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Pamela Titi Kakonge : Giving Hope To Special Needs Children

My deepest desire is to give every child a chance to reach their potential irrespective of their condition.Titi says of her decision to put her career on hold to start TUNAWEZA Children’s Centre. Titi is this unbelievably stunning woman with an enchanting smile and obviously a brilliant mind. She speaks with the eloquence of an advocate and the passion of a revolutionary. The bubbly wife and mother of two never thought she would end up founding a childrenÆs home but it was one of those happy accidents.
I come from a fairly large family by today’s standards (six children) and was brought up by the most attentive and caring parents. We were showered with a lot of love which some people would consider spoiling children but now I know that my parents knew what they were doing. Because I know how it feels to be really treasured I want every child especially those with special needs to feel loved, treasured unconditionally. I believe that the only disability in life is a bad attitude and the greatest gift you can give someone is friendship and understanding. I always feel like the richest, most favored, and blessed person in the world because of the great friendships I have made. I believe if I lived in a caravan, I would have a great party at every stop every night, everywhere in the world.
Before deciding to try at making children’s lives better, Titi who holds a Post Graduate Diploma in Legal Practice (Bar Course) from the Law Development Centre in Kampala-Uganda, and a Bachelor of Laws Degree from Makerere University in Kampala-Uganda was a successful consultant.
She has worked as lead and associate consultant on a number of Projects with great interest in communication/Advocacy assignments, Administration, Public relations & Marketing with Clients such Ministry of Health,- UVRI-IAVI & MRC , Ministry of Education & Sports- USAID Project on Girl Child Education Programmes, UNICEF, World Health Organization, Nile Basin Initiative, and The International Monetary Fund to mention but a few.
She was concerned by the realization that there were no facilities in the country providing basic training and care required by children with special needs. Driven by the need to raise social awareness about the potential which children with special needs have, once provided the required attention, she decided together with her friend Sheila Sabune to open up the first Early Childhood Intervention Centre of its kind in Kampala which is still the only one stop center in the region of East Africa.

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Titi stands before the center’s bulletin board

The Organisation
Tunaweza Children’s Center is a registered non-profit organization that provides children with special needs access to therapy, specialized education and day programs to support the specific needs of the children and their families. The Center follows a holistic approach to serving children with special needs. It believes in serving its beneficiary children and their families with professionalism, excellence, non-discrimination, integrity, and teamwork.
Our Vision is: Strive to empower children with special needs in the region to reach their full potential.
The Center’s Mission Statement is:To optimize the abilities of children with special needs by;
Providing an excellent Curriculum of Occupational, Physical and Speech therapy;
Sufficient Resources and Support needed to boost their development towards reaching their fullest potential.
And Providing Information, Training and Specialized help to their families and communities.
Our early intervention program aims at providing education, counseling and other support services to the children as well as parents of the affected children. Among the services provided include; Child assessment prior to therapy, physical, occupational, speech and language therapy, music and art therapy and special needs education, all given respectively according to the assessment results. The Center also advocates for these children through affiliate networks as well as providing family services that ensure continual progress even in their homes.
In providing her services, Tunaweza Children’s Center desires to improve, develop and expand its educational section in order to empower the clients who have left therapy levels (in order to prevent them from regressing), reach out to more children, as well as accommodate those children who would wish to benefit from our special needs class but prefer not to be mixed with the more incapacitated ones. The center also wishes to formulate a specific curriculum (based on each child’s needs) for the school since the Ministry of Education and Sports doesn’t have one. By doing so, we will be able to empower these children to reach their full potential. This will also help reduce stigma amongst parents and society as a whole. This is because even if these children are doing well, they still won’t be accepted in normal schools. However, due to limited resources, only a substantial number of children can be supported. The Center is thus doing its best to acquire more resources as it works towards a transformed society that can care, create opportunities and encourage independence in the lives of children living with special needs.

