Empowerment Series Future of Children with Special Needs

SDGs: Children with Disabilities in Ghana, left behind

Akos (Not the real name) sells sachet water on the streets of Madina, a suburb of Accra, early in the morning, she will wake up to go earn a living for herself and her three children, one of whom has cerebral palsy

A section of participants at the Special Needs Parenting Summit

She lives in a single room rented apartment at Ashaley Botwe, a suburb of Accra, when she is leaving the house in the morning, she will lock up her seven years old son with cerebral palsy who looks like a one year old in physical stature

Sometimes she is away till evening, she needs to make some money to be able to buy him diapers and make porridge for him the next day, once he is still alive.

At the Special Needs Parenting Summit organized by the Special Mothers Project, an advocacy and awareness creation programme on cerebral palsy issues, Akos, shared her story with me.

She said: “My sister, I know it is not the best of life for my son but what should I do?, one time, I came home to meet my son in a pool of blood, he had a seizure and had bitten his tongue so hard, he was bleeding, he was snapping in and out of consciousness, I even thought it was the end of the road for him but he survived.” She said sighing in between narrating the story

Akos said she had attempted enrolling her child in school so that at least someone could take care of him while she goes to sell but every school she had ever approach rejects them.

“One of the schools even ask me why I wanted to enrol such a child in school, so I realized that school was not a choice for him, I used to carry him at my back while I go to sell but I had to answer 

too many questions from the society.

Some people even saw me and told me to go to the hospital and stay there with him, they do not understand the condition, and they usually think something evil has befallen us, people look on me with pity, others with shame, at a point, I made a decision to lock him up while I struggle to earn a living.

Akos said she does not feel guilty for doing that, she is doing her best, “Sometimes, I even think that he  is better off dead than alive, at least if he dies, he will rest from all the pain and suffering but for now, he is rejected by society and it is such a pain.

On accessing healthcare, Akos said, there has been a lot of back and forth, “we have gone to many hospitals, we have spent a lot of money on seeking healthcare, sometime ago, I borrowed money from everyone I know and just spent on health care.”

“We were required to do a lot of labs and scans and sometimes, it looks at as if nothing come out of it, apart from that, in a week, we are required to go for different kinds of therapies, I have to go to Korle Bu about four times in a week for some 30 to 45 minutes physiotherapy, Occupational therapy.

Akos said, as for speech therapy it is recently that they have started talking about it, “apart from the long queues, we waste the whole day at the hospital, I am unable to sell anything on days I go to the hospital so eventually, I made a decision that going to the hospital is a waste of time.

“I have resorted to using herbs and it has been helpful and more effective than the hospital”

Akos’s situation is not a unique one, it is a common situation or story shared among many parents especially mothers of children with cerebral palsy and other disabilities

It looks as if there is an unwritten law which says: “kill children born with disabilities in Ghana for we cannot care about them”

There are no social support systems and it seems society puts impediments in the way of a special needs mom just to make life a little more difficult for them

A communique issued at the end of the Special Needs Parenting Summit made some suggestions that government can implement to enhance the lives of families raising children with disabilities,

Among them is the need for government to make healthcare free for children with complex health needs at least for the first five years of their lives

The communique also urged government to ensure the effective implementation of the Inclusive Education policy, every government school should dedicate one classroom for children with Special Needs where people could be trained to take care of them while the parents work to earn some income

Parents raising children with disabilities should be able to access the District Assembly Common Fund for persons with disabilities to help with the high cost associated with nurturing a child with disability

In my opinion, implementing just the above mentioned suggestions in the communique will enhance the lives of families raising children with disabilities.

Sometimes, I feel that in the eyes of the public, they assume that everyone with a child who has special needs should be given hand outs,

The Sustainable Development Goals by the United Nations which Ghana proudly subscribes to, among others calls for an end to poverty in all forms, seeks to ensure healthy lives and promote the well-being for all at all ages and seek to ensure inclusive and equitable education and promote lifelong learning opportunities for all

In the light of these goals, children with disabilities in Ghana are really left far behind, even though countries including Ghana have pledged to leave no one behind

Establish a free healthcare policy for children with complex health needs – Special Needs Mom

 Ms Deborah Mangortey, Mother of a child with Down syndrome, has called on the government to establish a free health care policy for children with complex health needs for the first five years of their lives.

She said a free health care policy will ensure that such children get all the necessary assessments and therapy recommendations done and help the children get early intervention services

“Parents of children with complex health needs and disabilities are already burdened by the huge financial commitments that comes along with nurturing them, the system also puts stumbling blocks in the way of parents,” she said

Ms Mangortey made the call at the Special Needs Parenting Summit, a forum that brought together parents of children with Special Needs to dialogue on how they can make inputs into national policies.

