Down Syndrome: Our story!

Mum and Awele

…Story of an enlightened mother who has made life worth living for her 25 year-old daughter and other adopted children living with the condition
At 25, Awele Mordi is a very good cook, a trained photographer, administrator and life skill trainer. Only her physical traits give her away as a person living with Down syndrome. When she was born July 29th, 1987, her mother immediately noticed she had unusually flattened nose, single crease in the palm of the hands, low set small ears, small mouth, upward and inward slanting eyes, wide short hands with short fingers, and sandal like toes. These are major physical features of children with Down syndrome.
Presently with no known cure, it is a genetic condition in which a baby has 47 chromosomes, instead of the usual 46. It is widely believed and scientifically proven that such children may have delayed mental and social development, while as they grow, could feel frustrated and angry when they become aware of their limitations. But the latter is not the case with Awele as she is living and enjoying her life to the fullest devoid of the condition. All thanks to her mother, Mrs. Rosemary Mordi, whose doggedness, seeking information and help redefined Awele’s life and now, that of so many other children.

“To be honest, I cried; I asked God so many questions such as why me. Like other mothers, I felt really bad but eventually, I moved on to the denial stage. I started saying may be it might not even be Down syndrome. I told myself often that she might not have it because there are children with those facial features that yet do not have Down syndrome. The only convincing way is to carry out a chromosomal test since there are some babies that do not have the facial features but have the extra chromosome indicative of Down syndrome. Anyway, I held unto that, that it might just be a coincidence but after then, I saw more features and knew that with or without a chromosomal test, this my child has Down syndrome” Awele’s mother revealed.
When certain beyond reasonable doubt that her last child was with the condition, she decided to plan ahead. But her subsequent life journey with her daughter was made easier by members of her family who were quite supportive.
“I was favoured that I had a very supportive family. My husband was very much behind me which was very helpful because in that situation, a woman needs help from her family. If it’s something the woman carries alone, it becomes so much of a burden and she really cannot carry it all alone.
“After I left the hospital, I decided to plan ahead. First, I had known from the hospital that I would not have any help from the medical field, especially in that hospital because most of them knew next to nothing about this condition. Well, I told my husband and he advised I went to the UK with the child to know what to do, carry out the test at least to be very sure she had the condition and then plan ahead for her. And that’s what we did”.
On returning to Nigeria, Awele from a very tender age was integrated properly into her family without being made to believe she had any disability. Like her other siblings who do not have the condition, she was also always given domestic chores and responsibilities. All these, she successfully carried out.
“We never looked down on her, rather, we accepted her as part of the family. We never over protected her; we never made her believe that she had any disability; which is what most parents always do to the detriment of the children.
“I made sure I drew a balance even though I knew that she had a disability. I don’t treat her as a child with disability. I gave her chores like her other siblings but would give her extra time to do it. I never and still don’t compare her with the other children. But you can only do these when you have the right information because knowledge is power. So many families suffer from ignorance. They don’t treat such kids in the right way because they lack the needed information but I was able to properly equip myself to know what to do and I did it”.

Awele (left) dancing with her friends at an event

Moulding Awele into the industrious woman she is today was actually a process every child goes through but hers was quite different from the norm. When she was born 25 years ago, the Nigerian educational structure didn’t cater for children living with her type of condition, nor those with learning difficulties or special needs. Thus, her mother was left with no choice but enroll her in a private school and still got her a special teacher, while she mingled freely with her classmates.
“I made arrangement with a private school which owner had special education background. I told the school authorities that I wanted her to be in class with the other children; that way, she will learn everything from them, play and fight with them like every child should. This way, she wouldn’t get stigmatized or feel different. But I equally arranged for a special education teacher who brought her out of the regular class once in a while during lectures to teach her at her own pace so that she’ll fit in very well in the morning classes. I did this until she went through primary school”.
Unfortunately, as a result of Nigeria not having the needed post-primary educational structures for children with special needs, Awele couldn’t proceed further to the secondary school. Rather, she underwent vocational trainings after learning how to read and write in the primary school. This is now paying off for her.
“I didn’t prepare her to take common entrance examination to go to secondary school, in preparation for university education because I thought that I would be deceiving myself since we don’t have the structures for such in Nigeria. If it were abroad, she would have gone to the university, but here, we don’t have anything in that regards. I wanted her to at least be able to read and write, be able to know basic arithmetic and so on, in order to prepare her for what we call independent living. I didn’t want her to return to the UK where her siblings are and be a burden to anybody.
“We made her learn a vocation to be able to be on her own. After her primary education, she went back to the UK, spent two years in the college where they exposed her, trained her in independent living before she returned to Nigeria to help in the running of this organization”.
As a result of Awele’s condition, and the fact that so many Nigerian women with children living with the condition lock such kids indoors out of ignorance or out rightly abandon them, Mrs. Mordi in 2002 established the Down Syndrome Foundation, now located in Surulere, Lagos. When Awele returned to Nigeria, she has been assisting in running the organization as well as training other children living with Down syndrome.
It will interest you to know that Awele is a trained photographer and handles the camera very well! In addition she bakes bread, cakes, and other types of pastries and foods effortlessly and excellently. All these she learnt while in college.
“In college, they call it independent living; they train them in various fields but she actually majored in photography” the proud mum of a daughter who has turned out very well disclosed with overwhelming joy.
Wondering why she majored in photography? According to Mordi, while in school, her trainers discovered her flair for photographs and photography. In the first year, she was exposed to various areas of life so that she could be properly integrated into any society. Like her other classmates, she was sent on internship and had hers at Mac Donald’s. While there, she was assigned to different departments.
Awele who owns a professional camera and uses it very well is now a mentor to other kids at the foundation and assists in raising them.
“She attends to visitors, is very much involved in the educational training of the other kids because she does so many things such as baking bread, cakes, etc so trains most of the kids on these as well”.
Grooming her daughter into the present excited young lady who’s so full of life was no easy task for Mrs. Mordi because the Nigerian society still believes and is yet to outlive the myth about Down syndrome. Someone once tried convincing her that her child had spiritual problems and needed to be taken to healers! But for her being enlightened, she perhaps would have fallen for such claims.
“If I weren’t educated, and hadn’t sought needed information and help, I would have fallen into such wrong hands and then possibly cause more harm to my child. And that is what most families go through. Because of ignorance, they fall into wrong hands, and then the child is the one who suffers. There are so many issues involved in disabilities such as this that needs to be brought to the front burner for the sake of the child. The problem children with disabilities face are not the disability itself but the attitude of the larger society and the family” she explained.
Do you have a child living with Down syndrome or know anyone who has a baby with the condition? Here is Mrs. Mordi’s candid advice to you or such parent: “You have to accept the fact that the baby has limitations but must not overstretch it and at the same time not under do it because you could make the mistake of over protecting the child and not allow them do anything. This would not help the child; it would only drag him or her backwards”.
If it worked for Mrs. Mordi and her daughter Awele, it will certainly do for you!