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Effective Compassion: Extra needs, special love - S4.E9


WORLD Radio - Effective Compassion: Extra needs, special love - S4.E9

Families share their unique calling to care for children with medical challenges

The Pederson Family Photo by Lauren Dunn

PEDERSON: (child) I haven’t held Mariah in a long time! [Micah] What, honey? [Child] I haven’t held Mariah in a long time. [Micah] I hear ya, I would love to give you a turn when she’s awake. [Child] She’s awake. … [Child] Can I sit by Avery? Can I sit by Avery? [Micah] Sure. [Child] And Mariah? [Micah] Yep.

In many ways, the Pederson home looks and sounds like the household of any family with young children. A Bluey toy lies on the floor. Children play and squeal.

But in other ways, the Pederson home isn’t like most other homes. You can tell that before you even walk through the front door.

Right by the doorbell, a sign says OXYGEN IN USE. Inside, an oxygen cord snakes through the house, trailing behind a busy toddler as he crawls around the living room.

The Pedersons aren’t exactly experts on medical needs. Silas teaches middle school and high school math. Micah taught one year of special education before staying home with their kids.

PEDERSON: (Silas) It's not something that we had any medical training in. There were multiple times that we had kids come to our home and we didn't know how to use machines or machines were missing parts. And so we would be looking on YouTube to look up how to use things or going to the ER and asking the personnel there, ‘Hey, show me how to use this or what it is.’

The Pedersons are licensed as a medical foster home. That means they’re required to complete extra training hours. But that doesn’t always give them the information they need to meet their foster kids’ particular needs. Sometimes hospitals teach them the ropes about a child’s care before discharging the child to them.

But figuring out medical needs and machines isn’t the only tricky thing about fostering and adopting children who have special needs.

PEDERSON: (Micah) We never once have gotten the child or the needs that we expected or were told we were getting when we've welcomed kids into our home. It's oftentimes more than we were told about or every now and then less than we were told about. But there's just a lot of importance and having an open heart and having expectations of not having expectations and being willing to to learn the individual kids needs and what that's going to look like in your home. Even just in the day to day stuff. You can't always have a nailed down expectation of what it is going to look like when you're loving on these kids who have extra needs.

Extra needs. So far in this season of Effective Compassion, we’ve seen how Christians are working to meet the needs of children whose families are unable to care for them. But what does it look like to care for children who have, like Micah said, “extra needs”? How do Christians help in a way that’s challenging, personal, and spiritual?

From WORLD Radio and the creative team that brings you The World and Everything in It, this is Effective Compassion.

I’m Lauren Dunn.

UNDERWRITING SPOT: Effective Compassion is made possible by listeners like you. Additional support comes from World Help, a Christian humanitarian organization working to deliver food and Bibles to starving, persecuted Christians in North Korea, one of the most dangerous nations for Christians. A gift of $20 sends a Bible and a week's worth of food to a North Korean brother or sister. More at worldhelp.net/podcast.

Silas and Micah Pederson married the summer after their college graduation. Nearly nine years later—both in their early 30s—the couple has seven kids. Three are their biological children, three are adopted, and one is their foster son.

PEDERSON: (Micah) Currently all but two of our children have pretty significant diagnoses that they're facing. We have autism, fetal alcohol syndrome, a couple rare genetic conditions, cerebral palsy, and with a lot of those, they're all kind of umbrella diagnoses like it's for XYZ genetic condition, and then beneath that, you end up having a bunch of other things that end up with a diagnosis. You know, swallowing disorder, or airway disorder, that kind of thing. So it ends up being a lot of diagnoses.

Micah always knew she wanted to adopt children with special needs. Silas had to think about it.

PEDERSON: (Silas) While we were first dating, Micah kind of told me at one point that Silas I want to adopt kids with special needs, you can either get in with that or get out. And so that was something that early on when we were dating, she told me and at that time, I told her I don't know, I can't honestly say that I am. But I think that maybe that's something that God is going to move my heart towards and can move my heart towards.

