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).

It's amazing what people will believe when it's in writing!

It doesn't matter how super calm and logical you are when speaking. 
It doesn't even matter if they know you're the one that wrote the document
 -- people will believe what they see in writing.

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...

PUT IT IN WRITING (And keep it short and simple)

Current Meds and Diagnoses Page! (a one-page document about your child designed to give people a quick summary of your child's needs.)

*****Other helpful posts - 

How to Get Your Document Read! - Persuasive Writing

Advocating, Some Notes

*****

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 reason we deal with a lot is an actual distortion of the events in the child's mind (they remember the feelings and often associate it with things that happen in the past). We try to remind Kitty that her perception is off when she describes events 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.

Documentation can protect us from accusations of abuse by someone who is looking in at (judging) our life from the outside:

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

"My child is under the care of a medical and/or therapeutic professional. (This "professional" could be you as the therapeutic parent by the way!)

Business cards that can be handed out when a child is having a meltdown in public.

Types of 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 whoever 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 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. 

Reports from Others
These can include incident reports, notes from teachers, psychiatric evaluations, IEP meeting notes, letters from therapists/ psychiatrists, discharge instructions, insurance documentation (oftentimes RTCs and other people and programs being paid for by insurance are required to send progress reports and discharge reports to the insurance company), letters from medical health professionals confirming diagnosis(es) and treatment...

Keep this documentation! It can come in handy when trying to get your child services. 

Don't forget that you can ASK for this type of documentation. 

• When my son needed to go to court to face criminal charges, I got a letter from his psychiatrist stating his IQ and diagnoses (we were hoping that he would get court-mandated therapy or community service rather than jail time). 
• At the end of the school year, A program my son was applying for had a questionnaire for his teachers. The teachers were willing to write things like "reading on a second-grade level" that the school had never before been willing to acknowledge and especially not in writing. I copied this questionnaire (and added a few additional questions and gave it to my daughter's teachers, implying it was needed for a program that she was entering. Unfortunately, my daughter's teachers were a little more aware/ intimidated by the school administration and we didn't get anything new or particularly useful. Still, it was worth a try!
• When my daughter needed a special school program for kids with emotional issues, we asked for letters from her psychiatrist, the psychiatrist at the psychiatric hospital she'd been to multiple times that year, and her therapist. These were submitted at my child's IEP meeting. The school district elected to ignore them and we used them as documentation to file due process (kind of like suing the school). We got her in the program she needed.

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 afterward (you might want to take notes during if possible).

Use 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, I think, Ms. So and So said he was doing this a few weeks ago if I remember right..."  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.

A little trick I've learned - write emails to the kids' therapist, teacher, school administrator, caseworker... whoever needs to hear it,  about whatever the latest incident/ issue might be, and blind copy (bcc) yourself and store these e-mails. (You can also forward/ email something to yourself just 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. {Finding and Funding RTC}

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 immediately 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 to the psychiatrist why we needed the diagnosis and he added it. It was frustrating that I had to ask, but at least now I had it in writing.

A Trauma Mama's Story:

My daughter was released from juvenile detention. Children services/ the court decided the best place for the child was back in my home with our younger, traumatized children. We were to have a social worker placed in our home to monitor us and to tell me what I'm doing wrong as a parent and how I could change to fix it all. 😠. 

My child did okay for a couple of days but behaviors began to come back, of course. My child was disrespectful and defiant and refused to just stop, but was not violent in a way that the police would get involved. Of course, the Parole Officer (PO) was nowhere to be found, the social worker never showed, and no one is answering or returning my calls.

A Fellow Trauma Mama's Response:

So we have been right where you are now. Start sending emails to the PO, social worker and prosecutor daily if you have to. Did they give you a victim advocate? If so then email them instead of prosecutor. CC them all so they know you are communicating with everyone. Don't call, just email. That way there is a record.

In each email, state that you are living in fear, state the ages of your littles, the behaviors you have seen in the past and what you are seeing now. Also list what you were told would happen and what is actually happening.

Email until you hear back from each of them. And when your child gets violent, of course call the cops. It is like a full time job getting them to do their jobs. I am so sorry. The more you document and let all parties know about the failures going on, the quicker they will respond. It sucks but it works. Good luck!

