October has always been my favorite month of the year. I love everything about the cooler temperatures, family time carving pumpkins and roasting marshmallows over a backyard fire. October is also Down syndrome awareness month, and as a Ds adoption advocate, this is one more reason for me to love October. Since adopting my daughter Winnie two yeas ago, I have become passionate about finding forever families for waiting children with Down syndrome.
For many new families considering adoption from China, Down syndrome may seem like a significant special need to consider. But thanks to social media, the truth about parenting a child with Ds has become much easier to spread.
For me, personal stories from passionate mamas and papas always help me feel best equipped to face a new parenting challenge. For those parents considering a child with Ds, I wanted to put together a personal, relatable and comprehensive guide to help you feel more prepared to add a child with Down syndrome to your family.
To create this fabulous resource, I have teamed up with four other wonderfully experienced Ds adoptive parents to answer the questions we advocates hear most.
Meet the Parents:
Jenifer Parris: Wife and mama to seven children. Jenifer has one biological daughter with Down syndrome and one adopted daughter with Ds. Jenifer and her husband Bryan are in process to bring home a boy who also has Down syndrome. Both of Jenifer’s girls with Ds are now three years old. Minlan came home in 2014 when she was barely two years old. Jenifer and her family live in Birmingham, AL.
Chris Phillips: My sweet husband. Father to our two biological boys and Winnie, our seven year old daughter with Ds adopted from China in 2013 at the age of five. Chris is an attorney and we live in Austin, TX.
Whitney Stephens: Wife and mom to three biological children and two adopted boys from China with Ds. Milo came home in 2014 when he was 16 months old, and Ewan came home just this past summer at the age of seven. Whitney lives with her family in Salt Lake City, Utah.
Kathryn Winterscheidt: Mom to five children with another child joining her family through adoption this month! Kathryn and her husband adopted their daughter Meghan with Ds from China in 2013. Meghan was three and a half at the time of adoption. Kathryn and her family live in Oklahoma.
Q: Can you tell me about your child/children with Down syndrome?
Kathryn: Meghan was adopted at three and a half from China. Several months prior to adoption, we learned that she was experiencing some health issues and her weight had plummeted to 13 pounds. Luckily, she was moved to a facility that was able to care for her before we traveled, and she was a much healthier weight at “Gotcha.” She was profoundly delayed however, and we’ve spent the past two years with multiple therapists for physical therapy, occupational therapy, speech therapy, and feeding therapy. She’s come a LONG way, and is a truly happy, thriving child.
Whitney: We adopted Milo in March of 2014. He was 16 months at the time and is now nearly three. He was pretty severely neglected for about nine months before we got him and has significant delays (even compared to others who are adopted with Down syndrome). He has Sensory Processing Disorder and lots of quirky little ticks and stims. He is beautiful and is the most easy-going child on the planet. He loves to gives kisses and has gone from having nearly no muscle tone (he couldn’t even sit when we got him at 16 months) to nearly walking. He is a happy, joyful little soul. His smiles, kisses, and hugs melt the heart of anyone who experiences them.
Ewan came home in July 2015. He is seven and a half and spent most of his life in an orphanage/foster home mix. He is smart, funny, loving, mischievous (in a very Curious George sort of way), and loves life like nobody I know. Everything he experiences is wondrous. If he hears music, his body will not let him sit still. He HAS to dance. He lives in the moment and teaches us all how to find joy in the small things.
Jenifer: MinLan is our amazing three year old who happens to have Down syndrome. She has been home since April 2014. We also have a biological daughter, also age three, named Neely who has Down syndrome. These two keep us on our toes. They are so much fun!
Chris: Winnie is 7 years old and has been with our family for 2 years. Winnie is vivacious, funny, loving, stubborn, energetic and beautiful. Winnie loves art projects, ballet dancing, swimming, soy sauce and Dora. She also loves school and her big brothers.
FACT: Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. Read more here.
Q: What led you to adopt a child with Down syndrome?
Jenifer: I always knew that adoption, specifically a child with Down syndrome, would be a part of our story. I grew up with a brother who has Cerebral Palsy, so being around others with special need was just part of growing up. I looked forward to being able to bring a family to a child with special needs.
Kathryn: We pursued a child with Down syndrome because my older brother was born with Down syndrome. I spent my entire childhood surrounded by people with Ds, and it was a condition I was very familiar with. We felt comfortable with our ability to meet the needs of a child with Down syndrome.
