WEEK 4 CONFERENCE ON AUTISM

I completed my last blog by speculating as to what I was going to say at an upcoming conference dealing with special needs children and being attended by pediatricians, psychologists, and specialized children’s workers.  The conference had a special focus on autism.  I was not asked to be a speaker; I was “informed” that I would be speaking.

The desire to hold this conference came from the Promitei Centre, a local institution in Zaporozhye that looks after special needs children, and an NGO group “Unity” that advocates for changes in Ukraine to improve the life of its citizens.  The Mennonite Centre has worked closely with both groups.  The Mennonite Centre agreed to sponsor this conference at a cost of 20,000 greevna.  That is $1150.00 Cdn or $875.00 US at today’s exchange rate.  This money covered the cost of bringing in a speaker from Kyiv, paying the transportation costs of those attending, as well as covering the cost of the venue and the food.  As the sponsoring organization it was quite proper that a representative from the Mennonite Centre get to welcome the guests and give a context as to why this conference was being held.

The objective of the conference was to get doctors to make an earlier diagnosis of autism and then provide an environment where children with this diagnosis could learn social and life skills.  From one of the speakers at the conference I learned that there is still a tendency from Soviet times to hide children with this problem in their homes.  Society does not want to see them or acknowledge that everything is not perfect.  Consequently parents of a child with autism are given a 24/7 life sentence of looking after this person in their home for as long as they live.  Once the parents die, these special needs people are moved into a “Level  4” facility where they are fed and housed but otherwise ignored to live out the rest of their lives. 

I was asked to be very brief in my comments but also very clear in stating the objectives of the conference.  I wanted the attendees to know what the Mennonite Centre was and what our motivation was in sponsoring this event.  I started by commenting that I must have descended from people with restless genes as my ancestors had moved from the Netherlands to Prussia about 400 years ago.  After 200 years in Prussia/ Germany, they moved into this region of Ukraine where they lived for 100 years before moving again to Canada.  I told the audience that there were many people in Canada and the United States who had grown up hearing their parents talk about life in Ukraine and that these people felt a personal desire to help improve the life of the current inhabitants of the area.  That is why they donated to money to the Mennonite Centre to allow our organization to sponsor this conference.  I also told them that we wanted to see people with autism be given a chance to live as full a life as possible.  I did all of this in 2 minutes with Oksana, my interpreter also taking that much time.  At the end of my speech, Oksana and I had agreed to reverse roles and I finished my speech in Russian by saying “spasiba”, which Oksana translated as “thank you”.  I saw it as a test to see if the audience had been paying attention and hoped that I might get a smile or two.  The audience actually laughed.

Oksana and Alvin at the Podium

The choice of main speaker was brilliant.  He is an American pediatrician by the name of Dr. James Peipon and has lived in Ukraine for 14 years. He serves with an organization called Ukraine Medical Outreach.  Their slogan is “Treating the Whole Person, Body and Soul”.  He was an engaging speaker who made a number of important points.  First, we all have a bit of autism in us which manifests itself in certain repetitive behaviour.  We usually learn to control it and can lead a normal life.  His second point was that when parents suspect their child may be autistic, statistics show that the parents are almost always correct.    This was a note of caution to the pediatricians in the audience to listen to the parents.  The tendency in Ukraine is for doctors to see a child with autistic symptoms and to say, “Let’s wait a bit and see if this behaviour will go away”.  Dr. Peipon urged them to refer these children right away to a psychiatrist or other specialist and not wait.  The sooner that these children are placed in a proper environment, the sooner they will have a chance of learning social interaction and have a better chance of coping in society. His third point was to tell people that after a diagnosis, they have to do something.  Sitting back and expecting someone else to initiate the solution was not acceptable.

An Animated Dr Peipon with Olga Rubel Translating

The capacity audience was engaged and there were many questions.  There was a request for a more such conferences.

