Down syndrome occurs in one of 691 births, or 6,000 births per year in the U.S., as a result of the presence of an extra chromosome 21 at conception. Although individuals with Down syndrome tend to experience some health problems throughout their lives, recent medical advances have increased their life expectancy. Moreover, parents of children with Down syndrome have access to therapeutic and educational supports through early intervention and the public school system. A recent study published in the American Journal of Medical Genetics demonstrates the positive impact of Down syndrome on families; it found that 79 percent of parents report that their outlook on life was more positive because of their child, 94 percent of siblings report feelings of pride about their sibling with Down syndrome, and 99 percent of people with Down syndrome feel happy with their lives.
Gerald Mahoney, Ph.D., who developed a research-based strategy called Responsive Teaching for improving cognition, behavior, and communication in children with special needs, says: “Parents are far more influential on their children’s development than teachers and therapists are. Early developmental learning for all children can occur in the context of any interaction or activity the child is participating in throughout their day. And parents, especially in the first five years, have much more opportunity to interact with their children than do teachers in classrooms or related service specialists.” In other words, our role as parents makes a big difference in our children’s development.
When our older daughter, Penny, was diagnosed with Down syndrome at birth, it felt daunting to consider the medical, social, educational, and behavioral challenges ahead. I had no idea how much support and encouragement we would receive from family, friends, and the larger community of other parents with kids with Down syndrome, as well as from dedicated and caring therapists, teachers, and medical professionals. Although we have many years to come, and many lessons to learn as we parent Penny and our other children, here are a few pieces of advice. Children with Down syndrome can bring a lot of happiness to a family. Living with the motto ‘She can do anything you can do,’ one dad of four describes how his youngest enriches their everyday life.
Learn the Facts First
There’s a lot of misinformation about Down syndrome, and for women who have received a prenatal diagnosis and for women who have just given birth and received a diagnosis for their child, accurate and up-to-date information is critical in making decisions and maintaining a realistic and positive attitude for the future. According to Stephanie Meredith, writer of Understanding a Down Syndrome Diagnosis, a booklet that offers current information for medical professionals to deliver a diagnosis, “Most of the misinformation that exists is simply outdated information before early intervention, inclusion, and progressive healthcare were the norm. Since society has begun investing in children with Down syndrome, life expectancy has doubled to about 60, and people with Down syndrome are increasingly completing high school, attending special college programs, and living independently.”
The National Down Syndrome Society provides checklists for doctors’ visits and other resources for medical intervention and support. But learning the facts about Down syndrome also involves understanding the social and emotional reality that most people with Down syndrome enjoy their lives, and that most families raising children with Down syndrome report positive benefits from their child’s presence. Siblings report greater compassion toward others, and parents report a lower divorce rate than the norm.
When understood from both a medical and social perspective, Down syndrome is no longer a negative diagnosis.
- Down Syndrome Pregnancy: Diagnosis Information
- Woodbine House: Books on Down Syndrome Topics
- Band of Angels: Hopeful Stories and Photographs
- National Down Syndrome Society: Healthcare Guidelines
Get in Touch With Other Parents
One of the advantages of a Down syndrome diagnosis, in contrast to rare or undiagnosed conditions and syndromes, is that it is easy to connect with other parents who are raising kids with Down syndrome. Two major national organizations — the National Down Syndrome Society (www.ndss.org) and the National Down Syndrome Congress (ndsccenter.org) — provide support to parents through information and conferences. Inspirational stories are also available in the online book My Great Story (www.ndss.org/stories). The NDSS advocates on behalf of people with Down syndrome in Congress in order to secure funding for research and social programs that will provide support in school, at home, and in the workplace.
Many local communities have support groups for families. You can find a local group through the affiliates page on the NDSS website or by contacting a social worker in your area. In general, the Internet offers support to parents of children with Down syndrome and with other disabilities. Search “Down syndrome” on Facebook to find groups and connect with others or search for reputable blogs and websites to read personal stories and get advice.
