Self Care

I decided I need my home to be clean(er) for the holidays, but the thought is totally overwhelming, so I have this new 31 day house cleaning routine that I'm going to try.

31 Day House Cleaning Routine 

I'm going to have to modify it for my home (which is bigger than the one described), but it breaks the job in to chunks I can handle. I've also decided to treat the children as "bonus" helpers so I don't get so frustrated with them when they don't help.

It may not sound like self care, but I think it will make me feel better and more accomplished.  Plus, Bob has been saying she wants to bring friends home from college, but is too embarrassed.

Wish me luck!

Books and Methods Review - Traumatic Brain Injury - Brain Damage

Traumatic brain Injury linked to ptsd and suicide. http://www.navytimes.com/news/2013/02/gannett-mild-tbis-linked-troop-ptsd-suicide-020613/

Bear - left parietal and left temporal
Kitty - left temporal

Both my children have brain injuries (called Cerebral Dysrhythmia - the cause and time of injury is unknown - could be birth defects, could be from abuse).  The temporal lobe is definitely damaged in both, Bear also has damage in the parietal lobe.  I always thought it explained a lot, and I bet more than a few of "our kids" have these issues.  I always include the brain injuries when mentioning their issues to people who need to know, because I think it helps people understand that this is PERMANENT not something that therapy or medication is going to "fix."

Damage to the parietal lobe can also lead to Anosognosia - "impaired awareness of illness." Affects approximately 50 percent of individuals with schizophrenia and 40 percent of individuals with bipolar disorder.may not recognize that they are ill. Instead, they believe their delusions are real (e.g., the woman across the street is being paid by the CIA to spy on him) and that their hallucinations are real (e.g., the voices are instructions being sent by the President). Impaired awareness of illness is the same thing as lack of insight. The term used by neurologists is “anosognosia,” which comes from the Greek word for disease (nosos) and knowledge (gnosis). It literally means "to not know a disease." This is more than just denial!

We are often told that brain damage can be "fixed," and I believe that to a certain extent that is true, but at some point we have to acknowledge that some of it isn't going to get better or we'll be blaming ourselves (or allowing others to blame us) for our child not healing.

Some analogies:

The Newborn Kitten - Kittens eyes stay closed for awhile after they are born.  Scientists did a study in which they didn't allow kittens eyes to open when they normally would. When they finally allowed the kittens' normal, healthy eyes to open, the kittens were completely blind. The part of the brain that processed vision did not form. The kittens will never be able to see.

Amputated Limb - If a human being has a limb removed and replaced with a prosthetic limb, then the brain can be trained to use the remaining muscles in a different way that allows movement of the new limb.

So the question is, if a person has brain damage or an injury, can they "heal"?  Can they retrain their brain to work in a new way that circumvents the damage (like teaching a person with dyslexia "tricks" to make it easier to read) or is it permanent?

I assume the answer is that it depends.  On the age of the person, on the cause and extent of the damage, on when and what quality of intervention/ therapy was used, and on the motivation of the "injured" person to heal...

There is evidence that in addition to brain damage and the way the brain forms in utero, a lot of what happens to a child as an infant can also cause brain damage.  I've written a couple of posts reviewing Piaget's child development and Katharine Leslie's take on Cause and Effect and Object Permanence and how it effects children of trauma, but here's a couple of key points:

Cause and Effect - Children with attachment disorders and FASD (Fetal Alcohol Spectrum Disorders) often have problems with cause and effect. This may start with the caregiver not meeting the child's physical needs (ex. not changing them when they're wet or feeding when they're hungry). The child doesn't learn that if I cry then someone will come make it better. Instead they might learn that if I cry then someone will hit me, or if I cry then no one will come anyway... this makes behavior management difficult - both self-regulation and parent discipline. If I steal a cell phone, then I will get in trouble. If I yell at my sister now, then she will be scared of me - even 5 minutes (or 5 years) from now.

Object Permanence - We all know that young infants have no ability to understand object permanence. For example, if you hide a rattle under a blanket they don't look for it, it's gone. For them, out of sight out of mind is really true. At about 8-9 months though they "get it." They start to look under the blanket. We often help them develop this ability by playing peekaboo with them. "Wheeere's Mommy? Here I am!"

Now imagine the child who's infancy is not the norm. Who never "gets" this concept. So what? Maybe they never put their toys away because if you can't see them they don't exist. Might not even be so bad because when they are put into foster care they "forget" about all the things left behind... but it's not just things the child doesn't remember. It's people.

You can't attach to someone who isn't there the second they step out of sight. Mommy doesn't exist anymore.

There's a weird movie with Adam Sandler and Drew Barrymore called 50 First Dates. Because of a car accident that damaged her short term memory Drew's character is unable to remember anything that's happened in her life the day before. Adam meets her and courts her anew every single day. They introduce a character called "10 Second Tom." He can only rememember things for 10 seconds. Drew is able to fall in love with Adam because she has the ability to create attachments. Tom would be unable to attach to anyone.


Even though I'm here and not going anywhere, my kids' ability to attach is severely damaged, and for Bear, maybe permanently. Katharine assures us that even a child/person older than 8 who's brain is pretty much hardwired now, can learn these skills and abilities (or approximations of them), but just like learning a foreign language, the older you are the less perfectly you'll be able to learn it and the the more effort it takes (think of people who learn to speak English as a second language as a child versus as an adult).

75 Positive Child Behaviors and Attitudes - Katherine Leslie

75 Positive Child Behaviors and Attitudes 

from Katherine Leslie's Coming to Grips with Attachment

The survey contains a list of positive child behaviors and attitudes. Please put a check mark under the column that best describes whether each of these behaviors or attitudes is generally true (GT) or generally not true (GNT) of your child.  Please fill out a different survey tool for each of your children.

