How freaking crazy can you be? No, seriously.
Lots of people dream of living a completely debt-free life. In the absence of being independently wealthy, most people decide to manage debt responsibly by restricting debt to secured debt like loans to purchase a new or used car or a house, debt that raises the income of the person like educational debt and limiting the amount of unsecured debt like credit cards. On a more personal level, people committed to living debt free chose to delay child-bearing until one or both people are in secure careers and often choose to limit their family size. Homes are quite expensive and large families cost more money.
On the other hand, a lot of CP/QF large families live in poverty while idolizing families who live in even more extreme circumstances. A common lament of huge CP/QF families where the mother is reaching the end of her reproductive years is that domestic foster care and adoption has ridiculous requirements like that prospective adoptive families who will be adopting unrelated children can show income over the federal poverty level for their new family size. For new readers, the federal poverty income guidelines in the US are agreed to be absurdly low by people who work in poverty prevention. A good rule of thumb is that most families need at least 200% of the poverty guidelines to live a frugal middle class life - so the US poverty guideline of $20,730 for a family of three should be closer to $42,000. To size this up to QF families, Kimberly at Raising Olives used to complain that their family of 12 kids and two adults couldn't adopt domestically because the family lived on less than $72,620 per year.
Back in 2005, Amy at Raising Arrows wrote a blog post about a family she idolized who had nine kids living in a garage for one year so they could build the home of their dreams. In 2018, I wrote my response to the major reasons I could think of why living in a garage is probably illegal; my more obvious concerns were a lack of exits, too little area of windows, too little square footage per person, infestation prevention issues and the fact that the taxable value of the land is affected by having a second dwelling onsite. It turns out that Amy managed to get a hold of that family and write a follow-up in 2017; I'll refrain from guessing as to why it took 12 years to catch up with them.
Turns out some of my unspoken assumptions were just plain wrong. Silly me - I assumed that living in the garage would start when the family had all of the money set aside to build the house so that the time living in the outbuilding would be limited to a single building season. Oh, boy, was I naive! FIVE YEARS! The family lived in a garage for 5 freaking years!
I'm still shocked and horrified - so I guess I'll start with the size of the garage. The family says that the garage was 24' by 30' and at least partially built to purpose for living in. The square footage is 720 square feet. Now, the 1986 guidelines for safe living spaces stated that the minimum square footage could be calculated by 150 + 100(n-1) so a family of nine would need 150 + 100(8) or 950 square feet minimum.
Now, if I was living in a garage, I would be on like 5 forms of birth control - including "we're not having sex until we get a real house or apartment" followed by 4 other forms. Apparently, I'm crazy because the family happily admits that two children were conceived and born while living in the garage. That pushes the minimum square footage to 1150 feet - but I'm more horrified at the idea of adding two newborns sequentially to a garage home. The family mentions that the time they lived in the garage was extended because of unexpected building costs and high medical bills. I wonder how much of those medical bills were due to two labor and deliveries; childbirth is expensive even when everything goes perfectly.
In terms of exits, the garage did have two external doors that were not garage doors. Assuming the drawing provided by the family was reasonably accurate, the garage was not compliant in terms of emergency window egresses from the bedrooms. Personally, I'd be very worried about exiting from the kids' bedroom in case of a fire. There was one small window, an internal exit towards the main area of the garage and an external exit across the room where the washer, dryer and hot water heater were located. If anything happened involving the washer, dryer or hot water heater, the kids' fastest exit would be compromised.
Speaking of the garage doors, the "front" of the garage included a large standard garage door. This threw me a bit at first; why would a family waste that much wall space on a garage door when they were making plans like building 10 foot ceilings on the garage to make it a workable future temporary home? Then I remembered - the local tax authority would notice in real time if a family wanted to build a second home on a plot. Silly me and my beliefs about obeying civil codes and taxation.