- National Down Syndrome Congress
- Blog: Holland Bloorview Kids Rehabilitation Hospital
- Blog: Support for Special Needs
- Blog: Hopeful Parents
- National Down Syndrome Society: Affiliates
Organize Relevant Information
A child with Down syndrome is just like any other child, needing doctors’ appointments, back-to-school clothes, and rides to birthday parties. Children with Down syndrome, though, have regular visits to medical specialists as well, and their parents meet regularly not only with classroom teachers (or case managers for younger children) but also with therapists, special educators, and other professionals. Developing a system to keep relevant information on hand provides a historical perspective for you and for the doctors and teachers involved, and enables others to care for your child in your absence.
Start keeping track of your child’s chronic health, treatments, and education records. Both the Children’s Hospital of Philadelphia and the Seattle Children’s Hospital offer guides to assembling Care Notebooks, 3-ring binders that include medical and educational information about your child. Their websites offer sample pages for these notebooks and a system to keep track of everything through the years.
- The Children’s Hospital of Philadelphia: Quick Guide to a Care Binder
- The Center for Children with Special Needs: Care Notebook
Find Good Doctors, Therapists, and Specialists
Children with Down syndrome have a different set of guidelines for routine tests, and a different set of growth charts. They benefit from regular appointments with specialists and therapists along with visits to a local pediatrician who can perform routine physicals and treat common illnesses.
Mary Pipan, M.D., Clinical Director of The Trisomy 21 Program at the Children’s Hospital of Philadelphia, explains the difference it can make to have at least one visit with a developmental pediatrician who specializes in Down syndrome. “A pediatrician who sees many children with Down syndrome has the knowledge to evaluate what areas are important to cover specifically, and how various diagnoses are best evaluated and treated. General pediatricians do not usually have the time to be as thorough as needed, and most pediatricians have only a handful of patients in their practice with Down syndrome, so they don’t have the breadth of experience acquired in a dedicated Trisomy 21 program.”
The National Down Syndrome Society provides a link to the most up-to-date health care guidelines. In addition, many major children’s hospitals have clinics devoted specifically to caring for children with Down syndrome.
Put Together Your Village
One of the joys of raising children comes from sharing their accomplishments with others. Many friends and family members would love to offer support, encouragement, and delight when your child learns new things.
According to Sue Levine, who conducted a six-year study of individuals with Down syndrome and their parents and siblings, published in American Journal of Medical Genetics, “Having a family member with Down syndrome tends to be an eye-opening and enriching experience. Brothers and sisters told us that they have more patience and acceptance because of their sibling. They treasure the small things in life, having learned important lessons in compassion and responsibility. The majority of parents shared with us that their outlook on life is more positive because of their child with Down syndrome. They affirmed that true success in life is not measured by accomplishments or possessions, but by love and small victories. While there are certainly struggles, as there are with parenting any child, the joys tend to far outweigh the difficulties.”
The benefits of knowing a person with Down syndrome can extend beyond the immediate family and into the community. If you and your family have already been involved in a faith community, stay involved. You may have to work with your local church, synagogue, mosque, or other place of worship to create structures and practices that allow your child to be included. The Elizabeth M. Boggs Center on Developmental Disabilities at Robert Wood Johnson Medical School offers a list of resources for congregations and leaders of many different faith communities so that families with children who have disabilities can remain active members.
Remember Your Child Is a Child First
As soon as Penny was born, I stumbled as I tried to describe her. It seemed somewhat inaccurate to call her my “Down syndrome baby” and yet I didn’t have another way to talk about her. I soon discovered “people-first” language, a way of using language to reflect the reality that children with Down syndrome are children first. I learned to refer to Penny as a “baby with Down syndrome” to emphasize her common humanity. This linguistic shift helped me to stop seeing her as a diagnosis and instead to perceive her as a child with particular needs.
