If you're looking for the Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) you have come to the right place. We have some exciting news about our organization. We have a new name! MOFAS has officially been renamed Proof Alliance. Our mission remains the same: to prevent prenatal alcohol exposure and to improve the quality of life for people living with fetal alcohol spectrum disorders (FASD).
We now have the proof that prenatal alcohol exposure is a leading cause of brain injury in children. We have the proof that FASD is 100% preventable and people living with an FASD can reach 100% of their potential.
We seek to build powerful alliances with people with an FASD, their families, legislators, experts in the field, new partners, and community members to bring awareness, research, and services to this field.
Proof Alliance is rebranding, expanding, and we're moving! We have a new logo, website, and prevention campaign to help change the norms around drinking during pregnancy. And in May 2019 we will be moving to a stand-alone building. Proof Alliance commits to the people of Minnesota and we will continue to develop transformative programs to help Minnesotans impacted by FASD.
By: Lisa Friesenhahn
I spoke to some pregnant teens this past year and wrote down things I wanted to cover. I know this is kind of long but it’s my story and my message and I think all of us who have someone in our family affected by FASD can share and educate in many different settings formal or informal.
A little about my family story:
My husband and I have 2 children by birth and 4 through adoption.
We became Foster Parents to help out children and families in need until they could get the help they needed to be reunited with their families and be healthy, safe, and successful. Unfortunately, that doesn’t always happen and sometimes children cannot return to their parents due to the circumstances. Our adoption story starts when we took a 2 year old boy into placement and his birth mom could not stay ‘clean’ from drugs and alcohol. She ended up having 3 more children over a period of 5 more years. We took those children into our home also. We felt that keeping these siblings together would be a blessing to them since they would have that biological connection.
All of my children bring great joy into our lives. They are adorable, funny, loving, motivated, caring, and energetic children. I wouldn’t trade my decision for choosing to be their ‘forever’ mom for anything in the world but there has been some adjustments and sacrifices.
I am an RN who has worked in hospital, clinic, transitional care unit, and school district settings for over 20 years. After taking on my extra kiddo’s, I needed to be home full-time to meet their needs so I put my career on hold. What I didn’t know was that my career and life passion of helping others would take a different turn. I’m still using my knowledge but now it is to help my children.
My children’s history: All four of my adopted children were exposed to nicotine, cocaine, methamphetamine’s, marijuana, and alcohol during pregnancy. The choice of their birth mom to use these substances while pregnant has created birth defects on the children that are both visible and invisible. I can’t fix these things and the reality is, the birth defects are 100% preventable. Had she chose not to use these substances during her pregnancies, my children wouldn’t have these challenges. I am not judging her, I just wish, for my children’s sake, that things would have been different.
When I was pregnant with my first child, the OB doctor told me it was OK to have a beer or wine occasionally. That was in the ‘90s and even then there was information saying drinking during pregnancy may cause birth defects. I did not drink during my pregnancies since I didn’t want to take a chance that I could cause my child any harm. “Why take the chance?” is what I said to my doctor.
So you may be wondering, what types of problems do my children have that WERE exposed to alcohol during pregnancy?
Many different things. They are diagnosed with FASD, which means fetal alcohol spectrum disorder. It is a term used to describe an individual who has been exposed to alcohol during pregnancy and shows physical, cognitive, and behavioral characteristics known to be directly related to the mother’s use of alcohol during pregnancy. My kids all had a complete physical and neuropsychological workup at a clinic at the U of M campus that is specific for diagnosing FASD.
It may sound like a rare disorder but there are about 8,500 babies born every year with prenatal alcohol exposure. Nationally, FASD affects about 1 in every 100 live births.
So back to how my children were affected, it may be easiest for me to describe one child at a time since all 4 children present different issues.
My 11 yr old:
When he came to us, he was only 2 yrs old.
He had a significantly noticeable severe bowed leg deformity which thankfully corrected itself with good nutrition and exercise. He did have to see an orthopedic specialist for evaluation to rule out need for casts or braces or any further treatment.
His initial behavior upon arrival to our home showed signs similar to those seen in a child who is autistic. He would do repetitive behaviors like crawling on the floor like a caged animal (even though he was able to walk) and he would take his socks off, twirl them in front of his face, and stare at them for hours. He never responded to his name when we called him and he rarely made eye contact. These things subsided once we were able to engage him in more social activities and he became comfortable interacting with others.
Initially, he would have raging tantrums where I would have to keep him physically safe from harming himself or others. They would last quite awhile and I’ve heard from other parents some of their children diagnosed with an FASD can tantrum for hours.
He needed ear tubes for recurrent ear infections which had been an ongoing problem since birth.