Really, the author of post sums it up better than I can. The 5+ years of living in the garage are great in hindsight. Looking back at my life, I have a lot of memories that are far more fun in hindsight than they were at the time. After all, memories allow me to enjoy the fun, exciting or satisfying bits without reliving the pain, frustration or tedium. For example, I chaperoned a group of teens on a mission trip to Beaver Island when I was around 26. I had lots of fun on the trip - but I also broke my tailbone early in the trip, one of the other chaperones was having what I can only describe as an untreated manic episode, and I was going on slightly less than 5 hours of sleep a night for over a week. My memories are of teaching my small group to pain sets and watching sunsets over the lake - not the pain of hiking miles each day with a light pack with a broken tailbone.
Be cautious of taking advice from people who enjoyed an experience only in hindsight.
A science teacher working with at-risk teenagers moves to her husband's dairy farm in the country. Life lessons galore
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Showing posts with label international adoption. Show all posts
Showing posts with label international adoption. Show all posts
Tuesday, October 16, 2018
Monday, January 22, 2018
Adoption Issues: What Not to Do for ANY Children
I was bumbling around on various home schooling blogs and stumbled upon Melissa Corkum's blog at The Cork Board while learning a bit about the classical method of home schooling.
Despite researching home schooling issues for several years, I'm still surprised at the number of home schooling parents who branch out into questionable choices in international adoption.
The Corkum family has six kids. They had two biological children, then adopted "Tee" when he was about 2 years old in 2009. (Her blog uses names for the kids which I assume are pseudonyms - but since I am unsure - I'm just going to use initials.) Tee's adoption is a good example of how international adoption can be beneficial. Melissa was adopted as an infant from Korea - which is where Tee is adopted from - so she has experience of being Asian-American in the USA as well as being adopted. Tee was the youngest child when adopted in. It took Tee several years to fully feel comfortable in his new home and he eventually received an additional diagnosis of Fetal Alcohol Syndrome Disorders (FASD). Tee seems to have academic struggles - but Melissa is actively involved in creating a classical curriculum that combines weekly planned co-op lessons with reinforcement at home. IOW, Tee's adoption seems to have worked out well.
By 2011, the family was in a good groove. At that point, the Corkums decided to adopt again but from Ethiopia instead. They were open to matching up to three adoptees with no restrictions on gender, relation, or age of the kids. They were matched with two unrelated kids: a 14-year old boy named "Jay" and a 13-year old girl named "Kay". On top of being unrelated to each other, Jay and Kay are substantially older than the Corkum's biological children and Tee. While finalizing Jay's adoption in Ethiopia, the Corkums find out that Jay was being raised with another orphan: 11-year old "Gee". The Corkums decide to adopt Gee to keep Jay and Gee together. In a post, Melissa mentions obliquely that at that point the adoption agency informed Melissa and her husband that adopting three unrelated teenagers is not recommended - but the adoption of Gee proceeds.
Long story short: Jay and Kay have troubles settling into a home-schooling family that doesn't speak the same language in a foreign country. Gee struggles even more and eventually needs in-patient treatment. By 2016, the kids are 18, 17, and 15 and none of them are living with the Corkums.
In 2014, Melissa wrote a post titled "What Not To Do In Older Child Adoption" that lists four mistakes the Corkums made that I feel safe broadening to "Don't Do For ANY Children" based on my years of teaching scads of unaccompanied minors, teenage refugees and kids in foster care kids as well as garden-variety teenagers.
Perhaps the parents could focus more on the positives about Ethiopia (and there are a lot) and leave the attitude of American superiority behind.
I live in a rural area that smells like diesel mixed with either cow manure, pig manure or turkey manure depending on which way the wind blows. The area I grew up in smelled like gasoline fumes mixed with stale fast-food or industrial machinery depending on which way the wind blew. The places I like to vacation smell mostly like rotting fresh water plants, dead leaves, and the occasional whiff of animal urine. It's all about perspective - and what you are used to.
Is it so crazy that eating ice in Ethiopia might cause tonsillitis - or at least one hell of a sore throat? Let's say the health teacher was completely wrong. We have people in the US who believe that homeopathy works, taking colloidal silver during pregnancy reduces morning sickness, and that psychological struggles by adopted children can be cured by forced hugging. Go to a public place in the US and ask 30 people why Michael Jackson's skin turned from brown to white. How many different answers do you'll think I'd get and what percentage would be correct? Plus, these kids spent most of their lives speaking a different language and have only been immersed in English for 20 months at this point. I can only imagine what kind of a mess I would make if I had to explain how a vaccine works in Amheric or Oromo - even with 20 months immersion.
