Joining Forces

An aside from the typical “How We Operate” series to let you know some exciting news on the Operations front.  Since we arrived a year and some months ago, Special Hope has been meeting and getting to know LOTS of great people and organizations working with kids who have intellectual disabilities in Lusaka.  We are excited to announce some big steps in creating formal partnerships with some of these organizations, and want to highlight a few:

1.  Hidden Voice School- a great school with lots of great kids, also lots of need!  Their teachers are barely paid enough to cover transport to and from work, their classroom resources are sparse, and their building could use some love.  Special Hope is so thrilled to now be working out the logistics of a partnership with Hidden Voice in order to bolster their already great school, and start several new programs there.  We are particularly excited to announce that Hidden Voice School will be the very first site for our Community Care Centers project!  Through this partnership, we will be using some of their space to develop Early Intervention Programs, all types of therapies, and a feeding program for kids who have intellectual disabilities.  We are so thankful for this opportunity as we believe it will greatly benefit the students already attending Hidden Voice, and make room to care for lots more!

2.  Next week, we have our first official meeting with the Permanent Secretary of the Ministry of Social Welfare and Community Development.  We have approached them (with the help of a Zambian consultant) with a draft Memorandum of Understanding in hopes that they would sign-off in agreement on the work we hope to do in communities around Lusaka.  Their signing this document will be a huge step for us as an NGO in Lusaka, so please be praying as we prepare for this meeting!

That’s all to report from Operations for now, though we will be excited to share more about the other potential partnerships we have in the works.

Speech and Communication Delays and How To Address Them

This past week, from Monday to Friday, every day, we held a course on Speech and Communication Delays and How To Address Them for teachers, parents, administrators, and anyone else that spends time with children who have intellectual disabilities.  I spent a lot of time reading every book we have here in Lusaka on Communication, and asking questions of our Speech Therapist from our Advisory Board to figure out how to break down the days and the subjects needing to be addressed to best meet the needs of children we are meeting here.  Finally, I came to the overall headings for each day of 1.  An overview of speech and language and intellectual disability,   2. Unclear/delayed speech (Down syndrome/intellectual disability),  3.  The need for Visual communication, (Autism/Asperger’s)  4. Issues due to Cerebral Palsy/Stroke  5.  Conclusion/Practice Excercises/Questions.

The biggest challenge was the varied audience.  Some folks were extensively educated, knowledgeable, some were parents who have researched their child’s speech or communication disorder, and needed some tweaking of what they are currently doing, and some next steps.  On the complete opposite end of the spectrum, I had teachers who came through the Zambian school system, with a true love for the children they teach, but little specific education to support that love and care.  Wow, that was a huge gap.  So, each day I wrote up a rather long handout so that people who needed to hear the information more than once could take it home and read and reread it. Each day I also had some practice time of the topic I addressed.  Sometimes it included mirrors to see their mouths, and sometimes peanut butter or marshmallow or chocolate to smear around the outside of their mouths to practice some oral motor skills or oral muscle work.  Sometimes it included my being ridiculous and singing silly songs like 5 Green and Speckled Frogs, or Skinnamarinkydinkydink, which those of you who know me aren’t very surprised about, but the folks in the class sure were!  I kept trying to impress upon them the need to sing, talk, interact, expect responses, and to be silly with young children who have intellectual disabilities.  They just didn’t seem to ‘get it’, though, until I actually did it.  So in the name of good teaching, I was silly!  And since I can still picture my 7^th grade French teacher from Central NJ shocking us by jumping up on the table while saying “SUR la table”, which I have never forgotten, hopefully this method will be as long-lasting here.  (For you non-French-speakers, that means ON the table.)

This theme has repeated itself time and time again here.  If we show teachers and parents exactly what to do, and how to do it, they get it and can reproduce our therapy or education with their child when we aren’t there, which is evidenced by either change in the child, or the parent showing us what they are doing when we aren’t there, and it is correct.  This course has solidified our place as a resource in the eyes of many schools and teachers that we have been helping.  I have appointments at no less than 4 schools this coming week to follow up on what the teachers learned and want to put into practice.  It was a very productive, useful week, with hopefully more courses to come.  Thanks to you readers who also financially support SHN, we were able to offer this course at no charge to teachers who will be teaching tomorrow morning in classrooms where 10-30 students with intellectual disabilities will directly benefit.  Thank you!

