Friday, May 10, 2024

Don’t give up on your children – Psychologist advises Special Needs Parenting




  Dr Mabel Oti Boadi, a Clinical Psychologist and Lecturer at the University of Ghana, has advised parents of children with special needs not to give up on their children. 

“Your efforts will pay off," she said, expressing admiration for the special needs parents for their effort and hard work to keep their children going. 

Dr Oti Boadi gave the advice when she donated assorted items including rice, diapers, detergents, boxes of tin fish and tin tomatoes, clothing, shoes among other items to the Special Mothers Project, an advocacy and awareness creation programme on cerebral palsy issues. 

The donation was to celebrate her birthday. 

Dr Oti Boadi, accompanied by her husband, her mom, her friends and mentees, interacted with the parents, sharing words of encouragement with them. 

“I had a childhood friend who has cerebral palsy, she is now a lawyer, your efforts will pay off,” she said  

She said her interest in Special Needs peaked when she did her thesis in that area. 

 


“For the past eight years, I have used the occasion of my birthday to donate to the special needs community and today, I decided to share it with you, parents,” she said. 

Mrs Hannah Awadzi, Executive Director of the Special Mothers Project, who received the items, expressed gratitude for the gesture. 

Occasions like this make parents feel appreciated that at least someone is thinking about them, she said and added that the major aim of the Special Mothers Project is to advocate for policies that supports parents or families of children with cerebral palsy and other disabilities. 

“We want the government to put in place programmes and policies that support respite, caregiving, education and health to take the full burden of responsibility off the shoulders of parents” Mrs Awadzi said. 

She expressed her appreciation to all the special needs parents who came to grace the occasion. 

Friday, April 12, 2024

NPP will mainstream disability issues in their Manifesto – Committee

 


Mrs Ama Serwah Nerquaye-Tetteh, Gender, Children and Social Protection Coordinator of the NPP Manifesto committee, has said that the Party would mainstream disability issues in their manifesto. 

She said every sector of the economy would be encouraged to include disability issues to ensure inclusion become part and parcel of everything we do as a country. 

“Disability issues will be on the main menu and not be treated as a supplementary dish,” she said when the Gender, Children and Social Protection Committee of the NPP Manifesto committee met with the Manifesto Committee of the Ghana Federation of Disability Organisation (GFD) to discuss issues of importance to them. 


The Gender, Children and Social Protection Committee of the NPP Committee will prioritise social protection issues to facilitate the inclusion of persons with disabilities and children with disabilities in our development agenda. 

Mrs Nerquaye-Tetteh, who particularly highlighted the importance of the inclusion of children with disabilities in development, said equal opportunities should start right from the beginning to change the mindset of the populace about persons with disabilities. 

She applauded the GFD for the development of the Disability Manifesto to guide political parties to include disability issues in their manifestos. 

Mr Auberon Jeleel Odoom, Chairman of the GFD Manifesto Committee, urged the NPP Manifesto Committee to invest heavily in the implementation of Inclusive Education and explained that it would help regular children to become empathetic and supportive of children with disabilities. 

He said even though Ghana had approximately 2.4 million people with disabilities, the effective implementation of disability- inclusive policies and programmes remain inadequate. 

“Persons with disabilities continue to encounter significant barriers in accessing essential services such as education, healthcare, employment and social support,” Mr Odoom said, and urged political parties to pay attention and commit to the concerns and aspirations of persons with disabilities. 

Wednesday, February 14, 2024

Staff of Fidelity Bank interacts with Special Needs Mothers to celebrate Valentines day


Fidelity Bank,  Accra East Sector,  spent the morning of 14th February,  2024 Interacting with Mothers of children with disabilities 


The Mothers drawn from various disability groups shared their lived experiences with the staff of the Bank urging them to be involved in advocacy for support systems for them.


Mrs Hannah Awadzi,  Executive Director of the Special Mothers Project,  who chaired the event,  while commending the Bank for the initiative,  urged them to open their doors to learn about issues that affected children with disabilities. 