Part of the Audience in Attendance

An interesting “medical text” was handed out for doctors to take with them.  It would help them as well as parents recognize the symptoms of autism.  The book was totally in Russian and did not mean anything to me, but Mary pointed out one page at the bottom where it had a picture of a child lining up his toys.  Mary knew from a friend of hers with an autistic child that this was a symptom of autism.  I then studied the page and started recognizing what the pictures were telling me.  The book was a popular item for attendees to take home.  You can click on the picture to enlarge it.

Page from the Medical Text

The news media was present and the whole conference was recorded by a local television station.  I even got interviewed.  I was hoping that they would ask me something about Mennonites but instead the interviewer wanted to know how such children were treated in Canada.  I told her that we try to give them as normal life as possible by having such children attend the usual classrooms with the special needs child receiving care from a dedicated teaching assistant.  I should have mentioned that the cost of the teaching assistant is covered by the government.  In Ukraine, they can have special assistants in a classroom but the costs have to be covered by the parents.  Almost no one can afford this expense.

As a former government employee, I have attended many conferences over the years.  The best that can be said for most of them is that they were of some interest.  Not only was this conference of some interest to the attendees but from the level of interaction, I would expect some of them to actually apply what they learned.  The conference was that good.

Dr Peipon with View of Head Table

The Mennonite Centre received a lot of mention in the conference.  It was an excellent investment for our organization.  Thank you to all donors who have given generously to allow the Mennonite Centre to have sponsored this event.

If you wish to know more about the work of the Mennonite Centre, you can check out our web site at: http://www.mennonitecentre.ca/ or follow our daily activities on Facebook at: https://www.facebook.com/Mennonite-Centre-Ukraine-735361069838076/

WEEK 3 FIVE DAYS IN ZAP

It is Saturday morning and I am working on my blog.  I started off by reading my diary for the last week and it noted that last Sunday morning the first thing I did was check my emails to see if my previous blog had “blown up” on me in any way.  All was quiet on the western front and I could go enjoy my breakfast.  Not too sure about the eastern front.  There are a surprising number of readers of the blog from Ukraine and Russia. 

Our week was spent in Zaporozhe with our representative Olga Rubel looking at current and future projects.  We were going to spend the week staying at the Intourist Hotel but Olga persuaded us to do the Mennonite thing and stay at her place.  She even turned on the heat for our benefit.  Last time we were in Zaporozhye, the big issue every day was whether I should drive or she would be the driver.  Her husband, who has never driven, always made the decision.  I ended up driving a lot.  This time, her husband was never consulted on the issue and Olga drove every day.  I can confirm that she is a good driver but she still can’t park.  There is never any danger of her rubbing the tires on the curb as we never got closer than 3 feet.  After parking, the question was, could cars going down the road still get passed us?  If yes, then we left the car and went about our business.  In Olga’s defense I can say that she got her driver’s license about the same time as she started collecting her pension.  Many of us would lack the confidence for such a challenge at that age.

Our first visit was with Dr. Uri Reshetilov.  He is an enthusiastic supporter of our move into tele-medicine and wanted to celebrate our visit with a beautiful spread of food.  I sat there eating caviar on bread with cream cheese, wondering how I was going to explain the challenges of our work to the people back home.  I felt better when I noted that he only gave us red caviar and none of the expensive black variety.

Spread of Fruit and Caviar

Dr. Reshetilov Presenting Us With Original Painting of Dam in Zaporozhye

The Mennonite Centre has been a strong promoter of tele-medicine as a way of improving health care in the former Mennonite villages.  Most villages have what we would call a nurse-practitioner (called feldshers in Ukraine).  This is the front line of medical care.  They have limited abilities to diagnose illness and could often benefit from consulting with a doctor.  This would involve lengthy and costly travel for the patients.  With tele-medicine, the feldsher could consult with a doctor in Molochansk while the patient is still in the office.  We actually sat through such a consultation in Zaporozhye with Dr.  Reshetilov.  He was examining a patient who was at that moment in a doctor’s office in Molochansk.   We followed up with a conference call to a number of doctors and feldshers.  You can see all the individuals in the following picture.  We are in the lower right of the screen.  My face is black as I am holding up my camera and taking a shot of the live screen.

