Embrace Kulture 2017 Autism Awareness Event and Inclusive Rugby Tournament

Members of the Rugby Fraternity that took part in the Inclusive Rugby Tournament this past weekend.

This week we at Rugby 256, decided to share a different kind of story that is related to Rugby but not centered upon it. This past weekend, members of the Rugby fraternity went out to Entebbe to support Embrace Kulture as they raised awareness, about Autism. Seven teams participated in the first inclusive Rugby rugby tournament that was held at Entebbe S.S. 

In the spirit of Autism Awareness, we decided to share the inspiring stories of two amazing families that have children with autism who attended the event this weekend. One from the Embrace Kulture community and one from the Rugby Community. Most parents think they have to teach their children about this world but as it turns out, there is parents out there that have the special privilege to teach the world about their children. 
The first of these families, is one of a single mother; Antonnate Amooti Nyangoma, and her beautiful daughter, Druscilla Ainembabazi. During the Autism Awareness Event, Antonnate was kind enough to share with the people that attended the vent, the inspiring story of how Autism has been a blessing in disguise for her family. Well all who were not present, Antonnate was kind enough to let us share her story with you all. 

Antonette and her daughter Druscilla

Antonnate Amooti Nyangoma.

What does Embrace kulture mean to you? Embrace Kulture means a lot to me. It has come up as an organization that shows love and respect to people with Autism and Down syndrome.  

Tell us a little bit about your amazing child? My daughter is such a sweet, pretty and adorable princess. Her name is Druscilla Ainembabazi and she is 11 years old. Her second name means have mercy. She is a darling to me and I love her so much. She is a true blessing to me. There is a reason why God gave her to me.

How did you find out your daughter had autism? How did it impact you as a mother?During my pregnancy, I fell down off a motorcycle (Boda Boda), on my way from work one day. I went to the doctor after I fell and they noticed blood entering into the sack, around where my baby had put her head. Because of this, my daughter was born a premature baby at 6 months. By Gods mercy after incubating her for 2 months she made 2.5 kg at normal birth. My baby grew up pretty well in all stages but when she was 2 years old, I noticed she had not yet started talking and that is when I knew something wasn't right.I did all I was told as a mother, I got saved, I became a Moslem, I slept on mountains, I went to witchcraft but my daughter never talked. Whenever I looked at my baby, I just cried. Finally I decided to take her to Mulago hospital where I explained to the doctor my daughter's inability to talk. The doctor held her hand for 5 seconds and she said, "mtaa." The doctor encouraged me to be strong because I was crying uncontrollably. He referred me to a speech and language therapy ward. When I got there, I found a white doctor. The room was full of bright colors and my daughter got really excited. The doctor did a CT scan of her brain and then turned to read from a book. The doctor asked me, " Does your daughter tip toe?" and I said yes, "Does she cover her ears," he continued and I said yes. Everything the doctor read in the book my daughter was doing.

Later on that day, they told me my daughter had autism. Just like any concerned parent, I asked if there was medication and they said No! I was confused. I thought since they knew what the problem was, they would have found medication but nothing! They only encouraged me to pray, love, accept and understand her. They told me to go Google the word Autism and since then I got strong because of all I learnt.               

  

What does it mean to you to have a child with autism? As a mother having a child with autism has taught me a lot. It has taught me to love, accept and help others who don't understand Autism. Its a good and very rewarding experience.  

 

Druscilla shows off her beautiful smile.

What has been the biggest challenge raising a child with autism in Uganda? As a single mother I have faced a lot of challenges raising a child with autism. My first challenge was when I gave birth to her and realizing that my daughter doesn't talk, I had tell the father of my child. Surprisingly his response was that at their home, they don't give birth to such stupid things. I had to stand strong as a single mum for me and my child because I was not going to abandon my child. It wasn't her fault that she was born with a different ability and way to view this world. The second challenge would have to be school fees. As a single mum, it’s so challenging and here in Uganda, all special needs schools are very expensive. I tried to look for a sponsor but I failed, so her school helps me and I pay when I get anything. My third challenge and which I will never forget, is the day when I was insulted by my manager at work in April of 2016. I am a hotelier, but specialized I'm front office and customer care and I used to work in a hotel but left the job due of the insults I was getting at work.
I went to work as usual but I was sick, my neck was swollen and as front office, you have to smile, handle complaints and talk a lot. One of the managers saw me and some clients knew something had happened to me because they knew my smile at the front desk. When the manager asked, I told him I was sick and he immediately asked me to go home. I went to hospital and I was given medication. The doctor said the swelling of my neck was because I slept badly on the pillow.

