Owen and his Daddy comforting each other before surgery
A Unique Church
by Allison Swets
You may have never worshipped in a church with a child with special needs. If not, you are missing out. Why? Because they sometimes can add a unique perspective to the whole service.
My son Roger, who is ten with cerebral palsy, is quite a celebrity at our church. For his birthday, he gets a special visit from the pastor, and if the date happens to land on a Sunday, be prepared to hear a special prayer for him during the service. Afterwards, everyone makes a point to wish him a happy birthday, and his celebrity quotient rises just a little more.
Of course, church is one of his favorite places to go. What, with all that attention, great music, getting to sit next to his Daddy, and taking his obligatory snooze during the sermon no matter what we do to try and keep him awake? What's not to like?
Focus: Spirituality and Morality
Lessons in Contradiction
by Erin
One of the first things we learned about my daughter is that she does
not follow the rules. Her birth injury was so atypical and her
functioning initially so typical in the first few weeks after birth that her Neonatal
Intensive Care Unit doctors and nurses were surprised to learn that her injury was severe. As she has developed, she
has continued to blaze her own trail, teaching us the wisdom behind
seemingly contradictory statements that have direct application to the
daily life lessons she provides.
Why? My Personal Journey with Faith and Raising a Child with Special Needs
by Michelle Doty
I grew up going to church every Sunday and even had perfect attendance in Sunday school during my elementary years. I continued practicing my faith in college and into my marriage. I never questioned God or His power and was faithful to His word. As a child and young adult I had a fairly typical and uneventful life. I had never experienced anything close to suffering, loss or tragedy of any kind. The biggest loss I experienced was losing my dog of 16 years.
After having my daughter Campbell, not only was my world turned upside down, but my faith was put to the test. In the beginning, having a child with special needs brought me closer to God. I prayed, meditated and begged God that my daughter would be healed. I felt if I prayed hard enough and long enough that God would heal her and she would be better.
by Michelle Doty
I grew up going to church every Sunday and even had perfect attendance in Sunday school during my elementary years. I continued practicing my faith in college and into my marriage. I never questioned God or His power and was faithful to His word. As a child and young adult I had a fairly typical and uneventful life. I had never experienced anything close to suffering, loss or tragedy of any kind. The biggest loss I experienced was losing my dog of 16 years.
After having my daughter Campbell, not only was my world turned upside down, but my faith was put to the test. In the beginning, having a child with special needs brought me closer to God. I prayed, meditated and begged God that my daughter would be healed. I felt if I prayed hard enough and long enough that God would heal her and she would be better.
Selective Abortion of Fetuses with Non-Fatal Disabilities: Progress or Discrimination?
On the whole, I am pro-choice. I believe that it is up to an individual
woman to choose whether or not she wishes to have a baby in the early
weeks of her pregnancy. I recognize that others feel differently, and I
respect their opinions.
But things get very murky for me when it comes to terminating a pregnancy later on because the mother is not carrying the particular baby she wants. For example, in China, Indian, Pakistan, and several other countries, sex-selective abortion is very popular when the fetus is found to be female. Most of us here in the United States regard this practice as barbaric, uneducated, and frankly gendercide. Nonetheless, it occurs with great frequency throughout the world, to the point that China and other countries now have way too many men and not enough women. Ratios of 130 boys to 100 girls in many areas are not uncommon.
But what about termination of fetuses with genetic or congenital anomalies, such as Down syndrome? Studies have shown that up to 90% of fetuses with Down syndrome are aborted.1 Rates for spina bifida are similar in the US. These numbers may even increase, since prenatal testing it now recommended for all mothers, and earlier testing is available, leading more mothers to know earlier on their pregnancies that their babies may have disabilities.
