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!

Tuesday, October 27, 2015

"If you find out I'm not perfect, you'll leave."

"If you find out I'm not perfect, you'll leave." 
Our kids feel deep down that they are unworthy and unlovable.

When Kitty trusted me enough to admit this fear out loud, I think she was finally ready to start healing. I feel the best thing I did was reassure her that I already knew she wasn't "perfect" and I still loved her. That I wasn't going to leave because she didn't/ couldn't behave and sometimes took joy in causing chaos.

I believe that was what both my kids with RAD were the most scared of - that they were unlovable and unworthy of love. That if people found out what they were "really like, " then they would leave him/ her. At the same time, they needed control of the situation so they would push us away, feeling it was inevitable that we were going to leave so they wanted to be the one leaving. {I think this is also one reason why they try to go back to birth family and at the same time the reason why it terrifies them - they need to prove/ disprove that the people who rejected them were right (or wrong)}


What we did: 

I constantly reassured my kids that I would help them deal with these feelings (and find others to help) and that I wouldn't allow them to push me away. I also reassured them that I knew these behaviors and feelings were caused by their "issues," and that as they healed the behaviors and feelings of fear and wanting to hurt us would get better.

At the same time, I set up boundaries/ rules/ structure that let them know they were safe (this is a perceived sense of safety - nothing to do with real life physical safety). I let them know that while they were healing, I would be there to keep them and the rest of the family safe. That hurting me and the family was not OK, and that I would not allow it.

I took away most of their control (even about little stuff like when they would be eating and where they sat in the car), and by doing so they knew that I was strong enough to handle them and love them despite their issues. It took me a long time to understand that they didn't just need someone to love them unconditionally - they didn't believe in that, they needed someone to make them feel safe. Their favorite teacher was the strictest teacher, one of the staff in the behavior unit at school. She tolerated no nonsense, but they knew she really cared about them.

They were afraid (deep down) of the teachers/ people that they could manipulate, that they could fool into not realizing that the child was not perfect and was "unlovable and unworthy of love." People that gave them a blank slate every day, that forgave them every time, that didn't hold them accountable for their actions... those people weren't strong enough to keep them "safe."

I think me staying, no matter what they did, was a big part of what helped them heal, but I think a bigger part of that was providing the structure and support needed to make them feel safe and know that someone else was in control. That was, I think, one of the hardest things I have ever done. It was not the way I had parented my other children, most of the people involved in the kids' life thought I was overbearing and controlling, and it was NOT my personality (I'm a pretty laid back unstructured person), but they NEEDED that structure and loving support to heal.


But things were going so well!

I think this is related to why a kid who is doing well, suddenly seems to sabotage their success. Sometimes I think when things are going too well, and my kids get scared and pull back.

This could be due to:
  • A traumaversary, birthday, trauma trigger, holiday, change in routine...
  • They run out of emotional reserves. Spoon Theory. This is why a kid can appear to hold it all together at school, in public, or at a friend's house, convincing you that they have control over the behaviors so should be able to do it at home too. 
  • They know things are going to "go wrong" so they self-sabotage things to take back control - by controlling when it happens it makes them feel in control and safe
  • The need to protect themselves from what they consider your inevitable rejection by rejecting/ pushing you away. 
  • They don't feel they deserve for good things to happen.
  • Historically when good things happen, they are followed by bad things (usually involving great loss) - so our kids avoid the good things to make losing them hurt less. 
  • They're afraid that if they're doing well, then you'll raise the bar on your expectations and expect them to keep it up (which is a lot of pressure).
  • They "know" they're going to mess up, so they go ahead and get it over with.
  • Good behavior, often leads to higher expectations and more freedom and privileges. Privileges that the child may be afraid they can't handle (actually may not be able to handle!).
    {Bear NEEDED a high amount of structure and support to feel safe - he did very well in a structured, supportive environment and there was a lot of pressure put on us as parents to "reward" that success by putting him in less restrictive environments - where he inevitably failed. I personally believe that failure was often (sub-conscious?) self-sabotage to get put back in the more restrictive environment.}


Why Do They DO That?!      
FEAR!