GT/GNT

1 Cares about self

2 Cares about others

3 Takes care of the pets

4 Good work ethic

5 Is kind and giving

6 Has a positive outlook

7 Enjoys learning

8 Loves spending time with family

9 Adds to family unity and peacefulness

10 Wants to do what is right

11 Friends and relationships are important to him/her

12 Is polite and respectful

13 Is conscientious and accepting of others

14 Is remorseful when he/she makes mistakes

15 Stands up for her/ himself

16 Is grateful and appreciative

17 Asks me to play with him/ her

18 Asks for compliments

19 Wants me to share in his/ her successes

20 Tells me things he/ she's learned or seen

21 Appreciates my efforts

22 Responds respectfully to my discipline

23 Does things/ chores to help me

24 Wants to please me

25 Hates to disappoint me

26 Demonstrates behaviors we've talked about

27 Looks to me for approval

28 Listens to me when I give directions

29 Shares ideas and feelings with me

30 Asks for help and advice from me

31 We talk together about life

32 Looks up to me

33 Talks to me about his/ her problems

34 Is interested in hearing my life stories

35 Enjoys my hugs and kisses

36 Tells me his/ her fears

37 Is natural and authentic

38 Cares about what I think

39 Knows I will be there for him/ her

40 Wants to be cared for by me when he/ she is sick

41 Comes to me for comfort after being scolded

42 Falls asleep in my arms

43 Feels sad when I leave or if I'm not around

44 Is excited/ happy to see me after a separation 

45 wants to be near me

46 Seeks me out for comfort I he/ she is hurt or feeling bad

47 Lets me teach him/ her things

48 Looks for me if I'm watching his/ her sporting events/ activities

49 Wants a hug and a kiss from me at bedtime

50 Wants to spend time with me

51 Gives me support and encouragement

52 Compliments me

53 Wants to be like me

54 Pays attention to me

55 Seems to like me

56 Shows concern when I am upset

57 Talks positively about me to others

58 Makes things for me

59 Gives me gifts

60 Tells me I am the most important person in his/ her life

61 Tells me I'm great

62 We play, tease, and joke around

63 We enjoy doing activities together

64 We cuddle and giggle together

65 We rough house together

66 We share the same sense of humor

67 He/ she is funny and makes me laugh

68 Gives me hugs and kisses every day

69 Isn't afraid to show me affection in front of others

70 Tells me he/ she loves me

71 Responds to my affection with warmth and happiness

72 Smiles at me many times a day

73 Writes me cards to tell me he/ she loves me

74 Hugs and kisses me out of the blue

75 Looks to me for protection

I loaned out my Coming to Grips with Attachment book years ago and it never came back, so when someone mentioned this checklist, I was curious how my kids rate now. It was really depressing until I decided to look at it for ALL my children and realized that some of it is probably the fact that my kids are teens. 

Kitty 15-20 if I'm feeling generous. 

Nope, still depressing.  *sigh*

Caring for the Caregiver Ideas

We HAVE to "fill our buckets." It's not selfish (no matter how many people tell you otherwise!). It doesn't mean we don't love our kids or are "bad parents." If we give and give until we're completely drained, then there's nothing left! You have to find little ways (or a few big ones) to carve out something that's just for you.

When people said stuff about Caring for the Caregiver to me early on in this journey, I just looked at them like they were crazy. Who has time for that?! I needed to believe that if I said, did, taught... just the right thing(s) that my child would heal, and I knew that if I didn't... then it would be my fault that my child was broken.

So put your foot down and DEMAND that you get time for yourself. Fight for it. Carve it out. Put a priority on it.

What fills your bucket is unique to you.  For me, it helped knowing my love language.  Since my primary love language is Words of Affirmation then I tend to lean toward finding ways to fill that need.

• DO SOMETHING THAT'S JUST FOR YOU!
• Splurge a little on a treat just for you. Remind yourself that if Mama ain't happy, ain't nobody happy!
• Buy your favorite kind of chocolate (or other treat) and hide them for when you need them.  (Tell someone or write down where you put them!  Nothing worse than not being able to find your special treat when you absolutely need it right now!
• Pay someone for a mani/pedi or have your own little homemade spa. Can be a fun thing to do with a regulated child.
• Keep a little jar with reminders of the times you've done something right.  It can be a quote from someone else, a thank you card, a note you wrote yourself about a recent achievement.  It can simply say, "I'm good enough. I'm smart enough. And doggone it, people like me."  (I have a Positive Affirmations folder in my e-mail for when I get a positive comment on my blog, or my boss tells me I'm doing a great job, or my kid has a special achievement that I know I had a hand in -even if that "hand" is raising an amazing kid....  Sometimes if I'm feeling down, attacked, or judged, I open that folder and remind myself that I am a good person and I'm not the only one who thinks so.)
• After everyone is in bed, I love a bubble bath, a good book that has nothing to do with trauma or adoption or anything (my fav is the funny,romance novels by Katie MacAlister), and maybe some candles and/ or a glass of wine.
• Turn on Spongebob. Let the kids zone out in front of the TV while you take a break.
• Have your kids come up with a list of things to do when they're bored (check out this example) and then encourage them to do one or more of the activities while you take a break.
• Tell them that room time is at 7pm, whether they're tired or not (and change the clocks if need be). 
• Buy a cheap alarm for their bedroom door so you don't have to worry about where they are. 
• Sing along to the radio!  It's amazing how much better you feel after singing. 
• Find something to laugh about - watch a silly video http://www.parentsociety.com/daily-quickie/videos/forget-all-about-that-bass-these-moms-do-a-hilarious-parody-called-i-just-cant-clean-this-place/, read something funny 
• Call the friend that is always saying, "let me know if I can help," and say, "YES! Please come by my house at 7pm and watch my kids for 2 hours." 
• Call a fellow trauma mama who "gets it."
•  Join the annual trauma mama Christmas Gift Exchange. 
• EXERCISE - Turn on an exercise video and work out - if the kids want to do it too, great! If not, then they can sit on the couch and watch. I love Richard Simmons for the low impact work out and easy to learn routines. Try Christine Moer's (Welcome To My Brain) hoop challenge (30 minutes for 30 days)
• Start a snowball fight in the backyard (or if you're in Texas like me, a water fight or run through the sprinklers!). 
• Find a regulated kid and cuddle (borrow a neighbor child if you have to!). 
• Read Healing from Hazardous Parenting by Brenda McCreight PhD.
• FIND A SUPPORT GROUP of people who "get it." If you don't have anyone local, try online. You can find anything on the internet these days!
• Start a co-op with other trauma mamas. 
• GET ENOUGH SLEEP. Take a nap whenever you can. Go back to sleep after the kids leave for school.
• EAT WELL. 
• Make something special just for you, and let them eat cheap boxed pizza on paper plates.
• Give the kids the "burned" pieces. Don't always take the bad stuff for yourself.  I always have my own bowl next to me when I cut watermelon and the best pieces go in MY bowl.
• LAUGH! Find whatever makes you lol and check it out daily.  Whether that's  People of Walmart, an iFunny app or Spongebob.  One of my personal faves is 99 Ways to Drive Your Child Sane by Brita St. Clair - This short little book is full of wild ideas and hysterical humor to bring the laughter back into a home with an emotionally disturbed child.  It includes lots of "one liners" and silly, fun ways to help parents avoid anger around tough topics. Written by a very experienced and loving Therapeutic Mom with years of success helping tough kids heal.

