The Birth of Mukisa home and Dawn Special Child Care Centre

The move that Florence made back to Uganda was not without complaints mainly from her family. These thought that she was not being reasonable enough to come to a place where she had no job yet leaving behind numerous opportunities and a better life. But as luck would have it, she met 2 German ladies who were therapists and on sharing her dream with them, they were excited since it was similar to what they had in mind. This therefore saw the birth of Mukisa Foundation. This foundation had no where to be found because it was simply still a brain baby. It was not a fairy tale story for them as they tried to find a place to call home for it and this was a long search. On getting their first house which was in Kamwokya, all went well until the land lord inquired about what they would be using the house for. They happily shared their dream with him because they believed that since he was a parent, he would be intrigued. This was however not the case because as the land lord listened to the reason as to why they needed the house, he quickly handed them an envelope which contained all the money that they had paid for rent. The land lord said that there was no way he would allow them to use his house as these ‘mongos’ that they were to put in the house would be a bad influence to his children who would be just next door.

Ms.Namaganda says that at the time, it was so heartbreaking but now when she looks back, she says that it was a great blessing. They had to come out with a new plan and that was to start visiting homes with disabled children.

1Starting with just 8 families in various locations, she visited these in a time-tabled manner. Ms.Namaganda taught the parents or guardians that their children were not bewitched, nor were the parents being punished for some wrong things that they had probably done but rather had medical problems.  This she did by showing them pictures of Caucasian children who had similar deformities, pictures of how the deformities may occur; you may call it a way in which the deformities may come into the child’s life.  She also went on to teach them how to take care for the children, how to withstand unfriendly behavior towards their children, how to support themselves, and she says this worked out so well. This was not without the hardships she faced with coordinating various homes in locations that were so far from each other. But as all this was going on, they had not given up on the search for a place to house their foundation. This was got in Lungujja on Kalema road in March 2005, and they moved in April that year.

This centre came with a vision to empower parents to become self reliant. This was done by teaching them how to make crafts, giving them the ability to start small businesses to take care of their families and the disabled children’s needs. The first members of this centre were the 8 families that Ms.Namaganda had been dealing with. The centre then went from these 8 to 10 then 20 families. By the time they were holding their Christmas party, they had over 100 families. This then necessitated another physiotherapist apart from Florence for the centre and much more funds which were got from friends and families.

The centre encouraged the parents to interact and share their experiences and this was therapy on its own. These stories shared were not happy stories, say, a taxi driver or conductor refusing to take a parent with a disabled child, the passengers walking out of a taxi because it contains parents with disabled children, but they brought strength to the parents knowing that they were not the only ones in this and that their children could also be loved despite their deformities. This in turn gave these three proprietors a reason to go on despite the fact that it was really overwhelming.

As time passed by, there were parents who started coming in with the hope that they could be able to leave their children at the foundation centre. These were turned down, though sadly done, because it was not the goal of the centre. These were parents that did not need to learn how to make crafts, sell tomatoes and the like so as to make a living, they were career parents.

The three brains behind the Mukisa Foundation then saw the need to create a place to cater for such parents. This therefore saw the birth of Dawn Special Children’s Centre which is found in Bukoto on Lutaaya drive. Many things changed due to the birth of this new centre, for example, time tabling the days that one was at a particular centre, looking for more therapists and many more people needed to care, teach and stay with these children throughout the day. Opening its doors at 7am and closing its doors at 6pm, Dawn Special Children’s Centre is a home away from home as well as a school for these children. It also came as a heaven sent place for the parents who do not have anyone to stay with the parents given the fact that the maids, even the best can not handle all the needs of these children.

Many services are offered at this centre like therapies of different kinds, special needs education. So we can comfortably say that the centre can cater for children who can not learn at the normal pace, for example, those that can not write with ease, and those that need to learn sign language. The centre also helps those children who may look normal but can not get the classroom materials real fast, for example, those that have dyslexia. These are helped through the formation of book clubs that empower these children with the ability to take a letter for what it is thus not mixing them up.

The centre also takes care of children who need one-off therapies just for assessment for one condition or another and this is done on appointment.

There are also a lot of extra-curricular activities that are done in this centre, for example, football, guess you are wondering how its done but its an effort that these children are taught to put in for every new day.

The centre is family of loving people working together for and with the children because this is the only way the children’s needs are met sufficiently. These include physiotherapists, occupational therapists, speech and language therapists, special needs teachers and children care takers. This sees them get bathed, fed, rested, taught and above all loved. So it means that there is a day care centre for the special needs children too.