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 for her.


Documentation Works Both Ways! 
Use their documentation to hold them accountable and get services. I often took psych reports including recommendations to places like my child's school and demand that they put these accommodations into place. They were also useful with or our insurance company by providing proof that the child needed these particular services when demanding they pay for programs/ therapy that met these goals (such as Hippotherapy or an expensive RTC that specialized in DBT therapy). 

I know that most of the psych eval recommendations were "cut and paste" crap, but I could still use them to my advantage.

 Example: 

Recommendations:

1. A two-prong treatment approach that includes both individual and family therapy/ parent training is strongly recommended. Treatment will be best geared to concrete, face-valid, short term goals establishing control and adaptive coping behaviors. At this time, it is important that therapeutic work address establishing a solid emotional vocabulary to help him directly express his feelings in an appropriate manner, developing emotional awareness...... blah, blah, blah...

I might use this recommendation to get:

• DBT therapy versus whatever random talk therapy intern assigned to my child, because it specifically works on developing emotional awareness and vocabulary.
• Forcing the school, adoption agency, or insurance company to find and fund an alternate placement for my child that can better help my child get the help he/ she needs (Alternate Placement and Crisis Plans) or an RTC (Finding and Funding an RTC). 
• Even though this recommendation is more about therapeutic goals, I would probably use it to get IEP academic accommodations in the classroom that are focused on concrete, short-term (chunking) goals. Meaning, my child won't be handed a long-term project at the beginning of the year and expected to be able to complete it themselves. Instead, the assignment would be broken into steps and each step would have its own accountability.
• I would also use it to get my child more emotional accommodations at school. Such as a quantifiable way for my daughter to let the school know she is experiencing anxiety or is feeling suicidal or like she wants to self-harm. Anxiety Scale. Crisis Plan.

You know your child best! 

Current Meds and Diagnoses Page
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!

People believe what they read! 

Even if they know that you wrote it.

I have several different types of documentation 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 (New School Year 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 (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 final 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.

How to Get Your Document Read! - Persuasive Writing


VIDEO CAMERAS and PHONE VIDEOS
Child Privacy. Be super careful about your child's privacy. Don't put 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 to record 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 (ie. don't put it in an email that anyone can forward).

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



TIMELINE

The timeline is more of a "living document," that I keep on my computer (they are over 60+ pages each so it's not often something I share)!   It's more of 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 Informationa. Developmentb. 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 had a 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 - including 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)

Neuropsych assessment (04/17/12): Recommended assess for Central Auditory Processing Disorder (Audiologist 8/12/12: CAPD ruled out, but scores significantly in several areas).

Kitty’s Emotional/ Social Age has been put at approximately 6 years. 

Kitty 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 an 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 a 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 an 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 tends 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, headaches, 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).

Dressing Your Truth - NOT an advertisement

Raising kids with RAD leads a LOT of moms to emotional eating.  (Food as a substitute for the love the kids can't give you).  I have done many things to fill my love tank and feel better about myself, including eating a LOT!).  I tend to be a comfort eater and have gained and lost about 70lbs several times over my lifetime.  Right before we adopted I'd lost that 70lbs on the South Beach diet and was feeling pretty great.  The first few years with Kitty and Bear put it all back, and then some.

Last year, I went on MyFitnessPal.com and lost about 30lbs before I hit a plateau.  I was feeling pretty good about myself.  I recently started doing physical therapy for some hip problems, and while I haven't lost any more weight, I am more toned.

Recently I found a program that helped me feel better about myself the way I am right now (although I'd still like to lose those last 40lbs) .  Dressing Your Truth (http://dressingyourtruth.com/) is only a quasi-scientific program, and it's really focused on selling you their full program, BUT I found that after I figured out my Type (which is free!), I was able to figure out (through research on the internet) the colors and shapes that look most flattering on me.  PLUS, it made me feel better about some personality "quirks", I've always felt guilty about.