This next one freaks me out in terms of inappropriate bashing of a teenager:
A real benefit to home schooling that I believe in is that parent-teachers can meet their kids where they are functioning and help them move forward to the next level. Nearly every home schooling parent blog has at least post about how public schools are failing to meet their child exactly where they are at. (Ironically - so does Melissa. It's in reference to one of the adopted kids no less - but that's another blog post.) When confronted with having to practice that level of adaption her home school, she decides to tell her teens how badly are doing compared to other teens their age to shame them into working harder. That's unacceptable behavior for a teacher in a public school - and so much more hurtful when the teacher is also your adopted mother.
This last one made me laugh. Melissa has spent a lot of time around home schooled teens - but maybe not so much the average teenager at home before adopting her teens.
I need to thank my parents again for ignoring and overlooking "attitude" body language. Teenagers need some way to blow off the emotional energy created by every teen's beliefs that 1) their parents are overbearing and obnoxious, 2) no one understand them, and 3) life will be so much better once they are out of the house. I'm willing to bet the teens knew that their body language was angry, grumpy, bored or checked-out; those types of body language are pretty universal. What is equally important is that the parents -and teachers - pick their battles wisely. I could care less if a student was slouched in their desk or spent the whole hour glaring at me - that's their choice and it's not hurting me or anyone else.
I agree battling over body language was pointless and counter-productive - but mainly because micromanagement of teenagers is a bad idea.
Well, those are the four that I found disconcerting. The original post has six more issues the Corkums ran into. Next, I'll look at a post that shows how teachers can say things that are heard very differently by the parents of a student who is having behavior issues at home.
Completely OT - but hey, that's the benefit of blogging - while this is being posted, I'll be at the doctor's office with a screaming 13.5 month old baby who needs 5 injections (two for RSV, one HepB, one MMRV and one polio) for the second month in a row. Last month was two for RSV, one for HiB, one for HepA, and one for PCV-13. I'd rather he have the transient pain of a shot than any of these diseases - but damn, I'll be glad when April rolls around and he's back to one or no shots at the doctor's office.
Despite researching home schooling issues for several years, I'm still surprised at the number of home schooling parents who branch out into questionable choices in international adoption.
The Corkum family has six kids. They had two biological children, then adopted "Tee" when he was about 2 years old in 2009. (Her blog uses names for the kids which I assume are pseudonyms - but since I am unsure - I'm just going to use initials.) Tee's adoption is a good example of how international adoption can be beneficial. Melissa was adopted as an infant from Korea - which is where Tee is adopted from - so she has experience of being Asian-American in the USA as well as being adopted. Tee was the youngest child when adopted in. It took Tee several years to fully feel comfortable in his new home and he eventually received an additional diagnosis of Fetal Alcohol Syndrome Disorders (FASD). Tee seems to have academic struggles - but Melissa is actively involved in creating a classical curriculum that combines weekly planned co-op lessons with reinforcement at home. IOW, Tee's adoption seems to have worked out well.
By 2011, the family was in a good groove. At that point, the Corkums decided to adopt again but from Ethiopia instead. They were open to matching up to three adoptees with no restrictions on gender, relation, or age of the kids. They were matched with two unrelated kids: a 14-year old boy named "Jay" and a 13-year old girl named "Kay". On top of being unrelated to each other, Jay and Kay are substantially older than the Corkum's biological children and Tee. While finalizing Jay's adoption in Ethiopia, the Corkums find out that Jay was being raised with another orphan: 11-year old "Gee". The Corkums decide to adopt Gee to keep Jay and Gee together. In a post, Melissa mentions obliquely that at that point the adoption agency informed Melissa and her husband that adopting three unrelated teenagers is not recommended - but the adoption of Gee proceeds.
Long story short: Jay and Kay have troubles settling into a home-schooling family that doesn't speak the same language in a foreign country. Gee struggles even more and eventually needs in-patient treatment. By 2016, the kids are 18, 17, and 15 and none of them are living with the Corkums.
