One Baby’s Heart and So Many Questions!

Talking it over with Seema Aunty

Talking it over with Seema Aunty

Tuni is her name, but I added “Harrison” as I do for the kids with disabilities who have no surnames.  Having a chart read, “Baby Tuni” is not as good as “Tuni Harrison.”

Tuni is about seven months and has Down Syndrome.  At about three months of age she was hospitalized in a government hospital about four hours from Kolkata.  I don’t have records of why she was hospitalized, but we were told her family never came back for her and never responded to calls from the hospital.  That district has no facilities for children with disabilities, and was one of the children the Child Welfare Committee pleaded with me to take.  We picked her up last week, on Friday, the 19th of July.  I knew in taking a child with Down there was a possibility she would have other medical problems including heart disease.

Today I took her to Medica Superspecialty Center to see the pediatrician for a check-up and to start whatever investigations were in order.  Tuni was a charmer.  Yes, she has heart disease.  She was seen by the pediatric cardiologist, the same one who saw Ganga in the past.  He did a brief echocardiogram, enough to see that she has a “complicated heart situation.”  Tomorrow I take Tuni back for  a more thorough testing under sedation.  And then we will talk… as the doctor put it.

So much goes through my mind. Is it fixable?  What will it cost?  How will we manage it all?   I dare to even think, should we do it?  And then I get mad at myself for even asking.  I think about her family.  Maybe this is why they abandoned her.  Maybe they couldn’t afford treatment.  Maybe a mother is mourning. Or, maybe it was just the Down Syndrome… but they did put her in the hospital.  I hold no judgments any more.  This is a harsh place with harsh realities.  You don’t take a child to a government hospital unless you have no other alternatives.

This work has changed me too.  I now more easily see the person separate from the illness.  When I hold her and talk to her, I ask her, “What happened to you, Little One?”

Looking worried... with reason.

Looking worried… with reason.

Good night from Kolkata at 12:50 am.  I need to get some sleep before the day begins.  Lots on my mind….

She Wasn’t an Orphan

I faced a hard decision.  The child we brought home from CWC on 24 September is not an orphan.  She has a mother, sisters, aunts, uncles,  and cousins.  As I had guessed, she was part of a community of beggars, thieves, and goondas.  The woman who brought her in was some sort of boss.  All of this has unfolded over the last several weeks.  The woman who had brought her to CWC called us almost daily, showed up unannounced, and the child mostly did not want to see her.  Over the next few weeks we learned that the child’s mother lived right next door to that woman, with her younger sister, and that “L”, our girl would take care of her mother in the day (maybe).  The mother was said to be mad, but L told us this was just so people would give her money.  L missed all of them, and missed the freedom of her life.  At the same time she also loved being here, enjoyed the other girls, and started to learn the alphabet.

So, what’s the problem?  First of all, I’ve been at this work for 12 years and I have a good idea of who I can help and who I cannot help.  I cannot help this child.   I can feed her, but I cannot change the direction of her life.  Ultimately she would not stay and ultimately the family/community would not leave her here.  As long as she wants to go home, she will not tolerate any of the discipline, self discipline, and work of being part of our life, family, home.  She will always be different.  I’ve seen it too often.  She has a place to go, not a great place, but she has family, people of her life, who she wants to be with.  She will never feel, “Amar barrie Shishur Sevay.” or “My home is Shishur Sevay.”

Second, I left the US, sold my home and took my savings to come here and do this work.  I want to care for orphans, the one’s who do not have what this child has.  The girls at Shishur Sevay are without choice.  The one girl who has a family still wants to join them.  She probably will when she is 18 in seven months.  India has a horrible problem of beggar children.  There even are laws against it, but they are ignored.  It’s a problem I cannot begin to address because it’s fueled by organized crime, police, politicians, the people who get paid off to do nothing.  It’s simply not what I sold my house for.

Third, my commitment to the girls here is really lifetime.  That’s what my money is for.  I stay here, miss my family in the US, including my grandchild, because I care for children who would not be OK without me.   I’m not willing to make that sacrifice for a child with alternatives.   My daughter and son-in-law in the US feel a commitment to our girls, but this one is not an orphan and does not belong here.

