Another Great School Today!
Just when we were really beginning to get bogged down in adjustment to new culture issues, and day to day life details seemingly slamming us one after another, today we followed a little lead that turned out to be wonderful. It is Chiwiledi Community School, run by.....you guessed it....the Catholic Church, again! It is small, under 20 kids, but every single one of them has an intellectual disability! WOW. It was bright, cheery, upbeat, and, true to what we had seen and heard before we came, had very little resources. It actually has a 'bus' which is unheard of for ...
Training for our First Classroom!
Today was a winner of a day, all around. I went to Kasisi Orphanage today with Samuel to train two workers on exactly what to do with the children who have intellectual disabilities. I went with educational activities, and after securing a classroom, went to get two of the children, and proceeded to show the workers what the children need in all areas of development (albeit on a VERY basic level), communication, cognitive tasks, and gross and fine motor skills. It was a productive few hours. Then they fed Samuel and I lunch, and we forged our way home in ...
One Amazing Classroom
There is a classroom here in Lusaka which is amazing in many ways. First of which, is that there are 9 children and young adults who are nonverbal and have autism. (In comparison, in the US, you would have only 5 students of this severity in one classroom, and each of these students would have one adult working dedicated to their individual educational needs. Then there would be one head teacher, so 5-6 adults total.) Second, the teachers aren’t special education trained, and there are only two of them for all 9 students. Third, the teachers are paid under $100 ...
How We Operate: Partnerships
In addition to our own initiatives, Special Hope Network strives to encourage, support, and train existing programs for kids with intellectual disabilities here in Southern Africa. Thus far, it has been our privilege to develop partnerships with approximately 15 local schools, churches, community centers and orphanages to provide kids with services, medical care, education and love. We are trying to change the world, and we are glad we don’t have to do it all by ourselves- so partnerships with other organizations, etc are vital to the work we want to see accomplished. Right now, we are in the process of establishing formal ...
One of the hardest things…
definitely has to be the feeling of helplessness with the vast amount of need and the limited resources we are finding here. We went today to one of the 10 special education schools we were told about by numerous people as one of the best resources in Lusaka, a place where many children with intellectual disabilities have their schooling and therapy needs met. If that is true, we didn't see it. It was incredibly deflating to have this place built up in our heads, as a place where others are learning to work with children who have intellectual disability, and ...
The Continuum of Care
Second Post in The Continuum of Care Series 1. Birth- Developing Relationships and Training of Doctors/Medical Professionals Regarding Earlier Diagnosis and Parental Communication. The continuum begins by focusing us on what we consider to be the primary determinant of the wellbeing and quality of life for an individual with Intellectual Disabilities, that is, the attitude of the parents and family. For the past 27 years and on three continents we have invariably found that it is not the nature of the disability, the educational interventions available, the accessibility of quality healthcare, or the economic circumstances that are most influential in shaping a ...
Today, Teaching on Expressive Language
Today we had our second Special Needs Class on how to teach children who have intellectual disabilities, which met at our home. We were pleasantly surprised at the amount of folks who came to learn. We had 8 come to our first class, and we had 13 today. I quizzed them on what they learned from the first class and then we moved on to Expressive Language, or how we let folks around us know what we want and need, through speech, sign, gestures, body language, or a combination of a few of those. It was tricky to share enough ...
One more eye fixed!
Gabriel's left eye had three things fixed yesterday, including, cataract removed, glaucoma (pressure) reduced, and a lens put on. He was very unhappy at the temporary pain, and spent a good bit of the rest of the day screaming, but today, he was much calmer, and if the results of this eye are anything like the results of the other eye, he should be overall much more content. It seems the high pressure behind his eye must have been causing pain, because he used to cry a lot. Now he is happier, and is making some talking-type sounds, and is ...