In 2014, Melissa wrote a post titled "What Not To Do In Older Child Adoption" that lists four mistakes the Corkums made that I feel safe broadening to "Don't Do For ANY Children" based on my years of teaching scads of unaccompanied minors, teenage refugees and kids in foster care kids as well as garden-variety teenagers.
Do not dis your child’s country of origin…ever. Or at least not until they develop a sense of humor. We adore Ethiopia but the truth is that it’s polluted and smoggy with an unmistakable diesel-mixed-with-raw-sewage smell, and they teach weird, backward things in health class. It will not build trust in your child to look incredulously at them when they tell you their health teacher taught them eating ice will give you tonsillitis or that Michael Jackson turned white because he had his skin turned inside out.
Perhaps the parents could focus more on the positives about Ethiopia (and there are a lot) and leave the attitude of American superiority behind.
I live in a rural area that smells like diesel mixed with either cow manure, pig manure or turkey manure depending on which way the wind blows. The area I grew up in smelled like gasoline fumes mixed with stale fast-food or industrial machinery depending on which way the wind blew. The places I like to vacation smell mostly like rotting fresh water plants, dead leaves, and the occasional whiff of animal urine. It's all about perspective - and what you are used to.
Is it so crazy that eating ice in Ethiopia might cause tonsillitis - or at least one hell of a sore throat? Let's say the health teacher was completely wrong. We have people in the US who believe that homeopathy works, taking colloidal silver during pregnancy reduces morning sickness, and that psychological struggles by adopted children can be cured by forced hugging. Go to a public place in the US and ask 30 people why Michael Jackson's skin turned from brown to white. How many different answers do you'll think I'd get and what percentage would be correct? Plus, these kids spent most of their lives speaking a different language and have only been immersed in English for 20 months at this point. I can only imagine what kind of a mess I would make if I had to explain how a vaccine works in Amheric or Oromo - even with 20 months immersion.
This next one freaks me out in terms of inappropriate bashing of a teenager:
Do not minimize felt discomfort. We respected their boundaries pretty well for the first 3 months. Then the honeymoon ended and so did my patience. Instead of honoring the fact that eye contact felt weird or that hearing the words “I love you” (even between two other people) were like nails on a chalk board, we verbalized how ridiculous they were acting. We probably should have tried “I wonder why ‘I love you’ makes you so uncomfortable?” (and been okay with a non-answer) when we really said, “That’s unhealthy. What are you going to do when you get married?…Nope, you won’t find a husband that’s okay with never saying those words. No really. Not going to happen. Ever. And that’s why you’re still in therapy, since you asked yesterday.”
First, thirty seconds of imagination should cure people of struggling to understand why it takes a long time for people to change their patterns of eye contact and expressing affection.- Imagine being transported to a culture where people always look over the left shoulder of the person they are talking to as a sign of respect and looking someone in the eye is a sign of rebellion or disinterest. I'd be insulting people left and right - and 20 months would barely make a dent in the habit.
- Now, imagine a culture where the accepted affectionate greeting between romantic partners is a deep tongue kiss. Saliva should be exchanged. People do this at the store, in church, at home and in front of elderly relatives. I'm an adult and it would take me at least a year to not have a shocked / vaguely repulsed expression on my face when people played tonsil hockey in front of me. Teenage me would have been even worse.
Melissa's response to her daughter's repulsion at hearing adults say "I love you" was brutal and callous. She essentially tells her daughter that she's not marriageable because verbal affection in public bothers her. Guess what? There are plenty of cultures where married adults do not exchange romantic or affectionate gestures in public or around other people. Better that her daughter find someone who can respect her personal boundaries than force herself to be uncomfortable all of her married life.
Her flippant and cruel taunt about therapy was childishly hurtful. Therapy has saved my life and greatly enriched the lives of many people I know. I'm sure her daughter is in therapy to deal with issues surrounding the loss of her biological family, the loss of her culture, the trauma of an international adoption, and the stress of living with a family of complete strangers. That's plenty of issues to work on that are far more serious than not liking public displays of affection. Melissa needs to get some individual and group therapy herself to learn better skills to control her anger rather than vent on a hurt teenager.