Almost every Monday for the last 2 years, I have met a friend at IKEA for breakfast.  We met casually in a fabric store one day and started chatting. She is not a Trauma Mama, and we have very little in common. She's about 15 yrs older than I am. Has grandchildren the same age as my kids.  She's an artist (makes beautiful art dolls). Grew up in Germany.  Living green is very important to her... She lives about 1/2 an hour away from me, and we almost never meet or talk at any time except for these couple of hours once a week. We vent, talk about our kids and husbands, and shopping, and religion and family...  I consider her one of my best friends. Sometimes you just need a person to go to, who is not part of your everyday life, but never judges you.  Who is always glad to see you and always willing to listen.

Parenting Biokids and Adopted Kids Together

FYI, this picture is for illustration only. These are the 192nd Fighter Wing kids. Not an adoptive family.

See also this post, Biokids with Adopted Siblings

Adopting Out of Birth Order

My adopted children were older than my biokids, and that caused some extra issues because the biokids were able to handle tons of things the adopted kids couldn't.  Here's a good post I did for a lady adopting a RAD child older than her bios (different age, but kids of trauma are often younger developmentally, emotionally, and/ or socially).

Adopting Children Developmentally, Emotionally, and/ or Socially Younger
This could also apply to parents with kids who are not technically out of birth order, but are close in age or younger (for example giving birth to biokids or adopting a child(ren) younger than the older adopted child(ren) but with fewer issues). The problems come when this younger child(ren) pass up the adopted child(ren) developmentally, emotionally, and/ or socially. Parenting often appears to not be fair, like you're choosing favorites, and/ or that you're criticizing or punishing the delayed child.

{My adopted children were both delayed and older than my oldest biochild (Bob, biodaughter). Bear (adopted, 3 1/2 years older than Bob) was very aggressive and intimidating to everyone and Kitty (adopted, 1 year older than Bob) was aggressive toward Bob (jealousy, pushing to get kicked out like everyone else has done to her in the past, delayed emotionally and socially - so tended to be more like a toddler who uses her hands not her words...).}  

All Children are Not Created Equally - Nor Should They Be Treated That Way
For a long time, we tried to treat the children equally, especially the girls who were close in age and in the same grade at school, but we finally figured out that was not going to work. Life got smoother when we started using age-appropriate, therapeutic parenting.
Post:  Chap. 1 Parenting based on Developmental/Emotional Age


Here are some of the things we did (or I wish we had done sooner!):

1. SELF-CARE!! Self-care!! Self-Care!!! 
This is a tough life and if you're "bucket" is empty, then you're no good to anyone.


2. Prioritizing Yourself, Your Family, and Your Child - In That Order! 
Not only do we tend to put ourselves last, but we also tend to listen to the "experts" and focus on the needs of one child (or two). First priority needs to be yourself, then your significant other (after all, hopefully, he/she will be around long after the children are out of the nest) {How We Keep Our Marriage Strong}, and then the family as a whole. The needs of the "squeakiest wheel" need to be last! 

Believe me, I regret how little priority my other kids got and we're seeing some of the negative effects now that they are grown. Especially when I realized that my son, Bear, (the squeakiest wheel) was not able to heal {You Have Not Failed} but even with my daughter, Kitty, who was able to heal and might not have if I hadn't poured so much energy and time into her. Sacrificing the family as a whole for one child was a mistake that I deeply regret. 


3. Finding the Joy - 

Once I finally had enough emotional reserves to be able to function, then I had to figure out boundaries, priorities, support... the things I needed to be able to keep going and keep my "tank" full enough to be there for my family.

4. Explain Why They're Treated Differently - 
We sat the adopted children down and tell them that they were being treated differently because of their trauma, not because we loved them less or loved biokids more. They absolutely did not understand this or believe it, but it needed to be said if only so we could refer back to the conversations.
Posts: Trust Jars/ Love Jars post;
Choosing Joy - Explaining Age Appropriate Therapeutic Parenting to Child(ren)

          The younger biochildren did not have the same childhood and there were going to be areas where they got to do things the adopted kids didn't, even though they were older.   None of this solved anything by the way, but it gave us a reference point that we could keep pointing back to,

"I know it doesn't feel fair that your sister gets to spend the night at your friend's house and you don't, but you're not at a place to do that right now, because it's hard for you.  Your sister didn't have the trauma that you did so she can handle it.  

You'll get there!  Just not today."

5. Stop treating them equally.  
They are not equal! They have different life experiences, different interests, different abilities, different needs...  My mom always emphasized that with my sister and I.  We both got a Christmas present, but it wasn't matching dresses (which is one thing my dad liked to do)!  Neither of us would want what the other wanted! Our gifts were chosen with our unique likes and dislikes in mind.