Next say I was OK and had to report on duty. I loved working and being a single mum, I do not have much of a choice. While at my desk, one manager called me into his office. I was much better since I had not worked for 2 days so I knew I had not done anything wrong. On reaching in his office, he started shouting at me, then I asked what I had done, and he went on to ask me about payments from one of the apartments. Unfortunately these payments had been made while I had been out sick for 2 days. He continued to raise his voice at me while throwing numerous insults my way, and he went as far as saying, "You being with a disabled kid is none of our business!" I could handle insults made towards me but not towards my daughter. Why involve my innocent child? My story was written in news papers and the labor office came looking for me. When they asked me for my story I told it in tears. All I asked for was an apology in writing from the person who insulted me. I didn't sign up to have a disabled kid from God. However the manager refused, and to my surprise the labor office only advised me to quit or drop the case because the case was too complicated. That is when I took an indefinite leave from that job and never returned. But I am courageous and I have hope. So I will preach about Autism no matter what my come my way! 

What do you wish people knew about autism that they have misconceptions about now? To Love, Accept and Understand children with Autism. These kids are angels, they are blessings, they too are human beings. There is no reason to treat them differently.

How do you think the inclusive rugby tournament impacted the players and the fans that attended? My message touched many, and I saw some cry but I hope if they know anyone out there with a child that has autism, that they will encourage and support them.

Anything else you would like to share. In Uganda, most people don't know autism. Some think its witchcraft, others assume someone in the family delayed to talk or is a slow learner. But if we join hands, the few who understand autism and we preach the gospel, I believe we will help many who are being insulted, abused, and the kids kept in those beautiful homes. My daughter goes to Dorna Center Home for Autism. That school has helped me a lot and my baby has really improved. I really appreciate the work the director of the school Ms Dorothy Nambi is doing.

Antonnate shared this story on Sunday and moved a number of people that were present to tears. While she shared her story, one could not help but feel the deep and sincere love she has for her daughter. Every child deserves to be loved the way Antonnate loves her beautiful daughter. Antonnate continues to inspire a lot of parents to truly love their children and not take them for granted. 

  

Rose Tabitha Najjuka, Matthew Mark Musiitwa, Jesse Lawrence Nganda and Nathan Muwonge at the inclusive rugby tournament this weekend. 

The second family is one of two parents, and their amazing three children. Mark Kyagaba, a former member of the KOBS Rugby Club, nine years ago welcomed a son with his wife Dr. Prossy Nakanwagi. Mark and Prossy were more than happy to share with us the story for their son, Matthew.

Tell us a little bit about your amazing child? Matthew our my first born son with all his dad's names, Mark Musiitwa. He was born on 23rd May 2008 and will be making 9 yrs this May he was a beautiful baby with lots of energy just like his dad. He was and still is a joy to be around and is very talkative now thanks to early intervention. He is quite a happy boy. He is verbal not perfectly but within his means. He can ride a bicycle, can do some work on the computer and he is interested in photography lately among other things. We love singing and we intend to record a song soon because he loves to watch himself in video recordings.

How did you find out your son had autism and how did it impact you both as parents? The birth of our son brought us a lot of joy. He was the perfect baby any couple would hope for. When he was about 7 months his dad expressed concern that the baby didn't look him straight in the eye. However we didn't pursue the issue any further because Matthew seemed to b growing just like all the other children. It was the speech at about 1 year and a few months that really shocked us. Our matron's daughter started talking but Matthew didn't follow suite. We talked to friends who were doctors but most of them encouraged us to give the boy more time citing that we had too many expectations. However at 2 years, we decided to seek a professional opinion. We consulted Mark's mother Dr. Nakasi Grace who recommended different specialists. There we were told that he didn't have typical autism. But later we met a Kenyan OT who confirmed to us that our son had Autism. That was a defining moment for us as a family. I must say some relatives were not supportive and blamed especially his mum for raising him poorly citing it as the sole reason for his disorder. We thank God for the strength he gave us, for the friends and for one another. We have come a long way from therapist to therapist, from one school to another, from one diet to another, from one supplement to another. Any change in Matthew is largely due to Prossy. She has been so instrumental and is so well read about Autism. However all the early interventions and therapies come with lots cost for an average family in Uganda so Mark moved to the USA to cater for our sons future and entire family's well being. All in all we see Matthew as a symbol of God's love that he added to our family. Every child is a gift from God and as we know God blesses us in many different way. So we took the wholesome gift of a child into our open arms and showered him with lots of love and care.  

