Video Transcripts – Pregnancy, Disability, and Woman's Decisions

Video 1: Introduction
Video 2: Making Decisions About Pregnancy
Video 3: Talking with Others About Pregnancy
Video 4: Managing Pregnancy
Video 5: Coping with Discrimination, the Legal System, or Mistreatment
Video 6: Health and Pregnancy
Video 7: Motherhood and Looking Back
Video 8: About This Series

Video 1: Introduction

NARRATOR: Pregnancy, Disability, and Women’s Decisions, an eight-part series on pregnancy and pregnancy decisions. Part One, Introduction.

NARRATOR: Welcome to the first of an eight-part series of short videos about autistic women and women with intellectual disability. The women will be telling their personal stories about pregnancy and how they made their own life choices about it. Some of them wound up being parents and some of them didn’t, either by chance or by plan, but all of them have experiences to share about their decisions. Their experiences could be valuable to you when you’re making your own life choices. All of the women in this series are either autistic or have intellectual disability. Our first video is a brief introduction to the eight women participating in this video series.

LATRICIA: My name is Latricia Dixon. I have two kids, a four-year-old and a two-year-old. Um, about me, I love taking care of my kids, to see my kids happy. Sometimes I wanna give up but I do it just for them that’s, that’s my strength is my kids, that’s the one who–those are the ones who wakes me up every day, put a smile on my face, it don’t matter if I’m in a bad mood or in a good mood, it’s my kids who’s the one who put a good smile on my face and make me be a better mom than I was before.

SHERRI: My name is Sherri. I am sixty-one years old. I am self advocate. I am independent. And I work at Hollywood senior center. I got one son, five grandchildren, one great-grandson. I decided to have my son even though my parents doesn’t want me to have any children.

E: My name is E. I have a hearing loss. I use a cochlear implant. And I’m also fluent in American sign language. I have three children. My first I had in college, he was fifty percent planned, and my other two I had after college. My husband has been a huge source of support for me throughout all of my pregnancy and child birth experiences.

SAMONA: My name is Samona. I’m in my late thirties. I have two children ages fourteen and fifteen. I like to sing and create art projects.

SARAH: My name is Sarah and I’m forty-three. I do communications and graphic design for a labor union and I have three children. I always knew that I wanted to have children but I wanted to be in a stable relationship before I started a family so I didn’t end up have my first child until I was almost thirty-five.

PHOENIX: Hi, my name is Phoenix, I am thirty-two years old, non-binary, and a parent of two children now aged ten and twelve.

SONJA: Hello my name is Sonja, I’m in my forties, I like to do a lot of art work. I also like to draw cartoon characters. I have four children. Although I always wanted to have children I also decided to have a tubal ligation because being a single mom was hard work.

DORA: I’m Dora and I’m a scientific researcher and I also like, um, making art and writing stories, and I just started a web comic that combines the two of them. I’ve never been pregnant. I decided really young that I didn’t want children, I have a hard time taking care of myself and I didn’t wanna take care of someone else. Plus my projects are my babies. And I’ve had good luck with using birth control to keep from being pregnant.

NARRATOR: The Pregnancy and Support Services for Women with Developmental/Intellectual Disabilities and Autistic Women project is supported by National Institutes of Health grant number 1R21HD078830. The views expressed in these videos are those of the authors and do not necessarily represent the views of the NIH.

NARRATOR: The Principal Investigator was Mary Oschwald.

NARRATOR: Other team members included Andee Joyce, Annie Wallington, Christina Nicolaidis, Dora Raymaker, Elesia Ashkenazy, Khaki Merino, Mary Ann McCammon, Michelle Berlin, Phoenix Lomis, Sherri Osburn, and Sonja Sizemore.

NARRATOR: These videos are copyright to Portland State University, 2016.

Video 2: Making Decisions About Pregnancy

NARRATOR: Pregnancy, Disability, and Women’s Decisions, an eight-part series on pregnancy and pregnancy decisions. Part Three, Making Decisions About Pregnancy.