^^This is actually how the FAIR Club got started.^^ 
My kids were constantly whining, "That's not FAAAIIIRRR!!!" I needed a way to discipline and structure each child's life that was appropriate for them.  Structure for the adopted kids, but not really punishing them for things that were out of their control (fight/ flight/ freeze reactions for example) - while avoiding letting the biokids feel that the adopted kids were "getting away with" behaviors that we didn't want the biokids to start thinking was OK for them to do!

6. Emotional Age - 
Remember that developmentally (emotionally and socially) most kids of trauma are a LOT younger.   If we expect them to "act their age," we're all going to be disappointed.
Therapeutic Parenting Based on Emotional/ Developmental Age
Developmental Stages

7. ABSOLUTELY no touching of other kids!  
None.  Ever. My violent child especially, literally had to be out of arms reach of the other kids at all times.  If I had to be in another room then that child came with me or was in his/her room alone. They weren't allowed to sit next to each other on the couch or in the car.  They were NEVER allowed to be alone in the same room.


8. Separate rooms. 
Originally the girls shared a room.  BIG mistake! They giggled all night keeping each other up. Our adopted daughter stole things from her sister. One child was a "neat freak" the other was not. The smells and dysregulation of our adopted daughter, plus disagreements between the two girls created a resentful/ hostile environment that often made things worse.

We converted the playroom to a bedroom to separate them.  For example, when I was a kid, my bedroom was the breakfast nook with some slatted closet doors bolted in to make a wall (this was because I moved in with my dad unexpectedly, not for any trauma/ safety issues).

8a. Children were not allowed in other family members' bedrooms. Ever (although exceptions were made if a parent was present). This was to prevent thefts and potential abuse.

8b. Cameras, alarms, and locks. We never installed cameras but I often wonder if we should have. There were alarms on the exterior doors and windows that helped let us know if a child was going outside without permission but I sometimes wish we had put one on the interior door of our son's bedroom so we would know when he was wandering at night. We did end up locking the pantry to prevent issues with stealing food but I realize we were very lucky that our son was not interested in physically or sexually abusing his siblings (just stealing from them).  

9. ABSOLUTELY no parenting.  
The adopted kids felt they had a right to boss the other kids around. The biokids just handled it.  Kitty expected it and was terrified of Bear so she often tried to anticipate his wishes.

EVERY time we heard it, we reminded everyone that WE are the parents and that was not their job.  We NEVER put the kids in a position where they got to tell the other kids what to do.  Not even relaying a message, like, "Mom said to come downstairs and do the dishes." At most, they were allowed to say, "Mom is calling you."

10. Individual parent time.  
Just me (or Hubby)  and the child doing something together.  Could be making a meal, going shopping, a "date," sitting next to their bed and chatting, telling a story or singing... I tried to make it fun, even when they were being obnoxious, awful, or in trouble.  It was an attachment activity and necessary. I did this with all the kids- adopted and bio. Try to squeeze in a combo of activities -  If you're at the school for an IEP meeting, have lunch with a biokid. 

Figuring out your child's Love Language can really pinpoint what will make your child feel the most special and loved. 

11. Family and individual activities. 
Don't skip that family vacation because one child can't handle it. Find an alternative for the child having issues (preferably something fun for them), and GO! Make time for each child's school events and activities. Go to your biokids' art show, soccer game, whatever. Sign them up for dance classes that their adopted sibling isn't a part of (this is when it really comes in handy to have a spouse so you can divide and conquer!).

Try to find ways that all the kids can participate without overshadowing the other's fun. While watching your son play T-ball, let the other kids play on a nearby playscape or spread a blanket behind the bleachers and play with toys they don't always get to play with. Have a Letter Party and each child gets to do something different to help (pick the letter, shopping, helping cook, pick the movie, set up the picnic area...).

12. Individual time - 
Give the kids a break from their siblings and family life sometimes. There were summers where Bob went to live with her grandparents. She remembers them as some of the best summers ever. 

13. Squeaky wheels - 
Be very aware that our natural inclination is to take care of the squeaky wheel first. The problem is that biokids tend to be less squeaky (well, except during puberty when all of my kids went insane). I still feel guilty that my adopted kids were so squeaky that my biokids were often ignored. Prioritizing Yourself, Your Family, and Your Child - In That Order**

14. Provide structure and reduce overwhelm.  
Our adopted kids needed LOTS of Structure and Caring Support.  Their insides are so chaotic that we had to make the rest of life as calm and as simple as possible. That means stripping their rooms of all but a bed and one toy.  It means for them, chores that biokids could handle with ease, have to be simplified and fewer.  Multi-step directions were overwhelming and impossible.  They usually triggered Dysregulation and Meltdowns.

15. Make it OK for biokids to complain and vent. 
Living with mentally ill siblings is HARD. It is for parents too of course, but there are rarely support groups and people teaching Self-Care for kids. As long as it wasn't in front of their siblings, and they didn't share it with friends who knew their siblings, then I made sure that they knew it was even OK to resent/hate their sibling.
{I probably let the venting/ complaining go too far and let the biokids feel that it was OK to be totally negative about their siblings all the time without encouraging them as much as I should have to look for the good stuff too. Please be aware of that yourself and don't do what I did!}

15a. Preventing abuse. We also had frequent conversations with all our kids individually about personal safety and who was allowed to touch their "private parts" (parents and doctors and only if necessary). We made it very clear that they needed to come to us if they felt threatened or hurt in any way. We also watched carefully for "grooming" behaviors (abusers will often "woo" potential victims to build trust before actually abusing them).

16. Avoid over-sharing. 
I'll admit that as Bob got older, it was easy to confide in her and sometimes vent or bounce off ideas. She knew the people involved and the situations, much better than any other friends and family members outside of our immediate family. She often had great insight, and I knew she wouldn't judge me for being upset/ angry with the adopted child or the situation. I often worry that I laid too much on her shoulders because she seemed like she could handle it. I forgot that she's still a kid and going to have to have and/ or establish some kind of relationship with this sibling for the rest of their lives.

