One mother’s journey of raising a child with special needs
The birth of a child with a special need, or the discovery that a child has a special need, can have profound effects on any parent.
Cynthia Libale’s case is not an exception. Her world was turned upside down following a diagnosis for her first child Juanita Imani. She noticed her baby was not okay but she was in denial.
Eight months later, when she decided to take the bold move and see a doctor, Imani was diagnosed with Cerebral palsy.
Eight years later, she shares her journey with Nairobi News.
How old is your daughter and what condition does she have? And at what age did you have her?
Juanita Imani is 8 years old. She has a diagnosis of Moderate Cerebral palsy with seizures. I had her at the age of 23 years old.
You are known to flaunt your daughter a lot which is not majorly the case with parents raising children with special needs.
My baby is my world. I don’t look at her the same way other people do. Sometimes I even forget that she is “differently-abled”. We just live in our own little world where all I see is this perfect gift God gave to us and the world
How did you cope the moment it dawned on you that yours was a child with special needs? Who was by your side?
It took me a long time to even get to see what other people saw. My mum would ask me to send her photos of Imani and she would notice a lot and try to tell me, but I was just in denial. She would ask me about her milestones and she noticed that she had delayed milestones she would try to tell me but I did not want to hear it, and the saddest thing is I would take her to her clinic appointments and ask the nurses and they would tell me to give her time… that made me feel better.
But at some point when she got to 8months I noticed people staring at her anytime we would go to the clinics and public places. So I booked an appointment with her primary doctor then we were referred to Dr Oyatsi, a pediatric neurologist. We got an appointment with her biological dad and I took her for the appointment and that’s when we were told that she has Cerebral palsy.
I went into depression but I did not know back then, it took me a long time before I got to that place of acceptance.
I must say that as much as I was going through all these emotions the only thing that helped me cope and keep it together was the fact that I knew that my baby needs me. She needs me to be her advocate, her friend and her everything.
I had to keep hope alive for both of us. So I had to get it together one way or the other. And there are moments that I broke down and let it all out, which helped me so much.
What/who is your support system?
God. My husband, my babies, my parents, my siblings and friends. They have been so amazing and supportive to me and my baby.
Do you have any other kids apart from Imani? (If no, are you afraid of having more kids because of the experience with your daughter?) (If yes, older or younger and how do they cope and relate with their sister?)
Yes, I have other kids, four of them… not mine biologically but they are babies. We don’t have a baby with my husband yet, but we are planning to in two years or so God willing. Yes, I’m still traumatized from Imani’s experience but I won’t say that I am afraid, fear is not in my vocabulary.
My other babies are 18, 16, 15 and 14 years old. Three girls and one boy. They are so good with Imani, they love her so much. They know all her routines and always want to be involved in her care. They know how to change her, feed her, shower her just everything.
I always try to do everything for her but they always trying to take that load off my back and offer to help. I love them so much. They treat her like their own and are so protective when it comes to her, they don’t even like anyone starring her. And Imani loves them too.
Have women/parents with children with special reached out to you for advice on how to cope and do you have an initiative that brings together such parents?
Yes, I have had parents reaching out to me for advice. I try to help and do as much as I can. Currently, I don’t have and initiative of that sought but in the future, I hope to come up with something that will help parents with special needs babies have access to their medications at no cost.
Comes the question of discipline… How do you discipline a child with special needs?
Discipline is tricky when it comes to children with special needs. First of all, you have to know your child so well so you can distinguish moments that she is acting out and moments that she needs something, but the only way they can communicate is fussing and crying.
For me, time out and taking away of privileges work for us. I may take away the Tablet that she loves, or just not put on the shows that she loves on TV. And most importantly, I try to communicate to her with a change of voice and tone. When I’m mad at her, she knows because my facial expression and voice will let her know what’s up. And that is how she knows playtime is over.
What are some of the challenges you have faced as a parent bringing up Imani?
When I was in Kenya, Healthcare for these kids is so expensive! She had to go for physical therapy, occupational therapy, speech therapy, and her doctor’s appointments. She had to see a neurologist and ophthalmologist too. It was all out of pocket expenses because most insurance covers don’t cover for long term illnesses. So It was so crazy trying to catch up with all that and apart from that the house helps would be asking for more money. I remember I had to pay betwen Sh8,000 and Sh10,000 just for one kid. They would say she is a lot of work.
In terms of cyberbullying and also in real life… what are some of the obstacles you have faced because of your daughter?
I have never really experienced cyberbullying when it comes to her but in real life, I have heard and seen some very hurtful things said to me because of her.
I have heard relatives telling me that it is because of something I did, others have even invited me to go get special prayers from I don’t know who, and the most challenging one is dating with a child with a disability.
I remember when I called it quits with her biological dad, I had very close people telling me to just stay with him because no one would accept me with a child-like her. I once dated a man who knew that I had a child with a disability. I never hid my child or lied about her, but this person knew all along that I had my child.
Then this one time I got text messages of him telling his sister that apart from other factors he just can’t be with me because all the time it is something with my daughter. At that time, she was getting sick all the time, he said my daughter is a sickling.
But God is faithful because he blessed me with someone who adores my baby.
What are some of your highlight moments of bringing up Imani?
I will say I have learnt a lot, my daughter has enabled me to see a world I knew nothing about! I have learnt to appreciate the simple things we think is normal or we have a right to.
Parting shot to any parent(s) out there raising special needs kids.
I will tell them to keep their heads up, most of them live in denial and self-pity with so many questions that they will never find answers to. It is okay to be sad and have those days, but don’t stay there. It is a mad tough world and it will not stop to even give you space to breathe, it only gets harder as they grow older.
If you have people who want to help, accept all the help you can get, and if you don’t it is still okay. Do what you can for them. My prayer is that you choose to see the beauty and blessing in your babies, love them for them and create a little heaven for them and whoever wants to be in it with y’all.
Let us love and protect them, they only have us. Always remember that we are the chosen.