What has been the hugest challenge raising a child with autism in Uganda? The cost of schools and special needs tutors is huge for any average family and there not so many teachers or specialists to diagnose and help with early intervention which is key. Schools of adults are either not there or very expensive.

What do you wish parents with autistic children knew that they have misconceptions about now? To the parents with a child with autism, Acceptance is key to your own healing. Purpose to make your special ones happy. Find ways of connecting with your children. Study them and know how they communicate. Start therapy early and learn what the therapist can do and what you can do at home. Include whoever is willing to help you out. You may want to ignore the negative vibe. To those with young children if your intuition points to an abnormality then start early therapy even when the doctors doubt.   

How do you think this Autism Awareness event impacted the players and the fans that attended? It's good for sports to help build awareness of this kind to help parents interact and also prepare players who are yet to have families in terms of where to get support and guidance in case they find themselves in similar situations. Most players that I talked to said they were moved by Antonnate's speech.

What message do you hope the players and fans left with after listening to a real parent that has raised a child with autism in UG? It's a message of hope and love for our kids regardless of there condition and also help in knowing and sharing experiences.

Anything else you would love to share? There is hope. Seek out people to support you and most importantly, read, read and read about the Autism. Also we need it to be an annual event for the rugby fraternity to build even more awareness.

Matthew Mark Musiitwa had a chance to attend the Autism Awareness event and according to his parents, he had the time of his life. Mark and Prossy just like Antonnate, have to teach other people in the world about their children which is not always the easiest thing and why should they have to in the first place. This is where organisations like Embrace Kulture come in to help us all have conversations about Autism and speak out for children with Autism as well as support their parents. Embrace Kulture, is a charity organisation that has a simple mission which to create an inclusive world where all children are embraced for what makes them unique. Well we saw it fitting to talk to one of the founders of Embrace Kulture, Kathryn Condon who not only shared with us how the profound idea of Embrace Kulture came to be but also shared the path forward for this amazing organisation.

John William Wandicho and Kathryn Condon during an inclusive rugby.

How did you come up with the whole idea of Embrace Kulture?
Christa Preston and I came up with the idea of EmbraceKulture when we saw the need for education, advocacy, and awareness for children with disabilities in Uganda. We were educated in the same school as ALL children, and all were included in the schools. It was evident there were too many people (not all) separating children with disabilities, and at times abusing them. We figured the best way was to involve Ugandans (Hawa, Stephen, Peace and John), and let them lead the way, to social change.

Why children with autism and why inclusive rugby? Autism was particularly interesting to us, and myself, with a M.Ed with a specialization in Autism, and with a B.A. in Anthropology. It has been fascinating for me to study, observe, and live, the different cultural views of Autism across the world. In many places, the word, "Autism" is not known. Rugby is a sport where many of us have been able to gain a certain confidence and sense of belonging within a team. In rugby, all body types, sizes, speeds, and personalities are not only welcomed, but needed. We also believe in play as a way to educate and spread awareness, since it is usually fun for all. We can really appreciate everyone's differing talents in rugby.

What did you hope inclusive rugby would do for these children with autism? Last year, our event was more about spreading awareness and advocacy. We did a lot of work spreading awareness through our low-bandwidth learning platform (www.ekulture.org) This year, we wanted to let the people with disabilities not only be the stars of the show, but included in our rugby community. If we can start on the pitch, that can translate out into the real world. Giving them the empowerment, and ability to play a sport, opens so many doors for them in life, as well as for others.

Do you see this becoming an annual event? We definitely hope to make this at least annual. At this point, we have made a big event for the past two years in April. We hope to continue and grow each year. Throughout the year we have also had smaller Inclusion Rugby days at various schools across the country. We hope to not only continue this, but hopefully expand some larger inclusion days to other cities, such as Jinja.