Fourth, it is not OK to have a home of orphans, children who unfortunately carry the “shame” of  that label, to have a child who is automatically “above” that label.  Whatever WE may think of L’s community, she is accepted there.  Our Shishur Sevay girls have NO PLACE they are accepted.  Our girl who will return to her family when she is 18 wants to be where she IS ACCEPTED.    Before taking L back, the girls and I talked, because for them also it was hard to have her leave.  But our girl who is almost 18 was clearest, ‘Mummy, she will be like me.  She will want to stay with her family.”

So we went, Gibi, Purba, Maggie, “L”, and me.  I had prepared a letter for CWC stating much of what I’ve written above.  I also had the original CWC Order giving her to us, which described her as an orphan.   I brought the government form for signing a child out of care.  We arrived to be met by an angry group of her relatives, fighting with each other and accusing us of keeping her in a bad place.  Gibi threatened to call the police for fraud.  I missed a lot of it as I took the child inside and Purba made sure we got ourselves on the appointment list.  Among the group were the woman who signed her in, the woman who said she was the child’s mother, the younger sister, a woman who said she was the community representative of some sort, and a couple of others.  They were there to reclaim their child.  They were angry with the woman who had “relinquished” her, and now said she was actually the grandmother and the woman said to be mad was her daughter.

I had prepared myself for this CWC meeting differently.  Bringing this child back was difficult.  I had to do this for the security of Shishur Sevay, and the protection of the other girls.  I took out my business card, kept it in front of me as a reminder, and tried to stay in the mode of being the lawyer for Shishur Sevay.  Shishur Sevay became my client.   The CWC woman whom I’ve known now for years, was very astute with these people and ended up saying she had no idea who was telling the truth, but since no one could prove they were even a relative, she couldn’t return the child to them.  She turned to me and said I’d have to keep her for now.  I said very calmly, “No, I don’t have to keep her.  This “Order” you wrote says she is an orphan and she is not.  This is your failure to find out.”  She agreed I was right.  Sitting at the long table was also someone from  CINI (Children In Need Institute), which is the largest organization working with these children.  The official said that CINI would take her.  This is actually very good because they will investigate and they will keep her in a shelter if they decide not to return her to those people.  They have staff, social workers, project and program directors, informants, investigators, and connections to high places.   A social worker came into the CWC meeting room and took “L”  back to the waiting area where she joined about 20 other children sitting on mats, also waiting to go to CINI.  “L” was tearful and another girl moved closer to comfort her.

Hundreds, thousands of children pass through this way.   That’s really where the label “SHAME” belongs.

Today I did what I had to for, Shishur Sevay.

The Case of Kairi Shepherd — Orders for Exile

Kairi Shepherd, pictured below at about five years, is scheduled for deportation.  Gibi, who founded Shishur Sevay with me and serves as our Vice President, was to have been Kairi’s older sister.  I had been trying for several years to locate the people Gibi had known in the US, and particularly the Shepherd family.  So when I saw the original article May 9th about Kairi’s deportation, I immediately recognized her name.  I read some of the posts written in the comments of that article, Googled a bit, found someone close to Kairi, and then reached Kairi, who also put me in touch with her lawyer.  At the same time a group ACT, against child trafficking, had started pressurizing the Indian government to deny travel papers, so Kairi could not be deported.  The current state is that the US and Indian Governments are looking for solutions.  There has been a groundswell of support for Kairi among the community of parents who have adopted children.  A team of lawyers is working pro bono in her support.  Kairi suffers from progressive multiple sclerosis.  If not for that, exile would be just a disaster in so many ways.  But with her ms, this could be a fatal disaster.

