Fetal Alcohol Spectrum Disorder 101

Education & Support

WELCOME

We are so glad you found us and invite you to come back again with your family and friends as we plan to add new information as often as we are able.  

We hope that this site will help you to understand Fetal Alcohol Spectrum Disorder (FASD) and give you tools to help your children, or simply understand those families who are dealing with this type of birth defect.  Its hard living with a child(ren) effected by FASD, instead of judging the family, try and learn what you can about the disability and be a support to them.  Start by reading this http://come-over.to/FAS/FASFallout.htm

And if you are finding it hard to work outside the home because of the time our children need, I may have a solution for you at "Mom Team Careers".

We don't claim to be the experts in this field nor is this site exhaustive. But we have read and researched quite a bit of information to help our children (click on Books & Resources) and wanted to pass this information along to you. It is our hope that the compilation of information on this site will make your learning about FASD easier than it was for us.

We have started a support group (in Hanford, CA) for parents or caregivers of children effected by FASD. If you are interested in this support group, please fill out a form  under "Support Group Sign Up". You are welcome to check out the "Events Calendar" page for a listing of group and training times. 

Further, it is our desire to educate others about the effects that alcohol consumption can have on unborn babies. That drinking even one drink during pregnancy can cause irreversible brain damage.

If you want to contact us, our e-mail address is FASD101@sbcglobal.net

With knowledge comes the power to press on to the goal set before us. And that goal is to help our children be the best they can be.

 

Fetal Alcohol Spectrum Disorder (overview)

FASD (Fetal Alcohol Spectrum Disorder) is not a medical diagnostic term, but an umbrella term that refers to the range of neurological disfunctions that can affect a child who has been exposed to alcohol in the womb.  There are many factors that play a part to the severity of damage and types of impairments the child can experience, including but not limited to how much and  when the mother drank during her pregnancy.  Research is still underway as to what damage,  if any,  that the fathers alcohol consumption may cause.

In 1973, FASD was first referred to as Fetal Alcohol Syndrome (FAS) by K.L. Jones and D.W. Smith. 

In order for the child to receive an FAS diagnosis
, they have to meet the following criteria:
     1. Distinct pattern of Facial Features (smooth philtrum, thin vermillion, and small palpebral fissures)
     2.
Central Nervous System Disorders 
     3.
Overall Growth deficits, usually in the 10th percentile

Since that time, doctors have come to realize that many
of the children with a maternal history of prenatal alcohol exposure often do not meet the diagnostic criteria of FAS but still displayed some of the characteristics, especially behavioral and neurological. This does not mean that the disability is any less than FAS, just not as visable. The following are the other diagnostic labels:

FAE        Fetal Alcohol Effects
ARND    Alcohol Related Neurodevelopmental Disorder
PFAS      Partial Fetal Alcohol Syndrome
PAE        Prenatal alcohol exposure
                Static Encephalopathy



Children with FASD can display symptoms of ADHD, Autism, Asperger Syndrome, Tourette's Syndrome, Epilepsy, Mental Retardation and various psychiatric disorders, but will often not respond to traditional treatments for those disabilities. Many have IQ's in the normal range, but struggle academically. They become socially arrested and need support and training to respond appropriately. They are often used and abused by peers and have trouble with the law. (Ann Streissguth "Overcoming Secondary Disabilities") Other symptoms click here

Our Story

Michael and Nora Hofmans
  We have been married since the year 2000. We met at church and became great friends.  Michael is quiet and thinks before he talks and is usually slow to make decisions. Nora has a big mouth, and should think more before she talks and usually makes quick decisions (but still thought out ones). Thankfully, God knew Nora needed a patient husband, and Michael is very patient.
  Michael just changed from his truck driving job of 6+ yrs  so that he could be more involved with the boys, especially since we plan on expanding our family. He is now working for Hofmans' Nursery in Hanford. Nora is a stay at home mom,  and homeschools the boys year round. She also has a small business preparing taxes and keeping books.
  We have 5 children so far. Nora's biological daughter, Brandi (1985) who is married to Leonel and they have our first  wonderful grandson. Then we have our sibling boys that we adopted from Russia in 2005. They are born in 1997 (FAS) and 1998 (FASD), and two other boys born 2001 (FASD) and 2007 (FAS).  We hope to expand our family tree by adding more boys effected with FASD.
  According to our county and State license, we are maxed out on how many more children we can take. But as soon as the Lord will allow, we hope to move into a bigger home that will accommodate at least another 4 to give us a total of 8+ boys. 

