Friday, March 24, 2017

When Love Isn't Enough - DYI RAD Treatment - Part Two

I've been thinking about why I'm having a strong reaction to how the Musser family restricted Katie's therapists to no physical affection and only the minimal amount of physical contact.    I think there are two realities of my life that are at play now.

First, I really liked my physical therapists when I was a kid.  I had a male physical therapist when I was in pre-school named Larry.  In the last post, I told you that I saw him 4 times a week to work on loosening my calf muscles to allow my heels to touch the floor while walking.  He was amazing!  He made PT a lot of fun which is important.  Physical therapy requires keeping muscles at the point of tension for stretching and working muscles repeatedly to strengthen them which is tiring and tedious. As an adult, I could see the long-term benefits when I needed PT to recover from an injury; as a kid, I thought that adults' obsession over my heels touching the ground was stupid.  Left to my own devices, I would have done permanent damage to my legs because kids are not good at seeing the big picture.  Larry's skill at making PT fun - and being someone I enjoyed being around - was critical to my long-term health.

Second, I had to make some real choices about how my son would interact with people while he was in the NICU.  The nursing staff was amazing - but I'd be lying if I didn't feel jealous sometimes.  His primary nurse was spending 12 hours a day with him when I was still sick enough that seeing him one hour a day left me exhausted.  When choosing a primary nurse, I could have chosen someone who was less affectionate or demonstrative towards Jack so that I would never have to worry about feeling jealousy again, but I did not.  I picked nurses who were excellent technical nurses while Jack was on a ventilator who also clearly expressed happiness and affection towards him.  I wanted Jack to be surrounded by loving people who rejoiced in his feisty personality.  I wanted nurses to talk to him, sing to him, give him affectionate touches and enjoy him so that he would learn that interacting with people gives comfort.  Yes, I felt jealous sometimes - but that's MY problem to deal with as an adult does.  I would not make my son's life harder to make my life easier.

I feel angry when I read these posts.  The reason that RAD is problematic is that the child suffers.  The withdrawn form means that the infant has no easy way to receive comfort from adults; the overly-rapid attachment form - which is the type that Susanna self-diagnosed - isn't a true problem for infants and toddlers because parents act as gate-keepers to keep unsafe people away from the baby.  Treating the rapid attachment form is important so that when the child is a child, teen and adult they develop the skills to attach to safe people and avoid unsafe people.  For Katie, this is a non-issue; she has suffered such severe brain damage due to horrific malnutrition that she always need gate-keepers for her own safety.    This means that Susanna was actively depriving Katie of pleasant interactions with safe people so that Katie would show affection preferentially towards Susanna since Susanna is her Mama.  Even Susanna's definition of attachment annoys the hell out of me - a sign of bonding in toddlers is that they act horribly around their care-givers from time to time while being super-sweet to outsiders.  The reason is that kids only push boundaries with people they feel safe with.

Question: How do you feel her attachment to you and your family is going?

Answer: Up until it was given a hard test, we would have said Katie’s attachment to us was stronger than it is. She has obviously made enormous progress from where she was, but everyone has been keeping an understanding and appropriate distance.

