The Story – Chapter 1

I feel that it is time to tell the story …

Once upon a time, an 11 year old girl read a book. A single sentence spoke about an occupational therapist helping children who had lost their limbs in a tragic accident. Her heart beat in her chest, and she knew … this is something worth my life. She convinced her father to let her apply for OT, rather than engineering. Day one, sitting in the class, dreaming of starting occupational therapy in foreign lands, a slide popped up, showing all the countries of the world that already had OT. She felt shattered. The whole world already had OT. This dream of starting OT in a foreign land was not meant to be. That was 1998.

11 years later friends of mine moved to Madagascar to take over the leadership of a church, and I felt the stirrings of God. I landed in a teaching position, with 2 years of delightful 3rd graders, settling on an island which I truly hated at that time. Yes, hate is a strong word. And yes, I hated being in Madagascar. The culture shock, coming from South Africa, was incredible. I could not understand people’s ways of not saying things, or of using words conveying one verbal queue to give a completely other message. (You have to live here to understand it).

I got to the end of my first two years here, many a faithful friend telling me to leave, and move to a place I would be happy in, “because God wants us to be happy”, and found myself at a dreadful standstill. I hated Madagascar. And had no sense of God moving me on to something else. I cried out to Him, “Lord, I have no skills. I have nothing to give. The only thing in my hands is occupational therapy. What must I do with it?”

I had two options in front of me, starting a private practice, or returning to that shattered dream of 1998, starting Occupational Therapy in a country where it does not yet exist.

 

 

All of scooters and none of therapy

I am grasping for words to paint a picture of my day : capturing for you the rice fields, the smoke, the compacted mass of bodies and humanity; the process of swerving sideways and dodging potholes, cows, people, busses, scooters, bicycles, pull-carts, ladies in 4×4’s and the all-sorts of other pop-ups that frequent the city roads. I cannot! This is Tana. And there is no way to capture it. Only to live and experience it.

Of course today, migraine pounding, my scooter gets stuck next to the road without petrol. I am tempted to defend myself! … With good reason … but I shall prevail and resist the temptation. Luck has it that is splutters, stutters and stops right next to a mechanic shop, where I promptly borrow an empty 2l coke bottle and head off, strolling the 1.5 km to the nearest gas station. It is a non-taxi day. Not because I am eager, fit, or full of energy. No, I am looking for them! Searching for them! Scanning the traffic both ways. (Remember the migraine). None in sight.

I finally get one about 300m form the gas station I do get hold of one, and jump in. Thank goodness for that move, because alas! the gas station is (also) out of juice. Yes, no kidding. So, the taxi driver and I, engaged in an animated conversation, continue our search, find a gas station, borrow a jerry-can from another taxi, fill the jerry-can, pour the petrol form the jerry-can to the coke bottle and head back to the mechanic shop.

After filling up the scooter, I pull it over onto its left side, manually filling up the carburetor for an start … And right there it is, that moment that made this day a treat. The two mechanics watch me. One shakes his head, points to me, and says to his friend : “This one here, she is not a vazah.”  Well, I couldn’t agree more! Whether it was the stuck without gas, the carburetor trick or the combo I don’t know. It does not matter. I am happily LOCAL, (despite the fact that the red sun-burnt skin disputes the fact).

(Vazah = (white) foreigner).

 

 

I AM HERE!

Monday is therapy disaster day! It happens occasionally. Or, to be more truthful, ever so often. The reasons differ, in creative explosions of chaos, but the results are always the same. ADAPTATION. I am an OT, and adaptation should be my middle name. But, if adaptation is my middle name, control freak is my surname.

As disaster day will have it, the keys to the OT room at the rehabilitation hospital is M.I.A. Being Monday, and the beginning of the week, all the therapy rooms are jam packed, and I get myself, my therapy assistant, and the second year OT student seriously in the way of the physiotherapists, trying to sneak into their rooms and steal their space to treat the 8 clients waiting for OT. Smile. Sorry. Smile again! Oops.

