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God's Faithfullness

My name is Glenda Parkman, and my home schooling experience began with my daughter, Rebecca, who is now 20-years-old. Rebecca was born on August 3, 1986, with several anomalies. She had a "funny-sounding" heart caused by the fact that one wall of her heart was thicker than the other, a condition found in an echocardiogram performed shortly after her birth. The second anomaly was Trigonocephaly (a particular pattern of premature suture closure, sutures being the cracks in an infant’s skull which allow for brain growth the first couple of years.) Rebecca also had an extra toe, severe jaundice, several strawberry hemangiomas (large reddish-pink birthmarks), and clenched fists. An umbilical hernia manifested itself in the weeks following birth.

Many prayers were offered up to God on Rebecca’s behalf. When she had a repeat echocardiogram performed at about 8-weeks-of age, we were so thankful to hear the doctor state that there was no longer any sign of a heart problem. In cases such as this, many doctors like to say that the problem has "resolved." I’d like to add; however, that when we came into the cardiologist’s office on the day of the retest, she had me sit in front of her desk while she finished writing a letter. The cardiologist shared with me, without my having inquired, that the letter was to the parents of a little boy who was recovering from a surgery performed to correct the same heart problem with which Rebecca had been diagnosed at birth!

As Rebecca began to meet developmental milestones we were, perhaps, even more excited than the average new parents! The Trigonocephaly, however, continued to worsen, and Rebecca’s head was becoming increasingly misshapen. Our pediatrician finally referred us to a geneticist. The geneticist took a medical history and referred us to a craniofacial surgeon but did not suggest any genetic testing.

We sought multiple opinions regarding the Trigonocephaly correction, and all of the surgeons felt that Rebecca needed the correction because of potential harmful effects to her development. Some very large studies done in recent years have reinforced our belief that the decision to have this surgery performed was the right one. The surgery was performed at 8-and-one-half-months-of-age. As hard as the surgery was on Rebecca, and on us, we did not want anything correctable interfering with her development.

During Rebecca’s long recovery God provided so beautifully. We had a young missionary friend who worked as a neonatal intensive care nurse between assignments. Lynn was 3 weeks away from going on another mission tour and did not want to sign a new apartment lease, so she came to stay with us. Lynn’s help was such a blessing during the first phase of Rebecca’s recovery.

After the surgery, we spent a long time helping Rebecca to regain lost skills and to acquire new ones, but we also experienced a time of peace. Our thinking was that, with the major surgery behind us, Rebecca’s growth and development would "catch up".

There were many moments of joy as Rebecca grew, but there were also troubling signs. Rebecca was somewhat late acquiring speech and extremely late in acquiring social speech. When she did speak (even to Mike and me) much of it was nursery rhymes or portions of dialogue she had memorized from children’s books, tapes, and shows. There was little attempt to really converse (even on a very basic level) or to pretend with dolls or other toys. Rebecca would answer yes or no questions, loved to be rocked, read to, and sung to, and was very receptive to being held by Mike and I (and a few members of the extended family). She made very poor eye contact, though, even with us. She rarely slept through the night, though we tried many

methods. We were consistent during each "trial" period and gave each method time to have the desired effect. We also tried using special lights which Rebecca was to sit in front of each evening. We had a good laugh during one "light therapy" session when we realized that everyone in the room was sitting on the edge of his/ her seat with eyes VERY wide open…except Rebecca! She was nodding off in front of the lights.

When Rebecca was 2-years-and-nine-months-old our son, Aaron, was born. He was, and is, a special delight to us, and he has had such an impact on Rebecca. Aaron accomplished most of his developmental milestones early, and he talked to everyone in the house. He would not accept being ignored and was more successful at drawing Rebecca out than anyone else.

When Rebecca was about 4, I began to consider homeschooling. My college degree was in Music Education; however, and I did not want Rebecca to miss out on learning something important because of a lack of knowledge or skill on my part. When kindergarten began, we enrolled Rebecca in a Christian School. I had visited the teacher beforehand and had shared Rebecca’s history. I took comfort in the fact that Rebecca knew all of her basics - letters, numbers, colors, shapes, etc. - and felt that surely they would work with her on her fine motor and social skills. They let me know within a matter of days that they thought Rebecca had something seriously wrong with her and said they "didn’t have the time or the space" to teach children with

special needs. One parent, who was on the board there, told me that special kids would mess up the school’s test scores. This was interesting news in light of the pamphlet the school had passed out to all of the parents at orientation. It contained a story about two families who took a trip. In one family the kids spent the trip riding in the family car. In the other family the kids were placed on a bus while the parents traveled in the car. The point, according to the pamphlet, was that sending one’s children to public school was the equivalent of making them ride the bus to one’s destination instead of allowing them to ride in the family car. Well, since there was no place for special kids in the "car," we decided to try the "bus!" This was not much better, as Rebecca seemed overwhelmed by so many children (22 per kindergarten class and 44 when the classes combined for activities).

At this point, Mike and I (FINALLY) decided to homeschool. We didn’t know much about getting started, but I had heard a few things that made sense to me. One helpful idea was that young children did not need to have information presented in the form of several individual classes per day, so I started out teaching only Bible, reading, handwriting, and arithmetic. Science and history concepts were introduced during reading. Physical education consisted mainly of outdoor play until such time as I felt that Rebecca and Aaron would benefit from more structured physical activities (sports and a P.E. class for homeschoolers).

