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This blog was inspired by 31 for 21 & is about my wonderful family.

"As a mother, my job is to take care of what is possible & trust God with the impossible." ~Ruth Bell Graham

"Never look down on someone, unless you're helping them up!"

Wednesday, April 20, 2011

Some facts can be misleading...

     When I found out that it was a possibility that my baby was going to be born with Down syndrome, I began researching it.  Here are the facts that I found.
Down syndrome is a genetic condition in which a person has 47 chromosomes instead of the usual 46.
In most cases, Down syndrome occurs when there is an extra copy of chromosome 21. This form of Down syndrome is called Trisomy 21. The extra chromosome causes problems with the way the body and brain develop.  Down syndrome is the most common single cause of human birth defects.

Symptoms

Down syndrome symptoms vary from person to person and can range from mild to severe. However, children with Down syndrome have a widely recognized appearance.  The head may be smaller than normal and abnormally shaped. For example, the head may be round with a flat area on the back. The inner corner of the eyes may be rounded instead of pointed.

Some of the common physical signs include:
  • Decreased muscle tone at birth
  • Excess skin at the nape of the neck
  • Flattened nose
  • Separated joints between the bones of the skull (sutures)
  • Single crease in the palm of the hand
  • Small ears
  • Small mouth
  • Upward slanting eyes
  • Wide, short hands with short fingers
  • White spots on the colored part of the eye (Brushfield spots)
Physical development is often slower than normal. Most children with Down syndrome never reach their average adult height.  Children may also have delayed mental and social development. Common problems may include:
  • Impulsive behavior
  • Poor judgment
  • Short attention span
  • Slow learning
As children with Down syndrome grow and become aware of their limitations, they may also feel frustration and anger.  Many different medical conditions are seen in people with Down syndrome, including:

Signs and tests

A doctor can often make an initial diagnosis of Down syndrome at birth based on how the baby looks. The doctor may hear a heart murmur when listening to the baby's chest with a stethoscope.
A blood test can be done to check for the extra chromosome and confirm the diagnosis. Other tests that may be done include:
  • Echocardiogram to check for heart defects (usually done soon after birth)
  • ECG
  • X-rays of the chest and gastrointestinal tract
Persons with Down syndrome need to be closely screened for certain medical conditions. They should have:
  • Eye exam every year during infancy
  • Hearing tests every 6 - 12 months, depending on age
  • Dental exams every 6 months
  • X-rays of the upper or cervical spine between ages 3 - 5 years
  • Thyroid testing every 12 months

Treatment

There is no specific treatment for Down syndrome. A child born with a gastrointestinal blockage may need major surgery immediately after birth. Certain heart defects may also require surgery.  Obesity can become a problem for older children and adults. Getting plenty of activity and avoiding high-calorie foods are important. Before beginning sports activities, the child's neck and hips should be examined.
Behavioral training can help people with Down syndrome and their families deal with the frustration, anger, and compulsive behavior that often occur. Parents and caregivers should learn to help a person with Down syndrome deal with frustration. At the same time, it is important to encourage independence.
Adolescent females and women with Down syndrome are usually able to get pregnant.
If the person has any heart defects or problems, check with the physician about the need for antibiotics to prevent heart infections called endocarditis.  Special education and training is offered in most communities for children with delays in mental development. Speech therapy may help improve language skills. Physical therapy may teach movement skills. Occupational therapy may help with feeding and performing tasks. Mental health care can help both parents and the child manage mood or behavior problems. Early intervention is key to allowing people with Down syndrome to reach their full potential.

Expectations (prognosis)
Persons with Down syndrome are living longer than ever before.  Although many children have physical and mental limitations, they can live independent and productive lives.  About half of children with Down syndrome are born with heart problems, including atrial septal defect, ventricular septal defect, and endocardial cushion defects. Persons with Down syndrome have an increased risk for certain types of leukemia.  The level of mental retardation varies from patient to patient, but is usually mild. With the proper care, people with Down syndrome can lead normal, happy lives.

Complications

  • Airway blockage during sleep
  • Compression injury of the spinal cord
  • Endocarditis
  • Eye problems
  • Frequent ear infections and increased risk of other infections
  • Hearing loss
  • Heart problems
  • Gastrointestinal blockage
  • Weakness of the back bones at the top of the neck
     That was taken straight off of a website.  Now that I am a mother of a child with Down syndrome, I have learned a great deal about this extra chromosome.  The little something extra doesn't take away from who my son is & will become, it adds to it.  It's true, my son does have some of the characteristics listed above.  For example, he has a heart condition.  He has the beautiful almond shaped eyes, small ears, flattened nose, & wide, short hands.  But if you look at a picture of my husband at the age Troy is, they look identical (with the exception that Troy has my blue eyes).  Troy is extremely intelligent, not dumb, contrary to what some people might think.  For example, we were at Chancey's ball game last night.  He made friends with 2 of the cutest little girls...they played ball together.  After they stopped playing ball, he saw one of the little girls running by.  He stood up & said "ball!"  I turned around & saw the little girl he was playing with, only she didn't have the ball.  But he remembered that she was the little girl he was playing ball with, & he wanted me to know that he knew that.  He may not have been able to out right tell me what he wanted to say, but I knew what he wanted to say.  So how can he be labelled as stupid, or dumb?  I know that one day, he'll be on the same page as kids without delays.  He's already saying some 2 & 3 word phrases & we work constantly on skills he's lacking.  But it frustrates me, & other parents of kids with Down syndrome, when other people put them in a catagory.  You shouldn't look at a person & judge them based on 'what you know.'  Because maybe, just maybe, you don't know the entire story.  Just because someone has the physical characteristics, doesn't mean that they are incapable.  You can see a typical person & they may have the highest IQ ever recorded, but how do you know that by looking at them...or they may be the most ignorant person ever, how do you know?  You can be the most beautiful person on the outside, but have the most unattractive personality, or vise versa.  You wouldn't want someone to look at you & judge you, so why would you judge someone else?  Get to know someone before you form an opinion. 
     Now, I challenge you.  Look at my son.  What do you see?  You see a little boy with Down syndrome.  Okay.  Now, what do you SEE?  Do you see that he loves with his entire heart?  Do you see that he has had 3 heart surgeries & has had to fight for his life more times than we'd like to even consider at the short age of two?  Do you see that he's trying to be as normal as possible & that he has more determination in his pinky than I have in my entire body?  Do you see that he he's very intelligent & has his own way of expressing himself?  Do you see that he loves water & would be in the bath tub or swimming pool 24/7/365?  Or that he loves music & to be sung to?  Do you see that he loves to be read to...that he loves popcorn & blackeyed peas...that he knows if I get my shoes on, we're going "bye bye?"  He'll wave & say "hi" to anyone & he'll even blow them kisses, but that person takes one step closer to him, he'll turn away & shake his head "no."  But if he knows you, he'll go straight to you & love on you.  He knows the people he loves & when he sees them, he'll say their name.  He is very picky & wants what he wants, when he wants it.  But who isn't?  So just because he has Down syndrome, doesn't mean that Down syndrome has him.  That doesn't mean that he can't think for himself, do for himself, or speak for himself.  Yes, he needs more assistance right now.  He's not at the level that kids without Down syndrome are, but he's getting there.  One day, he will be caught up & I know that the world is a better place with him in it...I know because he has made me a better person.  I have learned that God didn't put Troy here to be a student, He put him here to be a teacher.  So, please, let him teach you. 

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