Thursday, April 16, 2015

Usonji Day

Earlier this month, we celebrated World Autism (usonji, in Kiswahili) Awareness Day here in Tanzania with a grand march in Moshi from the YWCA through the main streets of town, ending up at the Hindu Stadium for some speeches from the organizers and dances and sodas for the kids.

The day was put together through the efforts of several local and international NGOs, most notably Autism Connects Tanzania, the Gabriella Rehabilitation Center, Comprehensive Community-Based Rehabilitation in Tanzania, and Building a Caring Community.  Other local NGOs and schools participated including Pamoja Tunaweza Boys and Girls Club, Neema International and the Tuleeni Orphanage, the primary schools of Korongoni, Mwereni, Msandaka, Shauri Moyo, and Shirimatunda, all of which have special units for disabled students.  The Toa Nafasi Project was also involved, although much more marginally than I would have liked as neither Vumi nor I had really gotten our acts together to organize ourselves properly!

Fortunately, I was able to attend (wearing the Msaranga school uniform tee-shirt which luckily was the autism color, blue) although Vumi was not.  I went originally as a bystander with the Pamoja Tunaweza team, an outfit run by my good friend Shay Bell and others, but once we got there, I re-grouped myself with the Gabriella group since lo and behold, my four boarders were amongst the marchers!

Shamimu was the first Msaranga kid to board at Gabriella and she is flourishing beyond words!  Her academic skills have surpassed our hopes and she is definitely going to be able to rejoin her cohorts back in the village at some point soon.  That is, provided that her home situation is sorted out and we can keep tabs on her behavioral issues.

Nuru was the second to board and is definitely somewhere on the autism spectrum.  She too is thriving at Gabriella but will probably remain there until matriculation when we can figure out which vocational skill she will be best suited for as an adult.  Luckily, her baba is a great guy and will continue to be a supportive parent to her for whatever she needs.

My two boys at the Center, Danny and James, are also doing great though when Vumi and I visited a couple weeks back, Danny had been ill and taken to the hospital.  He looked a bit thin at the march but when he saw me, he gifted me with the biggest and brightest smile ever.  James remains a bit of a mystery to us all.  He is quite locked into himself emotionally, and it's hard to tell what's going on inside his head.  But he is definitely somewhat more extroverted than he was when I first met him.

Typically, Shimmy-Sham came and glued herself to me all day long and we roasted together in the hot sun watching the Gabriella folks drum and dance and listening to the speeches given by all the organizers and illustrious guests.  I had not bothered to bring my camera with me so I have no documentation of my own, but Shay has graciously allowed me to show these Pamoja Tunaweza pictures so you can get some idea of how it all went down.

Next year, I vow to do about a million times better than I did this time around!  World Autism Awareness Day happens annually on April 2nd and, to my knowledge, events were held all over the country (and, presumably, the world?) with marches in Arusha, Dar es Salaam, and Mwanza as well as Moshi.  In 2016, Toa Nafasi will represent for realz and this won't be such a piddly and belated blog post.  It truly was a beautiful day for a beautiful cause and I am only sorry that this piece couldn't do it justice!!

Autism is a general term used to describe a group of complex developmental brain disorders - autism spectrum disorders - caused by a combination of genes and environmental influences.  These disorders are characterized, in varying degrees, by communication difficulties, social and behavioral challenges, as well as repetitive behaviors.  It is estimated that 70 million people are affected by autism worldwide, making it an urgent public health priority that requires increasing global awareness, services, and research.

The goal of Autism Connects Tanzania is to provide support for families, current organizations, and schools in Tanzania and help educate about autism and intellectual disabilities, in order to protect children, youth, and young adults from harm, and to connect them with services that will help enhance their lives.

In developing countries, children with disabilities such as autism are often forgotten.  They are hidden away in their homes and denied access to school due to the lack of education about the causes of their disabilities, knowledge on how to best help them, and the myths that exist due to the disabilities these students face.  In countries where basic education is difficult to provide even for those without disabilities, the children that face the most challenges are often left behind and struggle to have a voice to fight for them.  Autism Connects Tanzania is working to help these children have a voice that can be heard by all, following these four tenets:

Education - By educating people about intellectual disabilities and autism, ACT will create a society eager to fight to protect and serve children impacted by these disabilities.

Empowerment - By providing resources and support on how to best help and support children with intellectual disabilities and autism, ACT will be able to encourage people to create more supports in their society.

Connections - By connecting those working with special needs children with each other and encouraging collaboration, ACT will create a diverse society of supporters and advocates working for change and help provide more children with services they desperately need.

Change - By creating a society in which children with intellectual disabilities and autism are supported, we will live in a country that ensures all people are able to live with dignity, quality of life and strive for a bright future.

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