1 Captions by Julie Taylor. Edited by Tracey Dawson. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2017 For birth parents, making an adoption plan for their child can feel like a death. They're losing their child. (GENTLE PIANO MUSIC) It's going to be the hardest thing that they've ever gone through. I don't care what kind of disability you have; I believe that every single person in this world brings worth. (PHONE RINGS) National Down syndrome Adoption Network. This is Stephanie. Absolutely. Yes. So, um, you've called the right place. I am the director of the National Down syndrome Adoption Network. When families get a diagnosis of Down syndrome, we talk to them about parenting, we make sure they have updated information. And the other` the good thing is I am a birth parent; I do have a child with Down syndrome. I love helping people. I love helping families. I especially love helping families who get a diagnosis of Down syndrome, cos I've been there. I was told, um, that my son had Down syndrome after he was born, and I remember feeling, um, he was not the same child that I was carrying through pregnancy. When there's a prenatal diagnosis, medical professionals are like, 'Oh no. Just` Let's just terminate. 'You know, Down syndrome ` there's no quality of life there.' All right. You're welcome. Thank you. OK. Bye-bye. When expectant families, or birth families, call me after receiving the diagnosis, um, you're catching them at a time when they're just in a lot of grief, and they've just been handed information that they know nothing about, so it's my job, it's my responsibility to make sure that they have updated information. (GENTLE PIANO MUSIC) When they want to make an adoption plan, we have a registry of families who want to adopt a child with Down syndrome. I'm that connecting point between the expectant and birth family and the adoptive family. They always say it's, you know, kind of unprofessional to get emotional, but there are quite a few times when I have families and they're just crying and crying and crying, and I'm crying with them. They just take me back to that place of being told they have this diagnosis, and they don't know what to do with it, and they don't know what the future's gonna be. (GENTLE PIANO MUSIC CONTINUES) What are you doing? Hi. How are you? Hi! How are you doing? (GASPS) Hi, sweetie. (KISSES) Hi. Most of the adoptive parents just have this very strong calling. They just call me up or they email me and they say, 'This is what we were meant to do as a family, as a couple. 'We were meant to adopt a child with Down syndrome.' It's good to see you. Hi, Steph. CHILD: Hi. Very cool puzzle. Hey. What is that? Hmm? Ooh. We have eight children, ages 22 to 2. Annie we adopted, um, when she was a newborn, so we've had her since, um, October of 2012. STEPHANIE: Very cool. This looks like your favourite book. Annie had a lot of medical issues. We spent a lot of time in the hospital, with doctors' appointments, and a few times not knowing where she was gonna end up. She had open-heart surgery, at` just before she turned 2. Since then, now her health is amazing. (LEO BABBLES) GIRL: Sisters. And then Leo we adopted when he was about 14 months, so we've had him since September of 2015. It was` It was different adopting a child that was a little older, cos he was a toddler, and Annie was a newborn. He had been with his birth family in China, so he was very bonded to them. (GIGGLES) Well, one, he didn't speak English ` he spoke Chinese ` and then he'd wake up in the morning very confused and overwhelmed, and then he was very depressed for the first four to six weeks. He kind of gradually came out of it as he started to learn the language. We noticed a pretty big difference with him after three months of him being with us here. He started smiling more and laughing and reaching out for us, and just the small movements towards bonding with him. (BABBLES) With Annie, it really was not any different. I couldn't imagine anything... I couldn't imagine life without 'em now. I can't wait to adopt when I have my own family. I think I'm safe to say that we're all, like... (CHUCKLES) We're going to adopt. They see the world through eyes that we could never even imagine. Um, they` they don't see anything bad in the world, they just see all the joy and the happiness, and it just gives us... They` They give us the ability to see it through their eyes. You just learn to appreciate, like, the really little things in life. You can't help but smile when you're around them. (CHUCKLES) We don't really focus on what they can't do, we just let them be who they are, and they always surprise us. (CAR ENGINE STARTS) (LAUGHS) Hi. Call` I haven't heard anything, sorry, but I wanted to check in, um, cos... just to let you know everything's been sent. She` One thing she had always said to me was, 'I need to make sure that I know without a shadow of a doubt that this is the family for my baby.' As soon as I hear from her, I'm definitely gonna call you. Yes. Yeah. Absolutely. All right. Sounds good. Thanks, Megan. OK. Bye-bye. The decision-making process for expectant families and birth families is heart-wrenching. It's really emotional, because I'm sending them a family profile, so it's` it's` it's literally a visual. It's pictures; it's information about these families that they don't know anything about, that may be potentially taking care of their child, and being their mom and dad for the rest of their life. Perfect. (CHUCKLES) WOMAN: What are you doing, um, Steph? So, right now I'm gonna go to the airport and pick up