Kesho Basi

Dear Friends of The Toa Nafasi Project,
 
My heart is breaking as I write these words and I can't even believe what they mean.  I've not yet wrapped my head around the events of the past couple days as they've been such a blur....
 
Vumi Temba - colleague, friend, sister - died last week and will be buried tomorrow, Tuesday, July 28, 2015.  

Her death was shocking and unexpected, and the empty space she has left behind is palpable and, at this particular time, I cannot see when it won't be....

I am not of a good mind to write much more now, so I ask you all who read this blog to take a moment of silence, just a tiny beat in the rhythm of your daily lives, and give us a care.

Not just for me as Sarah or us as Toa Nafasi, but for Vumi's family and friends especially her young daughter Grace, and for all the schoolchildren whose tattered notebooks slid under her red pen, whose playground squabbles she mediated, whose runny noses she wiped, whose earliest learning experiences she helped shape into positive memories.
 
Mwl, kesho basi, tutaonana tena mara ya mwisho alafu najua itabidi uniache.  Nitakukumbuka daima....

sarah

Clean It Up

Still working on my epic Kili blog - apologies for the delay - but I've been otherwise occupied the last few days enjoying the tail-end of Mama's visit before she heads back to the States later this week.

Until I get that masterpiece posted, please check out this cute story out of Boston, Massachusetts.

Titled "Special Education Students Remake Taylor Swift Video, Hope For School Visit," it'll bring a smile to your face, for sure.

I only hope T-Swizzle comes through for these guys!  Otherwise, I am never-ever-ever listening to another one of her so-cheesy-you-need-crackers-but-secretly-a-guilty-pleasure country/pop songs again!!

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When Taylor Swift heads to Foxboro later this week, a group of local students wants to make sure she considers a stop at their school, and they're taking their campaign to social media.

The students from the Assabet Valley Collaborative's Evolution program, which teaches life skills to students with special needs, turned Swift's "Shake It Off" into "Clean It Up," with lyrics about daily chores.

"When I get up out of bed every day, day, day, I always make my bed with no delay.  I brush my teeth, wash my face, face, face, then I'm off, then I'm off," the students sing.

The video has been viewed on Facebook thousands of times.

Special Education Students Remake Taylor Swift Video, Hope For School Visit « CBS Boston
 
These students are so inspiring to us all!  Please share this video," staff members say.

Swift plays Gillette Stadium on Friday and Saturday, and teachers say the students have been asking if she can visit them.

Nani Kama Mama?

Translation: Who's like Mama?  Answer: NO ONE!!

We are just off Mount Kilimanjaro having successfully reached Uhuru Peak, the highest point on the tallest freestanding mountain in the world (5,895 meters or 19,341 feet).

Both me and Mama made it to the top against really quite impossible odds, starting with our ages - her 70, me 40 - but also a lot of other factors: the fickle elements, the grueling trek, the fact that we're basically Washingtonians/New Yorkers who do NOT climb mountains!!

At any rate, still sore and tired from our journey, I'll make this post short and sweet and regale you with an account of our adventure at greater length once I've got my mojo back.

Until then, enjoy this photo of me and my Mama, best friend, and soulmate on top of the world with the guides who got us there.  Truly an unbelievable experience shared with the person who knows me best in this world, who brought me into this world, and who damn near took me out of this world on the way to the "Roof of Africa."  We did it, people!!

Is Special Education Racist?

Hey everybody, I'm headed off to the mountain tomorrow (eegads!!) but wanted to put up a quick post before my departure.  This opinion piece from the New York Times caught my eye and I thought I would share....

I'm not entirely sure where I stand in this argument except to say that pretty much every service offered in America has an element of *racism* to it just based on how our country operates on a socio-economic level.  That the powers-that-be would then apply a quota in order to level the playing field strikes me as counter-productive.
 
Really, the last sentence of this piece matters most: We should be trying to identify children with disabilities and to provide them with an education adapted to their individual academic, physical, or behavioral needs.

What do YOU think??

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More than 6 million children in the United States receive special education services for their disabilities.  Of those age 6 and older, nearly 20% are black.

Critics claim that this high number — blacks are 1.4 times more likely to be placed in special education than other races and ethnicities combined — shows that black children are put into special education because schools are racially biased.

But our new research suggests just the opposite.  The real problem is that black children are under-represented in special education classes when compared with white children with similar levels of academic achievement, behavior, and family economic resources.