ATTACHMENT IS SCARY

The following is the list of common beliefs of children with attachment disorders (Katharine Leslie, When a Stranger Calls You Mom). I have to say Bear definitely believes most if not all of these. Kitty believes a lot of them.

  • Those who love me will hurt me.
  • It is safer to get my needs for closeness met by strangers or those who are not important to me. (Can you say, "Kleenex girls"?! I knew you could.)
  • I have to look out for myself, cause nobody else will.
  • I have to hurt others before they hurt me.
  • I lose myself (I will die) if I become who you want me to be (like you).
  • I might as well lie, no one believes me anyway.
  • I'm forced to lie when people ask me questions.
  • People should stay out of my business.
  • If I want something than I should have it.
  • If I see something I want I should take it.
  • People make me mad.
  • When I'm mad I don't care who gets hurt.
  • People deserve what they get.
  • If I don't get what I want you are to blame.

The Frozen Lake Story
"In order to understand what an unattached child feels like, one must understand his perspective. Imagine that you are the young child who must cross a frozen lake in the autumn to reach your home. As you are walking across the lake alone, you fall suddenly and unexpectedly through the ice. Shocked and cold in the dark, you can't even cry for help. You struggle for your very life, you struggle to the surface. Locating the jagged opening, you drag yourself through the air and crawl back into the woods from where you started. You decide to live there and never, never to return onto the ice. As weeks go by you see others on the ice skating and crossing the ice. If you go onto it, you will die."
"Your family across the pond hears the sad news that the temperature will drop to sub-zero this night. So a brave and caring family member (that is you, the parent!) searches and finds you to bring you home to love and warmth. The family member attempts to help you cross the ice by supporting and encouraging, pulling and prodding. You, believing you will die, fight for your life by kicking, screaming, punching and yelling (even obscenities) to get the other person away from you. Every effort is spent in attempting to disengage from this family member. The family member fights for your life, knowing you must have the love and warmth of home for your very survival. They take the blows you dish out and continue to pull you across the ice to home, knowing it's your only chance."
"The ice represents the strength of the bond and your ability to trust. It was damaged by the break in your connection to someone you trusted. Some children have numerous bonding breaks throughout their young lives. This is like crashing them into the ice water each time they are moved, scarring and chilling their hearts against ever loving and bonding again." By Nancy L. Thomas

THEY DON'T FEEL SAFE 

For more about Safety and why it's essential to a child's survival -  see this post Safety First. Children NEED structure and caring support to feel safe and start to heal.   This feeling of safety is not about physical safety and often not based in reality – it is a perceived feeling of safety.

Just like our kids keep using old defense mechanisms that are no longer needed, our kids with scary, traumatic early childhoods often get stuck in the feeling that they are not safe.

This is a life or death feeling! 

A child who feels unsafe is a scared child. A scared child will act out (or act in) to try to feel safe again.


Feeling unsafe is not rational. You can't explain to the child that they're safe now. Logic doesn't work. Feelings of being unsafe can pop up at the most unexpected times, like a PTSD flashback. Generally this feeling of being unsafe will fade as our child heals, but there will probably always be times when it comes up again.

THEY'RE STUCK

My kids tend to behave only because they fear the consequences of being caught (if they understand consequences at all) rather than doing something because it's the right thing. Lying and Stealing. This is not because they're bad, or manipulative, or hate me, it is because they are stuck at the bottom of  Maslow's Heirarchy of Needs. Their fear keeps them feeling like they're in a war zone  - focused only on survival.



Maslow’s five levels of hierarchy are:
1.) Physiological or biological needs. These are the survival needs — air, water, food, sleep and procreation. These requirements are the basic needs of human existence.
2.) Security or safety needs. These needs include health, financial security, shelter and the assurance of living in a place where one does not feel threatened.
3.) Social needs. Maslow felt that once physiological and security needs were met, people start looking for love, friendship and community. Families, religious groups and social organizations fulfill the need to belong.
4.) Esteem needs. Malsow noted two types of esteem needs — self-esteem and esteem from others.
5.) Self-actualization needs. This is search for becoming his or her "best self." Unlike the lower levels of the hierarchy, this need is never completely met as there are continuous new occasions for growth. Maslow stated only about 2% of the world population is in the self-actualization state.

