After discussing the diagnosis and accomodations for dyslexia in our Dyslexia Demystified essay, we are shining the spotlight on three individuals living and thriving with the condition. You can find Joel’s story here, and Rajan’s here. This is Patience’s story.

Patience Ruth Nakibirige is a Ugandan currently pursuing her Masters Degree in Organiazational Leadership from Saint Mary’s University, Minnesota. She attained her Bachelor’s Degree in Business Economics from Nkozi University. She is a blogger over at https://www.adaezeblog.com/ and uses words as her largest form of self expression.

“When I was younger my prayer always was, ‘Lord, take away these pimples from my face and help me spell.’ Those two were my biggest problems. They were the cause of so much bullying and all my self esteem issues. It wasn’t until much later in life that I realised my problems with spelling were because of a condition known as dyslexia. It suddenly all made sense; the constant yelling from my parents and teachers, my tearful frustration at being unable to spell even my own name. I was not just stupid. There was a name to all I had struggled with.

My dyslexia is self-diagnosed. I began to actively seek information on the condition in my senior 5. It was my struggle with other mental health aspects (depression and bipolar disorder) that forced me to figure out what the cause was for all my issues. Once I found out I had dyslexia, after the initial relief, I began to wonder: ‘What next?’ Therapy had worked for some people but I did not have that privilege. I needed to find ways to deal.

My dyslexia manifests predominantly as issues with phonetic awareness and reading. Reading for me is really a memory exercise. If I have seen a word before, I store it in my memory with context (either the story I am reading, or the person in the book that said the word) and the next time I see it in a book or somewhere else, I can recall it. Reading new or unfamiliar words for me therefore, is a problem. I have to hear someone say it a couple of times then commit it to memory. Words in my head come with images. That is how they are stored. I expose myself to as many words as possible so that my bank is full so to speak. So that I can soak up as many words as I can. In primary school, my exposure to words was limited so if a text book did not have pictures processing that information was nearly impossible.

I have bottom-line parents. For them the point was always good grades. How you achieved them was really up to you. Once I realised dyslexia was what I had, I found ways to work around it. I found that for me visual learning worked best. All my school notes and summaries had doodles. Because I have a really good memory I also learnt more from people talking and explaining things so I would pay a lot of attention to teachers. I discovered the audio dictionary and for me that has helped a lot too. So if I find a world I am not familiar with I put it in and once I know how it’s pronounced I say it a couple of times and commit it to memory.

One of the things that has helped is how I see myself: I am perfectly fine. I refuse to see it as a hindrance or this negative thing about me. My family has had to accommodate me too! They used to complain a lot about my typos in texts. Now, we agree that as long as they can understand, we are good.

Another thing that has helped immensely is my friends and family. If you are dyslexic, surround yourself with people that know and understand your condition. These are your support system! I love mine for speaking and being life when I couldn’t find it. This one time in primary school, I came home beside myself with tears because some kid had said something mean to me. So I went to my elder brother Chris and said, ‘I’m so ugly, I’m so stupid.’ He lifted me up and said, ‘I don’t know why things are like they are now, but all of this will go away someday. And you will change the world.’ My best friend on campus, Melissa, would let me use her notes because half the time even I could not understand my own. She would help me study and fill in the places my dyslexia left me lacking because it was not a disorder you brought up or expected sympathy for.

You know what’s crazy? It never raised flags with my professors. I guess what helped is I was doing a course that dealt heavily in numbers, Business Economics, so I hid behind that. The thing is even numbers weren’t an obvious choice for me. But that is a story for another day!

When I moved to the United States for Masters though, all that changed. In my first class, I was able to talk about my struggle with processing information and it was so well received. I felt so much compassion; many people talked about helping me study if ever I needed it. Professors even talked about giving me extra time with assignments.

Honestly though, all in all, even with all the coping mechanisms I put in place, it was God that got me through that time. The opportunities for dyslexic people in school to thrive are so limited, even more so in Uganda. There were many times I was ready to call it quits, but I didn’t. And here we are.

