Lena and son Johannes

Lena was born with intellectual and developmental disabilities, including a clubfoot, malformations of her fingers, and congenital heart problems that needed several surgeries. Lena was born with these lifelong damages to her body and brain because her mother drank while she was pregnant. When Lena was one and a half years old, she was taken from her mother and was placed in the foster care system where she would live until her 21^st birthday. Contrary to how some would respond in the face of Lena’s challenges, Lena’s experiences perpetuated her spirit of happiness.

Throughout her early development and throughout grade school, Lena had a normal IQ and went to school, but had larger problems with learning and attention. Not only did Lena struggle with certain aspects of academia, but she also ran into social and emotional issues stemming from difficulties with social life. She felt like an outsider, didn’t understand social cues, couldn’t make friends, and consistently felt like an outsider. She was often teased and bullied, lending to feelings of frustration, sadness, and depression.  These internalized feelings manifested themselves into many years of self-harming behaviors, including anorexia and bulimia. In spite of the academic, social, and emotional troubles Lena experienced in school, she persevered through the educational system with the help of a few teachers. She graduated as a nursing assistant.

Lena had several attempts at a job as an adult, including a quick stint as an au pair and four years as a nursing assistant at a nursing home, but nothing ever resulted in long-term job satisfaction and success. Her work mates had too high of expectations and Lena often felt like she could not live up to their expectations or relate to them. Even if she did understand the tasks at hand, Lena would react too slowly, couldn’t keep attention, and felt like she was constantly forgetting and messing things up. Lena still struggles relating to people and finds that sometimes people can be uncomfortable around her. Her social skills have led her to troublesome situations and relationships, including emotional and physical victimization. She finds it hard to be a good judge of character and feels naïve at times. Lena says ‘I want to believe that all people are good, but they are not’.

As a single mother with FAS, parenting can be a challenge, but Lena says joy outweighs all the rest.  Her nine year old son, Johannes, understands that his mother has FAS because Lena reads him childrens books about the disability. Lena says that being a single parent is not easy for anyone and to be a single parent when you have FAS is tough. For example, helping her son with his homework is difficult. Even if she understands what he is supposed to do, she cannot explain it to him. A growing boy also needs parenting and limits. It’s hard for her to set the right limits – and to stick to them. To manage as a single parent with FAS, Lena is in need of extra help. She goes to parent education courses, which teach her how to cope and set limits. To organize herself, Lena uses step by step pictures to sequence her schedule. The parenting classes and this unique organizational method bring relief to her.

To center herself, Lena writes poetry  and pulls from the strength of God and the support of her church. She converted to Catholicism and has been on a pilgrim journey to Medjugorje, Bosnia twice. Amidst her challenges living with FAS, Lena’s life is joyous. She loves people and animals, and when her young son is in school on a more consistent basis, Lena would like to spend time outside, working with animals. Lena currently serves as a support person for people with disabilities for an online/postal Christian support group. Lena says that she likes to cook, and like most things in her life, tries to keep it simple. She is a self proclaimed social, happy, smiling person. Lena emphasizes her ability to laugh at herself and exclaims that her life is not full of many failures! She has managed to overcome many challenges in her life. She is a fighter.

Lena says ‘These journeys have changed me very much and have given me the joy of life!  Thank you for listening and God bless you all!’

My twin brother’s name is Joe Esmeyer and he also has FAS.  It is hard to think when you have FAS which does not help his life at all.  If something happened an hour ago, he probably would not remember it. His FAS also affects other people’s life too and causes a lot of stress for everyone in our family and his teachers at school. If he did not have our family to help him, he would probably not be able to function daily. He is in Special Education classes because he has FAS.  His writing is bad and he cannot write in cursive because of his motor skills. He cannot think strait and sometimes needs help at school to figure something out. He takes medication for ADHD to try to help him focus daily in life and at school. He barely has any friends at school because of FAS and gets picked on and bullied because he is small.  It is hard for him to go to bed because of his FAS and he only sleeps about 4-5 hours a night.

I belong to the International Order of the Rainbow for Girls and my brother is in the Order of DeMolay, which is a brotherhood for boys. I love singing and being in plays at school while my brother likes anime and comic books, riding his bike, break dancing, playing with our five dogs, going to our brother’s house, Yu-Gi-Oh cards, and video games. He likes to read Percy Jackson books and has read them all.

Sometimes I wish I can take a magic pill and my FAS/FASD would be gone but other times I am happy just the way I am.  I want people to know FAS/FASD is not all that bad, if you have great family and friends to support you.  I have a wonderful mother, father, big brother, sister, and sister-in-law who help me and my brother with my FAS/FASD struggles.

Thank you for reading our story.

Brianna Montgomery: Hello Elizabeth! It is such a pleasure to speak with you. I thank you for agreeing to speak with me today.

Elizabeth B.: I am happy to.

BM: Let’s get started. Tell me a little about yourself.

EB: I am currently 47-years-old and was adopted by my amazing parents when I was 5. I was diagnosed with FAS when I was 14, along with PTSD.

BM: How has having FASD affected your life?

EB: When I was younger, it definitely affected me in school in terms of having multiple learning disabilities. It made school very difficult for me. I remember my first grade teacher calling me the “R” word and that stuck with me my entire life.

BM: I’m sorry to hear that. That’s such ignorant thinking and horrible for you to have to endure.

EB: On the positive side though, my amazing mother went in to the school with her war bonnet on and said ‘how dare you say that to a child.’ She has been the biggest advocate and supporter of me for my life. If it were not for being adopted by these amazing people, I truly do not know where I would be.

BM: That’s wonderful. Family is so essential. You’ve shared with me how FASD affected you when you were younger; tell me a little bit about how it affects you now?

EB: There are physical effects to having FASD. For example, I have multiple medical issues that require daily care. I am also going deaf very quickly and we can’t find out why. I now have hearing aids. I know I will lose my hearing eventually down the road, but considering everything that I have been through in my life that is really not as big of a deal as one might expect for me. It’s just another thing on the hill that has been my life. You get on with it.

BM: I’m sorry about your hearing, but it’s admirable what a positive outlook you have on everything. You aren’t letting FASD hold you back. Other people could really learn something from you!

EB: I have had a great life, but not without many, many challenges. As a teenager I was extremely challenging for my parents and I really put them through the ringer. I was trying to figure out who I was and I was dealing with the abuse I had experienced prior to being adopted. That mixed me up emotionally a considerable amount and for many years I did not have a relationship with my parents. I felt like they didn’t understand me. It was only until I finally grew up and became a parent myself that I realized just how important parents are.

BM: It sounds like your parents, especially your mother, have been so essential in your growth. That is fantastic. Tell me a little bit about your family. I know you had mentioned that you have children.

EB: I have a life partner who I have been with for ten years. He’s an amazing, miraculous man in that he puts up with me on a daily basis. He is extremely understanding and supportive. I have five children from our blended union. My partner has three sons and I have a son and a daughter. My eldest stepson is 30-years-old with autism and he is in the process of finding a new job and a new walk in life. My second stepson is 28-years-old and he is an executive for a company. My third stepson is 24-years-old and he is on his way to college to study IT. My daughter is 24-years-old and is a budding photographer with talent beyond imagination. My son is autistic and has recently changed his coursework in high school to academic so that he can go to university.

BM: What a great family and such wonderful successes! Has having two autistic sons been challenging for you and your partner?

EB: The biggest fear that I had was that my FASD was somehow related to my son having autism. I know that FASD is not genetic, but there is guilt associated with my son having autism even though there is absolutely no way that I could control whether he has it. I never drank during my pregnancy and didn’t even take Tylenol. I was paranoid, even militant about being absolutely clean during my pregnancies. I did not want any of my issues to be passed on to my children and yet here I have a son who’s born with autism and a daughter who suffers from depression. It’s natural for a mother to wonder if there something that I did or could have done differently to change this outcome. Intellectually, I know there is nothing that I could have done differently. Emotionally, I don’t necessarily know that.

BM: I understand that with autism everything is so unknown.

EB: Having a special needs child and being someone who is considered disabled by the outward world, I think it lends you a significant amount of patience that you would not normally have to deal with the issues that come up. My patience with my son is limitless.

BM: That’s an incredible quality to have.

EB: I’m often very quick to spot other children in the community who have special needs whether it be FASD, autism or another disability because you recognize the behaviors. You recognize the behaviors in yourself or in your own child. You are more inclined to go and offer the other parent assistance when their child is melting down, instead of doing what many other parents may do and just think that the child needs to be disciplined better. That couldn’t be further from the truth.

BM: Absolutely. They need more love and care.