These first four levels of hierarchy are referred to as "Deficit needs," sometimes called D-needs. The theory is that if a person doesn’t have enough of something in these four levels, he or she would feel the deficit — or need. If one does have enough, it is often times not noticed. Maslow has also termed these first four categories as survival needs, as humans instinctively attempt to cover all of these. If one of these needs was not properly met when a person was a child, that person may fixate on the particular need throughout the rest of his or her life.

With D- needs, once fulfilled you don’t often notice them. The B-needs however, become stronger as they are realized. These are the apex of Maslow’s hierarchy and are called the "Being Needs" or B-needs. When the first four D-needs are met, then a person begins to search for becoming his or her best self.



Why they Act Differently When They're Away From Home

My kids have what I call "Charming RAD" officially known as Disinhibited RAD. That means they would literally rather die than let others see that they are not perfect --- because it feels like life or death to them. People pleasing is one of the strongest defense mechanisms they have. Most have an uncanny knack for knowing what they need to do to make people like them and want to take care of them - even if they have a total lack of empathy and almost no social skills.

With parents, this usually starts as a honeymoon period. Once they start to trust us, we start seeing more of their imperfections. It sucks, but it means they trust us more than they do other people in their life (most of the time I wish they didn't trust me that much!).

At school, in public, or at a friend's house, they appear to hold it all together, convincing you that they have control over the behaviors so they should be able to do it at home too! Unfortunately that's not the way it works. Imagine if you have to give an important presentation at work, but you have the flu. You get up, give your presentation, and then go home and collapse. Our kids run out of emotional reserves. Spoon Theory. They're living in a life and death war zone in public, and can only hold it together for so long,

