Monday, March 20, 2017

When Love Isn't Enough: DYI RAD treatment - Part One

My little guy had his first at-home physical therapy (PT) appointment last Monday.  Lisa, his PT, examined his muscle tone and strength.  At the end of the exam, she gently wrapped Jack up in a swaddle blanket and cuddled with him so that he'd have a positive ending to exam.

My eyes filled with tears as I saw my little boy cuddle into the arms of his PT.  But my tears were not for me or for him.

I was crying because I realized how much the rogue, DIY RAD treatments that the Musser Family used for Katie took away from her.

For readers who are not familiar with Katie's story, Katie was adopted from Bulgaria at 9.5 years of age after experiencing extreme neglect.  She weighed 10 pounds 9oz and was 29 inches long at 9.5 years of age.  By comparison, my nearly 3-week old son weighs 9 pounds 2 oz and is 20 inches long.  Katie was born with Down Syndrome and extreme sensory deprivation coupled with barely enough food to sustain life have created permanent brain damage.

At some point during the adoption process, the Mussers decided that Katie has RAD - or reactive attachment disorder.  This is a real psychological disorder where infants who been had limited emotional support during infancy fail to show normal responses to stable caregivers.  This disorder is more common among infants who have received poor institutional care - but it is not a given that all children who come from even the worst situations will develop this disorder.

RAD shares symptoms with many more common disorders like childhood depression or autism.  A trained psychologist will be certain to exclude those disorders before diagnosing RAD.  The DSM-V specifically notes that a diagnosis of autism precludes a diagnosis of RAD - in other words, if a kid has autism, they can show symptoms that look like RAD - but the underlying problem is autism, not RAD.

Katie shows symptoms of autism that are consistent over time.  If her autism was solely based on lack of stimulation and interaction in her orphanage, her problematic self-stimulation and self-soothing behaviors should have diminished noticeably within months at most while with the Mussers since the Mussers clearly provided her with a stimulating and supportive home environment where she and Verity were the youngest kids.  This is part of the problem of diagnosing RAD without follow-up from a psychologist or psychiatrist - even a tentative diagnosis of institutional autism would need future checks to see if Katie's symptoms followed the normal, expected course.  If they did not, either a more aggressive treatment like targeted counseling for Susanna, Joe and Katie would be needed or a new diagnosis would be sought.

I remembered a post I read a few years ago when looking into Tommy Musser's accidental drowning. This was a long Q &A that Susanna posted after Katie was at home for a full year.  The post had some sections about controlling the amount of "physical affection" that any therapists that worked with her that struck me as counter-productive.  I'm looking at this idea in two separate blog posts following the original post sequentially and providing commentary in a linear style.  (I'm a tad tired with my little guy at home.)

Katie is enrolled in our local IU-13 program. She was first assessed in our home by a speech-language pathologist, a physical therapist, a psychologist, a vision specialist, and an occupational therapist over several visits last winter. When Joe and I met with the school district in the spring, we explained to them what our educational plan was for Katie and waited to see whether they would be willing to help us carry that out or not.

With Katie’s unique set of circumstances–her extended history of profound neglect, her subsequent attachment and bonding difficulties, her severe delays that were caused by neglect and not by her Down syndrome–because of all this, and simply because we know Katie, we know that what she most needs for formal education for the foreseeable future is someone to teach me how to do physical therapy, occupational therapy, and speech therapy with her, just as the Early Intervention program does for Verity.
  • I'd like to note that the psychologist was present for the purpose of testing Katie's IQ.   I think that's an important piece of information to know because otherwise people who are not familiar with the Special Education system might assume that this was when the RAD diagnosis was given. I don't think Mrs. Musser included the visit by the psychologist to be misleading, either - it's just confusing if you are on the outside looking in without previous experience.
  • Most parents have educational goals for their kids.  Susanna may not realize, however, that the school district is required to provide services to Katie regardless of the professionals' feelings about her parent's goals of education. 
  • Having a physical therapist (PT), occupational therapist (OT) and a speech and language pathologist (SLP) show Susanna and/or Joe how to do interventions at home with Katie is a very reasonable request.  That is a standard expectation for all therapeutic interventions before the child is able to do those interventions unsupervised.
We were adamant on several counts.