Live Picture of Tele-Medicine in Action

There are a number of Mennonite organizations operating in Ukraine and especially in the Zaporozhe area.  One of these is the Mennonite Family Centre.  It operates a personal care home for seniors.  Their manager is a local person by the name of Borys Letkeman.  He is a descendant of Mennonites who were exiled to the east during Soviet times.  He has returned to live in the area where his Mennonite ancestors once lived. 

Borys Letkeman with Seniors

When we arrived in his office, he told us of a phone call he had received that morning.  It was from a Mennonite church pastor in the village Balkavoya (called Fuerstenwerder in Mennonite times).  The pastor had a young mother in his office and she was destitute.  Her husband had recently abandoned her with 3 young children and they had nothing.  Borys referred to her as being “free of all encumbrances”.  This is not an area where Borys has any direct responsibility, but from the tears in his eyes, I could tell that he had done something to provide assistance.  It is beautiful to see the cooperation that exists between the various Mennonite agencies.

The Mennonite Centre has been active with an organization called Promitei.  It deals with handicapped or disadvantaged children.  In particular, it has worked very closely with children suffering from autism.  This disorder is not well understood in Ukraine, even by pediatricians.  Consequently children are often misdiagnosed.  Promitei would like to get children diagnosed very early and work with them to ensure that they are properly “socialized” - to directly quote the interpreter.  This is not some old political indoctrination from communist times but rather it expresses a desire to ensure the children properly develop their social skills.

Children Interacting With Staff

Promitei has recently moved from small downtown apartments to a large house further out in the suburbs.  The space is given to them rent free by a sympathetic orthodox priest.  Both our organization and the Mennonite Family Centre provide crucial financial support to operate the place.

New Building for Promitei Centre

When we first arrived at Promitei, their director Anjelica, was not present.  She arrived soon after and offered profuse apologies.  Her mother, who until now had been the prime care giver for their ailing father, had herself suffered a stroke.  Anjelica was now desperately trying to organize some home care.  Olga suggested that we contact Borys Letkeman as his organization had a program to provide home care.  Our Mennonite Centre cannot do everything and it is good to call on other agencies for important help.

Promitei class with Angelica on the Right

Next week Thursday, the Promitei centre is holding a major conference on autism.  Many pediatricians have been invited and they are also bringing in some experts from Kyiv.  The Mennonite Centre is sponsoring this conference in the hope of improving the ability of doctors to properly diagnose this disorder.  As we are the sponsoring organization, I was informed that I am listed as one of the speakers.  Wonder what I will say to the pediatricians.

If you wish to know more about the work of the Mennonite Centre, you can check out our web site at: http://www.mennonitecentre.ca/ or follow our daily activities on Facebook at: https://www.facebook.com/Mennonite-Centre-Ukraine-735361069838076/

WEEK 2 - THANKS OR NO THANKS

Yes it has been the Canadian Thanksgiving week and not a turkey in site on any tables in Ukraine.  We did celebrate a national holiday on Wednesday of this week but have no idea what we were celebrating.  We are used to not understanding everything that happens around us.  It is all part of working in a foreign environment.

The week started off on a strange note.  We came back from a meeting just as people were starting to assemble for the senior’s lunch at the Mennonite Centre. We provide 3 such lunches per week, on Tuesday, Friday and Sunday.  One couple immediately approached me and started talking in Russian.  When I indicated that I could not understand, they obliged me by speaking more slowly and loudly.  It still did not help.  I went inside to get Oksana, our manager, to be my interpreter.  They were not pleased to see her join the conversation.  It turned out they were trying to complain to me about one of her decisions.  They were requesting financial assistance in getting a second cataract surgery for the husband.  Our policy is to provide funding for only one surgery.  While we might make exceptions, it was felt with their 2 pensions that they could afford to pay for the operation themselves.  What intrigued me was their attitude - if you do not satisfy their request they will make a formal complaint to some official.  It turns out that I was the official.  This attitude is a carryover from Soviet times when complaints were constantly being made to local officials.   It was a way of life I would not like to encourage.  After making their formal protest to me and having their request denied, the couple went inside for a free lunch.  No complaints there - and also no thanks for any assistance received so far.