Why kids act differently in RTC (or psych hospitals, school or anywhere else):
  1. YOU are not there. You are the symbol of all mom caregivers, and you dare to try to “inflict” your love on him. In an RTC, our children don’t have to deal with the stress of family and emotions, which may reduce enough of their stress to a point where they can handle it better.
  2. Too “Broken” to Function in a Family. Some kids do better in RTC. They NEED an environment without emotions and long-term consequences, and need people to keep them, and those around them, safe because they are not capable of doing it for themselves.
  3. Trust. The child trusts you enough to “let his/her hair down.” They really do believe that you love them enough to put up with their behaviors. Which is true, but sometimes I wish mine didn’t trust me that much! My daughter “holds it together” all day by cramming everything inside and ignoring it – then she gets home and lets it all out on us. Those feelings have to go somewhere, but they can also hold it for a long time when they know it’s life or death (which it usually feels like it is).
  4. Honeymooning/ Shut Down/ Dissociation. RTC/ schools, etc. are scary places. My daughter will lie, shut down, dissociate, escape by sleeping, “talk the talk” (years of therapy and being in hospitals can teach a child all the right buzz words)… anything to get through this and get out. With the right meds and enough motivation, they can hold it in for months – up to a year depending on whether or not they see that it’s working.
  5. Structure and Support 24/7.  Making decisions and choices is hard for our kids. They NEED structure and support. Concrete expectations make them feel safe. In an RTC, there are very few gray areas for the child to have to figure out. They have fewer decisions to make (bedtime, where to sit, what to do next...). My daughter feels “safer” when someone who knows her issues is monitoring her 24/7 -- so well supervised that she doesn’t have to stress about making bad choices. She can’t suicide, self-harm, use drugs or tobacco (supposedly! – my son found a way to sneak chewing tobacco). My son deliberately acts out at public school until he gets sent back to the special school, because he needs and craves the structure and support provided by the special school. We cannot always provide the structure and concrete expectations that our kids need/ crave, especially over the long-term. RTCs have much better staff to child ratios and back up than we ever could! It is not possible to live real life like an institution (although we sometimes come close in our house), especially when you have other special needs kids and are dealing with life.
  6. Staff is Easily Manipulated. The staff is used to being treated like scum, so any child that is nice to them… They don’t necessarily recognize or care that it is manipulative. Generally “Charming” RAD kids hug and are warm and sweet to everyone (as long as they aren’t family). This helps the child feel safer. The child doesn't actually trust or care about these people, but they are pretty believable so the staff, case managers, teachers… have no clue. They want to protect this sweet, loving child from obviously crazy, overly strict parents with Munchausen Syndrome By Proxy. Which feeds right into what the child wants.
  7. Not Their Problem. Short-term focus and our child’s best interest is not the staff's problem, especially in the long-term. Staff can avoid telling the kids what they don’t want to hear (like “no”). So our kids behave better, because they like people who rarely tell them no. No one cares about long-term consequences (except you!).
  8. Closed Environment that is impossible in the "real world." This is a locked campus that goes way beyond child proofing, so staff don’t have to deal with watching him and correcting him when he gets into things that could hurt him. There are no small children or pets running around that the child could sexually abuse, torture, torment, or just be cruel to. They don’t have to protect a whole family, just a bunch of kids who are not exactly perceived as defenseless. 
  9. Concrete, Absolute Rules - Your child KNOWS he has little to no flexibility or “wiggle room” on most subjects so they don’t bother to argue with staff about bedtime, computer time, respectful words…
  10. It’s Not Personal. It’s just a job. Staff can walk away. They go home at the end of their shift. They can quit. They can let someone else take over for awhile… we have to protect ourselves and the rest of the family, and that influences how we handle our child. Staff don’t have to do anything that isn’t in their job description. If someone vomits that’s the job of the cleaning staff. If the staff person has the flu, they can take a sick day. We have to deal with everything our children throw at us, no matter what, and it often hits home and gets personal.
  11. Nurturing is Optional. Unlike an RTC, when a child is rude, horrible, scary, threatening, tries or succeeds in hurting us and/ or a family member, we have to continue living with this child. If a stranger, or even our significant other, treated us the way our child does, then most likely that person would go to jail, and everyone would be encouraging us to leave him, but when it’s a child, we’re expected to handle the emotions and stress, not show it in any way to our child, and be warm and loving all the time.
  12. No Social Skills Needed or Required. No one expects the child to care about anyone else’s feelings. Empathy, sharing, cooperation is rewarded as something above and beyond. 
  13. School is Easier in an RTC. Lower expectations and lots of one-on-one instruction. No one knows or cares about your child's actual capabilities. The child is not expected to live up to his or her "potential."