There is nothing! Nada! Niks! to use for therapy with the kids, and with the student watching her “madame” I am needing to pull out all the creative stops. But then a new little guy with cerebral palsy comes into the room, and all is well with the world again. His name is Livatiana. Liewe (pronounced similarly) is rooted in the word loved in my language, Afrikaans. Tiana, rooted in the word loved in Malagasy. In that moment chaos moves aside. If this is not a sign of God’s special love, then what is?

The rest of the day is a creative explosion. A tight fitting creative explosion, trying to mobilize spastic limbs while squeezed into a 50cm space between two hospital beds, but none the less a creative explosion. What else is one to do with “nothing” as  resource! A piece of paper, scooter helmet, stick and bed transformed into driving bus, avoid crashing a scooter into various life stock, and the accidental death of a fresh water cray fish while digging in the rice field. Even though most of the CP (cerebral palsy) kids on Monday were non-verbal, we cried with laughter and shared joy, as “nothing” turned into a hoot of a therapy session. Each session echoed the catch-phrase of World CP Day. I AM HERE! From Livatiana who is doubly loved, to the other children waiting in anticipation for what would happen next in our creative games. There were there. 100% THERE. And we were together. 100% TOGETHER. And that made all the difference.

 

 

 

 

 

 

LETTERS FROM PARENTS

14 May 2014

Madam/Sir,

To you who read this letter.

I would like to greet you and wish you well. I am Andry’s mom. I put my address at the bottom in case you need it.

Andry: 25 years old.

He has had epilepsy from time to time since he was 18 months old. But because of God’s love and forgiveness, his health has shown improvements. He began to take medicine every day when he was 19 years old and then stopped taking it six years ago. He is learning now. The occupational therapist is responsible for his treatment at the CSB II (Ambohidroa-East-Ambohidratrimo). He began to work with her in September 2013.

                At that time his hands were still very stiff. When he saw a stranger’s face he made funny face and closed his mouth. When we washed him, he hit and bit us. He didn’t want to eat for a long time; and did not sleep during the day nor at night. He often fell down and got hurt and consequently we always had to go to the doctor often.

                Now his mind begins to open. He can grab things. He can put food in his mouth. He begins to be friendly. We can talk to him. He can play ball (“pasy pasy”), play with small cars, and drink water from a cup. His face that used to be an expression of sadness is now glowing and happy. He can eat well and also sleeps well.

He seldom has epileptic seizures. He also received a wheelchair and it helped him to feel better.

I want to thank God because I trust in my Lord Jesus. Everything is possible with him. He sent the occupational therapist to look after the disabled people, so I wish the best for her, to have strength and to be healthy so that she can accomplish the mission that needs her.

Doing the exercises and following the advice she gave, were the important things that brought improvement to Andry.

Thank you for listening and reading this letter. I wish the best also for you.

“To God only be the glory”

Thank you,

Sylvanna

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BEING A FOOL

Woman, truly, thou art an idealistic fool! On the days I question my sanity, my being here, and the activities I find myself heading up, I often end at that conclusion. Last week was one of those weeks!

But, I am not here because of me. I am here because of God. Because He called me. Many days I ask Him, “Why?” “Why me?”. I do get an answer, but not one of those readily packaged feel good ones. “Because I chose you.” That is God! Not a false answer of how worthy I am – which I am not. Not a false answer of how perfect I am for the assignment – which I am not. Not an answer about any of my own “deserving” – because I do not. Not an answer about how much He loves me and this will be good for me – He does love me, this is good for me, but life is ever so slightly bigger than me. His answer is rooted in Him.

He is God. He can choose to do things that make absolutely no sense on a logic-tally-sheet. He can choose to do things to reveal Himself, His glory, His might and power, His mercy …  to who … to a lost and desperate world … each and every one of us.

As I think over this week, I am certain I am at the right place. Yes I am a fool. A fool for Christ! Humbled by Christ! A servant of Christ! In isolation every single one of the things that happened this week would be worth me being here, because they are testimonies of hope and life restored. But sewn together into a single week these stories are a beaming light that reflects the glory of Him who is over it all!

On Monday a group of workers from various orphanage and child care centres attended a training on early childhood development with us. It is a monthly event. One lady said: “Before the caregivers in our centre were just doing there jobs, going through their daily routine. But now they want to help the children develop. They are changing.”