Rebecca; meanwhile, was diagnosed with a form of strabismus (an eye muscle problem, the most common forms of which are "crossed" eyes and "wall" eyes). Rebecca was "wall-eyed" but had an intermittent form which is harder for parents (and doctors) to detect. She had been cocking her head habitually when trying to look at people, and I thought she may have a hearing problem. Testing proved otherwise. A thorough eye examination revealed the problem. Patching the "strong" eye and performing eye exercises failed to correct the problem, and eye muscle surgery was performed in December of 1991.

While waiting for the eye surgery to take place, I began to teach Rebecca at home. I had been reading to Rebecca since she was four-months-old, and she was eager to read, in spite of her vision problem. We began using a program called THE WRITING ROAD TO READING, which emphasizes learning letter sounds and lists of words first. After Rebecca had learned many individual words I began to read simple children’s books with her. She would cover one eye to help with tracking, and soon she was reading challenging material fluently.

The biggest problem area was handwriting. Though we waited to start handwriting until Rebecca’s eyes had healed, she still struggled because of her very weak thumbs and poor visual memory. A toy called the MagnaDoodle was being marketed at that time. By holding a small stylus, and pressing lightly on a screen, dark marks could be made. Rebecca was able to learn to write the letters C, O, and L on this toy. She could not write the other letters, because she had almost no ability to reproduce a letter simply by having looked at it.

Meanwhile, I had been thinking about how to facilitate writing with paper and pencil and how to overcome the visual memory issue. I bought some fat triangular pencils and placed one in her writing hand in the correct position. I placed my hand around her hand, in order to keep her from dropping the pencil. (Rebecca had been dropping it every time she tried to press the tip against the paper, because her thumb would "give way.") I wrote the letters with her, hand-over-hand, and we said clue words as we wrote to remind Rebecca of the movements necessary to produce each letter. (Saying the "clue" words took advantage of her strong auditory memory.) I did this with Rebecca every school day for over a year until I could feel her gradually "taking over" the writing process beneath my hand. Next, I lightly held her wrist, then her elbow, then her shoulder as she wrote until she was confident enough to write independently.

The next hurdle was arithmetic, but a wonderful program called Math-U-See made learning to subtract so much easier after years of frustration. The concrete manipulatives available for use with the program, and the way the concepts were presented, enabled Rebecca to grasp multiplication as well. I found other wonderful tools for teaching her to count money and tell time.

Rebecca began to develop scoliosis at about 8-years-of-age, but we are grateful that spinal surgery has never been deemed necessary. At age 11, we began to visit a sleep clinic again, and, after hearing Rebecca’s medical history, the doctor who ran the clinic recommended genetic testing. Finally, at age 12, Rebecca was diagnosed with Partial Trisomy 13q (Patau Syndrome), a syndrome which is considered "incompatible with life". We have come to consider the absence of a genetic diagnosis until age 12 a blessing from God. The majority of our friends whose children were diagnosed with Patau Syndrome prenatally were encouraged (or even pressured) to have an abortion.

Lastly, but most importantly, I want to emphasize that, frequently, when I had reached the limits of my knowledge and patience in trying to teach Rebecca a concept or a skill, I would cry out to God in prayer. Afterwards, Rebecca would often make such wonderful leaps in understanding or skill that I was truly amazed…and ashamed! One would think that a person who had experienced God’s help so many times would have been QUICKER to seek it and LESS AMAZED to receive it! Other times I would "suddenly" find just the right way to teach a concept or a skill, or I would meet a person with the very word of advice or encouragement I needed. In one instance, I felt compelled to buy a particular magazine off of the rack. There was nothing on the cover to indicate the presence of the lovely blessing inside – an article which proved to be the definite answer to a long-term prayer I’d been praying regarding Rebecca. I still have that magazine.

Presently, Rebecca functions about like a 9 or 10-year-old, but she has made a personal commitment of her life to Jesus, she continues to learn and to develop, and we know that God has a great plan for Rebecca’s life! She is very "compatible with life," and only God knows what the future holds for Rebecca, which, after all, is true for each of us!

Mike and Glenda Parkman have been married for 22 years. They attend church at Faith Chapel Assembly of God in Suwanee, GA. Mike has a degree in Electrical Engineering from Auburn University and an MBA from the University of Texas at Dallas (UTD). He is a P.E. (Professional Engineer) and presently runs his own Home Inspection business. Glenda has a degree in Music Education from Samford University (in Alabama) and taught school music for several years before having Rebecca. She homeschooled Rebecca for 13 years and homeschooled her son, Aaron, from Kindergarten until High School. Glenda is now Mike’s "front office" for Parkman Home Inspections, LLC. Aaron is a senior in High School and is taking all A.P. and Honors courses. Rebecca is attending a private, special needs day school for the second year in a row and is enjoying it greatly! Rebecca also plays on a special needs softball team and likes to watch baseball games on television. Rebecca’s story, along with the stories of others with various forms of trisomy 13, may also be found at www.livingwithtrisomy13.org in the Photo Album.

 

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