About a month into married life, they started the process to become foster parents. At first, they planned to foster children with disabilities. Micah has a degree in special education and lots of experience working with kids who have special needs.

PEDERSON: (Micah) When we first started fostering, we didn't totally understand the need for medical foster homes even. We had, from the beginning, wanted to be specialized in taking children with disabilities. But in our first year and a half of fostering, we had a really special little girl who was pretty much fighting for her life, a good portion of the time that she was with us. And it was through that, that we kind of saw a lot of the holes in the medical system and learned of all the kids that have no advocate. And just the the huge amount of kids that are in foster care due to medical neglect. Or ultimately, a lot of it is just their families not having resources or exposure that they need. So at that point, we really kind of honed in on specifically medical foster care, and yeah, became a specialized home to pretty much only take kids with medical diagnoses.

Many of their foster children have been short-term placements. Close to 60 children have lived at least temporarily under the Pedersons’ roof since they started fostering seven years ago. Silas and Micah learned that some children who have significant medical needs wait and wait and wait—often in the hospital—for a foster family to be available. Foster families are often scared away by the child’s medical needs. Silas and Micah have sometimes provided short-term care: They brought the child home, set them up with local specialists, and figured out the child’s daily care routine. Then they helped train a family to take care of that specific child.

That helps give the child’s new foster family confidence that they can meet the child’s specific needs. It’s hard, for sure, but possible.

Foster and adoptive parents who don’t have a local family like the Pedersons to guide them often turn to social media for help. Videos posted by other families who have adopted children with special needs are especially helpful for parents adopting internationally.

Kristen Hamilton is the director of strategic initiatives and communication at the National Council for Adoption.

HAMILTON: I think certainly one of the benefits of the rise of digital storytelling and online networks is that we get a better glimpse into the lives of people different than ourselves. And so what may have previously been sort of a caricature of international adoption, for example, as just bringing home a healthy baby girl from another country, that began to expand as people began to tell their stories, whether it was through a blog through social media, through even YouTube videos, people began to get a better picture of what it was like to adopt a child with a special need.

According to a survey done by the National Council for Adoption, more than half of all inter-country adoptions since 2014 involved children with special needs.

It’s a broad category. In some countries, sibling groups or older children are considered “special needs” because it’s harder to find families who will adopt them. But even children with medical or developmental disabilities have a wide range of issues.

HAMILTON: They really run the gamut, everything from children with a neuroskeletal or neuromuscular degenerative diseases, such as perhaps cerebral palsy, spina bifida. In the international world, we see a lot of children with cardiac conditions, maybe different blood disorders. Limb differences are very common. There are children with craniofacial differences, hearing loss, vision loss, vision impairment. There's a whole host of different specific medical needs. And then there are some who may have some that are a syndrome, which would be a combination of different types of needs.

Parents willing to adopt children with special needs often need additional support as they prepare to bring a new child home. They need to know what to expect medically. What extra doctors or specialists will they need to schedule appointments with once the child is home? Will they need any adaptive equipment?

Julie Bledsoe is a pediatrician and the medical director at the Center for Adoption Medicine at the University of Washington Pediatric Care Center. She and her colleagues help adopting families prepare for their child’s special needs.

BLEDSOE: The process for international adoption is you put your paperwork in to a specific country through an agency, and then you are matched with a child and given documentation about that child. And at that time, you do have an opportunity to look at the medical record, and say, gosh, is this I mean, there's some families and it was that way with us where we got the referral, and it was like, this is our kid, right. But especially as we've moved towards more special needs adoption, and complicated, special needs, many families are thinking, you know, I want to know what to be prepared for, right?

During pre-adoption reviews, a doctor looks over this medical information. The center has done over 10,000 of these assessments. Bledsoe looks at medical history—if it’s available—and prepares parents for what other needs might come with a child’s diagnosis.

