She knew immediately her daughter was handed to her after delivery that something was wrong. Tears, hot tears rolled down her cheeks. She was not rejecting the gift from God but deep down, she wished it was different. It is a natural thing for people to want the best. After all, God saw everything He created as good. History tells us that something happened along the way and things changed from their original plan. However, that doesn’t change the “good” from God’s perspective. To the parents of the child with Down Syndrome, the good from God has come with a dent. It doesn’t matter if the doctors and nurses delay in informing parents of the diagnosis, a mother knows as she soon as she sees her baby. The knowledge that something is different in a child does not in any way prepare the parents for the long journey ahead. Make no mistake, the care for a child with Down’s syndrome is an arduous task. The parents are confronted with the idea of the loss of a ‘perfect child’. The parents’ response to the child will greatly influence decisions on future care.
Information is key to every life attempt. The health practitioners should be tactical in informing parents of their child’s diagnosis. How the parents receive the information will determine their acceptance or denial of the child. It is necessary that health practitioners supply the parents with adequate information and answer their questions regarding developmental potentials and growth. Parents need to visit health professionals who will counsel them and joining a parent group or help-line will be of great benefit to them.
Parents should learn all they can so they will be able to prevent physical problems. A child with Down’s Syndrome is prone to have physical problems. The hypotonicity of muscles and hyperextensibility of joints complicate positioning. Holding the child is difficult and cumbersome . The child is to be wrapped in a blanket before picking him up to give security and strength. Unlike a normal child that clings to the body when carried, the child with Down’s Syndrome doesn’t . This lack of clinging or molding is due to their physical characteristics and not a sign of detachment.
The child’s underdeveloped nasal bone causes a chronic problem of inadequate drainage of mucus making their nose constantly stuffy. This causes the child to breathe through the mouth increasing the exposure to upper respiratory infections. The child’s nose must be cleaned regularly, his mouth rinsed with water after eating. The child’s position should be changed regularly. The pooling of mucus in the nose will always interfere with feeding. As the child breathes through the mouth, sucking for a length time is reduced because of his need for air. The child eating solid food may gag on his food occasionally. For this reason, parents are advised to clear the child’s nose before each feeding. Give small, frequent feeds. Feeding time should not be hurried as the child needs to rest in between feeds. The tongue that protrudes is not an indication of refusal to eat but a physiological response. In feeding such a child, small but long straight-handled spoon should be used to push thee food toward the back and side of the mouth. The child’s eating habits should be monitored to avoid obesity as excessive weight gain can impede motor development. For skin care, soaps and body lubricants should always be used to prevent cracking of skin and infection.
Mothers are the ones that suffer the ‘stigma’ associated with Down’s Syndrome. Even as civilized as we are now, people attribute the abnormality to something that the woman must have done wrong when she was pregnant. We are always quick to forget that it takes two to tango. Some fathers, due to poor judgement or lack of knowledge, abandons the woman to care for and nurture the child alone. It then becomes “her child” and no longer “our child”. Both parents and other family members need to have all information they can to be able to help this extraordinary child. If a child that has down’s Syndrome has a supportive family, the world will not bring him down. One thing I strongly believe is that parents, especially the mothers should snap out of self-pity. It should not have happened to you but as it has, you have to move on for your sake and for the sake of the gift God has given you. Parents should regularly assess their child’s development and set realistic goals for the child. DO NOT PUSH THE CHILD OVERBOARD. Let the child develop one day at a time.
I have seen mothers that gave up on their lives because they had an ‘extraordinary ‘ child. That would not have been so if the parents had adequate information which will enable them to learn self-care skills for themselves and the child. The child’s developmental ability will determine if the child will have an inclusive or special education. As the child grows into adolescence and maturity, their bodies will change. Parents should not shy away away from getting counsel for their child in the areas of physical maturity, sexual behaviour, marriage and family.
Is the road bleak for children with Down’s Syndrome? Definitely No. Any child can become what he wants to be with the right environment and teaching. It is sad to see that most children with Down’s Syndrome are neglected and left to live just as the day goes by. These children are to be handled with special warmth. We, as the parents or members of the family may think that a calamity has befallen the family and get so selfish that we forget that the child is human too. Sometimes, I wonder what goes on in the minds of such children, especially when they see their mates doing normal things that they cannot do. What happens in their mind when they come of age and find out that no one wants to love them because of who they are. What happens in their mind when the child is very hungry but mummy is so much in a haste that she cannot wait for him to catch his breath while he feeds? What happens in their mind when the child at the playground will not allow her to share the swing? These kids go through a trauma of their kind too. Maybe, the way they are treated is the cause of their rebellious acts and tantrums too. Action begets actions too.
People have started accepting children with Down’s syndrome as people with equal rights too. Actress Jamie Brewer known for her roles in the American Horror story appeared on a catwalk during the New York Fashion week. She wore the dress designed by Carrier Hammer as part of Hammer’s “Role Models Not Runway Models” show. Max Lewis, the 12 year old London boy that took Hollywood by storm are among the people that defied their natural challenges to excel in life.
Karen Gaffney is a 30-year-old swimmer who, despite being crippled, swims for almost two miles a day, five days a week without getting stressed. The obstacles she faced growing up were made easier with her family’s patience and determination. She speaks for people with people with Down’s Syndrome and participates in swimming challenges. She also has a Non profit Organization called Karen Gaffney Foundation. You should check out more about her on her website http://www.karengaffneyfoundation.com. Madeline Stuart, an Australian teen model hopes her dream career will “help change society’s views of people with Down’s Syndrome and lead to greater acceptance.
We meet people with Down’s Syndrome in schools, hospitals, churches, meetings and in public places too. It is left for us to change our perceptive and remember that they are not imbeciles, neither are they witches nor wizards. Their mothers did not do any abnormal thing when she was pregnant with him/her. Such things happen so that we will show that truly we love God by the way we love people around us.