NARRATOR: Ask yourself if you want to become pregnant in the next year. If the answer is yes it’s important to start preparing yourself for it physically and mentally. If you haven’t already, start taking a multiple vitamin with at least 400 micrograms of folic acid, which will help protect the baby from spinal cord problems. Avoid any kind of secondhand smoke. Make an appointment with your healthcare provider and tell them it’s for a “pre-conception visit”; they will know what that means. At that visit, you can discuss any prescription drugs you use that could pose a risk to the baby, and any other health issues that might interfere with pregnancy, including any help you need stopping smoking, alcohol, or recreational drug use. Because problems with teeth and gums can lead to premature birth, it is best to be up to date with your dental care. And if you’re being mistreated by anyone, including the person who might become the father of the baby, be sure to get the support you need to keep that person from causing problems with your pregnancy, or any other aspect of your life.

E: I knew from the age of seven that I wanted to have three children. I wanted two boys and one girl. However, here I am, all of these years later, with three boys. My first pregnancy was fifty percent planned. It was the year nineteen ninety-nine and my husband and I ran across a news story that promised abundant baby supplies for the first couple to have a child in the year two-thousand. My son came January ninth instead of January first, but that’s okay, we loved him anyway. It was very difficult to raise a child, um, while being in college at the same time so we decided to wait to have more children until I finished and got my degree. We had our second son five years later. He was a hundred percent planned as we were financially secure and ready to grow our family. My second son was nine years old when we decided to try for another child. I really wanted a boy, however, I have another lovely boy. It was much easier raising the second two children as opposed to the first as I was already complete–I had already completed college and was settled into my life.

NARRATOR: Having a child that you have planned for can be a joyful experience. But for some women, becoming pregnant isn’t in their plans, and they have some hard decisions to make.

LATRICIA: I only knew the children’s father for a short period of time before becoming pregnant and I came from a mother who doesn’t believe in abortion so that was embedded in me. I just don’t believe in abortion. Um, so that’s just how it was. I love children and I don’t believe in it.

NARRATOR: Some women choose to keep and raise an unplanned pregnancy. But that is not the right decision for all women. Some women make different decisions. One woman talked about decisions around adoption and abortion.

WOMAN 1: It was all my decision. My family was saying that they wanted me to have the kid and give it up for adoption, but the doctor told them it was up to me, so the abortion is the decision that I made. …if I had been pregnant with the kid I wouldn’t have been able to go through heart surgery, I would’ve been more in severe risk, I probably would’ve had to been on bed rest the whole time. My heart was really bad before my heart surgery. I didn’t have a job, my family wasn’t gonna be able to support it. I don’t believe in adoption because I, I believe that every child should know who their biological parents are.

NARRATOR: Another woman in a difficult situation decided on adoption instead.

WOMAN 2: When I found out I was pregnant, I was thinking about abortion, but then I thought about it would be like me goin’ out and shootin’ somebody in the head, so I had told the director of women’s services and a person from the adoption agency that I was pregnant and we talked and they told me whatever I decided they would support me. And I told them because of the dad bein’ abusive it wasn’t a safe environment for my baby to be in. So they brought their computer over and looked up online and there was adoption agency nearby and we had set up an appointment and for six, seven months I been seein’ a lady at the adoption agency. It’s open adoption with the sweetest people ever. They’re very caring and loving people. And we get along really well.

NARRATOR: These are hard decisions, but you need to make the choice that is right for you. Talk to people you trust. Follow your own heart. And get the support you need to process your decision.

NARRATOR: If the answer to “Would I Like to Become Pregnant in the Next Year?” is “No” then its important to think through how best to prevent pregnancy.

DORA: I decided that I didn’t want to have a child very young. I was probably in my teens and that’s just because before then I didn’t even think about it at all. i have a hard time taking care of myself and didn’t want to spend anything I had left over on taking care of someone else, I wanted to spend it on my science and my art and my projects and, um, and on having a career, and, uh, I also just don’t like children and that’s okay. My life, my choice. At first I used the birth control pill to keep from getting pregnant. Later, my partner–who also didn’t want to have children–and I decided to use sterilization.

NARRATOR: Unlike Dora, many women are undecided about whether they want to become pregnant. If you aren’t sure that you want to get pregnant in the next year, then you need to think about the best way for you to prevent getting pregnant for now. There are many ways to prevent pregnancy including not having sex with men and various types of birth control.

DORA: Birth control has changed a lot and gotten so much better since I first started needing it–your experience doesn’t have to be like your mom’s!

