She admits feeling alone, lonely, and not getting much support from the people around her, so she resorts to building online friendships with mothers of special needs children to get some respite.
When single mum, Owodunmi Mustapha, learnt that her only son had a developmental delay, she was in denial. She didn’t believe that a healthy-looking boy would have issues developing like his mates.
Her attention was first called to the fact that he was bumping into things and it was suspected that he doesn’t have coordinated movement of his legs. She was then referred to a health practitioner for assessment. After he was diagnosed with developmental delay, Mustapha started helping her son live a normal life like other children. She had to enroll him for a course designed for children with special needs.
“I invest a lot in therapeutic toys because my son loves holding on to things,” she said. “You will never find him without holding something no matter how small. I buy him therapeutic balls designed for children with special needs.”
Support systems for special needs children
According to Mustapha who resides in the UK, there are lots of support systems over there that help special needs children live good lives. These children are referred to early intervention service from age 1-5 if they won’t be enrolled in school. She chose to let her son transition to mainstream school and he has been transferred from early intervention service to primary care service.
She said: “We get support in such areas like in physiotherapy, occupational therapy, and speech and language therapy. We also get free incontinence service. I was advised not to interrupt his sleep as it affects him during the day hence the need to keep him in pull-ups. He also has a Special Needs Assistant that works with him in school for safety reasons.”
Even though she loves her son and is determined to help him live a good life, Mustapha gets frustrated sometimes especially when she’s trying to explain things to him or correct him and his mind is set on whatever he already conjured up on his own.
One thing that scares her about her son is the fact that he doesn’t sense danger. He often harms himself like intentionally bumping his head on the wall or rolling down the stairs. For Mustapha, handling people who treat her son differently is the hardest part of being the mum of a special needs child. She wants her son to be treated like any other child and not given preferential treatment because he has developmental delays. “All I can do is let people know that he’s like every other child and should be treated as such. But his inability to sense danger is one of the reasons I am always with him.”
Dealing with bewilderment and others’ perception of your child
Single mum, Esther Omoze’s story reads like Mustapha’s when she told Saturday Sun that raising a child with special needs leaves you confused most of the time. This is because you haven’t and can’t experience life like they do. Sometimes, you don’t know if you are doing enough or even doing right for your child. You wish you had a manual. According to her, raising a son with special needs is like a maze. You are lost in their world, they are lost in yours. Their reality isn’t yours and yours isn’t theirs.
“The helpless feeling of not knowing what will become of your child in your absence or how they would cope if you are not with them is heartbreaking yet you find strength to keep going by reading, learning and trying new things to help your child.”
Omoze revealed that she is accustomed to the strange looks she gets from people when she goes out with her son. She has accepted him and loves him for who he is even if she knows the world may not accept him or give him a hard time for being different. One thing she can’t let go of while trying everyday to be there for her son is fear. It is a daily struggle to conquer the fear of what might happen to him. She fears for his future. She fears whether he will have a future like his peers.
“I ask myself, is he on the right path to independence? Is there a place for him in this world or will he be isolated? If he gets lost, can he find his way home? Will he ever be able to grasp knowledge easily, communicate freely and intelligently like kids his age someday?,” she wondered.
Oftentimes, as a mother to a special needs child, you catch yourself benchmarking your child’s development with kids his age but you quickly retrace your steps. You remind yourself that your child is only in competition with himself and no one else. His progress is measured by how well he was doing versus how much better he is doing now.
Omoze feels overwhelmed and constantly confronted with the feeling of bewilderment raising her son. She struggles to choke down heavy lumps in her throat, suppresses the tears already threatening to pour down her face and tells herself that all will be well. Everything will be okay.
According to her, it’s reassuring when your child looks in your direction and although you try really hard to mask your pain, they know, they see it and they reach out and give you a warm hug. The tears flow freely and you hold on to that hug for much longer so they don’t see your tears.
“Maybe someday, the fear will go away,” she assures herself. “Maybe someday, I will finally come to the point where I really know everything will be fine and I wouldn’t have to worry about my son.”
Feeling removed from the world around you
For Linda Orjiakor, the loneliness she feels raising her special needs daughter alone is overwhelming. It is not the kind of loneliness one feels when they are in the house alone while the kids are at school and you find yourself not knowing what to do with your time. That’s not it. “I am alone. I am really alone,” she tells Saturday Sun. “There is no partner to lean on. No partner to share the weight of this often exhausting journey. I don’t work outside the home because it’s impossible to keep a job when I have no spouse or family or a special needs daycare to rely on.”