17. Down the Road? 
As our biokids get older, they might have to take over the care of their sister, Kitty (and possibly even their brother, Bear), when Hubby and I can no longer do it. I'm not sure how I feel about asking that of them, but I don't foresee any alternatives.

Reluctant Keepers of a Brother With Autism:We have always believed that Nick and Grace should take responsibility for their brother when we no longer can. We have worked to engrave that duty on their hearts, but they accept it grudgingly. I wonder if we failed as parents to instill compassion in the twins, if we somehow hardened their hearts instead of softening them. [My husband] reminds me that few people accept familial duty with joy.  

Nick and Grace, meanwhile, at 23 are now busy young adults with romantic relationships and promising careers. They rarely ask after their brother, but when we all get together for holidays, they treat Jeffrey with detached kindness rather than the resentment of the past.  We sometimes remind the twins of their duty to care for Jeffrey, and with the optimism and confidence of youth, they say they will handle it, and anyway, it is far in the future. But I know that the future has a tendency to arrive sooner than expected, and that it will not be easy.

Are we asking too much of the twins? What is the responsibility of a sibling for a sibling?  When we are both gone, the burden will be passed down, along with the silverware and the photo albums, and Nick and Grace will be forced to take up where we left off. And we can only hope that we have done right by all of our children.

The Spoon Theory

The Spoon Theory - was written by a woman suffering from Lupus to explain to her friend why she looked "fine," but wasn't. {The Spoon Theory written by Christine Miserandino}

The Spoon Theory states that a person with an invisible illness gets only a set amount of energy/ strength/ ability to handle things. Each spoon represents a stressor, and when too many are lost. . . the person gets overwhelmed and runs, dissociates, shuts down, acts out, hurts themselves or others . . .

We all respond to stress and anxiety differently.  Maybe with a Fight, Flight, Freeze, or Fawn response – Acting Out or Acting In. Our responses are greatly influenced by our perception of our environment
         Ex.  A child may show both "acting out" and "acting in" behaviors at home and places he/she feels safe but tends to only "act in" at school and in the community.

Many people are great at hiding/masking their stress and issues – this doesn’t mean they don’t need help.

Kitty would literally rather die than let others see her issues.    

When you have an invisible disability, although you may look “fine,” the smallest activity can be stressful and draining. Stressful events can have a cumulative waterfall effect, and how you react is based on many circumstances that others may know nothing about.

Examples of a typical day's stressors that could cause the loss of a spoon:

• Didn’t sleep well (because you were upset, didn’t take your meds until late, have circadian rhythm disorder, nightmares/ PTSD flashbacks, for no apparent reason...)
• Slept through your alarm – all 3 of them.  Your heart is pounding from Dad’s knock on your door.
• Digging through the basket for clothes that don’t smell too bad because you didn’t do your laundry.  Will anyone notice?  
• You’re late, so no time for breakfast – your meds don’t work well on an empty stomach
• Can’t find your shoes… gotta find those shoes!  Ran out of time. Now you have no time to grab your jacket. Brr!
• Bus ride.  The driver frowns at you for not being ready. GUILT!
• Try de-stressing by listening to your iPod and tuning out the noisy kids.
• The teacher is not in her classroom; where to go?  There's a scary kid in the behavior room.  SCARED! Hang out with friends in the hall, but feel guilty because you know you're not supposed to. GUILT! 
• An annoying kid wants you to say that you’re her best friend.
• TOO MUCH WALKING!  Don’t complain or people will think badly of you.
• You're so quiet that the bus driver forgets you’re there and starts to leave.  GUILT! FEAR!
• You have to go to the cafeteria.  You're hungry, but it's so loud! Everybody is staring at you!  You're going to do something stupid!  It's too much, so you sit out in the hallway. HUNGRY!
• Fast food, pudding, soda - Mom says you shouldn’t eat this stuff.  Food makes you feel better – EAT!  
• You’re so ugly because you’re fat.
• The teacher (gently) teases you about your new neon shorts. It feels like she's criticizing you. SHAME!  She hates you! She thinks you look stupid! FEAR!
• You realize you forgot to bring your (point card/ planner/ homework...).
• Be good.  Be quiet.  Be helpful!  Don’t let anyone see the real you.  They won’t like you if they find out how bad you really are. They'll make you go away!
• FOCUS!   Don’t let anyone see you don’t understand.  You didn’t do that right.  You’re stupid!  Everyone knows!  Why is it so hard to focus?!
• You have an argument with a friend.  You have to mediate between your friends who are fighting.  You hurt Maddy’s feelings because you don’t want to hang out with her.  Steven is in trouble again, and you feel you should talk him out of doing stuff like this.
• You're overwhelmed, but you don't want anyone to know. You ask to go to the nurse. Will they let you go? Will the nurse get mad? Will she send you back to class? Will they follow the Safety/ Crisis Plan? Will the school counselor be in her office?
• You sit next to someone awful on the bus ride home. You're a bad person for thinking they're awful and not liking them.
• You see someone or something that reminds you of a time when you were hurt or scared. Your heart races and you feel like you're there all over again.
• There’s nothing good for snack. You worry you may never get food again.
• Mom mentions you left all the lights and TV on again when you left for school. SHAME! She hates you and will make you leave because you're bad. FEAR!
• You forgot to feed the dogs.  You're a horrible person. GUILT and SHAME
• You arrive home and check your FB/texts – you’ve got messages from biofamily, your ex-boyfriend wants to talk, your BFF wants to know why you can’t come over and hang out?  GUILT
• Mom reminds you to do your chores/ homework/ eat a snack, but you tell her you are too stressed and go for a stalk in the backyard.  Is she mad at you now?  You walk and walk, but you can't turn off that voice in your head telling you all the bad things that will happen to you.
• You scoot upstairs when mom’s not looking so mom won’t remind you to do your chores.  You fall asleep for 2 hours, even though the doctor told you not to nap because it messes up your sleeping even more.  GUILT
• Your tummy hurts, as it so often does, but no one cares.  
• Dinner is late and you’re hungry.  Dad reminds you to wash dishes.  You HATE washing dishes. Dad is yelling at you! Dad hates you! He's going to make you leave!
• Bedtime, but you’re not tired.  You read, text, and watch YouTube videos until you get a little tired – long after midnight. You wake up several times in the night. You're exhausted in the morning.