DORA: The birth control methods that work best are reversible implants and intrauterine devices, and male and female sterilization. The implant and the intrauterine device–a lot of people call it an IUD–are reversible. They last for three to five years and can be taken out if you decide you want to have a baby, or if you have side effects.

DORA: If you’re with the same male partner long-term and neither of you want to have a baby–or want to have another baby–male sterilization or a vasectomy can be a good choice. The other permanent choice is to get your own tubes tied, called a tubal ligation.

DORA: The next best methods of birth control are the pill, the patch, a vaginal ring, or a birth control injection. You can choose the method that works best for you. Some, like the injection or the patch you will to take every few months or every month. Others like the pill you’ll have to take every day. When you decide to become pregnant, these types are easy to stop using. You can pick what’s easiest for you to remember, and what you and your doctor, nurse, or other healthcare provider think will work best for you. No matter what type of birth control you pick, in order for it to work, you will need to follow the instructions exactly.

DORA: Male and female condoms by themselves are not good birth control methods–they are still better than nothing. However, male and female condoms are the ONLY thing that can protect you from getting a sexually transmitted disease. It is important to use both a condom and birth control if you don’t want to get pregnant and there is any chance at all that you might get a disease from having sex.

NARRATOR: To get a copy of the CDC Family Planning Methods sheet showing all birth control options, go to the resource section of our site at www.pregnancyanddisability.org/resources.

NARRATOR: The Principal Investigator was Mary Oschwald.

NARRATOR: These videos are copyright to Portland State University, 2016.

Video 3: Talking with Others About Pregnancy

NARRATOR: Pregnancy, Disability, and Women’s Decisions, an eight-part series on pregnancy and pregnancy decisions. Part Three, Talking with Others About Pregnancy.

NARRATOR: It can be hard to find others to talk to who understand what it’s like to be pregnant and have your type of disability.

SARAH: There are a lot of support groups and classes out there for pregnant women, but I found most of them very alienating in the same way that other neurotypical social events are alienating. They’re based on a set of assumptions about what your brain and body can do and what you want out of pregnancy and childbirth that may not apply to you. Also a lot of the advice for pregnant women is, is based on this idea of building the perfect baby, and if you don’t follow the rules, if you don’t eat, or drink, or take the medication, or don’t take the medication, or exercise, if you don’t do exactly what we say then the threat is that your baby might be born damaged. And, you know, you pick that apart and it’s really all about fear of disability and the idea that the worst thing in the world would be to bring a disabled baby into the world. Um, I found all of that–those messages very stressful to be around and the best thing for me was to just stay away from it. Um, the best support that I found was online, if there are disability related resources in your area then that might be an option but I found the conventional stuff not helpful to me at all, and so I stayed away from it.

NARRATOR: Not all women may have the same type of bad experience as Sarah with pregnancy support groups, but some might. Try to find pregnancy support groups that are respectful of your values and needs. It’s OK to leave a group that isn’t working for you.

NARRATOR: It can be good for any woman to talk through pregnancy decisions with other people. But it can also be hard for some women to find people they trust to talk to about pregnancy. Here are names of resources or types of people you could talk to.
You could talk to anyone at Planned Parenthood.
You could call 211, a national hotline for connecting people with resources, and they could give some advice on who to connect with.
You could talk to another women in a support group you may belong to, either in-person or online.
You could talk with your social worker, case manager, personal assistant, or other social service provider.
You could talk with any healthcare worker, like your doctor, nurse practitioner, or gynecologist.
And of course if you have a trusted friend or trusted family member, you can talk with them.

NARRATOR: Whether or not you find other women to connect with, at some point you’ll probably need to talk with someone about your pregnancy or pregnancy decisions. Sometimes people react well and sometimes they read badly. It can take courage to speak up.

E: I was afraid to tell my parents about my first pregnancy. I was only twenty-two years old and I was still in college. I was especially afraid of what my father would think or say. I was also afraid of what my husband’s parents would think. It turned out that everyone was very excited and ended up spoiling our baby very much so.

DORA: Sometimes people can have a bad response when you look female but you say you don’t have, don’t want, or don’t like children. I’ve had less of a bad response though as the years have gone by and women’s rights have improved. Don’t feel like you have to be a mother or even like children in order to be a woman or a whole person. Make up your own mind and be yourself. This decision is too important to let anyone or anybody else make it for you. I’m proud that I made my own decision, and I’m proud that I’m in control of my own life.