Uganda isn’t where it should be when dealing with mental health and learning disabilities. There is still a lot of stigma. It is easier to say I am an addict or an alcoholic than I am depressed or dyslexic. We need to learn to be more compassionate; to give room for issues we do not understand. When people are faced with issues like this that we do not know how to solve we put them in a box, try our best to explain and rationalise them instead of allowing the issues to exist and finding ways to accommodate them. Dyslexia, with support from systems and people around you, is a manageable condition. As Ugandans we need to be those supportive systems and people.

My name is Patience Ruth Nakibirige. I want to change the world. I know with absolute certainty that I can.”

Read more about Patience’s journey here; https://www.adaezeblog.com/pacience/

Read more on dyslexia and what resources are available in Uganda for dyslexic people here: Dyslexia Demystified – Part 1 | An Essay by Esther Nshakira

Following our dyslexia demystified series, here is another story of someone thriving with the condition. Check out Dsylexia Demystified – Part 1 here and Joel’s story here.

Rajan David Daniels is a Canadian-Indian TV producer, currently living in Uganda. He grew up in India with his missionary parents and 11 years ago, moved to Uganda as a missionary too. He started his work as a producer after doing mission work with a team producing a radio show. He realized the expertise and professionalism of the team he was working with would do well commercially. He has since produced two seasons of Revved Up, a motoring show that shows on NTV. He is set to produce another show, Jangu Tulye, with DSTV on a channel yet to air.

“I was about eight years old when it became apparent that there was a problem. I was doing home school at the time and I was with a bunch of children making large strides in terms of progress and there I was, stuck. My mother sat me down and said my uncle was diagnosed with dyslexia and that was probably what I had. It was not until 17 however that I received a clinical diagnosis. I did a learning aptitude test in India that confirmed the diagnosis. By this time though, the school door had closed for me. At 16, I just decided I could not do it anymore. The entire process was torture. I was so happy to stop! In India we learnt using home-school curriculums but the arrangement was a mission school of sorts for all the children of the missionaries working together. I remember the torture of trying to copy down what the teacher would be writing on the white board. I used to write letter by letter, not word by word because half the time I didn’t know what was being spelled. So by the time the board was full and they began erasing to write again, I wouldn’t even be half way through. I couldn’t keep up. The teachers were particularly problematic honestly. I remember reading one of those Ladybird books with one of my teachers and I got stuck on this word, I think it was ‘they’. She said we are not going to move on until you say this word. I know you’re just being stubborn. And we spent almost an hour with me trying so hard to read this one word and I just couldn’t. School was painful.

I have always been in countries where school options for dyslexic people aren’t really present. In India the diagnosis process was smooth. But after that, no one answered the ‘what next’ question. There were no next steps. Knowing was huge though. I received validation. I realised, no, I’m not just stupid. My brother on the other hand was able to go to Canada where he just completed high school. He is dyslexic too but has been able to get ample help! They have examination and lesson provisions for children with dyslexia, so he has thrived.

My biggest issues have always been phonetics. Sounding words is always a trick because there are a lot of words that don’t sound like they are spelt. Consequently spelling becomes a big problem too. The thing about dyslexia is you don’t really outgrow it. I still have some trouble reading and writing! Legal documents for example, I just cannot get through them. I also tend to procrastinate when it comes to reading or writing tasks. If I have a big contract to go through, or a proposal I need to write I will put it off as long as I possibly can.

Of course technology helps a lot. I can do audios and podcasts as sources of information and there is always spell check. I also learn a lot from talking to people. I glean a lot of information from good conversation. I think if I had been given the necessary help, I would be slightly better off. I don’t think my life would have turned out much different because I love what I do, but I probably wouldn’t avoid proposals and contracts as much.