Despite the fact that one of Ms.Namaganda’s friends is back in German for good, the centers are still running and Florence says that this has taught her that everything, however good, comes to an end as this also has helped her became more courageous to face each day.

 

 

A lady with a big heart for the special needs children

As I made an appointment with someone I had no idea would even agree to it, I already felt welcome because on the other side was a warm and welcoming voice streaming through the phone. There and then I knew that the interview would be pleasant. As you enter Dawn Special Children’s Centre, you have no idea whether there are any children because it is so silent. However, despite the silence, it is a great environment for the children that I later get to see. The staff is so welcoming and when I get to meet the lady I am to actually talk to, my earlier assumptions are confirmed. She goes on to tell me that Dawn Special Children’s Centre is a place that deals with children with disabilities. This encompasses children with both mental and physical disabilities.

Ms. Namaganda Florence, one of the directors of this place actually did study from Mulago Hospital to become a physiotherapist though she is now practicing neuro-physiotherapy.

2She says that her first encounter with a disabled child was on her first day at Mulago as a student of physiotherapy. It was a shocking experience mainly for a girl of her age then and it was also a very strange sight. She wondered where so many people (children) with rare conditions had come from. Her interest pushed her to keep going to the physiotherapy centre that was just a stone throw from her class. She kept on going to this centre to get to know why there were so many children there, what caused their ailments and so much more.

The therapists at the centre sent her to the children’s parents where she received harrowing stories about what the parents and their children go through in the family; extended, neighborhood, the abuse that the parents received from their spouses, taxis so this was making it hard for the children to ever be out of the houses except when they were coming to hospital. Some even thought that their children were bewitched or that the children were a form of punishment for what they had done earlier on in life. On asking the parents where they resided, some said they were from Kampala, others Kamwokya and she was still wondering why she had never seen them given the fact that she actually stayed in Kamwokya.

There was also the problem of therapist hours being limited because the therapist would come in as late as 10 am and only stay up to 2 pm. This made these parents who were mainly mothers to keep coming back to the hospital for maybe 1 year without getting any help. Florence says that this discovery hurt her to the core because some of these children were a bit old therefore not easy to carry around, not forgetting the fact that taxi people were not always willing to let them into their taxis. This sparked something off in her head; she believed that she had to do something for these children in future. This seemed to be working out because all she studied was in line with this. After her course, she left for the UK where she believed she would be able to amass a lot of money so that after her retirement she would fulfill her dream.

On reaching there, it was just the exact opposite from what she had seen back home. It was moving from a place where there are barely any services for the disabled to a place where there was everything right from transport, schools, and therapists for these children. However, even then, the parents here did not pass on without complaints about having such children. They kept complaining about the fact that their lives had been taken up by what they had to do for the disabled children, say, taking them from one therapist to another, waiting up for them as they underwent some classes, measuring for shoe sizes since there were also those with growth disorders and so much more.

Ms.Namaganda says that despite the fact that she thought she would work in England and amass wealth that she would be able to use when she got back home after retirement, she got so bored. This was because she could only get a chance to work on only 3 children per day then write notes for the remainder of the day. This was brought about by the fact that there were very many therapists for all the ailments faced by these disabled children. Florence says that she used this time as a time to learn all she could about dealing with such children. In 2005 the fact that she was less productive in England saw her back to Uganda to fulfill her dream and make sure that she did not deprive her country of yet another much needed therapist.

Hydrocephalus-Esther’s journey 3

On getting home, the watch still continued for they believed that they would see some significant change. However, this was not to happen for about 3 months later, Esther would start crying again due to discomfort. Indeed, the short fall of the operation had occurred. The drilled hole was not widening as anticipated yet she was growing and the flow of the liquid was also increasing. So the shunt was her only option. They had to make the journey to Mbale again however this time the excess fluid was not yellowish meaning that no infection had cropped up. This also meant that no operation was required to drain it out. The operation to put a shunt was slated for the day after their arrival at midday and by 4 pm all was done. This time, some change was seen for she could once again breastfeed and smile.

On getting back home, they thought that the reduction in head size and the like would be seen in a fortnight seeing that they had been told that Esther would be fine in a short while. However, they only started seeing the change after 3 months. Then she could turn her head but not her lower body because the head was still heavy for her to manage easily. Coping took time and Mr. Mayanja says that this was the time when their patience was tested for Esther had to be trained on how to deal with weight of the head.

4Therefore what a 2 year old could do such as walking did not come easy for Esther for she had not yet learned how to balance or walk. She also feared to try walking for she knew that any attempt would culminate in a fall. With a gigantic smile and lots of enthusiasm, Mr. Mayanja says that Esther found a way to deal with her inability. He says that she developed a coping mechanism of picking her play items using her legs then get them to her hands.