EB: They need more understanding. Society as a whole generally does not have much understanding when it comes to special needs children unless the special need is visible. The cruel thing about FASD and autism is that they are both invisible. You cannot recognize a difference between these children and others because there is no wheelchair, no crutches and no major deformity that would isolate them as being different.

BM: That’s so true. That’s why FASD is so difficult. Even with an “FAS face”, the disorder is invisible.

EB: If you look at the FAS face, there are traits about the face that society finds attractive. One downside that people do not consider is that with FAS you are usually a pretty good looking individual and because you are good looking society expects more from you. That is a tough burden to carry when you cannot meet the average expectations of society, let alone the extended expectations.

BM: I agree; that’s very true. I understand that you have your own service dog organization, tell me about how you got involved working with service dogs.

EB: Prior to working with service dogs, I was working on rehabilitating dogs with aggression and other behavioral issues. I did that for about twenty years. I always loved working with dogs. I preferred dogs over people because they are less judgmental and manipulative…unless you have a cookie in your pocket, then a dog will manipulate the heck out of you.

BM: Very true.

EB: Dogs are very easy to read behaviorally and you always know where you stand with them. When my son was diagnosed with autism I began to look at including dogs in to my son’s life in an extended way and I found out that they had autism service dogs. I became trained to train service dogs for people with autism and I very quickly expanded my training to include psychiatric illness, brain injury, disease and disorder, and FASD.

BM: Tell me about your organization, Thames Center Service Dogs.

EB: I started the organization when my son was diagnosed with autism and we started including other issues in to our training protocol, including FASD. We are very advocate minded in terms of our clients and our service dogs. We make sure that we are there for the duration of the service dog’s life. Once the client receives the dog, that is not the end of our involvement. We become part of their family. We are continuously there to train for any additional services that the client may need and we love every single one of our clients and our dogs. In addition to the organization, I am the person that developed the psychiatric service dog protocols for Ontario and I developed the FASD service dog protocols for Canada.

BM: It sounds like you have done a lot of amazing work. We in the FASD field along with individuals with FASD and their families are so thankful for you and your efforts.

EB: I have also begun a psychiatric service dog program here in Ontario. We deal mostly with veterans with operational stress injury. We have a commitment to providing service dogs at a reduced cost to our veterans. It’s our own way of saying thank you for all that you have done for us.

BM: What an amazing program. They deserve it. Are there particular dog breeds that are good for service dogs?

EB: I predominantly use Labrador Retrievers because they are a “bomb proof dog.” They have such wonderful temperament and it takes a lot to upset a Lab, if at all possible. Having said that, all of our dogs are thoroughly temperament tested to make sure they are “bomb proof” before they even enter our training program.

BM: I understand that is very important.

EB: We also use Standard Poodles for extensive health issues such as asthma or allergies or medical issues such as feeding tubes or colostomy. If it needs to be a cleaner environment, we will use the Standard Poodles because they are less allergenic. There is no such thing as a hypoallergenic dog; please make note of that!

BM: I am aware of that now. Thank you.

EB: Standard Poodles are a low shed and low dander dog. It’s mostly the dander that people are allergic to, not necessarily the fur.

BM: I have heard that Poodles are easy to train and are very well tempered dogs, is this true?

EB: Yes, they are. They tend to be a bit goofy until about the age of one year. They are quite hilarious. They are the jokester dog and if you have a sense of humor, you’ll be laughing a lot.

BM: That’s wonderful. What do these service dogs bring to those with FASD and other special needs?

EB: I’ll give you two examples. My first example is a little girl that I work with and she has FASD. She suffers from severe anxiety. Her anxiety is to the point where her vision becomes affected if she becomes too overstimulated. She can occasionally have seizures as well. Her dog is a companion dog that goes to school with her every single day and offers her support. When she becomes over anxious she will go and lay with her dog and the dog will comfort her and provide her deep pressure therapy, where the dog will push against her. Pushing is comforting. If the dog sees that she is becoming overstimulated, the dog will go and alert her as if to say ‘come and spend some time with me.’ The dog could also alert her teacher to let the girl know to go and lay on the dog bed with her dog. Example number two is a young man who becomes extremely violent when he’s confronted. Instead of lashing out and hitting or destroying things, he will go and lay with his dog. The dog will cuddle up to him and wrap her paws around him. They lay together and the anxiety and anger will dissolve. Since his parents have gotten the dog for him and the dog has been trained to do its job appropriately, they have not had one hole put in their wall, no broken doors and no damage done whatsoever. Prior to the dog being there, they were repairing something every week. Their son’s ability to manage his anger was simply non-existent and having the dog has given him an outlet to go and spend time with his dog and be left alone and not confronted. She handles his anger and encourages him to pet her which is a calming technique. A bond has developed between them.

BM: Wow, that’s so amazing to me. It’s absolutely marvelous what dogs can do.

EB: There is a basic instinctual understanding between children with FASD and dogs. It’s an animalistic behavior that they can relate to and understand. No one is pushing and prodding the child to do things that causes them high anxiety; instead they have a buddy on an even level. They know where their buddy stands, their buddy knows where they stand, and when they start getting upset their buddy knows that they are getting upset and says ‘come with me.’

BM: That’s incredible. You have touched on some of the techniques that are used by service dogs for people with FASD like deep pressure therapy, petting, and cuddling; are there any other recommended techniques?

EB: There is night terror and nightmare rescue. When the child begins to stress or make noise in their sleep the dog will climb on the bed and provide deep pressure therapy thus enabling the child to relax and go back to sleep. If the child wakes up, having the dog there to pet and cuddle is far more comforting than having a parent come in and touch the child. This is something that is very important for people to understand. When a child with FASD says ‘don’t touch me, that hurts’, we mean it. It is physically hurts. It is not said for attention seeking and it is not said to make you feel guilty or bad. It is an actual honest statement. At times when we are very, very anxious, physical touch feels like sandpaper on our skin. It hurts. It is easier for us to take the touch of a dog than it is for us to take the touch of another person.

BM: That is very important to know. Do you have a service dog for you?

EB: I sure have my own dog, of course! I had my own dog up until last year. His name was Maxwell and he was a 165 pound Rottweiler. He was solid mush. He got the reputation of being our “Wal-Mart greeter” because he would run out and say hello to everyone who came by. He didn’t have a mean bone in his body. He went everywhere with me until last year when he passed away.

BM: I’m so sorry to hear that. It’s hard to lose a companion like that, I know.

EB: It’s a very tender spot. Now, I am training my new service dog; his name is Sir Winchester. He is currently 5 months old and he is coming along beautifully.

BM: What breed is he?

EB: He is a mix of Labrador Retriever and Dutch Shepherd. He looks like a Yellow Lab with a bit more perky ears.

BM: Very cute. How do your service dogs personally help you and your FASD?

EB: When I go out in to the community and speak, which I do often, I have great difficulty with public speaking and I become overly anxious to the point of having panic attacks. Having my dog there pressing up against me is just enough to keep me from becoming overly anxious. Also, there are some people in the world that for some reason I don’t feel comfortable near. It could very easily have nothing to do with them and it could be a memory trigger from my past or whatever. If my dog feels that I am uncomfortable, he will place himself between me and the other person and press against me to let me know he’s there and I’m okay.

BM: It’s wonderful that you are training the dog and then in the end the dog helps you.

EB: Exactly.

BM: Tell me a little bit about your public speaking appearances. I also saw on your website that you are an author and have done many TV appearances.

EB: I have done a lot of public speaking in regards to veterans and service dogs and trying to allocate funds from Veteran’s Affairs Canada for service dogs for veterans. I’ve been in that battle for the last five years and haven’t made much headway, but I’m not going to give up.

BM: Don’t give up. They need an advocate.

EB: I have no intention of it. I have gone around the country introducing the concept of psychiatric service dogs and the benefits that they can provide. Most notably, less involvement by EMS personnel because the assistance is already there from the service dog. EMS is less likely to be called, thus saving tax payers more money.

BM: Absolutely.

EB: I have also just started speaking out about FASD. I have just recently come out of my own FASD closet. I am writing my first article for Adoption Magazine with regards to having FASD. I have done a couple other articles with regards to service dogs in the community and have done three separate articles for Disabled World Magazine. I also just had an article published in City Parent Magazine. I wrote a portion of a book called Lab Stories that was published by Scott Hall. I have a story about one of our service dogs within that book. I have also been accepted to publish a book called Living with FASD.

BM: Please let me know when your articles come out and your book becomes available, we would love to feature them on the NOFAS website and in our NOFAS Weekly Roundup newsletter. Is writing a passion for you?

EB: I really enjoy writing. I find that it comes relatively easy for me, especially when I have my subject firmly planted in my brain.

BM: Do you have any other passions beside service dogs and writing? What makes you happiest?

