Real Stories: Alijah’s Story Every cloud has a silver lining. This is especially true for a parent of a child with special needs. While there are many storms and challenges to overcome, the days worth remembering are the days the sun shines through the clouds. Alijah Barnfield is the 2006-2007 Poster Child for Developmental & Disability Services (DDS) of Lebanon Valley. Born with Spina Bifida, he has had to triumph over many challenges in his four-and-a-half years of life. His mother, Penny, also had to overcome many trials. Fortunately, DDS was there to help steer the course. This is how DDS served Alijah and his family: DDS - Elks Home Service Nurse – provided home consultation services for Penny and helped prepare her home to care for a child with special needs, including the installation of a ramp to make the home accessible. DDS - Early Intervention Home Base Services – Since the time that Penny took Alijah home from the hospital, DDS’ therapists assisted Alijah in his development. An Occupational Therapist worked with Alijah to help him learn to feed, provide sensory stimulation and to develop fine motor skills. A Physical Therapist visited Alijah to assess and develop his ability to sit, roll and belly crawl. A Speech Therapist visited him to develop communication skills and Developmental Therapists taught Alijah to make choices and play skills. |
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DDS – Alley Learning Center Preschool – Today, Alijah participates in an integrated classroom where he learns from his peers. Therapists and teachers continue to work with Alijah to help him meet his developmental goals. They also help him adapt his physical limitations so that he can play and interact with the other children and teachers. Alijah has made considerable progress in four years. While he is unable to sit unaided, he is now capable of wheeling himself in a wheelchair. Periodically, he will need the assistance of an oxygen machine to help him breath; but, he is learning to kiss his mother Penny and to laugh and play games with others. Alijah teaches all of us that behind every cloud, the sun is waiting to shine. Alijah is one of 124 children currently receiving DDS services for developmental delays and disabilities. Penny, Alijah’s Mother, shares what she has learned about Spina Bifida: Today in society, many people are not aware of one of the most common and serious birth disorder to the nervous system known as Spina Bifida. There are sixty million women at risk of having a baby born with Spina Bifida each year. An estimated seventy thousand people in the United States are currently living with Spina Bifida. What is Spina Bifida? Spina Bifida technically means an open spinal column. An open spinal column means the spinal cord failed to form and close properly. This neural tube defect occurs during the first month of pregnancy. It can be detected before birth to determine if a woman is at risk of having a child born with Spina Bifida. A blood test called Maternal Fetal Protein is performed between the sixteenth and eighteenth week of pregnancy. It is used to check the blood for levels of a protein, called alpha-fetoprotein, which is elevated in about 75-80% of women having babies with Spina Bifida. There are two major causes of Spina Bifida. One is genetics, which cannot be preventable. The second cause of Spina Bifida is from lack of folic acid (vitamin B) in a woman’s diet. One way to help prevent Spina Bifida is for women to increase their folic acid intake. Several medical conditions are associated with Spina Bifida. One is known as hydrocephalus; spinal fluid that builds up inside the brain. It is also referred to “water on the brain”. If a child is diagnosed with this, he or she will have a ventricular shunt placed inside their brain to control the fluid. A shunt is a pump placed in the brain with plastic tubing attached. The tubing runs from the head to the stomach. A shunt will stay for life in the person. Another condition is Chiari Malformation; is when the brain stem is pulled downwards into the spine. Children that are born with Chiari have problems swallowing, vocal cord paralysis and arm strength. Depending on the person’s level of Spina Bifida determines whether their lower body extremities have movement. The higher the level is on the spine, the more chances of the person to be paralyzed. The lower the level is on the spine, the more likely the person will walk with braces or walker. Physical therapy services are involved with children and adults. The therapist also evaluates the child’s physical development. Spina Bifida affects children and adults living with Spina Bifida. In children and adults, it can affect their memory, comprehension and attention; with this, you develop learning disabilities. Children who are diagnosed at an early age with learning disabilities, have therapists such as; occupation therapist, developmental therapist and a speech therapist. In most cases, some adolescents also have problems with depression, social and sexual issues. I too, was unaware of this genetic birth defect, until my son Alijah was born with it four years ago. October is Spina Bifida awareness month. Since Alijah has received Early Intervention and now attends Developmental Disability Services of Lebanon, I became more aware with the fact that society does not have enough information about Spina Bifida. I feel honored to be able to help our community be aware of an uncontrollable birth defect that affects families everywhere. I am truly honored to have a child with development and disabilities. He teaches me.
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