Options for Long-Term Care

Thus far, most of my posts on the Continuum of Care have been focused on caring for children, and so this post is meant to address the ways Special Hope Network plans to care for adults who have intellectual disabilities.

9. Adult Residential Community and Farm- this piece of the Continuum is designed to address the fact that there are very, very few options for adults who have ID to be a part of a community in Zambia. This is partially due to the fact that very few actually survive to adulthood; but since we hope to see that changed in Zambia, we obviously wanted to include them in our plans. We hope to build, as a part of Special Hope Village, a place where adults with ID can live and thrive in community with typically developing adults. They would be paired in a sort of ‘buddy system,’ and live and work together accordingly. Not just a place to live, we plan to train these adults in various skills, according to what they each like and are able to do, in order that they may feel purposeful and valued in our community. Some might bake bread, some might farm fruits and veggies, some might help out in the classrooms- whatever their hearts desire!

10. Hospice Care- In direct contrast to our first step on the Continuum (where we are working to partner with medical professionals so that more are appropriately diagnosed at birth), our last step on the Continuum is to focus on caring for individuals with ID as they die. Unfortunately, for many the time between that first and final step is so little, and though we are working adamantly to change that, we must recognize that for many, all we will be able to do is to make sure they are cared for and treated with dignity as their time on this earth comes to a close. To ensure that happens, one of our homes in Special Hope Village will be specifically used for palliative care.

As you can see, Special Hope has a lot of work to do. It is only with partners like you all that this Continuum of Care will ever be realized, and so are incredibly thankful for those of you who have been walking with us and will continue to do so. It remains our utmost goal that God be glorified in our work, and in the lives of the children we so dearly love.

Thanks for reading,
Eric Nelson, President, Special Hope Network

The Educating Of Philemon

Philemon was a boy.  A boy with fairly significant special needs.  He was blind, had hydrocephaly (fluid around his brain that made his head continue to grow, and didn’t allow the plates to fuse), couldn’t use his hands, arms, or legs, couldn’t walk, couldn’t talk, and to many who saw him, couldn’t become a ‘productive member of society’.  But Philemon is why we are here.  Being ‘productive’ I’ve often found is highly overrated. The Philemons of the world are the ones that cause us to think about what behavior is important in us, and our character, and how God expects us to act when confronted by a child such as he was.  Let me step back for a moment and explain why I am speaking in the past tense about him.

Philemon lived at a wonderfully loving orphanage just outside of Lusaka, Zambia.  He lived there for almost 4 years, and was clean, fed, sung to, played with, loved, and abundantly cared for in all his areas of need.  He almost died earlier this year when he had a hernia and needed surgery to correct it.  He was given the surgery, and tenderly brought back to health by the ‘family’ of caring folks at this orphanage who would never have considered anything else but the best care they could find for him.  He was a vital part of our special needs class, attending three times each week , and having books read to him, and listening to music on the cd player.  I knew him for about a year and three months.  I held him, rocked him, sang to him, and read books to him.  I challenged all who worked with him to watch him to see what he reacted to, since he couldn’t tell us with words.  If they saw a reaction, we tried to see whether it seemed to be a positive or negative one, and adjust our activities accordingly.  Working with Philemon was challenging, and required a bit of sleuthing to figure him out!  Last Saturday a group of Special Hope folks went to work at the special needs class, and no one was working with him when we walked in, so one of our staff offered to hold him and sing to him and read books to him.  I worked with other children.  That would be the last day of his attendance at our class.  He died on Wednesday of this past week.

I know that God is calling us to care for those who cannot speak for themselves, like Philemon.  I am convinced that this orphanage and their loving workers honored God and Philemon with how they cared for him.  I am thankful for the time I had with him, and that Philemon’s pain is now done.   That doesn’t erase the sadness at all.  Our little classroom of about 12 children has had two die in the past 5 months.  Gabriel and now Philemon.  Our lives won’t be the same, for having known them, and watched them live, and die, at under 5 years old.