EB: I love being with my family. I think one of the greatest joys that I get is cooking for my family. The biggest reward that I get is doing a huge Christmas dinner, and I do mean huge. I usually make turkey, roast beef, and ham with an entire dessert table. I like when everybody is on the sofa after dinner and cannot move because they ate too much. That’s when I am grinning from ear to ear.

BM: I’ll be stopping by your house next year.

EB: You are welcome. We always have an empty space at our table for someone that has no one to celebrate Christmas with.

BM: That’s a wonderful tradition.

EB: That’s a rule at our house and a lot of times we have someone new come. No one should ever be alone around the Holidays.

BM: Absolutely. That’s wonderful how warm and welcoming your family is.

EB: The other thing that makes me the happiest, like any other mother, is seeing my children succeed and exceed expectations.

BM: You are a terrific mom. I have just one question left. What is the one message that you would give to women that are pregnant or thinking of becoming pregnant?

EB: Even one drink can hurt.

BM: Simply stated, but powerful. Thank you for sharing your story with me. I have learned so much about the incredible use of service dogs and only hope that everyone with FASD gets the chance to have one. Keep up your incredibly important work!

EB: I will, thank you. *After this interview was conducted, Elizabeth’s service dog, Winchester, passed from complications of a birth defect. He is very sadly missed and this interview is dedicated to his memory.

*After this interview was conducted, Elizabeth’s service dog, Winchester, passed from complications of a birth defect. He is very sadly missed and this interview is dedicated to his memory.

Brianna Montgomery: Welcome and thank you for agreeing to speak with me today. Let’s get started! Tell me a little bit about yourself and having FASD.

Erin D.: I grew up in foster care and was adopted at 1 ½ years old. I was diagnosed with FAS and it has been interesting. School was difficult, but I had a lot of help. I was born blind in my right eye and because of that I cannot drive.

BM: Tell me about some things that you excel at and what things have been difficult for you.

ED: Well, obviously driving is difficult for me and the mental part of having FASD, like understanding what people are saying, has been difficult. Actually, I haven’t had too much difficulty with things. It has been mostly just gullibility and understanding when someone is being truthful or not.

BM: What things are you good at?

ED: I do a lot of crafts.

BM: Oh yes, I was on your website and I saw your jewelry. It is incredible; I am very impressed!

ED: Thank you, I have been doing a lot of crafts and trying to keep myself busy now that I am not working anymore.

BM: Tell me a little bit about your background. Did you go to school?

ED: I graduated high school and decided not to go to college. I worked at a greenhouse since April of 2006.

BM: What was your job like at the greenhouse?

ED: I did carry-out. I helped people carry plants and bags of soil and mulch out to their cars. It was tiring after a while.

BM: What interested you in working at the greenhouse?

ED: I have always liked nature. Ever since I was little I loved being outside. I would take rocks and seeds and bring them in. I was always a rock collector. I also took a class at a transition center to prepare me for having a job and I was in the agriscience program for one year and I really liked that. I’ve always been fascinated with how things grow. I also took a retail class, so that helped with my job.

BM: That’s a wonderful experience. Do you talk to people about having FASD or educate people about FASD?

ED: I do talk to people about having FASD. In middle school, I gave my first speech about having FASD. In high school, I spoke to our family living class about what FASD is and how it affected me. I also do my jewelry and pass out my cards with information about me and FASD prevention. I have spoken in front of my church on “Disability Sunday” as well. They pick someone from our church group that would like to share about their experience with a disability and how it has affected them and their Christian life.

BM: It sounds like you have done a lot of great things! Earlier you touched on how you excel at crafts, especially beading. How did you passion for beading start?

ED: I am not really sure where that started. I like little things and I have always been in to beads. I started with stringing beads on a necklace and then I went on to YouTube and looked up different designs. That is where most of my design ideas for bracelets and jewelry have come from. Someone tried to teach me bead weaving and I didn’t get it at first, but then I taught myself by watching more YouTube training videos.

BM: So you are pretty much self-taught; that’s great! What is your favorite part of beading? What are your favorite things to make?

ED: I like creating different designs and coming up with new ideas. Just showing people that I can do this is important to me. With FASD there are no limits. I am a go-getter and I am going to try it.

BM: How are your beading projects a reflection of you?

ED: In each bracelet or piece of jewelry, I always have one wrong bead to show I’m not perfect.

BM: That’s such a good message to send. There is a little lesson in each of your pieces of art.

ED: It has also helped me to realize that I am not perfect. I know people want things to look right and I was always struggling with that. I brought this up to my friend Rob and he told me “who cares what people think.” I went with that philosophy and he helped me develop the cards with my story on it.

BM: That’s a great way to look at things. Tell me a little bit about your beading blog, “Beadweave it or not”, (which is a very cute name, by the way).

ED: Thanks. I started my blog because I wanted to raise awareness of FASD and show my jewelry. My jewelry is my way of showing that I have FASD and people with FASD can be creative. On my blog, I also include when I will be at FASD meetings and things like that.

BM: Your blog is very impressive and a great educational resource. How does blogging and beading help you with your daily life?

ED: Funny thing is that I always have to remember to put the wrong bead in when I am making my jewelry. Those activities help to relax me and help me remember that I am creative, but I’m not perfect.

BM: Do you have any other hobbies besides beading and blogging?

ED: I just went to a recycled craft show about a month ago. It was all things that were made from other things. We went to a booth where a woman crocheted with plastic bags. I have now started crocheting with plastic bags and I’ve made pouches, purses, placemats and I’m in the process of making a couple doormats. My newest thing is making beads out of paper. I will be blogging about my new activities soon.

BM: That’s so neat! Do you sell the jewelry and crafts that you make on your website?

ED: Yes I do. You can go to www.madaboutbeading.blogspot.com/.

BM: Do you ever go to craft shows to sell your art?

ED: I sell my jewelry at a coffee shop nearby called Urban Mill. I showcased my stuff there in August at their two-day art fair. Actually a woman that bought my jewelry told me that she had a relative with FAE and that was interesting to hear about her.

BM: That’s nice to be able to help someone understand more about FASD. What do you do with the proceeds that you receive?

ED: I am raising funds for NOFAS. I’ve raised almost $300.

BM: That’s incredibly kind of you. Thank you for thinking of us. I hope that you’ll keep most of the money for yourself; you have worked hard for it! Thank you. Tell me a little bit about your friends. Do any of your friends also have FASD?

ED: A couple other people including my friend Rob. He started a group for adults with FASD in our community. At one of the group meetings this summer, I met a couple new friends.

BM: That’s great! What do you do at your meetings?

ED: We chat and catch up with what we have all been up to. It’s basically just a get together.

BM: That’s nice to have friends that are going through similar circumstances as you.

ED: Yes, it’s good to have them.

BM: Do you have any other interests or things that you like to do with friends?

ED: I like to be on the computer, watch movies and listen to music. I hang out with friends when I can.

BM: Do you have a favorite musical artist? Movie?

ED: I like all kinds of music and I really enjoy family movies.

BM: I only have a couple more questions for you. What do you want people to know about individuals with FASD?

ED: Just because we have a disability doesn’t mean we can’t do stuff. We strive to do our work the best we can. We are not stupid and we do get things. We are unique.

BM: That’s exactly right. I have met so many incredible people with FASD and you have overcome your challenges so well. If you had one message for women thinking of becoming pregnant or mothers-to-be, what would that be?

ED: Stop and think about what you are doing. My birth mom didn’t really do that, but I do not blame. There is no use of playing the blame game. I am alive.

BM: That’s very mature thinking. Thank you so much for taking the time to speak with me. I am so impressed with the wonderful things that you have achieved and are doing. Also, thank you again for thinking of NOFAS for your fundraising. You are incredibly generous and kind.

ED: I am happy to help. Thank you for this opportunity.

Brianna Montgomery: Welcome and thank you for participating in this interview with me today. I am excited to learn more about you.

Erica B.: Thank you for interviewing me.

BM: First question, how does having FASD affect your life?

EB: It has changed over the years. When I was younger there were a lot of school-related issues and some behavioral issues. As I got older, I grew out of a lot of those problems and I’m not in school, so clearly school isn’t affecting me right now. Now I’ve noticed that I have trouble staying organized and keeping myself from getting distracted. When I need to start a big project like cleaning the house or running errands I have make sure that I have everything written down, otherwise I will forget things. A lot of these issues are helped by my husband, Brian who is always there to keep me on track.

BM: That’s great to have help. Tell me a little bit about your husband. How did you meet him and what effect has he had on your life?

EB: We actually met through Facebook right before I moved to Washington, DC to intern with NOFAS. We kicked it off really well right away and emailed back and forth for several months and have been together ever since.

BM: That’s wonderful. When did you get married?