On Tuesday a lovely almost 1-year old boy who was born without limbs made his first steps towards crawling! With a bit of help he managed to pull his body forwards. It will still take some time, but he is on his way there.

On Wednesday the mom of a 26 year old young man came to us with a beaming smile. Previously he had no interest in anything, and he would often display negative behaviours like biting. Not only has the negative behaviour stopped, but he was able to look at a toy car and start playing appropriately with it for the first time in his life.

Today the mom of a teenage girl who is blind came to tell us that where previously her daughter could do nothing and wanted to do nothing, she is now beginning to sweep the house, wash laundry, cut beans, pour water to drink, dress herself … 

Also today we were met by a very happy mom who’s little 2-year old rediscovered her personality. For 6 months this little one was locked inside herself, in a disabled body, after TB meningitis. She could not move. Not even her head. Today she was sitting up all by herself. But not only was she sitting … she started smiling again, for the first time after 6 months.

1 Corinthians 1:25
For the foolishness of God is wiser than human wisdom, and the weakness of God is stronger than human strength.

How amazing is our miracle working God!

http://marie-ot-antananarivo.blogspot.com/2013_10_01_archive.html

http://marie-ot-antananarivo.blogspot.com/2013_10_01_archive.html

Marie, a lovely French student that is working with us for two months is keeping a blog of her experiences. A lovely read!

The Wheelchair Question

I never know the answer.

The question is simple: Are wheelchairs appropriate intervention in Africa?

 

One of the places I work every now and again is a community based clinic. A young 24year old man with cerebral palsy lives near there. In theory he needs a wheelchair.

Today the team from the centre went to his home to evaluate the adapted cushioning on the chair. The 1km walk from the clinic to the house was an up-and-down affair. The wheels of the chair got stuck on bushes, and it buckled a couple of times as it hit potholes, and that on the main road.

The downhill slope to the house was thin, sandy and windy, toppling the wheelchair onto its side (luckily with no passenger inside). The last stretch of slope was the same width as the chair, and we broke down branches as we descended.

Finally, at the house, we were faced with uneven steps, the one easy thing to remedy, as it is not all that difficult to build a cement ramp.

We can give the man a wheelchair, and he would gain all of 10m of mobility. From his house to his garden and back in again. But the chair would enable his mom to leave him at home in the care of his siblings, enabling her to work. And being able to go into the garden would make him more part of the community, as he will be outside more often.

And so, that is part of my debates with myself about the question of wheelchairs in Africa …

THEN SINGS MY SOUL …

 

God has this habit of capturing our attention and drawing us to Him. He does it in ways that might not always make sense to the rest of the world, but is so intensely personal that we cannot but worship Him. We get to love Him and experience His love because of His acts of grace in our lives. Grace undeserved. Grace that makes me want to stand on the top of a mountain and belt out: “HOW GREAT THOU ART, HOW GREAT THOU ART!”

Today, after months and months of knocking on office doors, I stand with a certificate in my hand and tears in my eyes. Occupational therapy is now officially registered under the nursing order of Madagascar, which makes me licensed to practise. Driving home, 3 hours after getting the certificate, it hit me: I am the first ever occupational therapist to be certified to practise in Madagascar. Wow. How great is our God.

From now onwards all occupational therapists who come work here can be officially licensed and registered, a process that should not take more than a few hours. And so, on this day, 7 August 2013, at 17:20 the doors to occupational therapy in Madagascar has swung wide open.

This all has happened right before the Occupational Therapy African Regional Group Congress in Zimbabwe, which is 19 August. Talk about God’s perfect timing.

This week has also held the first meeting of defining the scope of occupational therapy in Madagascar, on Monday, 5 August, but more on that later.

This is the first “official” Madagascar OT logging off and going to bed with a very happy heart, singing His praises.

NO-ONE TOLD ME BEFORE THAT I CAN HELP MY CHILD

“While cerebral palsy (pronounced seh-ree-brel pawl-zee) is a blanket term commonly referred to as “CP” and described by loss or impairment of motor function, cerebral palsy is actually caused by brain damage. The brain damage is caused by brain injury or abnormal development of the brain that occurs while a child’s brain is still developing — before birth, during birth, or immediately after birth.

Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor functioning.” http://cerebralpalsy.org/

Hambisela, a program for training parents of children with cerebral palsy, kindly allows us to use their material in Madagascar. It is a great blessing, as the context is very similar to that of South Africa, and the information practical.

 

During the recent Mahajanga trip with common ground church we again got to train parents using this program. It was both wonderful and sad. The first session, “What is Cerebral Palsy?”, ended in great tension. Parents expected a “foreign specialist” to come, (i.e. a doctor), who would “treat” their children,(i.e. give medicine that would cure their children). The only option was to repeat the truth: cerebral palsy cannot be cured by medicine. Therapy can help children with cerebral palsy overcome many of their difficulties, but it cannot cure the condition.

 

In the context where I work parents are often told their child with cerebral palsy will grow up to be without a disability. This is heart-breaking as one sees teenagers with severe deformities, their parents still expressing the hope that the child will be “normal by the time he is 18”.

 

After the first heart-breaking day I was uncertain how the rest of the week’s sessions would go. Not all the parents who attended the first session came back to the second and third session, but those who did return quickly became a close-knit group. Together with the group of parents and the outreach group from the church we explored positioning, mobility, eating, talking and self-care activities.

 

At the end of the third day the parents agreed to come to the hospital on the same day for their follow-up visits, starting an informal support group.

 

However, greater that the unity in the group, greater than the future support group, was the thank-you address by one of the parents. “Thank you,” he said. “We never knew that we as parents are able to help our children ourselves. Now we know.”

This is my prayer … that in the hearts of the parents this realization will continue to settle: That God has given their children to them, and with that gift He has also given them the ability to care for them well.

A Matter Of Perspective: Having a child with autism in Madagascar

“Autism is a disorder of neural development characterized by impaired social interaction and verbal and non-verbal communication, and by restricted, repetitive or stereotyped behavior. The diagnostic criteria require that symptoms become apparent before a child is three years old.^[2] Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize; how this occurs is not well understood.^[3] ” (Thank you Wikipedia!)

 

I have a behavioural checklist that I use as a starting point whenever I suspect a diagnosis of Autism. Now, I am not a doctor, and not allowed to diagnose, but asking the right questions helps with correct referral. Except, here in Madagascar there are not many specialist with experience in Autism, and there can be a giant time-gap between asking the right questions and making the referral, to the child officially being diagnosed.

My checklist includes some of these questions:

• Is your child different from other children?
• Is your child motivated to build relationships?
• Does your child make eye-contact?
• Does your child point at objects, or rather pull you by the hand to get an object of choice?
• Does your child have strange, repetitive movement behaviour, such as running around in a circle?
• Does your child seem strangely interested in moving objects, such as a fan spinning, leaves blowing, or playing with his own fingers?
• Does your child often make strange sounds?

Last week in Mahajanga on the west-coast I sat across the table from a mother, again asking these questions. It never gets easier, starting a conversation with “I suspect that your child  have autism, but we will have to let a doctor confirm the diagnosis.”

She frowned, and I began to explain Autism in the most simple language I can find, using many behavioural examples. As I explain I wait for the shock and unbelief to register on her face. Instead she started smiling; the further I got into the explanation, the bigger her smile. At the end (perplexed) I asked her if she understood everything, before I suggested activities and approaches to use at home.

Her reply still has me in tears. “Thank you! Thank you so much! I have waited years to have an explanation. I have visited so many doctors, and the only answer they could give me was that they don’t know what my son has. But the explanation you gave fits him perfectly. I am certain that he has Autism. Thank you so much for giving it a name.”

She got up to leave, and I called her back. “Don’t you want to know what you can do to help him develop?” She sits down to discuss some behavioural approaches with me, but not before she says, “I came looking for an answer, and today I got an answer. That is already more than I hoped for.”

The need for training in the management of Autism in Madagascar is great. Doctors, both generalists and specialists need to be equipped to recognise, identify and diagnose autistic spectrum disorders correctly. There is very little available in terms of schooling, parent counselling or therapeutic intervention.

That single conversation changed my perspective so much, making me realise again the immense need to simply be able to give a diagnosis, explaining to a mom her child’s unusual behaviour.