She also advised parents to avail themselves for research purposes and share their stories publicly since that goes a long way to make systemic changes

“Be interested in research and data collection, share your stories and make yourselves visible,” Ms Mangortey said, adding that disability was part of life and there was the need for parents of children with disabilities to make themselves visible.

The Special Needs Parenting Summit aimed at amplifying the voice of parents of children with Special Needs in the formulation of policies to make life a bit easier for themselves.

Mrs Serwaa Quaynor, Mother of a man with Autism, Mrs Mary Kuffuor, Mother of a teenager with Autism, Mrs Justina Yiadom Boakye, Mother of a child with Osteogenesis Imperfecta, Mrs Lydia Bedwei, Mother of a woman with cerebral palsy and Madam Agnes Teiko Nyemi-Tei, Mother of a girl with Down Syndrome, shared their success stories and called for unity and collaboration among parents to enable them make the needed impact in policy decisions

Madam Alice Appiah, Chairperson of the Gender Committee of the Ghana Federation of Disability Organizations (GFD) guest Speaker for the occasion encouraged the mothers saying “some problems create opportunities for us”

She used the opportunity to educate parents of children with disabilities on the role of the GFD

Mrs Hannah Awadzi, Founder and Executive Director of the Special Mothers Project, said following the summit, a communique will be sent to the relevant Ministries, Departments and Agencies to inform their policy formulation on children with Special Needs.

The Special Mothers Project provides an online platform for parents of children with Special Needs to share ideas and experiences, network and engage in peer counselling

Special Needs Parenting 101

I am a believer in the saying that “You cannot pour from an empty cup” Parenting is a noble but difficult task. The task of nurturing a little human being to become a responsible adult is not a joke

You have the responsibility to guide the child’s behaviour which includes his/her emotions, character, self-esteem and a lot more

I think that majority of parents wants the best for their children so if you happen to nurture a child who is not the average or regular, if your child happens to be differently able, it comes along with emotions, emotions which most of the time happens to be negative

The “why me’s” the oh God why and the weeping and crying which usually happens because of how society responds or reacts to your child. Most of the time apart from just being a parent we are busily explaining to society why your child is different.

My first child happens to have cerebral palsy, I did not have time to brood over her the way I wanted to because before I could say jack I was pregnant with a second and felt totally helpless and scared.

What helped me overcome the sorrow and the emotions I believe was prayer, I prayed, I prayed, I prayed. I prayed like there was nothing else to do. It does not mean I did not cry, oh I cried, I cried and cried over the child I thought I will have

However, after the weeping came acceptance. I love my daughter to bits, I accepted her for who she is, I became her advocate, I teach her to be confident about herself every day and she has become so resilient, she has actually taught me to be even more resilient for her.

I take it one day at a time, If you ask me what I intend my daughter to become or where I see my daughter in five years, I don’t know and honestly I don’t know. I am not God, her future is totally in the hands of God, who knows tomorrow, I guess no one knows his or her future except God, the same applies to a child with Special needs or a person who is differently able, I do what I have to do, I put my best foot forward in terms of nurturing but after all the work is done, it is in the hands of God

I remember when I was toilet-training my daughter, (and I started toilet training immediately she could sit at age two) I used to feel so frustrated, she just would not use a potty, I cried, I threatened, I did whatever, she wasn't picking up, now to my amazement, my daughter crawls to her potty anytime she needs to wee-wee or to poopoo, once I notice her near the potty, I rush and lift her unto it and it’s a deal.

She can get down from the potty herself and if she poopoo she will go and pick the Toilet roll to alert me to wipe her bum, if anybody told me that she will get to this level of development when she was three or four years, I would have doubted, now she does and I can’t stop being proud of her, it is one day at a time

The last thing I want to say is practice self-love, if you keep weeping and mourning the child you thought you will have, you are not helping yourself and you will not help your child. Do what you like to do. The biggest mistake I would have committed was to have focused my whole life on  trying to get my daughter to be better.

I focus on  me getting better to be able to help her, I am pursuing higher education, I am improving all the skills I have and learning new skills, I have developed love for simple things, nature, I admire birds and trees and leaves and I grow plants and oh I smile and laugh a lot.

I crave for more self-love, peace and a happy family life and trust me my family is enjoying me and I am enjoying them, the focus is not to get my daughter healed, the focus is to give her a happy life, I belive that should be every parent's goal to make their children have a happy life. I am proud to be an advocate not just for her but for all children with cerebral palsy and in fact all children with special needs

My daughter has opened my eyes to the beautiful things of life which we usually ignore, I am a very positive person, I look at the positive side of everything, now I am even more positive, I assert myself better and I totally believe in myself, and my life is so full of laughter, much more laughter than tears.

Having a child with cerebral palsy or any special need to me is a privilege,  it was an opportunity to learn more about my capabilities, to develop new skills and above all to love, love and love