EB: We just celebrated our two year anniversary in August and we got married in California.

BM: Congratulations! That’s great. What does your husband do?

EB: He is a lawyer.

BM: Wonderful. You said that your husband has been instrumental in helping you deal with FASD, what other skills have you developed to help keep you on track?

EB: I would say that the most important skill that I have learned is to ask for help. That took me the longest time to learn. I was always too afraid to ask for help and would struggle. I was discouraged because the teachers and professors didn’t know how to help me in a way that I needed. I never really did that well in school until I came out to DC and got my Graduate Certificate in Substance Abuse Rehabilitation from Northern Virginia Community College.

BM: What made that program different and why did it work for you?

EB: Because I really enjoyed what I was doing and I’m passionate about it.

BM: Do you ever talk with people about having FASD or educate others about the disorder?

EB: Yes, I speak at conferences and give free presentations because I want people to be educated about FASD. Everyone that knows me knows that I have FASD. It’s not the first thing that I bring up though. In addition to speaking engagements, I also used to read various articles on the disorder and look at the comments on the articles. I was finding there were still a lot of people that thought that drinking during pregnancy was perfectly okay. So I started to make comments myself and educate others about FASD, but I got myself frustrated because people just weren’t getting it. No matter what I would say it just wasn’t going through, so I stopped trying to educate people that way.

BM: It’s understandable. There are still so many people that think it is okay because of the conflicting information that they are receiving from the media and other sources.

EB: It is amazing to me how many doctors are still telling women it is okay to drink, especially in the early stages of pregnancy. I read an article one time that made me really emotional because a woman was just disputing that it really is unsafe to drink during pregnancy. So I called my dad and I asked him, why are doctors still telling women that it is okay to drink? He couldn’t understand it either, and he’s a doctor. I think medical students need to be taught about FASD in school.

BM: Totally agree. We have been working with medical schools here at NOFAS for some time (as you know), but it would be great to make sure that all of the medical schools have an FASD education program in place.

EB: I agree.

BM: So tell me a little about your background, I know you are originally from Minnesota and you went to school in South Dakota, tell me about your experience in the Midwest.

EB: I majored in Human Development and Family Science at the University of South Dakota.

BM: What made you want to move out to DC?

EB: I wanted to work with NOFAS and prevent FASD.

BM: I heard that you worked on Capitol Hill. Tell me a little bit about your experience working there.

EB: I worked in the Media office for Senator Tom Daschle of South Dakota. I did a lot of communicating with the various media sources and making sure that everything got where it needed to go.

BM: That sounds great. I know that you are close with the Daschle family. What has your relationship with them meant to you?

EB: I still keep in touch with them and see them at the NOFAS benefit every year, but obviously they are very busy. They mean a lot to me.

BM: Have you ever thought of going back to work on Capitol Hill or running for political office?

EB: At one point, I really wanted to run for office but I decided against it. Working on the Hill kind of soured me against it because of some of the politics I’ve seen. What I saw was heartbreaking and it ruined it for me. I feel now that I can do so much more on the sidelines.

BM: I can understand that.

EB: I’m very belief oriented and I feel like the political climate right now would not allow me to actually change things for the better. Everything is so negative. No one seems to have respect anymore like when I worked on the Hill.

BM: Okay, off politics now. Tell me about your goals and aspirations for the future.

EB: Personally, I would like to start a family. Professionally, I would like to work for a non-profit and do more volunteer work. My main goal is to work with families, mothers and children and those dealing with substance abuse issues and domestic violence.

BM: Those are great plans and you have the background to accomplish them. What activities do you enjoy doing?

EB: My husband and I love to travel. We go on cruises every year.

BM: That’s cool. Where have you gone?

EB: All over the place. We have been to Mexico and the Caribbean several times. This November we are going on a cruise to Jamaica, the Bahamas and Haiti.

BM: That sounds fun. What do you like best about cruises?

EB: I like that you can visit multiple places at once and I actually really like being on the boat. Everything is provided for you.

BM: That is a nice feature. Have you travelled anywhere else via cruise or otherwise?

EB: I have travelled to Italy, France, Holland and Spain with my family. I also had the incredible opportunity to travel to Bosnia during the Kosovo crisis with my dad when I was younger.

BM: Wow. What was that like?

EB: My dad went because he was the Director of Medical Services for the American Refugee Committee and he decided to take me with. My mom was very against it because it was so dangerous, but I went anyway. We each had our own soldier with us because we were walking through landmines and minors like me were susceptible to getting kidnapped.

BM: That’s a crazy experience to have when you are so young.

EB: That experience definitely stayed with me. It changed how I viewed the world and war. I would actually like to go back to Bosnia now and see how it has changed. Things are more positive now.

BM: Definitely. Are there any other places that you have travelled or would be interested in travelling to?

EB: I would love to visit some of the Scandinavian countries because that’s where my heritage is. I am mostly Swedish and partly Norwegian and Danish.

BM: Tell me more about your family. Do you have any brothers and sisters?

EB: I have one biological sister that was adopted by a different family but we were raised in close contact. I am very close to my biological family. In my adoptive family, I have a 21-year-old sister and an older brother who is a Cambodian refugee that my parents brought over when he was 17. His entire family died in the war in Cambodia.

BM: That’s awful, but wonderful that your parents brought him to a safe place. Where are your brother and sister now?

EB: My brother lives in Minnesota with his wife and two daughters. My sister is in the process of going to veterinary school, but right now she is working and living in Minnesota.

BM: What do your parents do?

EB: My dad is a doctor and my mom is a homemaker and volunteer tour guide at the Minnesota State Capitol in St. Paul. They live in Minneapolis.

BM: It sounds like you have a very interesting and diverse family. What other interests do you have?

EB: I love shopping. I like shoes and clothes. My husband and I really enjoy going to movies.

BM: What kind of movies do you like?

EB: Mostly big-name, action movies like Transformers and Harry Potter.

BM: What is your favorite film?

EB: I have a lot. I like Harry Potter, Unstoppable, anything with action and suspense.

BM: Do you enjoy reading? If so, do you have a favorite author?

EB: I really enjoy reading on my iPad. I like Harry Potter, the Shopaholic series, and suspense books.

BM: Do you have a favorite TV show?

EB: I like 19 Kids and Counting, Extreme Home Makeover and shows that aren’t on the air anymore like Golden Girls, Friends and The Cosby Show.

BM: Any other interests?

EB: I enjoy crafting, puzzles and gamesâ?¦especially video games.

BM: What video games do you play?

EB: I’m big in to World of Warcraft.

BM: Fun. What other games do you like?

EB: I like any game that I can play on my iPhone or iPad and I really like board games because I can interact with people. I also enjoy any game that I can play on the Wii.

BM: Sounds fun. One last question, what is the most important thing that you want people to know about FASD?

EB: The most important thing is that it is completely preventable if you don’t drink; not only during pregnancy but also during breastfeeding. That’s ultimately the only point that you need to drive across. Also, people with FASD need proper supports in order to thrive, so that is very important as well.

BM: Very true. Thank you so much for speaking with me. It was a pleasure learning more about you.

EB: Thank you.

Brianna Montgomery: Welcome Lucy, thank you for agreeing to speak with me today. I am very interested in learning more about you. Let’s start first with some fun questions, what kind of music do you like? Do you have a favorite singer or band?

Lucy K.: I like Beyonce and Weird Al.

BM: That’s an interesting combination. I saw Weird Al in concert when I was younger, he was great. Do you have a favorite song by him?

LK: I like “White and Nerdy.”

BM: That’s a great song. Do have any favorite movies?

LK: I like Harry Potter.

BM: Have you seen the newest Harry Potter movie yet?

LK: Yes, twice.

BM: Wow. Have you seen all of the Harry Potter movies?

LK: Yes, many times.

BM: Are there any other films that you like?

LK: I like Master of Disguise.

BM: That’s a great movie, Dana Carvey is really funny. I know that you just recently went back to school are a sophomore now, what is your favorite subject in school?

LK: I like science.

BM: What interests you about science? Why do you like it?

LK: I like the experiments.

BM: Do you have any favorite experiments that you have done?

LK: Not really.

BM: Do you have a least favorite subject or one that is more difficult for you?

LK: English is hard with writing.

BM: Writing papers can be difficult. Do you play any sports?

LK: I do gymnastics.

BM: Are you on your high school’s gymnastics team?

LK: Yes.

BM: What is your favorite part of gymnastics? Do you like balance beam, bars, floor?

LK: I actually really like the vault.

BM: That’s great. The vault is pretty tough! In addition to playing sports, do you like watching sports?

LK: Yes, I like baseball.

BM: What is your favorite team?

LK: I like the St. Louis Cardinals.

