As many of you know, we launched our Child Sponsorship program this year. Right now, we are so excited to have about 20 sponsors signed up, and we are working hard to get at least 40 more sponsors signed up over the next 3 months. Want to know a way you can help us?
We are looking for 20 people to host “Sponsoring Hope” parties. Invite family. Invite friends. Invite coworkers, neighbors, folks from church, fellow yoga-goers. Whoever you know that would want to be a part of changing lives for kids with intellectual disabilities in Zambia.
As a host, we’ll send you a DVD and a packet filled with all sorts of ideas for your Sponsoring Hope party. Just send an email to email@example.com to find out more, or to sign up to host!
Together we can do this. Your choice. Their chance. Our hope.
On May 8, Special Hope’s Community Care Centers in Ng’ombe and Garden celebrated their one-year anniversaries with a party! There were speeches, singing, dancing, eating and drinking- everyone had such a great time. The parents testified how great and wonderful Special Hope has been for them and their children, as they have seen much change and growth over the course of the year. We’re excited to share with you, friends of Special Hope, the stories that were told…
-Amake Bwalya said that she never thought her son would be able to walk or speak. He was so different than other children, so delayed in his growth and learning. But after one year with Special Hope, she now knows much more about caring for Bwalya (pictured above)- who is now walking and speaking!
-Curren’s mother spoke about her daughter (both pictured above) and the difficulties she had getting Curren to interact with other children. Curren was so malnourished that she couldn’t play like other kids. Now, she has grown from 7 kgs to 12 kgs, and has learned to walk. She loves to play with the other kids, and Curren’s mom is so happy.
-The grandmother to Prosper talked about how before coming to Special Hope, she had no idea what was going on with her grandson. He didn’t know how to care for him or where to take him to find help. When she was told about the Community Care Center, she was so glad. Now after one year, she understands more about Autism and how to care for Prosper.
-Patson (pictured above), who is deaf and developmentally delayed, has learned so many signs over the past year. He is now able to communicate by signing numbers, letters, colors, his name, and basic words like toilet, food and please.
-Lots of kids have improved thanks to physiotherapy! Gloria and Deborah are learning to crawl, which motivates their mommies to work even harder. Ephriam can now support himself by pushing up on his hands.
-When Ruth first came to the Community Care Center when she was four years old, she weighed only 8 kgs. She was so malnourished that her hair was off-color and she had very little energy. Now, she weighs 12.5 kgs and is much more engaging. She has learned to sit-up by herself, and her grandmother (both pictured above) is so proud.
Overall, the staff, mommies and kids at the Community Care Centers all had a very memorable day together. It was important for them to come together and remember what God has done for them and their children through Special Hope. They want you all to know how grateful they are for the blessing of God through your investments, prayers and support.
Although we are still gathering specific data, we have found the prevalence of seizure disorders amongst the Special Hope children to be incredibly high. This is mainly due simply to the kinds of disabilities we see – cerebral palsy, hydrocephalus, global developmental delays, autism, metabolic disorders, etc.
A seizure is a disturbance of the normal electrical activity in the brain. There are two kinds of seizures: generalized tonic-clonic (affecting the entire brain) and complex partial (affecting only a portion of the brain). These can generally be distinguished in the clinical setting by observing or hearing a report of the symptoms of the seizure activity. Only further clinical testing (i.e. EEG) can determine exactly what the brain’s electrical activity is doing, if it can be caught at just the right moment.
There is limited access to neurological specialists in Zambia – it may take 3-4 months to even get an appointment at the large government teaching hospital (UTH). This, combined with poor health care education of the parents, limited access to anti-seizure drugs (there are frequent shortages), and the politics of poverty can make managing seizures very difficult.
A common scenario is that a mother will say that her child is having “fits” (seizures). When you question her further, you find:
1) that she stopped giving her child the medication because it made the child too sleepy
2) they ran out of medication 2 weeks ago because the government clinic/hospital was out
3) The dose is given at various times of the day rather than on a strict schedule
4) The child is taking the dose as prescribed and the drug is not therapeutic (meaning the child still has seizures)
It’s important to treat seizures to prevent further brain damage and increased developmental delays. For some of these children, the continuous seizure activity is devastating to their development and greatly hinders their progress in school and therapy.
It is unfortunate that many of these situations could be prevented by patient teaching and better medical management. Special Hope is working on providing such resources to the families we serve to help bridge the gap to these parents.
One of the many things that Special Hope Network does is provide medication when the family has run out and providing education to the families about seizure disorders. The goal is to empower the parents to understand and better manage their child’s seizure disorder so that the child can develop to their full capacity.
Want to be a part of changing the life of a child who has a seizure disorder? Available to sponsor with Special Hope are over 10 children who need seizure management on a regular basis. Look on our Sponsorship page for Charles, Gracious, Agnes, Charles, Moment, Joseph, Stali, Albert, Davidson, Sipiwe (pictured above) and Deborah. They all need sponsors!
Andrew Morrissett will be volunteering with Special Hope over the next several months to begin our Advocacy program here in Lusaka (some of you may remember him from our Invest in Hope series). You’ll hear more from him in the coming weeks, but here is a quick intro post from Andrew…
I grew up in Roanoke, Virginia and in 2005 went off to the University of Virginia for college. After four great years, I graduated with a B.A. in History and started working for a community development non-profit called Charlottesville Abundant Life Ministries. For three years I served in a variety of roles supporting CALM’s mentoring, tutoring, financial literacy and AmeriCorps programs which focused on a low income neighborhood.