Whitney: We decided to adopt a child with Down syndrome the summer of 2012. We learned that Down syndrome is quite stigmatized in many countries and that parents all over the world were abandoning their children with Ds. We knew we would love to be the parent of a child with Down syndrome. My husband grew up with a boy in his neighborhood with Down syndrome, and he’s still one of our best friends. Life wouldn’t be the same without him, and we were totally comfortable parenting a child with this special need.
Chris: We had a nephew with Ds that passed away some years ago, but he was in many ways like Winnie. He was smart and funny and goofy and so loved. We knew in general the challenges and opportunities involved in having a child with Ds and were pleased when China began making those children available for adoption just a few years ago. At the same time, we weren’t just adopting any child with Ds, we were adopting Winnie, with whom we fell in love from her pictures and videos.
FACT: Down syndrome occurs in people of all races and economic levels. Read more here.
Q: How did you prepare yourself and your family to adopt a child with Down syndrome?
Kathryn: Prior to adoption we made some connections with our local Down syndrome association and also lined up several specialists we knew we would want to see after our daughter’s homecoming (cardiology and ortho for instance). Our home study caseworker also had us line up a series of resources, online and in print, to draw from that related to Down syndrome. We were already familiar with most of the common health issues affiliated with Ds.
Whitney: We prepared by reading books (Babies with Down Syndrome was my favorite), spending time with kids with Down syndrome, talking to parents of kids with Ds, and picking the brains of people who’d adopted kids with Ds. We also did a lot of general adoption training, because abandonment and grief affect kids with Down syndrome as well.
Chris: Because of our prior family experience, less preparation was necessary than it might be for other families. But I think my wife read every book that was ever published about Down syndrome.
Jenifer: I felt like we were ready since we already had a child with Ds.
FACT: If you are considering bringing a child with Ds into your family, and you haven’t really spent any time with the Down syndrome community, you can find several ways to volunteer in your hometown. Contact your local Down Syndrome Society, Gigi’s Playhouse or find a Local Buddy Walk for ways to help. It is best to have a clear and personal understanding of everything that Down syndrome can be before committing to an adoption. There are several helpful facebook groups as well. Contact Stephanie Gilbert to join a facebook group for current and prospective parents of adopted children with Ds.
Q: How was your child’s transition into your family?
Jenifer: Honestly, as good as I could have imagined. There have been hard days for sure, be we expected that. Our other children have embraced MinLan like she has always been with us and she has a special bond with each of them.
Whitney: Ewan finds joy in life as a way of being, and he took to us very quickly. There were moments of difficulty in China, but most of it had to do with communication issues. He loves the adventure that is life and embraces every new opportunity. He trusts us and loves us and we adore the socks off of him!
Chris: It was very smooth. Winnie was guarded in China, but not hard to be with, just quieter and she had some moments of profound sadness at night. She did begin to bond with both of us in China, but after we came home, she really opened up. Watching her personality emerge has been like peeling an onion. She has always been a joy, but looking back, we can see how much she has blossomed.
Kathryn: Meghan transitioned into our family fairly well, all things considered. She was so very delayed that it was essentially like bringing a baby into the home, despite the fact that she was three and a half years old. She grieved HARD in China, with several bouts of crying and screaming for hours on end. Those moments all but disappeared once we were home with her.
FACT: According to Down Syndrome International, There is evidence to suggest that many people with Down syndrome have a delayed response to grief and that their grief may be expressed in alternative ways. Limited communication skills may also limit their ability to express that they are grieving. Children with Ds may respond to the transition of adoption by trying to control their environment in any way that they can. This behavior is also seen in adopted children who are cognitively typical. With love, patience and time, most children with Down syndrome adjust very well to their new families.
Q: How did you communicate with your child during his or her transition?
Whitney: Ewan is/was fluent in Mandarin, and we knew from the beginning that communication would be one of our biggest challenges. We purchased the book “The New Crunch-Time Guide to Parenting Language for Chinese Adoption” and that was very helpful. We also had translation apps and did a lot of charades (he did as well.) He is VERY expressive and lets his desires be known. We had little issue knowing what he wanted at any time. Haha! He also is very observant and figured out, based on our body language, what we were trying to tell him. Once we were home, we started watching Signing Time together. We have watched Singing Time with all of our kids, but this took my love of the series to a whole new level! Not only was it teaching him sign language, it was also teaching him English! We finished the entire first series, which is 9 or 10 DVD’s, and he knows every single sign. We recently began the second series and his language is really exploding. He also signs a lot of the words he doesn’t remember. It’s perfect!