How many spoons do you have left? What do you do when you run out of spoons by lunchtime?

SSI For Your Adult Child

What is SSI?

*Supplemental Security Income Program (SSI)*

Supplemental Security Income, or SSI, is a federally funded, needs-based, disability program that pays recipients a set monthly amount. The SSI program provides monthly cash assistance payments to aged, blind, and disabled persons (including children) who have limited income and resources. The Federal Government funds SSI from general tax revenues.

What is SSDI?
Social Security Disability Insurance pays benefits to you and certain members of your family if you are "insured," meaning that you worked for at least a certain period of time (see below) and paid Social Security taxes. To qualify for SSDI you must have Social Security work credits. These credits are based on your total yearly wages or self-employment income. You can earn up to four credits each year.

The number of work credits needed for disability benefits depends on your age when you become disabled. Generally, you need 40 credits, 20 of which were earned in the last 10 years ending with the year you become disabled. However, younger workers may qualify with fewer credits.

• Before age 24--You may qualify for SSDI if you have 6 credits earned in the 3-year period ending when your disability starts.
• Age 24 to 31--You may qualify if you have credit for working half the time between age 21 and the time you become disabled. For example, if you become disabled at age 27, you would need credits for 3 years of work (12 credits) out of the past 6 years (between ages 21 and 27).

If you are a parent who receives Social Security Disability Income (SSDI) because of a disability that prevents you from working or you are receiving Social Security beneftis after you've retired (and you are at least 65 years old), your minor child can also receive a monthly cash benefit until the child turns 18.

Adults Disabled Before Age 22 (Child's Benefits)

An adult disabled before age 22 may be eligible for "child's benefits" if a parent is deceased or the parent starts receiving retirement or disability benefits. We consider this a "child's" benefit because it is paid based on a parent's Social Security earnings record, not the child's.

The "adult child"—including an adopted child, or, in some cases, a stepchild, grandchild, or stepgrandchild—must be unmarried, age 18 or older, and have a disability that started before age 22.

Children who became disabled prior to the age of twenty-two are eligible to continue to draw SSDI benefits based on their parent’s earnings record. This is usually a higher amount than SSI benefits (your child will receive whichever benefit amount is higher). So if either parent is retired or on SSDI look into this! {More info on this later in this post.}

Qualifying for SSI/SSDI

To be medically eligible for SSI, the applicant must be able to prove a medically determined impairment that severely impacts their ability to work for a minimum of twelve (12) months, and the severity of that disability has to be such that they cannot return to their prior work or any other work that they would be expected to do based on their residual functional capacity. 

We have all known people with diagnoses, such as bipolar disorder, cancer, Type I Diabetes, heart disease, Chronic Fatigue Syndrome, Multiple Sclerosis, Autism, and/or a myriad of other severe conditions, who work productively for many years despite their diagnosis(es). 

Conversely, someone with what might be considered a "mild" disability (such as a borderline IQ, PTSD, Anxiety, Bipolar Disorder, FASD, ASD...) can qualify for SSI/SSDI. 

The SSA's main focus is on how the person's disability impacts their ability to work and support themself. 

Compassionate Allowances

A diagnosis alone does not automatically entitle an applicant to SSI or SSDI benefits unless the disability is a Compassionate Allowance.  These are conditions Social Security has predetermined as medically eligible, which means the individual does not have to prove severity and impact of the condition – just providing proof of the condition is enough.  

For example, if an individual has Down Syndrome, the case will be processed in less than a month when the family provides documentation of the diagnosis, such as a genetics lab report or a psychological evaluation.

 
These conditions primarily include certain cancers, adult brain disorders, and a number of rare disorders that affect children. The CAL initiative helps reduce waiting time to reach a disability determination for individuals with the most serious disabilities. 
List of Compassionate Allowances Conditions

 

Severe Medical Condition

A Severe Medical Condition is an impairment(s) considered severe enough to prevent an individual from doing any gainful activity (or in the case of children under age 18 applying for SSI, severe enough to cause marked and severe functional limitations). Most of the listed impairments are permanent or expected to result in death, or the listing includes a specific statement of duration. For all other listings, the evidence must show that the impairment has lasted or is expected to last for a continuous period of at least 12 months. 

Listing of Impairments
The listing is divided into categories for each major body system
This is the one for mental health disorders 12.00 Mental Disorders - Adult

The absence of a listing-level impairment does not mean the individual is not disabled. Rather, it merely requires the adjudicator to move on to the next step of the process and apply other rules in order to resolve the issue of disability.

In other words, even if you don't have a disability on this list, you may still qualify.

NEEDS-BASED

There are two components to qualifying for SSI/SSDI benefits. One is having a disability that impairs/prevents the person's ability to work and support themself. The other is that the person needs financial support.

If someone else provides all or more of the individual's support, then the individual will not qualify for SSI/SSDI. This is one reason it is very difficult to get SSI/SSDI if you are married. {Marriage and SSI Benefits}. 

If a minor has a disability, the parents'  household income is the qualification used to determine the child's need for support. This is why it is best to wait until the child is 18 to apply. Also, child support and adoption subsidies are considered income. (The only time child support and other subsidies are not viewed as income is when the child support or subsidies are directed into a Supplemental Needs Trust as decreed by the separation agreement.)

If the individual with the disability is living with his/her parents the SSA might assume the parents are providing 50% or more of support. It is essential that you show that your child is expected to pay his/her own way (paying rent and bills - see more below). 