Her flippant and cruel taunt about therapy was childishly hurtful. Therapy has saved my life and greatly enriched the lives of many people I know. I'm sure her daughter is in therapy to deal with issues surrounding the loss of her biological family, the loss of her culture, the trauma of an international adoption, and the stress of living with a family of complete strangers. That's plenty of issues to work on that are far more serious than not liking public displays of affection. Melissa needs to get some individual and group therapy herself to learn better skills to control her anger rather than vent on a hurt teenager.
This next one boggles my mind coming from an experienced, successful home schooling parent:
Do not build expectations based around age. I wish we had established early on that we would make decisions and create expectations around currently exhibited skills. I love the way my friend, Alex, uses language such as, “Your behavior is communicating to me that you don’t feel safe enough or able to (insert something like "make your own food decisions" here). Let me help you this time and we’ll try again another time.” My tendency has been to frustratingly point out that kids their age should be able to follow a 2 step direction or copy a paragraph with minimal mistakes. We’ve also used words like “catch up” and “act like a big girl/boy” and “you SHOULD know that.” Bad ideas…even when your teenager showers with the shower curtain all.the.way open with no rug on the floor because the rug was hanging on the rod which, of course, made the curtain impossible to close.
A real benefit to home schooling that I believe in is that parent-teachers can meet their kids where they are functioning and help them move forward to the next level. Nearly every home schooling parent blog has at least post about how public schools are failing to meet their child exactly where they are at. (Ironically - so does Melissa. It's in reference to one of the adopted kids no less - but that's another blog post.) When confronted with having to practice that level of adaption her home school, she decides to tell her teens how badly are doing compared to other teens their age to shame them into working harder. That's unacceptable behavior for a teacher in a public school - and so much more hurtful when the teacher is also your adopted mother.
This last one made me laugh. Melissa has spent a lot of time around home schooled teens - but maybe not so much the average teenager at home before adopting her teens.
Do not assume anything. The attitude-y body language drives me nuts just like the next mom, but when they totally deny it…ERRRG. I’ve actually come to the conclusion that they are usually completely clueless to how they come across. So all those redos and lectures about such behavior…totally lost and probably caused loads of relational damage since the accused parties honest-to-goodness think they are innocent.
I need to thank my parents again for ignoring and overlooking "attitude" body language. Teenagers need some way to blow off the emotional energy created by every teen's beliefs that 1) their parents are overbearing and obnoxious, 2) no one understand them, and 3) life will be so much better once they are out of the house. I'm willing to bet the teens knew that their body language was angry, grumpy, bored or checked-out; those types of body language are pretty universal. What is equally important is that the parents -and teachers - pick their battles wisely. I could care less if a student was slouched in their desk or spent the whole hour glaring at me - that's their choice and it's not hurting me or anyone else.
I agree battling over body language was pointless and counter-productive - but mainly because micromanagement of teenagers is a bad idea.
Well, those are the four that I found disconcerting. The original post has six more issues the Corkums ran into. Next, I'll look at a post that shows how teachers can say things that are heard very differently by the parents of a student who is having behavior issues at home.
Completely OT - but hey, that's the benefit of blogging - while this is being posted, I'll be at the doctor's office with a screaming 13.5 month old baby who needs 5 injections (two for RSV, one HepB, one MMRV and one polio) for the second month in a row. Last month was two for RSV, one for HiB, one for HepA, and one for PCV-13. I'd rather he have the transient pain of a shot than any of these diseases - but damn, I'll be glad when April rolls around and he's back to one or no shots at the doctor's office.
Friday, December 22, 2017
Life with One (1) Medically Complicated Infant: The Tricky Bits
In my last post on this subject., I gave a rundown of what an easy day with my son was like when he first came home from the NICU. Those days were pretty straightforward if exhausting - but I managed to get between 8-10 hours of sleep a day (although none of it was in chunks longer than 4-5 hours), eat three meals, and generally get a chore or two done around the house.
If it was a tricky day, I got 8 hours of sleep, a meal eaten while doing something else, and prayed that my back wouldn't be permanently damaged from any of the gymnastics. These days also meant that I generally had no downtime between two feeds or I did a tube-feed with Jack in the backseat of the car while one of my parents were driving us to or from the doctor's office.