What do you think this tournament’s impact was not only for the Rugby players but also for the fans that came to watch? I think it is really empowering for the kids, to be the stars of the show. I know a lot of times these children may not be expected to graduate from school, or play sports. This gave them the ability and platform to start to prove to others that they CAN. I hope for all the people that came to watch, their eyes, hearts, and minds were opened, or expanded, for the possibilities of differing abilities, and what people can do. It is important to look at each person, be it child or adult, through their abilities, and empower them to follow their dreams. The lesson here is that everyone has a place and purpose in this world, and the only way for complete success, is to lift other people up. My dad always told me, "Lighting another candle makes the whole world brighter. If we blow out another's candle, we are all left in darkness." I think this is what we see when we include people.

Anything else you would like to share? A HUGE thank you to the players, parents, caretakers, family members, teachers, the whole EmbraceKulture Team, Rugby256, all of the volunteer coaches, who are all role models for each other. I look forward to continue to work with everyone in the future!

And then there is the main man himself, John William Wandicho, who was behind the whole idea of  inclusive rugby tournament to raise awareness for Autism. As you hopefully read in the past articles, Wandicho chose to give back to the community by volunteering at Embrace Kulture. But most importantly he saw an opportunity with this platform he had which was rugby and used it to put smiles on these amazing children's faces. 

John William Wandicho

What did you hope inclusive rugby would do for these children with autism? Inclusive rugby spreads awareness so I hoped people would get to understand these children and how to deal with them which I think is lacking in our society. I also hoped the kids would gain self esteem but most importantly have so much fun.

Do you see this becoming an annual event? Yes I see this becoming an annual event. The players were very excited and the children too loved the experience.  

What do you think this tournament’s impact was not only for the Rugby Players but also for the fans that came to watch? I think they got more aware and open minded by interacting with these children, reading more about autism and the experiences shared on the day.   

Anything thing else you would like to share. First I would like to thank everyone that made this day possible especially the players for turning up and encourage more members of the general public to join us for future events so they can learn more.

Wandicho realized what a rewarding experience inclusive rugby was and he decided to share it with the other members of the Rugby fraternity. We caught up with some of the players who got a chance to captain various teams for this weekend's tournament and they had some amazing experiences to share about this weekend as well. 

Cox Muhigwa

Cox Muhigwa in awe of  how talented these kids are.

Why did you choose to captain a team for this tournament? It was a cause that I strongly believed was worth raising awareness about. It is also always good to try out leadership skills especially in sports where you take command and this actually worked well for me cause guess what? My won the Tournament!   

What do you think this tournament’s impact was not only on you but also your fellow rugby players as well as the fans that came to watch? It is a very good sign of togetherness to stand together and fight for a cause. Many players from different clubs invested their own money on fuel and food and more so time off (on a Sunday) to travel over 40 kilometers to play a charity tournament. Which other Sport in Uganda will you find that will do that? It felt so good and gave a very good image to the fans that turned up on how no matter the Players' statuses, they are still part of society and are concerned about any occurrences .  

Anything else you would like to share about the event? It was such an emotional day for me to have seen the kids with autism expressing their joy and happiness despite of them not being well understood . They danced, sang along to Irene Ntale songs and even confident enough to mingle with everyone around. Then there came a very touching story from one of the parents on how she did what every woman can do on this Earth to make sure her daughter was normal but all this was ignorance of the condition. She visited shrines, got saved, converted to Islam and bought 7 Qurans . She even quit her job because one of the Managers shouted at her, " We don't care even if you have a disabled child!" It was a very moving speech. Finally I would like to thank the players that agreed to play on my team for this event as well as Rugby 256 for choosing me to Captain their team for this tournament. It was a very rewarding experience.

Marvin Odongo

Marvin Odong aka Marvado

Why did you choose to captain a team for this tournament? I wanted to help raise awareness about autism among my peers and fellow rugby players. It seemed like such a worthy cause but most of all a great opportunity to give back that I could not let it slip by.

What do you think this tournament’s impact was not only on you but also your fellow rugby players as well as the fans that came to watch? I think the tournament had a great impact on all of us. It was interesting to learn a lot more about autism. There is a lot we can do to make this world a little better for another person.

Anything else you would like to share about the event? I think there should be many more rugby related charity tournaments to help raise awareness. I would also just like to thank all the players that played on my team this weekend. I really appreciate it and hope it was as rewarding an experience as it was for me.

Brian Odongo

Brian Odongo aka #captainfantastic

Why did you choose to captain a team for this tournament? It was an event that brought us together as a team for a greater purpose other than the game of rugby. I think it was really good as we broke our barriers as players and teams and rivals and came together for these incredible children!