"Children with Disabilities are diverse,  there are children with Cerebral palsy, Autism, Down syndrome,  tourette syndrome among others who are all diverse and affected by similar but also unique issues,  she said.


Some of the Special Needs Mothers called on the bank and other corporate organisations to look into creating support systems for families. 


Support systems include having day care centres for children with disabilities as well as advocating for policies that will enhance the lives of families of children with disabilities.


Ms Lila Daisy Hagan, Branch Manager at the Ridge Towers branch of Fidelity Bank,  said as part of their Corporate Social Responsibility,  they wanted to pay attention to Mothers of children with disabilities since they are mostly neglected in the conversation around children with disabilities. 



The staff of Fidelity Bank served the Mothers a variety of dishes in addition to giving them parcels 


The Ghana Federation of Disability Organisations (GFD) that coordinated the event also expressed their appreciation to Fidelity Bank and called on other corporate organisations to emulate the gesture

Thursday, February 8, 2024

Introduce Measures to support families of persons with disabilities – Disability Manifesto

 



The Ghana Federation of Disability Organisations (GFD) has called on political parties to introduce measures to support families of persons with disabilities in their various manifestoes.

 

The GFD specifically called on political parties and policy makers to support those who act as informal carers, to support and empower them to manage their caring responsibilities, to remain active in employment, to maintain good health, and to have a life outside of caring.

 

Such measures, the GFD said, should also seek to prevent situations where family members with caring responsibilities are disadvantaged or discriminated against.

 

The Advocacy Committee of the Ghana Federation of Disability Organizations (GFD) has spearheaded the development of a Disability Manifesto for the 2024 elections.

 

Mr Auberon Jeleel Odoom, Chairman of the Manifesto Committee told the Special Mothers Project, an advocacy and Awareness creation programme on Cerebral Palsy issues  that the manifesto will serve as a roadmap to guide policymakers and political leaders in formulating inclusive policies and implementing effective measures to ensure the full participation and empowerment of persons with disabilities in all aspects of Ghanaian society.

 

The manifesto also advocates for the establishment of comprehensive social protection programmes that provide financial support, healthcare, and other essential services to persons with disabilities, families affected by disability, and caregivers of persons with disabilities.

 

Mr Odoom said over the years, political parties have often not involved organizations of persons with disabilities in the development of their manifestoes, which mostly resulted in limited consideration for disability issues in their manifestoes.

 

“With the 2024 elections approaching, political parties must give due attention to the concerns and aspirations of this marginalized segment of society.”

 

The GFD's Disability Manifesto represents a collective effort to address the challenges faced by persons with disabilities in Ghana and to chart a path toward greater inclusion and empowerment.

The Manifesto was arrived at through a nationwide process of consultation within the Ghana Federation of Disability Organizations and its members, as well as its regional branches.

The Manifesto represents a collective effort to address the challenges faced by persons with disabilities in Ghana and to chart a path toward greater inclusion and empowerment, Mr Odoom Said.


The Special Mothers Project is an advocacy and awareness creation programme on cerebral palsy issues and issues affecting families of children with cerebral palsy. Share your issues with us

Tuesday, January 2, 2024

My child must die before me

 Four months into marriage, Yaayaa (not the real name) realized she was pregnant, her joy knew no bounds as she had always wanted to experience being a mom.

Yaayaa worked in one of the prestigious banks in Ghana and she had her plan drawn out, how she was going to juggle being a mom and being a career woman.

She was also progressing steadily in her job which gave her a lot of satisfaction. Nine months came so quickly and soon it was time for baby to come.

Everything went as expected with the childbirth, it was a baby boy, but somehow the baby didn’t cry after birth. It looked like something was wrong, but the medics could not point out exactly what was wrong.

The baby was taken to the neonatal intensive care unit (NICU) of the hospital, while in NICU the baby even developed neonatal jaundice.

