Tuesday, September 24, 2013

Malawi Special Needs Project








This summer I was given the opportunity of a lifetime-I was invited to Malawi to visit some friends doing missionary work at a place called Hope Village. Malawi is a country in Southeast Africa; it borders Mozambique, Zambia and Tanzania. 

 After seeing our friends' pictures and hearing stories about the families they met there and their hopes to help children in their village who have special needs, I was hooked- here I was complaining about how difficult it was to meet the needs of my children with challenges, while these kids literally had next to nothing.  One of the pictures they showed me was of a child using a plastic lawn chair with wheels attached to get around.   You can see that picture here .  

Thanks to credit cards with airline miles, and relatives with time share weeks, we made plans to come to Malawi.  Another friend that I had known from high school, and his wife joined us as well.   Determined to bring over as much as we could carry, I put a notice in my district's department newsletter asking for unneeded special needs supplies to bring to Malawi.  Thanks to a lot of caring people, we brought communication devices, Boardmaker software, PECS symbols, Velcro, flash cards, puzzles, books, stickers and a few toys, among other things.  We brought two suitcases full of supplies, and managed to squeeze a few more things in to our friends' luggage and carry-ons as well.


I also brought my iPad mini loaded with some AAC apps and specialized learning apps to try with the children.  Since I didn't want to mess with my Speak For Yourself app, I  programmed Speech Hero AAC with some words in Chichewa, so I could communicate with the locals more easily.  Speech Hero got the job done, although writing out the words phonetically so that the speech engine could voice them correctly was quite a task.  



Upon arriving to Hope Village, the first step for us women was to put on our chitenjes.  A chitenje  a colorful piece of fabric that is often worn as a wrap/skirt, and every woman must wear one to be modest.   Our friend Leanne lent us some chitenjes during our stay, and I picked one out at the local market to take home as well.  Although warned, one thing we were not truly prepared for was the weather. Or the mosquitoes for that matter.  Malawi's winters can get very hot, and its summers even hotter.  Well, at least where we were.  I am confident it hovered around 100 degrees during our Malawian winter stay.  The mosquitoes loved me.  Cross fingers, no malaria yet.


 


Life is not easy for most Malawians. Their day starts very early, before the sun comes up. The children are expected to help out at a very young age. Farming is a way of life for many.  Water must be carried a long way, in buckets on their heads. There are very few cars. Babies are worn on their mothers' or siblings' backs. Produce and materials all must be carried by foot, bicycle, or as we saw closer to the capital of Malawi- Lilongwe- ox-driven carts. 

Poverty is a very serious issue.  Many people are struggling just to survive. Many children wear rags for clothes- if they are lucky to have a school uniform, that may be their only outfit.  The monthly salary is about $30 a month, which with recent inflation, barely covers the cost of buying a month's worth of corn flour to feed a family.

While mud bricks just cost a few pennies each, many families save for years to be able to build a better home. We visited in the winter, when food was more plentiful, and did still see children with signs of starvation and malnutrition- swollen bellies and rotted teeth. In the coming months, as it gets hotter, life will become harder for many. A lot of families with children with special needs will not be thinking about how to help their children communicate. They will be trying to put food in their stomachs.
 

 


 
 
Our friends had asked us what we wanted to do while we were in Malawi; we were especially eager to see daily life in the village. We met many villagers and learned a lot about Malawian life. We went to the local market and had fresh grilled corn and the most delicious "french fries" with cabbage and tomato. We helped out at the medical clinic, learning how to administer malaria tests, and do data entry.

We visited Annie's Closet, a charity set up to clothe villagers who are in need of clothing or shoes. Our friend led a church youth group meeting. We also made an unusual visit to a witch doctor, and met "Spirit Dancers" from a neighboring village. We handed out stickers, bracelets and small toys to children in the villages.

We visited a neighboring village and checked in on a young friend who had a leg deformity.   He had had a homemade shoe brace fashioned to compensate for his shorter leg and turned in club foot.  This brace was allowing him to walk better.  

We were invited to the youth computer classes, where Eric led a class on using Microsoft Word and Excel. Many of the youth had never used a computer before. He showed them my iPad and explained that it was also a computer, but that all of its components were in one package, unlike the desktop computer with its monitor, CPU, keyboard and mouse. No one had operated an iPad before, but everyone was eager to try. The teens in the local church youth group enjoyed looking at pictures of our friend Tim's youth group in San Diego. The children in the village were equally intrigued by our phone cameras.  


While there is electricity available in Hope Village and in the main city an hour and a half away, electricity is a privilege that these young people did not have in their homes. I was glad I had brought some batteries for the communication devices and glad for the donated PECS books- no recharging!

We spent quite a bit of time setting up a communication book for one of the children in the village. This little boy, "J" is such a cuddle bug and always on the go. His parents report he had just spoken his first word soon before we visited.

J's method of communication has been pulling someone toward the item he wants.  I showed his parents how to use the PECS system, and also held a mini training with our missionary friends so that they would be able to support this family in helping him to communicate after we returned home. This is especially important as children with special needs here do not receive services of any kind. There is no ABA, no speech therapy, occupational therapy, music therapy, vision therapy or hippotherapy.  I remember at the beginning of our autism journey how scared I was about my son's future.  Going to support groups and listening to other parents' stories about their experience with autism was so important to me. There are no support groups specifically for autism available to J's parents.  I can imagine how lost they must feel and how nice it must have been to connect with someone who understood. Talking to them and realizing the things we had in common halfway around the world was important for me too.  Two updates on my favorite little one in Malawi who has stolen my heart: http://www.gillsinmalawi.com/apps/blog/show/32058841-little-joshua
http://www.gillsinmalawi.com/apps/blog/entries/show/35014720-joshua-s-class



I met "S", a little girl with Cerebral Palsy, several times and learned that there had been many recent positive changes for her. One of the changes was that she had started attending school in the morning, whereas previously she had to stay behind as she was too heavy to carry.  Now she was able to come in a wheelchair.  Our friends were thrilled to see her so much happier and being able to participate. To keep her entertained while she was waiting at the Medical Clinic, I showed her a game several of my students enjoy,   Big Bang Pictures by Inclusive Technology Ltd.  "S" had never played with an iPad before, but understood  this cause and effect game, laughing at each new animation she set into motion.  After seeing "S" be successful at activating an iPad mini, my hope is that more time will be set aside very soon to see if she has enough hand strength to control one of the donated communication devices.  We are hoping to track down a CD player too, as there were many wonderful music therapy CDs that would be perfect for "S" and her peers to learn from.  There is even a switch to hook up to the player so "S" can participate in turning on the music during circle time. 
 
Hope Village may have received some very important special needs items, but I think what I received was much more. Despite the lack of resources, Malawians have a lot of hope and a lot of heart. The people of Malawi certainly have my heart! (If it were not for the mosquitoes and very real threat of malaria, I might have sent for the kids and relocated!)


Do you want to help? Read more here


 



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