Participate in whatever activities you both enjoy. For infants and toddlers, this might include playdates with other friends, joining a local music class or story hour, or just going to the grocery store together. As your child gets older, look for activities designed for children with special needs, often called “adaptive” programs. The Special Olympics runs a Young Athletes program for children ages 2? to 7, provides developmentally appropriate support for your child, and offers an array of informational and educational workshops for parents.
Low muscle tone and an array of other factors that often contribute to delayed speech and difficulty with articulation can affect kids with Down syndrome. Thankfully, speech therapists offer strategies to strengthen your child’s muscles and improve communication. The same muscles are used in both eating and speaking; feeding therapy, a precursor to speech therapy, often begins within the first year of your child’s life.
Many children with Down syndrome want to communicate, and will be able to communicate, months or years before their mouths will produce intelligible words. According to Brian Skotko, M.D. (www.brianskotko.com), a specialist in the Down syndrome Program at Children’s Hospital Boston, “Children with Down syndrome have a lot to say and they deserve to be heard and to be listened to, but while we are waiting for the language to set in it is imperative that we give them ways to communicate their wishes and desires. Sign language is one form, and many use picture communication symbols as they get older and other augmentative devices as they become whizzes at technology.” These various forms of communication “decrease frustration and behavioral problems while increasing relationships and friendships in those formative years.”
For infants and toddlers, baby sign language books, websites, and videos exist to introduce both parents and children to simple sign language. The book Early Communication Skills for Children with Down Syndrome, by Libby Kumin, Ph.D., offers further advice and resources for augmentative communication devices.
- Baby Sign Language: Activity and Language Resources
- SigningTime.com: Preview and Purchase Sign Language Videos
Focus on Your Child’s Strengths
Although your child will face physical and developmental challenges, he or she will have a distinct personality and distinct strengths. It can be tempting to focus upon the things your child can’t do or isn’t interested in, but this type of attention leads to a negative cycle in which both you and your child become frustrated. Another approach for children with special needs is called Responsive Teaching, where parents and caregivers respond to the areas of interest and strength that the child already exhibits, leading to positive emotions and growth on both sides.
Gerald Mahoney, Ph.D., one of the pioneers of the Responsive Teaching approach, explains that when parents are trained to respond well to their child, it leads to increased cognition and communication. Mahoney’s program offers 65 different strategies to help parents learn to be responsive. He lists behaviors such as, “reciprocity, a balanced interaction where parent and child are contributing equally and responding to and effecting behavior of the other person; contingency, where the parent focuses on responding quickly and supportively to behaviors their child initiates; shared control or non-directiveness, when parents are moderately directive with their child, which allows him to be more responsive; parental affect, which focuses on parents’ expressiveness, enjoyment, and acceptance of their child; and interactive match, in which parents focus on doing things with their child that are matched to the current level of developmental functioning and behavioral ability.”
We had the opportunity to hear Dr. Mahoney speak when Penny was only two months old, and we tried to take his advice and focus on her many strengths. Keeping a positive attitude became easier as we realized that there are organizations, doctors, therapists, teachers, other parents, and family and friends who want to support and encourage us every step of the way. Penny is about to reach her sixth birthday, and Down syndrome has largely faded into the background of our family life as we have fallen more and more in love with our daughter.
Copyright © 2012 Meredith Corporation.
Amy Julia Becker blogs at Thin Places (www.patheos.com/blogs/thinplaces). She is the author of “A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny” and she lives with her husband and three children in New Jersey.
All content on this Web site, including medical opinion and any other health-related information, is for informational purposes only and should not be considered to be a specific diagnosis or treatment plan for any individual situation. Use of this site and the information contained herein does not create a doctor-patient relationship. Always seek the direct advice of your own doctor in connection with any questions or issues you may have regarding your own health or the health of others.
By Amy Julia Becker
China, being home to over 1.4 billion people, currently faces an issue of housing for one of its most vulnerable and impressionable demographics: orphans. These 10 facts about orphans in China will show how many orphans are brought in to the adoption system in infancy with little to no knowledge of the journey to come.