NARRATOR: There can be surprising good responses too. When we asked women with intellectual disability and autistic women to tell us their pregnancy stories, a lot of them told us about positive reactions. Sometimes talking to trusted people can be an important part of figuring out your own decisions.

WOMAN 3: My mom jumped up in the air and would not stop jumpin’ off the walls ’cause she was excited she was gonna be a grandmother!

WOMAN 4: For the father of the baby, his side of the family, he’s an only child…and his mother didn’t have any grandkids so she was more than excited to be getting babies.

WOMAN 5: I finally go to my dad and I said, “Dad, I’m pregnant.” And I said, “Dad, you’re gonna be a grandpa.” “What? I’m gonna be a grandpa.” I said, “Yeah, I’m pregnant, I’m three months pregnant.” “Oh, what?” He was like, “Congratulations that just made my day!”

NARRATOR: The Principal Investigator was Mary Oschwald.

NARRATOR: These videos are copyright to Portland State University, 2016.

Video 4: Managing Pregnancy

NARRATOR: Pregnancy, Disability, and Women’s Decisions, an eight-part series on pregnancy and pregnancy decisions. Part Four, Managing Pregnancy.

NARRATOR: Once you know you’re pregnant, you’ll want to get into get into prenatal care as soon as possible. You can get prenatal care from a healthcare provider such as a family doctor, an ob/gyn, an obstetrician, a nurse practitioner, or a midwife. You can call 211 or access 211info.org to access your state’s information service for referrals if you need a prenatal provider. You can also contact planned parenthood or your local health department. Your provider will discuss with you how to time your visits in order to have the healthiest possible pregnancy. Make sure you keep your provider up to date on any physical or emotional health changes you might experience during the pregnancy, like feeling tired, morning sickness, breakthrough bleeding, mood swings, or anything else that’s unexpected or unusual for you. Also, tell your provider about any mistreatment you might be experiencing from the baby’s father, or anyone else in your life.

NARRATOR: It can be helpful to communicate with other women with your disability who have been pregnant and are willing to share their stories about it; they might be able to give you insights on how to manage your pregnancy that someone without your disability wouldn’t be able to. But anyone who has been pregnant can be a resource about what can happen when you’re pregnant and have a baby. That doesn’t mean any of those things will happen to you, but it’s good to be aware of what’s possible.

NARRATOR: There are a lot of things to manage when you’re pregnant, like support needs, financial needs, work needs, and sensory needs. There also can be resources to help you manage these things. For example, friends, family, and services.

LETRICIA: I’m surprised is a lot of help is out there to help teen parents who have kids. Um, I reach out to people I haven’t talked to in years. Um, I asked for their advice, whatever, it don’t mean that you could take their advice, you can make your own decision at the end.

E: I was in college when I had my first son. My husband was still working on his masters’ degree and we still lived in college housing. There was a lot of worry about what we were going to do to make it work to get the things that this baby needed. Luckily our parents stepped in and supported us financially so we could continue our educations and raise our son.

NARRATOR: Not all women are as lucky as E. If you have financial worries you can call your local 211 help line, talk with your case manager or supporter if you have one, or talk to your prenatal provider to see if you can get WIC, TANIF, help with paying for prenatal and delivery care, or other services.

NARRATOR: Some women work while pregnant. That can add more things to manage during the pregnancy.

SARAH: during my first pregnancy I was working for a small non-profit that didn’t offer any kind of medical leave either paid or unpaid. And like a lot of people with disabilities or chronic illness I had already used up the little paid leave time that I did have on my own health and disability issues before I even became pregnant. So while I was pregnant it was very stressful to think about how I was gonna be able to afford to take the time off that I needed after the baby was born and still be able to pay my bills. I tried to negotiate as much as I could in advance. Ideally you should do this before you even get pregnant so that you can talk about, uh, paid leave policies as an abstract value, as the idea of keeping women in the workplace instead of having it be about your personal needs. It’s good to try to find allies in your organization that share those values who will help you advocate for better parental leave policies. It’s important to find out what kind of laws your state has about parental leave and what kind of benefits your employer offers. If you have a union you should talk to your union steward.

