Jennifer Willis
Jennifer Willis is a 5th generation Oregonian who is currently living in Eugene with her husband, Brandon, and their two daughters, Dasha and Emily, who both have Down syndrome. Jennifer and Brandon adopted the girls from Russia where they were living in an orphanage. When she is not busy being a mom, Jennifer teaches elementary school art and music while also blogging about her life and family.
Jaira Chaffee: Is there a difference between adopting kids with DS and having biological ones?
I think there probably is a difference. One of the reasons, at least in our case, was our girls were older. If we had adopted them as newborns it might not look quite as different, but our girls came to us as older children; Emily when she was not quite two and Dasha when she was 6 ½. So really over this past year and a half we have learned a lot about the girls. Really for our girls more of their challenges and their issues are a result of the institutionalism rather than their Down syndrome. They are extremely smart little girls. Our girls are extra independent because they had to learn to be extra independent as babies. They had to learn how to fend for themselves. We have had to teach them how to depend on us and how to live as daughters; they never were daughters before. That is the biggest difference between adopting a child with Down syndrome versus having one.
J: Do you ever get a break?
Sometimes, though not as much as we probably need. There are services in the community that help. We are actually going to start taking advantage of the ARC respite care program. We can take the girls to play and have way more fun than they would with us, probably, on Saturdays for a few hours. We have had a few folks who have offered to babysit. We need more babysitters.
J: Where do you see your family in 20 years?
My dream is that they live independently or semi-independently. Obviously we may need to help with things like money management along the way, but our hopes and our goals and our dreams for our children are that we are able to train them, starting now. We want them to be responsible, to be confident and to have the life skills they need to be independent. And so whatever that looks like, whether together or in their own places, who knows? I think that overall our dream for the rest of our lives is they will grow up, find a career in life that makes them happy, find love if that is what they are meant to do and be successful.
Nathan Swanson
Nathan Swanson is a lifeguard at the Willamalane Pool in Eugene, and during the summers he works as a Camp Counselor at a summer camp for children, YMCA Camp Seymour. Both of his jobs have required him to work with young kids with learning disabilities such as Down syndrome and Autism.
Jaira Chaffee: What were the differences between working with young children with learning disabilities and children with normal development?
I’ve noticed that children with learning disabilities need more patience and care because everything moves at a different pace for them. During camp activities it is important to be more attentive and kind of be there every step of the way. You almost develop a closer bond with these children because you are spending more time with them usually than the other kids.
J- How were the campers with Down syndrome treated at the camp you worked at?
One of the things I love about camp is that we stress inclusion, especially children with Down syndrome and other special needs. It shows the maturity in other kids when they are playing with them because they almost act as counselors themselves and want to help their fellow camper out and make them feel included in the group.
J- Have you noticed any techniques that seem to help children with Down syndrome focus and stay engaged in activities?
I’ve noticed that it helps to not only tell them how to do something but also show them how to do it so that they have a visual to work from. You have to remember to move at a different pace because it not only helps them understand it when you work slower, but also makes it more fun for them. It would be easy for the other kids to make fun of kids with special needs but from my experience the other children seem to have more fun when there is a person with special needs in the cabin.
Becca Hope
Becca Hope is a mother of three. Her youngest son, River, is 2 ½ years old. River was diagnosed with Down syndrome pre-birth. Originally from Coos Bay, Becca now lives in Springfield with her newly wed husband and children. She currently works as an assistant in a special education classroom focused on developing life skills.
Christopher Keizur: When did you find out River had Down Syndrome?
I was 20 weeks pregnant. They found some abnormalities in his ultrasound. They found these things and sent us to the prenatal specialist. They asked if I want to wait or find out what was wrong. I said as a single mom at the time I need to know what I am facing. A week and a half two weeks later I got the call, they said I need you to sit down. I probably cried for a good day and then I said all right, here is where we learn. Here is where we figure it out.
C: Was that hard, to come to the decision to rally after finding out the news?
He was my sixth pregnancy, and I had a couple of miscarriages. So I just wanted him to be healthy, anything past that I thought I could deal with. I have a lot of family support. There were times, with all the appointments and stress, that it was tough. But my Mom went with me to almost all of my appointments; she was my biggest support. I come from a background of spiritual faith, so there was a lot of prayer as well. And my kids, my girls helped. We handle a lot of things through laughter. They pull me through.