Network: More than a Name

Network is not just part of our name, it’s how we work.

So far in my series of blog posts on our Continuum of Care you could say that I have been focusing on the first part of our name, Special Hope.  We have looked at how we are working to create real, tangible Hope for children and Adult s with special needs and their families and communities.  Today we are going to look at three more parts of the continuum and how we work to create networks of relationships and partnerships in order to increase awareness and extend the reach of our care.

So here are the next three aspects of the Continuum:

6.  Development of partnerships with key NGO’s , aid organizations,  and government ministries in order to expand focus and care for OVC’s with Intellectual Disabilities.

7.  Development of relationships with church bodies and pastors with a focus of training them to reach out and minister to families with I.D and D.D.

8.  Special Olympics – Support/start a Special Olympics program in order to challenge community perceptions and of course have a lot of fun!

There are some great organizations that work in development or orphan care here in Southern Africa but their programs currently do not include children with disabilities.  We are pursing partnerships with these organizations in order to extend our reach too more children and hopefully encourage transformation within these organizations themselves to include children with Intellectual Disabilities within their scope of care.

After being here for a year and three months of Sundays we have yet to go to a church that had any children or adults with disabilities present.  No, not one.  I am working particularly to create connections with pastors in order to address this cognitive and behavioral dissonance between faith and obedience.  Impacting churches will be fundamental to impacting the society.

Special Olympics has proved one of the most powerful forces for changing public awareness and perception since it was created in the 1960’s.  It also has provided some of the most fun you could ever have!  We are currently looking for partners to join us in re-establishing a full-fledged program here in Zambia.

If you know of an organization that could be a potential partner for us please let us know, as I said, there is a good reason why we are called Special Hope NETWORK!

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 USD per month to do this very difficult job.  Fourth, the teachers love their students, and wouldn’t change their job for any reason. And, fifth, the teachers are teachable, and want to learn!  Putting all those qualities together is an encouraging situation for me to go into, as a trainer of teachers.  It is very easy to teach someone who wants to learn, and has a teachable attitude.

I have been to this classroom to observe, and to see how currently the classroom is organized, and how children are taught.  Then I have been able to stay after class to give some ideas each time I’ve been there.  Further, the head teacher of the class has been to our training classes at our home, and has asked for more visual schedule PECS from me.  For those of you unfamiliar with children who have autism, most children on the autism spectrum do better when presented with material visually, rather than auditorially.  Depending on the severity of language disfunction, children either need visual schedules, or just need some visual support to the auditory directions, or ‘next activity’.  This is where PECS come in.  PECS stands for Picture Exchange Communication System.  We are currently making daily schedules for the classroom as a whole, and for each student specifically, focused on their educational needs, and adaptive needs, such as toileting, and handwashing.

This is Special Hope at its purest and simplest functioning.  Connecting with schools, and providing the training for loving teachers, therapeutic equipment, and technology, in order for them to love and serve their students more capably, efficiently, and specifically.  And this is why we love doing what we get to do, because this is the rewarding and fun part of Special Hope for me, as a teacher.

How We Operate: Research and Analysis

Neither of those words do much to excite most people, we know, however research and analysis are critical parts of what we do.  Special Hope Network is concerned with every aspect of life for a child with a disability- and more importantly, how we can work to improve each of those areas.  As far as we know, Special Hope is one of the only organizations in Southern Africa that is working to provide such comprehensive care to children with intellectual disabilities, and therefore, we must figure out best practices as we go.  This is where research and analysis becomes so important to us.

Whether it be reading the latest studies (such as the June 2011 World Health Organization’s Report on Disability and what it shows for people with disabilities in the developing world), or keeping up with the most recent news (such as the recent UN Report on Millennium Development Goals, and how people with disabilities were discussed within the report)- we must work diligently to make sure we have the best and most widely recognized data.  We must analyze and apply this information so that it properly informs and directs our work currently with children in Zambia.

And when the available data runs out or is seemingly off (as it often does/is when dealing with disabilities), we must perform our own research in order to seek out the information we need.  For example, the Zambian government reports that 2.7% of its population has a disability.  This statistic is problematic because according to the WHO, that number should be at least 10%, but more like 20% if it is to be consistent with the rest of the developing world.  Special Hope Network set out to find out for ourselves by going door to door with surveys, and found that in one focused area, a person with a disability lived in 1 of every 3 houses.  A different percentage entirely- one that makes a huge difference in the amount of care that is needing to be delivered.