BM: They are a great team! So you like watching the Cardinals, what other things do you like to watch on TV?

LK: I really like Tom and Jerry, Spongebob Squarepants and Super Nanny.

BM: Those are great shows. I heard that your birthday was a couple weeks ago and you turned 16. How did you celebrate?

LK: My family and I went to a Japanese restaurant.

BM: That sounds like fun. Is Japanese food your favorite?

LK: Yes, I love sushi.

BM: Did you have a cake for your birthday?

LK: My mom made a sand castle cake.

BM: Wow! That’s cool! 16 is a pretty fun age. Are you planning on getting your driver’s license?

LK: I’m trying, but I’ll probably wait until I’m older.

BM: That’s a good idea. More time to practice. I also heard that you recently visited South Carolina with your family. Do you enjoy traveling and what is your favorite place to travel?

LK: I like to go to Hawaii.

BM: Have you been there before?

LK: Yes, I was there last year.

BM: What did you do while you were in Hawaii?

LK: We went snorkeling and I got to see my cousins.

BM: That sounds like fun. What island were you visiting?

LK: We went to Maui and the Big Island.

BM: Oh wow, I hear those places are beautiful.

LK: They are. I had a lot of fun.

BM: That’s wonderful. Do you have any other favorite vacation spots?

LK: I really like New York.

BM: What do you like to do in New York?

LK: I like to go to the American Girl store.

BM: That’s fun, what else do you do in New York?

LK: We go to Ripley’s Believe It or Not.

BM: I’ve heard that’s a fun place. Do you have any favorite celebrities or is there someone really famous that you’d like to meet?

LK: I’d like to meet Ke$ha. I really like her music.

BM: She has fun music. Do you have a favorite actor and/or actress?

LK: I like Sam Puckett from iCarly.

BM: Do you have a hero?

LK: Well, I have more than one.

BM: That’s okay.

LK: My mom is one.

BM: That’s very sweet, who is your other hero?

LK: Svetlana Boginskaya.

BM: Is she a gymnast?

LK: Yes, she is a famous Russian gymnast. She is the best.

BM: That’s great. Tell me a little bit about your family. I know your mom and dad. Do you have any siblings?

LK: Yes, I have a sister Laura who is 23 and my brother Paul is 15.

BM: What does Laura do? Is she in college?

LK: She is going back to school to get her Master’s degree in Virginia.

BM: That’s great. Do you have any pets?

LK: I have two cats.

BM: What are their names and what kind of cats are they?

LK: Their names are Zak and Bailey, both boys and they are tabby cats.

BM: Are there any other pets that you would like to own?

LK: I would like a dog.

BM: What kind of dog would you like?

LK: Either a Poodle, a Boxer or a Chihuahua.

BM: Those are all very nice dogs. Do you plan on getting a dog soon?

LK: No, I’ll probably get one when I’m older.

BM: That’s something to look forward to. I know that you are really in to technology and you have an iTouch. What are your favorite things to do on the iTouch?

LK: I like to listen to music.

BM: I only have one more question for you and it’s about living with FAS. Do you ever talk to anyone about having FAS?

LK: Sometimes, but not very often.

BM: Thank you for talking with me. I enjoyed learning more about you.

LK: Thank you.

Brianna Montgomery: Welcome, Chanel! It is so nice to meet you. Thank you for agreeing to participate in this interview. I look forward to learning more about you.

Chanel T.: Thank you, you too.

BM: Let me get started and I will ask you a few questions about your life and your interests. First question for you, how does having FAS affect your life on a daily basis?

CT: FAS is very, very difficult. I don’t get up everyday with the same question. This is something that I just have to deal with.

BM: What are some of your biggest challenges with having FAS?

CT: My speech impediment is one of the most hard. I go through it everyday. Another problem that I have is that I don’t learn the way that other people learn. It is very challenging for someone that does not know my disability. They don’t understand that they have to slow it down. They can’t give me five steps to do something; they can probably just give me two or three at a time.

BM: What tools do you use to overcome these challenges?

CT: The teachers have been keeping me in front of the classroom and it really helps me to not get distracted and things like that.

BM: Anything that helps! Earlier today you had shared your FASD website with me. Along with the website, what do you do to educate others about your disability?

CT: This is a 100% preventable disability and I present in the classrooms of younger teenagers and they don’t really realize that drinking can give the unborn a very hard life. I have learned so much about myself through helping others with these presentations.

BM: That is definitely true. When you are teaching others about yourself, you learn more about yourself.

CT: Exactly.

BM: So you give presentations in classroom settings, have you ever spoken at a conference before?

CT: Not yet. That’s the next part that I am working toward. I would love to give a presentation for your organization.

BM: We would love that! Thank you. Tell me a little bit about your website, advocatefortheunborn.com/default.aspx. How did it get started?

CT: I love presenting, but I never really wanted to do a website. Then when one of the teachers from school was like “Chanel, you need to do a website”, that’s when my older sister helped me get it going.

BM: Was it easy to put together?

CT: My older sister helped a lot and got it done in like two hours.

BM: Tell me a little bit about the content of your website. I saw that you are a strong advocate for the incarceration of women that are consuming alcohol during their pregnancies until the child is born. Why do you feel so strongly about that?

CT: Most women that drink while they are pregnant are already addicted to alcohol. What I was thinking that if they were clean before the baby was born that they would see that new life and continue to be clean. I think that is very important.

BM: NOFAS has a strong stance on this issue as well. We believe that women who are pregnant should not be incarcerated but helped in to treatment. Are you saying that you want the women do be incarcerated in jail or put in to treatment facilities?

CT: They should be in treatment so that they can receive the help that they need. Jail wouldn’t provide that.

BM: When were you diagnosed with FAS?

CT: At birth, I was six weeks premature.

BM: Wow, very early. You seem like you are doing very well now though. What do you do now? Do you work or go to school?

CT: I work and go to school.

BM: Are you in college? What do you study?

CT: I am a senior this year and I am studying to be a Kennel Technician at Richard L. Sanders School. I love animals.

BM: Tell me about your passion for working with animals. Do you have any pets?

CT: I have one dog and one parrot. My parrot’s name is Johnny Angel and my puppy’s name is Elizabeth Taylor.

BM: Very cool names! What kind of dog is Elizabeth Taylor?

CT: She’s an Italian Greyhound.

BM: Wow! So you are a dog and a parrot person, do you like cats and other animals too?

CT: I’m not a cat person, really. I like parrots, rabbits and puppy dogs.

BM: What kind of work do you do right now? Are you working with animals?

CT: I am a Veterinary Advocate.

BM: Do you like your job?

CT: It is a very high stress job.

BM: What causes it to be high stress?

CT: Lots of animals to take care of.

BM: I bet that would be tough, but rewarding.

CT: It is.

BM: What other interests do you have?

CT: I enjoy watching TV. I like the Golden Girls.

BM: Which Golden Girl is your favorite?

CT: That’s a hard one. I probably have to say Dorothy.

BM: She’s funny. What other television shows do you like?

CT: Let me think…I like Life in the ER.

BM: Another good one, what other things do you like to do?

CT: I like to talk on the phone and go on the computer…especially YouTube.

BM: Do you have your own YouTube site or do you just like to watch videos?

CT: I like to watch videos on FAS on YouTube.

BM: Have you seen the NOFAS YouTube site, AlcoholFreePregnancy?

CT: No, I haven’t, but I would like to.

BM: We have some great videos on there from experts in the field and of people with FASD. I will send you the link. Do you have any other hobbies or do you have a favorite place to visit?

CT: I really like to go to Busch Gardens. It is close to where I live. I love rollercoasters.

BM: Rollercoasters are a lot of fun. That must be nice to live so close to such a cool place.

CT: It is. I like it.

BM: Do you do any volunteer work?

CT: I volunteer at a nursing home. I take Elizabeth Taylor over there.

BM: That’s so nice! I bet the residents really like that.

CT: Yes, I like to see everybody and go over there.

BM: That’s very nice of you to do that. I only have one more question for you, what is the most important thing that you want people to know about FASD?

CT: This is a lifelong struggle and is 100% preventable. This is not my fault at all. You can bring 100 doctors in to a room and they can all tell you not to drink while pregnant, but when you bring a child with FAS in to a room and they see that this is what she goes through every day, they listen more to that than what you are hearing from the doctors.

BM: That is so true. This is your life everyday and you have done so many great things with your life. Thank you so much for speaking with me and for all of the amazing work that you do. I have greatly enjoyed learning about you.

CT: Please let me know if you know of anyone that would like a presentation on FAS. As many presentations as I can get, one more child is saved.

BM: I would be happy to let people know. Thank you, Chanel.

CT: Thank you, Brianna.

