New Telegraph

Agonies of mothers of special needs children

• I was called mother of a Python –Akinlosotu Doris

 

The daily life of a mother is often described as tedious, complicated and filled with unending tasks. Everyday life of a new mother, nurturing a new baby is like a repetition of unfinished tasks carried over from the previous day.

 

The silver lining to all the difficulties that come with becoming a mother is the joy of seeing the little one grow and go through different stages of development. It makes it worth all the sleepless nights.

 

If there is any truth in the stressful schedule mothers have to adapt to, then it would be unimaginable to comprehend how difficult life would be for a mother to a child with special needs.

 

A mother whose son was diagnosed with Cerebral Palsy when he was seven months old, Mrs Ogbuagu (not her real name) told our reporter that the agony of a mother of a child with special needs starts when her baby begins the immunization exercise.

 

At the immunization centre, the new mother would realize that her baby has a different development from other babies probably born within the same time with hers. Ogbuagu stated that it is extremely heartbreaking to see the progress in development of babies born to other mothers, who were delivered at the same period with you and yours look exactly the same with little or no changes. “At few weeks old, I noticed my baby was not doing much.

 

But like every mother, I held onto hope that every baby has a different way of growth. My agony started after we went for six months immunization and I realized that other babies were sitting on their own on the weighing machine. I started asking questions and then it dawned on me, that my baby has a problem.

 

From there on till date, 12 years later, it has been from one hospital to the other, from one laboratory to another to see if my baby can do basic things other babies do effortlessly. It’s not a situation you wish anyone. It’s like a dream you cannot wake up from. Your life is put at a stop.

 

But as bad a situation as it is, my heart skips a bit whenever I look at this special child that cannot help himself, not because he doesn’t want to but because it was not of his making. His smile has been what keeps me strong,” she said.

 

Ogbuagu, who admitted that there is no recalling all that she has been through without crying, explained that by the time she was pregnant with their second baby, she was in a big dilemma. Although, she was pregnant, she had to continue carrying her first son on the back.

 

“After I had my second child, I knew I was in a big dilemma of having to carry a new baby and a boy of four years old that cannot help himself. This dire situation was why I could not have a third child. It would have been extra tedious having to care for three children under age 6 that cannot do anything for themselves,” she said.

 

Approaching a mother whose child is living with disability or autism to share their story feels like mocking her situation to her face. It is like asking someone who is in pain to put in words how much pain he or she is feeling. With so much courage, our reporter met with another mother, Akinlosotu Bunmi Doris, whose son passed away after suffering from Cerebral Palsy for 7 years.

 

She stated that sharing her experience is like dragging her back into a heartbreaking past but for the sake of other mothers out there who may get courage to face their present situation better, she is willing to go back into that past. Bunmi Doris explained that her son was normal at birth. But at eight months, she noticed that the size of the head was decreasing and decided to go to the hospital.

 

“It was not a good experience at all. It is a memory I never want to go back to remember but for the sake of other mothers out there, who are in pains or who are still battling with situation of raising a child with special needs, I am willing to remember how much I went through.

 

“Any mother to a child with special needs, needs patience, patience and patience. When I mean patience, a lot is embedded in that word patience. It has to do with love in it.

 

It has to do with being extra loving. You have to go an extra mile to love these children because they cannot sit on their own, they cannot talk, they cannot walk, they can hardly express themselves.”

 

Feeding them requires about four to five hours. They cannot tell you when they are thirsty. For example, when my son is hungry, the only sign he can give you is smacking his tongue. If he is thirsty, you will only see him sucking his tongue. That is his body language that says he wants water.”

 

Before giving birth to his son, Abiodun Persey Akinlosotu, Bunmi Doris was a teacher with a little daughter, but had to resign to take care of her boy. She narrated that one of the many disadvantages of having a child with special needs is that no one would employ someone who would take sick leave almost every week.

 

All her savings and gifts from people were spent in hospitals, CT scans, tests, physiotherapy to see if the child could have improvement and buying diapers. Because of the peculiarity of the boy’s case, he could not eat all food. The food has to be made extra soft and the boy was placed on mostly cereal and wearing diapers was also a permanent routine.

 

Although she had no job and little or no support from her husband, Bunmi Doris was glad that God showed up at every point of need.

 

“At every point that cereal is about to finish or diapers is about to finish, God raised people to help. People I didn’t know put money in my hand. No one is willing to employ you with such a baggage of having to call in sick all the time because of your child. “I had to bury my pride.

 

There was nothing I could not do just for him to survive and feed well. People brought different opinions, like I should take him to home for children with special needs and leave him there. I said that I cannot leave my child for somebody else to take care of,” she said. Akinlosotu described having children with special needs with these words: ‘They are home breakers’.

 

Though it broke her heart to refer to her son as a child that came with sorrow, she affirmed that it was just the harsh truth for every mother facing the situation. “When you have that kind of child, we call them home breakers.

 

It is harsh but it’s true. A child that is supposed to come and bring joy, sorrow is attached to it. I got to see some other women in my situation who were sent away from their husbands’ house. Once people see me and my son, they call me ‘look at the mother of a gorilla’, ‘look at a mother of a python’.

 

“In Yoruba land, when a mother loses a child, they call her a witch. That was my reality when he died.”

 

“When my son died, I practically buried him myself. There was no one to help. I felt that my suffering was in vain when he died because I tried all I could. I cannot say I felt relief because your child is child no matter what.

 

He has always had seizures but the night before he died, he ran temperature throughout. My son died about 4:30pm in the evening and before 6pm, he was already turning black. I had to back him and took him to my father’s house. I asked my father to bury him for me.

 

“That was how the whole journey ended. “During his lifetime, there was no peace in the house. My in-laws suggested that my husband should take another younger wife that would carry a successful pregnancy and give birth to a healthy baby.

 

That my contraction process is already weak, that I am old,” she stated. Abiodun’s death left Bunmi Doris with scars from the battle. One of the gifts she refers to as souvenir she got from strapping her son on her back for 7 years and 21 days was permanent lower back ache which she suffers till date. Another scar is the trauma of not wanting go through child bearing again.

 

“I backed him all through his lifetime. I backed him for 7 years and 21 days. I gave birth to him January 2, 2009. He died January 22, 2016. With his growing weight and height, carrying him on my back came with serious pain on my neck, lower back and ribs. I still feel these pains even though it’s been five years since he left me. When I was still backing him, I didn’t feel the pains.

 

The pains came after he died and I stopped backing him. I was placed on painkillers for while. Till now, I cannot lift slightly heavy things. After taking care of him, I never thought of having another child. I don’t like to hear anything child bearing ever again after that.”

 

There have been stories of mothers abandoning their children with special needs. There are also the horrible ones where mothers to such children out of desperation poison their children with special needs because they could not handle the stress and public humiliation.

 

On this note, Bunmi Doris’ advice to the general public is to be considerate and kind with what they say to the next person. “Our words travel into people’s mind deeper than we believe.

 

Words like ‘mother of a gorilla’ would send any woman to do the unthinkable but I chose to love my child till he breath his last,” she said.

 

More so, Patricia Okosieme, a mother to a 24-year-old girl, Deborah, who suffers from Cerebral Palsy, described her journey as 24 years of tears. She said that all the years, she held onto the hope that one day, she and Deborah would smile and laugh about their travails.

 

According to Patricia, who decided to hand her daughters case over to God, presently, Deborah can eat by herself after so many years. She can go to the toilet by herself and to her, that is a big testimony compared to where they were coming from.

 

The pains, stigma and humiliation mothers to children with special needs go through is enough to teach parents to be thankful for having a healthy baby irrespective of the gender.

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