BLEDSOE: If you give birth to a child with special needs, everybody steps up to it right? And if you adopt a child and they end up having special needs, you know, you always you know, go to the mat with that special need. It’s a different thing to choose some of the special needs.

For families adopting from another country, the center also provides counsel during the family’s travel to meet their child or finalize the adoption. Sometimes the child has more medical needs than the paperwork indicates.

The center also provides post-adoption evaluations. And for the roughly 90 percent of families who aren’t local, it helps find specialists and trauma-informed pediatricians in their area.

In 1996, Bledsoe and her husband—who is also a doctor—adopted a child from South Korea who had a cleft lip and palate. He was about 4 months old. Their adoption agency sometimes called the Bledsoes with questions about the medical conditions of other kids they were trying to place. That’s when the Bledsoes realized few pediatricians worked in this niche area of international adoption.

Since then, the number of international adoptions has plummeted. Russian President Vladimir Putin shut down his country’s international program in 2013. Over the last decade, several countries closed adoption programs due to ethical concerns.

BLEDSOE: The numbers of international adoption that our clinic sees have dwindled. They're not completely gone. You know, we heard that Brazil just opened. We're sort of waiting to see what's happening with Haiti with their instability. China has been a little slow because of their, you know, COVID policy. But we are seeing more kids being adopted from Taiwan, from Colombia, and from Hong Kong. So the countries seem to morph a little bit with a few, you know, that are really steady. But as you can imagine, as families have less options for international adoption, more families are turning to adoption through the foster care system.

The center now also provides pre-adoption consultations for families adopting through foster care or private domestic placements.

For both international and domestic adoptions, Bledsoe and her colleague often work with families preparing to adopt children who were prenatally exposed to drugs or alcohol. Often, these children may be more likely to struggle with learning disabilities, mental health needs, or addiction when they’re older.

BLEDSOE: I think becoming a parent, either by birth or adoption, is inherently risky. And sometimes you think you know what you're getting into, and then you know, you don't. And I mentioned my son was born with a cleft lip and palate. That has been a non-issue for him. But when he was 3, he was diagnosed with Tourette syndrome, which has been so much more challenging for him. And so it, it wasn't the special need we signed up for, but you just have to as a parent, always be flexible as to what you may be challenged with. You know, you can't pretend that love is going to be enough. Always love is really important. And nurturing is so important, but sometimes these are kids that will need us to be vigilant about what other kinds of supports might crop up down the road.

YouTube VIDEO: [Father] “You know, every time I told somebody the baby had Down syndrome, everybody was like, ‘I’m sorry.’ I was just like, ‘I’m not sorry – have you ever met a child with Down syndrome?’ We want to show the world that these babies – they matter. They’re worth fighting for. They’re a gift.”

Today, adoption stories and lists of waiting children commonly feature children with Down syndrome. But 50 years ago, they weren’t usually considered for adoption.

In 1974, David and Robin Steele visited a group home for children with disabilities. They were just tagging along with a family member while she visited a young boy she was in the process of adopting.

STEELE: Dan was about 9 years old at the time. And he very much wanted us to meet Martha.

Martha was 3 years old. Her mother had decided to place her for adoption before she was born. But when Martha was a few months old, she was diagnosed with Down syndrome. She lived at the maternity home where she was born until she turned 2.

After that, the adoption agency decided Martha would likely spend her life in a residential care facility. But then Dan intervened.

STEELE: And so he brought her down to us, it was getting late in the evening. He went upstairs, picked her up out of her bed, and brought her down and dropped her in our laps. And he also dropped her into our hearts, but and because it was pretty much from that moment, just meeting her as this little girl who was 3 years old at the time, and falling in love with her.

Adopting Martha changed the Steele family trajectory. David and Robin eventually had 11 children, one who was born to them and 10 of whom they adopted. Four of their children have Down syndrome. The Steeles began helping other parents who wanted to adopt meet children with Down syndrome. And as more families began receiving prenatal diagnoses, they wanted to help equip parents to keep their children.