Here's what I remember from three tricky items: bathing Jack, medical appointments, and in-home therapy visits.
Bathing the Baby:
We bathed Jack about once every 7-10 days. I'd wipe him down with wet-wipes every two-three days, but eventually he'd get grungy enough that he needed immersion in water. The tricky bit was that Jack had a feeding tube and nasal cannula taped to his face - well, actually there was a base layer between his face and the tape, but you get the idea. Removing the wires, feeding tube and nasal cannula was simple especially since we only removed it when the base layer was coming loose on its own. The exhausting bit was replacing everything after the bath.
Post-bath work:
Therapist Visits:
Ok - truth in blogging time. I like home-visits by therapists. I get time to talk with an adult besides my parents or spouse plus the therapist is someone who was totally used to babies attached to medical equipment so I didn't have to explain anything to them. Since I did home-bound tutoring when I taught, I know that therapists aren't mentally judging my housekeeping or organizational standards; it's not part of their job description.
The down-side: Babies can smell a therapist coming from a mile away and work at thwarting their evil aims.
Plus, no matter when we scheduled an appointment, Jack would be hungry and cranky by the end and I'd have no downtime between two feed cycles.
For the first two months after he was discharged from the NICU, Jack averaged 0.5 doctor's appointments between his "normal" well-baby visits and specialists visits to the pulmonologist, cardiologist, neuro-developmental pediatrician, and optometrist plus two therapy visits per week.
We were lucky. Jack "graduated" from weekly PT at the end of the first two months and out of SLP at the end of four month into a single monthly appointment with a PT/OT early childhood specialist through Early On. Our SLP acted as a medical liasion guru who got Jack into specialists earlier so that his care would be transitioned faster. The optometrist found no signs of damage to his eyes so we just need a single yearly appointment until he's verbal enough to be checked at school. His lung issues and persistent PDA didn't lead to pulmonary hypertension so his next cardiology appointment is when he's three. We see the pulmonologist twice a year.
For kids with more substantial delays like Verity and Katie Musser or Lina, Olyvia, Rachele and Avi Carpenter, they could be entitled to three therapy visits a week each until they were enrolled in school (Speech, occupational therapy, and physical therapy) on top of well-child checks, any visits to the doctor for illnesses and quarterly/yearly appointments with medical specialists. Additionally, if the kids are eligible for Medicare and receive specialist visits, the kids are often eligible for home care aides to help with daily hygiene function which adds an entire different layer of scheduling to the calendar.
Just writing this out is exhausting - so that's why I am extremely skeptical that families with multiple children with complicated disabilities are able to cope with a single stay-at-home mom and whatever resources they can cobble together - especially if they refuse governmental services as many CP/QF families do.....
If it was a tricky day, I got 8 hours of sleep, a meal eaten while doing something else, and prayed that my back wouldn't be permanently damaged from any of the gymnastics. These days also meant that I generally had no downtime between two feeds or I did a tube-feed with Jack in the backseat of the car while one of my parents were driving us to or from the doctor's office.
Here's what I remember from three tricky items: bathing Jack, medical appointments, and in-home therapy visits.
Bathing the Baby:
We bathed Jack about once every 7-10 days. I'd wipe him down with wet-wipes every two-three days, but eventually he'd get grungy enough that he needed immersion in water. The tricky bit was that Jack had a feeding tube and nasal cannula taped to his face - well, actually there was a base layer between his face and the tape, but you get the idea. Removing the wires, feeding tube and nasal cannula was simple especially since we only removed it when the base layer was coming loose on its own. The exhausting bit was replacing everything after the bath.
Here's how I'd bathe Jack:
Pre-bath prep:
- Turn off monitor.
- Remove taped layers from Jack's face.
- Cut the feeding tube and nasal cannula free of the layers of adhesive.
- When Jack was on 24 hours a day of oxygen, replace the cannula using the slider on the tube to hold it in place. If he was being bathed during a oxygen wean, hang the nasal cannula on the flow meter or throw out if it needed to be replaced.