10 Facts About Orphans in China
- Being an orphan does not necessarily mean that the child is parentless. In fact, many of the children seeking new homes have parents that are either unable to take care of them or have abandoned them for various reasons.
- According to a 2016 statistic, there are currently more than 460,000 orphans in China. The exact number of orphans is undetermined, as the statistic may only show state-operated orphanages.
- The vast majority of abandoned children suffer from severe birth defects and serious health issues. However, parents are unable to provide them with proper care; likewise, the state does not provide medical assistance for abandoned children.
- Many children, usually newborns, are usually given to baby hatches. A baby hatch is a small home where parents drop off children, where they hopefully will be taken to an orphanage.
- The Ministry of Civil Affairs began the baby hatch program as a response to the increasing number of abandoned infants. Currently, there are 32 baby hatches across China, and each hatch only accepts children from within the same city.
- Children with disabilities are usually unable to find homes that can provide specific medical attention, and after a certain age, some live within senior homes.
- Chinese orphanages are highly lacking in the proper education and medical resources needed for disabled children. As a result, disabled children are often excluded from activities necessary for social development.
- According to the Adoption Law of the People’s Republic of China, children over the age of 14 become ineligible for international adoption, at which point they are either transferred to a senior living center or have to find work.
- The potential parent of an adoptive child can refuse to adopt the child before the age of 10 without consent from the child. Once the child reaches 10 years of age, they are given the right to consent an adoptive relationship.
- It is also understood that if the relationship between the child and the adoptive parent begins to negatively impact the child’s life, the adoption can be terminated through a mutual agreement.
These 10 facts about orphans in China shed some light on a large and controversial issue. Although China is able to provide a multitude of opportunities for jobless adults, enact laws on senior care and ensure its citizens are not left behind, there is very little knowledge of or care for welfare-seeking children. In hopes of combating these issues, organizations such as Rainbow Kids work alongside orphanages and other nonprofits to provide the education and parental assistance needed to ensure the children’s safety and well-being, giving them hope and opportunities for the future.
– Adreena Carr
Photo: FlickrRead More
This review will better acquaint you with the origins of the festival, the traditional foods associated with it and the different ways it’s celebrated. This festival is one of many observed in China, which is home to a number of traditional celebrations.
Also known as the Mid-Autumn Festival, the Chinese Moon Festival falls on the 15th day of the eighth lunar month. It’s one of the most important traditional events for the Chinese.
The Legend Behind the Fest
The Moon Festival is rooted in many different myths. Legend traces the story to a hero named Hou Yi, who lived during a time when there were 10 suns in the sky. This caused people to die, so Hou Yi shot down nine of the suns and was given an elixir by the Queen of Heaven to make him immortal. But Hou Yi didn’t drink the elixir because he wanted to remain with his wife, Chang’e (pronounced Chung-err). So, he told her to watch over the potion.
One day a student of Hou Yi tried to steal the elixir from her, and Chang’e drank it to foil his plans. Afterward, she flew to the moon, and people have prayed to her for fortune ever since. She’s presented with a variety of food offerings during the Moon Fest, and festival-goers swear that they can spot Chang’e dancing on the moon during the festival.
What Happens During the Celebration
The Moon Festival is also an occasion for family reunions When the full moon rises, families get together to watch the full moon, eat moon cakes and sing moon poems. Together, the full moon, the legend, the family gatherings and the poems recited during the event make the festival a great cultural observance. That is why the Chinese are so fond of the Moon Festival.
Although the Moon Festival is a place where families congregate, it is also considered a romantic occasion. The festival legend, after all, is about a couple, Hou Yi and Chang’e, who are madly in love and devoted to one another. Traditionally, lovers spent romantic nights at the event tasting delicious moon cake and drinking wine while watching the full moon.
