Shishur Sevay

I am asleep.  Ganga is asleep beside me, as usual.  My back hurts and I roll to my other side, leaving six inches between us.  Suddenly she begins to scream, and scream, and thrash.  I jump up to hold her and she is stiff, screaming.  I try to sing to her, to soothe her and she screams and now also sobs.  Others wake.  The light goes on.  Ganga screams in terror, looks to the corner as if something is coming from there.  She doesn’t seem to know who I am or where she is.  She pauses for a moment, looks at me, and screams more.  I pass her to one of the girls.  She still screams.  This goes on and on.  She thrusts out her tongue as she does when she is thirsty.  We talk to her.  She takes a sip of water.  She looks at me, terrified.  I feel helpless and frightened.  It has never been this bad before.  One of the girls takes her and walks around with her.  Ganga calms down.  She wants to come back to me.  I hold her.  We fall asleep.  It is 3 am.  This night is not over.  Twenty minutes later she is screaming again.  The look of terror on her face is so awful, painful, and yes, frightening to me.  Now I think of this as seizure of some sort.  I give her some Dilantin, Rani’s seizure medicine.  I don’t know if it really helps, but eventually we are asleep again.  In the morning she is smiling.  She goes off to school, as though nothing has happened.  I don’t know what she remembers.  She cannot speak.

I leave to have breakfast with a visitor and then take him to the airport.  On the way, talking about what happened in the night, it clicks.  This is flashback.  The picture comes together…. pieces always there, but not as PTSD.  Ganga wears a special locket given to her by the Imam at the Mazra where we took her once.  There an Imam does healing.  She loved going there, always arching her body towards the entrance as we approached.  He gave her special water, and the locket, and he blew softly on her face.  She is a wise child.  She understood.  But it hadn’t been so bad then, and for a while, a long time, she was fine.

PTSD, Post Traumatic Stress Disorder, most well known in relation to soldiers in war, soldiers who return from war but have flashbacks in which they believe or experience being back in the battlefield, in it again, terrified, trapped, and unable to re-join the present.  It happens in the day and in the night.  The episodes result from triggers, internal and external that evoke the fears, the memories, the terror, and the terror takes over.  They cannot escape.

Ganga does not take her eyes off me.  She used to cry if I got up in the night to go to the bathroom.  Once I even tried holding her at the same time.  Then I started waking her lightly to tell her I was going.  That worked well.  But that was just crying, and she was immediately soothed if a massi came to her, or when I came back.

The first time I went away, for three days, she ran a high fever.  Then she got used to it.  But always I told her.  One time she became very fussy, more clinging, and I couldn’t figure out why.  I was going to Bangladesh just for a day and coming back the same day.  But she had heard staff talking about my going.  Once I explained I was going and coming back, she calmed, stopped being clingy.  But always she is concerned about where I am.  She is hypervigilant.   When I went to the US for two weeks, I prepared her.  I practiced talking with her on the phone.  I would go in the other room and call on another phone and go G A N G A, GANGA!  She can’t speak, so I can only look for the ways she understands.  She did well.  I called every day.  She kept her eye on the phone and understood when I wasn’t on the phone.

Ganga’s attachment to me was always treated as a “trait” and people took delight in teasing her that I was going away.  It makes me furious, but I could not stop it.  It was done when I wasn’t looking.  On that trip when she ran a fever I left hearing her screaming because someone told her I wasn’t coming back.  I’ve never understood why people enjoy teasing in that way.  Here it was also a way of getting at me, of hurting where I was vulnerable, hurting the child who lived in terror of my disappearing.

It has been three years, four months, and one day since she came.  Normal “separation anxiety” should have gone away a long time ago.  But nothing for her is normal. 

Ganga’s History.  We don’t really know her history.  She is about 7-8 years old, by her teeth.  She has severe Cerebral Palsy.  When she came, at about four years, she was 8kg, and could not use any of her limbs, or lift her head.  She was totally limp.  I remember asking the physiotherapist if he thought she “knew” she had hands.  She had no reflexes, no grip.  But her eyes spoke and spoke.  She loved a Bengali movie about a father who wanted to give an elephant to his daughter.  She loved Charlie Chaplin.  She wanted to be in the classroom with the big girls.  When they went upstairs she cried, and when I picked her up to follow her eyes, she took me up to the classroom.  There she was happy.

Shishur Sevay is Ganga’s fourth home, that we know.  She has pierced ears, tiny holes that have since closed.  But that means she had a family.  She had a home where initially she was accepted, and her ears were pierced.  At some point she was moved to a hospital, but we don’t know when.  About six months before she came to us she was moved to Sukanya Home, the government institution for orphans, abandoned children.  And then she came here.  There could have been more homes in between. Ganga is an abandoned child, an aware one, a thinking one… and aside from abandonment, we don’t know what other traumas she had, and now experiences as flashbacks. Sometimes when I hold her she looks at me and just gets sad and begins to cry softly.  I think she is remembering.  I ask her and she seems to tell me yes.  My question soothes her.

I don’t remember how or when Ganga claimed me as hers.  In the beginning I slept with all four little ones nearby.  The others gradually started to sleep with the big girls.  Ganga stayed.  Often she would not fall asleep until I turned out my office light and came.  She would just lay in the dark waiting.  I told a friend about her once, about her hanging on to me, staking her claim on me, and my friend said, “Smart kid.”  But here it was also seen as a vulnerability.