Jenifer: Minlan was only two when we brought her home. And she really was like a baby in many aspects. Because of her age, there was not a lot of language on her part, so no trying to overcome a language barrier really. We spoke to her as we would a baby… in soft tones, and always tried to reassure her and be gentle with our speech.
Kathryn: Meghan was completely non-verbal at adoption. Her language skills were so lacking that she didn’t realize that she even had a name; there was absolutely no response to the human voice. It was hard! There was absolutely no way to communicate with her in any way – and honestly the only way she knew to recognize affection was through food. So our primary means of ‘communicating’ with her, was by constantly keeping food around her so she would feel secure and safe.
Chris: Winnie has always been a good communicator. We almost never had a really hard time understanding what she wanted, just through gestures and “non-word” verbal communication. We had also sent along a package of sign language flash cards (in English and Mandarin) to her foster family, and she clearly had spent some time working with them. So she knew some basic signs, and she still signs a lot almost 2 years later. Her Mandarin skills were excellent, and she is now speaking in 4 and 5 word sentences in English. Her pronunciation skills are weak, but she is working hard to improve!
FACT: Speech and language present many challenges for children with Down syndrome but there is information that can help infants and toddlers begin learning to communicate, and help young children progress in speech and language. Although most children with Down syndrome learn to speak and will use speech as their primary means of communication, they will understand language and have the desire to communicate well before they are able to speak. Total communication, using sign language, pictures, and/or electronic synthesized speech can serve as a transitional communication system. Read more here.
Q: How has adding a child with Down syndrome affected your family dynamic? How have your typical children reacted to him or her?
Whitney: Adding a child with Ds has affected our family dynamic by making us better. We all have much more compassion, are comfortable around people with special needs, have learned to look outside ourselves more, and love big. Our typically developing children are much more helpful (because the need for their assistance is much greater than it once was) and truly blossom in serving their brothers with Ds. My husband and I have always been a good team, but this has pushed and stretched us and made us better as the needs of our children have expanded. Adopting our two kids with Down syndrome has been one of the best life-changing experiences we’ve ever had. Our biological children love them with every ounce of their being. In fact, the adoption of Ewan was our then seven-year-old son’s idea. He saw Ewan’s picture and begged us to adopt him! His words when I told him no initially were, “But he needs a family, and we’re a family, right?” They are siblings and of course have disagreements, things that annoy each other, and struggles, but the love they have for each other far outweighs the annoyances.
Jenifer: I continue to be amazed! Adopting a child with special needs has only softened the hearts of our typical children. They are kinder, gentler and more compassionate. Adopting in general has made them more aware that not every child has a family. It is changing who they are fundamentally. We like the fact that our children are starting to see the BIG picture in this world. It is not all about THEM. God desires for us to step outside ourselves, to help others, to not be so selfish. I pray that they grow up to be givers, to put others before themselves and to actively look for ways to help others.
FACT: While having a sibling with Down syndrome may present unique challenges, it also provides many opportunities for children’s positive growth and character development. Studies have shown that children who have a brother or sister with Down syndrome can benefit in many ways. For example, these children often exhibit a level of maturity above that of their peers and tend to have more highly-developed communication and social skills. The experience and knowledge gained by having a sibling with Down syndrome also seems to make children more accepting and appreciative of differences. They tend to be more aware of the difficulties others might be going through, and often surprise parents and others with their wisdom, insight and empathy. Read more here.
Q: Does your child have any health concerns in addition to Ds? Does he or she have any health conditions that were not included in the file?
Chris: Winnie had hypothyroidism and she will take medication for that her entire life, but otherwise it doesn’t really interfere with her life. She had some fairly serious dental issues that we have had to work through. And she, like most people with Ds, needed glasses. None of those issues were documented in her file, but they don’t threaten her health.
Kathryn: Meghan’s file from China mentioned a possible minor heart defect, and her ‘emergency update’ discussed an intestinal abnormality. However, both were ruled out in the United States, and we no longer see a cardiologist or GI doctor. However, she is missing a vertebrae in her neck which was not diagnosed in China. She has too much range of motion looking up and down but right now doctors are comfortable monitoring her and do not recommend any surgeries or treatment. She also has difficulty with grasping things, and the doctor and therapist believe it may be related to vertebrae and spinal cord issues — an MRI will clear that up for us later this year.