After about two weeks, Yaayaa and her baby were discharged from the hospital. In Yaayaa’s mind everything was alright.

Baby seemed to be growing well and it was all joy, soon it was time for Yaayaa to resume official work and she happily did, but her work was no longer going to be the same.

It was one challenge after the other, almost every week ended with her at the hospital with the baby, after a lot of hospital visits and not being sure what was particularly wrong with the child, doctors told her, her child may be having cerebral palsy.

Cerebral Palsy

Cerebral palsy is a neurological condition that affects the movement and sometimes the speech of a growing child. It is caused by an injury to a child developing brain, this injury could happen either during pregnancy, during childbirth or shortly after birth.

Cerebral palsy is the number cause of physical disability in childhood, and it has no cure.

Looking for Solution

Yaayaa did not know how to take the news of her child’s diagnosis, it was time to look for a solution, she told herself.

The months that followed her child’s diagnosis was uncertain or unstable, she found herself either consulting a herbalist, a pastor, a fetish or one medical doctor or another.

It also became a life of hopping from one pastor to another seeking solutions to her child’s challenge.

At work, Yaayaa was always full of excuses, she always came in with one excuse or the other her child was constantly sick, and she needed help.

After about four years into her child’s diagnosis, she decided to resign from her official work and concentrate fully on taking care of her son.

Her son was growing but there was no improvement in his condition, at age seven, Yaayaa’s son could still not sit, crawl, or do anything independently.

Yaayaa had been taking her child for physical therapy sessions as doctors recommended and yet there seemed to be no improvement at all.

Complicated Challenges

But that was not the end of Yaayaa’s problems, her husband also started developing some strange attitude, her once lovely husband will now stay so late at work, wasn’t supporting her at home at all and worse of all stopped providing for the home.

Before Yaayaa could understand what was happening to her husband, she got to know that her husband now had a mistress and had even had a child with his mistress.

Yaayaa became a single mother to her son with cerebral palsy because her husband eventually left her. She resorted to all kinds of jobs to make ends meet.

Maintaining her son who was growing in age but not growing in skills was very expensive. At age 14, her son was still using diapers since he couldn’t achieve toilet training. Yaayaa had to be there to feed her son, attend to his toilet needs, bathe him and do just anything thing for him. Her son could not achieve any independent living skills.

Sometimes, she would leave her son alone in the room and go and sell or go and wash peoples clothing to enable her to earn an income.

Yaayaa told the media that she did all kinds of jobs sometimes neglecting her son to be able to survive for one more day.

The Parents Support Group

When her son was 19 years old, someone introduced her to a parents support group, the Special Mothers Project. There she met other parents; they shared ideas and experiences as well as offered physical support to one another.

The Special Mothers Project apart from engaging in advocacy on issues affecting children with cerebral palsy and their families also connect parents with the limited but available support systems in Ghana.

It was during one of the regular discussions on their WhatsApp platform that Yaayaa shared her story with her 19-year-old son.

The other parents on the platform touched by her story decided to contribute money to support one of their own. The platform realized quite a substantial amount of money for Yaayaa and helped her set up a grocery shop to enable her to earn some steady income and have time to take care of her son.

A year went by and Yaayaa was doing so well with her shop, she reported back to the group.

Support Systems

She told the media that even though she is in a much better place and can support her son, there are no formalized support systems in Ghana to support persons like her or families of children with disabilities.

“There is no place, I can take my now 20-year-old son for recreation or even rehabilitation, I couldn’t even take him to a formal school because Public schools and facilities that take care of the needs of children and adults with cerebral palsy do not exist in Ghana.”

Yaayaa said “I am in a better place than I use to be, I am happier, my son is happier but there is one thing I wish and pray for:  My child must die before me.”

“If I die who will take care of my son, who? She asked, there are no facilities, there are no institutions with trained caregivers on how to manage a person with moderate to severe cerebral palsy in Ghana,” she said.