  14. Blank Slate. If the child messes up, they get to start all over again with a blank slate the next day. No one cares what he/she did last year, last summer, or even last night. No grudges, no expectations, no hurt feelings, no holding the child to a higher standard….
  15. No Personality Conflicts. If someone doesn’t like your child, or the child doesn’t like them… the child can just wait, they’ll leave and/or go home soon. Our kids don't expect people to stick around.
  16. No One Knows the Child's Family - Staff. They mostly only know what the child tells them. They tend to believe the child if he tells them that you beat him daily, or “hug him too much” (Yes, my son told the staff that was one of the main reasons he was in RTC – we’d known him less than 6 months at that point… let’s just say that was NOT why he was there). Most RTCs are not used to working with kids with loving, involved parents. They’re also not used to working with kids with attachment issues. If the child says, "My dad beats me every day," "My mom doesn't feed me," "My parents won't let me have a cell phone because they are unreasonably strict,' "I'm a poor little abused orphan that no one cares about"... well, to the staff, it's entirely possible. The staff and other kids will validate your child's every entitled feeling, and will most likely try to "make it up to the child" by giving them things and special treatment. We also got a lot of pressure to give our child the same privileges a normal teen "deserves." Example of how we handled this.
  17. No One Knows the Child's Family - Peers. The kids in RTC and school will reinforce your child’s beliefs, and make the child feel better about him/herself (usually at your expense), based on whatever the child chooses to tell them. Ask my daughter how many of her “friends” (and biofamily) think we are evil, strict parents, and have offered to kidnap my daughter and let her live with them – most of them call us names (which she loves to share with us) and some of them have even offered to hurt us for her.
  18. RTCs Can Be Fun. Tiny successes are celebrated and rewarded. Even with almost no positive behavior they get to go on field trips, go to the playground, have dessert… get to go out to eat with parents (who are expected to be sensitive to their feelings), and can eat all the fried foods they want. ...things they get to resent you for for not doing all the time when they're home again.
  19. Chaos Feels Normal. Even children adopted at birth can be used to high levels of stress hormones from the womb. An environment of chaos, can feel normal and familiar. RTC’s feel normal. Nice, quiet homes feel abnormal and “boring.”
  20. It's Not Safe to Act Out. Tranquilizers, lock down, intimidating staff, big scary kids who fight back… RTC’s are scary places. It’s not safe to fight or draw attention to yourself.
  21. What's Normal for your child? Staff don’t know your child’s history or what is normal for him or her. They don’t recognize his/ her anxious behaviors or what Acting In looks like. We were told our daughter was “a little homesick,” but other than that was doing great. On the same day they gave her an anti-anxiety med PRN because she told a staff that she wanted to hit a girl for telling her to “shut up.” They don’t know this is totally out of character for our daughter.
  22. Compared to Whom? I always forget that staff’s definition of “normal” and “sweet” needs to be taken with a truckload of salt. Remember what they are comparing him too – NOT neurotypical children his age! My son is the best behaved kid in the school... a highly structured program for emotionally disturbed youths. They’re always trying to promote him back into regular public school, but that’s because they don’t even notice his “minor” behaviors, like crying, cussing, punching lockers, being rude and oppositional to staff but complying in the end… because they have kids that are listening to the voices in their head that tell them to kill, are spitting in people’s faces, constantly screaming and cussing in the middle of class at other students (because he broke up with her to date her twin – yes this was my son *sigh*), destroying property…
  23. Like Attracts Like. ALL the kids in RTC have poor social skills, so no one will notice that your child is not “good friend” material. So he can have lots of friends if he wants. Plus my kids are naturally attracted to other kids with issues (probably because kids with issues are more tolerant of the poor social skills or maybe because they crave chaos since that’s what they grew up with) so they have a large pool of choices… who can’t escape! It's all short term too, so they can even appear to be popular. Kleenex Girls.
  24. No Self-Entertainment Required. Self-entertainment is often difficult for kids with attachment issues to do - it usually requires imagination, which can be very difficult for concrete thinkers. In an RTC, there’s always something to do and people to entertain you. For example, if we try to stick to a schedule that says we have dinner at 6pm then we have to leave the child(ren) to their own devices for ½ an hour or so while we make the dinner. In an RTC there is staff with them entertaining them all the time, and then they get up and walk to the cafeteria where dinner is magically ready. The child rarely has to self-entertain in an RTC.
  25. Medications and Round The Clock Staff. RTCs can make dramatic med changes, whereas we as parents have to work with small incremental increases to a therapeutic level, and don’t have access to 24/7 nursing/ psychiatric care if our child has an adverse reaction. We have to deal with a raging or dysregulated child while the right medication cocktail is found. 