Brianna Montgomery: Thank you for agreeing to be interviewed. We are so excited to learn more about you. The first question that I have is how does FASD affect your life?

Morgan F.: FASD affects every part of my life. Because I live with FASD, there are many challenges that I have to overcome every day from my own physical body to my own neurological deficits. Some days are better than others and you just have to adapt with every changing day.

BM: I agree. The second question that I have for you is what do you believe needs to be done to address FASD in the community and among experts in the field?

MF: Believe it or not, my grandmother and I were just talking about this [topic]; we need to find a balance between prevention and research. Education and prevention are key in improving upon the problem that we are facing, but we also need to find that balance between also having research. Right now we are kind of at an impasse because more money is going to research than education and prevention. One thing that we need to do, not only at the community level but at the expert level, is promote better understanding. At the community level most people do not know about FASD and because there is such a lack of knowledge we are facing an epidemic. At the expert level we need to promote that same understanding. You can look at something clinically through the eyes of a researcher and only see one aspect. It’s great that they can look in to the research, but understanding the whole picture is absolutely necessary.

BM: Very well stated; prevention, education and research are definitely all important to the cause. My next question is as an individual with FASD how important is it to you to educate others about the disorder?

MF: It is very important to me to educate others because as an individual with FASD I know first hand what it is to live with the disorder. Because of the struggles that I go through, it is difficult and I don’t enjoy it. I don’t want someone else to go through the same difficulties I am going through or go through even more difficult trials. That is the fuel to my fire. It is what keeps me going. The knowing and understanding my own brain damage and physical disabilities on top of wanting other people to understand what’s going on with me, with others and with themselves.

BM: What have you done to educate your peers?

MF: I share my story and give presentations across the United States. I believe that it is a very effective means of education on FAS and FASD. I can provide a unique look in to how FASD affects an individual. I have the gift of articulation. I have the ability to do a public presentation and talk to doctors and researchers on their level. I can also provide an understanding for younger group or less informed group.

BM: That’s wonderful that you share your experiences and tell others about your life. It is helpful to other people who are going through the same thing and is also helpful to prevention of FASD.

MF: When I do my programs I always point out that it was such as relief to understand what was going wrong with me. To know that I have organic brain damage and that there is a reason why things are going wrong and things are going right.

BM: How did you get involved with giving presentations?

MF: This all started at a little booth in Utah. We had one table, some flyers and drums that we had made to attract attention. I spent all day talking to people. From that day to now, we never could have imagined what it would become. It has been great to be able to do this.

BM: The next question that I have for you is what skills have you adapted to overcome the challenges of having FASD that other individuals that are living with the disorder may benefit from?

MF: A lot of the skills that I have implemented are not skills that I have adapted by myself. I have received a lot of support from my family and good friends. I think that is the most important skill that I have acquired, is learning to accept help and knowing that I need help. That comes from my understanding of my own unique FASD’s. I would not be able to get through my day to day life without that support.

BM: What other skills do you use?

MF: Before interviews and presentations, I play my Native American flute. I have to do so because due to my brain damage my thoughts are scattered and I cannot concentrate. I don’t have the attention span to answer the questions in a clear and understandable way.

BM: So the flute has a calming affect on you and helps you collect your thoughts?

MF: Yes, it does.

BM: Tell me a little bit more about playing the flute; how long have you been playing?

MF: I have been playing for about four years. The flute is an absolutely key part of my life. If it wasn’t for my family, but also for the flute, I would not be where I am today. It has been that important of a tool throughout my lifetime so far. It is something that cannot be explained in words.

BM: I understand. It’s more of something that you feel. Who taught you how to play the flute?

MF: I am actually self-taught.

BM: Wow. That is incredible!

MF: Thank you. For the most part I am self taught. I started playing on my own and developed my own unique playing style. After I had been playing for a period of time, I started meeting other flute players and picked up other techniques and adapted those in to my playing style.

BM: What made you want to start playing the flute?

MF: To understand I have to tell you the story of how I got my first flute. At the time we were living in Powers, Oregon and we made a trip on a regular basis to visit my great-grandparents in Santa Rosa. From Powers to Santa Rosa is about an eight hour trip and we would always take the Coastal Highway. About half way is Crescent City where the Trees of Mystery are located. The Trees of Mystery is a privately-owned Native artifact museum. We would always stop at this museum on our trips and at the time the museum was featuring Native American style flutes.

I was just out of Alaska at this time and I didn’t have experience with the Native American flute. I hadn’t heard it or seen the instrument itself. Even if I had heard it, I wouldn’t have known what it was. At the museum the music was piped throughout the building and my grandmother asked me if I wanted to try one of the instruments. The curator of the museum showed me the pentatonic scale and let me play the flute. I played it twice then composed my own music.

BM: That’s amazing! You just knew how to play right away?

MF: Yes, that is where my interest started. When I arrived in Santa Rosa I told my great-grandparents what I had experienced and what I felt. My great-grandparents agreed to purchase a flute for me for my birthday as long as I played. That certainly wasn’t a problem for me.

BM: That’s truly incredible that you instantly knew how to play. It’s amazing that something that you simply play can make you understand yourself better and feel something you have never felt. What other things, besides playing the flute, do you enjoy doing?

MF: My personal interests vary. It isn’t just music. I am an avid reader.

BM: What do you enjoy reading and who is your favorite author?

MF: I love to read history and suspense novels. My favorite authors are Robert Ludlum and Sherman Alexie. Besides reading, I also enjoy research and beading. I’m a photographer as well.

BM: I have seen some of your photos on your website. They are very good.

MF: Thank you. It is something that I enjoy very much.

BM: I have one more question for you: what is the most important thing that you want others to know about FASD?

MF: As everybody knows, FASD is 100% preventable and because FASD is 100% preventable we have to understand that there are only victims, never perpetrators. My mother and my family are as much victims to FASD as I am. We are all affected and because we are all affected we have to work together as a community to prevent FASD and help those affected.

BM: That’s a great message. I want to thank you so much for sharing your story with me.

MF: Thank you.

Tracy recently talked with NOFAS Program Manager Brianna Montgomery.

Brianna Montgomery: Thank you for agreeing to be interviewed. I look forward to learning more about you. My first question is: what has your life been like living with an FASD?

TC: I have Fetal Alcohol Syndrome and it’s been so hard for me. Sometimes I get really upset and frustrated and I need to calm myself down.

BM: What do you do that helps you calm down?

TC: I go outside and relax until I figure out what I need to do. I also watch movies at night time before I go to bed and it helps me sleep.

BM: That sounds like a good way to calm down. What other things do you like to do for fun?

TC: I love spending time with family friend Amber K. and her kids and dogs. I love them and they have always been there for me. I really like visiting them. My mom just got married on October 2nd and we went to Las Vegas. My whole family was there and it was great to see my friends and family.

BM: That’s wonderful for them! I bet you had a lot of fun. When you are with Amber and her family, what do you enjoy doing together?

TC: We like to go bowling, walking, and dancing. We have been shopping for Christmas presents too.

BM: Sounds fun! What are your plans for Christmas?

TC: I celebrate Christmas with my mom and her new husband. We set up a tree every year and put ornaments on it and decorations. I am also going to the Teddy Bear Dance.

BM: Fun! What do you want for Christmas?

TC: I haven’t made a Christmas list this year. My mom always talks to Santa to see what I am going to get.

BM: I bet you’ll get some great gifts!

BM: Let me ask you another question, I hear that you are friends with Dr. Ed Riley. What do you think of Dr. Riley?

TC: He’s a good guy and he’s helped me a lot with my FAS. He has helped me understand my brain better.

BM: That’s good…As an individual with FAS, how do you help others understand the disorder?

TC: I speak at conferences. I will be speaking at the People First Conference in June. I have spoken at many conferences with my mom and Amber in California. I received an award from NOFAS too. I got to see Karli S. when I got my award. She’s a good friend.

BM: That is wonderful…What are some of your favorite TV shows and favorite movies?

TC: I like watching the movie Selena and I watch the Disney channel on TV. I really like Hannah Montana. I like to go to the movies. I just saw Tangled.

BM: Was it a good movie?

TC: I loved it! I was laughing the whole time.

BM: That sounds fun. Another question that I have for you is: do you have any pets?

TC: I have a dog named Sammy. He’s 8 years old.

BM: What kind of dog is he?

TC: He’s a poodle mix. My mom got him when he was a puppy. He was a rescue dog.

BM: Oh, that’s so nice of you to adopt him.

TC: I have three cats too.

BM: That’s great! I have one last question for you…what do you want other people know about your life with FAS?

TC: I want people to know about my brain and FAS. I want them to learn from my life. I have a giant heart and I love people. I’m a people person.

BM: That’s wonderful, Tracy! It has been so great to speak with you. I have enjoyed learning about you and your life.