Ironically my reading habits got much better once I left school. I began to read out of curiosity and interest, not because I had to. I love stories! I actually got through the whole Lord of the Rings Trilogy. Whew! That was an uphill task. I skipped quite a few words, especially character’s names. Unfamiliar words I would recognize by the shape of the letters and using context, I would apply them. I would never actually read these words.

A dyslexia diagnosis is not the end of the world! In fact it can actually be a good thing. I read once that there are more successful dyslexic people than regular people. Dyslexia is really just another form of language processing. You can figure out how to work around it and make it work for you. I have a daughter, and honestly, I was never worried that it would be a problem. I knew that if she happened to have it we would be able to work through it. So far though she’s doing really well! She reads far better than I did at her age.”

Octavia Spencer. Whoopi Goldberg. Steve Jobs. Carol Moseley Braun. Kendrick Meek. Steven Spielberg. Patrick “McDreamy” Dempsey. Tom Cruise. If any of these names look familiar it is probably for the feats they have been able to achieve. No one would look at these names and think dyslexia. And yet it is the one thing that ties them together.

Following Part 1 of our dyslexia demystified series, I thought it important to not only highlight diagnosis and accommodation tips, but show that dyslexic people can be anything they want to be.  I chatted with three individuals all diagnosed with dyslexia, but living their absolute best life. These stories are meant to show that every dyslexic’s journey is different. The possibilities of destination however, are limitless.

Joel Kigozi is a trainer with Special Olympics Uganda. He works with children with learning disabilities including dyslexia, autism, Down Syndrome and cerebral palsy training them in all kinds of sports. He graduated from Kyambogo University with a degree in Social Work and Social Administration. He is passionate about making sure people across Uganda receive adequate information and assistance for their children with disabilities.

“I was first diagnosed by Dr. Njuki in 2005. I was at Seeta Boarding School then and the deputy headmaster read about Dr. Njuki and his work with dyslexia in the newspapers. With my school performance continuously deteriorating, he advised my mother to take me for the screening test and I was diagnosed with dyslexia. I enrolled in Dr. Njuki’s school, Centre for Lifelong Learning (CELL) for the rest of my primary education (Primary 7). I needed to be in a space where my condition was understood; CELL was that space. After sitting my Primary Leaving Exams, I was fortunate enough to be at a place where I could get back into regular school and I joined Lubiri Secondary School for my secondary. I went on to study Social Work and Social Administration at university which heavily influences the work I do today.

My biggest issue has always been spellings. Of course today with the leaps in technology I have been able to find my way around it. My dyslexia also presented as difficulty in expressing myself through writing. I would be confident with the concepts in my head but pronouncing words correctly and in turn writing out clear and concise thoughts was a little difficult.

For me what helped me a lot was self acceptance. I accepted the fact that there was a problem and I set out to find the best version of myself despite it. On campus I was able to get through because of really good friends. There was no accommodation for dyslexia but I have always been very honest about my condition and I have been blessed with helpful friends. I have shared notes and read and discussed information I would not have been able to otherwise process.

In Uganda our biggest problem is stigmatisation. Children with learning disabilities like dyslexia are so ostracised! It’s worrying. Here in Kampala it is an issue but in the rural areas even more so. We still have teachers that will try to ‘beat the stupidity’ out of these children. People are abandoning these children, associating the condition with witchcraft.

A lot of the times it is lack of awareness. People do not understand these disabilities. We need to find ways to make sure the information is reaching the grass roots; the grandmother, unable to read, raising a dyslexic grandson with no access to the internet, the parents raising their dyslexic daughter with no TV in their house. How can we make sure the information is reaching these people? If dyslexia is affecting 20 per cent of Uganda’s population, it must be only five per cent of that that are here in Kampala. How are the other 15 per cent receiving help?

Another thing to look at here are the teachers that are teaching in these schools. How many of them know what dyslexia is and can identify it in a child? Are they being equipped with this information before they go and start teaching? I attended a seminar last year organised by Build Tomorrow and half the speakers they brought to speak knew very little to nothing on intellectual disability education. And these were the people they were presenting as authorities.