Special Education 101 began today
I'm not sure what my professors from college would think of my 'class' today, but hopefully they'd realize their teaching was doubling and tripling onto a new continent. A good investment of time and energy 20 years ago is reaping benefit today for a whole new set of children. We set up outside under a tree in the shade, since it has been extremely hot, with no rain, and the sun has been relentless. We prepared for about 10, since we'd invited, had invitations excitedly received, but not confirmed due to illness/transport issues, between 8-15 people. At the time we ...
Setting Up Our First Classroom
Tomorrow morning, we are going to Kasisi Orphanage, northeast of Lusaka to set up our first classroom for children who have intellectual disabilities. This is the loving place run by catholic nuns I told you about in an earlier post. It is bright, clean, loving, cheery, and a wonderful place to be if your family can't care for you. I was there on Friday, in their baby room, and they have a 3 week old, a 1 month old, two babies between 1 month and 6 months, and then twin girls, born prematurely who are now 6 months old. They ...
Holding the Father’s Hand
Today I had an interesting experience at Kasisi. It was one of those moments when an earthly example highlights an unearthly or to put it differently, a heavenly truth. I had been in our special needs classroom and had seen all the kids except the three youngest. Due to vehicle trouble this morning (!!!) again, I couldn't get there at 8:30 as I had intended. So after closing up the classroom, I went to visit and check on the three in the baby room who have some needs we are hoping to meet. Two were sleeping, and only one was ...
Francis
It is with deeply saddened and heavy hearts that we must share with you that at approximately 5 am this morning, Francis passed away from this life. After a solid day of eating and taking fluids and being more lively and vocal than he had since Friday, in the night we noticed a change in his breathing, and rushed him to a private clinic where they tried to treat him, but could not reverse the failure of his organs, nor keep beating that weakened little heart. Eric was able to be with him in his last minutes and hold his feet ...
Brighton turns one year old today
Some of you may remember a tiny, skeleton of a boy we met in June last year. He had what doctors around the world would call 'failure to thrive', since he had been born small with lack of oxygen at birth, doctors thought he had Cerebral Palsy, and then he only grew a little in length, but not in weight. When we met him at 6 weeks, he was a little skeleton with skin, and looked incredibly sick, with lack of pigment, lack of hair growth, and no interaction at all. Added to that was that the local hospital wouldn't ...
Training New Staff for our Community Centers
Today we restarted our training that began a bit in December for some staff, and earlier for two others. We are starting with two trained Social Workers, one Educator, and three younger girls (18 years each) who have someone with special needs in their home. We also have two teachers that came to our Basic Special Education course who would like to work with us, and another friend of one of our workers who wants to learn. So, there are 7 folks who are in sincere competition to learn all they can from me, and from the ...
One Classroom Going Strong
It is a wonderful encouragement to know other people that God has given the same desires He has given us: to love, educate, and speak for those with intellectual disabilities that many in the world do not think are valuable. Today when I went to the classroom at Kasisi, I was struck with this thought, that God is bringing together many across the city of Lusaka, and hopefully, the country of Zambia, though in little tiny pockets, to work together to bring light and hope, and we are so honored to be a part of that. As I walked into ...
The Website Snafu
Evidently there was a 'run' on people checking news about children who have intellectual disabilities in Zambia earlier this week, because our website had so much traffic, they termed it a BURST! Who knew? I just write these posts, and think maybe my Mom is reading, and a few others, but I guess we are right up there with U2 tickets going on sale at ticketmaster at a certain day and time, causing shutdowns on servers! So maybe, we need to move to a server that can take more traffic, and prepare for larger amounts of traffic to and from ...
Sensible Shoes
My Dad used to be very vocal about how impressed he was that his four girls, which included my Mom, my two sisters and myself, would wear sensible shoes when we went to NYC for the day. He would comment on this repeatedly throughout the day as we passed women in ridiculous shoes for walking, that looked like they were terribly uncomfortable. He was always proud that we chose sensibility over fashion (though I'm sure, knowing my Mom, that we were still quite fashionable!) You may wonder why I am writing about my Dad and shoes on a blog post ...
