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Down syndrome is usually described as a congenital defect caused by an extra chromosome, characterized by moderate to severe mental retardation and marked physical traits that are often easily identifiable in the person with the condition.
The above information can be found in medical books and dictionaries. What is not described are the initial heartbreak, struggles and coping of the parents and, especially, the very special gifts the unexpected joys, triumphs, love, sweetness of spirit and affection brought by the child with Down syndrome.
Patty Sprague recognized the need for parents and families with Down syndrome children to learn about the true-life experiences of others with these special children, to have someone to relate to and who understands the trials and, more importantly, the triumphs.
Patty wrote a book, “No Tears for Tabitha,” in 2006, dealing with the struggles and challenges before, during and after daughter Tabitha’s birth.
Now, she continues, as Tabitha grows into her teenage years, to reach out to others.
Meet Tabitha Thompson and her parents, Patricia and Randy Sprague, as Patty shares a portion of their story, “Letters In The Sand," which was recently published in a book entitled, "Gifts of Courage.”
“It would be impossible to home-school Tabitha. There’s no curriculum labeled ‘For a child with Down syndrome.’ Besides, I’m not specialized in teaching a mentally challenged child” are the words with which Patty began the article “Letters in the Sand.”
In discussing the article, she began by explaining the condition. “Down syndrome children have one more chromosome than other children. The child born with Down syndrome has 47 chromosomes instead of 46,” she said.
“The reason it is called Down is because a scientist, John Franklin Down, noticed there were certain characteristics that were common to these children that were born with this. A lot of them have the ears and the eyes that are different, some facial structures and most of the time you can tell someone who has Down syndrome, so there are a lot of common features in it. That is the only reason it is called Down syndrome, which really kind of makes it sound bad. But they are really very ‘up’ children and they have a lot of good things about them.”
There is a book, “Gifts,” which contains a lot of stories about babies born with Down syndrome. “That book did very well, so they did another one called, “Gifts Two,” and this tells how people with Down syndrome enrich the world,” Patty said.
“There are 79 different stories by mothers, teachers, aunts, uncles and siblings. The money raised from this book is used to give the book to parents who have Down syndrome children, so they would be much more aware,” she said.
She received no compensation for her contribution to the book, except a copy of the book.
“When I had Tabitha 14 years ago, they didn’t have a lot of good personal stories, and that is what I searched for in the libraries.
“There were medical books, but no personal stories. These are wonderful stories in how they do enrich the world,” she said.
Also in the book is a story by Ashley Henna, about her little brother, Payton, who has Down syndrome. She wrote their story of how he changed her life and goals and has inspired her to be active in the Down Syndrome Association in St. Louis.
“Letters in the Sand”
Patty explained her contribution to “Gifts Two.”
“Tabitha was in and out of the public schools. I’m not putting down the public schools; there are a lot of wonderful, wonderful teachers in the public schools.
“I wanted my child to be taught Bible reading and Bible stories, and they just can’t do that,” she said. “She loves music, and I wanted her to hear Christian music. I struggled with it, because I felt like I was not capable or specialized in teaching her. But you know what, God gives that gift to mothers and to fathers,” Patty said.
She tried for two years to keep Tabitha in public schools, even volunteering signing up as an aide in the inclusive classroom.
Patty was told that extensive testing gave Tabitha’s highest developmental age at 3 years and 11 months. The lowest was 1 year, 11 months.
As she watched Tabitha struggle and lag behind, she continued to feel in her heart that she should home-school her.
Patty began preparing herself, with curriculum ideas, special-needs forums; developed a schedule, activities and lessons; purchased alphabet cards, number flashcards, etc.; and created worksheets for Tabitha.
Randy made a huge flannel board on which she displayed the flash cards, and school began.
There were, and still are, times that were very challenging, such as frequent sinus and ear infections, struggles to keep Tabitha motivated and situations that required flexibility and imagination on Patty’s part..
In the book, “Gift Two,” Patty shares much more of the touching, sincere account of their home-schooling experiences, which are still in progress. She describes it as a tough, but gratifying, job.
A particularly gratifying and precious moment came unexpectedly when Patty and Tabitha were on an outing to the park and Patty was showing her daughter how to letters in the sand with a stick.
Tabitha drew the letters MOM very clearly and said, “See…MOM,” looking up at her mother “with a her sparkly eyes and her big, toothy grin,” Patty said.
“I hugged her – in that moment all the home challenges and frustrations of home schooling vanished completely, leaving only the joy of Tabitha’s love letters in the sand.”
They have been taking part in the activities of Down Syndrome Awareness Week. The YMCA in Vandalia is participating in a sports program for those with disabilities, including Down syndrome.
For more information, you are invited to e-mail Patty Sprague at email@example.com.