The belief that black children are over-represented in special education is driving some misguided attempts at policy changes.  To flag supposed racial bias in special education placement, the United States Department of Education is thinking of adopting a single standard for all states of what is an allowable amount of over-representation of minority children.

If well-intentioned but misguided advocates succeed in arbitrarily limiting placement in special education based on racial demographics, even more black children with disabilities will miss out on beneficial services.

Black children face double jeopardy when it comes to succeeding in school.  They are far more likely to be exposed to the gestational, environmental, and economic risk factors that often result in disabilities.  Yet black children are less likely to be told they have disabilities, and to be treated for them, than otherwise similar white children.

About 65% of black children, compared with about 30% of white children, live in families with incomes below 200% of the poverty line.  From 1985 to 2000, about 80% of black children grew up in highly disadvantaged neighborhoods characterized by widespread unemployment, racial segregation, poverty, single-parent households, and welfare.

36% of inner-city black children have elevated levels of lead in their blood.  The figure for suburban white children is only 4%.  Black children are about twice as likely to be born prematurely and three times more likely to suffer from fetal alcohol syndrome.

In a study published today, we report that the under-diagnosis of black children occurs across five disability conditions for which special services are commonly provided — learning disabilities, speech or language impairments, intellectual disabilities, health impairments, and emotional disturbances.  From the beginning of kindergarten to the end of eighth grade, black children are less, not more, likely than white children with similar levels of academic performance and behaviors to be identified as having each of these disabilities.

In fact, our study statistically controlled for many possible factors that might explain these disparities.  Examples included differences in children's academic achievement, behavior, gender and age, birth weight, the mother's marital status, and the family's income and education levels.  In contrast, many previous studies reporting over-representation have not adjusted for these factors.  Instead, these prior studies have relied on school- or district-level data that did not adequately control for differences in risk factor exposure between black and white children.

It may be that black children are less likely to be identified and treated for disabilities because of a greater responsiveness by education professionals to white parents.  Low expectations regarding black children's abilities may also lead some professionals to ignore the neurological basis of low academic achievement and "problem" behavior.  Even those black children who do receive a diagnosis are less likely to receive help.  For example, despite being more likely to experience symptoms of attention-deficit hyperactivity disorder, black children are less likely than white children to be given a diagnosis of A.D.H.D.  And even among those who are given an A.D.H.D. diagnosis, black children are less likely than white children to receive medication to treat the condition.

The last thing we need is to compound these widespread disparities in disability diagnosis and treatment by making school officials reluctant to refer black children for special education eligibility evaluations out of fear of being labeled racially biased.

Pamphlets describing a school district's disability eligibility procedures are often written in dense legalese that may be hard for many parents to understand.  Revising them might make it easier for parents to advocate for their children during the eligibility evaluation process.  Community outreach programs can also help overcome cultural barriers to identifying children with disabilities.

Such programs have already been shown to reduce racial disparities in children's health and health care access.  We should be trying to identify children with disabilities and to provide them with an education adapted to their individual academic, physical, or behavioral needs.

"The Wax Pack" Versus "Babies With Scabies"

As always, I like to deliver on my promises and last week I said I would provide a brief chronicle of the last few weeks during which Vumi and I have spent countless hours helping students requiring medical care.  We don't have all that many options for *affordable* *quality* *healthcare* here in Tanzania, so we have just defaulted to the *best* hospital Moshi has to offer: Kilimanjaro Christian Medical Center.  Looks nice from the outside, huh?  As for what lurks within??  "The horror, the horror...."

During the interview period when we call in the parents or guardians of students who underperformed on Angi's assessment, we ask a series of questions (also devised by Angi) that we hope will elucidate why the child is failing in school.  

These queries concern the child's motor skills, cognitive skills, and behavioral/adaptive skills as well as the environment in which the child lives at home and the manner of his/her birth and mama's pregnancy prior to delivery.  Because some of the questions are a bit sensitive, Vumi does the bulk of the questioning with me piping in or slipping her a note on the side.

Sometimes, we uncover issues with vision or hearing.  Sometimes, the culprit is poor nutrition or a chronic illness that has not been dealt with properly.  Sometimes, the problem is psychosocial and we have to call in a counselor to talk to the child and his/her family.  Sometimes, there are other medical needs which we deal with on a case-by-case basis.