adoptive mom Megan. Megan and her family have been on our registry for a few years, and I'm so excited to be able to meet her today. They're a beautiful family. They're young, they have four incredible children by birth; none of them have disabilities, and I was so excited to get them on. They were open to all medical issues, any gender, any ethnicity. They were ready to go, and I was ready to call them, and we're here over two years later. They've been through so many situations where they were chosen, and then the family decided to parent. (WARM, GENTLE MUSIC) We were chosen by one family who, um, right up front said they weren't for sure they wanted to do an adoption plan, and so we just, uh, walked with them for several weeks as they made their decision knowing that they may not, um, choose to place. And so they ended up deciding to parent, and that was sad for us but not, um, not to the point of` of devastation, like our recent... Um, we had one recent failed adoption where, you know, it was two days after she was born. Um, the plan was still adoption, so I-I got to have skin-to-skin contact with her, and then` then I stopped visiting her in NICU when, um, the plan was up in the air again. And then, um, we were asked to bring her home from the hospital, um, and do all that was required for that, and so we had her all afternoon and all through the night, and then through the next day, and then had to... (WHISPERS) had to give her back, and that was... That was by far the most devastating experience for me. My heart was just slashed. I don't blame the birth mother. She did what she had to do. There are people seeking to eliminate Down syndrome like it's some kind of disease, and it's` it's not a disease. They're just killing people, and I-I don't think that's right at all. Cos I remember there were a few times that you called me, and, um` Cos it's hard` it gets hard when you just keep waiting. The waiting is hard. Yeah. Yeah, and I'm... Yeah. Yeah, cos it's indefinite. We need people with Down syndrome in the world, just like we need redheads; we need, you know, those who are in wheelchairs; we need those who have hearing impairments. I can't imagine, um, this... Gattaca-like state of just everyone being the same. Um, because... could you imagine if we just started filtering out? 'OK, well, let's start with Down syndrome,' and then 'Well, let's start with the aged. 'OK, let's start with, you know, oh, you have cancer?' And, um, you know, and it's... 'And then let's go ahead 'and start with, oh, you know, yeah, let's go ahead and start with folks in wheelchairs, 'then we can get rid of those resources.' I just... The next thing you know, you're gonna have a small group of people who are all the same. There's just a lot of fear, I think, surrounding kids with disabilities, and what people think lives should look like. I think ultimately they're robbing that person of a chance at life, and they're robbing their parents of the opportunity to parent. WOMAN: Megan, what do you hope will happen next month? We are hoping to transfer an embryo with Down syndrome into my womb, (CHUCKLES) and hoping that it will implant and grow to a full-term baby. This will be the first time in history that an embryo with Down syndrome has been implanted into someone. Um, and I can't believe that we're` that we're part of it, and that I know the person that's gonna get it done, but I also know that, you know, they're such a wonderful family, and I'm just so beyond excited for them. And` And it, um` it's scary, though, cos I know there's risks, and I` and I don't even wanna think about that, um, because Megan has` Megan and Andy have been through so much. Back` You know, even just a few years back, the embryos with Down syndrome were getting destroyed. Right. That's just what they did. I'm very excited about growing the child that we've been waiting for. At the same time, I-I can't put my hope on a particular outcome, knowing the risks involved. I am so, like... so excited that there's an agency out there who is taking donations of embryos with Down syndrome. This is historic worldwide, that this will be the first time an embryo with Down syndrome has been implanted. My son's, you know, almost 25 years old. When he was born, he looked healthy, he was beautiful. Um, he looked perfect to me. But the one thing that I remember ` I remember the light in the room; I remember exactly what the doctor said to me. The, uh, house paediatrician at the hospital, uh, just came in and, you know, asked if I was sleeping, and I said, 'Yes,' and he said, 'Well, your son is a candidate for Down syndrome, 'and I hope you feel better,' and he turned on his heel and walked out. Um, so that's how I got the diagnosis. I was left there alone with these... this incredible news, this life-changing news. It was frightening, um, and I knew nothing about Down syndrome. I didn't know what it was. I then started grieving not for myself as a mother but for him, because I didn't know how he was going to be treated, so I just thought of all these things that no one was gonna accept him for. Would he go to prom? Would he join the Boy Scouts? Would he graduate? Would he get married? Would he have children? I bonded with him immediately. Yeah, because... (CHUCKLES) You know, when was born, um, he just... I don't know. He was just` He was my son, and so when they told me that he had Down syndrome, you know, of course it's heartbreaking, and, uh, um,... and it hurts, but you hurt for him. But he's... (VOICE CRACKS) you know, he's my son, so it doesn't matter to me. And I knew he... he