Such a surprisingly sad morning.
This morning we awoke to the news that Gabriel, the 1.10 year old we've been caring for with help from many people, including doctors, hospitals, and one great orphanage, as well as his family, had died in his sleep. We had held him yesterday, and sat with him, sang with him and heard his upset screams as we walked away. He had Lowe's syndrome, which is a ph balance problem, genetically passed from parents to their boys. Giving sodium bicarbonate is the treatment that prolongs life. Unfortunately, Gabriel didn't start on sodium bicarbonate until early January, after his bloodwork revealed ...
I think you can have him.
WHAT? Let me back up a little. We visited a boy in Kalingalinga today, who is 7 yrs, 4 months old, and is learning differently from other children his age, so we went to evaluate him and see what we could do for him. As we pulled up with our vehicle, while still inside the car, under a hooded sweatshirt, we could see the definite shape of a stature we know very well, short, stocky, walking with a decidedly wide stance....oh yes, he definitely has Down syndrome. And when that hood was peeled back, we saw one of the ...
The Core of Our Work, Part 2
The core of the work of Special Hope Network is always to help facilitate a fundamental paradigm change in the Region's awareness, estimation and expectations of children with ID and DD. However, there are four primary forces that have historically and substantially hindered the development and delivery of Hope to these populations in Southern Africa. For the sake of brevity I will list them here, but for whose sake I will likely profoundly underwhelm you by failing to address the true complexity of these forces. The first force shaping the cultural context of Southern Africa is the cultural bias that considers ...
Dr. Mumba, eye surgeon
In a world where children with intellectual disabilities are not valued, the few doctors that truly love and choose to care for children with significant disabilities really stand out. One of them is Dr. Mumba, pictured here. He works at Lusaka Eye Hospital, and has been a real gift to us as we've cared for Gabriel, a little guy you may have read about in previous posts who is currently blind, and has Lowe's syndrome. Gabriel had surgery last week on his left eye, to correct glaucoma, a cataract and to put a lens in. Today we took him back ...
Christmas in Lusaka, Second Installment
We had a lessons and carols service on Christmas Eve, since we couldn't go to church. Maddy led worship, Eric preached, Molly, Elizabeth, Sam, Maggie, Mollie, and I read Scripture passages. We sang worship hymns, and ended with Silent Night by candlelight, which was by choice, unlike all the other nights we sit by candlelight due to lack of electricity. Other than that service, it didn't "feel" like Christmas- it was about 85 degrees, sunny, not a pine tree in sight, and NO SNOW, like in Virginia, and New Jersey, and Massachusetts, where our families are. We are very thankful ...
Are these your only three?
Here is a different perspective from America. We were out walking for exercise today, and had someone asking us about our children. In the US, people were always absolutely incredulous that we have three children who have Down syndrome, as if it was SO MANY. Today, the question was, you only have three? Funny how different the perspective is when most families have so many children here! And, we really have four, counting our oldest, who doesn't have Down syndrome, but is now a Mom of her own four. But we don't go into that on the street, for it ...
Help! Please pray today.
Many months ago we met a very young boy who has Down syndrome at a local Physiotherapy clinic, and helped his parents to be able to get to and from the clinic, and helped them with some other resources. His name is Francis, and he was doing very well then, 9 months ago. Then, we checked in on him again 6 months ago. He was still going to Physiotherapy, and still developing and growing, though he was exceedingly floppy, with very little muscle tone. Fast forward to this week, and our recent heartbreak. Eric and Elizabeth went on Monday to ...
OH MY GOODNESS
Well, folks, drumroll please.....but after much prayer, visits to offices, phone calls to folks who might be able to help, and too much frustration to even begin to go over again, today we had a miracle. So for those of you not reading the daily journal section of our website, I'll recap the whole saga in one succinct sentence (ok, really two): We shipped a container of donated educational supplies, plus some of our household goods, and unfortunately, our container was the first one to arrive in Zambia after the ZRA had changed their document numbers (used to be #41 ...