What this means for Orjiakor is that she may not have to talk to another adult in a day or two, and that can leave her feeling removed from the world. And then when her long day is done and she goes to bed, she doesn’t have the comfort of hearing her partner even breathing in and out in that reassuring way that says “I’m right next to you.”
Instead, when she goes to bed, she hears the sound of her daughter who is either gagging or coughing or crying or having a seizure. And in that moment as she lays in bed alone with her child, she wonders if one day there will be someone who could want to share this grey noise with her.
Tales of isolation and loneliness
Funke Olayemi is a single mum to a nine-year-old daughter with dyspraxia and speech and language and processing. Her daughter attends a special school with children who have the same challenges as her in Lagos. She feels lonely. The reason she is so isolated is because she was in an abusive relationship with her Dad. She later picked the courage to leave as she didn’t want her little girl with a big heart to think that men should abuse you.
But her desire to give her daughter the best came with huge consequences. She lost her job and her daughter doesn’t love her as much as she loves her abusive dad. Her daughter looks at her with anger and this breaks her heart.
“All I ever wanted was to have a nice home with a nice job and a happy little girl,” she said. “Sometimes when you think you are doing things for the best it goes very wrong. Now I have to try and pick myself up and fight on.”
But she won’t give up on her daughter just yet. She refuses to be beaten in this fight for her daughter’s life and love. “One day, my girl and I will be fine. I will get a better job and most importantly, I will help her feel a sense of achievement and live a happy life.”
A single mum of two, Linda Ogbonnaya is not ashamed to confess she uses social media to connect to others whenever she feels overwhelmed with taking care of her 12-year-old autistic son. She admits feeling alone, lonely, and not getting much support from the people around her, so she resorts to building online friendships with mothers of special needs children to get some respite.
According to her, while social media is often annoying to some people, it is a real blessing for her. She gets the opportunity to chat with other parents like her. When she shares her stress with others, the experience brings a semblance of normality to the way she lives. These women she connects with on Facebook check on her, offer their shoulders when she needs, to vent and support her.
She said: “Sometimes, using social media is the only way I feel safe expressing my feelings and needs so I don’t run the risk that my hope for friendship and connection will be rejected face to face. But I need the face-to-face connection sometimes. I need friends to just visit and check on me and my son.”
Resilience in the face of challenges
According to Faith Ebo, raising a severely autistic child and one with Asperger makes for a terribly lonely experience as a single parent. It’s even harder as the severely autistic child gets older. He is 12 now. She lamented: “The loneliness is unbearable. How I wish my life was normal again and I have a partner to talk to. It is hard watching normal families doing normal things. I love my children but the loneliness is unbearable.”
Ebo feels that her life will always be like this and that she will always be alone. None of the men she has met and dated wants to help raise her severe autistic child. She has spent many years alone with her burden. She revealed that she could handle raising her son so much better if she had a partner who would bring some normalcy into her life and someone she would just talk to whenever she feels like screaming out in frustration.
Gloria Oyeneye is a single mother of a seven-year-old daughter who has spina bifida, a brain condition, epilepsy and bilateral hand contractures. Oyeneye is extremely lonely and has lost many friends. She also has quite a few family members or parents at her daughter’s school rolling their eyes or making negative comments with regard to her always cancelling plans, playing dates or not being able to make it to a birthday party.
She noted that as much as she has explained to everyone repeatedly that most times, she goes for physiotherapy, ultrasounds, and blood tests, they don’t understand what she’s talking about because their children don’t require such special attention.
“Most times, I get called to the school when my daughter is having a seizure,” she said. “I rarely sleep at night because every time my daughter makes a noise or moves, I jump up to check that she’s not having a seizure.”
Living with her special needs daughter is not easy for Oyeneye who was sent packing by her husband of seven years because of her daughter’s condition. He told her that it was her bad luck that made their daughter an imbecile and that such children have never been born in his family.
Oftentimes, Oyeneye and her daughter are absolutely exhausted. But for some reason, many people including family, friends and church members don’t understand the stress she goes through trying to make her daughter happy. They don’t encourage her as well and it makes her sad.
According to Oyeneye, “my family members and friends don’t visit the hospital when my daughter is there due to seizures or ever had someone give me a hug and say you are doing well and I see you both giving your all.”
She feels betrayed by people who pay lip service to being there for her when they are nowhere to be found when she truly needs them to support her and her daughter. “As much as people say they are here to support me, there really is no support. I really don’t think anyone will ever understand what it’s like to raise a sick child unless you are dealing with it yourself,” she said.