But things get very murky for me when it comes to terminating a pregnancy later on because the mother is not carrying the particular baby she wants. For example, in China, Indian, Pakistan, and several other countries, sex-selective abortion is very popular when the fetus is found to be female. Most of us here in the United States regard this practice as barbaric, uneducated, and frankly gendercide. Nonetheless, it occurs with great frequency throughout the world, to the point that China and other countries now have way too many men and not enough women. Ratios of 130 boys to 100 girls in many areas are not uncommon.
But what about termination of fetuses with genetic or congenital anomalies, such as Down syndrome? Studies have shown that up to 90% of fetuses with Down syndrome are aborted.1 Rates for spina bifida are similar in the US. These numbers may even increase, since prenatal testing it now recommended for all mothers, and earlier testing is available, leading more mothers to know earlier on their pregnancies that their babies may have disabilities.
Fully Rely on God: Christopher's Story of Hope, Faith and Healing
by Kristi Pena
I started writing this article and then decided to start over. I have always been told since I was a child that I have the gift of writing, but on the subject I am about to approach, it has proven to be a challenge. I know how to place facts on paper, and though it is a fact that I am a believer in God, it has been difficult to tell you in words something I feel so strongly in my heart and soul.
I have been a child of God since right about the time I hit puberty. I have always prayed and thanked God for my blessings. I have always known during financial struggles, God will and has always seen us through. However, it was not until my youngest child was born that I learned about a term I would like to introduce to you:
by Kristi Pena
I started writing this article and then decided to start over. I have always been told since I was a child that I have the gift of writing, but on the subject I am about to approach, it has proven to be a challenge. I know how to place facts on paper, and though it is a fact that I am a believer in God, it has been difficult to tell you in words something I feel so strongly in my heart and soul.
I have been a child of God since right about the time I hit puberty. I have always prayed and thanked God for my blessings. I have always known during financial struggles, God will and has always seen us through. However, it was not until my youngest child was born that I learned about a term I would like to introduce to you:
F.R.O.G.
Fully Rely On God
Specialty Article
Trunk Support Options for Children with Low Trunk Tone
Children with a wide variety of conditions present with low muscle tone (hypotonia) in their trunks, making it difficult for them to sit up properly, stand, and walk. Some children have virtually no tone at all, and are completely unable to hold their heads up or sit up, while others are more mildly affected, with only minor deficits in sitting or walking.
Regardless of the level of hypotonia, most children can benefit from wearing a trunk support garment or device. These items not only help with functional activities like sitting and walking, but they also help to prevent spinal deformities, including scoliosis and kyphosis (curvature forward of the upper back).
Products range from simple compression garments to complicated hard plastic scoliosis braces. The choice of brace may depend on your child's needs, functional goals, and preexisting spinal deformities. Listed below are some of the most common devices, roughly in order from the least supportive to the most supportive.
Feature Article
As parents of children with genetic mutations, we strive every day to provide the best for our children, and we pray for solutions. Too often we are impatient about the manner in which politics, finance, law and the practice of medicine interfere or inhibit our ability to care for our children. I am as guilty as the next guy; when my irritation rises to anger, I lose sight of the best way to fight for my granddaughter. She is my precious grandchild. I care for her every day and she and her welfare are on my mind 24/7. Given that, I must be mindful that my priorities are not those of others, and in fact there are others whose priorities are extremely adverse to my granddaughter's interests. Are these adverse interests intentionally malicious? Frankly, most of the time, they are not. Nevertheless, there are cultural mores that are adverse to her interests.
Let me illustrate a point. Let's say I am a genetic specialist and a researcher who owns and operates my own lab. A few years ago, my wife and I had a grandchild that we subsequently learned had a CDKL5 mutation, which is what my granddaughter actually has. Let's say we become obsessed with this CDKL5 cure. After a few years, I isolate all known genetic sequences contributing to the disability, and develop processes that reverse some of the more damaging effects. Do I file patents that are exclusive and commercialize my findings, issue stock and become rich, or share the knowledge?
(Read More)
PLEASE NOTE: The articles in this edition represent the opinions of the individual authors and do not necessarily represent official positions of Complex Child E-Magazine.