Disqualifications for SSI subsidy: 

• able to work enough for income to exceed $1400 per month (as of 2018); 
• receiving an adoption subsidy/ trust fund/ annuity that is more than the subsidy amount (in 2018, $750/ mo); - one way around this is to have these monies go into a Special Needs Trust or something similar, these trusts are specifically designed to allow the person to receive SSI/SSDI benefits.
• receiving SSDI that is more than the subsidy amount; 
• supported by someone providing all living expenses, including institutions like prison;
• if have more than $2000 in assets (although there are ways around this)...

{TIP:  ABLE accounts act as “safe harbors” for resources.   Individuals with more than $2,000 in resources/assets will not pass the means-testing requirement for SSI.  By using an ABLE account instead of a savings account, an individual can save up to $15,000 each year without violating the regulations restricting resources to $2,000 or less.}

Who can apply for SSI?

• Are age 18 or older;

• Are not currently receiving benefits on your own Social Security record;

• Are unable to work because of a medical condition that is expected to last at least 12 months or result in death: and

• Have not been denied disability benefits in the last 60 days. If your application was recently denied for medical reasons, the Internet Appeal is a starting point to request a review of the medical determination we made.

• Have a financial need for support.  

 

You've heard that most people get denied the first time they apply.  We were informed that this was because most people don't PROVE that they (or their child) have a disability.

When Should We Apply?


It takes about 6 months for the person to be approved (or denied!). Start gathering the information you need to start the process of applying for SSI at least 4 months before the 18th birthday. You don't want to actually apply until age 18. Applying while your child is a minor, means your child will most likely be denied because a minor child's eligibility is based on the parents' income. 

What Is Needed To Apply?

• List of your medical conditions

• Information about Doctors, Healthcare Professionals, Hospitals and Clinics

• Names, addresses, phone numbers, patient ID numbers, and dates of examinations and treatments

• Types and dates of medical tests you have had and who sent you for them

• Names of medications (prescriptions and non-prescriptions), reason for medication, and who prescribed them

• Other medical records that may be available from vocational rehabilitation services, workers compensation, public welfare, prison or jail, an attorney or lawyer, or another place 

At first glance, this seems easy.  This can be the hardest part!!  


The hardest part for me was the Dates - of every diagnosis, every hospitalization, every psych eval, and every meeting with a specialist (it helps to know the date started with the provider, the date of the last appointment, and the date of the next scheduled appointment). 

Not to mention the names, addresses, and phone numbers of all of these, plus every doctor, psychiatrist, therapist, agency...  

I highly recommend that you continuously Document, Document, Document this helps with this very tedious step!

SSA does not accept copies of your child's psychiatric evaluations or any report.  They have to confirm it themselves. That's why they want the contact information.

TIP: Make sure that you submit medical records that clearly show not only the diagnoses of your condition, but also demonstrate the severity and impact of the conditions(s) such that you cannot perform substantial gainful activities. The best documentation includes psychological evaluations, letters of medical necessity, DMA6 forms, and IEPS.

You can request additional documentation, such as a letter of medical verification from your treating healthcare provider, to help strengthen your case.

Getting Help With The Process - Appointing a Representative

This is what the SSA office says:

IF YOU WANT HELP WITH YOUR CLAIM, YOU MAY APPOINT A REPRESENTATIVE TO HELP YOU:

•  Complete and file forms;
•  Gather information and file it with the SSA;
•  Review your file and understand the law;
•  Get information from SSA about your claim, including notices and letters, just as you would;
•  Represent you at informal or formal hearings;
•  Give SSA evidence for you; or
•  Help you with your appeals. (See our Chapter on the APPEALS PROCESS)

HOW DO YOU APPOINT A REPRESENTATIVE?

You must sign a statement naming (or in other words "appointing") your representative. SSA has an "Appointment of Representative" form that you can use. You can obtain it online at www.socialsecurity.gov/online/ssa-1696.pdf or call SSA and ask for Form SSA-1696.

 Your representative does not have to be a lawyer, but he or she must have certain qualifications. For example, attorneys must be licensed and all others must have good character and skills to help you. Also, the representative cannot be someone who is disqualified or suspended from representing individuals before the SSA or is prohibited by law from acting as a representative.

 An appointed representative's duties are different from those of a representative payee.


IF YOU THINK YOU CAN'T AFFORD TO APPOINT A REPRESENTATIVE

If you do not have a representative and SSA denied your case, they will give you a list of legal referral services, legal service organizations (for example, local bar associations, legal aid societies, legal service corporations, and law schools with legal aid programs), and community organizations in your area that may represent you or help you find a representative at no charge.

The representative you appoint may not charge you a fee that is more than the amount SSA authorizes.

ONLINE APPLICATION!

Gather all your documentation, and you're ready to apply!  The Online Application is super easy and you can easily save it to come back later or stop to find some piece of information you didn't know you needed.

Filling Out The Forms

1. Focus on how the disability impacts the person's ability to work and support themself when answering questions. These are the only criteria that SSA cares about.

Don't say something like, "I have severe pain and go to the hospital all the time," when describing disabilities. Instead, focus on how the disability interferes with daily life and the ability to work. 

"Because of daily pain caused by my ________ (disability), I have trouble concentrating to the point that I am often unable to focus on simple tasks like paying our utility bills and have even gotten lost driving to the doctor's office." 

"Medication side effects have caused severe weight gain, which causes terrible joint pain and prevents my standing for long periods of time and I now need to use a walker." 

"My anxiety frequently prevents me from being able to handle going to work (or get out of bed), to the point that I have lost jobs and find it difficult to work enough hours to provide for my needs."

It is very important to focus on your WORST DAYS when filling out the paperwork!

2. Focus exclusively on the worst days when answering the questions. Although necessary, this can be very difficult for people, especially after years/decades of being encouraged to focus on the positives and the things that can be achieved.

 Despite being necessary, having to put into writing their limitations and things they can't do and/or can't do all the time, can lead to feeling like a failure which can lead to denial and/or procrastination/avoidance of completing the forms. This is one reason it might help to have someone else (like a parent or representative) help fill out this part.

What Next?