Jenifer: Other than Down syndrome, MinLan has no other medical needs. Her file was spot on.
Whitney: Both Milo and Ewan have health concerns, none of which were included in their files. Milo’s biggest struggle is that he has a complex airway that a team of doctors is still figuring out. He came to us with a repaired ASD, but his heart looks great and only requires annual check-ups. He also was diagnosed with Hep B once we got home. That was a total surprise to us. By some miracle, his body completely eradicated the infection and it is no longer a concern.
Ewan’s file said he had no health concerns aside from Down syndrome, but I made a slew of appointments anyway. The first doctor we saw was the cardiologist, and I was expecting to be told there was no issue and to come back in a few years for a check up. This was not the case. He has a sizeable Perimembranous Ventricular Septal Defect. We were initially told that he is probably inoperable because of his age and inevitable permanent damage, but in another miracle we learned he would qualify for surgery. As I type this, we are in the CICU recovering from open heart surgery.
FACT: People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives. Read more here.
Q: Does your child have any characteristics of autism or Institutional Autism? If so, How does that impact your family?
Kathryn: In the beginning, Meghan had SO many characteristics of institutional autism. She would not (or could not) make eye contact, flapped her arms, chewed on herself until she bled, shook her head back and forth, made repetitive sounds…lots of stimming and self-harm, even. It was hard! We worked to find substitute behaviors for some of her issues, and really just being outside of the institutional setting has changed her profoundly for the better. There are still some signs there that our neuropsychologist says fall on the autism spectrum, but wants to give Meghan a full three years home before diagnosing her with anything.
Chris: Since both of our biological boys are on the autism spectrum, we are thankful that Winnie does not have any characteristics of autism.
Whitney: Milo definitely has characteristics of autism/institutional autism. He avoids eye contact, has SPD, and has many stims. This really has no effect on our family. It is just how he is, and we adore him just how he is. He’s full of love and life and is a delightful little human whom we are honored to parent.
Ewan does not display any characteristics of autism.
FACT: Estimating the prevalence or occurrence of ASD among children and adults with Down syndrome is difficult. This is partly due to disagreement about diagnostic criteria and incomplete documentation of cases over the years. Currently, estimates vary between 1 and 10%. Most believe that 5-7% is a more accurate estimate. This is substantially higher than is seen in the general population and less than other groups of children with intellectual disability (20%). Apparently, the occurrence of trisomy 21 lowers the threshold for the emergence of ASD in some children. This may be due to other genetic or other biological influences on brain development. Read more here.
Q: Does your child go to school? If so, what does his or her IEP look like?
Whitney: Neither of my guys with Ds go to school yet. Milo has his first IEP meeting in a few weeks and will be attending preschool starting in November. Ewan should technically be in second grade, but we are going to push for preschool or kindergarten when the time is right for him to go to school. For now, we are enjoying educating him in how to be in a family and learning to rely on just one mom and dad as opposed to asking every stranger he sees for help. Our plan is that he will start school in the new year.
Chris: Winnie started kindergarten almost a year after coming to the U.S. She has some specific accommodations in her IEP to deal with her delayed language skills, but otherwise she is mainstreamed for a majority of the day as a first grader. She receives an hour of Speech therapy in school each week, and has an Augmentative Communication Device that was provided to her by the school. She has a full time aide, and rides the special needs bus with an aide. Her school has been tremendously cooperative, and her peers love seeing her succeed.
Jenifer: Minlan receives services through our local school system but she does not attend classes there as we homeschool. She does have an IEP in place and our main goals right now are focused on communication and safety.
Kathryn: Meghan went to school for PreK. This year, however, we have opted to homeschool her. Our hope is to move before next Fall and enroll her in Kindergarten in a different district. Our IEP experience was a real struggle, and inclusion was not a priority. So, we are doing lots of therapies and work here at home. She’s been making lots of good progress.
FACT: Most people with Down syndrome have cognitive delays that are mild to moderate. Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome. Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in postsecondary academic and college experiences and, in some cases, receive college degrees. Read more here.
Q: Does your child receive any therapy? Does your insurance cover these therapies?
Jenifer: MinLan receives Speech, OT and PT. We paid for private therapy completely out of our pocket when MinLan came home and before she transitioned into the school system.