The hard test was her physical therapist. I could tell right from the start just by the therapist’s body language that she thought we were overdoing this no-affection thing. She really pushed the envelope. I had thought Katie had made more progress with attachment, but it hadn’t been tested by someone being that physical with her, holding her upright face to face, singing to her, and being all playful and lovey, et cetera. Katie’s response immediately clued me in.
  • I am struck that Susanna's definition of Katie's attachment to her family is based primarily by how Katie reacts when presented with a friendly stranger.  The attachment that matters is how Katie acts with her family in their normal setting around the home - and that sounds like it was going well enough.
  • I'm impressed with the acting abilities of the other therapists Susanna met if the PT was the first person who showed that they thought she was over-doing the "no physical affection" rule.  
  • Notice that Susanna has changed her expectations of the therapists three times in this post.  First, the rule was "no physical affection" which was easy enough for the therapists to follow.  In the same section, she swapped "only absolutely needed physical contact to do the therapy" for "no physical affection."  Now, she's swapped "all playful interactions are forbidden" as the rule.  IMHO, this rule seems punitive towards the therapist and Katie regardless of her intent.  Imagine spending an hour with someone as a child who was not allowed to be playful or "lovey" with you who was making you do vaguely uncomfortable things.  
  • To get this out of my system, physical therapy requires "being physical"!  It's in the god-damned name for a reason!  Singing, being playful and showing affection verbally is NOT physical affection.  
  • Take a wild guess what Katie's response was.  If you guessed "Katie enjoyed interacting with the PT", you win.  Guess what Susanna's response was.  If you guessed raging jealousy disguised as concern for her daughter, you win.
When I said something about it to the therapist after just a few sessions, I was so nervous that my hands were shaking and my voice was shaking. I said straight out that correcting professionals is a very uncomfortable thing for me, but that for us to go any further together, that there were some things I needed to explain.

I told her that she wasn’t just dealing with a child with Down syndrome or autism, which she had doubtless encountered before, but with nearly ten years of profound neglect from Katie’s birth onward. I explained how that can affect a person’s emotional development and ability to form healthy bonds later in life.

I also explained that every individual we had met during all the months since we had brought Katie home had been respectful of our request for no contact except for this one exception.
  • "Just a few sessions" sounds like a short-time period but Katie was seeing the therapist once every two weeks.  This means that Susanna had been stewing about this for at least 6 weeks if not longer before she said something to the PT.  This is doubly strange since home-based therapists leave their number for parents to call for contact between sessions.  To me, this is worrisome because Susanna is clearly committed to her method of increasing attachment, but cannot work up the courage to discuss a problem with a therapist for at least 4-6 weeks. 
  • I'm willing to bet every penny I own that the PT was well-aware that Katie had suffered years of profound neglect before Susanna explained that tidbit to her.   That pertinent piece of information would have been prominently featured in her educational record that the PT looked at prior to treatment.  
  • I'm amazed at Susanna's naivete that Susanna believes that the PT has never seen a client who suffered from nutritional and relational neglect.  Katie suffered a particularly severe and extended version - but I've never met a PT who hadn't had clients who were removed from severely neglectful homes before.  
  • I'm insulted by Susanna's assumption that the PT is completely clueless on the emotional development of infants and children.  PTs and other pediatric therapists are wealthy storehouses of knowledge on pediatric development.  
    • My son's PT  was examining him for the first time.  After she had done a few exercises with him, she sat Jack upright on her lap.  Jack immediately looked away from her.  She laughed gently while saying, "Yup.  If you can't see me, I'm gone.  I can't make you do these exercises if you can't see me."(Jack is a newborn based on his corrected age; he doesn't have object permanence yet.) She waited patiently until Jack decided to look back in her direction before moving on; that meant that Jack had given some sort of permission for her to work with him.
  • It's somewhat easier for OTs and SLP to interact with a kid with minimal physical contact than a PT.  (I know I keep saying this, but Susanna's making the PT's job damn near impossible and that pisses me off.)  I know she's gotten under my skin because I really want the PT to respond, "If all the other therapists jumped off a bridge, would you expect me to do so too?".