NARRATOR: To help things go more smoothly with work, talk to your supervisor about what you need and what support the workplace might offer. Find out if your work has insurance coverage for pregnancy and maternity leave. This might include short term disability insurance, or family and medical leave. Find out who at your work place is a good advocate for you and other women who might be pregnant. This might be someone from human resources, a union steward, a supervisor, or your co-workers. Talk with your supervisor about time off you might need for prenatal visits. Also talk with your supervisor about any changes or accommodations to your job. For example, you might need more bathroom breaks, to be able to sit down more often, or limits on how much you lift. You can get your doctor, nurse, prenatal provider, or other healthcare provider to write you a note for work about needing these things. Also, talk with your healthcare provider about how long you should stay at work, so you can plan ahead.

NARRATOR: Sensory issues might need special management during pregnancy.

PHOENIX: as an autistic person my personal bubble tends to be larger than most people’s. Unfortunately when you’re visibly with child you become regarded as a public commodity. Hypersensitivity issues are commonly associated with pregnancy, for example morning sickness. When you pair this with sensory processing disorder over-stimulation becomes the rule rather than the exception. You can expect for people to encroach on your personal space but carrying someone inside of you does not make you any less worthy of autonomy. The onslaught of stimuli can make an already challenging environment downright inhospitable. For me it was too much and I slipped into some agoraphobic habits. In times like this it’s key to remember that getting yourself outdoors and involved in the community is good for the health of your baby.

NARRATOR: Ask for what you need when you are pregnant. Your health and the baby’s health is important.

NARRATOR: The Principal Investigator was Mary Oschwald.

NARRATOR: These videos are copyright to Portland State University, 2016.

Video 5: Coping with Discrimination, the Legal System, or Mistreatment

NARRATOR: Pregnancy, Disability, and Women’s Decisions, an eight-part series on pregnancy and pregnancy decisions. Part Five, Coping with Discrimination, the Legal System, or Mistreatment.

NARRATOR: A lot of the women we talked to told stories about being treated badly for having a disability, or for other things about themselves like their race. Discrimination exists, but it is not right. It is also not your fault if it happens to you. Connecting with others who have had similar experiences, and talking to people in your support network can sometimes help too. You are not alone, and you are not to blame.

SAMONA: I experienced a billing clerk at the hospital that was rather rude and, um, told me having a baby isn’t free and that I was going to be paying something, what did I think that this was a free ride? Um, fortunately I had great insurance, a primary and a secondary to where I didn’t have to pay out of pocket actually. And, um, that interaction stayed with me, I found her to be, um, something of a racist, or some–in some form or fashion. Um, she kind of treated me like a black girl in poverty and looking for a hand out, um. Treated me like I was ignorant.

ELESIA: my husband and I decided to raise our son using American sign language and only American sign language. By the time he entered preschool we had lots of concerns about when are you going to teach him English, what’s he going to do, how is he going to fit into society. But it turned out he learned English just fine and very quickly in preschool. He is now in high school with a three-point-five GPA so I’m pretty sure everything turned out okay.

SARAH: disabled people face discriminatory attitudes about what we can and can’t do all the time, and often that’s framed in terms of concern about our health and that’s called ‘concern-troling’ and it happens all the time, and being pregnant is not any different. When I got pregnant for the third time I was forty-one years old and a lot of people around me thought that that was too old for me to be having a baby, that it was gonna be too hard for me, and they didn’t support the fact that I was having another child. Um, one member of our family offered to pay for an abortion in front of my other kids who were already very excited about having another baby brother. Um, there’s no reason that disabled people can’t be pregnant and have children we just need different support than other people, and don’t let other people talk you out of it or say that it’s too difficult. You just need to find the support you need and get it.

NARRATOR: Many doctors, nurses, midwives, or other healthcare providers are kind and sensitive to discrimination, but others are not. We recognize that the way some providers view disability negatively, provide counseling about disability, or can make women with disabilities feel bad about themselves is a problem.