Our First Classroom- BEGUN!!!
Today was a monumental day in the life of Special Hope AND Kasisi Orphanage. Kasisi has been cleaning, painting, moving furniture and readying a place to have a classroom for children who have intellectual disabilities, and I have been training the teachers, as well as organizing what educational materials of the ones we currently have (we still cannot access our shipping container and all the classroom supplies on it) for the children who will be attending. We currently have three children with Hydrocephaly, two children who have Cerebral Palsy (one is completely nonverbal), one child with global developmental delay, and ...
Gabriel: Life as an Afterthought.
We first met Gabriel as part of a pilot project we’d designed to try to find ways of getting an accurate census and statistics for children with intellectual and developmental disabilities in the high density, high poverty compounds in and around Lusaka. The very first house we visited enthusiastically invited us into their home because we were told that a little girl there was seriously intellectually disabled. As we scanned the dimly lit room that was their home, we spotted the little girl, 9 years old, her 18 year old sister, an older gentleman from the Congo who spoke only French, ...
Our First Zambian Funeral
We knew this day would come, since funerals happen often here, and we frequently see large open trucks full of mourners driving toward the two large cemetaries in town. We also knew that if someone in a family of a person working for us died, we could be expected to cover the entire cost of the funeral. This includes renting trucks/vans/buses for all the mourners (remember no one has vehicles), and providing food for all the people that descend upon the house of the person who died, which puts tremendous stress on the family and their limited resources. All the ...
How We Operate: Medical Care
As mentioned in the first post of this series, what we often find in our initial assessment of a child is that they are in desperate need of some sort of medical care. We can’t work on education plans or training their caretakers if the child is not healthy, so it is usually our first step after assessing. Thankfully, we have found a great team of doctors and specialists who are willing to work with kids who have disabilities (many health professionals are not, or simply give shoddy medical reports and recommendations on the child), and we have really come ...
Beginning to Train
When I was sitting in my Special Education courses in the 80's in college, I never dreamed I would be teaching those very same courses twenty-five years later, on a different continent, in a very different context. But, here we are in 2011, and I am starting to train teachers who are hungry to learn more than what they know, and thankful to learn more without having to pay to go to a university. This week begins twice-weekly lessons, open to all who want to learn, in basic training about Intellectual Disability, and how to work with folks who have ...
In a hand-brick hut in a village today
we met a boy named Henry. He is 8 years old, and approximately the size of a 3 year old. He lives in a mud-brick house with his Grandmother, and today his great- grandparents were visiting. His parents abandoned him when he was little, so his Grandma has raised him. A YWAM missionary named Janelle had been able to get him, wonderfully, a wheelchair, which is the only way he can sit independently. Most of the time he lies on empty mealie-meal bags stitched together into a mat on the hard-packed dirt ground. A long time ago, when he was ...
Special Hope’s Master Plan to Change the World for Kids with Intellectual disabilities
Well at least that’s what I call it, the official (and far less grand) title is The Continuum of Care. This is the third installment in a series of posts on the Continuum by which I share what we consider to be the ten core aspects in the life stage of an individual with intellectual disabilities here in Zambia and how we are working to inflect change and hope. The first two aspects of the continuum we considered focused on the primacy of the role of the parents in the well being of children with disabilities. Today we will look ...
He was born just ok, and then….
This is a constant refrain, as we meet families to try to assess their child. And, culturally, just ok, or 'cabe bwino' means 'good'. So, as we assess, we wonder how all these children can have been born fine, good, and then be physically and intellectually disabled at such a young age, with no clear reason. Today we thought we were going to see two children, and we ended up seeing four. This is a common occurrence, since moms here are just like moms anywhere around the world, and they talk about their children and their hopes and dreams for ...