Yet another problem is the fact that the centres and specialised schools are very few and are only accessible to the privileged. How do those that can not afford receive help?

As a country, we have a long way to go. My heart beats for these children, but sometimes it is easy to lose hope. Our governing bodies need to wake up and realise how vast the need is when it comes to the disabilities. We can help these children thrive. We just need to put in the work.”

Alphabet soup. Forgive the muzungu reference but for me, because I was heavily exposed to Disney as a child, my first understanding of dyslexia was alphabet soup. You see letters that, instead of forming words and sentences, are just swimming around the page. That was an incredibly elementary understanding, but because dyslexia was not something I encountered often it remained my main reference until I embarked on this project.

According to research from American National Institutes of Health and Yale University, dyslexia affects one in every five people which means about 20 per cent of the population. If those statistics are applied to Uganda the number of people affected could reach eight million. This alone necessitates the need for more information on the condition. Especially because there are many people who have convinced theselves that it does not exist.

If, like me, your understanding of dyslexia is very basic, read on. I had a chance to sit down and talk to a few experts within the dyslexia field here in Uganda. Here are some of my findings.

Definition and Symptoms

Dyslexia is a visual processing disorder; what is evident and what is perceived by the brain are different. In a normal brain, the right and left hemisphere are the same size. For someone that is dyslexic, the left hemisphere, the side that controls language and visual processing, is 10 per cent underdeveloped in comparison to the right. What is most affected when one has dyslexia is their spelling, their perception of letters, phonemic awareness, which involves the sounding of words and sometimes short term memory. Their long term memory though will present even better than most people. They will easily remember things presented to them visually, through photos or pictures, as opposed to conversation, dictation or just text. For some children, the brain will cause the letters to jump all over the page. For others, letters and numbers become inverted; instead of a 9 they see a P, or an m instead of a w.

Such inversions can be normal, a result of a child being a late bloomer. It is important to tell the difference. Context matters; if someone has just started school and is struggling with the words, that is to be expected, but if after a year of exposure they are still at the same basic level of understanding then there might be a problem. Another factor will be scale. Are they messing up just the m or the 9, or is it the m and the 9 and spellings and the reading? If they struggle over many different elements then it might be dyslexia.

Next would be to watch out for other dyslexia symptoms such as memory loss, trouble with shapes and even problems with space calculations and directionality resulting in clumsiness. Late bloomers will also often be late to bloom in other areas too, walking and talking for example. This is not the case for dyslexic children. They often achieve child-milestones at a normal or even fast pace, their only challenge being reading, spelling and writing.

Because dyslexic children are not intellectually disabled, they will come up with ways to avoid reading. They will be particularly distractive in class and find ways to get out of reading by endless conversation or questions, numerous toilet breaks or even fighting and aggression. These avoidance tactics can turn into serious behavioural and confidence issues if the condition is not identified and properly dealt with. Often, at extremes they can manifest into a life of crime and living outside the law. American statistics have shown that up to 70 per cent of inmates are dyslexic according to Dr. Eria Paul Njuki, the Director at Centre For Life-Long Learning (www.celluganda.com), a group of schools dedicated to children with dyslexia.

Currently there is no conclusive research as to what exactly causes dyslexia and consequently whether or not it is hereditary. For now though, it is assumed to be according to recorded cases of dyslexia within families. For many people in generation X (1965-1984) in Uganda, their parents and teachers attempted to beat these symptoms out of them. They were forced to cram, so they began to tie words to certain visual elements, either a tone of voice or a facial expression or even particular colours. This why it is not until recently, that dyslexia as a diagnosis became a reality in Uganda.

