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Managing Down Syndrome: Jessica shares her experiences

My younger brother who is 22 years old inspires this article. My mum was 41 when she had him. This may seem like an old age for childbirth and is possibly the reason why she had a Down syndrome baby. It was detected while she was pregnant that there was a baby with Down syndrome inside her.

When he was born, I was 7 years old. I kept hearing the word “Down syndrome” repeatedly in my home but I wasn’t sure what they were talking about. According to the Mayo Clinic staff, Down syndrome is a genetic disorder that causes lifelong mental retardation, developmental delays and other problems. This will be explained in a lot more detail in the second part of this series.

He was perfect to me and was truly the most adorable baby I had ever set my eyes on. I think he was a quiet one too. He didn’t cause us any problems or sleepless nights. Even though doctors had told us otherwise, he developed like a normal infant and my mum made sure he attended a regular school as opposed to a school for children with special needs. She wanted him to interact with everyday people.

School was a very tough venture for him as cognitive impairment is often delayed in individuals with Down syndrome, which leads to learning difficulties. Even though he was loved by a lot of people in his school, learning at the same pace with his classmates was practically impossible and he had to stay back in the same class year after year.

I’ll never forget the day I went to pick him up from school. He was probably about 12 years old and still in primary school (usually, at this age, in Nigeria, one should be in third year of Secondary/High school). I got to his classroom and saw two of his female classmates singing and dancing around him, poking him and making fun of him for being an ‘olodo’. (Someone who isn’t book smart). He didn’t do anything, he just sat there and I could tell he was very hurt. I was so angry, I didn’t care that they were little children, I just yelled at them and told them to leave him alone and I took him home. It was at this point that I felt that he should be in a school with children with special needs. At least, they wouldn’t consider him any different than them. These ‘normal’ children in this ‘normal’ school were not aware of his condition and had probably never heard of the term “Down syndrome” in their lives. They just thought he was a ‘dumb’ kid who had no ability to learn whatsoever and that made me angry.  On our way home, I asked him how he felt about what happened. He just said “Don’t mind them, they’re my friends”. All I could think was how can he still call them his friends after what I had witnessed?

He managed to finally get into Secondary school (High school) after that and that was an even more impossible task for him to accomplish, at least academically. But in other areas such as sports, general interaction with people and other recreational activities, he was as good as any other kid. He made a lot of friends

from school. Most of his friends have now either graduated from Universities or are about to graduate. He was not able to finish Secondary school due to the immense learning difficulty he was having so we took him out of school and found speech therapists and summer camps for him, which proved to be very helpful.

Today, he is one of the most loving and friendliest people I know. He’s 22 years old, has numerous friends, and interacts like a normal adult. He loves football, wrestling and music and currently works as a band manager. Research shows that while some individuals with Down syndrome find suitable paid employment, many others are volunteers, or hold no job. Individuals with Down syndrome who wish to work need to receive adequate training and support. This is not always readily available in all communities at present. In addition, employers should be made more aware of the benefits of employing someone with Down syndrome.

He is a very happy person who embraces life positively and loves his family very much.  Physically, he is short for his age and most people can probably tell just by looking at him that he has ‘something’. Some people may find it a bit difficult to understand him when he speaks and he is a bit shy sometimes and doesn’t like to walk up to people and speak to them first. Also, if he goes to buy an item by himself, he might not know how much change he’s meant to receive so he can easily be cheated. So these are the things we’re still working on with him. Individuals with Down syndrome need all the love and support they can get and should be fully included in family and community life. They now live longer than ever before. Due to full inclusion in society, many adults with Down syndrome now live semi-independently, enjoy relationships, work, and contribute to their community.

I got inspired to write this article after I realised that a good number of people had either not heard about Down syndrome or had heard about it but did not really know much about it. Part 2 of this series will be explaining in detail exactly what Down syndrome is, what the chromosome basics of Down syndrome are, how the extra genes lead to Down syndrome, what the risk factors for conceiving a child with Down syndrome are, and the characteristic features and symptoms of Down syndrome.

By Jessica B.

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Jessica B shares a three part series on her experiences with living with a beloved brother with down syndrome. She hopes to raise awareness on down syndrome throughout Africa.

 

 

References

Heyn, S.K. (PhD) et al. DOWN SYNDROME Retrieved from http://www.medicinenet.com/down_syndrome/article.htm

MAYO CLINIC WEBSITE, 2010 DOWN SYNDROME Retrieved from http://www.mayoclinic.com/health/down-syndrome/DS00182

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