TC: Thank you so much!

Frances recently talked with NOFAS Program Manager, Brianna Montgomery.

Brianna Montgomery: Thank you for agreeing to be interviewed; it is a pleasure to have you share your story with us. My first question for you is, how does FASD affect your life?

FM: It has affected my life in many ways. I was born six weeks early and weighed three pounds, eleven ounces. As a child, I never knew what it was but it was hard for me to make friends and I found myself feeling afraid of others. School was very hard for me, especially Math and English. I couldn’t comprehend them. I completed high school and tried college, but it didn’t go well. Then I got a job.

BM: Where did you start working and how did that work for you as compared to school?

FM: Working was hard. I didn’t know what I wanted to do and I went from job to job. I couldn’t hold on to a job. It was hard for me because I developed anxiety, depression and an eating disorder. I still deal with that today.

BM: How do you deal with having anxiety, depression and an eating disorder?

FM: I see a therapist often and take medication. It’s still a struggle.

BM: Do you think that these issues are direct results of you having an FASD?

FM: Yes. I believe it is.

BM: I understand. So, what do you do now? Are you still working?

FM: Yes, I work as a cashier for CVS Pharmacy.

BM: That’s great. Do you like your job?

FM: I do. My job is getting more challenging though because it gets busy around this time of year.

BM: What parts of your job do you find to be the most challenging?

FM: When I am pushed to go faster than I am capable. I have to go at my own pace and if I’m rushed I get anxious. Also, if the environment is too loud that bothers me. Sometimes I find myself shutting down.

BM: You said that you shut down when you become overwhelmed with anxiety. How do you deal with the anxiety in your workplace?
FM: Sometimes I will take a break and step outside. I remove myself and come back. Also, I call friends for support sometimes.

BM: It sounds like you have a good control over your anxiety and have your strategies down.

FM: I try. I have been on this job for ten years and it is the only job that I have held on to. I put all of the credit of holding on to this job for so many years on going to therapy and being involved in support groups.

BM: Which support groups are you involved with?

FM: I am very involved with Al-Anon. I have a lot of friends in that group.

BM: That’s great. My next question is, what do you believe needs to be done to address FASD in the community and among experts in the field?

FM: We need doctors to be aware. I have been to many doctors where I tell them I have FASD and they just look at me. I have to educate them. It is sad seeing how much they don’t know.

BM: We see that often.

FM: My goal is to get information on FASD to all of my doctors.

BM: That is a good segue in to my next question, as a person that has FASD, how important is it to you to educate others about the disorder? What have you done to educate your peers other than educating your doctors?

FM: I think it is very important. I have done a couple workshops with Dr. Susan Adubato and she has given me the opportunity to share my story. I also run the Alateen meeting in my area.

BM: How did you get involved with Al-Anon?

FM: I first got involved with Al-Anon way before I knew that I had FASD. I got involved with Al-Anon because I grew up in an alcoholic family. I am involved with Alateen and I lead the meetings, but I don’t share my FASD story yet because it’s hard to explain to 9-15 year olds. There’s a right time and a right place to share my story. I do share my story at the Al-Anon meetings. I always tell myself if there is one young woman who is thinking about having a child and who is drinking, if I share my story and that one person hears me it’s worth it.

BM: That is totally true. You are saving a life in a way. Let me ask you the next question, what skills have you adapted to overcome the challenges of having FASD that other individuals with FASD may benefit from?

FM: I do a lot of writing to express my feelings. It helps me. I also watch people very carefully to learn how to do certain things. I tend to read everything twice to comprehend what I am reading. For my anxiety, I avoid loud and crowded places. I always surround myself with people that I feel comfortable and safe with.

BM: That’s always good; do you have any other friends with FASD?

FM: No, I don’t, but the people that I hang out with and feel safe with most are my friends from Al-Anon. They are very loving, caring and supportive.

BM: That’s great. You talked about how you like to write, that leads me in to my next question. What are some of your personal interests?

FM: I like sports. I really enjoy football and baseball.

BM: What teams do you like?

FM: I like the Jets and the Red Sox.

BM: Those are two really great teams. Do you go to games or watch them on TV?

FM: I mostly watch them on TV. I also really love animals. I love working with dogs and cats.

BM: Do you have any pets?

FM: Yes, I do. I have a dog. I always had an animal in my life. Now that I think about it, having an animal in my life, even growing up, was probably a coping mechanism for me.

BM: That’s a good coping mechanism. What kind of dog do you have and what is his/her name?

FM: I have an 11 year-old toy poodle and her name is Friday.

BM: That’s cute!

FM: She was my niece’s dog and when they moved, I got the dog. She’s spoiled rotten.

BM: Do you have any cats?

FM: I like cats, but I am allergic to them.

BM: So you enjoy animals and sports, do you play any sports?

FM: No, I don’t play sports. I have brittle bone disease and I have to be careful.

BM: So, your bones would have a hard time healing if they broke, correct?

FM: That’s right. I was never able to get involved in any sports. I would rather watch sports on TV anyway because you can see everything.

BM: That’s very true! Okay, I have one last question for you. What do you want other people to know about FASD?

FM: I want people to know that there is hope. I keep telling myself, if I can survive others can too. FASD comes with a lot of shame and challenges. I always tell people to stop and think before taking that drink. Pregnant women should remember that they are not drinking alone.

BM: That’s a positive message to send. I want to thank you so much for participating and telling me your story. I enjoyed learning more about you. I hope that you enjoyed the interview.

FM: I did. Thank you for inviting me to speak with you.

Jasmine recently talked with NOFAS Program Manager, Brianna Montgomery.

BM: Thank you, Jasmine for agreeing to be interviewed for our “Get to Know Me” series. We are so excited to learn more about you. First question, how does having FASD affect your life?

JS: For me I feel like I always have to be one step ahead of everybody because I don’t always understand everything. I have to really pay attention all the time. If I don’t pay attention I miss things. It also affects my social life because people do not understand that I have a disability. There is information out there, but not a lot of people have access to it. It’s hard.

BM: I hear that you recently had a baby. Congratulations! Do you want to tell me a little bit about what it is like having FASD and being a parent?

JS: Thank you, I have a son. He makes it a little bit easier for me, but I have a lot of help. I have a notebook that I use as a schedule for all the things that he will need and what I need to do. I always refer to that. My mom also helps me a lot. My son is really good and makes it really easy.

BM: That’s wonderful! What is his name?

JS: Avery.

BM: What a cute name! Congratulations again! The next question that I have for you is, what do you believe needs to be done to address FASD in the community and among experts in the field?

JS: I have been thinking about how we need FASD education in public schools. We learn about all sorts of diseases in health class, but FASD never comes up. There should be a little course in health class on FASD.

BM: That’s a great idea. We have a curriculum that hopes to achieve that. As an individual with FASD how important is it to you to educate others about the disorder? What have you done?

JS: It is a really big problem. When I had my baby I also had a friend that drank the whole time that she was pregnant because she had no idea about FASD. By the time that I found out she was pregnant, it was too late for me to educate her about it because the damage was done. If she would have been educated her child would not have as many problems as he does.

BM: What other things have you done to educate others?

JS: I tell people about my story and tell them that this is a real problem and no one should drink while pregnant. It’s worse than cancer.

BM: Definitely, it’s a lifelong disability. What skills have you adapted to overcome the challenges of having FASD that others may benefit from? You have already shared that you use schedules, what else works for you?

JS: I started really early in my life and my mom got me in to a support group for kids with FASD. The programs there were instituted in to my life really early on and that helped me more than anything else. In school I had aides to help me organize myself. I had to learn to accept help.

BM: I know it’s sometimes hard to accept help. What other things have helped you?

JSO: Resource room in school was very helpful and being scheduled with after school sports and homework.

BM: You enjoy playing sports? That is a great segway in to my next question, what are some of your personal interests?

JS: I love to write. I have been writing a story since I was a freshman in high school. I still haven’t finished it yet. I like to write songs and draw. I think I am very creative. I also enjoy playing basketball, but I am busy with work now, so I don’t play very much.

BM: Where do you work?

JSO: I work as a Deli Clerk at Price Chopper.

BM: Do you enjoy your job?

JS: Sometimes. It gets overwhelming, but it’s an easy job.

BM: One more question, what do you want others to know about FASD?

JS: That’s a tough one. There’s so much. The most important thing is how it affects younger children. If you educate younger people, it is going to change faster. Younger people are our future.

BM: Very true. Those are all of my questions. Thank you again for interviewing with me. It has been wonderful speaking with you!

JS: Thank you.

Karli sat down with Brianna Montgomery on a recent visit to NOFAS.

