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!

Sunday, December 21, 2014

Holiday (and other Traumaversaries) Trauma Tips - Updated!


Holiday (aka Traumaversaries) Trauma Tips 

Holidays, celebrations, birthdays, vacations, "traumaversaries"... WHY do they act this way?

Between scary creatures and a sugar rush on Halloween, the start of many schedule changes with Daylight Savings Time, family gatherings on Thanksgiving stirring up feelings about family members not present (including bio), and feeling judged to see if you’re naughty or nice… there is no shortage of potential trauma and upset during the holiday season.  For parents of children with trauma and special needs, the holiday season, birthdays (theirs and others), adoption and TPR days, and other "traumaversaries," can create significant disruption and spark some serious trouble.

Around here we usually hold our breath in October and don’t exhale until January,” says Barbara Streett, a parent of one special needs child, 10, and two neurotypical kids, 7 and 5, respectively.  “If it’s not one thing at this time of year, it’s most definitely another.”

This is a great article about why our children act the way they do on holidays. The following is a paraphrased excerpt from this article:
WHY: Adopted children have been abandoned causing deep shame and feelings of being unlovable and unworthiness of anything good. This has nothing to do with the reality that they are now in a safe, loving family. So they sabotage to gain control of what they know will be inevitable disappointment and if they trigger us into anger then it just validates their beliefs. 
WHY: "Big Days trigger Big Feelings. No matter the extreme (good or bad), it is all INTENSE and triggering." 
WHY: Holidays rarely have routine or structure and they are full of expectations and surprises (what is in the package? did she get something better than me? will I get what I desperately want? can I handle that?). The stress is overwhelming and scary! Children react to feeling unsafe by going in to fight/ flight or freeze mode (meltdowns, shut downs, attempting to totally control the situation which is impossible...). 
 WHY: "Big Days are a reminder of what should have been but wasn’t, all that was lost, all that will never be."
TIPS:
  • Limit the "runway." Downplay the hype and discussions of  expectations as much as possible. Avoid things like decorating for Christmas as long as possible. Not letting a child know you are leaving for a trip until the day before or even the day of prevents them angsting over it and sabotaging it.
  • KISS - Keep it simple! Keep things as lowkey as possible, don't make elaborate plans, instead schedule lots of downtime and avoid overwhelming/ overstimulating situations whenever possible (like shopping or parties). 
  • "We cast simple, manageable vision for Big Days: this is what we’ll do, this is who will be there, this is what we won’t be doing, this is about how long it will last."
  • Use calming techniques when you see a child getting overwhelmed or ramping up. 
  • Acknowledge and talk about the child's "Big Feelings." "We assure them that whether they get a handle on it or not, they could not possibly make us love them less, and if the worst thing that happens is they have a bad day, then no big deal."
  • Remember that we as parents are human too! "We’ll just keep working, keep trying, keep loving, and keep forgiving ourselves when it all goes sideways. You are not alone, know that.

Christine Moers says one of the most important things to remember, "YOU CAN'T LOSE CHRISTMAS!"
 "Trauma has jacked with the brains of our kids. In a stressful moment/week/season they get stuck in a part of their brain that was meant to only be visited on occasion, in extreme circumstances. Our kids also find themselves regressed emotionally and developmentally in those times. They can be, quite literally, a three-year-old in a 12-year-old body. 
Imagine a three year old kicking and biting and hitting two days before Christmas. Throwing toys and scratching up the family dining room set. Having a massive tantrum. Would we take Christmas away? Nope. That's crazy talk. A three year old cannot understand the magnitude of what they're doing when they feel out of control. We would redirect in the moment. When they are calm, we would reconnect with them and give them an opportunity to do the same. That is how we heal and guide young children. Our kids need the exact same thing. There is a reason they do these crazy things that are just so beyond description. They are camped in a part of their brain that wanted to kick them out long ago. 
Family celebrations and holidays are an opportunity to imprint into their minds and hearts: you are a part of this family. Period. Finito. You can never lose that. "
The challenges associated with holidays like Thanksgiving, Hanukkah, Christmas, New Year’s, Gotcha Days, and birthdays can be overwhelming for a family with special needs, but with preparation and awareness of the individual family member’s needs it can be done!

A few minor tweaks to holiday rituals can go a long way.
  • Instead of big family gatherings with lots of expectations, try downsizing!
  • Instead of big family gatherings, try spacing out visits with one or two relatives at a time.  Have some quiet activities for the child in case they become overwhelmed.
  • Try to stick closely to your child’s usual schedule - regular nap time, bedtime and meal times are important! 
  • If you are visiting, try sending family members a letter beforehand with some suggestions about how to make the child feel most comfortable (See appendix for sample letter.)
  • Set up a safe place in the house for your child to go if he or she just wants to be alone.  Stock this place with a few soft toys, a quiet activity or two and some books, maybe an MP3 player filled with soothing music.