Diagnosis & Accommodations or management

For a country like Uganda that is under resourced, diagnosis outside a hospital setting is necessary. Here, the teacher or parent has read or been taught enough about dyslexia to identify the manifestations and take necessary measures. Identification will happen first; assessing whether or not the child has dyslexia. Dr. Njuki together with Florence Namaganda, a trained Physiotherapist with training and experience, in Disability and Neuro-Paediatrics chaired a team that came up with a screening tool. The tool is to be distributed to school teachers to help them identify dyslexia in students. Hopefully by 2019 it will be available at all schools.

Once dyslexia has been identified diagnosis is made; how severe is this case? If you diagnose a child with dyslexia early on and make the right accommodations, they have better prospects in life as they learn to cope with it early. For most of these processing disorders unfortunately, one does not outgrow them. Once accommodations are made however, their quality of life can even be higher than average.

Dyslexia occurs on a spectrum with different characteristics and accommodation for each child. One must understand that, in order to see what accommodation works best for a child. Some children might have a problem with copying from the blackboard to their notebooks, so they will need notes that are already typed out. Some find it hard to read against a really white background, as the letters jump around, so you might need to think about coloured papers.

Visual learning is one of the most powerful tools for dyslexic children. You can use pictures, photos and illustrations to amplify whatever you teach. Storytelling is also an excellent method of learning for dyslexic children. Someone that is animated while explaining a history point will remain in their memory much longer than someone that just recites notes. Visiting the places or things being taught about also helps them learn better. Heavy text will stunt their education and self development.

Another characteristic of dyslexic children is bad short-term memory. They will be the kind of children that forget to do their homework or forget to pack for swimming. For this, the trick would be to help them establish a routine. Ask them if they have homework when they return from school, try and make sure they do it at a set time everyday so it becomes routine. A visual time table with both school and home activities could also help in ensuring a routine is set. If swimming happens on Wednesday they can remember to pack their costume and towel. Label all their property and check every day to make sure they have it. Help them declutter their working memory so they can work better.

When choosing a school for a child with dyslexia, it is important to research and choose a school with specific support for dyslexia. (For those in Kampala, Hill Preparatory School, Center for Lifelong Learning and Special Children’s Trust would be good places to begin your research from.) Because there are not many schools that have the necessary support, a study buddy or a special teacher that sits with them in their classes and helps where needed might be neccessary. Sometimes, it might be necessary to separate dyslexic children from their classmates. It will depend on the severity of the disorder and what subject they seem to have more trouble in. They might be able to cope well in Maths for instance but might need different teaching techniques for Social Studies or English.

People with dyslexia are some the best writers, and it is all thanks to computers. Typing for dyslexic people will always come much easier than writing, so their talent is able to shine through. Ms. Namaganda has a dyslexic friend that writes some of the greatest proposals, but cannot spell. No-one ever needs to know however thanks to things like spell check! With the progression of technology in terms of laptops, notepads and other writing tools and with the rise of audio books, there is space for dyslexic people to excel even in the literary world, which is the most unlikely of places.

One of the biggest things I learnt, is that the Uganda National Examination Board actually has examination provisions for dyslexic children. The provisions are made for UNEB exams right from Primary 7 to Senior 6, with one experimental case at Kyambogo University last year. Dyslexic children are able to do oral exams and be recorded as per a circular sent out by UNEB in February 2018; https://ereg.uneb.ac.ug/files/CircularSNE1.pdf. The provisions made include table recording, audio-visual assistance and the use of transcribers. It is a God-send for the dyslexic community. Ms Namaganda mentioned a dyslexic child whom she tested once, with their mother present. She got one of the PLE papers and had the child sit and answer the questions. The child got almost all of them right, but was being given 20 per cent by his school because of a lack of understanding of his condition.

There is a need for public awareness of all of this information right from the grassroots through pre-natal care specifically. It is important for parents to be aware of how the condition manifests and the ways they can learn to manage and ensure that their child’s quality of life is not affected.