  Our support group and training has been on hold for awhile, but I am willing to talk with and do individual training if you are interested. Please e-mail me at fasd101@sbcglobal.net.

We are interested in providing long term residential housing for our boys and be an outreach for others. We have plans for their future to help them be as successful as they can be and give them a sense of independence, yet provide them with the support and structure that they will need. Our long term goals is to start a few small businesses that the boys will run and work (this will give them the success they need as men) and provide special housing and supports for them so they can feel like they are in charge of their own lives.
  Just in case your reading this and thinking it's been a piece of cake. This has NOT been an easy journey. We did NOT know the boys had FASD or what that meant.  The boys were wild and crazy when we adopted them. They screamed and had violent tantrums for several hours at a time. We had to hold them during this time as they would hurt themselves and others. We could not let them out of our site or leave a door open or let go of their hands in public or they would run away wildly without caution to their surroundings. We wanted to give up!!! But we kept going.  Educated ourselves and realized that when we were told in Russia that the boys had Static Encephalpathy (they said all kids in Russia have this and it's nothing) it meant brain damage which was caused by prenatal exposure to alcohol. We changed our parenting (still learning and changing) and the boys are doing much better. In our opinion, a highly SUPERVISED, STRUCTURED, SAFE environment is a MUST!! And surround yourself with good friends and family who try to understand and support you.

  I hope you are able to utilize this site and all the links. The more you learn, the better off you will be in understanding yourself and your child(ren). And I look forward to meeting you in person at a future support meeting.

Jim & Darlene Kelly
In September of 2009, we will have been married for 27 years. Jim is a correctional officer as well as a bicycle shop owner. Darlene is a stay at home mom. We are the 
parents  of four children. Three are our biological children and the fourth is our nephew whom we adopted when he was seven.Our three older children are grown now and our youngest is 10. Darlene has home educated and graduated the oldest three and is currently home educating the youngest.           

Our 10 year old was diagnosed with FAS in August of 2006. Sam came to live with us the first time when he was just 18 months old. We had him for just about a month and then he returned to his biological dad. At 5 1/2 years of age, Sam came to live with us again in a foster care setting. He had been removed from his biological dad's care for neglect. Sam was exposed to alcohol and cigarette smoke in utero. It became apparent to us after just a short time of him living with us that there were some problems. We have come to learn that  a child with FAS is very visible while his disability is very invisible. Such is the case with Sam. Although he "appears" normal for all intent and purposes, he is unable to respond to life as would be expected. Our adoption of Sam was final in November of 2004, just before Sam turned seven.  

Our true hearts desire is to be a support for families and children with this same disability. There is so little help available from the medical community. The Hofmans' and Kelly's have done online research and read many books, articles, papers, etc in hopes of educating ourselves. We would like to make ourselves and our findings available to those who are interested. We are not in any way claiming to know all there is to know or in any way diagnose a problem. We are just willing to share with others what we have found in our own homes to work with our children.

Please be encouraged to know you are not alone in this journey you are on. It is a constant and difficult one, but worth the effort. Intervention may be the key that unlocks the mystery behind your child's issues. 

Contact Us

If you have any questions or comments, please contact us by e-mail at FASD101@sbcglobal.net .
We will do our best to help you, even if it's just an understanding ear.
      
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Disclaimer: This web site provides information about Fetal Alcohol Spectrum Disorders (FASD) and is not medical advice. If you need medical advice about alcohol use and or FASD, please seek that advice from a trained specialist or physician.  FASD101 is not liable for any loss or risk incurred as a result of information shared on this web site.
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