This blog is my place to vent and share resources with other parents of children of trauma. I try to be open and honest about my feelings in order to help others know they are not alone. Therapeutic parenting of adopted teenagers with RAD and other severe mental illnesses and issues (plus "neurotypical" teens) , is not easy, and there are time when I say what I feel... at the moment. We're all human!

Wednesday, March 27, 2013

Document, Document, Document!


One thing I HIGHLY recommend to any parent dealing with children of trauma is to DOCUMENT, DOCUMENT, DOCUMENT!!

You've heard me say it before... I'll say it again, and again.  It has helped protect us (from false allegations among other things), get services for our children, and refresh my memories of past issues so I can see progress and make sure chronic issues get addressed correctly.


PUT IT IN WRITING 
When dealing with police, CPS, medical professionals, school...
getting your child services and treatment,
trying to get people to understand and believe what you're going through...
It's amazing what people will believe when it's in writing (versus hearing it from the parent - no matter how super calm and logical you are).

One of the main things to remember about documentation is to do it as SOON as possible after an incident.  Adrenaline and time really alter memories quickly.  

FALSE ALLEGATIONS
Our children are especially prone to false reporting for many reasons - one is an actual distortion of the events in their mind (they remember the feelings and often associate it with things that happen in the past) - we remind Kitty that her perception is off when she describes event that led up to a meltdown (she doesn't remember anything when she's in "fight/ flight/ freeze mode"). She'll say "Daddy was yelling at me," when all he said was, "Who left the butter out?" in a totally normal voice.

 "I was following the medical advice of .... " and  then present them with your documentation!

Incident Reports
To protect all involved, I recommend writing an "Incident Report" and keeping it in a log/ timeline, sending it in an e-mail to the child's therapist or whomever might keep track of the info, and/ or on the child's timeline:

You don't necessarily have to report an incident every time, but you really should document it every time, even if it's just in your own notes. If I have someone I can tell (therapist, case manager, school behavior staff...), then I tend to send an email to them and copy myself. That way I have the documentation time stamped.

  • Antecedent - what was going on before the behavior or possible/probable triggers.
  • De-escalation - what we said/ did to try to prevent the event (if we had time) - calming techniques
  • Behavior/ Event - with as much detail as possible
  • Intervention - what we we did during and immediately after the event - how we tried to calm the child, confrontation, redirection, distraction, sitting with them, time-ins, holding, rocking.., 
  • Follow-up - how you processed what happened with the child.  Injuries, damage, repairs needed/ made (emotionally and physically)... What consequences were given (if any). Agencies contacted. Reports filed. 
Contact Log:
Especially when dealing with bureaucracy (like insurance or school!), try to keep as much communication as possible in writing (e-mails, notes).  If the person insists on phone calls and face to face meetings, take detailed notes and IMMEDIATELY type up a transcript afterwards with as MUCH detail as possible.  Include names, titles, agencies and affiliations, DATES, and TIMES!  When you need documentation you can use these transcripts and they are MUCH more admissible then saying, "Well Ms. So and So said he was doing this a few weeks ago."  Once again, people believe what they see in writing.

Date and Time and Confirmation
I frequently send an email confirming what was discussed in a phone call or face to face, and include bullet points about what each of us agreed to (especially if the other person is supposed to be doing something). Often I will copy others on the email, to keep the person accountable.

Another thing I do is write e-mails to the kids' therapist, teacher, school administrator, caseworker... whoever needs to hear it,  about whatever the latest incident/ issue might be, and always copy myself and store these e-mails. (You can also email something to yourself only to get a time and dated documentation.).

Getting Services
Often our children need a lot of documentation to get services.

For example, to get insurance to pay for psychiatric residential treatment (RTC), you have to have several "boxes" checked.
I spoke to a customer representative for our insurance company, kind of off the record, and he mentioned that one thing my child needed for them to approve RTC was an SMI diagnosis (Serious Mental Illness). I went to Kitty's psychiatrist, because while she was taking medication for Bipolar Disorder, she wasn't actually diagnosed with BD or even a Mood Disorder NOS. I explained the need for the diagnosis to the psychiatrist, and he told me he hadn't put it in writing because, "it would make getting life insurance difficult as an adult"?!! Like I cared about that! Kitty needed RTC now! I calmly explained why we needed the diagnosis and he added it.

Getting Accurate Diagnoses
Part of the problem is that a psychologist can only diagnose what he/she sees at the time of the evaluation. For example, if the child is stable on Mood Stabilizers or ADHD meds or is under less stress because it is summer time, then the pdoc probably won't diagnose the child with Bipolar Disorder, ADHD, anxiety....