It may sound dry and not as meaningful as some of our other work, yet research and analysis will always be a focus in the daily operations of Special Hope.

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 a market or on a bus. Wouldn’t you be frustrated?

We tried to meet that need by hosting a Sign Language Course at our home once weekly for the past ten weeks.  This just wrapped up this past Friday afternoon, and the general feeling at the end of the class was disappointment that it was over!  When I dismissed the class, no one moved.  It has been encouraging to experience the desire of teachers from 6 different schools we have been serving to learn more and to become better teachers to the children in their classrooms.  They want to borrow my books, and ask me specific questions about kids, and just generally do a much better job than they think they are doing now.  It is heartening, encouraging, and quite motivating to continue these courses when each is received so well, folks do the work, show up early, and desire to stay late.  I will go to observe in these schools over the next few weeks, and will check out how they are using their new knowledge with children who are deaf and have an intellectual disability, or have a limited use of their oral muscles, so that they need Sign as an augmentive communication tool.

As we wrap up one course, we are starting a new one, as well.  From August 5-September 5 Zambian schools are on break, and at the beginning of the break teachers will do some traveling to go see their families.  During the last week of the break we will be having a Speech Delays Course, which will include methods of teaching children whose speech is either nonexistent, delayed, unclear, or a combination of the last two categories. We will also address the difference between speech issues and language issues.  We will meet every day at our home, and will highlight specific needs we’ve seen here at the schools we’ve worked in, and give ideas, by showing teachers exactly how to attack a difficulty in a child’s speech.  We have only heard of 2 Speech Language Pathologists in all of Zambia, and they, as you can imagine, are overwhelmed!  We’ll be drawing on my experience with children with speech delays and communication delays and difficulties, and the tremendous Speech Pathologists who trained me daily as I taught, over the past 20 years.  The most helpful detail: I have been to each and every classroom of the schools that are attending, and have seen the teachers teach, and have met the children with needs, so in a way, I will be designing the course for those specific children, and those teachers, in the settings where they teach.  It will be kind of like the Speech and Communication part of an Individualized Educational Plan, which usually is written with one student in mind, with their skills and weaknesses, and how a teacher plans to address those needs.  I will just be adapting it to make the course for each of the differing needs I’ve seen in schools, orphanages, and homes.

Oh, yes, and this course will, like the others, be open to Parents, Teachers, Doctors, and School Administrators.  Our Basic Special Education Course had Teachers and a Doctor (about 18 taught).  Our Sign Language Course had Parents, Teachers, and some Nannies (about 30 total taught). We’ll see who comes to our next course, and in the meantime, I’ll be planning, planning, planning.  In sincere HOPE for better communication!

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 partnerships between Special Hope and several international and local NGO’s, as well as Zambian government agencies.  These more official agreements will enable us to reach even more kids who have intellectual disabilities, and for that reason, they will be so important to us!

If you know of an organization that you think would be a good match for Special Hope, please let us know!

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 children with any form of disability to be the result of a curse on or wrongdoing by the child’s parents or relatives.  This consistently results in these children being hidden in their homes, cut off from their communities, cut off from basic health care and what few educational opportunities there may be.  This in many ways resembles the historic cultural prevalence of Western nations to institutionalize children with ID.

Second, is the pervasive effects of chronic/acute poverty- causing many families not to have access to the basic necessities of food and clean water, and so within homes there occurs (whether intentionally or unintentionally) competition for resources inevitably resulting in further deprivation of those who have ID.

Third, is the paucity of any real and sustained support by the regions governments.  There are of course notable individuals and agencies who have worked and continue to labor with very little funding or governmental follow-through.

Fourth, there is an unmistakable selectivity in international aid organizations, community based organizations, and orphanages to not include OVC with ID in the scope of their care programs.

It is in light of these peculiar forces that PGV becomes a necessity.  Sometimes we can’t see the way the world should be until someone shows us.  That is our bold Hope.