I have had so many doubts about whether what I was doing was right and how to change things as they got older and more securely attached:
Slowed/ stopped progress
Justifying structured, (emotional) age-appropriate parenting
FAIR Club with "adult" children

I still believe Therapeutic Parenting was the best thing I did for my children
Therapeutic Parenting
The FAIR Club 

Thursday, October 22, 2015

Getting Respite/ Planning a Trauma Mama Retreat!

There are a few organizations out there that hold trauma mama retreats, but travel can be expensive and it can be super scary to hang out with a bunch of people you've never met before. The biggest issue of all is that when you need the support the most is when it's the hardest to get away!

I can tell you right now, that retreats are worth it! If you can possible find a way to make it happen, DO IT!

Caring For the Caregiver - I try to remember that, "If Mama ain't happy, ain't nobody happy!" I do everything I can to refill my "bucket." Even knowing that your child (who might feel abandoned) is going to “punish” you later, remember that it’s worth it.Your child may not be able to handle you leaving, but your whole family benefits from you getting this needed recharge. You can't help anyone if you have an empty tank.

Please do whatever you can to take care of yourself and your needs. It must be a priority.

Retreats can be big and super organized, or just 3 or 4 mamas hanging out.
  • ACT Seminar 2009 and 2010 - road trip! Nothing like hanging out with trauma mamas for hours on the road and experiencing a powerful seminar. 
  • Texas Trauma Mama Retreat 2012 - about 10 women, hanging out in a beach house.
  • BeTA Retreat 2014 - over 100 women from all over the world staying in a string of villas in Florida. There were lots of (optional!) things to do: trainings/presentations, a catered meal with a comedienne for entertainment, trips to the local tattoo parlor, masseuses and mani/pedis, "block parties" with donated goodies... even a fun run). Each villa had a pool and hot tub and you could hang out with just the people in your villa or visit other villas. 
  • Unshaken Moms Retreat 2015 - about 20 women staying in a gorgeous bed and breakfast in the middle of nowhere.
  • Trauma Mama mini retreats - a few trauma mamas hanging out in a hotel for one night. Sometimes a trauma mama will be visiting a city near me for an event and we'll gather together for a night and just hang out. We might sightsee, paint the town red, or just hang out and talk all night. 
  • Trauma Mama Playdates - 2-4 trauma mamas getting together to talk. We might go to lunch or dinner or just hang out at the park or someone's house. Kids are optional - whatever works.
 One thing I love about retreats is that not only do you get to hang out with people who "get it," but you get to keep them! That intense bonding, means I now have best friends all over the world. Whenever one of us is traveling, we can usually find a trauma mama nearby.

Want to go to a retreat, but can't find one near you? Organize one yourself (or talk your friends in to helping you!)!!  

Retreats don't have to be expensive, but be sure you don't over commit yourself. Do get deposits from everyone who is attending. You don't want to end up stuck with a bill for a big house with empty beds. Personally I don't care where I sleep or what we do, for me it's about who I'm with. I'd be perfectly happy sleeping on an upholstered chair in a cheap motel, drinking boxed wine and eating PB&Js, as long as I had a chance to connect with my fellow trauma mamas.

Henna Tattoo
Don't be afraid to ask for donations - it's a good cause! I recently went to a weekend retreat at a gorgeous B&B with amazing food, all for only $50! The location was donated by the sister of trauma mama (the place wasn't booked for that weekend, and she felt the trauma mamas were a good cause). Food can be potluck, brought in by local trauma mamas, donated by local shops, or shopped for in bulk. Main thing to remember is to have LOTS of CHOCOLATE! Many people and places will donate goods or services. One of the retreats I go to has a woman who spends the whole weekend doing henna tattoos on everyone.
Yes, I dressed like Wonder Woman the whole time. Got a problem with that?





Hope Rising was a great organization that connected Trauma Mamas to each other primarily through FaceBook. They organized retreats at central locations all across the country. Unfortunately they are no longer operating as an organization, but they have left behind a great document for organizing your own retreat.

Planning an Effective Retreat



But what if you just can't go anywhere! You're at the end of your rope and you're completely drained. 

You have got to find some respite somewhere, in some way. 

Some thoughts:

Are your kids old enough to be left alone for a little while? Even if you know they will get in to trouble, as long as there's little chance of permanent damage, maybe you should just get away for awhile - even a couple of hours doing something just for yourself.

What about a staycation? Prepare a couple of meals in advance (or just make sure you have cereal or sandwich fixin's for the kids), tell the kids you are on strike and they are on their own, then lock yourself in your room - well-stocked with your favorite beverages and snacks, Read a book, do some crafts, take a bubble bath, watch a non-Disney movie, have a friend or two over for a sleepover or "girls night in"... 

