A Day to Mourn

Special Hope has been busy busy with the start of our Community Care Centers in both Ng’ombe and Garden compounds.  We are so excited to say we are gaining ground in both places, and that kids there are growing and learning!  This morning, however, we took a pause to remember the lives of those children we have lost.  Two days ago, Jacob Chanzi died.  He was only two years old.

His funeral brought us back to a familiar place, though we found it greatly changed.  Last year, when we buried Francis…

the particular area of the cemetery was almost completely empty.  This is what we saw today…

Hundreds and hundreds of graves filled.  Some of them with ornate markers, some with plain, some with only a number…

After the singing of hymns by the choir and attendants, the coffin was nailed shut…

and we all walked with it to the area of the cemetery where children below the age of three are buried…

The pastor gave a short sermon, which another man translated into English…

Then, the coffin was lowered into the grave, while the choir sang more hymns.  It was a beautifully sad moment.  The cemetery workers worked with eerie efficiency to cover the plot…

At the same time, other workers nearby dug the graves of the rest of the children who would be buried today…

Jacob’s uncle spoke at the end to thank people for coming, and everyone got back onto the backs of the trucks to leave.

Please pray for the Chanzi family and all of the sadness they must feel at the loss of their only son.  Pray especially for Amake Jacob (Jacob’s mother), who according to traditional superstition, was not allowed to attend the funeral.  We thank God that Special Hope was able to know him, though our time with him was incredibly short.  May he rest in peace…

Jacob Chanzi

15 December 2009 ~ 19 March 2012

Classroom for 8 with Autism Spectrum Disorders

We served a class today that we’ve been serving now for over 18 months.  It is called Bauleni Street Kids, but actually is a school, and has a wing of the school for children who have disabilities.  We work with all the classrooms, but mostly the class for children with fairly severe autism (most of the children have no verbal language, and their cognitive ability is tough to teach to in this setting).  Many organizations have come and dropped off PECS (picture exchange communication system) on their short visits to Lusaka. They are sitting in drawers not being used.  Frankly, without constant modeling of how to use them, and going back to see what is being done, and tweaking what needs to be changed, folks here just have trouble picturing how they (PECS) can benefit the student and the teacher as she tries to teach.  So, last Saturday, we took Devon, our fully US trained teacher of folks with autism to say what we’ve been saying to them for the time we’ve been working with this class and staff.  She showed them how to use the visual supports, and explained why, and I think, it finally clicked for the head teacher!  Yeah!  We reorganized her room, moved things around, cleaned, and set up a group time area complete with songs and their matching PECS, and set up a rice table, with scoops and buckets and little hidden toys under the rice.  That was the truly culturally absurd thing we did, since people think of rice here as a treat, only for special occasions, and then we bought a 10 Kg bag of rice and *gasp* poured it into a child’s classroom water table?  Oh, my, how frivolous!  Hopefully, they’ll have some fun with it before cups of it begin to disappear to be eaten.

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 syndrome and autism, and probably a very low thyroid, though he is violently opposed to a needle to draw blood.  So, she clearly understands life with a person with an intellectual disability.  She is kind, patient and thoughtful.  She wants to learn, which is far and away our best type of person to train.  She’ll begin to add sign language to their daily routine, and will support the existing teacher as she leads group times, so that PECS and sign language are added so that more students can be engaged.

It is encouraging to be seen as a resource to schools that truly do need help.  We must be doing something right for them to be coming to us when they need insight and wisdom.  We are glad to be of help, and glad to be used to benefit children who need good teaching.

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 well.  Not one to waste moments, or breath, I took 5 women we are training with me, so that they would be privy to all the insight I could help this school to learn.  It was good that I took them, since they added to the question times when the teachers didn’t quite know how to ask a certain question.  Two great things came out of our time today, besides the good I’ve already mentioned.  One, we have scheduled a Sign Language Class for three students, their families and all the teachers, for Thursday of this week, because they really want to learn, and the students desperately need it.  And, two?  They want to build a group home for adults who have intellectual disabilities, and want us to consult with them on how to do it.  Wow.  Zambia could be a very different place in just a few short years if energetic, loving and capable folks can work together to provide learning environments for children and adults who currently have nothing.  We are very excited to see what the next short years bring!

