Special Books for Special Children
Amos Gikunda
The Griot Journal
Books play a huge role in a child’s development. Reading stories to children expands their horizons and stimulates their imagination. Furthermore, books help start discussions, provoke curiosity, and help them cope with difficult feelings. For this reason, families of special kids need to read books together.
In this article, we shall discuss authors’ processes when writing books for children with disabilities. We will also examine how they benefit the kids by sampling a few books on Turner syndrome and Down syndrome.
Turner Syndrome
Turner syndrome, also called gonadal dysgenesis, is a condition that affects females due to a missing X chromosome. In addition, it can be because of a partially incomplete sex chromosome.
The symptoms of Turner syndrome include infertility, heart defects, short stature, learning disabilities, and delayed puberty. This condition can be diagnosed before birth, infancy, or childhood. But in some cases, it can delay until the teenage years.
Although there is no cure for Turner Syndrome most of the symptoms can be treated. Diagnosed girls and women need to have their reproductive systems, hearts, and kidneys checked regularly. But overall, it’s possible for them to live a healthy and normal life.
A good example is Nadine Jaarsveld, who was diagnosed with Turner syndrome on her 16th birthday. Although she had noticed that her height was different than other people during her childhood, it didn’t bother her as she had embraced her height.
Although in high school, she was a little confused and scared after getting the results, she changed her attitude and became happy. She went on to do a degree in gender and later enrolled in a master’s program. Right now, Nadine is currently raising awareness and helping other girls and women.
Statistics and Stigma
Turner syndrome is the most common type of chromosomal condition. According to the National Organization of Rare Disorders (NORD), 1 out of every 2000 to 2500 females in the United States have Turner syndrome. This translates to over 70,000 girls and women.
Turner Syndrome is a genetic condition; hence it’s not influenced by race. In addition, most of the cases are not inherited from the parents. It occurs as a random event at forming the sperms or eggs. Turner syndrome can also occur during cell division, causing the affected person to have two chromosomes.
March of Dime s analyzed 10,000 live female births from 2014 to 2018 in North Carolina. American Indians had the highest number of cases, followed by white people. Hispanic and black came in third with an equal percentage.
Girls with Turner syndrome may be stigmatized due to their height and learning disabilities. This can have a negative impact on their school and social life. Therefore, teachers and parents need to teach their children about Turner’s syndrome. One way of passing the message is through books.
Turners Syndrome Books for Children and Family
Love makes a family is a unique book. It helps both parents and children understand and manage Turner syndrome. The author uses images and text to explain to the children why they are special. Images make the book fun to read and easy to understand.
The Author, Aimee Morrow, collaborates with a committee of program faculty members, genetic counselors, a children’s book author, and a pediatric endocrinologist. She applied all their experience and tips to produce one of the best books about Turner’s Syndrome. After writing the first draft, the book was revised by healthcare providers and parents of girls with Turner syndrome.
After the review process, the final copy of the book was printed and distributed to various organizations and clinics in the United States.
This special book is for girls with Turner’s Syndrome and their families. The Author, Kelsey Smith, was diagnosed with Turner Syndrome at 16. At this age, she didn’t know what to expect and had to navigate by herself through high school.
Kelsey Smith uses her experiences with Turner Syndrome in this book to inspire girls and their families. She shares her experience with love and honesty. Reading a story from someone who shares similar life experiences is mind-blowing. The author has made the book easy to read and understand.
Down syndrome
Down syndrome is a condition caused when abnormal cell division occurs. This event can lead to a partial copy or an extra full chromosome 21. The extra chromosome results in the physical features and development changes of Down syndrome. This condition causes the patient to be vulnerable to multiple systemic defects. It is important to note that not all complications occur in each patient.
Some of these complications include developmental delays, intellectual disability, heart disorders, and gastrointestinal disorders. All the complications can be managed with proper treatment and close monitoring.
Although the definition of Down syndrome comes off as too strong, many diagnosed people have achieved great things. With proper care and treatment, one can lead a normal life. The National Down Syndrome Society, has highlighted hundreds of success stories.
These people have successful careers in almost every industry. For example, these success stories have captured Photographers, advocates, business owners, DJs, inspirational speakers, customer service, interns, musicians, medics, and many more.
An interesting example is the case of Ashley DeRamus, an award-winning athlete, fashion designer, public speaker, and national advocate for people with Down syndrome. Ashley has won 43 Olympic swimming medals. Her drive to succeed has no limits. Not even Down syndrome could stop her from achieving her dreams.
Statistics and Stigma
Recent CDC studies show that approximately 6000 babies in the US are born with Down syndrome yearly. This means it occurs in every one of 700 babies.
As a chromosomal condition, Down syndrome is not influenced by race. One factor that increases the risk is having a baby at over 35 years of age. Ironically, most cases of Down syndrome are from children born by mothers less than 35 years of age. This is because many babies are born to younger mothers.
The stigma and anguish begin at diagnosis. Many mothers complain the initial communication comes off too negative. People with Down syndrome also face stigma because of their learning disability and body formation. Books can help minimize stigmatization since they help children’s parents and caregivers understand the condition through the author’s experiences or Knowledge.
Down syndrome Books for Children and Family
This is a part of a series of three books called “One Three Nine Inspired.” The first book talks about Autism, while the second and third cover Down Syndrome and Cerebral Palsy, respectively.
In each book, the Author, Lori, uses exceptional characters to illustrate the experiences of children living with the same conditions. Hannah is the lead character who explains Down Syndrome in detail so that both the child’s family and caregivers can understand. The Down Syndrome Book is the second in the series.
Although she explains how it affects her, Hannah does not shy from telling the kids how she is more like other kids. The author is also a mom and pediatrician. Besides, all her books are reviewed by other professionals in the industry before they are released for sale.
I am Connor is a book about a boy with down syndrome who sees himself like everyone else. He sees himself as no different than the other kids because he can do everything they can. The Author, Connor Rodriguez, delivers the message in a fun and light manner.
The book is great for solo or group reading. Furthermore, it offers a lot of conversation-starting opportunities. All the illustrations are well put in to guide people with Down Syndrome. The author makes it known to everyone that even if people with special needs may sound or look different, they are just like you and me.
Final Thoughts
All the books explain the different conditions in-depth yet in a friendly way. They blend real-life experiences and professional experiences to send messages to the children, caregivers, and families. All the books use illustrations such as animated characters to make it fun and easily grasp readers’ attention. Most of the books were reviewed by various professionals and parents before publication.
References
Birth Defects: Data for North Carolina. MARCH OF DIMES PERISTAT. https://www.marchofdimes.org/peristats/data?reg=99&top=16&stop=563&lev=1&slev=4&obj=1&sreg=37 Retrieved 2022
Butterfly Stories from people with Turner syndrome. Turner Syndrome Society of the United States. https://www.turnersyndrome.org/butterfly-stories Retrieved 2022
Facts about Down Syndrome. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html Retrieved 2022
Rare Disease Database: Turner Syndrome. National Organization for Rare Disorders. https://rarediseases.org/rare-diseases/turner-syndrome/ Retrieved 2022
Succes Stories. National Down Syndrome Society. https://ndss.org/success-stories Retrieved 2022
Turner Syndrome. MAYO CLINIC. https://www.mayoclinic.org/diseases-conditions/turner-syndrome/symptoms-causes/syc-20360782 Retrieved 2022