accepted by colleges. We were told children with mulitple exceptionalities don’t graduate high school…….. she passed her exam. God willing she’ll have a germ of your determination and passionately persue a future. Interestingly enough, she’s wild about photography! She’s at school right now, but later this evening, I’m going to direct her your post. So often we hear about how the jails and prisons are full of FASD people, we need to hear successes and I know there are so many more of us out there, needing to know that our kids can succeed. Thanks for the hope!

  4. Thanks for sharing your story. I would love to learn more from you. We adopted our daughter from Russia and she was diagnosed with FASD 2 years ago. She is 10 now and is just now learning to read. She has extreme problems with math. She is the most loving child too; as a matter of fact, we were told she’s too loving.?…? I was told she may never graduate high school; told she may never leave our care. I don’t believe any of that.

  5. I cannot tell you how much these posts mean to me. I am so overjoyed to offer hope. People with FASD have so much potential. Follow passions with determination is the way to beat this disability.

  6. my poor little damaged angel…my granddaughter madison…has struggled in school, but has learned that she can draw…her art work is exceptional, so I have great faith that she will be able to succeed. She doesn’t think the same way as others but she does feel the same…her feelings get hurt…she cries when she thinks her mom doesn’t love her…even though she knows it was her mom who damaged her brain…she is very compassionate of others feelings and always wants to comfort others who are hurting.

  7. My son also works so hard! He had a teacher who once told me that she never saw a student work so hard on math – and still get it wrong.

  8. My adopted son is 16 1/2. In addition to ARND, he is bi-polar and has been described as mildly mentally retarded. He is also an extremely talented artist. He paints and draws and currently has an exhibit at a local restaurant, and people have eagerly bought his work.
    (I guess I’m his external Art Brain, as being an artist myself, I know how to
    prepare & hang work for an exhibit:)

    Thanks for sharing your story with us.

  9. I just found this website today and yours was the first post I read. I’m an adoption worker for the longest waiting (and subsequently hardest to place) kids in foster care.
    Many of my children are diagnosed with FASD, and it can be a real challenge to find an adoptive family for them, especially with all the negative info out there. I’m so happy to have a positive website (and article!) to send them to! My kids are amazingly wonderful, and need someone who can see their potential and help them strive to achieve despite what the “experts” may say.

  10. I was so happy to read your post. We have an 8 year old boy we adopted and we are waiting for the formal diagnosis but have been told that he has FASD. He can be such a funny little boy on his good days. His bad days are terrible and he is filled with anger. Reading your post gave me hope that one day we will be able to help him past the anger and help him fulfill whatever dreams he has. We are struggling to get the school onboard with special requirements that our son needs. He CAN learn. He is in grade two and is reading at that level, he is a whiz in math, he can do it, he just needs a little extra help and a lot of structure. Reading what you have done with your life gives me the hope that every fight I have with the school will be worth it. Thank you.

  11. Hi!
    Nice blog you have here. I wish you all the success. I can’t even imagine all the struggle you must face every day. I am like you. Those 3 letters are my daily companion as well, but like you, I have found my ways to do things. Take it one day at a time. It’s the best thing you can do.

  12. Ann, Your blog is inspiring…did you struggle with daily meltdowns and rages? Our 11 yr old daughter seems to fall apart at every little thing. We are going to try a sticker reward chart to reinforce more positive behavior, but what if that is not successful? We are at a loss as to how to make our days , and hers, more liveable and less frustrating. I know some FASD kids need medication to help with behavior issues, but she is already on meds for epilepsy and ADHD. Any input would be great.

  13. It’s so inspiring to hear your story. Even though I don’t know you, I caught myself feeling love and pride for you as if you were my own. My two boys are in their teens, diagnosed as toddlers. They are now facing the most difficult time of their lives. It is so hard to make people understand their invisible disability. Schools, law enforcement…everyone, should be better informed and more understanding. They are doing amazingly well inspite of their challenges but a little part of me always wonders if they can really make it in this unaccepting world. I’m glad to have found this web site with so much positive information and hope. Thank you Ann.

  14. I am the mom of a 33 year old FASD and I think we are getting it right. When we started no one had heard of FASD and we fumbled a lot of years on our own. We have learned so much and I would love to share with anyone. How do I get started sharing and perhaps helping others?

  15. I love this blog of yours. Your story is so inspiring. Our daughter came into our home at 4 who is now just over 8 and has FASD. Every day is a struggle. The anger, meltdowns, and screaming is very hard and not have any family or friends with similar experience we are trudging along on our own. I swear I only ever hear the negative about teens and young adults with FASD. I am so worried for my daughter. But your story is so heart warming and give me so much courage. Reading your story better helps me understand what is going on inside my daughters brain and I am truly appreciate of your story. Thank you so much for sharing.

  16. To Mr. Noble my name is Barbara Hernandez We live in Lakeland Fla I have raised 3 of these children all three were fetal alcohol syndrom and we adopted the 3 the birth mother was on herione crack meth and the littlest one was born in jail hospital in phoenix az the birth mother was on 65 mgs of methadone while she was inutero for 5 to 6 months then when she born put on phenobarbital i was present in the day she was born. she does good in somethings she is 18 now .i was also on the list fas for about 8yrs grands list also I also have horse back riding at my house for for her but have no medical evidence except that any a lot people have said it and they are pros in thier flield also you in put on this and anyone else would be greatly appreciated or call 863 937 9549 THANK YOU MERRY CHRISTMAS TO ALL OF YOU

  17. Amazing post! I am super grateful to anyone who writes about FASD with knowledge as an insider. This is brilliant and I will share it because too many of our kids and families live in a place where there is rarely hope and all too often just exhaustion, frustration and failure. How remarkable that you have a Master’s degree. I have two girls – we are a family by adoption. We have one diagnosed with FASD here and another who although incredibly bright and creative also has anxiety and a lot of executive functioning gaps. They are both incredibly bright and they have massive potential as many of our kids do. It’s finding that strength and polishing it that is the key. It’s also finding that strength and helping them navigate education which is a minefield. Thanks for sharing this hopeful story.

  18. Hi Ann:
    I’m glad to see one more success story. I appreciate your determination to succeed at a time when FASD was not recognized, you reached 40 and can tell us how you did it congratulations. You are among a few successful lives we are able to learn from. Your encouragement will help our kids grow a little freer knowing their survival depends on their determination and the network they can create, to help them succeed. Thanks for telling your story, can’t wait to talk with you tomorrow.
    Ethel St. Thomas ON


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