Saturday, December 16, 2017

Ting Ministries: Special Needs Adoption as Child Hoarding - Background

I feel sick. 

I've been covering the Musser Family (two parents, 15 kids total; one adopted special need child who drowned in 2013 [Tommy], two living adopted special needs children [Katie age 15, Josie age 15], two biological children with special needs [Verity age 7, John Michael age 12], and 10 biological children: [Not available for 24-7 care-taking: Daniel age 22, Joshua age 20, Laura age 18; current full-time caretaker: Jane age 16; everyone else: Stephen age 9, Peter age 11,  James age 11, Ben age 4; Nathaniel 2] since a year after Tommy died.

Good on Laura for getting free of the last four years of full-time care-taking for Verity and assisting with Katie.  I'm sorry to say that Jane's now not being home-schooled as far as I can tell and has been co-opted into Laura's full-time caregiver position now that Laura has a job.    According to the previous pattern, Susanna's adoption itch should be getting pretty bad soon.  Expect a new kid to appear by first quarter of 2019 at the latest.

Through their craziness, I learned about another family - Brian and Stephanie Carpenter - who have no biological children and are working on adopting as many special needs kids as they can. 

Let's take a look at their current family in order of adoption:

1) Sasha - 20 years old.

  • Adopted from Ukraine at age 17 months with cerebral palsy (CP); in-country specialists stated that she had severe CP and would never be able to walk.
  • Medical outlook: She has mild CP which means she's fully mobile on her own; she's an excellent student at a local college.
  • Ministry Purpose: She has been told by her family since day one that "God saved you for a purpose."  Sounds sweet on the outside - but she's the main social media guru for her family's efforts to batch adopt kids on a yearly basis.  The family leads off with her story all_the_time which serves to minimize concerns that people have about medical reports on complicated special needs orphans - e.g., "Ukraine was so wrong about Sasha; I bet they're wrong about (insert name of orphan-du-jour)