Kathryn: Meghan has received many, many therapies and currently has a physical therapist come to our home, goes to visit a speech therapist, and works on Gemiini here at home. We are taking a three-month break from OT but will be beginning that again in January. She has done feeding therapy, as she had no experience with solid food and could not chew. She’s made good progress and we currently are not doing feeding therapy. Her neuropsych recommends ABA therapy as well. Insurance is pretty miserable when it comes to therapy. Our policy covers a TOTAL 25 therapy sessions, across the board. That means speech, OT, and PT we have twenty-five combined today. We maxed out our coverage in a couple months, and pay out of pocket.
FACT: Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives. Read more here.
Q: One of the biggest concerns for prospective parents is Long Term Care. How are you planning for long term care? What do you expect his/her future to look like?
Kathryn: We are prepared to have Meghan live with us all her/our lives, but would love for her to have the chance to live semi-independently if she wants to. She has many older siblings – and while I realize this may not be an option some would consider – we know that they will work together to look out for her well-being if and when something happens to my husband and myself. As she approaches adulthood, we will explore some of the special needs communities around here and see if any would be a good fit for us.
Chris: We can’t be sure what the future holds. I expect she will always live near us, but, perhaps optimistically, I think she will live on her own (perhaps with a group, but not with us) as an adult. We are certainly prepared to live with her for as long as we are able, but she has an independent spirit, she is physically healthy and she is bright. I think she will hold a job and be independent as an adult.
Whitney: When we adopted Milo, we anticipated that he would be living at home for the rest of his life and we are excited to share a lifetime with him. Ewan may be able to live slightly more independently, but you never know how life’s going to go. We are open to several possibilities, including group homes where they could have more autonomy, a basement apartment in our home where they could be more independent but still close if they need us, or just staying in our home.
FACT: Businesses are seeking adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry to name a few. Read more here.
Q: To conclude, what one piece of advice would you give to families considering Down syndrome adoption?
Whitney: My biggest piece of advice for those considering Ds adoption is to get involved in your local Down syndrome community. Most cities have organizations to support and celebrate people and families with Down syndrome and it’s easy to join and get involved. It’s important to really observe how people with Down syndrome are to see if it’s something you can envision in your life. It’s easy to look at smiling pictures of our kiddos and forget that they do have a disability. I often say that Ewan is 7, but is physically and cognitively more like a 3 or 4 year old. That does not mean that he acts like a typically developing 4 year old, though. That means he acts like a 7 year old with Down syndrome. His brain works differently than typical kids. He has differences that are common among individuals with Down syndrome, and it’s important to recognize that your child isn’t simply JUST delayed.
Jenifer: Do it. Just do it. If you feel that tug to adopt a child with Ds, then God has mighty things for you and you will be blessed beyond what you can even imagine. You will never know such joy or such unconditional love. I can’t even put it into words. If you feel like your spouse is hesitant, pray. Pray for them to have a love for these children like you do. Pray that God burdens their heart for these children with Down syndrome. Afraid of what tomorrow holds? None of us are promised tomorrow. Why worry about 20 years down the road when a child is longing for a family TODAY.
Kathryn: Don’t be scared. Don’t be scared to consider a child with Down syndrome, don’t be scared of the child you meet at adoption. Between trauma and institutionalized care and developmental delays – your adoption day is NOTHING like what your future with that child may be. Don’t be scared.
Chris: Make sure you have videos and good information on the child, such that you understand your child’s mental, emotional and physical condition as much as possible. Be prepared for unexpected things, but also be prepared to embrace the love these kids have to offer.
FACT: When I asked our participants if they had any regrets about adoption their children with Ds, every single person unanimously responded NO!
Our children with Down syndrome are just like all other children in so many ways. They love to play and learn, they have dreams and ambitions, and they experience a full range of emotions too. They long to be loved and give love, and they deserve the gift of being in a family.
Adopting a child with Down syndrome has been one of the very best decisions we have ever made as parents. While parenting Winnie has not come without its challenges, we have gained so much more joy, happiness and love than we could have ever imagined. Winnie touches the lives of everyone she meets, and she has opened doors for so many other children like her to be adopted too.
If you are considering adopting a child with Ds, or you know someone who is, I hope these answers have given you some peace and help you to make an adoption plan. I hope we have given you the courage to say YES to a child with something extra to share.
– guest post by Stephanie who writes about their current journey to adopt their second daughter with Down syndrome here.