The Steeles began advocating for adoption awareness as part of their work with a local Down syndrome group in Cincinnati. Their work eventually became the National Down Syndrome Adoption Network.

THOMPSON: I just want to make sure that the need only decreases because more families are choosing to parent their children, as opposed to making an adoption plan. But I'm certain that there will always be a family there to adopt a child with Down syndrome.

The group has also helped find families for children who have other special needs. Steele says they were always happy to help any child.

Robin eventually retired from leading the adoption network. She handed the reins to Stephanie Thompson. She also has a son with Down syndrome.

THOMPSON: About 90 percent of our calls, when we get calls from new parents, they're in the prenatal stages. So they have received a prenatal diagnosis of Down syndrome. And they're deep in grief. Just getting that and how they find out about us is they actually just googled Down syndrome adoption and we pop up.

Thompson counsels parents through that grief. When they’re ready—days or even weeks later—she gives them information about Down syndrome and their child’s possible future. She connects them to local Down syndrome support groups. She says at that point, about half of the families choose to raise their child. Most of the rest choose adoption.

Thompson says that, for years, numbers have stayed almost exactly the same. About 40 families stand ready each year to adopt a child who has Down syndrome but only about 25 children are available for adoption.

She says that most years, one or two expectant parents who contact the network choose abortion. At least, that’s how many families usually tell her about it. It’s likely that others who choose abortion don’t tell Thompson or the network.

But last year, after the Supreme Court released the Dobbs decision overturning Roe v. Wade, six expectant parents told Thompson they chose to abort instead of raising their child or making an adoption plan.

THOMPSON: What is the feeling now was ‘I don't know what my state is going to do,’ or ‘I don't know what the state next to me is going to do.’ And they were so panicked about not sure what the states were going to do. They didn't feel like they had time to talk with me. So where I used to talk to somebody, you know, we'd have 3, 4, 5, 6 conversations, I only had one conversation with families because of that.

Thompson is waiting to see if numbers will return to normal this year.

Most adoptions the network helps facilitate are for infants. But not all of them.

THOMPSON: We've had any age range from toddler all the way up into the teens. And those are private adoptions where a family, you know, directly reaches out to me and says, you know, we've tried for years. We can't do this anymore. And we would like to make an adoption plan for our child. And then that, also that 10 percent also includes children in foster care.

In 2019, Chris and Cady Driver completed the paperwork to adopt a little girl from China who has Down syndrome. The couple already had three older biological children and a son with Down syndrome they adopted from China a few years earlier.

DRIVER: We were supposed to travel, the beginning of 2020. And the whole world shut down. And we had already done all of our adoption, paperwork, processed everything. We were literally waiting for travel approval, and China never reopened.

The Drivers wrote letters, talked to government officials, called the State Department. For over a year they waited.

DRIVER: I said to my husband, what if our child is here? Like how long are we going to wait for China to open? We you know, we're not getting any younger? And what if we just kind of put feelers out domestically and see if the Lord has us go in a different direction.

Cady called Stephanie Thompson at the National Down Syndrome Adoption Network. Thompson told the Drivers about a little girl named Ella.

DRIVER: Ella's story is a little different in that her family is ethnically Chinese, and they are going to be traveling back to China to live there because their family’s there. And they felt like she would not be accepted there. And so they made the difficult decision to put her up for adoption. And she was 3 when we got her.

Driver says she knows that God brought their two adopted children into their family. But that doesn’t mean it’s always been easy. The family has faced many hard days throughout the adoption process and after their children came home. She encourages families considering adoption to prepare for both hard and beautiful days. And she wants people to see that children with special needs can defy others’ expectations.

DRIVER: Ella can work a room like nobody's business. They understand loss, they're compassionate, they are funny, they're quirky, they are very smart. They are, I mean, some things they learn are incredibly quick. I mean, Lian, for whatever reason, can somehow reset the password on our home devices, I'm not really sure how he does that.

While some families prepare for a lifetime of dealing with physical and mental challenges, others know they’ll have much less time with the children they welcome into their homes.