Usually, the burden of care is on the family especially the mother, sometimes even family members shun taking care of persons with moderate to severe cerebral palsy, that is why we need the government to put in place, programmes and policies that would facilitate the care of children with cerebral palsy outside of the nuclear family.

Yaayaa called on the government to pay attention especially to the needs of children or persons with cerebral palsy and their families in Ghana, since they have been excluded for so long.

PS: Even though it is a true story, the names and situation in this article have been changed to protect the identity of the people involved.

 

Thursday, December 28, 2023

Klicks Africa Foundation supports aged Special Needs Mom with GHS 100,000


 Klicks Africa Foundation, an organisation that supports teens and youth on the Autism Spectrum has donated GHS100,000 to Madam Mary Yawo Grunitzky, a 75-year-old Special needs mother.

Madam Mary Grunitzky, a widow and a single mother, has a 44-year-old son with cerebral palsy and has engaged in all kinds of jobs in addition to solely taking care of his son to be able to survive daily.

Mrs Mary Amoah Kuffuor, Founder and Executive Director of Klicks Africa Foundation who made the presentation to Madam Grunitzky said she was tagged on Facebook by the Special Mothers Project, an advocacy programme for families of children with cerebral palsy with Madam Grunitzky's story.



She said was touched by the plight of the aged woman knowing how difficult it is to nurture a child with disability and thus decided to raise funds to support the woman.

“The woman is old and needs support, she cannot do much to support herself,” she told the Special Mothers Project.

Mrs Kuffuor expressed her profound gratitude to her Facebook followers for believing in her and supporting her to support the aged special needs, Mom.

Madam Grunitzky who was visibly surprised by the donation, could only utter “God bless all who donated to me abundantly.”

Mr Agbeko Awadzi, co-founder of the Special Mothers Project, also expressing gratitude to the donors, said Madam Grunitzky reached out to the Special Mothers Project calling for help.

“The Special Mothers Project took to social media to share the story of Madam Grunitzky and the results has been positive.”

He expressed special thanks to Mrs Kuffuor for taking the issue up.


The Special Mothers Project is an advocacy and awareness creation programme on cerebral palsy issues and issues affecting families of children with disabilities.

 

Saturday, December 16, 2023

Special Mother Project Report 2023: SMP becomes a GFD affiliate

 


The Special Mothers Project, an advocacy and awareness creation programme on cerebral palsy issues and issues affecting families raising children with disabilities became an affiliate of the Ghana Federation of Disability Organisations (GFD) in the year 2023.

Being a member and an affiliate of the GFD gives us a bigger platform for our advocacy and to table our issues especially issues affecting Mothers of children with disabilities to a bigger audience.

The Ghana Federation of Disability Organisations (GFD) is an umbrella organisation to eight different disability group, and it gives us the opportunity to learn about the challenges of the other disability group and build our capacity in disability advocacy.

The Special Mothers Project therefore participated in the programmes and trainings of the GFD, some of our members participated in a training on Disability rights, the Convention of the Rights of Persons wit Disability and also the celebration and observance of this year’s International Disability Day celebrations.


Being a member of the GFD also opened a window of opportunity for the Special Mothers Project to feed into National policies being reviewed. Some of the policies include the Inclusive Education Policy, the Affirmative Action Bill and the Early Childhood Care and Development Policy (ECCD)

The Special Mothers Project has been a member of the Technical Committee reviewing Ghana’s Disability Law (Act 715).

Training

Some Members of the Special Mothers Project were recruited by the Centre for Learning and Childhood Disabilities (CLCD) to be part of a pilot project call the Peer Health Navigators Programme. Under the programmes the selected parents were trained to become peer health navigators for their colleague parents of children with disabilities



Some Members also benefitted from a training organised by Disability Awareness Teachers Support Service (DATSS) where parents some of whom own training facilities were trained on how to handle their children and what kinds of educational programmes they can have for their children.