Are they adopted from foster care? If yes, there might be some respite funding in post-adopt services. 

Will your kids behave for other people? 
  • Co-op (you watch my kids one time and I'll watch them the next).
  • Babysitting by a fellow trauma mama or trained respite worker.
  • Babysitting by a teenager who is experienced with kids with special needs (maybe a sibling of kids of trauma)
  • Contact local foster/adopt agencies and see if they have parents trained in therapeutic parenting that will provide respite
  • Care.com may have caregivers experienced in working with special needs, sometimes former foster parents, people who've worked in residential treatment centers, or special education teachers
  • Friends and family willing to learn how to provide care to "our kids"
  • Playdates/ sleepovers with classmates, the children of family friends...
Do you live close enough to somewhere that has support groups? A chance to meet other trauma mamas and build a support network.  Some support groups offer childcare.

Even if you don't regularly go to church, there might be a church in your area that can help. Usually there are classes for the kids separate from the parents, some of the larger churches even have special needs classes where people who "get it" take care of your kids, if just for an hour. Our church has an "angel" program, where an adult or teen follows around a special needs child one on one. 

Volunteer work. When our kids were too old for summer camp and after school care. We found programs that offered highly structured volunteer programs. We found several equine therapy places that had volunteer programs. 

Extra-curricular programs (gymnastics, equine therapy, sports...) or therapy (like equine therapy). Even if you can't go far, you can do something just for you. I've sat in my car and read magazines.

Daycare/ Mother's day out programs/ after-school care - even if you're a stay at home mom.

TV I've been known to rent or even purchase a bunch of kid movies or a marathon on TV of a favorite show or movie series that I know my kids want to watch and plop them down in front of it with pizza and/or snacks. 

Saturday, October 10, 2015

Anxiety Scale


Kitty has severe issues with insight, emotional regulation, coping with negative emotions, recognition and appropriate expression of feelings, judgment, impulse control… She usually operates at close to max capacity for stress and anxiety. When she is under even slightly more stress and anxiety than usual, remaining stable and able to have emotional regulation in public becomes much more difficult for her.  She usually tends to shut down in public and has almost no emotional reserves left when she gets home.  For an example of the effects of this, see The Spoon Theory. We have modified, structured and regulated much of her life to reduce her stress level, giving her as much emotional flexibility as possible to handle her life outside the home.

In her freshman and sophomore year of high school, Kitty was in and out of psych hospitals for suicidal ideation and we were attempting to get her in to residential treatment, but were having funding issues. She was struggling so much that she usually couldn't make it through a whole day of school. She often would attend one class and call me to pick her up (usually going straight to the psych hospital), but the school insisted this was a "home problem," because she "wasn't showing any signs" of issues at school.

We had a lot of issues with the school not wanting to see her "acting in" behaviors. It took us quite awhile to force the school to come up with a crisis plan, because Kitty didn't tend to act out or disrupt class when she was dysregulated. She'd literally "rather die" than let people at school see that she had "issues." 

I have to believe that some of the school's actively ignoring what was going on with Kitty was also to avoid liability/ responsibility. If the school acknowledged that Kitty's disability was effecting her education, they would be forced to make accommodations, like paying for residential treatment or moving her to a more structured environment like the secret special school for emotionally disturbed students that had only 3 students to each staff member and all the staff were trained in handling kids with behavior and emotional issues - hence way more expensive than regular school! 

Kitty has learned strategies to reduce stress  (Calming techniques - e.g., exercise, deep breathing, neurofeedback techniques…), but she is unable to access these techniques when under stress or feeling strong emotion. So she needs assistance from someone trained in these techniques. We needed to know when she needed that assistance (and when she needed more than that). 

The school claimed that liability issues meant they could not ask Kitty if she felt suicidal. After much work, they admitted they were willing to ask if she felt anxious. We had "being able to express her feelings to school staff" formally put in to her IEP. 