SARAH: In my experience with genetic counseling the entire purpose of the counseling was to prevent disabled babies from being born. They’re looking for anything that doesn’t seem normal, if they find something that doesn’t look normal than their goal is to either fix it or eliminate it. They’re trying to essentially keep disabled people from being born, reduce the number of disabled people in the world. Doctors are trained this way and these attitudes run so deep that they’re invisible to them, they don’t even realize that they’re doing it. Um, it’s based on this underlying hatred of disability and fear of disability, and it can be very difficult if you’re disabled yourself to receive care from a provider who in every interaction with you is communicating that you shouldn’t exist that, that somebody like you shouldn’t be born. Prenatal visits are all set up around this idea of reassuring you that your baby is developing normally and the doctor always makes it clear that their goal is to bring normal babies into the world. And that if your baby–if anything about your baby is not normal than that’s something you should be worried about. And it’s very hard to hear this at every visit if you know yourself that you’re disabled and there are things about your brain and your body that are not normal. And it’s okay to be disabled, it’s okay to have a baby who’s disabled, it’s okay to be outside the norm, but that’s not what these doctors are telling you when you’re pregnant and it’s very difficult to hear this at every visit.

NARRATOR: Not all women have this experience. Many women have a good experience with their providers, and there are good providers who do not discriminate badly in the world. If your provider is making you feel bad, it is okay to change to a new provider who does not make you feel that way.

NARRATOR: The child welfare system is another place where discrimination can sometimes happen.

SONJA: I had a bad experience with child welfare. I got my kids taken away from me just because I have an intellectual disability. I jumped through the hoops, it didn’t matter. I just wanna tell women out there not to get a court appointed lawyer. Make sure you get a lawyer that will be on your side. Looking back I realize that I needed help with the legal system. It also could’ve helped if I had shown them that I had support from family and other people in the community.

NARRATOR: It can be confusing knowing who to go to for legal advice. Find someone you can trust if you need to talk about legal issues and child custody issues. Perhaps someone in your support circle, a family member, or your caseworker can help you find a lawyer whom you can trust. You deserve to get the help you need and this include help with legal issues.

NARRATOR: Unfortunately, a lot of women have experiences being abused during pregnancy.

WOMAN 6: I was being kicked around by my first two sons’ father and another, another man that I met and, and uh, kind of abusive situation, real abusive at first, abusive situation.

WOMAN 7: I was with a violent man and so I was living in domestic violence shelters on and off my pregnancy. I lost my job while I was pregnant and, you know, I didn’t know what I was gonna do.

WOMAN 8: The father of the baby made it harder for me to stay healthy. He would tell me I wasn’t good enough. I would never be anything.

NARRATOR: No one ever deserves to be abused, and being abused during pregnancy can hurt both you and your baby-to-be. This includes hitting (especially hits to the belly), slapping, choking, being forced into walls or doors, being threatened with any kind of weapon, or being forced to have sex. But it also includes non-physical abuse, such as stalking, harassment, threats about you or the baby, being called names, interfering with doctor visits or doing your job or going to school, being lied to and insulted, pressuring you to drink or do drugs, and more.) Sometimes the abuser is jealous of the attention the unborn baby is getting, or he believes it is not his child. Tell your prenatal provider if you are being abused. Help is always available 24/7 by calling the Domestic Violence Hotline at: 800-799-7233. You can also text the word GO to 741741 in order to reach the Crisis Text Line.

NARRATOR: The Principal Investigator was Mary Oschwald.

NARRATOR: These videos are copyright to Portland State University, 2016.

Video 6: Health and Pregnancy

NARRATOR: Pregnancy, Disability, and Women’s Decisions, an eight-part series on pregnancy and pregnancy decisions. Part Six, Health and Pregnancy.

NARRATOR: In addition to keeping all of your prenatal visits and following your provider’s instructions, here are five tips for staying healthy during your pregnancy. One, eat a healthy diet. If you need help with this, your prenatal provider can refer you to a nutrition specialist to find out what this means for you, because “healthy diet” means different things to different people. Two, continue avoiding smoking, drinking, or illegal drugs, and if you need help with stopping, tell your provider. Three, be sure your provider knows about all medications and supplements you ever use, including over-the-counter medications, vitamin supplements, and homeopathic and herbal remedies, including those you eat or drink. An easy way to do this without having to remember it all is to just bring in the containers of everything you take when you see your provider. Four, get moderate exercise (an average of thirty minutes five days a week), unless your provider tells you not to, because this will help protect your mental and physical health. Your provider can give you exercise guidelines if you need them. And five, be as safe as possible! If someone is abusing you in any way or you feel unsafe, or you’re afraid that the baby might be unsafe, tell your provider or someone else you trust.