I'm a Type 1, Air, which are people who tend to be bright, animated, and high energy (when I'm not totally stressed by raising RAD kids!).  One way of describing my type is full of ideas, but not always great on the follow through.  I grew up around other Types (mostly Type 2, the planners/ list makers) and felt super guilty about not being like them.  Kitty is also a Type 1, and I found myself negatively judging her the same way I felt judged.  This was a very freeing program.

I got rid of all of my black clothing (only one type looks good in black which is a very calm, quiet color), and love that my new figure means I don't have to feel guilty about getting new clothes, cause I was going to have to do that anyway.  I did the Color Me Beautiful color typing thing many, many years ago and I'm a Winter, which means I should look good in Black, White, and Jewel tones, but I've found that dressing according to my personality actually makes me feel better and I get lots more compliments (which speaks to my love language of Words of Affirmation).

Now that I'm sewing again, I love being able to make clothes that flatter my figure, in bright, fun colors.

FAIR Club assignment

We discovered Kitty has been neglecting to feed the dogs in the morning.  It’s apparently been happening fairly frequently.  Ironically, last week we'd praised her for being fairly consistent with her daily chores (with prompting) and even taking on a few extra chores over Spring Break without major meltdowns (this is a major accomplishment).  Of course immediately after that praise-a-thon in therapy, she pretty much stopped doing chores, doing only one or two with multiple prompts and me refusing to let it go.  I’m thinking it’s time to drag out the FAIR Club again since she’s semi-stable right now.  

In the past, we’ve required a child who forgets to feed the dogs to take over the whole chore (morning and night instead of just mornings).  We’ve also removed the privilege that they were abusing instead of doing the chore (ex.  Bob was playing Bratz instead of feeding the dogs so we took the dolls and she had to earn them back by doing extra chores, $5/doll).    

Kitty says she is forgetting to feed the dogs because she’s too busy in the morning getting ready for school (of course during Spring Break she had to be prompted to feed the dogs and take her meds).  She has no excuse for not feeding them when she gets home from school, except that she’s forgotten.  Another issue is that her sleep is sporadic at best, which can cause anxiety and memory issues.  She's under the care of a sleep specialist, but he needs her to fill out sleep logs, which she "doesn't have time to do in the mornings."  

Some logical consequences won't work, like:  we can’t take away her food (like snack after school), because food’s a huge trigger for her.  I’m afraid to give her the whole chore of feeding the dogs, because she might forget BOTH meals and that's not fair to the poor dogs.  Restitution doesn't really work with dogs.

So here’s what I’m thinking:

• Put her in the FAIR Club (which includes earlier bedtime, no electronics – including MP3).  This will be the first time she's been in the FAIR Club for years, because it's such a huge trigger for her, but she's fairly stable and now's the time if we're going to do it.
• Give the chore to a sibling, and she takes their only daily chore - which is loading the dishwasher (unfortunately dirty dishes has always been a trauma trigger for her, but honestly she's got to learn to do it sometime).
•  Earlier getting up in the morning so she has more time to get ready and do her sleep log.  Hubby will wake her up at 7am (so she can't sleep through her alarm like she usually does).
• Take meds, including sleep meds, at 7:30pm instead of right before bed at 9pm.  Hopefully this will help her get to sleep sooner, and will allow her to wake up earlier without feeling groggy.
• Writing assignment:  Sleep logs consistently for 2 weeks.

When I presented this assignment to Kitty, she didn't take it well (not that I expected her to!).  Of course she accused me of WANTING her to become unstable.  I told her straight out that if this is going to send her over the edge then, yes, I want her to become unstable now, rather than a few weeks from now when she turns 18 and would have to go to an adult facility.  

Next she denied having missed feeding the dogs more than once, and begged for another chance.  I let her know that while the dogs were the trigger (and I didn't believe this was the first time), there were multiple reasons for this task.

She was able to listen to the whole assignment without a meltdown (although it wasn't pretty!), and we came to a compromise about how the FAIR Club would work.  24 hours is the minimum a child can be in the FAIR Club, and on that I wouldn't compromise, but I did say that some of the FAIR Club essentials (like early bedtime, no electronics, assigned seating, not being able to choose what is watched on TV...) could stop after 24 hours IF she was compliant with the rest of the assignment, including being RRHAFTBALL.