SALCHERT: And we prayed and we sang, I'll go where you want me to go, dear Lord, and that, for the most part includes trips to Children's Hospital. And that's, that's been our mission field. Because those are the people that we come in contact with.

Cori Salchert and her husband Mark had eight biological children when Cori started working as a bereavement specialist at a hospital. She helped families who lost children in car accidents or due to medical conditions.

SALCHERT: It came up that what if this baby has a life limiting prognosis? Or what if you knew they're not even going to live through birth? Or they're born and we don't know, have a terminal prognosis? You knew? It's all well and good for you to say that you're pro-life. But what about, you know, families that can't walk through that? And I said, we'll take them.

In 2012 the Salcherts got the call that a baby girl needed somewhere to go. The infant was born with most of her brain missing.

SALCHERT: I got the call on August 20, that we have this baby in there. ‘What do you think? We don't know for sure how long she's gonna live—it could be up to two years. But she may not even live long enough to be able to get home from the hospital. Do you want her?’ Unequivocally, yes.

The baby girl was relinquished through safe haven laws. She didn’t have a name on her birth certificate. The Salcherts called her Emmalynn, combining the name the nurses gave her—Emma—with a relative’s name—Lynn. Salchert explained that all of their kids have family names.

After a few weeks of caring for Emmalynn, Salchert took her to meet with a group of women at church. The ladies oohed and aahed over the baby, and little Emmalynn responded to their touch. But that night when they got home, the baby’s condition took a turn for the worse. Emmalynn was dying.

SALCHERT: And I just thought, so what can I do? So, drawing on my nursing practice and the whole kangaroo care that we did, if a baby was too cool, then we would have snuggle them naked next to their chest or mom. And so I took all her clothes off except for her diaper. And I took mine off. And then I have a big green fuzzy bathrobe and I just wrapped her up as close as possible to my chest and it was there that she died. And what a beautiful thing to be able to…

Emmalynn was going to die no matter what. But for the brief time she spent on earth, she was loved. Cori says Emmalynn was held almost all the time.

SALCHERT: She didn't have to have somebody, but we were gifted with her life for that 50 days. And when she took off and met Jesus, I have confidence that she said they did what they needed to do. And we took good care of her and left everything out on the field. No holding back. We loved well and that so there were no regrets on that end.

Emmalynn was the first of many children to find their way to the Salcherts’ home. Soon they took in a baby who was exposed to drugs before his birth. He lived with them for several months while they helped him through withdrawals. Then extended members of his birth family adopted him. Cori knew this was a success story, and they’ve been able to keep in touch with his adoptive family. But she still grieved his loss.

SALCHERT: I know that he’s in a really good situation—this is wonderful, but I am super sad. And we were with the whole gang in the van out on a hiking trip in October. He went to his adoptive placement at the end of September, on my birthday. And in October, we were hiking and Mark said, “I don't know, I think we we should get another baby.” And I said, “No, you know, I don't know, that's such a good idea. I know, we're all kind of sad that, that he's not with us anymore.” And Mary Elizabeth piped up and said, “Yeah, but what if some kid needs us, Mom, and you're just sitting over here with a broken heart?”

Cori called their social worker.

Not long after that, they took in Charlie, a 4-month-old with severe brain damage. Doctors didn’t expect him to live long, but Charlie is now 9 years old.

The Salcherts also fostered a teenager with a degenerative disease. They were able to adopt him in September 2018. He died two-and-a-half weeks later, at 15 years old.

In May 2019, Mark and Cori took in Nehemiah, a toddler with a heart transplant. A few months later came Kassidy, a newborn who wasn’t expected to live until Christmas.

Nehemiah died of acute lung failure in December 2021. But Charlie and Kassidy both continue to defy their diagnoses.

SALCHERT: I don't know how this is all going to play out, we're not asking that. We don't wake up every day going, okay is Charlie or Kassidy going to die today, even though they should not be living, you know, I mean, it's sort of defying that, in that they should not be doing as well as they are. So we are faithfully doing the next right thing and making as good a life for them as possible.