Members also participated in a series of GFD training programmes.

Mrs Hannah Awadzi, Executive Director of the Special Mothers Project also trained some parents of children with disabilities at the Adentan Municipality. The training empowered the parents to become effective advocates for their children and to push for inclusion.



Some parents also participated in a training organised jointly by the Special Mothers Project and Psychotherapist Ms Colleen Chifamba on how to handle children with disabilities. That training also built the emotional capacities of parents.

The Special Mothers Project with the support of Dr Eunice Abbey gave a presentation of at the Disability in Education Conference organised by the University of Ghana, School of Education and Leadership.

The Presentation was titled: In the name of Ubuntu: The Special Mothers Project, Changing the lives of Mothers and their children  with Disabilities in Ghana

Donations

The WhatsApp platform of the Special Mothers Project organised a fund raiser led by Special Mother Ellen Berko, for the project at the beginning of the year. The funder raiser realized an amount of GHS2600 to support our advocacy work.

The Project also donated reusable diapers and reuseable sanitary pads to some parents and some students of the Madina Demonstration School. The Reusable diapers were donated to the Special Mothers Project by Noah Mapalo help Centre, a nonprofit voluntary organisation in the UK.

A number of philanthropists also donated some monies to support individual families of children with disabilities across the country. One of the beneficiary families received a brand-new deep freezer to enable her sell iced blocks, ice cream and water to support herself and her daughter



In all about six families in various parts of Ghana benefitted from seed monies to start a business (Micro enterprise)

The project supported some parents with monies to buy medication, food or diapers  

Media

The Special Mothers Project does advocacy mainly using the media, both mainstream media and social media. The project published a number of articles, shared many post of social media to create awareness on cerebral palsy and the situation of children with disabilities in Ghana in general.

The Special Mothers Project also featured in a documentary on Ghana Broadcasting Corporation titled: The Great Commission by Mrs Beatrice Senadju Boateng.

Partnership with the Rotary Club

The Special Mothers Project partnered with the Rotarian President of Accra-Teshie Nungua on a project dubbed: “Okamafo”



Under the Okamafo Project, the Rotary Club of Teshie Nungua and the Donor Community Forum of the Rotary Club is embarking on a fund raising drive in support of children with cerebral palsy and persons with mental health conditions.

The Special Mothers Project provided free consultancy for the project.

The Caregiver Institute

The Caregiver Institute is a programme by the Special Mothers Project started about three years ago to recruit and train young people interested in working as caregivers at the family level for children with disabilities.

We haven’t had much success with regards to this particular programme but we will continue to advocate for it .

Counselling

The Special Mothers Project provides counselling to parents of children with Cerebral palsy and also parents of children with other disabilities. Mrs Hannah Awadzi, a registered Psychologist Assistant with the Ghana Psychological Council discussed mostly with parents to the pathway for their children and how parents can empower themselves emotionally for the Special Needs Parenting Journey

Way Forward

In 2024, The Special Mothers Project will be recruiting new board members, some members on our board are moving on and they would be replaced with new board members.

We will continue to maintain our website www.specialmothers.org and our blog as well as intensify the media advocacy both in mainstream media and on social media

The Special Mothers Project will continue  with the advocacy on caregiver support and building other support systems that will help enhance the lives of families of children with disabilities

This will include providing caregiver training and connecting trained caregivers to families that need them.

The Project will continue to connect or link families to the available support systems and work with other organisations to create support systems for families raising children with disabilities in Ghana and beyond.

The Special Mothers Project will engage in policy dialogues and will be available to train organisations willing to do something for children with cerebral palsy and other disabilities.

The Project will continue to offer both paid counselling and pro-bono counselling services where necessary (Most of the counselling services we provide are pro-bono)

Now Accepting Donations

You may donate to the Special Mothers Project via the account name

Hannah Awadzi

Fidelity Bank

Adentan Branch

Account Number :2030026812954

Or on Momo number:  0244547980