Recently, one such exceptional medical need was adenoid surgery which we have now provided for two poor bubbies who were doing poorly in school simply because they couldn't breathe.  This is Jeremiah Sunday (sounds like a Flannery O'Connor character, no?); he was the latest surgery patient.  Last year, it was France Julius (http://toanafasi.blogspot.com/2014/09/its-fun-to-stay-at-kcmc.html).
 

After the surgery, the kids are obviously completely gaga when they wake up and have no clue as to where they are or why.  Last year, France raised holy hell upon waking and had to be restrained by his mama, the nurse, Vumi, and myself.  I wasn't around for Jeremiah's awakening, but Vumi reported he was so aggressive, he knocked out two of his own front teeth!  Poor, poor bubbie....

There's other good stuff too....  As my sister, the doctor, said when she came to visit me way back in 2009, "There's some reaaaally interesting epidemiology here."

Indeed.

I'll try not to be too graphic in this post, but you guys know me; I delight in the gross-out effect!  And this year's roster of kids with shida (problems) was GROSS!!

First off, we had a record number of children whose parents complained that their kids did not hear well, perhaps up to ten children.  One girl, Elisia, is doing well in school but when we assessed her, we discovered ourselves - very easily, in fact, because she is nearly deaf - that she can't hear a thing!  So, even though she's doing okay for now, I included her in our mass trip to the Ear, Nose, and Throat clinic so we could get her treated and fitted for hearing aids since I imagine the issue will cause her problems down the line once lessons start getting harder and teachers more severe.

Of these ten or so munchkins, really only this girl Elisia has actual shida with her hearing and we are dealing with that accordingly.  She probably will NOT get hearing aids, but rather have a surgery that should take care of the problem entirely.  Inshallah.

The rest?  WAX, WAX, AND MORE WAX.  Never in my life have I seen such large masses of earwax!  Coming out of such tiny people!!  Chunky, gooey, icky, sticky WAX!!

Check out the photos below of Elisia sitting in the patient's chair ready for her examination and then lying on the wax-removal table.  Don't forget to get a gooood look at the earwax collection jug by the side of the bed.  The Msarangans definitely added to that day's tally!!

 

 

Also common amongst the students at Msaranga Primary are various skin disorders like eczema (an allergy) and psoriasis (a disease), ringworm (a fungus) and scabies (an INFESTATION).

Some of these conditions are curable, some not; some manageable, some not.  Personally, I think a large part of the problem is hygiene.  These kids are like kids anywhere: playing outside,  sharing EVERYTHING, putting random crap in their mouths, and then tramping home with all the muck of the day LITERALLY all over them.  They touch themselves, each other, and whatever's in front of them, don't wash their hands, and are generally impossible to keep clean.  Add to that, red African dust, dirt, and mud and you've got any number of creepy-crawlies seeking sanctuary in the  old epidermis.
 
One of my boarders at Gabriella, Danny from 2013, fell victim to a dread skin disease that covered his entire body.  HIS ENTIRE BODY.  (Again, my point about kids' being slapdash with personal hygiene: this lil' boo probably got rashy on his hands, then touched his face, then went to the toilet and touched other stuff, and voila!  Full-body creepy-crawlies!!)  It was so bad he couldn't sleep for scratching at night and even passed the condition on to his little sister while he was home from school.

Couple weeks ago, Vumi and I escorted Danny and his babu (grandfather) to the Dermatology clinic at KCMC where a lovely lady doc from Swaziland examined him and pronounced scabies, a rash caused by burrowing mites (cue vomit sound here).  We got a prescription for some kind of lotion for both Danny and his sister with strict instructions to wash all their clothes, sheets, etc. with harsh detergent and then hang them in the sun to dry.

Fast-forward two weeks.  Danny is still itchy-scratchy though the sister has taken to the treatment.  He cannot return to Gabriella without being cured and so he's missing days upon days of school.  This time, we take him to the local clinic in Msaranga.  The doc (Tanzanian, male, decidedly un-lovely) looks at Danny with disdain, DOES NOT TOUCH OR EXAMINE HIM, and pronounces eczema, completely different from scabies in that it is an allergic reaction and not a tiny insect.  Say whaaaa?

(PLEASE NOTE I'VE SPARED YOU PHOTO DOCUMENTATION OF THE GREAT SCABIES/ECZEMA DEBATE OF 2015....)

We purchased another prescription and this time, I am told, Danny is doing much better, but good God, man, diagnostics here are a nightmare, particularly if your doctor won't even examine you.... which makes treatment that much harder....