She stayed at home for sometime before joining a special children’s centre; Dawn Special Children’s care centre as she neared 3 yrs. In a year, tremendous improvement was registered as she begun sitting on her own, counting up to 50, say the alphabet, sing rhymes, construct sentences in English, and even hold arguments with her big brothers of 8 and 6. Sam was advised by the proprietor of the center, Ms. Namaganda to take learning one step at a time and with that they have been able to teach her more even at home. Her self esteem also got a boost for she learned to ask for what she needed. Mr. Mayanja says with a smile that it is never bed time for Esther if her brothers are still up doing homework; she also does her own homework which only gets done when her brothers’ is finished.

She has got a special seat that she uses whenever she wants to do something seeing that she does most of her things such as washing dishes while seated. She is a very active girl with a beautiful smile.

2The time that Esther begun crawling was such a memorable time and Sam’s eyes light up as he recounts the moment. At Dawn Special Children’s care centre, she was however given a frame to help her master balancing and strengthen her legs. In as much as she enjoys standing in it now, her 1st experience was not good because she lacked the confidence to stand without falling. To help her stay in that frame, she was given other activities to do while in it to take her attention off standing. “It is a continuous and costly process”, he says. But he is quick to add that the cost can not beat the services that his beautiful daughter is getting for her life has been shaped by them.

At first, she experienced a lot of loneliness because the maid could not be with her all the time and her movement was curtailed, but at the centre, she has company all the time. Her major problem now is the cold for it brings on severe flu and fever. The flu disturbs her so much when she sneezes yet there is a shunt in her body. They make sure that she is warm at all times to beat the cold.

People had got a number of assumptions as to what causes Hydrocephalus, for example among babies that get it at 3 months of pregnancy; some say that the pills to beat nausea and vomiting play a part in it. However, how far true that is can only be said by the medical practitioners.

Hydrocephalus-Esther’s journey 2

Now that she was out of the 1st stage, the next step was going for an operation. They were given a number of options such as having it done at Mulago hospital’s private wing, at Kadic for 2.2 m or at CURE Hospital in Mbale. The last option which was given to them by a friend of Esther’s dad was what they settled for.
3Esther left Mulago on Friday and on Monday she was on her way to Mbale in the company of her mum, dad and his wife’s sister-in-law. Whenever they hit a pot hole, Esther cried out in pain but they had thought of carrying a blanket for her support and a shock absorber seeing that the head was now 3 times the normal size. She was very uncomfortable for she could not turn her head nor could the neck support the head. Since the head was of an abnormal size and heavy, the ladies in the car had to take turns carrying her. It was such a long grueling journey for all of them.

On reaching Mbale, they needed to secure an appointment and this was easy since Sam worked in Mbale so he asked friends to help him with that. It was also not difficult to get a date for the operation since the excess fluids had already been dealt with. Dealing with the fluid before travelling to Mbale was also good for Esther as she did not have to endure the pain that the pressure from the fluids caused. However, the financial side had really been dented by those days in Mulago. But weighing the 2 issues, Mr. Mayanja says that the former outweighs the latter because it was all for the good of his baby.

In as much as some may call it small, it shook them when they were told that as a rule, the parents’ blood had to be tested before the baby was operated on. This they discovered was a precautionary measure by the hospital in case a hiccup occurred during or after the operation. It would put the guess work out of the picture in case the parents have HIV, sickle cells or any other related condition. The pressure was on since they had to wait over a day to get their results.

2Although they were already financially constrained, the expenses were still coming in form of accommodation, feeding and the like. Esther and one care taker were receiving meals and accommodation courtesy of the hospital so Mr. Mayanja had to cater for his wife’s sister-in-law in those areas. Lucky for him, there was a guest house nearby so he booked her in and he was sure that she was safe to go in and out the hospital. Then he looked for a place for himself as well.

The charge incurred was 1.5 million and this was a one off charge for it also catered for the patient after the operation in areas such as follow up, failed operation and the like. Sam says that compared to what they had to be given, the charge was little. However, their financial situation was saying otherwise since one problem led to the next and all needed money.

The operation was for Tuesday. The hospital applied 2 methods during such operations; use of a shunt and ETV with ETV being their preferred method. This is because the hole drilled for fluid passage grows as the child grows. However, it has a set back of the child not responding to the operation. Esther had the ETV method used during the operation was monitored for 3 days to see how she responds and if any complications arise.

As soon as the operation was done, Mr. Mayanja and his wife’s sister-in-law returned to Kampala for they were not needed anymore. Sam would later come back to pick Esther and his wife.