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 just came and sat and didn’t interact, and didn’t ask questions, and learn new skills, wouldn’t be hired. That seemed to do the trick!  The competition was fierce, and questions were thoughtful, and each person is trying to do better with the children than the others.  So our team has quite a hard decision, to figure out who are the bright spots to start working with me at our Centers, and who might be good to keep training for the next positions, and who just doesn’t have the energy, creativity and patience to do this job at all.  We have our work cut out for us this week for sure!  Pray for wisdom for us as we choose, please.

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 a doctor could see him, last minute, and was willing to see a child who could not speak to say what was wrong with him, or more specifically, what hurt. Even though Dr. Marsden wasn’t there, Dr. Singosha was willing to see him, and I explained that we’d love the acute illness to be checked out, as well as his overarching developmental delay.  We have wanted to take him to the doctor to see if his lack of speech is due to something physical, or something emotional.   You see, he has been abused by parents who clearly didn’t want him.  He was made to drink urine.  It is hard for me to even type that, and harder for me to consider you reading it.  But, it is a true statement of what this cute little guy has had to endure, all because he isn’t ‘normal’.  And we know that emotional disability causes a lack of ability/desire to talk.  So, how to treat and educate Musonda has been a bit tricky.  Do we hope that the emotional stability of moving in with his grandparents, who clearly love him, will overwhelm the emotional hurts, and give him the strength to start to speak?  Or do we teach him sign language, since he can clearly receive the language we are speaking to him?

We have been teaching Musonda’s grandparents and everyone related to this family to sign everything they say.  They want to learn, and want to help Musonda to learn.  So we give him the support of a way to express himself, while hoping that the love and stability of his grandparents will overwhelm and heal the emotional hurts he has experienced.  And, we’ve been sending an educational worker once each week to teach him in his home.  He LOVES that.  Books, balls, singing, coloring, playdough, and a person there just for him?  Oh, he cries when she leaves.

So, please pray for Musonda. For emotional healing, and physical healing. Today the doctor found that he has an infection, so prescribed antibiotics.  He is also anemic, so she prescribed, and gave him iron to begin taking today.  He is underweight and under-height, so he needs extra nutrition, but his family doesn’t have extra money to put toward his food variety.  So, we will support them with soya porridge which has been donated by a local company for us to give away.  It was a busy day, but a day of doing the daily work of caring for children with intellectual disabilities here in Zambia.  Thank you for caring for us and our work!

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 open wide because the skin around the eyes didn’t have room to allow the lids to close.  He didn’t have any hair anywhere on his body, no eyelashes, eyebrows, or head hair.  He is, despite all this, both engaging, and quite adorable.  His Mom is a researcher, and had done everything she could do to figure out what to do, and how to help her son.  He is clearly loved and cared for by his parents and caregivers.  His Mom is one of the very few who sang to him while we waited for the doctor!  THAT was a nice change for me, who is usually the singing one in every waiting room!

The great piece of news is that developmentally, he is on-target, with no apparent intellectual disability.  His speech delays seem to be related to the tautness of the skin around his mouth, and his walking won’t be considered delayed until at least a month from now.  His weight and height are just a little below normal, so Dr. Marsden gave Nathan’s mom ideas for getting him better calories than he is currently getting.  And, she encouraged her to keep using lotion on him (vaseline is the best) 5-6-7 times a day to help the flaking skin.  If we were in the US, there would be things that would soothe the itchy skin without being prohibitively expensive, but here?  Ohh, the other skin ointments are a lot of money.  All imported, and all too much for a child that needs this so many times a day.

We ended the day with a very thankful Mother and a boy who will receive all he needs to grow up well.  A good day, a very good day, for sure.