Anyhoo, whether they are Team Earwax or Team Skintag, one thing is clear, all my kids, their parents, me and Vumi are proud members of Team Wait-All-Day when we commit to going to a KCMC clinic.  There IS no hurry in Africa and nowhere is that saying more true (or more frustrating) than KCMC.  

We wait to get medical files.

We wait to be seen by the doctor.

We wait inside.

We wait outside.

We wait in "traffic."

 
Vumi waits with her phone.

I wait with my book/work.  (Fascinating behavior to the Tanzanians who seemed to regard my reading a novel AND waiting as some kind of self-imposed double torture.)

They also did not seem to understand my ENT waiting room garb which I adopted once I realized people people were hacking out of open trach tubes all around me.  Last thing I need is to be sprayed with stoma juice.

But we also wait with some of the cutest, sweetest little dumplings you'll ever meet!

 

This is Kennedy John .... Maro.  Yes, you've read that correctly.  Not John Kennedy, but Kennedy John, clan name Maro.

And, he is ADORABLE!  For some reason, he loves him some Mzungu Sarah and so every time he sees me, he runs up to me with both arms outstretched and throws his little body at me for a big hug!!  I don't know what I did to ingratiate myself with him thus as he faces scary new things every time we meet (urine sample, blood test, ultrasound), but for some reason, he finds me irresistable.

We spent a lot of time together, one-on-one, me and Kennedy John Maro because he had several health issues to be dealt with.  He was part of Team Earwax for a hot second, but two minutes and one giant chunk of wax later, he graduated to Team UTI.  

Poor lil' fella, he's been afflicted by chronic urinary tract infections for ages and his mama was at her wit's end.  So, we got him the whole roster of tests (much to KJM's dismay.... the blood test was especially disturbing and a layer of trust between us has forever been shattered, though forgiven with lollipops and Coca-Cola) and a course of treatment.

Once again, the big issue here is cleanliness and how to keep these kids clean and healthy knowing that they are village rugrats, rough and tumble in the brush, where even adults don't always have access to or place emphasis on clean water, proper hygiene, etc.

As usual, it's a learning curve and I am along for the ride, but man oh man, I'll tell you one thing for sure: if you can avoid getting sick in Africa, DO IT, cuz siyo mchezo! (it's not a game!!)

"Winter" Break

Hi everybody, and greetings from a cold and gray Sunday morning in Moshi.  The weather remains a big bummer and I am wrapped up in layers upon layers, wearing my hat and scarf indoors, and rockin' the old-school legwarmers.  Such is "winter" in the southern hemisphere....

Incidentally, this does NOT bode well for me, as in just TWO short weeks, my mama will be back in Tanzania, and we are climbing Mt. Kilimanjaro to celebrate our milestone birthdays this year (my unfortunate and misguided idea come to fruition....)

We climbed once before with my dad as well in 2008 and, while I made it to Gilman's Peak - the second highest point on the summit, but short of the true peak, Uhuru - Carla and David turned around at Mawenzi Tarn Hut, only Day Four of the trek.  Mama was fed up with the lack of amenities on the mountain (hot shower, dry pinot, New York Times style section), and Baba was chivalrous enough to accompany her down.

This time, however, Mama is INTENT on summiting and via email missives, I have been informed that she is "pumped!" and has been "working out like a fiend!!"  Great.  I seriously could not be LESS thrilled....

Anyhoo, as I said, two dread weeks 'til that fresh hell, so in the meantime, I am keeping busy during the winter holiday from school (the students get one month off, mid-June to mid-July, ostensibly the coldest time of the year here) by continuing to take kids who need medical care to various clinics as well as overseeing Vumi and gang's initial "tuition" of the 2015 class.  A blog post on our epic days spent at various departments at the Kilimanjaro Christian Medical Center is forthcoming (with gory details on everything from jugs of earwax to full-body scabies), but for now, a note on "tuition," Tanz-style.

Here in TZ, when one uses the word "tuition," it does not refer to school fees, but rather to the act of tutoring or the tutorial lessons themselves.

We have engaged a Standard Two teacher from Msaranga Primary School to conduct tuition year-round, after school and during vacations, for the kids who do NOT need the intense intervention of Toa Nafasi, but who still require some support.  Like Standard One's Mama T, this mwalimu is also of the old guard and even though she is approaching retirement, she is willing to help us out with remedial lessons for a small price.

