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Special Education: Understanding Down Syndrome

 

Introduction

Cute isn't she! Can you tell just by looking that something is wrong with her?                                                                                                                       

During pregnancy most parents have hopes and dreams for their future child. When the baby is born with down syndrome their dreams are shattered - they are shocked and confused. When you are told that your child has down syndrome, it would be exceptional not to feel sad. Parenting a child with Down syndrome often comes with many challenges, however these can be made easier if parents educate themselves on the condition and shower their children with love.

What is Down Syndrome?

Down syndrome is a genetic condition (i.e. something you are born with, which is present in the baby from the moment of conception) caused by the presence of an extra chromosome. Chromosomes are tiny particles, which are present in every cell in every tissue in our bodies.  They carry the ‘blueprint’ for all the characteristics we inherit.  This blueprint is carried in the form of a coded message in a chemical substance called DNA.  There are 23 pairs of chromosomes in each cell, hence 46 altogether.  One of each pair comes from the father, one from the mother.

In 1959, a French geneticist, Professor Jerome Lejeune, discovered that down syndrome was caused by the presence of an extra copy of chromosome 21, making 47 chromosomes in all. A ‘syndrome’ is a collection of signs or characteristics.  The name ‘down’ comes from the English doctor, John Langdon Down, who first described the syndrome in 1866. Physical characteristics include: looser muscles and joints than other babies; round head, which is smaller than normal; small low-set ears; a flattened nose, skin folds over the inner corner of the eyes; a large tongue that protrudes from a small mouth which results in a delay in speech or a speech defect. 

Children born with down syndrome have lower than average birth weight and put on weight at a slower pace than other babies. Some babies may have a single crease which runs right across the palm of the hand. Children with down syndrome also all have a certain degree of learning disability (intellectually challenged) and a variety of health problems e.g. visual, hearing and heart conditions. The degree of disability varies from person to person and it is impossible to tell at birth what that degree will be. The extra chromosome means that your baby will be slower to reach his/her milestones and will have a certain degree of learning difficulty. However, most children with down syndrome do learn to walk and talk, ride a bike and read and write. It’s just that their development is usually delayed.

Born Different

My husband and I are teachers; I was already thirty-eight years old and my husband forty when I got pregnant with our second child. Our son was almost eight years old at the time. The news no mother wants to hear thundered in my ears like the roaring sea: “Your baby has a disorder.” I was devastated at the news. I began questioning God: “Why me?” “Could I have prevented it?” I quizzed. But there is no answer to that question. Jada Richards was born on June 18, 2005 in Mandeville, Manchester. The paediatrician at the hospital did not voluntarily say what was wrong but pointed out that Jada had floppy muscles which could be signs of a condition. He asked us to get a second opinion. I took Jada to my son's paediatrician in May Pen who confirmed the inevitable. At first, the doctor was not certain but insisted that we do a heart test as children with down syndrome are usually susceptible to having heart conditions. Incidentally, my husband accepted more readily and said he didn’t care as it was his child.

Image may contain: people sleeping and indoorHaving got over the initial shock, I began to research in order to educate myself as to this mountain I had to climb. The disorder was just half of the problem as Jada had a heart condition known as Atrio Ventricular Septal Defect (AVSD) which was common in most children with down syndrome. This means that she was born with a hole that opens in the four chambers of the heart, one atrioventricular valve exists rather than two. The red and blue blood mixed together freely. The one AV valve did not work well and caused blood to regurgitate (re-enters the top Chamber of the heart) thus affecting the direction and the pressure of blood to flow and impose a strain on the heart and lungs.

Jada’s operation was done when she was 7 months old. Usually this surgery has to be done in the first 4 months as after that it becomes very risky. Jada’s surgery was done in Cleveland, Ohio in the United States at the cost of US$20,000.  Jamaica was not equipped for this type of surgery as the after care is most important.

 

The operation is done through a median sternotomy (chest incision). Correction of the AVSD was done with patches to separate the top two chambers of the heart from the bottom two. Two reasonably functioning valves are made from the one AV valve. This corrective surgery lasts between 5 to 6 hours and enables the child to function and develop better. Many children have had surgery done at the Bustamante Children’s hospital.

Development Phase

Acceptance

In order for growth and development to take place you have to first accept that your child is special. This is the time to find out all you can and prepare your mind to deal with whatever comes. This is no easy feat and you have to surround yourself with positive people in order to get the support that is needed.

Early Intervention

Although children with down syndrome experience developmental delay, Jada’s experience is testimony that early intervention can produce positive results. When Jada was still very young, we registered her with The Clarendon Group for the Disabled CGD (A group that caters to children with special need). Through this organization Jada’s caregiver received training on how to care for her at home and learnt special exercises to help her muscles to develop. She was fortunate to be assigned a physiotherapist who was here from Germany at the time. We would prop her up using cushions in the sofa to help her to sit up. To help Jada to walk, we would allow her to stand on our feet and walk with her. Despite what the professionals had said, Jada started to walk before her second birthday.