Why Now?  Why was it so bad this time.  What were the triggers?  Looking back there were several.  There had been some teasing… that Mummy would punish her for something…  She’d had “accidents” which is extremely rare for her.  Regression, yet another symptiom of PTSD. And then there was the visitor coming and Ganga misinterpreted my telling her we were going to the airport.  When I have to leave, she comes to the airport to see me off, with the other kids and Gibi, and then comes to pick me up.  But this time we were going to pick up a visitor.  So when I told her the night before, she couldn’t get to sleep.  I wondered why.  Now I realize she thought I was leaving.  I took three big girls and Ganga and Bornali to pick up Ferdinand Rodricks, (http://www.HandicappedPeople.com)who was coming from Mumbai to design a way for Ganga (and eventually the others) to dance with the big girls.  When we started to go towards the gate to meet him she thrust herself towards me — and I held her.  She clung, and I suddenly realized she thought I was leaving.  I held her; I reassured her;  when later we got back in the car she was smiling and smiling; when we got home she was smiling even more.  Ganga was safe, until the night when the triggers and the fears came back and she was lost to the past, gripped by the demons of her history, cut off from the abundance of love that surrounds her at Shishur Sevay.

Maybe the visit itself was difficult because of all the attention to her, though she clearly loves attention.  Ganga loves to be with the girls when they are dancing.  She adores the dance teacher and lights up when he comes and takes her upstairs to class.  She studies the dance, concentrates, and when I ask if she wants to dance she says she does.  I have a vision of the four little ones dancing with my eight big ones, dancing with partial weight bearing support from above, twirling, twelve girls in groups of three.  So Ferdinand Rodricks came to help us.  He designs devices out of passion to help those with disabilities share experiences they usually miss.  His biggest area is in adapting all kinds of cars so those with disabilities can drive — any kind of cars.  Now he was here to share this vision of dance.  How was that for Ganga?  What did she feel, think?  We don’t know.

NAMING is a game changer.  I came home from seeing Ferdi off and hit the internet for PTSD and flashbacks.  There I found her “symptoms” of flashbacks, sleep disturbances, separation anxiety, startle.  STARTLE is interesting because I knew how easily she was startled and had adapted my behavior over the years so as not to startle her.  I never moved quickly around her.  I adapted without really naming it.  If I sat next to her I would get up slowly… no sudden motion or noise.  But of course everyone was aware that Ganga startled easily.  It just wasn’t named. Rage — a couple of times, after I got back from the US, she had been naughty and I scolded her.  She had started bubbling water out of her mouth.  It was class time.  I scolded her.  She went into terror/rage and stayed that way for hours, checking me.  I think that because of the CP, it is hard for her to modulate, or maybe because of the PTSD.  But for months after she continued to “test” the situation.  She would fixate on my face and start to bubble, and then actually react with the fear, waiting to see what happened.  Since admittedly she has control over me I would say, “Ganga I promised I would not scold you again for that.”  Scolding makes her feel like her world is coming to an end.  That doesn’t mean she can do what she wants.  I tell her and teachers tell her what she can or cannot do, but “scolding” has a different meaning, and tone.  I don’t do that.  Maybe one day i will be able to, or she will be able to tolerate it.  That can be a goal.

I had a long talk with Ganga after I put all this together, and told her what she has.  I named the PTSD.  I also told her I would not leave without telling her.  And then because she must also deal with reality, I told her that if anything happened to me, she would still be OK because of all the people who love her, and I named them each.  She was very serious.  I think she understood.

From the beginning I have wanted Ganga to be able to tell us what she is thinking.  I want to know.  I want her to know we know.  It’s been my frustration with much of the teaching in “special education” because that seems to be about what WE TELL the children, and not about listening to what they are trying to tell us.  When Rani went to school they would hold her hand and tap it on a drum.  At home, I discovered I could imitate what she tapped and she would suddenly look at me, with amazement, and tap back.  We connected.  I was listening and she knew she was being heard.  A key to her internal imprisonment had been unlocked, just a bit.  Rani has a lot to say.  So does Ganga…  And I want to know what they want to tell us.

I have been on the path of assistive technologies and augmentative communication.  There is a vast array of products and devices.  I have chosen already the symbol system I will use, Widgit, formerly Rebus.  I like it.  I can understand it.  The software just arrived from the UK.  I want the little ones taught in English because one day I hope to have teachers, volunteers from US or UK, people to take us further.  As for the devices, I think I will wait until August when I have to be in the US, and can look at different ones at the same time…. It’s hard to make these decisions online.

But back to Ganga and PTSD.  What is the therapy?  There really is no medicine and the flashbacks happen only once in a while.  Talking is the best therapy for this, awareness of triggers, prevention, and finding ways to desensitize.  I have to talk to her about startle, about her fear when I move quickly.  I really want to use the new system of communication, Widgit to write stories about loss, about trauma, about healing, and start to read them to her, and talk to her.  Then I want to find a way for her to make the stories, to point to what SHE wants to happen next, and how SHE feels reading the story.  The system has symbols and words so I hope to teach it to the big girls too, so they can read stories to and with the little ones.  My plate is full.  My cup runneth over.

I’ve been writing this over the course of the day.  I want to add pictures.  I also want to write of how the naming changes what we do.  I was standing next to her, and joked about “tiptoeing around the Princess” an acknowledgement of her startle reflex…The girls all needed shoes and I only wanted to take two at a time.  I took Rani and Sonali and told Ganga I would take her and Bornali another day.   It’s not about avoiding separation, but of building her capacity to manage separation.  The difference here is subtle but no one is making fun of her… rather just reassuring her.  Ganga’s terror has a name and so it is not funny anymore.  The NAME makes it “real” to people, though it was just as real before the name.  That is part of our culture though.  Naming defines what is real and what is “imaginary” or made up, or looking for attention, or any of the ways we tend to dismiss inconvenient feelings and vulnerability.

Ganga is serious about learning.

Ganga is a joyous child.

Until her demons of the night, or day, rob us from her and send her screaming into her past.