Incidental to this work, I had the chance to work with several refugee families from all over the world. Eventually I got the chance to go overseas myself and spend three months in South East Asia. Unsurprisingly, I began to see my focus on development and human rights expand from just neighborhoods in the U.S. to a more global scale. As Christ motivated in me a love and respect for the vulnerable and marginalized in urban America, I saw that same motivation expand to include the vulnerable abroad.
Enter Special Hope Network. For three years I have been keeping track of and supporting Special Hope because of a friendship with Beth (COO at Special Hope) that started in college. I have been so inspired by their work on behalf of kids with intellectual disabilities and I guess it’s therefore unsurprising that my desire to work in the arenas of international development and human rights has now brought me to Zambia.
So here I am. I’ve been in Lusaka for two weeks now, getting oriented to the programs and vision of Special Hope. I’m going to be working to start up their Advocacy Program, which has the lofty yet crucial goal of changing the way that children with intellectual disabilities are perceived by the culture at large and by institutions like churches, schools, NGOs and the government itself. If we can advocate well for these children, and show that they are inherently valuable and loved, then we can begin to change the way they are cared for by all facets of society. This Kingdom-oriented work presents an extremely difficult task, one that is truly in the hands of God. I am looking forward to the way that the intellectual disability community will continue to challenge the way I see the world and I pray it brings me more closely alongside God’s heart for the most vulnerable.
At its heart, Special Hope Network is a human rights organization.
That is probably not how you expected me to describe us or the work we do on behalf of children with intellectual and developmental disabilities. It is a truism that has been repeated in every child I have ever worked with…the single most distinguishing or determining factor in the life of a child with intellectual or developmental disabilities is the perception of the worth and joy their parents find in them. So, you see, the most essential feature of our work is to continually increase the sense of the inherent human rights and value of our children.
At the end of March, we have the opportunity for a volunteer from the US to come to Lusaka and begin a formal advocacy project, the goal of which is to reach out to the second most important force in Zambian life- faith communities. Our bold hope is that he will begin the process of changing the culture of fear, loss and neglect which dominates the cultural milieu. Unless we are successful in altering the fundamental view of our children’s human rights and worth, all we will produce is one-off victories and anecdotal accomplishments.
I grew up in an era of United States history where, as a culture, we moved from the extremes of predominant institutionalization to educational inclusion and mainstreaming. I have seen it happen. Cultures can move, can be transformed.
And for the future hope of our children, they must.
-Eric Nelson, SHN President
Today is 3/21, and so the world recognizes all those who have Trisomy 21. Special Hope loves each kid we serve, but today we are celebrating those special ones with Down syndrome!
Love kids with Down syndrome too? Why not sponsor a child with Down syndrome through Special Hope? The following kids are available to sponsor…
The following is an excerpt of an interview with Amake Sarah, published by Amy Julia Becker, on her blog Thin Places. Amy Julia is currently posting a series of global perspectives in honor of World Down Syndrome Day this Thursday. Read more from this mother on what it’s like to parent a child with Down syndrome in Zambia…
An update from Holly Nelson, our Director of Education
In order to better care for all the needs of each child we currently serve at our Community Care Centers, I have done complete educational assessments on all of them. For any of you that are non-education types, an Individual Educational Plan covers the current performance of a student, and the next areas to work on in the areas of cognition, communication (expressive and receptive), motor (gross and fine), and self-help/adaptive skills. Also it might be prudent to mention that in a given school year, I have never written more than 15 IEPs, and they were spread out over 9 months. Never more than 2 in a month, as far as I can recall. Most years I wouldn’t write more than 5- they are just that much work.
In the past two months, just shy of 70 Individualized Educational Plans have been written! Each child had an assessment of their cognitive/academic abilities and skills, their communication skills, their gross motor function, fine motor function, and anything else of note that would affect how they learn best. This in itself was no small feat, since not every parent and child team speak English. We used translators and toys, puzzles, and games of all sorts, and an incredible amount of energy, creativity and time. The next step is to meet with each parent regarding their child’s plan and how to push their child to the next developmental step, in each area of development.
The reason we spent time on this is because our desire has always been to create not only a program for kids with disabilities, but an exceptional one, one we believe they deserve.
Our first quarter update will be coming out soon, so make sure you sign up to receive the email! If you need to update your email address, you can also do that on this form. Click here to be redirected to the sign-up form!
Being a mother changes everything. Here in Zambia, in the local language, even your name changes when you become a mom. If your daughter’s name was Hope, you would be known as “Amake (pronounced ah-mah-kay) Hope,” meaning “mother of Hope.” As a mom in Zambia, as in many other places around the world, your identity is deeply connected to your child’s.
For the next two weeks, we will be featuring short videos of mothers here in Lusaka. Each of these women have a child with an intellectual disability, and have been coming to a Special Hope Community Care Center for several months. They wanted the chance to tell each of you, Investors in Hope, how much your gift means to them. Though they are a bit camera shy, and nervous to use their English, please know they are incredibly grateful to you…
When we first met Frieda, she was 11 years old and had no way to communicate with her family. Can you imagine how frustrating that must have been for her and her mother?
Now that they have been coming to our Center in Garden for almost a year, and after a lot of hard work by our staff, and especially because of the persistence of Amake Frieda- she has made lots of improvements. Her body was so stiff from Cerebral Palsy, but now she has gained enough strength and flexibility to be able to sit at a ninety-degree angle, and for her neck to support her head. She loves songs, especially “Open, Shut Them,” and when someone reads to her the “Llama Llama…” books.
Be sure to watch the video of Amake Frieda on Facebook- she wants to thank you, investors, for helping her to gain the ability to communicate with her daughter!