Behavioral IEP Goals:
  • Using a scale, Kitty will verbalize or express her feelings to a trusted adult in the school setting a minimum of 1 time a day
  • When Kitty is expressing anxious feelings or exhibiting "acting in" behaviors, she will request the assistance of a trusted adult 5 of 5 times

The problem was that they wanted Kitty to tell them how she was feeling on a scale of 1 to 10, and Kitty doesn't have a strong grasp of this concept. 

Rating scales need to be more concretely defined for Kitty. Kitty needs to understand exactly what the scores on the rating scales mean. When asked, “on a scale of one to ten, how suicidal do you feel?” she told the crisis assessment counselor she was a 6. When asked to elaborate, she said she felt suicidal, had a plan, but unlike a "10" she didn’t have the means (no rope or belt in her hand). To me, this would be more like an 8 or 9! Obviously the crisis counselor agreed, because she sent Kitty to the hospital.

I came up with an Anxiety Scale for Kitty to use. {Unfortunately the school decided this was too complicated and had her put a card on her desk that was green on one side and red on the other. Kitty was to flip the card to red when she was anxious. This was too simple, and meant that Kitty couldn't get help with calming techniques while she was still regulated enough to use them.}

ANXIETY SCALE
0 – Cool as a cucumber.  INTERVENTION:  No intervention  needed
EX:  On the third day of a long vacation, soaking alone at a spa.





1 – Everyday minor stress needed to function.  Occasional twinges of minor discomfort.  
INTERVENTION:  No intervention  needed
EX:  Alarm clock goes off.  First bell rings.





2 - Minor bother.   
INTERVENTION:  Self-initiated calming skills.  No outside intervention needed.
EX:  Need to move quickly to get to class.  Momentarily can’t find homework.  See a cute boy.







3 – Anxiety annoying enough to be distracting. 
INTERVENTION:  Coping/calming skills still work, but might need outside reminders  to use them.
EX:  Loud, chaotic environment.  Quiz you’re prepared for.  Ex-boyfriend standing 15ft away.






4 - Can be ignored if you are really involved; still distracting.  Somatic symptoms (upset stomach, headache...).  
INTERVENTION:  Brief breaks with adult support and assistance using coping/calming skills.  Can be redirected back to class.
EX:  People arguing.  Test is prepared for.  Presenting a well-prepared presentation with a group.






5 - Can't be ignored for more than 30 minutes.  Thoughts of hurting self intruding, but controllable.  
INTERVENTION:  Brief breaks with adult emotional support.  Might be able to access coping skills with assistance.  Can probably be redirected back to class or work independently in less stressful environment.
EX:  Giving a speech to a group.  Getting feedback or gentle teasing.  Feeling behind in schoolwork






6 - Can't be ignored but still can work.  Wants others to keep her safe from acting on feelings of self-harm.
INTERVENTION:  Leave stressful environment and continue work.  Learning Lab?  Talk with behavior specialist.  Coping skills might work after calm down a little.
EX:  Picked on/teased by peers.  Test in class struggling in.





7 - Hard to concentrate, bothers sleep.  Can still function.   Feel need to escape.  Suicidal thoughts.  Needs stressors limited by others or will escalate.
INTERVENTION:  Leave stressful environment and not able to access cognitive part of brain for school work.  Can’t access coping skills.
EX:  Feels personally attacked by someone close to her.  Overwhelmed because behind in classes. 


8 - Activity limited a lot. Can read non-school books and talk with effort.  Suicidal thoughts with plan, but not seeking out means.  Paranoid others hate her and are out to get her.  Acting out behaviors if can’t escape/ act in.
INTERVENTION:  Reduce stressors as much as possible.  Consider hospitalization, but can wait for open bed.





9 - Unable to function. Crying out or moaning.   Acting out.  Fight/ Flight or Freeze Reactions.  Suicidal thoughts with plan and means, threatening, but not actively attempting to commit suicide.
 
INTERVENTION:  Immediate removal from all stressors.  Hospitalization.


10 – Totally Stressed Out. Eyeballs explode.