About a year and a half after Bear came to live with us, I took him in for a psychological evaluation, I brought a lot of additional documentation that I'd collected (past psych evals, BASCs we and his teachers had done in previous years, a short version of his timeline...). I'd copied pretty much every one of those complex forms they make you fill out when you see a new therapist or doctor or the school does an assessment...

Even though I said the exact same things that were on the documents when the psychologist interviewed me, I'm always amazed at how much more people pay attention to things in writing. Even if they know we wrote it! We finally got the RAD, PTSD type diagnoses that I'd known he'd had, but wasn't in previous psych evals (I know for a fact that some of those psych evals were removed/ altered/ ignored while he was in foster care).

Also, we "poked the bear." This means instead of helping him emotionally regulate like I usually do, I brought up some triggering stuff - not rage inducing, but enough to get him a little off balance and less likely to focus on charming the psychologist which he usually would (my kids can honeymoon for months with new people!) . I felt fairly confident that the psychologist correctly caught a lot of my son's diagnoses.

When we took Kitty to the same psychologist a few months later, I didn't bring in all the extra documentation. Looking back, I don't feel anywhere near as confident about the psychologist's diagnoses.

You know your child best. 

It was kind of scary, but I did my own research and guided (usually in written form) the psychologist/ psychiatrist to the diagnoses I felt fit my child best.

For example, I asked my daughter's psychiatrist if she thought my daughter might have BPD, and she confirmed that she thought my daughter had BPD traits. I bring a one page Current Meds and Diagnoses page to appointments with new doctors, therapists, and other professionals (and sometimes hand it to professionals my kids have been seeing for a while to "refresh" their memory). I agreed with the psychiatrist about the BPD traits, so I looked up the code for BPD and added BPD traits to her list of diagnoses.

Done. It showed up on everyone's diagnoses list from then on, because I handed them the page whenever we were working with someone new.


I have several different types of documents I use:
  • The 3" 3 ring binder - is the one I take everywhere - school IEP meetings, doctor/psychiatrist appointments, anytime I'm going to have to fill out a ton of paperwork requesting dates and dosages.  A lot of this info is duplicated in the first section of the timeline.  I usually try to keep a one page summary in my purse (current meds and dosages, and contact info and numbers for all current providers.
  • A one page current meds and diagnoses page that I keep in my purse as well as having it as the first page of the 3" 3 ring binder.  I think of this as a summary.  It's especially useful to have on hand when I need to fill out a health form for school, admittance forms for a psych hospital or residential treatment center, new therapist or medical practitioner forms, to give to police officers and to child protective service workers (when we're reported for child abuse by a child who makes false allegations).
  • I also have a one page letter that I send out every school year to teachers and people who will be working with my child.  This is a brief summary of my child, since most teachers don't have time to read a child's whole file.  It gives tips on what works and what doesn't with my child, diagnoses and what they mean, and contact information for me.


A good reminder on how to write letters to the school and others: Letter to a Stranger 

When writing letters, keep in mind some important points:
  1. What do I want this person to know and why do they care? Without exaggerating, use phrases that will get their attention and see why it's relevant to them. "The child's life is in imminent danger" "The school will be liable if my, or another child, is hurt or injured due to the school's neglect of this issue" 
  2.  KISS.  Just the facts.
    • The shorter the better.
    • Bullet points are helpful.
    • Don't give background information unless it is absolutely needed
  3. Leave out the kitchen sink. Only address one or two issues at a time. 
  4. Be professional. Imagine you're writing about someone else's child. 
  5. Avoid what could be seen as emotional or passionate. This is not the place to complain or vent - you will be dismissed as whiny or overemotional. Your valid points will be colored by this perception and probably the whole letter will be ignored. 
  6. If needed, include steps taken in the past that worked or didn't work. You don't want to have to go over these again, and you don't want them to think nothing has been tried, and you're expecting them to do everything.
  7. Include action points and deadlines. Make sure they know what needs to be done, who is expected to do it, and by when. 
  8. Know what you want. Don't use this as an open-ended plea for help. Know what you want to have happen and write as though you expect it to be done that way. If you don't know what you want, talk to other trauma mamas about your options or brainstorm with a trusted friend or professional.
  9. Have an end goal(s) and state it clearly.  Include it in your intro and in summary if this is a long letter.
  10. Get someone else to edit. Have a trusted friend or professional review it before you hit send. You need an extra pair of critical eyes. Plus, grammar and spelling really do matter.
  11. Do a last review. Make sure it says what you want it to say and meets these points.
  12. Copy EVERYBODY. Go at least 2 levels above the person you're directing it to. The Director of Special Education, your Ombudsman, your attorney (I have a friend that is an attorney - with her permission, I include her email in my cc list (her email addy is @soandsolawfirm.com so they know it's an attorney). She knows I don't expect her to do anything about it.)...
An example of how NOT to write a letter. I Finally Hit Send. Better, but still not effective. Revised Letter.