Interview - If and when the SSA has questions, they will eventually arrange an interview.  You can go in or do this on the phone.  We chose to do this on the phone.  They mostly clarified and asked the same questions that they'd asked in the paperwork. My daughter gave them verbal permission to speak to me for most of it, although there were a few questions they required her to answer personally.

Verification of records - Each and every medical professional, hospital, agency, etc that you listed will be contacted and asked to submit a report verifying your claim. If you want to hurry things along, you can give a heads-up to these people to expect this request and encourage them to submit the requested reports promptly It also might help if you encourage them to focus or emphasize things that will help your case. It can make it easier for professionals to write reports if they know what kind of information the person/agency is looking for.


Adult Function Report 
Besides the application, disability report, and medical records, Social Security uses your responses to other questionnaires to determine whether you are disabled according to the Social Security Administration’s definition of the term. The purpose of these questionnaires is to learn what kind of impact your medically determined impairment is having on your daily life.

When filling out the reports, think of your worst days, not your best. 

The most used of these questionnaires is the Function Report- SSA 3373.  For many claimants, this is a difficult form to complete, because it asks many open-ended questions about your life and the response time to get it completed and tuned in is short, usually 10 days. 

While this form is prepared by you, and not a “professional,” it is an important form.

 Your responses on this form will likely not “win” your case, but they can cause your application to be denied!

The functional report is probably the hardest one to fill out because the questions are so subjective and emotional. All the other forms are pretty much fill-in-the-blank with facts.

We're taught to focus on our skills and strengths. This form is saying, "Tell us why you're incapable of being self-sufficient and unable to work or contribute." Putting all this negativity down on paper feels like you're calling yourself a failure.

I helped one young adult with multiple disabilities (including Bipolar 1 and Chronic Concussion Syndrome) that didn't end up being awarded SSI. I strongly believe it was because the girl *could* work, *wanted* to work, and was even *capable* of getting work and doing a good job... for a while. Then she would have a flare-up, get sick or need surgery, get depressed or anxious to the point that she couldn't get out of bed... and she couldn't work.

This would happen often enough that she wasn't able to keep a job for more than a few months. So she *could* work, but not for 12 months in a row, and she was limited to minimum wage jobs, because of her poor job history.

This means she was eligible to receive SSI, BUT she couldn't admit it without feeling like a failure. She wanted to focus on her strengths and skills and got very upset, shut down, and overwhelmed by the need for focusing on her limitations.

I wasn't part of helping her fill out the functional report or her interview with the SSA worker. I did help her prep for them and tried to help her understand that it was OK to talk about the issues that kept her from working and caused her need for SSA support, but I'm pretty sure she didn't follow my advice and that was the primary reason she was not approved to receive SSI benefits. 

Here's a sample of the types of questions and answers on this questionnaire, and the responses that "Kitty" wrote.

Keep Copies of Your Documents

Be sure to keep a copy of everything!!  This gives you something to refer to when you're interviewed and also when SSA claims they never received it (happened to us twice!). Also, you'll have a copy with the date you sent it.  

You might want to take an additional step and submit your submission through certified mail.

Denied for SSDI - When you apply for SSI, technically you are also applying for SSDI. Don't freak out when you get a letter stating your child is denied for SSDI! This simply means your child does not have enough work credits. This has nothing to do with eligibility for SSI.

 

AND THEN YOU WAIT...
             AND WAIT...
                             AND WAIT...

Just when we'd finally decided they were missing some paperwork, or they forgot about us, or she had been denied...

We got a letter!  

The letter stated that if we didn't contact a certain representative with the SSA with the "needed information" by the deadline (less than 4 weeks away) then our application would be denied.  No mention of what the "needed information" was.  

We called the representative first thing Monday morning.  The message said the representative was in the office but would return our call in 48 hours or more.  

Since Kitty couldn't/ wouldn't talk to them on her own, she had to verbally give permission at the beginning of the interview to speak to me. Which means that we were glued together at the hip until they called.  

Hang In There!

We waited 4 days and left another message. No answer. Called again and again on the following Monday morning, but the phone system wasn't working. We then tried calling the Federal SSA but spent  2 1/2 hours on hold only to find out we had to talk to our local SSA office. We tried calling the local SSA using a different number than the one we had for the representative and discovered that system was broken too.  

We went in person to the local SSA office.  Waited in the lobby for over an hour, only to be told that the representative had already left for the day. (They close at 3pm and it was only 1pm!).

2 more days and the representative finally called to make an appointment.  It, of course, was Friday so it had to be the following week.  We were told to bring in copies of Kitty's pay stubs, and that was it, that was the "needed information." Something we could have mailed in weeks ago.  

When we arrived for the appointment (waiting almost an hour in the lobby), we were told she had already been awarded SSI and all I needed to do was sign a piece of paper stating I was being appointed Representative Payee.  

Have Your Questions Ready

It wasn't until later that I realized we'd focused so much time ordering a new Social Security card (Biomom hasn't returned Kitty's card after repeated requests) and discussing SSDI for when Hubby and I retired or passed away, that I realized I hadn't asked important questions like... when do the payments start and when does her Medicaid start?


DON’T give up, even if you aren’t successful with the initial application.  Nearly half of all cases are approved at the appeals level.

Other posts about SSI

SSI How Does the Money Part Work?

Marriage and SSI Benefits

Adult Function Report Questions

Disclaimer

This post was written in 2017, much of the information has been updated, but may no longer be current, correct, and/or applicable in your situation. The information provided here is for educational and informational purposes only and is not intended to be a substitute for a consultation with a professional licensed or knowledgeable in this area.

I am an individual contributor and not authorized in any way to give legal, financial, or medical advice. While I have made strong efforts to ensure that the information in this blog is as correct, complete, and up-to-date as possible, much of what you will find here is based on my personal opinion and experience. I assume no responsibility or liability for any errors or omissions in the content of this site. 

The information contained in this site is provided on an "as is" basis with no guarantees of completeness, accuracy, usefulness, timeliness, or of the results obtained from the use of this information..." Please research and verify any and all information you find here. Use at your own risk.