The single meeting allowed for Erlene and Kairi Shepherd with Gibi

http://www.indiaamericatoday.com/article/inside-story-lack-accountability-leaves-kairi-limbo#.T8bm95CvYxc.facebook

INSIDE STORY: Lack of accountability leaves Kairi in limbo

ARTICLE | MAY 31, 2012 – 9:01AM | BY DR. MICHELLE HARRISON

Gibi’s passport had the name Shepherd, because Erlene was to have adopted her/ Credit: Dr. Michelle Harrison

Kolkata – Kairi Abha Shepherd was adopted from India at three months of age and has no country to call home. She was abandoned at birth in a Kolkata nursing home and taken in by a Kolkata orphanage that has since closed. At three months of age she was sent to the United States for adoption by Erlene Shepherd, a widow with six other adopted children. Erlene died of metastatic breast cancer when Kairi was eight years old, but never filed the papers to make Kairi a US citizen.

Now under threat of deportation, Kairi, who suffers from rapidly progressing multiple sclerosis, is an orphan without a country. She is from India, but was not raised as an Indian. She was raised as an American, but is not American. Deportation is a sanitized word. The proper term is exile, the banishment of a person from his home, his country. Given Kairi’s progressive illness, it might be death in exile.

I am an American doctor settled in Kolkata since 2006, where I founded Shishur Sevay, a home for orphan girls, some with disabilities, who were rejected for adoption. I have a younger daughter adopted in 1984 from IMH (International Mission of Hope), the same orphanage as Kairi. I also have an older daughter, to whom I gave birth. Both are American citizens, one by birth, the other by naturalization. When my older daughter was born she was mine and the only papers I filled out were for her birth certificate.

For my Indian daughter the process was longer and more complicated than pregnancy. I carried a different responsibility. I had been entrusted with another mother’s child, to love and raise her as if she were of my body. She had already lost a mother and a family. I felt a special responsibility to be the forever family she had been promised. Everyone in the long chain of people, institutions, and governments had a special responsibility for this child, because at that moment in time, they were the only ones in a position to secure her future safety.

Kairi didn’t hop on a plane at three months of age and say, “Mom, I’m coming home. Meet me at the airport.” Her “line of possession” was from a nursing home in Kolkata, to International Mission of Hope, to an escort, to Erlene Shepherd, her forever mother. An agency from the US side, AIAA (Americans for International Aid and Adoption), had to do a home study and approve Erlene to adopt another child.

Those papers had to be approved by the Indian Embassy in Washington and the US Immigration Service, all before Erlene could be assigned as Kairi’s mother. Back in India, IMH had to show how they received the child, and then petition the Alipore Court to give guardianship to Erlene Shepherd.

The guardianship papers defined the responsibilities of Erlene Shepherd: “Your petitioner submits that she is a fit and proper person to be appointed guardian of the person of the said minor during her minority. Your petitioner further submits that it will be for the welfare of and manifestly advantageous to the said minor as regards her up-bringing, education and establishment in life, if the petitioner is appointed guardian of the said minor and the minor is permitted to be taken to and live with your petitioner in USA.” The guardianship by the government of India did not require adoption or citizenship.

A different government office issued an Indian passport so Kairi could travel, with Erlene’s name as her US contact. The American Consulate had to issue a visa for Kairi to enter the US. Once Kairi was in the US, she would have received permanent resident status (a green card), which she then would have had to relinquish when she received her naturalization papers.

What went wrong – falling through the cracks

International adoption occurs in the context of a government agreement between the sending and receiving countries. At the time of Kairi’s adoption, neither government required that the child become a citizen. In fact they did not even require that the child be legally adopted!

All the people and government officials involved in the process of obtaining the child, caring for her, sending her to the US, and approving the US family were paid for what they did, by salaries or fees. Once Kairi was in the US, no one had a financial interest in helping her to get her papers. There may have been concern, but it was not imperative.

The agency that approved Erlene did so even though she had not obtained citizenship for her other international adoptees. Erlene was also approved to adopt Gibi after Kairi’s adoption. They had a single meeting, with Kairi present, and then the adoption didn’t happen; but Gibi had gone to Denver with Erlene’s name on her passport, just as Kairi had. Today in Kolkata, Gibi is tearful, and says, “Kairi was supposed to be my little sister. Maybe if I had been there to take care of her, her life would have been better.”