VIDEO CAMERAS and PHONE VIDEOS
I'd be super careful about cameras in bedrooms and bathrooms. You don't want to be accused of invading their privacy. If you do decide to use your phone or video camera a meltdown, don't post it on the internet, and don't show it to anyone that doesn't need to know. It's better if you retain control of the video (don't put it in an email that someone can forward).

Out of context, a video can actually be used as evidence that YOU are doing something inappropriate.



TIMELINE

The most important document I maintain is more of a "living document" that I call the kids' "Timeline." Which I keep on my computer as they are over 60+ pages each!   It's a historical record that I may share with the kids someday.  One suggestion I've heard is to put this document in a Google document, so you don't have to worry about your child getting access to it, and so you can access it no matter where you are or what device you're using.

When I review it, I'm always amazed at how many events I've forgotten/ repressed.  For the kids, it helps us determine what's a true memory, an episode that's been forgotten or distorted, a story that's been fabricated or just pieced together at some point in their history.

My kids moved a LOT as children and had a lot of people in and out of their lives, plus their memories are not the best.  Comparing stories from the two of them, documents from child protective services, talking to bio family... I think their history is as accurate as we can get it.

 Here's the basic timeline outline: 
I. Current Information 
a. Development 
b. Diagnoses
c. Current Meds
d. Current Emotional Issues
e. Current Physical issues
f. Discipline Program (FAIR Club, RRHAFTBALL)
II. Treatment History 
a. Medications
b. Assessments
c. Treatment Types
d. Treatment Providers
e. Treatment Facilities
III. Cast: 
a. Adoptive Family
b. BioFamily (including Biomom and Biobrother diagnoses)
c. Foster Care
d. Schools
e. Other
IV. Basic Timeline
V. Detailed Timeline

Ex.