What do you think this tournament’s impact was not only on you but also your fellow rugby players as well as the fans that came to watch? I feel like we as rugby players finally got out of our comfort zone and got down to the realities of life such as the fact that there are the silent minority in society that just need that our help. The glee on those children's faces as we played, danced and shared a meal with them was immeasurable! It helped us think out of the box and see beyond ourselves and care for people other than ourselves. It was a humbling experience and it's always a blessing to give back to society in one way or the other. It’s actually a mantle we should take on as a fraternity to do more often.

Anything else you would like to share about the event? For the fans, the turn up was amazing! It's humbling what people are willing to do not only for the game but also for the less fortunate. I thank all our fans for their unyielding support. Special shout out to the guys that played on my team this weekend, I am truly grateful.

The players posing for photos with the kids.

Gabriel Aredo

Why did you choose to captain a team for this tournament? The event created a lot of awareness in regards to the ABILITY that is autism, I have a cousin with the ABILITY and went to Shimoni where they had a dedicated section for those with the ABILITY to me it was reminder of why it is important to treat everyone with respect.

What do you think this tournament’s impact was not only on you but also your fellow rugby players as well as the fans that came to watch? For the other players and fans that turned up it was educational and showed the softer side of the Rugby player and fans mostly during the games where we included some of the children. We hope to have even bigger numbers next year.

Anything else you would like to share about the event? Thanks to my boys that played on my team. Finally whoever did not show up this year should come next year and have fun. It's a rewarding experience.

Joseph Aredo

Joseph Aredo and Collin Kimbowa

Why did you choose to captain a team for this tournament? I chose to captain a team because for long I have interacted with family members and people with Autism and disabilities and it was about time we shade some more light on this.

What do you think this tournament’s impact was not only on you but also your fellow rugby players as well as the fans that came to watch? This is the month of autism. Many people didn't know what it was and how they could help embrace those with Autism. During this event, many people players and fans got a chance to learn about autism!

Anything else you would like to share about the event? Thankful for the volunteers who took up this cause to educate us on Autism and people with disabilities, Mongers rugby club for hosting us and the players, especially the ones that played on my team, for showing up to support this cause but most especially ekulture for the work well done.

Andrew Olweny

Why did you choose to captain a team for this tournament? Captaining a team on the day was an opportunity to get a team together for an awareness event.

What do you think this tournament’s impact was not only on you but also your fellow rugby players as well as the fans that came to watch? The tournament was fun and created awareness about autism to fellow rugby players and fans.

Anything else you would like to share about the event? It was good seeing rugby players come together for a good cause. Also thanks to those that organised the event.                        

We at Rugby 256 would like to thank Antonette, Mark Kyagaba, Dr. Prossy Nakanwagi, Kate Condon, John William Wandicho, Cox Muhigwa, Marvin Odongo, Brian Odongo, Andrew Olweny, Gabriel Aredo and Joseph Aredo for sharing with us their experiences. Thanks to all the other rugby players and fans that went out to Entebbe to attend this Autism Awareness event and participate in the inclusive rugby tournament. Here are some photos from this past weekend.

These amazingly talented kids singing.

She had the best dance moves of the entire event. 

Marvin Odongo (Yes, that tall guy) dancing with the kids. 

John William Wandicho and Brian Odongo (L-R)

Players pose for a photo with the kids.

Players and the kids holding up signs about Autism Awareness.

James Ijongat (KOBS Rugby Club) and kids at the event sharing some fun moments.

Peter Sky Ochol and John William Wandicho standing up for children with autism.

Special shout out goes to Team Rugby 256 especially the team captain, Cox Muhigwa, for agreeing to represent Rugby 256 at the tournament this weekend. We really appreciate you taking time out of your weekend to help us support a cause that we are clearly very passionate about. Congratulations on winning the tournament. Most importantly, we hope it was as rewarding an experience as we thought it would be.

Team Rugby 256 with John William Wandicho, Brian Odongo. 

Special shout out to John William Wandicho for sharing with us the opportunity to participate in this noble cause. This has started what we hope will become a long and lasting relationship between Rugby 256 and Embrace Kulture. 

Last but not least, all children that come into this world are a blessing. Every child deserves to be loved unconditionally and children with autism are not an exception to this rule. Every child is a different flower, and all together they make this world such a beautiful garden. Dr Seuss once said, "Why fit in when you were born to stand out?" Lets continue to celebrate these children for what is unique in each of them so that they too can stand out.