The moon cake, however, isn’t just for couples. It is the traditional food consumed during the Moon Festival. The Chinese eat the moon cake at night with the full moon in the sky.
When circumstances prevent couples from getting together during the event, they pass the night by watching the moon at the same time so it seems as if they are together for the night. A great number of poems has been devoted to this romantic festival.
As the Chinese have spread out across the globe, one needn’t be in China to partake in the Moon Festival. Celebrations are held in countries that are home to large Chinese populations.
A few tips before starting your mooncakes
- You need a kitchen scale to measure all the ingredients, accurate amount really matters to the final texture and taste.
- Success mooncakes=well balanced taste+well wrapped fillings+well kept shape (including the clear pattern on surface)
- If you are using homemade paste filling, make sure your paste is dry enough. Moist fillings might cause cracks on the skin.
- Cover all the fillings and divided wrapper dough with plastic wrapper to prevent drying out.
- Do not use too much flour to dust, otherwise it influences the pattern.
- Mooncake assembling needs patience and skill. I even spoil my first one during this batch(as it is my first batch this year). But wearing plastic glovescan make the process easier. But be gentle and slow down when pushing the wrapper up.
Let’s start making the beautiful mooncakes.
Attention: The following recipe is based on 7: 3 (filling vs wrapper) for 14 moon cakes around 50g. If you want to use ratio 8:2, adjust the ingredients accordingly. And this is based on 50g moon cake shaping tool. If your egg yolk is too large, divide them into halves and wrap in two moon cakes. I am using New Moon cake decoration mold to shape my moon cakes.
Firstly all of the fillings should be prepared previously. I usually make them in the previous day. I combine lotus seed paste, mung bean paste, red bean paste, and black sesame paste this time. But it is ok if you choose only one filling.
Treat the egg yolk: If you can find fresh salted duck eggs crack the egg and then wash the egg yolk in clean water. Set aside to drain before using. If you are using packaged salted duck egg yolk, remember to sprinkle some white spirit on the surface to remove raw taste.
Measure the filling: This recipe made 14 mooncakes and 8 of them are loaded with salted egg yolk (Measure: egg yolk+paste filling=35g) and 6 of them are pure filling (30g).
Wrap the egg yolk with bean paste firstly:carefully shape into round ball and set aside. It is quite important to cover all of the ready fillings with plastic wrapper to prevent drying out.
- When the crust dough is ready, use a kitchen scale to divide them into 14 balls (each 15g).Take one portion of the wrapper, press into a round wrapper (larger is better but do not break the wrapper) and then place one filling ball in center.
- Push the wrapper from bottom to top little by little until the whole ball is completely wrapped.
- Shape into a round ball. This step can help to make the skin as even as possible. Then slightly shape the ball into an oval so you can easily place it into the mould.
- Dust your mould with flour and then shake several times to remove the extra amount of flour. Use mooncake mould to shape it.
- When the assembling process is done, coat the ball with a layer of flour. Also coat your tool please. Place the ball on your board, then carefully cover with the shaping tool, press the rod and gently remove the cake from the tool.
Preheat oven to 180 degree C (356F). Spay a very very thin layer of water on the surface of the mooncake can help to avoid cracking surfaces. But too much water will spoil the pattern on the surface. Bake for 5 minutes to firm the shape.
In a small bowl, whisked one egg yolk with 1 tablespoons of egg whites. Transfer the mooncakes out and brush a very very very thin layer of egg wash on the surface. Low the oven temperature to 170 degree C and put them back to the oven and bake for another 15 to 20 minutes. I baked around 16 minutes.
When well-baked, transfer out cooling crack to cool down completely.
Keep and Serve
When the mooncakes are out of the oven, the skin is not oily like the ones on the market. We need the last step: place in an airtight container (I am using single package as I need to ship them to my family). Wait for around 1 or 2 days for the pasty to become soft (This process is named as”回油”, meaning the process of returning the oil to the surface).After this last step, mooncakes can be kept for around 2 weeks in fridge.