For the kids who DO need the Toa Nafasi program, Vumi leads the tuition sessions supported by Yacinta and the four young teachers-in-training, and since we are late to do just about everything this year, Vumi thought it would be a good idea to get the party started over the month-long winter holiday.  So even while school's out at Msaranga Primary, Toa Nafasi is in the hizzy, maximizing the most of our time.

It's not ideal but because assessment was late, parent interviews were late, and attending medical clinics has been late, the 2015 Standard One students who were tested back in April/May are really just now benefiting from the program.

While on vacation, Vumi is teaching the group en masse for the most part with some of the other teachers providing additional support to those kids who we already know are really behind.  Once school starts up again, they will revert back to business-as-usual as they did with the 2014 and 2013 classes, pulling the kids out in small cohorts, teaching them for short, intense periods each day, and then returning them to the Standard One classroom.

This year we are working with approximately 53 students.  I know that number seems high (especially when compared with 2013's 21 children), but we are being extra-cautious when it comes to testing and even reading the results.  

Because Angi has not been in-country the last two years at the time of testing, Vumi and I have had to make do on our own with what we learned from her, and so I think the number of kids in the Project now is higher because we would rather be safe than sorry and not leave behind any child who might just be on the cusp.  My guess is that after working with Vumi and the team for just a few weeks, a good portion of these 53 will be back on track and can attend regular tuition provided by the school rather than the intense intervention from Toa Nafasi.  We shall see!  Meantime, peep these pics below!!

Yacinta does a math lesson and the kids

practice drawing the digits in the air.

Vumi stops to check on a child's progress.

Clara sits with a small group.

 

Yacinta puts in some one-on-one face-time.

 

 

 

When the teachers are busy, sometimes a friend can lend a hand....

 

 

....or you can try to work it out on your own!

 

A pint-sized Rodin!!

 

 

A pair of scribes.

 

 

The classroom is never complete without Vumi's daughter, Grace.

 

 

Last Friday, the kids received their Toa tees!!

 

G had actually already been given one long ago,

but she raised such a ruckus, I gave her another.

 

I think she looks like Fievel from An American Tail.

Agree or disagree?

 

Council for Exceptional Children 2015

Hello all, and greetings from a (finally!) sunny day in Moshi town!!  The rainy season appears to have done with, and we are now in just the kipindi cha baridi (season of cold), though of course "cold" is a relative term when you live on the Equator....

Anyhoo, this past April, while I was busy turning 40 and roasting goats and whatnot, my Toa Nafasi colleague, Dr. Angela Stone-MacDonald, was engaged in presenting The Toa Nafasi Project as well as her own scholarship at the annual convention for the Council for Exceptional Children in San Diego, California.  She has provided us with a brief account of the event below.

And, as Angi says, she is going to be repping the Project at another conference in just a couple weeks in Poland, so we shall have her testimony from that very soon.  Seems Special Education is of worldwide interest this Spring: from Moshi, Tanzania to Boston, Massachusetts to San Diego, California to Wroclaw, Poland!

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In April, I attended the Council for Exceptional Children Annual Convention held in beautiful and sunny San Diego.  For me, this conference was fantastic for many reasons not necessarily in this order: 1) Sun and warmth after a brutal Boston winter, 2) An opportunity to share the amazing work that we are doing at Toa Nafasi and the incredible results, and 3) An opportunity to see and work with wonderful colleagues.

My session was on Saturday morning on the last day of the conference on an absolutely beautiful day that was warmer than most during the conference.  I knew from experience that there would be a small crowd for the poster, but that just meant that those who came were really interested and dedicated to learning more about work displayed.

About 15 -20 people walked through the room during the poster session and I spoke individually with five people including three for a very long time.  People were impressed with the work.  One woman was familiar with the school in Lushoto where I had done my dissertation research and we discussed the differences in the model and the advantages and disadvantages of working in an inclusive setting.  Another women from the Division of International Special Education Services (DISES) wanted to know how I got involved in the Project.  It was very gratifying to say that I got connected in Tanzania through a friend in DISES and then expanding the work to The Toa Nafasi Project.  Overall, it was very productive and worthwhile.

I will be presenting at the end of June an hour-long presentation on the results so far from the Project at the International Association of Special Education Conference in Wroclaw, Poland.  I will have a full report and photos from that event in about a month.

Here is the poster I presented.

Poster Citation:

Stone-MacDonald, A. (2015).  Assessment and Curriculum Supports for 1st Grade Students With Mild Disabilities in Tanzania.  Council for Exceptional Children Annual Conference, San Diego, CA, April, 2015.