1. Because of her history and subsequent attachment issues, all of Katie’s instruction would take place in our home. I made this as clear as clear could be. “I would die before leaving Katie all day with someone outside the family.” Yes, I said that, and yes, I meant it. Katie needs physical affection, and lots of it, but not from anyone outside our family. We could not put her into a position where we were unable to give her the physical affection she needs, and where the people surrounding her were not allowed to give her that affection, either.
  • PT, OT, and SLP can be provided in the home if there is a compelling reason that travel would create a problem for the child.  My son's PT and SPL occurs from professionals who visit our home because his lungs have temporary damage from his extreme prematurity so keeping him at home to avoid viruses is medically necessary.  Katie does receive treatment in the home at first- but I'm guessing that her IEP didn't mention the Musser's ideas on why.  At this point, Katie had severe osteoporosis that made her bones unbelievably fragile.  I'm sure the district could make an excellent case that reducing the amount of travel and transfers was medically necessary for Katie's safety.
  • My assumption that the home-bound services were based on her bone density is supported by future events.  At some point before or during the 2012-2013 school year, Katie was enrolled in school.  There are a myriad of reasons that this could have happened - but Katie does receive PT, OT and SLP at school from that point on.  My guess is that at some point the Mussers were informed that home-based services were no longer an option (and that Tommy had no reason for home-based services).  This did not require them to enroll either Tommy or Katie in school, but it would require them to drive the kids to multiple appointments per week which would be hard if Tommy and Katie were their only children instead of two of four kids with special needs due to youth and disabilities.
  • I would have loved to be a fly on the wall after that IEP meeting when Susanna declared that her death was preferable to having Katie supervised by another adult all day.  There's not much a teacher or therapist can do in that with that statement besides document it.
  • Note the emphasis on no physical affection.  It comes up in the next post.
2. There would be no physical affection or even physical contact with the therapists other than what was actually necessary to accomplish the therapy. I hope at some point to address attachment and bonding issues as they relate to physical affection. In this area, as in so many others, we have been the beneficiaries of the wisdom and experience of countless adoptive families and adoption professionals.
  • I can't imagine that Mrs. Musser discussed her belief on no physical contact with the PT, OT and SPL providers prior to the IEP meeting.  While it is possible that all three of those providers were present at the meeting, that would be very unusual due to the time and budget constraints in educational services.  The following people need to be on the team:
    • The parents
    • One regular education teacher if the child is being serviced in regular education system (this is where I participated when I was a teacher)
    • One special education teacher if the child is being serviced through the special education system
    • A district or service area representative
    • One or more person who can interpret the results of the educational placement testing
    • Other persons who the parents or district want included because of knowledge of the child.
    • The child - if appropriate.
  • A single person can fill multiple "positions" so a special education teacher may also be designated to represent the district.  Likewise, a coordinator may represent the district and be able to interpret the reports of the psychologist, PT, OT, and SLP.
  • For an actual meeting, any member of the team can be excused as long as the parents and district don't object.
    • My entirely subjective guess is that there were about 5 people in the room - Susanna, Joe, a coordinator of services, a special education teacher and a district representative.
  • Notice that Susanna has consulted adoptive families and "adoption professionals", but has not consulted any licensed mental health professionals or child-development experts before determining that physical contact between therapists and Katie should be avoided.
3. I am a motivated and educated mom with experience in teaching another child with special needs, would be working with Katie myself on a daily basis, and was looking for someone to give me suggestions for how to help her progress, not for someone to directly interact with her.
  • This is an excellent example of hubris.  
    • Susanna has taught Verity, her daughter with Down Syndrome, for the two years since Verity was born.  She's never described having previous educational or career experience in education of young children with disabilities so Verity's education is her sole experience her blog readers know of.
    • By assuming that the therapists can teach Susanna to do all of the therapy that Katie needs, Susanna is declaring that two years of teaching Verity at home is equivalent to admission to and completion of a PT, OT, or SPL Master's degree.  All three of these program types are very competitive; the incoming PT and OT classes at the university I am studying at have undergraduate GPAs of over 3.8 on a 4.0 system!
    • All three of these disciplines are highly dependent on physical touch to evaluate non-verbal clients skills and weaknesses.  PT, in particular, relies on feeling muscles and joints to determine the tone of muscles as well as the mobility and stability of joints.  There is no substitute  for all of these therapists using their hands to determine the best course of treatment.  
4. Everyone on her team needed to be aware of her extremely fragile bones, and familiar with the protocol for proper handling of a child with fragile bones if necessary.