SAMONA: When I was pregnant I did a lot of things to stay healthy. Um, I joined water aerobics and loved that because it’s so free-flowing and feels great on your body, less tension, ah, on your muscles, just being in the pool, the baby loves the movement of the water and it’s just very relaxing. Plus a community of good fun people to spend your mornings with. Um, I also ate healthy, a lot of baked chicken and rice, vegetables, fruit, and, um, I kept my stress down by doing activities with other mothers of small children, going for walks in the park and laughing a lot and enjoying my time of being pregnant because it goes so fast.

SHERRI: Because want to be good mom I started take better care of myself. I decided to eat healthy, eat lots of chicken and fish, eat lots of salad, drink lots of water. Bad habits, hamburgers and pop, is not good for you, but drink lots of water.

NARRATOR: Some women use pregnancy as a reason to quit smoking, drinking, or doing drugs. For example, one woman said:

WOMAN 9: I quit smoking cold turkey as soon as I found out I was pregnant. I really wanted to make sure I did the best thing I could do. I didn’t wanna feel like, you know, once my baby was born if there were health issues or anything else look back and go oh my god, you know, I was smoking cigarettes while I was pregnant and I cause some trauma to my child.

NARRATOR: Another woman told her story:

WOMAN 10: When I got pregnant I took myself off the drugs. I got myself clean. Because I realized that I’m having a baby, I can’t do this anymore. And then when she got out, you know, everything changed. I’m clean and sober, I’m not drinking anymore, I’m not doing drugs, I have more to look forward to, you know, I have a beautiful baby girl out there that needs mommy.

NARRATOR: If you do quit smoking, drinking, or doing drugs when you get pregnant, it’s important not to go back to them again after the baby comes. Your health is always important.

NARRATOR: The things you do to stay healthy while pregnant can turn into ways to stay healthy for the rest of your life. For example, Sherri learned new cooking skills.

SHERRI: I went to PCC but I’m sure PSU have it too if you want to learn to cook they show you how to cook spaghetti, whatever you wanna learn. Meats or whatever you want, going to school. It’s kind of fun. But I have more fun to cook now. I cook a lot now. When I feel good, I’m happy being a mom.

NARRATOR: The Principal Investigator was Mary Oschwald.

Video 7: Motherhood and Looking Back

NARRATOR: Pregnancy, Disability, and Women’s Decisions, an eight-part series on pregnancy and pregnancy decisions. Part Seven, Motherhood and Looking Back.

NARRATOR: The decision about whether to have a baby and be a mother can change the direction of your entire life. Years ago, people used to assume that all women wanted to have children and any woman who didn’t want kids would have been labeled an outcast. On the other hand, as we’ve seen in this video series, women with disabilities are often discouraged from having the children they want to have. We hope this series will offer support and encouragement for whichever decisions you make.

NARRATOR: When making your choices, ask yourself: Do you want to get pregnant in the next year? Would you want a baby even without a life partner to raise the child with? What would you do if you had a life partner who left after you had the baby? How will you support the child financially? Do you have family and/or friends who would be able and willing to help out? How will you manage physical or emotional difficulties that come up during or after the pregnancy? What other things do you want in life that might be harder to get if you were a mother? Is motherhood something you feel you truly don’t want to miss? If you want to start a family but now isn’t the right time, what do you want to do to keep yourself from getting pregnant?

NARRATOR: Take your time to think about these questions, because they’re important questions for all women, not just autistic women or women with intellectual disability.

NARRATOR: Most women find raising a baby is harder than they thought it would be. When we asked women what they would have liked to have known before getting pregnant, a lot of them said they wished they’d known how hard it could be.

WOMAN 11: I would like to have known more about havin’ a family, what it’s like to raise a baby instead of just jumpin’ in there and have to find out by myself and, um, the long haul of raisin’ children. Their wants, their needs, their talking to, um, helpin’ them with their dreams. It’s a lot. And when you’re doin’ it by yourself it’s not easy.