C: How does having a child with Down syndrome make being a parent harder?
I was single for the first year and a half of his life. Everything is approached differently. With Down syndrome a lot of things that I took for granted with the other pregnancies, that babies were born healthy, wasn’t true. He was too weak to breast feed, he choked on all of the formula. It is just a learning curve, a take it a day at a time kind of thing. He goes through every baby stage that typical babies go through, but he does it slower. You have to think, ok is this a down syndrome issue or is this just a little boy issue.
C: What does his future look like?
I think the future looks great for him. We are working very hard on being independent. I think he can have a job, that he will have friends and have fun. He is a kick, just a great sense of humor. I think he will always be the one at the parties just dancing, having a good time.
Alven Hope
Alven Hope lives in Springfield with his wife Becca, her two daughters and her son River, who has Down syndrome. Though he isn’t River’s biological father, Hope has jumped head first into the rewarding challenge of raising a child with Down syndrome. Hope works at Childs Auto Repair Service in Springfield.
Christopher Keizur: What was your first impression of River?
That he was a fun and happy child. I knew right away that I was going to like him and like being around him. He is a great kid. Everyone has that same first impression of him, I don’t think there has been anyone who hasn’t fallen in love with him when they first met him.
C: I know River has been learning sign language, have you been learning along with him?
Yeah I have been learning all the new signs he has so I can help reinforce them and talk to him. He has been learning really quickly.
C: Can you talk about the support system for River and how important it is?
He has his sisters, me, his mom, his grandparents, my sister; everybody is really supportive. We all try to have the same type of routine for him. We have that structure there because we all are pretty much on the same page of what he needs to be doing. So I think we’ve got a pretty good support structure for him. I have high hopes that he will do very well in life.
C: Has there been a high point for you with him?
Probably right now with how quick he has been picking up stuff. His communication, for me that is probably the highest point right now.
Brandon Willis
Brandon Willis lives with his wife and adopted daughters, both who experience Down syndrome. The family is very active in the church and loves to help others. Brandon works for a large software company and his hobbies include martial arts, being outdoors and playing the drums.
Tyler Rogers: When you first started thinking about being a dad did you ever imagine this for yourself?
No, definitely not, because I had no experience with kids with special needs. It was never part of my mindset that would be me someday. I guess I never thought it wouldn’t be, but it just never crossed my mind. As we got married and as we started to talk about having a family, adoption was always something that we wanted. And as we started looking at kids with special needs we thought why not, why not us? These kids need families. Why couldn’t we do it?
T: Other families’ talk about the grieving period after learning their child has Down syndrome. Did you ever experience that?
We went into this process knowing we wanted kids with Down syndrome, so we didn’t grieve during the finding out process like a lot of families do. Those families, when they get the genetic test that their child has Down syndrome, they have to process ideas about what it is going to mean for their child’s future and what it is going to mean financially. Grief comes in for those families. We didn’t have that because we came into it knowing our kids had Down syndrome, we chose that. For us we still have some trepidation, some concern about what the future might hold. Like any parents we want our children to have all the opportunities in the world. We want them to grow up to be whoever they want to be. We understand their cognitive abilities may close some doors for them, but we are trying to not close those doors for them. So we don’t grieve as much as we hurt when we see them hurting.
T: Is there anything you would have done differently this past year?
We didn’t know what we didn’t know. That was the problem. I think we did the best we could. We went into it knowing we didn’t know everything. We weren’t quite prepared for the sleep deprivation, which is something no parent can be quite ready for. Just how much a lack of sleep impacts everything else. So that has been really tough. Being parents to kids who operate differently than what you are used to exposes every character flaw that you have. I had no idea I could get as angry as I do, or as impatient or as selfish. I had no idea until I had kids.
Kathy McGrew
Kathy McGrew works for Early Childhood CARES, a program in Lane County that provides early intervention and special education to infants, toddlers and preschool age children in Lane County. McGrew works with multiple families and children in the area, helping to educate them and teach them special skills.