was mine, and I was gonna care for him, and love him unconditionally for the rest of his life. Daddy! (INDISTINCT CONVERSATION) No, actually... Actually... Actually what? (LAUGHTER) OK. OK. Chrissy, OK. What are you calling me again? What's my name? That's Daddy and Mommy. (GASPS) Mommy. Yeah. You haven't called me Mommy in... nine years, Chrissy. OK. OK. Am I Mommy again? Yeah. I'm so happy. I'm very, very, very, very happy. All right. Love you. Yeah. That's my boy. (CHUCKLES) So, my son, Chris, is 25 years old, and for the last 10 years he's been living, um, away from us in a facility. He was diagnosed with Down syndrome, but he also has severe anxiety and severe behaviours, and he is one in six in the world. So, luckily the place is 15 minutes from us, but for the last 10 years, he's been living in a facility that is able to care for his needs 24/7. Do you wanna go see Chris today? Yes. You making me a hot chocolate? I am. Yes. So, I was thinking he's been in a good mood lately, and, um, I think we oughta try to get him out. You wanna try it? Yeah. It has been a while since he's wanted to go out with us. Um... Since July. Yeah, so we're either gonna be five minutes or two hours with him today. Great. In July he seemed so different. It's the best summer we've had with him, that` you know, that month. Yeah. And then all of a sudden, he switched it back off again. Chris' disabilities... is` His main issue is his behaviours. Uh, Down syndrome in itself is` is really not an issue for us. I mean, there's a lot of, uh, ord` you know, people with Down syndrome that are, uh, very good self advocates; uh, they live out in the community on their own or with very little assistance. And I think really Christopher could do that if he just didn't have these behaviour issues. (ACOUSTIC GUITAR MUSIC) He` He's pretty violent. He's... injured several people that have tried, you know, to hold him. He's broken noses before. You know, he's` he's hit me before and almost knocked me out. He was very typical as a kid. He actually was included in, you know, the regular school system. He would get up in the morning and walk out to the bus stop on his own and get on the bus until he was about 14 years old. WOMAN: What happened? Well, when we walked in, initially we thought he was gonna be OK. He seemed pretty receptive to our visit, and Steph started to get ready to give him a shower. It looks like he threw up all over himself, so I'm not sure if he's just not feeling good or if he overate... Yeah. ...and, you know, gorged himself, which he's done that before, right? Mm-hm. WOMAN: And what happened? Well, I was gonna, uh, take him to get him some clean clothes, because I can't take him out with vomit all over his clothes. Yeah. And I asked him if I could take his, uh, Spider-Man shirt off,... Mm-hm. ...and he didn't want to, so he attacked me. Oh. Oh well. Yeah, that sucked. (CHUCKLES) I constantly try to think in my head, you know, 'What can we do? 'How can we figure him out to improve his situation?' After 10 years, it just kinda grinds on ya, kinda wears you out. I think that's where Stephanie has trouble with it. Come on, buddy. Come on. Jacky! Come on up here, buddy. Chris' life, to Chris, is good. Chris' life for me, as a parent, is, um, extremely sad. It's very, very hard to take, as a parent, because he sees himself protected and not going anywhere and sitting in this room. I see him, you know, not getting out into the community; um, not just being a young, typical man with Down syndrome; um, not engaging, uh, with peers. He's not employed; he doesn't have his own place; um, he doesn't have this quality of life that I want him to have. And it's heartbreaking, uh, to see your son, you know, dressing in layers in summertime and wearing headphones all the time and not wanting to go anywhere and only wanting to see you for 30 seconds, and then, you know, slamming his head against the wall if you won't leave immediately. That's, um... It's very, very hard for` for me, as` as that being his quality of life. It's kind of the way I relieve my stress. Um, it gives me something to take my mind off of, you know, stress of dealing with him when he's not having a good day. Uh, if we go and we have a visit with him and it's a great visit, then Steph and I usually have a really good day, but, you know, on days like today when we have a bad visit, it's` it's really hard. She kind of shuts down a little bit. She doesn't want to talk. But I have to get going, I have to move. It's the only thing that makes me feel better. It's almost like all this extra energy from wanting to solve a problem that I can't solve. We have been seeing Carrie, our therapist... Well, since Chris started going through this we were connected with her, and it just really helps just to be listened to. The fact that we have each other is worth the world to` to me, anyway. It's really hard for a lot of parents, you know, to go through these situations, and I... it's caused a lot of divorces. If I was doing this by myself, I can't even imagine where I would be. I thank God every single day. The first thing I do is I wake up and I thank God for Jon. Yeah. Yeah. WOMAN: That's so lovely. (CHUCKLES) I know. It's pretty awesome. I really like him a lot. (CHUCKLES) You awake? Hi. WHISPERS: Get down. Get down, buddy. You OK? (MUMBLES) Uh, no. Jackson keeping you warm? You don't want to sleep too long. I know. It's just... Go lay down, buddy. Go lay down. If you sleep too much right now, you're not gonna... You crying? No, I'm just` It's just really hard today. That's all. That's