 

The Center

Located in Kiwatule Kampala, the Center has a Board of Directors made up of four (6) and 2 dedicated professionals who also serve as development partners. The Board helps in giving direction to management and ensures that Center activities are implemented as planned. The Center has full time Ugandan staff as well as a rotating staff of American volunteers that help to promote an environment of continual growth, cultural sensitivity, improvement and capacity building.
It is licensed by the Ministry of Education and Sports, Ministry of Health through Kampala Capital City Authority and Allied Medical& Dental Practitioners. Currently, apart from the licensing, the Center doesn’t have any specific partnerships with the above institutions. However, it directly works with various medical service providers including Mulago National Referral Hospital’s Psychiatric Ward to obtain referrals for rehabilitation and capacity development among others. Other stakeholders include schools and parents for whom we deliver services through our home-based program and fellowships.
The Center operates and provides services to mainly clients within Kampala district. However, we do receive a number of clients from outside Kampala as well as other regions who periodically come to the center for rehabilitation and assessments. We also recently welcomed a few clients from Somalia and Rwanda, which further boosts our zeal and vision of empowering children with special needs in the region to reach their full potential.
The center also has the therapy department headed by the Head of therapy and has got a total of 12 therapists  3 occupational therapists, 3 physiotherapists , 2 speech therapists and 3 special needs teachers. We also have a psychosocial support team of 2 and in total the center employs 24 persons.

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Titi shows us the center’s colourful playground

Social & Economic Impact
Children with special needs have been a widely neglected and underserved population in Uganda. The majority of children with special needs are not even given the opportunity to receive the services and intervention that they so desperately need. This opportunity is not only restricted due to monetary limitations, but the main reason is that services for such children are so scarce and essentially nonexistent throughout the country and the region.
Research indicates that to a large extent, parents/caretakers of children with special needs in Uganda and Africa at large consider it a burden to take care of such children. Many parents are stigmatized and would prefer that their families or friends or even the neighborhood in which they stay not to know that they have such children. They consider it a curse and if the children are lucky enough to be brought to special clinics and or schools like Tunaweza Children’s Center, some of their parents do not want to be identified as real parents, but mere caretakers or guardians. Some parents/caretakers think that such children will never grow up to become children of responsibility, hence end up abandoning them in institutions that take care of them. Some think it is wastage of money, which they could use to bring up other normal children. The girls are even more disadvantaged than the boys; very rarely will parents bring them to special needs clinics or schools unless it’s the only child they have. That is why the majority of the enrolled children are boys, whom some parents believe are currently the only heirs they may have in old age. It is also important to note that clinics and schools for children with special needs are very scarce or even nonexistent in the country and the region at large.
In her effort to support the children with special needs, Tunaweza Children’s Center put together resources, both human and equipment, to establish a one-stop center proving all therapy treatments as well as specialized education (with the realization that these children could not match the pace and style of teaching they were exposed to in the ordinary schools and daycares they went to) to enable families in the nearby communities access affordable services for the proper development of their children.

Sustainability
The community and beneficiaries including other stakeholders like the government have been involved right from the planning stage, pre-implementation assessment as well as monitoring and evaluation of project activities so far. Their involvement is intended to ensure ownership and inclusion of the above identified areas of intervention into their long term plans and budgets to ensure continuity in the provision and delivery of friendly services to children with special needs. Community involvement involves giving advice and agreeing on measures to run the project set up for their children, day-to-day implementation, monitoring and evaluation of their children’s developmental needs.
The beneficiary parents/caretakers are undergoing capacity building and counseling sessions from which skills and knowledge are being imparted to be in position to provide practical activities to their children and how to monitor and evaluate their developmental progress. They are also in position to support each other whenever faced with such circumstances of special development needs. This will help strengthen community ability to be self-reliant in supporting children with special needs and other areas of life. The training should also help them better evaluate the services offered by the center. Alongside therapy and education provided, the Center also conducts frequent research into the causes of child developmental disorders, and this information will keep the community and beneficiaries informed on the pre and post-procedures needed to prevent and improve conditions of children with special needs.
The Center has also been encouraging beneficiary parents/caretakers to form community mechanisms that can be empowered to lobby and set up saving schemes as well as income generating activities to support the financial and nutritional needs of their children with special needs.

The center’s playground