3) Ellianna - around 13 years old

  • Adopted: from Taiwan in 2007 at age three with moderate CP and profound deafness.
  • Medical outlook: The Mussers blog implies that she's nonverbal, deaf and has severe CP (e.g., she cannot walk even with mobility aids).  Based on Ting Ministry's information and photos, a more realistic description is moderate CP, profoundly deaf with little intelligible speech- but fluent in ASL.  
  • Ministry Purpose: She's photogenic and capable of age-appropriate interaction with other human beings.  She serves as a handy model for what the family can accomplish.  
3)Avi (Avigayl)  - around 12 years old; functions at infant level.
  • Adopted: from the Philippines in 2009 at age 4.  Known diagnosis of severe cerebral palsy.
  • Medical outlook: Added diagnosis of scoliosis.  Has severe developmental lags so that she functions at the level of an infant; I don't know if that is from a preexisting genetic condition or she was so malnourished prior to adoption that her body had to metabolize her brain to stay alive.  Until now, I had assumed it was from malnutrition - but in the summer of 2017, Avi and her family got a Make-a-Wish trip.  Make-a-Wish only funds "progressive, degenerative,  or malignant disorders that are currently placing a child's life in jeopardy".   Severe scoliosis can be life-threatening (the treatment is some rough surgeries) - but I am very worried that Avi has an additional degenerative disorder.   She's still a tiny little thing compared to the growth of her other adopted sisters - even ones with similarly severe disabilities.
  • Ministry Purpose: She's lovely - and they don't update about her much.
4) Lina (Angelina) - around 10 years old; functions somewhere in the infant to toddler level.
  • Adopted: from the Plevin Orphanage in Bulgaria in 2012 at age 5.5.  No notes on any of the blogs about diagnoses prior to adoption - but she was critically malnourished and weighed 12 pound at 5 years of age.  (For reference, my 9 month old adjusted son weighs 18 pounds and is on the skinny side.)
  • Medical outlook: It all depends on how damaged her brain is from malnutrition.   She started walking this summer which is good for her body and makes care much easier.  Based on the amount of posts about the fact she's walking, I don't think she's had any other major breakthroughs in terms of cognitive development.
  • Ministry Purposes: Did you notice she's walking!  She's walking now!  She looks like a healthy kid in a few carefully chosen pictures prominently displayed!  Now, when you dig around on the site, the candid pictures show that she's easily distracted during family photos - like the fact she's pulling Ellianna's hair in this year's Christmas photo - but did I mention she's walking!  Everyone knows that physical development mirrors cognitive development perfectly......  
5) Olyvia - around 14 years old; probably functions at mobile infant level - but the blog doesn't mention her much..
  • Adopted from Plevin Orphanage in Bulgaria in 2012 at the age of 9 with her sister Rachele. Known diagnoses of spina bifida, cerebral palsy, autism, and severe, long-term malnutrition. 
  • Medical outlook:  Same outlook as Lina.  She learned to sit and hold her head up within two months of coming home from Plevin -  which is great! There have been no new updates on steps forward for her since then - which is sad, but shouldn't be unexpected.  
  • Ministry Purposes: They need one decent picture of her a year as an individual and one in the family Christmas picture.  Outside of that, she needs to stay under the  potential donors radar of how much work a nonverbal child who cannot walk takes on a day-to-day basis.  She can do this by looking in the general direction the camera and sitting independently in some photos.....
Have I mentioned I feel physically ill from writing about these poor kids?
6) Rachele - around 11 years old;  her functional age is of a newborn or less.
  • Adopted from Plevin Orphanage in Bulgaria in 2012 at the age of 6 with her sister Olyvia. Known diagnoses of cerebral palsy, epilepsy and long-term critical malnutrition.
  • Medical outlook:  Poor.  She grew 15 inches in her first year with the Carpenter family; that's the only update about Rachele so I am assuming she has severe cognitive impairments as well as physical impairments.  She will need extensive medical and daily living support for the rest of her life - which may be shortened by her inability to describe pain or discomfort to doctors.
  • Ministry Purposes:  She needs to look good in the family Christmas photo - and not do anything to draw people's attention to the fact that she's severely disabled.
7) Hannah (Annie) - around 15 years old.  
  • Adopted from China in 2016 at the age of nearly-14 with moderate cerebral palsy.  Any questions about how fair being placed in a home with four severely disabled sisters and one sister with disabilities who uses a form of sign language Annie's never seen were swept under the rug with "If she's not adopted by 14, she will NEVER be adopted!"  I really hoped the adoption fund-raising would fail for Annie's sake; it succeeded.
  • Medical outlook:  Pretty solid.  Based on photos, she's still wheelchair-dependent for long outings - but she may be using crutches or a walker for shorter distances at home.  Educationally, she graduated from 8th grade.  Assuming she's acquired English at an average rate, she's probably comfortable with conversational English by now.  The main educational issue is trying to make up any content area deficits with a teen who is still between 1.5-3 years away from developing  academic English while she receives intensive physical therapy (hopefully, she doesn't need any surgeries) AND before she reaches 21 years of age.  That's a lot to do in six years - and her family has 4 children who need full-time care plus her slightly younger sister who needs a lot of care now.
Once the Carpenters got Annie home, Sasha spear-headed a media blitz to raise $20,000 to refit their family home so that the girls could get around using their adaptive equipment.  Nothing says "good planning" like remembering that the kids can't move around the house until after you've adopted 6 kids who have major mobility issues; Susanna's always a bit more forth-right than the Carpenters......  (Added bonus in the linked Musser post: Susanna decides that she needs to explain to Josie - who has moderate CP herself - that Annie's moderate CP means that she can't get her body and mouth to do what her brain wants them to do - but Annie's still really smart.  Josie replied, "I get it."  I'm really curious what Josie was thinking during that interchange....and what she thinks of her adoptive mother.)

The fundraising bonanza failed; they raised around $7,000.

On a totally unrelated note, the Carpenter Family remembered in April of 2017 that there are two girls with some unspecified disabilities living in China the Carpenters want to adopt - if they can raise $45,000. 

After all, at some magic number of children, people will cough up the dough to get a house that the kids can live in comfortably - so let's keep racking up the kid count.