His biggest issue now, I feel, is how his ‘thinking’ brain was affected by alcohol exposure. He is impulsive, hyperactive, has no sense of danger, no fear of strangers, no sense of what is right or wrong, lacks what many people call ‘common sense.’ These things put him at risk of making bad choices, getting into trouble, or becoming vulnerable or becoming victimized. He doesn’t seem to learn from mistakes and he never quite understands that his actions will cause consequences. For example, “If I steal pencils from the school bookfair, I could get into trouble for taking something I didn’t pay for.” He can’t seem to keep things clear or make sense of situations and gets things really jumbled up. I see him looking confused a lot and he just doesn’t learn as easily as a typical child does.
This is part of what alcohol does to the brain of the developing fetus while you’re pregnant. It damages the ability to ‘think clearly.’ He has poor problem solving skills, often blames others for his mistakes. He defies adult-led direction and often argues with adults. He gets angry easily and is easily annoyed by others. He interrupts/intrudes/blurts out. He lies about the obvious… for example, he told his church group that his Dad (my husband) is Joe Mauer. Just to clarify, I’m not married to Joe Mauer from the Twins! He also lies when it would be easy to tell the truth. We watched him on our home monitor system hitting his sister, I had him watch the tape when I rewound it and I asked him what he saw. He replied “me hitting Susie.” I responded with, “so you hit Susie.” He followed up with, “No, I didn’t hit her.” What?! When you are ‘caught on tape’ so to speak, you might as well come clean. Not my boy, he STILL denied it.
Organization or lack of it is another problem of his. He loses everything even if I get him set up, organized, and so on. His teachers have to have someone help him stay organized at school such as cleaning out his desk for him, helping him clean out his locker, etc. One thought comes to mind, “If his head wasn’t attached…” Well, you get the idea!
He gets resentful often too. He feels as if ‘That’s not fair.’ ‘Poor me.’ And when the pity party starts, we have to point out that he has to learn that not everything will go his way, all the time, for the rest of his life.
Sometimes, we see that one day he remembers how to do something, the next day “poof”, it’s gone and he has to relearn it. It truly is heartbreaking.
My 8 yr old:
She came to us as a 3 day old infant. She had feeding problems, Gastroesophageal Reflux disorder and was on special medication and special formula. She was diagnosed with asthma and in her first 4 years of life required a great deal of nebulizer treatments to help her breath. She saw a respiratory specialist for this. She was also diagnosed with a heart murmur which was evaluated by a cardiologist, a heart specialist.
She has similar behavioral characteristics as a child with ADHD, attention deficit hyperactivity disorder, which many of you have probably heard of. And children with Fetal Alcohol Syndrome are often diagnosed with this as well. She is impulsive, in everyone’s face and space (no concept of personal boundaries). We’ve all known someone who gets into our personal bubble and we tend to back away, she is one of those ‘in your bubble’ people.
She has mood switches from happy one second to angry and screaming the next. This mood roller coaster she’s on makes it hard for her and hard for those around her. Sometimes calming her down becomes a challenge and for her to calm herself down is asking for a miracle.
Academically she is smart but very scattered. By that I mean, she has difficulties staying on task, focusing on something so that she can see it to completion can at times be next to impossible. Staying in her seat long enough to finish her project, to eat, or to listen to what you are telling her is an expectation that she cannot often comply with.
She can be very determined, in other words, bossy or stubborn. These qualities may work well for her if she ever is head of a company but she often thinks she’s in charge of adults and in all honesty, that doesn’t sit well with the adults that are in charge of her!
My 6 yr old:
This child came to us at birth as well.
She has had many physical problems along with the behavioral. She had open heart surgery at 3 months old. She was born with 3 holes in her heart, probably due to alcohol use by birth mom during the pregnancy. She was diagnosed with failure to thrive which means a child is not gaining or developing normally. She had difficulty sucking, difficulty swallowing, severe reflux problems where she would turn purple and need to have her nose and mouth suctioned out to breath. She was irritable and difficult to calm down in the ways most babies can be calmed by singing, rocking, stroking…these didn’t work for her. She had constant fluid in her ears and infections. She was diagnosed by a specialist with mild to moderate hearing loss and uses some devices in the classroom to help her hear. She has had ear tube surgery twice to relieve fluid in the middle ear and to help her hear. She has had a bleed in her eye and is currently wearing corrective lenses to help her with a lazy eye and other eye conditions. She has vocal cord nodules which are like callouses on her vocal cords that cannot be removed. It causes poor voice quality and sometimes she is difficult to understand. She has frequent nosebleeds which don’t stop very quickly. She is short in stature, which is common with FASD. She has some abnormal bone anomalies in her fingers that are associated with FAS, a tiny pinky finger and curvature of several fingers.
She was having some potty accidents during the day and wanting to rule out anything medical, I took her to a urology specialists and after testing her bladder and kidneys, we found out she has 3 kidneys, another probable abnormality due to alcohol exposure in utero. This condition can cause kidney damage so we have to be really careful to make sure she does not get infections which could lead to permanent kidney damage.