Later that day we drove to the former Mennonite village of Juschanlee.  It was the site of the estate owned by Johann Cornies – unofficially referred to as the Mennonite Czar.  He was a man of tremendous influence in the 19^th century and was responsible for the orderliness in establishing Mennonite villages as well as for many of the progressive agricultural practices on Mennonite farms. We were not on a historical tour but rather were going to visit Oksana Donets.  We met her in April 2014 after her mother came to the Mennonite Centre with a request for financial assistance.  It was a touching story.  Oksana had her hip injured as a young teenager while participating in some martial arts.  The injury was initially misdiagnosed, resulting in long term problems.  The original injury was aggravated 10 years ago when she was in a car accident while pregnant.  The hip had continued to deteriorate and doctors finally were recommending that she get a replacement.  By the time we saw her, she could no longer walk and was lying trapped in her mother’s second floor walk-up apartment.  The artificial hip would come from Germany and it cost $8,000 plus the cost of the surgery.  The family had applied everywhere for assistance and had always been turned down.  We were their last hope.

Oksana Donets and Her Daughter in Better Times

Oksana 18 Months Ago

The amount requested was well above the usual the usual amount that we provide for individual surgeries but the board agreed to post an appeal on Facebook.  This brought in over $5000 and the board approved the request for us to purchase the artificial hip with the family paying the cost of the surgery.  Mary and I were the lucky people to go back to Juschanlee and tell her the good news.  Mother and daughter both started crying at the news.  The mother hung onto Mary so hard when we left that I was not sure if Mary would be allowed to leave.  My final words to Oksana were that next time I see you I want to see you walking.

On our return to Ukraine this October we were curious as to what had happened.  We had heard some hints of complications but wanted to get a complete understanding of the situation for ourselves.  We returned to Juschanlee this week and were warmly received by the mother at the door.  When I went into their living room, Oksana was standing and started walking toward me.  She was smiling – something that we did not see last time.  Their story was difficult to hear.  After the purchase of the hip, Oksana was admitted to a hospital in Zaporozhye to prepare her for the operation.  The doctors were puzzled by her total inability to walk and performed an MRI.  They found a large tumour on her spine.  This tumour turned out to be benign, but it was the reason she could not walk.  This tumour was removed and she has been recuperating ever since.  She actually had to learn to walk again with the help of physical rehabilitation.  She still needs the hip replaced and is almost at the stage where this could happen.

Oksana Happy to be Standing and Walking

Oksana has had 12 surgeries in her lifetime and expressed some reluctance at enduring yet one more.  The family also had to borrow $2500 for the surgery to remove the tumour and receive the rehabilitation.  They do not know how they will finance the cost of the surgery for the hip replacement.  It will be difficult for them to move forward.  I encouraged them to stay in touch with Oksana Bratchenko, our manager as they plan their next move.

Despite the difficult situation they are in, Oksana Donets and her mother are extremely thankful to the Mennonite Centre for the assistance we provided.  Without the purchase of the hip, they would not have started the procedure that discovered the tumour.  After a short discussion, they had a party for us with food and refreshments.  They decorated the food with napkins printed like American $100 bills.  They asked us about Canada and our family at home.  When Oksana Donets heard that we had a couple of unmarried sons, she smiled quite broadly and expressed an interest in getting to know our family much better.  Her mother gave us many jars of canned produce as well as a large frozen chicken.  They were trying to find ways of saying thank you.  We know that they are thankful.

Food for the Party

Oksana Donets and Oksana Bratchenko (our manager)

If you wish to know more about the work of the Mennonite Centre, you can check out our web site at: http://www.mennonitecentre.ca/ or follow our daily activities on Facebook at: https://www.facebook.com/Mennonite-Centre-Ukraine-735361069838076/

WEEK 1 GATHERING WINTER'S FUEL

Mary and I arrived in Ukraine on Thursday October 8, after the usual tiring crossing of the Atlantic.  The trip thankfully was uneventful and we were met by our staff members Olga Rubel and Oksana Bratchenko.  Oksana is our manager in Molochansk (Halbstadt) and she drives the van for the Mennonite Centre.  When we left 17 months ago she was just starting to learn to drive and I was curious about her confidence level in driving.  After watching her speed along the highway at 120 km per hour, I quietly acknowledged that she was a fast learner and I slept most of the way to Molochansk. 

