[cnn-photo-caption image= http://i2.cdn.turner.com/cnn/2009/images/10/19/art.morasha.jpg
caption=”Morasha Winokur, 11, is the author of ‘My Invisible World.'”]
Morasha’s mother describes her daughter as “an old soul.” She’s 11 years old but has the sharp sense of awareness and honesty of someone many times her age. In her new book, “My Invisible World – Life with a Brother, His Disability and His Service Dog,” Morasha discusses a rarely talked about condition, Fetal Alcohol Syndrome (FAS).
Morasha and her brother Iyal were both adopted from different Russian orphanages when they were babies. When Iyal was 4 years old, he was diagnosed with FAS. The disorder, along with its similar conditions, affects 1 out of 100 infants each year. That’s more than autism, Down syndrome, cerebral palsy, cystic fibrosis, spina bifida and sudden infant death syndrome combined. Growing up with Iyal has been challenging, dealing with his outbursts and behavioral issues. To help make it easier, the family brought home an FAS-trained dog named Chancer, the first-ever in the U.S.
Morasha’s uses her book to blatantly and poignantly express what her life is like having someone with FAS in the family. With her youthful voice, she has raised awareness for FAS and touched other families who are going through the same thing. She writes, “When my mother and I go out shopping, I usually get asked, ‘What’s the matter?’ because people think something is wrong with me. They just can’t get it into their head that it’s okay for people to all be different and some people need to wear glasses, or use a wheelchair for better abilities. I reply, ‘Nothing, the service dog is for my brother, but we just wanted to take him for a walk. My brother is not here right now.’ The person who asks that question responds, ‘Oh,’ or nothing at all and turns away. I get that a lot. It’s really quite annoying.’”
Update: Watch the CNN.com Live interview
Keep smiling; being kind to your brother and most of all to yourself.
Not knowing how to act towards the unexpected leads to people act in different ways.
Chin up. You seem to be doing great.
Morasha I think it’s wonderful that you are helping to bring this greater awareness to the public. Far too few people out there in the “outside world” fail to understand things like this– and the outcome is that those of us who live with people who suffer from issues like these suffer the brunt of the misunderstanding and isolation as a result. Our family lost its social life, and many friends as well, as a result of our difficulties in dealing with the affected kids in our household. Even many professionals lack sufficient knowledge. Our family adopted TWO kids who are siblings from overseas, and both of them suffer from fetal alcohol issues, PTSD, other anxiety based issues, ADHD/ADD, and many other things which are often “comorbid”… and it’s often had shattering effects upon the rest of our family. It’s even put our marriage at risk. Outsiders are quick to blame us instead of understanding why we must parent these kids as we do… often we have fought for years to get support from the school system, to no avail. These children, older already when adopted, are both now in high school and it is only now, some six years later, that our school system has become more responsive to our requests for evaluations and possible supports. Such things as IEP’s should have been put into place immediately when they were first here, attending elementary school– but the district fought us at every turn. It should not have to take YEARS to be able to access the kinds of helps, supports, accommodations, that children like ours need in order to better reap the benefits of our educational system.
Every person like you who shares a window into what it’s like to live with a family member who suffers from issues like these– brings our country a little bit closer to being a place where people “get it” instead of pointing fingers or turning away. Perhaps in the future it will not be quite as painful and lonely for parents and family members, as it has been for us. THANK YOU for your courage and generousity of heart in sharing your story.
oops, that should have read
“far too few people out there… MANAGE to understand things like this”
You are an amazing young lady. Keep up the great work! What plans do you have for the future?
It is a pleasure for me to learn about such a couragous young lady. I want to encourage you to continue to write books. I started writing 3 years age at the age of 78. I have written 3 books and I have not completed them.
I am not through as you are beginning, and I am ending. So Keep up your writing.
I had dyslexics and I did not learn to read until I was 38 years old, So never let any thing get into your way in writing. The Lord Jesus will bless you every day of your life. He promises a long life for his children. Love Larry T Amarillo, TX
We adopted our son Michael when he was a newborn. He wasn’t a happy baby which made us very sad. When he was six, the doctors diagnosed him with FAS. We adopted another child a few years later, named Sarah. She is a lot like you because she loves her brother so much. Even though she is younger than him, she feels it’s her job to take care of him which isn’t always a good thing for a younger sister. But Michael has taught Sarah to be a loving and kind human being. Like you! Sarah is now 19 and has decided to become a social worker. I know it’s because having a brother with FAS has opened her eyes to the world. Michael is very lucky to have Sarah as a sister like Lyal is to have you. I’m so glad you are writing about your family. It’s such a good way to share your feelings and turn problems into something good. I bet your mom and dad are really proud of you. Just make sure to take care of yourself like you are your brother. But I don’t have to tell you that. You’re already doing that, aren’t you.
Linda from Toronto
Where can I get a copy of your book? It sounds so interesting. Thanks for writing it.
You are probably the coolest kid I have heard of. What your doing is great. I have always wanted to write a book and you have one out and you were 11 years old. I think thats awesome!
Hey Morasha! It’s Allison! Wow it’s so cool knowing a famous person! I’m so proud of you, I know that you’ve probably heard that a lot but thats only because it’s true. Have fun doing the interveiw!
I have known your family for many years and think they’re terrific and now they have wonderful You. How great!
You may not remember me, but I worked in the library at your elementary school. It was a pleasure watching your reading skills get stronger, and now it’s so exciting to see that you have written your own book. And the fact that you have written your book about such an important topic is terrific!! I am a librarian at a school in Florida now, and I’ll have to look up your book so I can order it for our library. Keep writing, keep reading, and keep being the wonderful young lady you are! I’m very proud of you, Morasha.
Morasha, It warms my heart to know of your efforts in bringing such an important subject as FAS to light in your book. All families deal with something. It is wonderful that your book will help so many! Young leaders like you are hard to find in this world. Stay humble and you will go as far as your dreams can take you. Blessings to you, Iyal and the rest of your family.
What do you think you may want to write about next?
Thank you all for your support and kind words. If you want to order the book, you can just go to our website. It’s http://www.thechancerchronicles.com. You can read some other things about Chancer and FASDs and also see a greata video that the CDC made about our family. Thanks again, Morasha.