 

Image may contain: 2 people, hat and textJada attended a regular basic school from age two plus until she was seven years old. She was then assessed and placed at Hazard Primary and Special Education Unit to complete her primary education. During every phase she attended and participated in both graduation exercises. She was again assessed prior to her transition to high school. At her assessment she was recommended for and is currently in Grade 8 at Windsor School of Special education.

Inclusion

We do not see our daughter as being disabled. She is capable of doing so much if given the opportunity. She is very polite and is learning within her capabilities. Through early stimulation, children like Jada, can do far more than is expected of them. We do not limit our child. She is included in everything the family does. She rides her bicycle, plays games on the computer, turns on the television, operates the VCR, bathes herself, dress herself etc.

Tips for Parents

  • Learn about down syndrome. The more you know, the more you can help yourself and your child.
  • Love and play with your child.
  • Encourage your child to be independent. For example, help your son or daughter learn self-care skills such as getting dressed, grooming, and doing laundry.
  • Give your child chores.
  • Work with the professionals who are working with your child.
  • Find out what your child is learning at school. Look for ways to apply it at home. For example, if the teacher is reviewing concepts of money, take your child to the supermarket with you to help keep track of the money you are spending.
  • Look for social opportunities in the community (such as Scouts) or activities offered through the department of sports and leisure. Joining in and taking part will help your child develop social skills and have fun.
  • Talk with other parents whose children have Down syndrome. They can be a fountain of practical advice and emotional support.
  • Be patient, be hopeful. Your child, like every child, has a whole lifetime to learn and grow.
  • Take pleasure in your beautiful one. He/she is a treasure. Learn from your child, too. Those with Down syndrome have a special light within; let them shine.

Coping

If we could look past the “dis” we would see the "abilities" in each other. I prefer not to see my child as disabled but rather as being differently abled. We are all equal in the sight of God. God made us all with ability – the ability to do his will. We are created special because Psalm 138 verse 14 reminds us that “I’m fearfully and wonderfully made." Early intervention, improved medical care, parent education and increased social acceptance result in children with Down syndrome having better skills and higher levels of functioning. The more you know about the condition the better you are at coping with it. I act as a volunteer counsellor and mentor to new parents with a child with Down syndrome. Family support is a very necessary tool in coping with a child with Down syndrome.

The Jamaica Down Syndrome Foundation (JDSF), of which Jada is a part, was established in 2007 to provide assistance to children born with down syndrome and their families. It is a registered company committed to empowering by way of education and communication. It is a non profitable organization which serves as resource to educate and increase the awareness of communities and children with Down syndrome, including their caregivers, teachers, medical professionals and general public. We have meetings every other month which culminates in a Fun day in Ocho Rios where the children are feted by the foundation.

Contact details:

Jamaica Down Syndrome Foundation Ltd.

Unit 10, 1 Stanton Terrace Kinston 6. Telephone 978-0829.

Email: jamaicadownssyndrome@cwjamaica.com

Website: www.downsyndromejamaica.org

 

What You Can Do

March 21 is observed as International Down’s Syndrome Day. March 21 is symbolic in that the condition is also referred to as Trisomy 21, where the 21st chromosome divides into three instead of 2; hence March 21 (March being the third month and 21 for the 21st chromosome).

The JDSF needs your financial support as we are funded entirely by grants, donations and fund-raising activities. We welcome assistance from individuals and organisations. Our annual Fundraiser is “Lift Up Downs Concert” held at Campion College the third Sunday in March.

Our message to other parents is simple: “Love your children no matter what their conditions are. As my husband always say “God gives special people special gifts”. We are blessed to have been given this special bundle of joy, Jada.

 

Profile of the Writer

Judith Richards is an educator with thirty-one years’ experience teaching at the primary school level. She has a Bachelor’s Degree (First Class Hons.) in Primary Education, Certificate in Human Exceptionalities and Certificate in Supervisory Management. During her sojourn in education, Mrs. Richards rose to the rank of Vice Principal and then Principal. She is currently the Principal of Alley Primary where she has worked for the past 25 years.

Mrs. Richards is a Director on the Board of the Jamaica Down’s Syndrome Foundation. In 2018, she was awarded the Badge of Honour for Meritorious Service to Education and in particular Special Needs. Mrs. Richards has also completed Rounds 1 and 2 of the Effective Principal Training Programme (EPTP) at the National College for Educational Leadership (NCEL). She is also involved in her church and has done several motivational talks on Raising a Child with Down syndrome.

 

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