The therapist explained that she had to demand a lot of a child, and had to have a rapport with them in order to do that. I said, “You already have that with Katie without trying; that’s the problem.”
  • Kudos to the PT.  A PT has to build a positive relationship with their client.  For non-verbal infants and children, that's done through playful interactions.  If the PT ever reads this, I want to give you a hug, an award, a public ovation - whatever type of praise makes you happy.  You rock in a shitty situation.
  • Susanna's description of this event with the PT disproves her statement about having a relationship with Katie without trying.  Susanna didn't start by saying that Katie initiated the interactions with the PT; the PT had to use some basic child-adult bonding tricks like singing, looking at her face and being playful.  (Seriously, this is the first damn time I've run into someone who is complaining that their therapist was too nice to their kid. ) 
  • Susanna's zero-sum view of child bonding is abnormal as well.  Katie bonding with the therapist will not interfere with Katie's bonding with Susanna.  Katie spent her first 10 years learning that adults didn't give a shit about her.  Now, with playful, caring medical staff and a supportive family, Katie should be learning that adults love her.  Adults care for her. Adults keep her clean, warm, fed, stimulated and comforted.  Instead, Susanna is insisting that Katie learn that Susanna is the only adult who will make her feel happy and safe while everyone else is emotionally distant - which is a terrifying state for infants and children.  It's too scary for Susanna to face the truth - Katie is not likely to be effusive in her affection towards Susanna - so Susanna instead labels any affection Katie shows towards other adults as pathological.  That's really disturbing.
We kept talking. I told her that if we had to choose between physical therapy goals and bonding/attachment goals, the physical therapy was going to take second place. After that, she could see that my foot was going to remain down.
  • It's always a bad sign when someone throws a false dichotomy and is completely unaware of it.
    • Katie's PT goals are not getting in the way of Katie's bonding/attachment goals; Katie is more than capable of reaching her own bonding and attachment goals.  
    •  Katie's PT goals may be getting in the way of Susanna's bonding and attachment goals for Katie - but I have already posited that Susanna's goals are unrealistic for a newly adopted child out of a horrific situation or for a child with autism.  Truly, I don't know that many healthy children would show a permanent demonstrative preference for her first and always regardless of who was present.
  • Susanna's threat is horrific when you parse it out.  Let me put in plain English and use a word I hate because I don't know how to make it clear: "PT, if you don't do what I want, I will cripple my child."  I've made a strongly worded claim so allow me to explain what the consequences of "putting PT second" or pulling out of PT all together would do to Katie.
    •  Katie's body has had normal movement denied her for her first decade of life.  That means her body has developed abnormal muscle tensions that can do permanent damage. One thing I noticed in her Bulgaria pictures is that she's used to laying flat-out in an extended position. (My son has the same issue from being born prematurely.)  This will cause the muscles in her hips and shoulders to become overly tight from lack of being in a more natural flexed position.  (The flexed position is the fetal position - all curled up into a nice ball - while the extended position looks like Superman - arms and legs straight out and the torso is straight, too.
    • The one "saving" grace - and this is totally counter-intuitive - is that Katie's level of starvation kept her from growing much during the first decade of her life.  Growth spurts put a huge amount of pressure on the muscles of the human body because bones grow faster than muscles. If Katie was deprived of PT during her first year as a Musser, the weaknesses and overly tight areas that existed from the orphanage would place abnormal pressures on her growing muscles, tendons and ligaments.  This would lead to a much longer course of PT later on that may include surgeries to fix the now abnormal muscles, tendons and ligaments.
      •  Katie grew 7 inches and more than doubled her body weight in her first year with Susanna and Joe - that's amazing and a real tribute to Susanna's willingness to find nutritious foods that Katie would eat.  It also made PT oversight critical.
    • Did Susanna know that she was making this horrific of a threat?  I don't think she did.  Most people don't have a detailed knowledge of pediatric structural growth; I do mainly because I had pediatric PT and learned more as an adult.  Realistically, Susanna - in as far as she had thought it out - probably thought that a lack of PT would push Katie's physical mobility milestones back a marginal amount of time.  Remember, Susanna already overestimates her skills based on having home-schooled Verity as an infant so she likely thinks she can just act as a PT herself if she refuses PT service.  That's the real danger of hubris.
  • So the PT just knew that Susanna's foot was going to stay down, huh?  I'm going to hazard a guess that the PT was more worried about navigating a mine field to get care for her client, Katie.  Here are some issues I can see right off the bat:
    • Susanna has a legal right to refuse PT for Katie regardless of the reason.
      • The PT is a mandated reporter if Katie is being medically neglected - but she'd have a hard time proving that.  Katie is well-fed, growing and picking up new motor skills already.  The issues with declining PT won't be evident for months to years - and in my teaching experience CPS has had a hard time enforcing medical needs that are much more urgent and obvious like "Your kid has type 1 diabetes, has had multiple hypoglycemic episodes that could have ended in a coma this month and you seem clueless on how to stop this from happening" so I don't know that a report on Katie would go beyond the "read by someone at CPS" stage.
    • The PT knows that Katie needs PT badly and that she's in a critical period of monitoring.
    • The PT knows that she can't do PT with Katie while withholding physical contact.
    • The PT knows that following Susanna's instructions on being emotionally absent from Katie while working with her are counter-productive to Katie's emotional health AND unethical.
    • The PT suspects that Susanna is serious about this insane idea - but, then, Susanna also took weeks - possibly months! - to bring up her complaints.    
  • I think - although I can hardly be certain - that the PT came up with a holding pattern solution to buy some more time to see if Susanna would become more comfortable with people interacting with Katie naturally - you know, loving and playfully - while still getting some PT for Katie.