Kitty (K.) Timeline


I.              Current Information - Name, birth date, age and grade in school, and ethnicity (my kids are Native American), and significant events (ex. date of adoptive placement and adoption) - {Just a one paragraph summary}
a. Development - {Obviously depends on what you know - for example, was it an unplanned pregnancy, teenage mother, born early/ late, mother have history of drug/alcohol abuse, child born addicted, born with umbilical cord around neck...?  Also Developmental Milestones - things like talked late, walked at 9 months, 
b. Diagnoses - {I include the results of the most recent evaluation - include the date}
Ex.  Neuropsych assessment (04/17/12)
Axis I:  309.81  Posttraumatic Stress Disorder, Chronic, by history
            296.80  Bipolar Disorder NOS, by history
            314.01  Attention-Deficit/Hyperactivity Disorder, Combined Type, by history
            294.9   Cognitive Disorder NOS (deficits in processing speed, working memory, executive functioning, and visual memory)
            995.54  Physical Abuse of Child, Victim, by history
            995.53  Sexual Abuse of Child, Victim, by history
            995.52  Neglect of Child, Victim, by history
            307.6   Enuresis, by history
Axis II:  799.99  Diagnosis Deferred (R/O Borderline Personality Disorder (Emerging)
Axis III:  Obesity
              Constipation
              Acne
              Deferred to primary care physician (Cerebral Dysrhythmia based on previous EEG)
Axis IV:            Problems with primary support group
                        Social Environment
                        Educational
Axis V:  GAF = 35-40 (current)
Recommend assess for Central Auditory Processing Disorder (CAPD ruled out, but does score significantly in several areas).
Kitty’s Emotional/ Social Age has been put at approximately 6 years.  She has been diagnosed with ODD (removed), bipolar disorder, ADHD, Complex PTSD, Attachment disorder (RAD- healing), cerebral dysrhythmia -brain damage in her right temporal lobe which controls memory, hearing, understanding language (receptive language), organization and sequencing, emerging Borderline Personality disorder, and learning disabilities (particularly in reading and math).  Verbal IQ - low average, but severe processing (65) and working memory issues (71), particularly when aggravated by loud, chaotic environment.   She was physically and sexually abused and witnessed much domestic violence as a child.  She has asthma in remission, allergies and chronic constipation. 
Rule out – Restless Leg Syndrome.
c. Current Meds
d. Current Emotional Issues
Ex.  K. tends to demonstrate symptoms of stress and anxiety in a variety of ways, which are greatly influenced by her perception of her environment (ex.  She tends to show both "acting out" and "acting in" behaviors at home and places she feels safe, but tends to only "act in" at school and in the community).   
Defense Mechanisms:
·      “Stalking”:  K. walks in the backyard for anywhere from 20 minutes to hours.  This is usually more of a power walk or determined stride.  She pretty continuously speaks and sometimes yells as she walks.  She frequently gestures and might even kick threateningly to someone behind her as though someone is there. 
·      Music and Dolls:  When she can’t walk, she likes to listen to music and play with her Bratz dolls.  When she was younger, she played dolls with B (adoptive sister), but we had to stop this because it was inappropriate for B although it appeared therapeutic for K to reenact or dramatize very traumatic scenes (abusive boyfriends, screaming parents, threats and intimidation…).
·      See “Acting In” behaviors (ex. Dissociating)
·      “Flipping a switch” – doesn’t appear to be her getting more control over her emotions, but instead feels more like dissociation. After she’s flipped the switch, she usually can’t even tell you what happened, let alone what she was upset about.
"Acting Out" behaviors:
·      Meltdowns K’s fairly frequent ‘temper tantrums.”  Usually involve defiance, throwing things, property damage, yelling, crying, screaming, cussing, and threatening herself and others.  Rarely physically violent after about 3 ½ yrs of attachment therapy, although she did punch Mary in the face 3/11.  Meltdowns are often triggered by request for K to do chores or K feeling she is being excluded, particularly when she is already emotionally upset.  Sometimes we can see them coming and head them off, but other times go from 0 to 60 in 2 seconds.  They can last 10 minutes to 3-4 hours, depending on the trigger, her emotional state, and the emotional state of the caregiver helping her deescalate.
·      Threats/attempts to run away has not physically run away in years, but often speaks of getting away from the family when she turns 18.
·      Threats/attempts to commit suicide these do not appear to be manipulative or attention-seeking, but real outcries of her misery.  However, she is very afraid of pain, and has always made these threats/ attempts with someone close enough to stop her. 
·      Threats/attempts to self-harm - self-harm tends more toward scratching/clawing/gouging arms and neck or using eraser on hands and arms.  Rarely leaves marks.
·      Threats/attempts to harm others physically (ex. punch someone in the face) and verbally (ex. spreading vicious rumors).  Threats continue, but carrying them out has decreased to practically never.
"Acting In" behaviors:
·      Manic/ Hyper: agitated; overly-sensitive; loud, pressured speech; over-zealous in relationships; loud, barking laughter; "vibrating" leg(s); popping knuckles (only does this when under stress); impulsive; difficulty concentrating…
·      Self-Harming: gouging skin with fingernails; stabbing with pencil; “burning skin” with eraser... technically this is an "acting out" behavior, but K has been known to do it secretly when stressed at school or church.  This behavior scared her and when she felt the urge, she often expressed concern to adults that she might self-harm and asked for supervision to prevent it.
·      Depressed:  Sad; crying; whining; begging to go “home” (meaning a fantasy of being back in idealized version of biofamily with no abuse).  Statements she wishes to die; statements or acting as though she wishes to "give up;" statements that others "hate her;" belief/ statements that she is worthless/ hopeless/ unlovable appear to always be an underlying feeling for K, that worsen at times.