Rain, Rain, and more Rain!
I am sure this is only the beginning, and I will regret saying anything two months from now, but MAN can it rain here! We are at the beginning of a three-month rainy season, and we've heard it rains some part of every day from now until February or March. I don't think we, or our vehicle, or our clothes will ever be clean again. And certainly not our guard dogs, who are outside dogs. They are wet and muddy, and love human attention, even when humans have clean pants on! There is mud everywhere. People still walk to work, ride ...
I AM DEAF AND DUMB, PLEASE HELP….
At least twice each week, while we are out and about, a man comes up to our vehicle, or to us, and shows us a laminated paper with the words, "I am deaf and dumb, please help" and they are always thrilled that we know sign language, and talk with them. Security guards shoo them away. People don't give them any attention. But, these are fathers, husbands, people that in Zambian society that don't get offered jobs. What would you do? Would you give them aid, to support their families, since they can't earn money in many other ways? or, ...
Another School requested and came for help today
We had the second encouraging request in two days- a school we work with has lost one of its teachers, and the substitute volunteer teacher called to ask for help. She wanted to know how she could best support the existing teacher, how she could figure out how to teach to the needs of each child? How to work on speech? How to teach sign language when it isn't being used at all, and there are three or four kids who definitely need it? This volunteer is the older sister of a boy we've begun to serve who has Down ...
What constitutes good communication to you?
It is an interesting fact of living in a new culture to find that even when we are speaking the same language with typically-developing people (English), we often do not feel we are communicating well, or more specifically, we are not able to be understood the way we intended the dialogue to be understood. And that exchange is with two typically-developing people in a fairly common sort of interchange. So, picture then, the frustration of a child who has an intellectual disability who has no means of communicating to their family, their church friends, their neighborhood friends, or anyone in ...
Welcome to Special Hope Network!
We are a faith-based non-profit corporation working in Sub-Saharan Africa in order to care for, teach, and love orphans and vulnerable children who have intellectual disabilities, for the sake and in the name of Jesus. We invite you to look around our site. We are constantly updating photos, videos, and our blog. We'll be adding new features specific to projects and countries we are working with on a regular basis. Welcome!More Featured Posts
Another School requested and came for help today
We had the second encouraging request in two days- a school we work with has lost one of its teachers, and the substitute volunteer teacher called to ask for help. She wanted to know how she could best support the existing teacher, how she could figure out how to teach to the needs of each child? How to work on speech? How to teach sign language when it isn’t being used at all, and there... [Read more]
Consulted with A School Today
We were asked by a school we have consistently worked with to come to their classroom for children with intellectual disabilities and help them to teach their children better. This, I believe, is a first for us. We often offer, and some accept gladly, but this is the first time a director has called and asked us to come, and sat in with the teachers on the meeting, with four other teachers, as... [Read more]
Finishing the Two-Week Training for Potential Workers
This week was the end of two weeks of intensive training for 10 potential workers for our two Community Centers. Due to everyone’s lack of education and experience at the beginning, and the learning curve that needed to be climbed, I presented them with a challenge: those who would learn, and ask questions, and try what they’ve learned, and keep learning, would get a job. Those who... [Read more]
Another Medical Trip today
This morning, one of our workers mentioned that her cousin, Musonda, who is 8 years old, microcephalic, delayed in all milestones, and almost completely nonverbal, has been crying all night, and not eating and drinking, for a few days. A few days??? Here, where the heat and dry air can make anyone dehydrated quickly? This was not good news. So I called our good doctor’s office to see if... [Read more]
Medical Care for Ichthyosis
About a month ago, as our team of folks evaluated the needs of children with intellectual disabilities who came to sign up for our new community centers and sponsorship programs, we met an engaging little 1 year, 5 month old named Nathan. He was born with bright pink, shiny skin, stretched tautly over his body, fingers and toes stuck to each other, and thumbs stuck to his palms. His eyes were stuck... [Read more]