Since then, she has demonstrated various moves on me to give me the idea of what she’s shooting for with Katie.

Katie needs to keep growing that bond with Mama.

  • Susanna manages to make herself the center of Katie's PT - and she seems blind to how dysfunctional the only solution that the PT has left is.   
    • The correct way to demonstrate what the PT wants to do with Katie is for the PT to demonstrate WITH Katie.  That's what my PT did for my parents when I was in PT and that's what Jack's PT did for me today.  
      • Reason one: Katie's body is not Susanna's body.  Jack's body is not my body.  Jack's PT told me that his hamstrings were a bit tight and my husband and I should start adding hamstring stretches to his daily PT time.  I ask her to demonstrate a good stretch on Jack for me.  She convinces Jack to let her work with one of his legs while he is laying on his back. and gets his knee facing straight up.  This looks like I expected - until she guides Jack's leg up until it almost touches his shoulder.  My jaw drops like a rock; I had no idea that was the normal range of motion on an infant. I would have stopped at about a 90 degree angle since that's what I've seen kids and adults do my whole life.
      • Reason two: Demonstrating on Susanna gives Susanna too many feedbacks from her own body that will be missing when she works with Katie.  Imagine the PT and Susanna are doing that hamstring stretch.  Susanna will know when to stop the stretch on herself primarily because she'll feel a mildly uncomfortable - but not painful - tension in her hamstring.  Susanna can't feel that sensation when working with Katie and Katie can't verbalize "That's a bit much" or "I'm not feeling it yet."  The PT spent three years of classroom and practical training learning how to feel when a stretch is deep enough based on physical touch - she can't magically pass that training on to Susanna in two hours a month.
    • Will Susanna allow the PT to examine Katie?  There are plenty of examination techniques that a trained PT can do safely that are not considered safe for lay people to do.  For example, Jack's PT checks his head lag - how far his head hangs back behind his torso as his torso straightens - by gently pulling on his hands to get him from laying on his back to seated.  Parents never do that exercise nowadays because it can lead to arm and neck problems if done incorrectly.   Is the PT simply supposed to guess?  Or is she supposed to teach each exam to Susanna, have Susanna do it once, and make her recommendations off of that? 
      •  If so, how the hell is that a good use of KATIE'S PT time?  You know, the person who needs the PT.
  • The most discouraging part?  Susanna reported in the last Q and A about Katie - four years after her adoption - that Katie is still suffering from RAD. 
Apparently, you can lead a horse to water, but you can't force it to drink - nor can you force an adult to learn about childhood bonding if the answer isn't what she wants.

No comments:

Post a Comment