Tyler Rogers: Since you work with so many young kids with Down Syndrome, what’s something you’d want to tell people?
One of the stereotypes is the stronger the facial features the lower functioning the child; and that’s not the case at all, it’s just how it’s manifested in each child or person’s body. While you may have a child with a really strong tongue thrust and really strong facial features they may function on almost a typical level with their peers. And then you may have a child who doesn’t look like they have Down syndrome at all, but they function on a lower level.
T: Are there any patterns you see?
Most kid’s with Down syndrome struggle with really low muscle tone so that plays a lot into their ability to walk, their ability to eat and swallow and drink. That’s why a lot of times you’ll see people with Down syndrome and their tongue sticks out.
T: Hmm, I didn’t know that was a common problem.
Yes definitely, I had a little guy in our classroom and he was three already. He couldn’t walk, he couldn’t eat anything that had more texture than something with a tiny chunk in it. His gag reflexes were off the chart, so he needed physical therapy, occupational therapy, he was making no words at all. I also have another little guy in my toddler class and he was four months old before they diagnosed him. He has basically no physical features, but his parents found out after he had to have heart surgery. The doctors tested him because that’s a really common side affect with kids who have Down Syndrome. It’s actually pretty remarkable how varied the affects are with Down Syndrome and every child who has it is unique in their own way, just like everyone else. We all learn and develop at our own pace.
Melanie Camat
Melanie Camat is a former student at the University of Oregon. She currently lives in Honolulu, Hawaii and attends Leeward Community College where she is studying human physiology. When she is not in school she works with kids age 12-14 at R.L. Stevenson Middle School in the special education department.
Andrea Baysa: What have you learned from working in the special education department?
It’s interesting watching them interact. They want that social interaction, but at the same time they’ll just keep to themselves. It’s interesting. I fee like we, the public school system, don’t do enough for the kids. I guess we don’t have the equipment and the resources that are needed to teach these kids, and we don’t have the teachers.
A: How important do you think it is for people to be educated about people with special needs
I think it’s very important. I think people tend to think that they have this bad life, but they’re happy! You can’t treat them like babies. They may not have the learning capacity like you and me, but they understand more than most people think.
A: What is the hardest part about working with these kids?
The patience. You know that they can learn this and you know what they’re capable of, but sometimes you push too hard. Then they get frustrated and you get frustrated. So I would say being patient with each other is probably the hardest part.
Fred Baysa
In 1997 Fred Baysa and his partner Terry Anspach began taking care Terry’s sister, until she passed away in 2004. She was 54 years old and had Down syndrome. Fred recalls this experience as a tough time in his life, but very rewarding in the end.
Andrea Baysa: What have you learned about yourself from interacting with people who have special needs?
I learned an extraordinary set of lessons from a friend who is a special education teacher at a public high school. With some of that information and background, I was able to make decisions that the blood relatives were not able to make, because they were held back by fears of not doing what’s best for their relative and they couldn’t agree on which approaches. Since Terry’s sister wasn’t educated in a classroom setting (no resources available in rural settings), I used my teaching background to teach her the alphabet and simple reading. I learned that I’m not as patient as I thought that I was. Dealing with a stubborn person will test anyone’s patience, but when that person is in your home and you are responsible for that person, it’s never easy. I learned that we can stimulate and nurture the creative energies in a special needs person and they will blossom as an artist.
A: What do you think is the toughest part about working with people who have special needs?
We should have put her in an assisted living center 18 months prior to her passing as her mental capabilities diminished, but family reluctance was the issue there. Bad thing is that the strongest resistance came from family that wasn’t caring for her 24/7. In my opinion, they were more concerned about the finances. I had to make most of the tough-love decisions or try to get the family to understand. I was bitter in those years about that responsibility being thrust upon me, but it worked out fine.
On being a caretaker, it would be having the resources to care for a loved one at home. Information on home safety would be crucial, too, since the home set-up has to be altered to make it safe for everyone.
A: What is the best part?
It would be seeing a special needs person experience the world–new foods and cuisines; new, faraway places; and amusement parks such as Disneyland where they can see the characters they watch on TV and DVDs come to life. Otherwise, they would just know the few rooms in a care home and the world from a television screen.