OK. Well, he was sick and I can't take care of him, so... He's never sick. I think he overate. I know. I wanted to be the one to change his clothes, cos now I know he's clean. TEARFULLY: And, like, I want to wipe the vomit off of his face, but I can't. He wouldn't let me do that. So... You know, we have to rely on other people to take care of him, and then... It is crushing. (SNIFFLES) Hi, this is Jon, Christopher's dad. WOMAN ON PHONE: Yes. Hi. I was just wondering, um, how he's doing. Is he doing any better than when we were there? Were you there when we were visiting? Yeah, I was. Um, he's... he... We coaxed him into the shower,... Oh! ...and we washed him off as well as we could. Great. Fantastic. (SPEAKS INDISTINCTLY) OK. And we got him in the shower, washed him off, got him back down in his room. We did notice a scratch on his leg. Did the nurse call and tell you that? All right. Thank you. We appreciate it. Back 10 years ago, when we brought a team in ` psychologists and a psychiatrist and all of these behaviour interventionists ` what was` what was incredible was the psychologist looked at me and said, 'You have post-traumatic stress disorder,' and I said, 'No, I don't.' She said, 'Yes. You're not remembering anything. You have severe chest pain,' and she said, 'You're having trouble breathing.' There you go. (SOFT DRINK CAN OPENS) 'What you're doing is you're internalising this, and you need help.' (SOMBRE MUSIC) (SOMBRE MUSIC CONTINUES) I did go through six months of intensive holistic therapy. I actually consider it a blessing, cos what I do is when I have expectant parents and birth parents that I'm talking to and I can hear them, you know, just catching their breath and just really being upset, I teach them the techniques that I have learned. I will die early (CHUCKLES) if I think about my son... you know, sitting in a room in the dark with layers of clothes even in the summertime, screaming at me, slamming his head into the concrete; and, you know, if I go see him and all he does is sit in his room. And if I think about that and think about that, I will die early. Right now I'm in this period with Chris where I've put hope on the back-burner. It's just too hard for me. I've gone through 10 years. I need a break. I want to have hope for something, so I have hope for these families. You know, I have hope for these expectant families and birth parents who call me, and they want some kind of hope. I'm playing a role in the future of Down syndrome in my work. I mean, I'm helping these families. Families call me; they're wanting to go two ways. They're wanting to parent or they're wanting to make an adoption plan. Come on. Go this way? Let's go, baby. (REFLECTIVE MUSIC) Sweetie. And I can lead them on the way to parenting. I have an email from a birth parent who made an adoption plan. It's just... Yeah, it's just beautiful, and she wants to share it with other families. 'I found out I was pregnant a whole three weeks in, 'unfortunately with a man whom I was just barely getting to know. 'We had a rocky start given the situation, but we were able to work things out to co-parent, 'and both be there equally for the baby. At 22 weeks pregnant, I was told my baby had an AV canal defect. 'At 26 weeks, it was confirmed. 'She also more than likely had Down syndrome. 'To top it all off, at 27 weeks, I was told termination was still one of my options. 'I will never say a woman doesn't have the right to decide what is best for her situation, 'but hearing them offer that to me made me feel like my baby didn't matter. 'All of a sudden we weren't just bringing home a cute bundle of joy, 'we were going to be bringing home a cute bundle of joy 'who we knew would need so much more than we could ever provide. 'At 30 weeks, we made an adoption plan to ensure that our baby would have the best chance 'at being as high-functioning as possible. 'Some may think placing a baby with special needs is easier than placing a typical child. 'I beg to differ. 'Placing your baby in the arms of someone to love and cherish is the hardest thing anyone will ever do, 'but when you make the decision to place your baby with special needs, 'you're putting even more faith into their family; that they will advocate and fight for that child 'in every way you would want. 'At 39 weeks and six days, I finally got to hold my baby. 'Even with all the extra challenges I knew we would face, giving in to our love for her 'and having what they call a change of heart and deciding to parent her 'would have been the easy thing to do. 'The day after I came home from the hospital, I already missed her more than anything in this world. 'In moments where I try to tell myself I should have raised my baby, 'I stop myself and remember how good it was to see her family holding her themselves for the first time. 'They already loved her just as much as I did. 'I may be sad. I may wish she could have come at a different time in my life, 'where embracing her special needs would have been something I could do, but at the end of it all, 'I am proud I made the decision to give her the best life possible, 'even if that means watching her grow in the arms of someone else.' Absolutely beautiful. Yeah. Ready, buddy? Come on. (SNIFFLES) All right. Let's go. A couple years ago, that blood test came out where they could, you know, test for Down syndrome at about 10 weeks, and I was really worried, cos I thought, 'The phone's gonna stop ringing,' um, and that has not happened. So I do, I have hope that there are going to be children with Down syndrome in the future, yes. Copyright Able 2017