Learning disabilities are prevalent with her. She finds learning more challenging and difficult. She requires a great deal of one on one tutoring both at school and at home and she gets frustrated easily and wants to give up. She gets easily distracted, has a short attention span (they all do for that matter), and problems with poor coordination.
She is as cute as can be and is affectionately called Sassy Kassie for a reason. 😉
My 4 yr old:
This child is ‘on the go’, ‘motor motivated’, ‘hyperactive’ , ‘ energetic’….call it what you want, he wears us ALL out!
Now there are active 4-year-olds not exposed to drugs during pregnancy but those that were exposed have a greater tendency to be ‘off the charts’ active.
This child has struggled with being impulsive, running out of the house, running and hiding in the bushes during a preschool field trip (not answering when they called out for him), running out and going potty in the woods even though he was in the house and right next to the bathroom, jumping off the staircase, climbing high trees, disappearing into crowds, and so on.
We have him on a leash when we go to some busy public places like when we took a trip to the State Fair and to Disney World. We would have surely lost him if we didn’t keep him close to us. Even then he started clipping and removing his backpack/leash so we ended up having to put it on backwards so he didn’t have access to the clips.
This child also had hearing problems and had ear tubes placed which has improved his hearing ability. He had speech delays which all four have had and received services for. He has difficulty with learning and is delayed compared to his peers.
He has asthma and has received nebulizer treatments and sees a respiratory specialist.
He has a bone abnormality of his rib cage/sternum and has seen a specialist at Gillettes hospital for that and will return in a few months for a follow up.
These children need a great deal of one on one supervision to keep them safe. They have had trouble with large and fine motor skills-writing, lifting, jumping, biking, and so on. They often have low self esteem, trouble keeping up in school, difficulty understanding ‘appropriate’ behavior-that which is socially acceptable.
They must be reminded of basic concepts as simple as wiping their bottom after toileting, washing their hands, using a napkin while eating, or even remembering to use a fork and spoon not fingers when eating food that requires a utensil! A lot of these things we take for granted.
My children have suffered with brain damage, heart and kidney damage, facial malformations, muscle damage, bone abnormalities, teeth problems, lung damage, low birth weight, the list goes on.
So what has helped my children so far?
My children have been helped by ECSE (Early Childhood Special Education) services. All were serviced before the age of 2, one as early as 3 weeks old. The Special Education division at all school districts will do a free evaluation based on your concern/request. If your child qualifies for services, great. If they don’t and there are still concerns, they can refer you to other resources. My children all have Special Ed services and I attribute that to their school experience being as smooth as possible. They have struggles and challenges, it’s true, but with extra help, they are all able to be in a regular classroom most of the day.
They have all had Speech therapy, OT, both in school setting and private clinics.
If you have a child that may be affected, there is online support groups and information, local support groups, and lots of opportunities to learn more about how to help your child.
As their parent, I need to concentrate on their strengths and talents.
I need to be consistent with how I handle everything in their lives.
I must establish and maintain daily routines so that they know what to expect
I have to keep things simple: directions, routines
I need to be specific when I want something from them
I sometimes use visual aides (charts), music, and lots of hands-on activities to help them learn
Positive reinforcement such as praise, incentives works well
Constant supervision is always required
And, I often feel like a broken record, I repeat instructions as often as necessary which is VERY often in my home–I have a house full of Forgetful Frankies
So why do I share all of this with you?
Not to scare you or make you feel sorry for my children but to help you make the right choice during your pregnancies and for your children.
Some of you may have already drank during your pregnancies and you may feel guilty about it. With that I say, now that you have more information, you will make a different choice the next time you are offered alcohol or tempted during your pregnancy. Those of you who are pregnant now and have had drinks during your pregnancy and may be worried about your baby and how they are affected, I would say the best thing to do is to stop drinking now. The sooner a woman stops drinking alcohol during pregnancy, the better the birth outcome she will have. If you already gave birth and you did drink during the pregnancy, just keep on the lookout for signs and symptoms and if concerned, ask for help. Although admitting to using during pregnancy may make you feel ashamed, coming forward to help your child any way that you can will be seen as loving and caring. Wanting the best for your child matters most and people will see and respect that. We all make mistakes, if we can learn from them and move forward, that’s what counts. My hope for all the unborn children out there is that the message gets out to ALL moms that no amount of alcohol is safe to drink during pregnancy and if a pregnant mom is drinking, so is her baby. We wouldn’t put alcohol into our baby’s bottles, that would be silly, therefore we should not be drinking while pregnant. Again, this is the only birth defect that is known to be 100% preventable, the only birth defect that we can absolutely prevent just by our choice to not drink during pregnancy.
Thank you all for letting me talk with you today. I’m available for questions and I brought some handouts, pins, and some onesies for the little ones.
The 049 stands for zero alcohol for 9 months. My hope for all of you from here forward is healthy pregnancies and healthy babies!!
I gave out MOFAS materials which they really enjoyed, they listened intently and I pray that I may have made a difference in someone’s life by being there that day.