- If the NG tube was >14 days old, throw it out. If under 14 days, take the NG tube over to the kitchen sink. Use 10mL syringe to force 5-10mL of whatever pop we had on the counter through the feeding tube to dissolve any proteins that had coagulated in the tube. Drop the tube into about 1/4 of a cup of pop to clean the outside.
- Take off Jack's clothing. Remove the chest leads and stick them to the diaper wipes container. Remove the toe lead and lay it in the box of assorted medical items.
- Swaddle the baby in a bath towel and lay him in his bassinet.
- Put the baby bath on the sink and fill it. Get soap and washcloths ready.
- Remove Jack's diaper. Put Jack in bath.
Post-bath work:
1) Fish the feeding tube out of the pop and rinse it in water. Carry it back to the baby.
2) Cut a length of surgical tape about 4 inches long. Rip in half. Attach the pieces to the flow meter so I won't lose them. Tear 3 one inch pieces and attach to the flow meter.
3)Use the towel or receiving blanket to straight-jacket Jack's arms.
4) Measure the depth that the feeding tube needs to be inserted by placing the tip at the nostril that it will be inserted in, run the tube to the earlobe on that side of the head, then to a point halfway between the xiphoid process (bottom of the sternum) and his belly button. (Jack traditionally thrashed his head around during this part which made it insanely complicated.) Twist one of the pieces of surgical tape all the way around the NG tube leaving two sticky ends free. Lay the NG tube out of the way where neither the baby nor I will get the tape stuck on us.
4) Take out a sheet of duoderm, a roll of tegaderm, and scissors. Cut the duoderm into a barbell-shape where the thin bit fits on the skin between Jack's upper lip and nose without touching his upper lip. Remove the backing. Pin Jack's head in place while placing the duoderm on his face without stretching it. (Angry growls from the baby should be ignored.)
5) Lubricate the tip of the NG tube with saliva. Insert the NG tube by pointing Jack's chin upward and aiming the tube for the dark space in his nostril. Quickly and smoothly push the tube inward until the tape is reached. Attach the tape to the duoderm under his nose. (Counter-intuitively, Jack never put up much of a fuss during the actual insertion - probably because from his point of view I wasn't messing around with his face.)
6) Check the tube for placement in the stomach by attaching a 10mL syringe and suctioning. When it is in place, stomach fluid or formula will appear in the tube. (Honestly, you'll know if it goes in the trachea LONG before this point. It happened once. Jack's face turned bright red, he started frantically waving his arms and thrashing his head. We pulled the tube out in less than a second and he was fine.)
7) Lay the NG tube along the tegaderm on his cheek. Use the 1 inch pieces diagonally across the tube to secure in place.
8) Lasso the nasal cannula around his head. Tighten the slider in the back.
9) Cut a length of tegaderm. Remove backing and place over the NG tube and nasal cannula on one cheek. Cut another length. Use to secure the nasal cannula on the far cheek.
10) Replace the toe electrode.
11) Replace the chest electrodes. Cut two short lengths of tegaderm and place over chest leads to secure.
12) Turn on monitor. Redo toe electrode as needed.
13) Dress baby. Look at clock. Start feeding routine.
Medical appointments:
7-10 days before:
- Get one of my parents to come to help wrangle Jack's equipment.
Night before:
- Check his medical go-bag to see that it contains an entire NG replacement set (NG tube, duoderm, surgical tape, tegaderm, scissors, 10mL syringe), a replacement nasal cannula, a 2oz syringe for feeds and an unopened bottle water.
- Make sure the diaper bag has diapers, wipes, Vaseline, a spare outfit, a burp cloth, a pacifier and toys (once he got old enough to be interested in toys.)
- Check that the travel tank in the shoulder bag has enough oxygen for the trip. Replace if needed.
After the last feed before the appointment:
- Put car keys and wallet in pockets.
- Mark bottles with feed times that will occur during the appointment plus one extra. Place medications in the correct bottle. Place bottles into diaper bag (which is an insulated lunch bag.)
- Place diaper bag into the giant bag. Bring giant bag into dinning room.
- Put baby on changing table.
- Detach monitor from electrical outlet. Verify that the battery is working. Put monitor in giant bag.