It is almost a 3 hour drive from the airport to Molochansk, and yes we were tired.

One time when I did wake up in our drive, I noticed an elderly man far out in the field pushing his bicycle.  He had collected a large bundle of sunflower stalks from a field that had just been harvested and was using his bicycle to get this large bundle home.  He was literally “gathering winter’s fuel”.  It was a good introduction to the current “hot” topic in Ukraine – how are we going to heat our homes this winter?

As an outsider, one is never sure of all the facts surrounding an issue in Ukraine. My understanding of the crisis is as follows.  The Ukrainian economy has been in free fall since the war with Russia started over a year ago.  During the last year, the Ukrainian government was forced to get some emergency loans from western European countries.  There were some conditions attached to these loans that forced major cost reductions on the Ukrainian government.  The government had been subsidizing the cost of natural gas for homes while requiring business establishments to pay the full cost.  This subsidy is now gone and home owners have to pay the full cost of the gas.  This has caused a seven fold increase in the cost of this product for home owners starting this fall.  It is understandably a shock to society and manifests itself in many ways.

According to an elderly friend of ours in Molochansk, she will have to pay 40% of her monthly pension to heat her house in the winter.  The weather has turned quite cool in Molochansk already with morning temperatures around the freezing mark.  Our friend refuses to turn on her gas furnace just yet and apologized to us for all the clothes she was wearing while trying to stay warm.  She goes to bed with a hot water bottle and spends the first couple hours in bed just trying to warm it up.  She had spent the last few days, tying up small bundles of branches she collected.  She can burn these in her kitchen (a separate building) and get some heat to boil water.  She also did not can any fruits or vegetables this fall as this would have consumed too much gas.

The Mennonite Centre has had an increasing number of projects in the Zaporozhye area and Mary and I are planning on spending more time in that city to get a better understanding of these initiatives.  Our representative in Zaporozhye is Olga Rubel and she invited us to stay at her house when we are in that city but warned us that the house will be cold.  She and her husband have agreed not to turn on the furnace until the frost starts to bite.  We have stayed with her very comfortably in the past but shall have to decide how adventurous we wish to be this fall.

When we arrived at our apartment in Molochansk on Thursday, it was nice and warm.  The staff had turned on the furnace for us as a test to make sure it was working.  With the help of some melatonin, we had a good night’s sleep and awoke in the morning in our cozy apartment to what looked like a beautiful sunny day.  Shortly after 9:00 AM, we walked over to the Mennonite Centre to meet the staff.  That was when we realized that the air was quite crisp and cool.  The staff greeted us warmly and then Ira, our cook, pointed at Mary’s feet and started shivering on her behalf. The weather had looked so pleasant in the morning that Mary had decided to wear sandals with no socks.  If we had woken up shivering in a cold apartment, there is no doubt that Mary would have been wearing more “sensible” shoes, as my mother would have said.

The basic result of all these concerns is that people are scrounging for alternate fuels.  If they have the capability of heating their homes with wood or coal, then these are being collected.  Many trees are being cut down illegally.  The Mennonite Centre recently cleared an unsightly hedge row in the back.  One of our staff requested to take home all the branches worth burning.  These were collected in the yard and will be transported to our employee’s house.  The Mennonite Centre has traditionally had a program to help people buy coal for home heating.  I suspect we may be getting some requests to assist in home heating with gas.

Mary with Branches Collected for Winter Heating

We are aware that this is the Thanksgiving Weekend in Canada.  We will miss the traditional family gathering for the turkey dinner.  Today (Saturday) we dropped by the local Mennonite Church in Molochansk where we will be worshipping tomorrow.  The place was decorated as if they are celebrating Thanksgiving.  We know a special event is planned.  I got a picture of the group that will be singing tomorrow in church.  We are looking forward to the service.

Thanksgiving Service in Molochansk