Back at the Pedersons’, Silas and Micah recount some of the challenges they’ve faced fostering and adopting children with special needs. For one thing, it’s hard to find a church where they feel like their whole family is welcomed and served. They don’t have as many close friends as they did during college. And they never have enough sleep.

PEDERSON: As an adoptive and foster dad I found myself struggling with just the desire and just innate feeling that I needed to protect my family and realizing and having to set aside that sometimes because being obedient to God and following what he's called us to do, doesn't always mean being safe. And sometimes things are out of our hands and it really sucks. So I will say that that for me as a dad has been hard. And I think that a lot of dads struggle with that. I think a lot of dads pull back from caution. And I found myself holding back a lot. I think that being a foster dad has been something that I've had to it's challenged me a lot, that has not been easy. But I've also learned a lot about who God is through this process.

As a teacher, Silas gets home from work mid-afternoon, so he’s more available to take kids to appointments. One of Micah’s college friends babysits a couple times a week. But often friends and even family members aren’t sure how to help.

Silas and Micah realize that it’s not always easy to know how to step in. Food allergies complicate what meals they can eat. And their children’s needs prevent most people from being able to babysit. And sometimes? Their children just aren’t up to having other people coming into the house.

PEDERSON (Silas): There are things that we didn't know, because we didn't know what to ask for. Because we had never been in the situation before. So we didn't know how to tell people how to help. And so as my family did their best, and as people tried to do things, oftentimes, it wasn't what we needed. But we didn't know how to say it. And they didn't know how to do anything different. So it's been a learning process. So it's been a process of learning how to ask better, and how to encourage people to just step in, even though they might not know exactly what to do.

For Micah, daily life is full of therapy, appointments, homeschooling, and cleaning up lots of messes. But there’s more to it, too.

PEDERSON: (Micah) I often tell people that I feel like just in my home during the day that I'm walking on holy ground in a way because God's presence is just so evident here. And I often just feel absolutely honored to be doing what I'm doing. I think all the time, you know that I'm the only, I'm the only mom that this kid has in the night cleaning up their vomit. Or I'm the only mom that this kid has walking through them with surgery, and it just feels like a sacred space. Because we are so dependent on God's faithfulness and His grace, there is no way to do what we do apart from it. And so it just helps him be so much more welcome here, I think and we're just so aware of his presence and just how he is so present in the kids that are in our home. There's just something, something about kiddos that don't communicate how other people do or kids who have fought battles that most adults haven't never will kids who have, you know, been at death's door and still have hope and joy. And it's just really contagious. So I don't feel like we can even be in the presence of our kids without being in the presence of God.

PEDERSON (child): Now can I hold Mariah? [Micah]: Yes. [Child] Come here, come here!

Next week, we’ll wrap up our season with a visit to Texas, where a small, rural church helped start a national foster care revolution.

MARTIN: Everybody kind of helped out and did what they needed to. If they saw a child in the wrong, they would try to straighten him out and help them. I think this is why it is so important for the church to lead the charge, and it is because the church can be there when the state can't be there.

Effective Compassion is produced by the creative team at WORLD Radio. I’m Lauren Dunn. Leigh Jones is our producer. Paul Butler is our executive producer. Technical assistance from Rich Rozel and Creative Genius Productions.

UNDERWRITER SPOT: Effective Compassion is made possible by listeners like you. Additional support comes from World Help, a Christian humanitarian organization serving the physical and spiritual needs of people in impoverished communities around the world. Help for today, hope for tomorrow. Right now, World Help has a window of opportunity to deliver food and Bibles to starving, persecuted Christians in North Korea, one of the most dangerous nations for Christians. A gift of $20 sends a Bible and a week's worth of food to a Christian living in this hostile country. More at worldhelp.net/podcast.

WORLD Radio transcripts are created on a rush deadline. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of WORLD Radio programming is the audio record.


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