- Use regulator on the travel tank to set the oxygen flow to 0.5L. Detach nasal cannula from oxygen concetrator. Attach to travel tank. Place travel tank in giant bag.
- One adult picks up baby. Second adult secures cords onto the first adult (so that the first adult doesn't trip on them) and picks up giant bag. Walk out of the house, down the steps and to the car.
- Put the giant bag on the floor behind the car seat. Secure Jack. One adult drives; other adult sits in back with Jack and is in charge with dealing with the monitor if it goes off during the trip.
Upon arrival at the doctor's office:
- Adult who is not driving removes stroller from the trunk, arranges the oxygen tank, monitor and diaper bag into storage under the stroller, removes Jack from the car seat, and secures him in the stroller. Driver watches for anyone who might not see the adult running around the outside of the car and parks the car after Jack's brought inside.
The actual appointments are pretty standard.
After the appointment, all of the previous steps are reversed. Tube-feeding in the car was the same as tube-feeding at home except that the adult had to hold the 2oz syringe over Jack's head to allow gravity to feed him so you have really tired arms at the end.
After the appointment, all of the previous steps are reversed. Tube-feeding in the car was the same as tube-feeding at home except that the adult had to hold the 2oz syringe over Jack's head to allow gravity to feed him so you have really tired arms at the end.
Therapist Visits:
Ok - truth in blogging time. I like home-visits by therapists. I get time to talk with an adult besides my parents or spouse plus the therapist is someone who was totally used to babies attached to medical equipment so I didn't have to explain anything to them. Since I did home-bound tutoring when I taught, I know that therapists aren't mentally judging my housekeeping or organizational standards; it's not part of their job description.
The down-side: Babies can smell a therapist coming from a mile away and work at thwarting their evil aims.
- Jack behaved like his physical therapist was trying to kill him when she placed him on an exercise ball or laid him on the floor on a heap of mats and blankets.
- He'd go completely limp and pretend that he didn't know how to support his head.
- Jack had an entire act where he'd slump over while being held in a sitting position and cough dramatically 3-4 times. Using his last bit of strength, he'd slowly raise his head up and bravely make eye-contact with the PT or OT before giving a weak, deathly ill baby cough. I would burst out laughing and "verbalize" Jack's performance as "Lisa, I really want to work with you today - I really do. But PT is making my multy-dwug wesistant tuburkuosis (multi-drug resistant tuberculosis) worse...so I just....can't. I'm so weak...." That would make Jack swivel his head towards me and glare at me because for siding with the PT.
Plus, no matter when we scheduled an appointment, Jack would be hungry and cranky by the end and I'd have no downtime between two feed cycles.
For the first two months after he was discharged from the NICU, Jack averaged 0.5 doctor's appointments between his "normal" well-baby visits and specialists visits to the pulmonologist, cardiologist, neuro-developmental pediatrician, and optometrist plus two therapy visits per week.
We were lucky. Jack "graduated" from weekly PT at the end of the first two months and out of SLP at the end of four month into a single monthly appointment with a PT/OT early childhood specialist through Early On. Our SLP acted as a medical liasion guru who got Jack into specialists earlier so that his care would be transitioned faster. The optometrist found no signs of damage to his eyes so we just need a single yearly appointment until he's verbal enough to be checked at school. His lung issues and persistent PDA didn't lead to pulmonary hypertension so his next cardiology appointment is when he's three. We see the pulmonologist twice a year.
For kids with more substantial delays like Verity and Katie Musser or Lina, Olyvia, Rachele and Avi Carpenter, they could be entitled to three therapy visits a week each until they were enrolled in school (Speech, occupational therapy, and physical therapy) on top of well-child checks, any visits to the doctor for illnesses and quarterly/yearly appointments with medical specialists. Additionally, if the kids are eligible for Medicare and receive specialist visits, the kids are often eligible for home care aides to help with daily hygiene function which adds an entire different layer of scheduling to the calendar.
Just writing this out is exhausting - so that's why I am extremely skeptical that families with multiple children with complicated disabilities are able to cope with a single stay-at-home mom and whatever resources they can cobble together - especially if they refuse governmental services as many CP/QF families do.....
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.
3) Ellianna - around 13 years old
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.
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.
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