WOMAN 12: I think I grossly overestimated my ability. I thought it was gonna be a lot easier. I, I thought I was gonna be able to be there twenty-four seven, constantly givin’ my kid a bath because they spilled something on themself, doing laundry all the time and running to doctor’s appointments and dealing with spit-up. I mean as far as the basic stuff, diaper changes and the feeding, doing the breast feeding really did make things easier, I didn’t have to deal with mixing the formula or any of that junk so that did simplify things for me. But I really thought that I was gonna be able to pull it off a lot more easily.

WOMAN 13: It wasn’t as fun I guess I would say as I thought it was gonna be because all of all the screaming and crying and diapers and all that but it got easier as, you know, as they got older.

NARRATOR: Having and caring for a baby can be hard, but you do not have to do it alone. Everybody needs support. You can be a good and independent parent, and you can make your own decisions, even while getting support. One woman gave us this advice in her own words.

WOMAN 14: Two girls it’s kinda hard, it’s not easy. A lot of people say, “aw, it’s easy,” it’s really not easy. You just need the support around you that’s all.

NARRATOR: The women in these videos have this advice to share.

SONJA: I walked, I take prenatal pills, and I ate, and I went to doctors appointments to take care of my baby.

E: If I were to give advice to others like me it would be to follow your heart as well as to get as much support as possible in place before your pregnancy.

DORA: Your life, and your body, are yours. Be honest with yourself about your needs and about your wants. Don’t let anyone or anything pressure you into anything that you feel isn’t one hundred percent for you.

SHERRI: Get advice, make your own decisions.

NARRATOR: Parenting can be very difficult and this may or may not be the right time to try to get pregnant. Many women – with or without disabilities – choose not to become pregnant. And many women – again with or without disabilities – have successful pregnancies and are great mothers.

SHERRI: I thought taking care of baby, I thought it would be hard. But also, it’s fun.

LETRICIA: it’s good to set a routine for you and your kids so it won’t get you and your kids off track exactly how I did at first I didn’t have a route for me and my kids until put me and my kids on a routine, and it helps out a whole lot in our life. And now it will be less stress for me.

LETRICIA: It’s okay to, uh, to take, um, time out for yourself, um, it’s–most parents won’t take time out for themself because they’d rather be around their kids twenty four seven, but you have to take time out for yourself so you won’t be as tense and stressed out because you don’t have time for just yourself because when your kids is asleep or anything that’s your break right there when they not–nowhere next by you or anything, that’s your time for yourself.

LETRICIA: I learned a lot as being a mom, I’m pretty proud of myself, um, I wanted to give up sometimes but I look at my kids and rather for my kids to be happy and to see them–to see me struggle–but I pull through just to see my kids happy and I would never give up on my kids.

NARRATOR: The Principal Investigator was Mary Oschwald.

Video 8: About This Series

NARRATOR: Pregnancy, Disability, and Women’s Decisions, an eight-part series on pregnancy and pregnancy decisions. Part Eight, About This Series.

MARY ANN – Hi, my name is Mary Ann, and I’m a nurse. I been narrated these videos, and I helped work on the research study that put them together.

MARY – This video series was created as part of a grant from the National Institutes of Health. We wanted to learn more about the pregnancy decisions and experiences of people with intellectual disability and autistic people.

KHAKI – To do this research and make these videos, researchers from Portland State University and Oregon Health and Science University worked together with females with intellectual disabilities and autistic females.

GROUP – We are members of the research team.

Sonja.
I’m Andee.
I’m Annie, also known as Furball, Ball of Fur, or Furra.
I’m Dora.
I’m Khaki.
I’m Sherri.
My name is Mary.
I’m Mary Anne.
And I’m Christina.

SHERRI: We interviewed fifty one females, and forty who had been pregnant and eleven who not. We thank our them for their time and stories.

CHRISTINA: We learned from them that they felt alone, often felt discriminated against, and had a lot to deal with in their lives. But we also learned from that they felt that they were independent, made good decisions, and are proud of what they have accomplished.

SONJA: These videos include their stories.

ANDEE: They also include the stories of some of the people on our research team. We hope that you find these videos helpful, if not for you, then maybe for someone you know–or perhaps for a group you belong to. You can always reach out to others for support and assistance and we encourage you to do so.

ANNIE: We wish you the best in making your own decisions.

GROUP – Thank you for watching, listening, and reading.

NARRATOR: The Principal Investigator was Mary Oschwald.