·      Anxious:  hyper-vigilance; worry; quiet and shut down; perfectionism; overwhelmed; extreme compliance; obsessed with following the rules. 
·      Escape/Dissociate:  physically leaving room, going to psych hospital for respite, or emotionally "checking out;" unfocused; “oblivious”; changing subject (often apparently at random);  distracting (asks question or makes comment that changes the subject); napping/head down; complaints of exhaustion; "shutting down"; stalking (walking); swinging; escaping into books or the internet…
·      Somatic issues: aches; pains; exhaustion; hunger.  Has difficulty identifying correct emotional and physical feelings (has improved with therapy).  Is prone to emotional eating and ascribing real or perceived aches and pains to incorrect sources.  Ex.  If K is feeling depressed or suicidal (possibly because she missed meds, skipped a meal, hormones, chemical imbalance, was triggered by a traumaversary or event...), she might blame this on a recent event (such as a fight with her sister) that may or may not actually be related. 
·      Overwhelmed:  low frustration tolerance; disorganized; needs others to "chunk" assignments (break down into smaller more manageable pieces); forgets assignments or needed materials; hurries through assignments; requires frequent breaks to relax and regroup; frequent requests to leave the room; needs frequent redirection and individual attention; difficulty remaining focused and on task - needs frequent assistance/ reminders.
·      Social Anxiety – Social and emotional immaturity. Very worried about what others think about her.  Very concerned about following the rules and others following the rules.  Poor boundaries. inappropriate interpersonal interactions.  Inappropriate sharing/ venting with peers and others -particularly about abuse and perceived abuse (past and present);  participating in or allowing physical and/or emotional teasing/ bullying; inability to recognize other's "boundaries" and bothering them; perceives others as threatening or abusive; tattling about rule breaking; verbal lashing out; gossip (has spread vicious rumors regarding siblings/ friends and accused them of doing the same); threatens or hits peers (yes, this is an "acting out" behavior, but it is one that K has acted on in school and the community).
e. Current Physical issues
Ex. Weight Issues:  At 5’5” K weighs 186lbs.  She wants to be anorexic, but tend to gorge when she is emotionally upset.  At age 12 she was underweight until she was taken off Concerta and put on Seroquel.  She gained 70lbs in 6 months and has never been able to take it off.
Sleep Issues:  K wakes frequently during the night.  She talks and sometimes screams and sits up in her sleep.  Often she sleeps 10 to 12 hours a night, but she is VERY restless and frequently falls out of bed.  Other times she can’t get to sleep until the wee hours and/or is up frequently.  Need to rule out restless leg syndrome (see report from 10/30/11).   She stopped wetting the bed at age 14 (although she will still have an occasional day or night time accident).
Esophoria occasionally, especially when she’s tired, K’s eyes drift inward causing double vision, head aches, and possibly other symptoms.  This doesn’t happen regularly enough to need prisms on her glasses.
Chronic Constipation:  Even with regular stool softeners, K struggles with compacted constipation issues.  Currently supposed to take Miralax twice daily, but is noncompliant.
Acid Reflux:  Currently not on unmedicated.
Allergies:  Seasonal, environmental and food allergies (citric acid and all acidic fruits). Takes Loratadine.
Nasal Congestion:  Chronic.  Supposed to take saline, Patanese and Nasonex, but refuses.
Joint Issues:  Years of Geodon use has caused joint pain, and it was removed when she started showing signs of TMJ ( her jaw would hurt and feel frozen and she would start drooling).
Chronic UTI:  Frequent, possibly related to poor hygiene or constipation.  Had surgery at 9yr. for her tiny tubes and frequent UTIs.
Acne
f. Discipline Program (FAIR Club, RRHAFTBALL)  
Charts and Levels:  K has a simplified chore chart with a few chores (including basic hygiene) broken down into concrete steps and spread out over a week-long period.  We attempted a basic Level system with very concrete (mostly chore related) responsibilities, but this has been discontinued as K had a difficult time getting past basic levels, is triggered by chores and correction, and was frustrated by her inability to access higher privileges due to being unable to complete the most basic of responsibilities on a regular basis.
RRHAFTBALL (pronounced raft-ball) – stands for Responsible, Respectful, Honest, Attitude,  Fun To Be Around, Loving and Learning.  Is what is expected of all our children.  Not being RRHAFTBALL usually means child is not trusted and child goes (or stays!) in the FAIR Club.
FAIR Club – The family discipline method.  K hates it and it frequently triggered a meltdown.  Rarely used now.  Children are expected to be RRHAFTBALL and if they break a rule (pretty typical household rules) they go in the FAIR Club, which generally consists of a writing assignment that is chosen based on logical consequences and therapeutic goals, with a focus on accepting responsibility for choice and restitution.  We stopped using this with Bear and K as we learned that they function best when their whole life is generally structured as though they are in the FAIR Club (fewer choices, lots of structure, concrete rules and expectations…).  

II.            Treatment History {chronological order, use dates or ages wherever possible}
a.    Medications
b.    Assessments
c.    Treatment Types
d.    Treatment Providers
e.    Treatment Facilities
III.           Cast: 
a.    Adoptive Family
b.    BioFamily (including Biomom and Biobrother diagnoses)
c.    Foster Care
d.    Schools
e.    Other
IV.          Basic Timeline {Brief chronological outline format - including major life-changing events - like moves, birth of siblings, death of family members, hospitalizations, foster care,  suicide attempts...}
V.            Detailed Timeline {Much more detail regarding incidents, and includes things like what a "meltdown"/rage looks and sounds like (I wrote down an episode as close to word for word as I could immediately after an incident).

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