Erlene, a single mother with seven children, was struggling financially and then became ill with cancer. The child services agency in Utah which looks after orphaned children did not notice that the children lacked citizenship.
The older siblings attempted to apply for Kairi’s papers when she was 16, but the US authorities did not let them, as they were not her parents.

By the time Kairi was an adult, her life had truly fallen apart. She was on drugs and was convicted of forgery for the purpose of getting drugs, but as a non-citizen, she was suddenly an “illegal alien headed for deportation.” She has been fighting this since 2007. The United States Child Citizenship Act of 2000 created a system of automatic citizenship for adopted children, but it was not retroactive to the time Kairi was born. She missed the deadline by months.

Hillary Clinton said, “It takes a village to raise a child.” First it takes a mother, and Kairi had lost two mothers by the time she was eight. Her mother didn’t obtain the citizenship papers, but the village also failed to notice. The same government that welcomed her at three months wants to send her back at age 30, because she committed a crime. Did any adoptive parent ever think that their children’s remaining in the US was anything other than unconditional, that if they broke the law, back they went? When we adopted, we were the ones on trial as to our worthiness of raising our children. For Kairi, who lost two mothers, the village absconded.

Kairi’s multiple sclerosis – the effects of exile

Kairi’s first symptoms of multiple sclerosis appeared when she was 18, and she was diagnosed at age 22. It has progressed rapidly. She has clear lesions of her brain, which are worse on each subsequent MRI. Without powerful and expensive medications, she will not be able to survive. With each crisis of her MS, she is hospitalized for infusions. Even worse, she cannot tolerate the heat. If Kairi is exiled, she will arrive in India without funds and without a destination. She could literally collapse as soon as she leaves the airport and end up in a hospital with no money and no way of communicating.

The US does not deport in a kindly way. A person is put on a plane with no possessions except travel documents and they are not even allowed to make a phone call. All the rights of Americans that are taken for granted are only for citizens. Kairi has no rights, not even to a phone call to say she is leaving. She was escorted to the US with fanfare, with people sending her off, with people waiting for her arrival. Yet there are no goodbyes, just a disappearance.

When I adopted from this orphanage, I sent ahead an outfit for my daughter to wear for her journey home. We all did that. Kairi went to the US in that special outfit her mother sent her. She will be returning in whatever she happens to be wearing at the time, with no one to meet her, to a country where she looks like she belongs, where people will expect her to respond as an Indian raised in India, but she will be alone, more alone than when her mother left her at the nursing home in Kolkata. Kairi left for America as a healthy infant. She will be returning as a very sick adult with an incurable disease and without any means of survival.

Where is the village now as she faces death in exile?

The US must face its responsibility to the orphaned children it accepted, which at the time was understood to be unconditionally. As an adoptive parent, I didn’t have a return policy. The Child Citizenship Act of 2000 was a good attempt to fix the problem, but it didn’t go back far enough. Kairi isn’t the only adoptee facing deportation.

Another Indian adoptee, Jennifer Hynes, was sent back to India, leaving two children and a husband in the US. She is begging to be able to return to the US to be with her children.

The law has to be fixed. The process of exiling these sons and daughters of Americans must be stopped. They may be “adoptees,” but they came to the US to be our sons and daughters, as if of our bodies. That is what we owe them.

About the Author

Dr. Michelle Harrison

Doctor, author, educator, and most importantly, mother, Dr. Michelle Harrison is a true visionary. She came to India in 2000, drawn by family connections having adopted from Kolkata in 1984. Over the next five years she returned to Kolkata often, sponsoring children in schools, putting toilets in villages and visiting many orphanages. She established Child life Preserve Shishur Sevay as a model of non-institutional care for orphan girls, some with disabilities, in response to asking herself, “What happens to the children who don’t get adopted?”

Ganga has PTSD

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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. GANGA-Sukanya-1520CRW 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.

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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.GangaComp_5186

Ganga is a joyous child.

Canga_4892CrW

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

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