At the end of the conversation, Kitty stormed upstairs to her bedroom with a few "choice words."  We could hear her cussing and crying for a little while, then it got quiet.  A couple of hours later, she sought me out, apologized for the language, and let me know that she'd found the only way she could calm down was to take a nap.  We talked briefly about why that wasn't normally a good choice (she already has sleep issues and has been reminded by her sleep doctor that naps are a bad idea), but there were few options she can actually utilize independently so I let it go.

She did the dishes and a couple of other chores (I wasn't home so I'm not sure how many prompts this required) so I'm going to allow her to take her iPod to school tomorrow since she has a field trip with a long bus ride.  Tomorrow though apparently she needs a lesson in loading the dishwasher, since Hubby claims she allowed the water to run for 1 1/2 hours! as she rinsed the dishes to go in the dishwasher.  We're in drought conditions here with mandatory water conservation so that's NOT a good thing.

At what point do you let go?

Many of my friends are struggling with children who are chronologically on the cusp of adulthood, but do not have the skills needed to be successful... in fact, most of their children are determinedly on a rapid self-destructive path.

It feels like I'm in the middle of the ocean holding my son, Bear, like a lifeguard would.  We did everything we could to teach my son to "swim," and he just couldn't learn (too much damage/trauma).  For as long as I hold him, he hates me, is actively fighting me, and is convinced he can do it all on his own. His struggles could drown me and almost have.

I know that the minute I let go, he will flounder for a little while, but will eventually sink to the bottom of the ocean.  How can you let go, knowing your child will drown?  At the same time, I know I cannot hold him forever.  At what point do I let go?

A fellow Trauma Mama said it well:

The fact of the matter is this - Bear is going to drown no matter how much you do for him. The only difference is that you are going to drown right along with him if you continue doing the things you're doing. He is very clear that he doesn't want your help. He is even making things worse in his zeal to get you off his back. As long as you are giving help and advice, he is convincing himself that he knows better, is smarter, and can handle it all himself - and hating you for it. What's wrong with letting him know that you are going to step back and let him handle things, but that if he needs your assistance with meds (or whatever you decide the boundaries to be) that you are willing to help in any way you know how - but only if he asks. Maybe after a few months, he will concede that things aren't going as smoothly as he thinks.

His perception of how he's taken care of himself all this time on his own is only a small indicator of his distorted thinking. The one thing I've learned (the hard way over and over) is that their reality doesn't really have to be based on the facts, and when it isn't, there is no reasoning with them. I know it is so painful to watch, but this is real life and unless you have guardianship (and lots of times even when you do), he is legally able to make his own decisions - which he's been doing. YOU are doing all the work on improving his life and he's fighting you every step of the way. 

*************************

After many years of Bear struggling/fighting against my help, a big part of me wanted to just let him go but I felt so guilty about it.  I'd already stepped back a lot. I feel he's in the best place he can be (while incarcerated he's got 3 hots and a cot and can't hurt anyone) considering that he doesn't have the real-life skills and mental/emotional development to do anything else. He's legally an adult.  He chose to move out.  He chose to move back with his biofamily.  He chose to break the law (many laws actually). He's in another state, and he's mostly safe in jail/prison.

Hubby is the one who is making me feel guilty about just totally backing off.  Not directly, but I know Hubby feels that because Bear can't really handle life on his own, we shouldn't allow him to push us away.

Bear's going to self-destruct.  It's inevitable.  We've been delaying the inevitable for years.  So where is the line?  Legally, we have no obligations.  Morally?

************************

Stop Walking on Eggshells

One thing that has really helped me with understanding why my son acts this way, and setting boundaries, was one of my favorite books, Stop Walking on Eggshells. I reread it often. 

This book is for people living with someone with Borderline Personality Disorder (which is an "adult" disorder, but there are a LOT of similarities to kids with attachment and trauma issues). Some people say that BPD is what RAD turns into when our kids turn 18 and technically "outgrow" the diagnosis of RAD.

The first half of the book gives insight into WHY people with BPD act the way they do, which helped me with understanding what my kids needed and why, so I could better decide what to do about it. The second half of the book is PRACTICAL ADVICE! Which I found to be really on target.

