Miggy: Inga! Hi and thank you so much for participating in our special needs spotlight today. As mentioned you are a single mom of 4 adopted children--wow! I'm already in awe of you. In addition two of your children have fetal alcohol spectrum disorder. First, can you educate us a little bit about this condition? I know this happens when a mother drinks during pregnancy, but beyond that I don't really know anything. How much does a mother have to drink to affect her child? What are some of the hallmarks of this condition and what sort of treatments or therapies are used to help affected children?
Inga: FASD is an umbrella term covering several conditions related to a mother's consumption of alcohol during pregnancy. These terms include Fetal alcohol syndrome, fetal alcohol effects, alcohol related neuro-developmental disorder, partial fetal alcohol spectrum, and a few others. Doctors look at 4 areas when trying to reach a diagnosis: a pattern of small growth, below the 25th percentile, facial features, such as small, close-set eyes, a "ski-jump" nose, flat features, especially a flat space between the nose and mouth; cognitive delays or memory issues, and known alcohol exposure in utero. There is a misconception in the public that only women with alcohol addictions have babies with FASD. This is simply untrue. FASD is actually more common than Down Syndrome or autism. In North America, about 1% of people have an FASD, but many of these are undiagnosed. The information I want to stress is that there is no safe amount of alcohol to consume during pregnancy. Just one drink a day puts a baby at risk, and just one incident of binge drinking in early pregnancy also poses a risk. Binge drinking is considered to be 5 or more drinks on one occasion.
Miggy: As you said, you have two children affected by this disorder and since it's a spectrum disorder I'm assuming they each have different challenges. Can you explain how your children's needs differ and how they affect your day-to-day life?
Inga: FASD has a range of symptoms, but some of the most common are extreme impulsivity (act first, think later, or not!), an inability to comprehend danger, and an inability to understand cause and effect. This is the child who will always touch something hot, no matter how many times he's been burned, or climb to your roof and jump off just because it looks fun. Disciplining such a child can be very challenging, because they often have no idea why they have earned a reward, and no idea why they are receiving a consequence. Lying and stealing are also very common. People with FASD often can't distinguish between fantasy and reality, so if they want it to be true, it is true, even in the face of overwhelming evidence to the contrary. The other night, I caught my 12 yo with matches. She cried for 10 minutes, insisting that she got them out so she could put them away! Finally, we were able to discuss why it wasn't safe for her to have them, or to be lighting candles without Mama in the room.
My children are affected differently. My daughter is impulsive, and struggles to tell the truth if she thinks the truth will get her in trouble. My son has an intellectual disability (IQ below 70). This sometimes accompanies FASD, but not always. He is also impulsive, and struggles to do daily tasks. He thrives on routine, to the point of a massive fit if I cut his sandwich differently. He cannot sequence events, and can't make predictions about even the simplest things. If he is getting dressed, and can't find socks, he will come out of his room naked, screaming that he can't get dressed. It is truly incomprehensible to him that he could get dressed without socks and then go look for them.
Miggy: What are the biggest worries you face for your children?
Inga: My biggest worry for my daughter is addiction and early pregnancy. Seventy percent of girls with FASD have an addiction issue at some point. Early pregnancy is even more common than that, and frequently results in their children going into foster care. I believe she will be able to parent some day, if I can get her to wait until she is really ready. My concerns for my son are that he will never be able to live on his own. Adults with his intellectual disability sometimes live alone, but many live in group homes. I also fear he will not be able to be married or to parent. I am trying to maintain the attitude that I will do my best to give him the skills he needs, and then if he needs a group home, to be accepting of that. It's hard, but I am trying.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Inga: You asked for a funny situation. We laugh a lot. One day, I went downstairs to look for something, and came back empty-handed. I went down again, and still came back with nothing. I had forgotten what I was looking for. My daughter grinned at me and said, "Mama, maybe YOU have holes in your brain!" We collapsed in giggles.
Miggy: How can people best approach or respond to your children? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Inga: My kids appear normal, so their behaviour is often misinterpreted as defiance or rudeness. I wish people recognized that they are still disabled, and would just show patience.
Miggy: If you could talk to birth moms who are drinking or considering drinking during their pregnancy, what would you say? Is there any advice you would give a person who is considering adopting a child with fetal alcohol spectrum disorder?
Inga: I would counsel women to avoid alcohol completely during pregnancy, but my advice goes further than that. If you are planning on trying to conceive, it is best to abstain during that period, too. Many women don't realize they are pregnant for several weeks, but permanent brain damage can be done in those early weeks. Occupational therapy, speech therapy, and educational supports can help, but there isn't a cure for FASD. The secondary disabilities for adults with FASD include chronic unemployment, homelessness, jail for boys, prostitution for girls, and addictions for both. Homelessness is a big issue because many people can't budget their money well enough to pay rent, and can't grasp that if they don't pay rent, they can't stay.
Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Inga: The biggest lesson I have learned is that I can't change what happened to them before they were born. I can only do my best for them, and leave the results to God.
Hey guys! The spotlight is back! Hopefully it will be on a consistent basis, but if not please be patient with me...I'm still getting my sea legs here.
Thank you so much Inga for participating today and educating us about fetal alcohol syndrome--such an important message. I had no idea how far reaching the consequences of FASD can be and how common it is... honestly I'm sure a lot of people don't so this is really wonderful and important information. I am so glad your kids have a wonderful mom who choose to be their mom and who will help them live up to their potential. You're an inspiring woman Inga! Best to you and your family.
Friends! Please help me get the spotlight back up and running! If you or someone you know would like to participate please email me, or have them email me directly, at thislittlemiggy at gmail dot com with "spotlight" in the subject line. Also, if you emailed me in the past I'm still trying to get around to emailing you all again...so please be patient, or better yet send me another email letting me know you're still interested. Thanks!
Have a fantastic weekend.