Hydrocephalus- Esther’s journey 1

I met Esther at Dawns special children’s care centre and I was blown away, her smile was infectious and her love to learn was unrivaled. However, I knew little about this girl and I yearned to know what her journey had been like. I then got a chance to get linked up with her dad, Mr. Mayanja Sam who told me the pain and joys of having Esther in their lives. At birth, Esther was a normal baby, however, events begun changing in January of 2007 when she was only 3 months. The worst in her life had begun. On this morning, all seemed okay and the mum headed to work leaving her with the maid who loved her to bits. On returning and getting Esther ready for her birth, the mum noticed that she was uncomfortable and that the head seemed swollen but because of the long hair, it passed as mild. So the mother brushed it off as a bump from a fall as she played and the maid was afraid to bring it up. However, Esther started to cry to no end and it was then that she rushed her to her granny who was a retired midwife because Esther’s dad was not yet home. The granny examined her and advised them to seek more help which they got from a Abii Clinic. Here the doctors shyly asked if Esther’s dad had a big head but the reply was no. This was because Esther’s head was now looking unusually big and they concluded that something was amiss. They were given some medicine and advised to go to Mulago hospital the next day. That night, Esther’s cries were uncontrollable for the pain she felt was intense.

3On reaching Mulago the next morning, Esther was admitted straight away for it was found out that there was excess fluid in her head and it was pressing on the brain causing a lot of pain. On hearing the news, Esther’s dad was in shock wondering what was going on since he was far off. When describing the pain, Mr. Mayanja says it was like that of a pus infested wound. They were admitted for 10 days as tests were being carried out and the excess fluid removed. Her skull had to be drilled so that a temporary shunt would be inserted in the head to help suck the fluid out. The shunt was also removed upon discharge. During this time, the doctors are extremely careful lest they suck out all the fluid leading to another brain complication. When there is a lot of fluid in one’s head, the person suffers from convulsions and Esther got these constantly in her left leg. Due to the intense pain, Esther could barely breastfeed.

The most expensive thing was tests for most of them had to be carried out in private laboratories out of the hospital. The tests were done after every 2 days and the fluid was also taken for examining. Sam says that every time something new was being looked into, it meant higher charges for them. They also had to go for x-ray examinations at a private imaging center and when you add to that transport and extra comfort for Esther, the costs were going through the roof.

They were later on discharged after the excess fluid had been sucked out. However, the size of the head had not reduced and the pain which was still intense for this 3 months old baby and her parents. This was simply the start of Esther’s journey as well as for the parents.

So I longed to see another day

Today it is child number 3 going through Moryn’s hands of love. She was brought into Nazareth Children’s home at the age of 5 by a probation officer and police. They told the authorities at the home that this child had gotten lost so she’d been kept by them at the children’s department for 2 days hoping that someone would come and claim her. However, no one did so they decided to bring her to the home.  This girl could not talk or hear and she seemed to have mental challenges.

As the days at the home wore on, a few weeks, she was given a name, Emmanuella, since no one knew her name. It was in these weeks at the home that Moryn got a chance to interact with her and also noticed that Emmanuella had some mental issues for at 5 years, she never said a word but murmured to herself all day. In addition to that, she had not learned any toilet manners therefore diapers were in order. She always seemed to be in her own little world barely noticing the people around her. The cherry on top of this already not good cake was that she experienced rather nasty seizures on a daily basis.

morynEmmanuella was taken to the main hospital in Masaka and the diagnosis revealed that she had epilepsy and due to neglect from her form caretakers, this condition had worsened hence affecting her body and brain abilities. So the doctor told them that apart from medicine to cub the seizures and epilepsy on a whole, there was nothing much to be done.

This report was very discouraging but Moryn refused to resign herself to the doctor’s word and do nothing. This is because, deep within her, she believes that with a special needs child, one can only say there is nothing I can do after all the available support and resources have been exhausted. It is with that renewed energy that Moryn embarked on a journey to do all she could in order to improve Emma’s life. What gave Moryn more hope was the fact that there was now a way to control the seizures and she had not lost her ability to walk.

However, because Emma was experiencing mental challenges, she had to be taught everything, such as how to eat food, where to find her bed and the like. Moryn and the other caretakers at the home then decided on a plan regarding how to help Emma gain what she should have already learned naturally at that age. This plan was to be implemented for the next 2 years. With patience, Emma was taught how to pick food from a plate and put it into her mouth seeing that whenever she was given food, she threw it on the ground where she would then start picking it from to eat. She needed constant reminding as well regarding where her bed was since most times she ended up in other people’s beds. She also needed to learn how to drink and actually swallow as this seemed foreign to her. Then there was the issue of sensitizing the rest of the children about her so that they would include her in their daily activities such as playing as a way to keep her engaged.