It's a quick and easy read... except that it's hard to process. Everything hit home so closely, that I found myself reading it in small chunks. (I kept it in my car to read during the kids' doctor appointments, while waiting in line, anytime I had a minute alone.).

This book also made me understand why Self-Care is so important and made me feel less guilty about prioritizing it. 

Other Posts About Parenting Adult Children

You Have Not Failed

I also reread this post, You Have Not Failed, whenever I feel like there was something more I could have done and this was my fault.

Detachment Parenting An Adult Child

Therapeutically Parenting the "Adult" Child

Caregiver Fatigue - 

Handling Continuous Traumatic Stress(CTS) - When Your PTSD is Not Post/Past Yet**

 

Online Support

I belong to several online support groups for parents dealing with adult children with trauma, attachment, FAS, mental illness... Some of these groups help parents cope with their child's special needs and some are more about helping parents heal after the child leaves. If you'd like to be connected to one or more of these groups, please leave me a comment with your email (it will not be published) and get you the information you need.  

For the Adult Child Who is Incapable of Being Independent
We struggled a LOT with how to handle Kitty becoming an "adult." While neither she nor Bear is ready to be independent, fully-functioning adults, the difference is that Kitty's disabilities are severe enough that professionals see the need to allow us to provide the support she needs (rep payee for her SSI finances and possible legal guardianship) and Kitty is able to *mostly* accept that support. 

These posts have more about how we handled getting Kitty the help she needs (which is still a work in progress) -
How To Get Treated Like an Adult.
Parenting the Special Needs Child

Getting SSI For Your Adult Child

Marriage and SSI Benefits

************************

Up-Date on Kitty:

Kitty is in a long-term, committed relationship with a man Hubby and I like. She is happily living with her significant other, 2 dogs (one of which is an emotional support dog), and 3 cats. She and I have a healthy relationship and I love that she lives nearby (but not so close that we are in each other's laps!). I'm still her Rep Payee and provide semi-daily emotional support via phone/text/message. She is unemployed but has mostly accepted that working, even part-time. She continues to work on processing her traumas and her emotional growth. In short, I'm very proud of her and think she's awesome!

Up-Date on Bear:
I decided to back off on the case management/ advocacy stuff. Bear has now been incarcerated for almost 5 years. He got out briefly after 3.5 years in, but committed additional crimes and violated his parole, then got in more trouble while in prison and was moved to a maximum security facility. So he's back in prison for who knows how long.

I finally realized that Bear needs a LOT of Structure, which we cannot legally provide him. The only place for an adult to get the amount of structure he needs to function and feel "Safe," is the military or prison. Bear has never been eligible for the military due to his mental health diagnoses. Therefore, he will be in the biggest mental institution in the country (jail/ prison), off and on (mostly on) for the rest of his life.

Here's what we decided to do:

• We accept his collect calls 2-3 times a month (they're very expensive). Early on, it was weekly, but it's tapered off over the years.
• I will usually reach out to his latest love interest for him, but the majority of the time I warn them that he's a mess, and they need to seriously think about getting involved with him. Most of the time, they're a mess too. {It still amazes me how many relationships, and even engagements, he's had while incarcerated. I do have reason to believe that a few of them are exaggerated in his mind.}
• We send him a small amount of commissary money each month.
• Bear cannot leave the state he's in until he's off parole, so he will most likely never be able to come "home." This helped me feel safe enough to finally heal from the PTSD I struggled with.
• I try to write him letters and send him the pictures he requests every time he moves to a new facility, but I suck at writing letters, so I haven't written him much.
• We are still here for him and care about him, and he knows it. However, we have set boundaries and are sticking to them. 

Up-Up-Date on Bear:

Bear has been incarcerated off and on now for 10 years. I don't think he's been out for more than 6 months at any one time.  I rarely feel guilty anymore about not answering Bear's calls. Even Hubby has accepted that Bear is incapable of attaching to us, or anyone, and only calls when he wants money. Hubby occasionally answers Bear's collect calls from jail/prison but rarely gives him money and usually only small amounts on his birthday and Christmas.