It's not like the Carpenters - and the Mussers if they wanted to - could fund-raise to help disabled kids in China instead of bringing them to the US into their overextended family.   No....that's too much disinterested generosity and too little praise for the Carpenters.

I feel sick.

9 comments:

  1. Dear God, those poor poor kids! This is insanity; how can the parents themselves not be completely overwhelmed??

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    1. They are completely overwhelmed. Ignore any protest to the contrary unless they can explain the current support network army of friends and family who can help them bridge the gap between whatever home health care services they have access to.

      Susanna Musser was swearing left and right that she and Joe had everything under control - right up until the moment Tommy drowned.

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    2. Good Lord, poor thing. I mean I don't get how the parents don't just collapse, or know enough to say "Enough" instead of adding more. I hope someone of authority takes action.

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    3. My belief is that there is a form of mental illness that underlies child hoarding. Some of it is being out-of-touch with reality; some of it is the emotional high that comes from the infatuation period of the "chase" of adoption. I suspect that perusing an international adoption of special needs children does bring some negative attention during the process - but I'll bet a lot of money they get more positive attention.

      To me the most telling feature is the timing of the next adoption after the previous adoption. The Mussers and Carpenters both adopt in waves that correspond pretty tightly with the point where the honeymoon period for the previous adoption has worn off and the sheer stress of adding a complicated-needs child to a family becomes clear.

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    4. Oh gosh, so those adoptions are like their drug. God help those children.

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  2. I actually knew someone like this, not quite that many kids, but not far off, she collects babies, and has a massive white saviour complex and keeps adopting little disabled kids. From what I hear their home is a deathtrap and the older kids have to fend for themselves.

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    1. Having the home become a deathtrap is a feature - not a bug - of adopting multiple children with complicated disabilities unless the parents have pre-built a house with accommodations in mind.

      The thing that drew me to the Mussers blog at first was that Susanna had all of her boys sharing a single bedroom with double bunks and a mattress on the floor underneath. That's a challenging setup for healthy kids - but it's a nightmare for a person with a mobility issue. I have mild CP and even as an adult I do better in open spaces; having to negotiate tight or clutter spaces means I start bumping things. Kids with moderate mobility issues like Katie, Tommy, Lina, Josie, and Annie take up even more room because of wheelchairs, crutches and adaptive equipment in the home. Kids who cannot walk and need supported sitting like Avi, Olivya, and Rachele take up the most space because every daily life activity needs adaptation.

      My son was medically complicated as an infant due to his premature birth from March to October of this year - although a walk in the park compared to some of the challenges these kids face. We have a two-story house - but only one oxygen concentrator. Jack lived in the "dining room" area of our old farmhouse that some deluded soul tried to make into an open-plan living space. I spent so much time figuring out how to fit his concentrator, emergency tanks, back-up tanks, oxygen-related supplies, NG tube related supplies, and all of the normal baby junk that babies come with into a home that's around 800 square-feet when the upstairs is off-limits. Plus, we had four competent adults (my husband, my mom, my dad and me) to work out the care of ONE child. Just one. Not 3 high-needs kids plus 10 others or 4 high needs kids plus 2 medium-need kids.

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  3. The Mussers, if I had to guess, never really coped with Tommy's death and started adopting more as a way to assuage their grief and guilt (the latter which they also never fully coped with, since they failed to ever admit that sheer overload is what did it).

    The Carpenters? I lack much if any sympathy or compassion for them. They had success with the first 2 kids and are now convinced it will work with however many more they accumulate, come hell or high water.

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    1. It's something that boggles my mind. I'm not opposed to adoption of medically complicated children at all - but many families can barely handle one kid with lots of needs. Adding more and more and more - the adults will not meet their own personal needs and eventually the kids will suffer. Not from direct abuse or neglect per se - but there is a lot of ad-libbing, phone calling and experimenting that goes on to make things work with medically complicated kids. You don't have time to do that when you have 4 medically complicated kids like the Carpenters or 1 kid with Down Syndrome, two medically complicated kids and a house-filled with home schooled kids.

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