In 2011, Moryn and the authorities at the home thought it wise to enroll Emma in a special needs school because having her in the home the whole day was taxing yet also the other children needed their attention. It was also thought that help from more qualified people would do her good. She was enrolled into the school and there is no day they regret that decision because the improvements in her life are evident. For example, she can now do simple chores like help put dishes up in a rack, she has learned how to use the potty as long as it is put the same place and she can also afford to give a smile lately.

moryn1

The journey unlike the first children such as Bridget and Nakato is still far from over but Moryn says that improvements such as not throwing food on the ground can be seen. However, she still has challenges taking some drinks, she can not play with other children but she will gladly sit and watch them play. The journey has been quite difficult; there are times when they grow weary when the milestones take longer to be achieved and because the future is uncertain. However, Moryn and the rest of the caretaking crew still soldier on as any guardian would.

Emma is now 10 years and it has taken her all these 10 years to learn the things she knows now and it will probably take her more years to learn a few other new things. However, Moryn says that they have hope and faith in God, and she knows that with the love and patience given, Emma will get better.

Give that slow learning child a chance

1There are very many children that have been called cursed or simply stupid just because they are slow as far as classroom affairs are concerned. You know, however much you try to compare this slow learning child to a normal child, you will never get there. This child is not an underachiever because he/she is performing under their grade level. So how about accepting the fact that this child is a slow learner thus needs help? It will be a great start to making this child’s future better. So what really causes a child to be a “slow learner” — one who just does not learn as fast as other children in the classroom?  Well, there are many hereditary, environmental, and physical factors that contribute to one’s intellect, and it is difficult to isolate the particular influences. For many children who have difficulty in school, we will never know precisely why their ability to learn is limited.

But that’s no reason for a parent to give up on a child. This child may end up being a great person in future. Heard of the saying, “disability in not inability”? Yes, it works for this child too.

There are many things a parent can do for or with that child so as to make him/her feel loved and a better person as well as improve his/her abilities.

  • The first and most critical thing I learnt as I talked to a psychologist is that the parent needs to be very patient with this child. This is simply because the child is slow and it will cause frustration to the parent.  So all that this parent needs to do is managing his/her emotions so as to avoid anger out-bursts and help the child learn instead of feeling like he/she is a burden in the home.
  • The parent(s) also needs to have empathy and open to listening to the child at all times. This child also needs to be checked on regularly so as to assess the progress made. This in turn determines what the parent needs to do to help the child.  A parent needs to pause whatever he/she is doing with the child and check on his/her individual progress lest the child will make no progress and a lot of time will be wasted with no fruits.

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  • The psychologist goes on to say that checking one’s pace is another important aspect that the parent needs to do. Considering the fact that the parent is a fast learning person without anomalies, his/her pace of doing things may be too fast for the child to catch up with. Therefore, the parent needs to stop and see which pace he/she can adopt so as to be of use to the child.
  • Counseling skills are highly needed for the parent for then he/she can be able to know what to do at a particular time when dealing with the child. It is very wise of the parent to take a short counseling course as this would do him/her good in learning how to handle the child.
  • The parent also needs to be in line with what the child uses to study. This therefore calls for the parent to have the study materials that this child needs, learn how to use them and sometimes it may necessitate the parent to read the study material so as to be abreast with what the child is studying. That way, when any question from the child comes up, the parent is able to answer efficiently. This also helps the parent to support the child through study time instead of just taking on a supervisory role.
  • The parent(s) needs to work closely with teachers so that they do not feel over-burdened. Once the teacher feels that parents of this child do not care about his/her academic progress, he/she will also give up with the common statement, “I will carry on with those who are with me” thus the child lags behind. However, if the parent(s) cares, the teacher will also have the initiative to cultivate more time for this child so as to help him/her get better in the academics field. This therefore builds a supportive network for the child and a constant reminder to the child that he/she is greatly cared for, as well as the teacher that the parent cares about the child’s well-being.
  • However, sometimes the books may fail terribly. This does not mean that the parent throws in the towel; it only calls for creativity. The parent needs to look critically at the child’s daily activities so as to assess what he/she enjoys doing thus nurture that talent. That way, the parent will have helped this child become a better and constructive person despite being unable to perform as expected in class.

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It is also crucial to know that despite the fact that the whole responsibility of raising a slow learning child can be tedious, maximum open-mindedness on the side of the parent can be a great remedy. This way, the parent, he says, will be able to deal with whatever new thing as far as this child is concerned arises. The parent will also be able to appreciate the small improvements that occur in the child’s life.