We explained the reasons for these stipulations. The team bent over backward to agree to them.
  • Understanding the dangers of Katie's severe osteoporosis cannot be understated.  Her bones are so weak that lifting her incorrectly can cause fractures at this point.  Reminding the team of this issue was critically important for Katie's safety.
  • Assuming that the description of the team's eagerness is real, I can't imagine that Susanna told the team that the therapists couldn't have physical contact with Katie.  I can see why the team would be more than willing to stipulate "no physical affection" with a kid who has dangerously fragile bones - a badly timed hug could be tragic.  I am simply skeptical, though, that the team was excited about sending therapists to teach Susanna to do their jobs while failing to actually interact with Katie at all.
So Katie’s therapy schedule looks a lot like Verity’s did back when her three therapists came twice a month. Katie has an occupational, a speech, and a physical therapist who each come to our home twice a month for about an hour each time.

During the summer months, we prefer therapy sessions to take place in the morning so we have the rest of the day for other plans. During the school year, therapy sessions take place in the afternoon to minimize the disruption to the rest of the household.

During each session, the therapist and I discuss the progress that Katie has made, and talk about new ideas to help her in her weak areas. Then I try out the new ideas with input from the therapist. We write all ideas on index cards.
  • Yikes. I see why the team was so quick to agree and sign off on the IEP - the Musser family is being massively short-changed in number of visits per months. 
    •  For infants with an active diagnosis like Verity , the standard number of visits is one per week - not one every two weeks.  Verity is getting about half the visits she needs.
    • For a kid with an active muscular problem like Katie, the frequency of visits is much higher.  
      • I needed help stretching my calf muscles enough that my heels would touch the ground during pre-school through second grade, I started with 4 sessions of PT per week as pull-outs during young fives and eventually reduced the number down to 1 per week in second grade. 
      • This means that Katie is getting 16% of the visits she needs from PT.
  • A depressing truth of special education is that states have under-funded special education for years.  This puts special education teachers and professionals in a bind; what is best for each kid has to be weighed against the available pot of money.
  • On the flip side, many parents are unaware of their power in writing an IEP.  If a parent doesn't feel that an IEP contains everything that their child needs, DO NOT SIGN IT.  The IEP is a legal contract of services provided by the district to the school - you cannot be forced to sign it.  Refusal to sign the contract can often cause the district to offer a better package.  If they don't, parents can force the IEP to go to mediate or arbitration.  That also often brings the district back to the table prior to those steps.
    • I know that I'm describing writing an IEP in the same terms as haggling for a used car.  That's what happens when state governments choose lower taxes over funding schools.  It's gross process for the parents and dispiriting for the staff who work with the student who are trapped between helping the kid and getting bitched out over budget shortfalls.  
      • The biggest difference - Parents have even more power in writing an IEP than buyers do in haggling for a used car.  Know your power; own your power; use your power.
      • The Mussers - well, they knew their power, kind of - but were focused on preventing physical affection that they missed negotiating the most visits for their kids as possible.  
      • Either that or they asked for fewer visits to disrupt their home life less.  Having therapists in and out of the house is time-consuming and disruptive for me - and I'm a SAHM with one infant.  Running a home school for nine kids, two of who have major disabilities makes the therapy visits much more problematic in terms of scheduling - but no less vital for Katie and Verity.
The rest of the information is pretty standard.  Home-based therapists will do their best to work with your schedule.  For any age client, a portion of each visit consists of discussing how things have gone since the last visit and another portion reviews how to do the exercises that are needed.

This post has laid out the ground work of how the Mussers expect their home therapists to act.  The next post runs through what happens when a PT rebels (according to Susanna)
*I did have some qualms about writing this post after Jack's PT appointment.  I wasn't sure if I felt ok about criticizing an inactive blog.  My qualms disappeared when I realized that "The Final Curtain" stayed down for three months.  Susanna's been schilling for one of her friends to get a larger house so that their adopted kids with disabilities can use walkers around the house - and, no, I am not making that up or exaggerating.

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