Dyslexia and Attention Deficit Hyper Active Disorder (ADHD)

ADHD presents as excessive stimulation seeking. The brain naturally seeks stimulation but for people with ADHD their senses are heightened. Their brains therefore need more and more and more stimulation. Dr. Njuki mentioned that dyslexia and ADHD are very rarely isolated, that they move hand in hand. When talking to Ms Olive Bugembe, a school teacher qualified specifically in educational psychology, she mentioned that the symptoms, especially behavioural can manifest in the exact same way causing people to constantly link the two. Children with ADHD will also present as very distractive in class, not attentive and regularly forgetful. However, it is possible for one to exist without the other. It is possible sometimes for someone to suffer from ADHD as a secondary disorder to the primary dyslexia. ADHD in this case becomes a comorbidity. Up to 40 per cent of dyslexic cases present with ADHD according to www.dyslexia-reading-well.com/dyslexia-and-adhd.html. To reach an ADHD diagnosis however, a proper psychiatrist must be consulted.

Places You Can get Help

First off, be wary of people that are masquerading as experts in these disorders but have not done the necessary research. The end goal is always to make money. Do research on your own and go seek help, equipped with knowledge. It will mean that you are less likely to be lied to.

You do not need to be formally qualified to work with dyslexic children. It is definitely a plus in terms of exposure and experience; you would know more than one who is not qualified, but given the current education set-up in Uganda and the need for people with knowledge on dyslexia we must equip ourselves with information. The most important thing is information which is very readily available on the internet. There are trainings one can attend; webinars and different websites dedicated to dyslexia. Some good places to start are https://www.understood.org/en and www.dys-add.com. The latter sometimes holds trainings in the US that run for 5-10 days. If keen, get in touch with Dr. Njuki and he can help you attend for free and only pay for your airfare and accomodation.

Dr. Njuki’s Diagnostic and Therapeutic practice in Kiwatule is an excellent space for diagnosis and rehabilitation.

Ms. Namaganda’s Special Children’s Trust runs schools and therapy programs for special needs children and would also serve as a great resource.

Centre for Lifelong Learning, a group of schools for children specifically with dyslexia, also directed by Dr. Njuki is recommended if one is looking for schooling options.

The Ministry of Education and Sports has a section for children with special needs if one is looking for specific education or sports accommodations and options.

Kyambogo University under the faculty of special needs and rehabilitation is excellent for anyone looking for theoretical knowledge on dyslexia.

Safe Spaces Uganda Foundation is also a good place for diagnostic and therapeutic support.

The Yale Center for Dyslexia and Creativity defines dyslexia as ‘an unexpected difficulty in reading in an individual who has the intelligence to be a much better reader.’ Empower dyslexic people. Remind them that they can. Whatever it is they set their minds to, they can.

Florence Namaganda is the CEO and Founder of Special Children’s Trust which is an umbrella for the Mukisa Foundation and Dawn Special Children’s Trust. The aim of Miss Namaganda’s initiatives is to empower and educate disabled children in Uganda. She is passionate about creating a generation of educated and empowered disabled people that the world can look up to see hope; remember that disability is not inability. The stigma faced by the parents and children here in Uganda with disabilities heavily inspires Florence’s work. ‘No child should be the root of such pain and shame and blame.’

 

Dr. Paul Njuki is the only certified dyslexia expert in Uganda having graduated from both California and Ohio with certificates in the subject. He also has a Bachelors and Masters Degree in Education from the University of Newcastle Upon Tyne – UK. He worked at Kyambogo University, Department for Special Needs and Rehabilitation from 1992 to 2017 when he resigned to dedicate himself to private work. Dr. Njuki is also a parent to a dyslexic child. It is what inspired his focus on dyslexia as a special need.

 

 

Olive Bugembe is a school teacher qualified specifically in educational psychology, after identifying the need for support from the grass roots especially when looking at learning disabilities. She has served as a school teacher, psychologist and counselor for almost 13 years, in schools in the UK and most recently at Hill Preparatory School, Kampala.

In Dyslexia Demystified Part 2, we shall be looking at some experiences of people living and thriving with dyslexia. Be sure to check the blog again soon!