Brianna Montgomery: Welcome Karli. I am glad that you were willing to participate in our interview series about people with FASD.

BM: The first question that I have for you is what things are difficult for you with your disability?

Karli S.: Riding a bike and swimming are difficult and some times I can’t remember things.

BM: What is your life like with FASD?

KS: It is harder to do things.

BM: You are doing very well for yourself. I know that you have had a couple jobs, what was your most fun job to work at?

KS: I worked at TJ Maxx.

BM: What did you do there?

KS: I helped hang up clothes in the basement and worked with the boxes.

BM: That sounds like fun. I hear you like to shop, what are your favorite things to shop for?

KS: I like purses and make-up. I like to shop for clothes, wallets and sandals too.

BM: Those are all great things to shop for. I understand that you are involved with a group called Social Climbers, what activities do you like to participate in there?

KS: My favorite activity at Social Climbers is dancing.

BM: Why do you like to dance?

KS: Because the music is good and it is fun.

BM: What do you like about NOFAS?

KS: It is good and I like the work that you do.

BM: Thank you. Have you met other young people with FASD?

KS: Yes, Tracy Combs is my friend.

BM: That’s fun to be with a friend. Do you talk to others about having a disability?

KS: Yes, I go to NOFAS with my mom and talk about FAS.

BM: We love to have you here to help us spread our message.

KS: Thank you.

BM: What do you enjoy doing every day?

KS: I like relaxing, watching movies and playing with sticker books and coloring books at home.

BM: Do you like to be outside too?

KS: Yes, I take walks, relax outside with a magazine, and I like to go to the beach.

BM: What is your favorite part about going to the beach?

KS: I like the Boardwalk because I walk around and look at some of the stores and ride some of the rides.

BM: Sounds like a lot of fun. Who are your favorite people to spend time with?

KS: I like my dad and mom and all of my family.

BM: Family is always great to be with. One more question. What do you want others to know about FAS and your disability?

KS: I want to tell other people that people with FAS are smart and pretty.

BM: They definitely are! Thank you for letting me interview you. This was very fun.

KS: Thank you.

What many do not know are all of the things that lie beneath the surface. He exhibits almost all of the behavioral and mental symptoms of FASD, and has struggled with them his whole life. He has also had problems with skipping school. However, if you spent one day with Taylor one would realize none of that is who he really is.

Taylor recently spoke with NOFAS Program Manager Brianna Montgomery.

Brianna Montgomery: Welcome Taylor. Thank you for participating in this interview with me. I look forward to learning more about you. First question, how does FASD affect your life?

Taylor A.: FASD has affected my life socially, mentally, academically, and caused strain in my family, yet has also benefited me in a strange way.

BM: What do you believe needs to be done to address FASD in the community and among experts in the field?

TA: FASD needs to be addressed in the same way that AIDS, cancer, and other diseases like those are being addressed, which is with a fervor.

BM: Next, as an individual with FASD, how important is it to you to educate others about the disorder?

TA: Educating others about FASD is one of my top three priorities in life.

BM: So what have you done to educate your friends and peers?

TA: I have spoken out to my peers, written papers for classes, and used other ways of communication to get my message across.

BM: That’s great that you are so passionate about helping others understand FASD.

BM: Next question, what skills have you developed to overcome the challenges of having FASD that could benefit other individuals living with the disorder?

TA: I am verbally and literarily proficient, I am determined, outgoing, caring, and I will do anything within my abilities to advocate for myself and others in need.

BM: Now for a more of a special, fun question, what are some of your personal interests?

TA: Some of my personal interests include baseball and other sports, history (mainly the WWII era), computers, engineering, reading, and like most other kids my age, video games.

BM: One last question, in closing, what do you want others to know about FASD?

TA: I want others to know how devastating FASD really is, how deeply it affects a person and those around them, and also I want them to remember a small phrase:“My name is Taylor, and I am going to prove FASD does NOT define me.” So you can see that I am not going to give in, and that there is a fighting chance for those of us with FASD to succeed.

BM: That’s a wonderful attitude to have. Thank you so much for participating in this interview. It was wonderful to learn more about you and get insight into your life.

TA: Thank you.

As Rob grew older he wanted to become part of the solution to the FASD puzzle. He has been involved in the areas of prevention as well as intervention. His bumper stickers patterned after bus signs in Seattle have found their way to Cape Town, South Africa, and Paris, France as well as all 50 states. He was also featured on the video “Students Like Me.” He was on a national committee, NAG for Justice, to help individuals with disabilities understand their rights in the criminal justice system, and he does trainings for peers, based on their project, “The Right Rules.”

He served on the planning committee of the first ever conference by and for individuals with an FASD. He has been a speaker at two FASD Center for Excellence, Building State Systems conferences as well as events in Alaska, Florida, Kentucky, Michigan, and Washington D.C.

He serves on the steering committee for the FASD Center for Excellence, and is the first consumer to be on a national committee for FASD. In 2010, he will also be presenting at the FASD conference in April.

Rob recently talked with NOFAS Program Manager Brianna Montgomery.

Brianna Montgomery: Welcome to you, Rob. Thank you for participating as the very first guest in the new NOFAS Interview series. Let’s get started. First question, how does FASD affect your life?

Rob W.: It has affected my life in several ways. I explain it this way to my friends, my body is 37 years old, but my brain is 20 years old. My cognitive age is a lot younger than my biological age. People have a hard time telling that I have FAS; they don’t believe I have FAS until I start stumbling when adding things up or remembering things. When I am given multiple tasks and verbal directions, it shows.

BM: What do you believe needs to be done to address FASD in the community and among experts in the field?

RW: I would like to have more conferences. I want the experts to work with the school and legal systems to educate them about FAS. The school systems are the ones that need it the most. I would also like employers to be educated so that they can feel comfortable hiring people with a disability and understand that things will go wrong and not to just fire them because something goes wrong, but work with the person.

BM: I understand that you are currently employed with the ARC. How do you like that job?

RW: Yes, I am. It’s great.

BM: As an individual with FASD, how important is it to you to educate others about the disorder? What have you done to educate your peers about FASD?

RW: It is very important to educate, but you have to educate the right people. They are people who are willing to learn about the disability and those who are willing to take it seriously and teach others. I tell others how my disability affects me and what supports I need in place so that I can succeed.

BM: I hear that you do a lot of speaking engagements.

RW: Yes, I have. I have also worked with Georgiana Wilton [of the Family Empowerment Network (FEN) of Wisconsin] on coming up with a brochure for employers regarding FAS. I also have bumper stickers and a video called “Students Like Me.”

BM: Next question, what skills have you adapted to overcome the challenges of having FASD that other individuals living with FASD may benefit from?

RW: I work with constant support from peers, but I have also built a group of support people, like NOFAS and people that know about FAS that can help me with getting resources that I need for school and work. If I want to live on my own, the ARC will help me pay my bills and will help me look for an apartment of my own.

BM: That’s wonderful. Those are great things for others with FASD to know. I personally receive many calls from people saying “I don’t know what to do, I am in a situation where I can’t hold down a job and I need some help.” Your advice is great.

RW: People need to know that there are services available. I suggest vocational rehabilitation. Classes on life skills would be also be helpful for people with FAS. There is a program called “Do 2 Learn” (www.dotolearn.com) that educates teachers how to design the classroom for kids with learning disabilities to help them function better.

BM: Next question, what are some of your personal interests?

RW: I like computer games, crafts, gardening, and hanging out with friends. I also like speaking at conferences. I really like being a mentor to other people that have FAS and teaching them that I have FAS too and I have some of the same problems that they do. I am also a part of a Monarch Watch Program. I tag and release monarch butterflies every year before they fly South to California and Mexico.

BM: What does that program involve?

RW: I tag the monarchs with an identification sticker that has my name and home address on it and a special computer code; so that when someone finds them they can see where the butterfly came from.

BM: What an amazing program. Do you keep the butterflies at a sanctuary or at your house?

RW: I find the caterpillars in the plants in my garden and then I bring them in the house and raise them inside. I built a cage for them that I have in my room. They have a better success rate if I bring them in the house because there are no predators inside my house to get the caterpillars.

BM: How did you get involved in this program?

RW: I learned about it when I worked at the Frederik Meijer Gardens in Grand Rapids, Michigan.

BM: One last question, what do you want others to know about FASD?

RW: I want others to know that FAS is completely preventable and that there are other people that have FAS, so they are not alone. I am trying to start a support group for adults with FAS where they can get together, talk about FAS, and work with the [FASD Center for Excellence] steering committee. I would like to have more conferences for kids with FASD, too.

BM: Thank you so much for talking with me. Your interview was great and I learned a lot about you. I know this will be very helpful to other individuals with FASD.

RW: Thank you, I am glad that I could help others with FAS.