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 books I have here, as fast as they can. We open our Ng’ombe Community Center in a few weeks, and one in Garden soon after that. If they can’t assess a child’s needs quickly and know exactly what to start working on with that child, they’ll be let go. So, the pressure is on, for sure. Today when I was teaching them, and mentioned that, the looks around the table became very serious. Everyone needs a job, and everyone here wants a job with us, but not everyone will make it to the end of the race. Some won’t. That will be both hard, and easy, as it is apparent who really wants to learn, and is trying to learn as quickly and thoroughly as they can. I keep repeating to them that only the most patient, creative, energetic and fun people are those that should be working with children with intellectual disabilities. I try to remind them that children with ID are unique, and need the most specific teaching to meet their needs. We have our work cut out for us this week, to teach each of these potential staff members to know how to teach, give therapy to, and interact with every potential variation of special need that might walk in the door to our Community Centers. We must be prepared, and we must be loving and top-notch!

Sneak Preview: Changes at SHN!

That’s right, friends. This post is meant to give you all a sneak peek of the up and coming things happening here at Special Hope…

Within the next couple weeks, our website will be undergoing a significant facelift! Thanks to consultation from Brooks Adams Research and design by Kate Carpenter Design, as well as images from Mallory MacDonald Photography, we will be unveiling a new and improved site in order to keep you up to date with the goings-on of SHN. This has been an amazing collaborative effort, and we are so thankful to each of the participants- both new and old friends! Stay tuned for details and for a guided tour of the site.

For the past several months, we have been developing and beginning to implement a Child Sponsorship program for kids with intellectual disabilities in Zambia. We are so excited about this new program, and though we save the logistics for a later post- we did want to give you a heads up on this new opportunity to be involved. By sponsoring a child, you will ensure they receive direct benefits through specific programs designed to meet their needs. These programs will be run out of Special Hope Community Care Centers located in various neighborhoods around the city of Lusaka. Sponsored children will receive the following benefits, depending on their needs:

1. General Developmental Assessment

2. Medical Support

3. Nutritional Support

4. Educational Support

5. Therapeutic Support

6. Parent and Family Support

Our Child Sponsorship program will enable us to care for hundreds more children than we do now,  so we are so thrilled to announce it. Again, stayed tuned for more details!

We know change can sometimes take some getting used to- but we really believe these changes are only going to further our work with kids with disabilities, so thanks for being willing to change and grow with us!

Tweaking an Already Existing Program (for a change)

One of the things we thought we would be doing more of when we got to Lusaka was adding to existing programs, and giving teachers and parents new ideas to augment their current educational plans. Due to many factors, we have just not had the chance to do this very often. Two of the main reasons seem to be a lack of classrooms that are already working with children who have disabilities, as well as parents who aren’t already doing anything educationally with their child who has a special need. Today we had the chance to fill this previously expected role. A parent of a child who has Down syndrome called and asked us to look at her son’s whole educational plan to see what was missing, or what needed some alteration. So four of the Special Hope Team met with this Mom and her son’s personally hired and trained ‘teacher’ (not a trained teacher) this morning. It was so encouraging to meet with folks who are already thinking about all the areas of learning, and how they are seeing growth or lack of it, in each area. We went through reading, writing, math, sensory needs, stubbornness, independence, puberty, appropriate pushing toward growth, and more. We were able to encourage them about what they are doing well, all on their own, without a school system and team of therapists guiding them. They have put together a little classroom for this boy, where he goes for his morning academic time, and hired and trained a teacher for him. Then he goes to a local private school, one I have mentioned to you before that is currently doing some work with children who have intellectual disabilities, for some social and group learning times as well as some sports. Beyond that, this family would also like to partner with us when we get Special Olympics up and running, and would be an active part. They did this all on their own! So they are thankful to have us on the ground helping them with this boy’s educational plan and moving him forward as he grows at each stage, and we are thankful to have them, because it is an encouragement to have a family truly want the best for their child and be actively seeking what that looks like for him. Now we just wish we could clone their program for the other 25 or so children who have Down syndrome that we serve that don’t have even the tiniest little piece of what this one child has. We’ll be working on that next.