    If you decide to travel, here’s a few tips: 
  • Take electronic gadgets AND the chargers.  There are inexpensive converters that can be plugged into your car allowing you to charge items that normally plug into the wall or even USB.
  • A personal DVD player or laptop stocked with movies and/or games.
  • Pack a personal back pack for child with new dollar store items, include a few favorite toys, pencils, snacks etc.  
  • A bag with new or rarely used items – like travel games and snacks, that can be introduced at various intervals throughout the trip.
  • Small heavy blanket, for sensory kids.
  • Travel pillow and soft toy/lovey.
  • Headphones.
  • Ask flight attendants and hotel about accommodation’s available to make your trip a family success.
  • Plan for frequent stops to move around (look for places with playgrounds).  Think about traveling at night, but if you travel during the day, try to stick as closely as possible to routines – especially mealtimes and bedtime.
  • Medications.
  • Visual pencil box for travel and helping child understand sequence of events.  These are simple pictures, stored in a pencil box, with Velcro dots on each picture.  The box has 3-4 Velcro dots (the soft side of the Velcro) on the outside.  Pictures are placed on the box so the child understands the order of activities.  For example: a suitcase (to show packing), a car, food (to show will eat lunch), then a picture of the destination (ex. Grandma’s).
  • Think about putting your child in respite and going without him/her! Just be sure it's not treated as a punishment for the child (it can be a low-key fun time with a family friend or relative). Trips can be just too overwhelming for some kids and can ruin the experience for everyone else.  "Re-entry" (coming back from time away from your child) can be super hard, but if it gives you some respite and a chance to recharge then most trauma mamas agree the re-entry meltdowns are worth it.

Remember, every child is different, and there is no flow chart for how this works.  The overarching goal: Be flexible, and remember that no tradition is more important than the comfort and happiness of your kids.

Holidays and the like are supposed to be special times for the whole family.  Most of us grow up expecting them to be memorable and fun.  When we have children, we experience these dreams and expectations even more acutely.  It’s perfectly natural, then, to experience an emotional roller coaster when presented with the challenge of navigating holidays with a child with special needs.  One key to managing this inevitably frustrating situation is learning to let go.  Set realistic expectations and be flexible.

You have to be willing to modify certain traditions, or forget them all together,” says Barbara Streett, parent of a child with autism. “What you want or envision may not be the best thing for your child, so you have to change your plan accordingly.”


  • Holidays are about the kids, but a successful holiday doesn’t have to look like a Norman Rockwell painting to make the kids happy.
  • Remind yourself that it’s OK to let go of certain traditions that just won’t work… for now.
  • Allow yourself to be frustrated and anxious; there’s no shame in that.  When you feel frustrations welling up, take a step back and focus on what you’re doing.
  • Frequently remind your child that there is nothing they can do to lose Christmas.  This is frequently such a source of anxiety for children that they sabotage it rather than take that chance.  In the long run this “naughty” behavior will usually stop as the anxiety decreases.
  • Remember what your child’s “currency” is and use that to interact with him or her.
  • Streett is careful to add that especially at holiday time, the definition of a family meal should also be flexible.  “If your child doesn’t want to eat with everybody else, that needs to be OK; if the child needs to take a break, let him go,” she says. “The sooner you stop fighting the fact that these kinds of traditions must be set in stone, the more enjoyable the holiday will be.”
  • If your child tends to destroy gifts (very common when they don’t feel they deserve gifts or for now aren’t able to accept what they mean).  Try inexpensive gifts from the dollar store. The bigger the better.

At our house (2 siblings adopted as teens from foster care and 2 neurotypical biochildren), we realized our children were overwhelmed by the holidays so we started simplifying things with some new traditions:

Halloween - Children of trauma can be both attracted and triggered by the gore and scary fantasy associated with Halloween (not to mention the sugar rush!).  I love Halloween, but my kids just couldn't handle it.  We chose to turn off the porch light and have a small family Halloween party.  We ordered pizza and soda (a special treat), and I bought each child a bag of their favorite kind of snack size candy that was just for them (explained as, "This way you don't get a bunch of stuff you didn't like!"), made Halloween shaped sugar cookies they could decorate themselves, and watched a non-triggering Halloween movie (usually the "made for TV" Disney movies).  As they got a little better about handling the holiday, we left the porch light on and the kids took turns handing out treats to the little Trick or Treaters.  When they hit their tweens and young teens we dressed up and did a quick trick or treating walk of the block as a family.  They were allowed to have one or two friends join us afterward for a small Halloween party.  By their late teens they were told they were "too old" for Trick or Treating, and we went back to having a small party and handing out treats.

Our Christmas Traditions For us, Christmas is very low key. We have several traditions which seems to help anxiety levels, because the kids know what is coming next (helps them feel safer).
    Jesus' birthday cake
Jesus’ Birthday party – To alleviate some of the building of stress and anxiety of waiting for Christmas and change the focus from the gifts, we celebrate Jesus’ birth on Christmas Eve with a birthday cake and Jesus gifts, which are similar to New Year’s Eve resolutions (everyone writes on a piece of paper what they are going to give Jesus this year, usually something we think he would want us to do – like spend more time with the family or give more time to those less fortunate.  Each person can choose to read theirs aloud and then we put the paper on the tree. Then we read last year’s gifts and see how we did. Afterward we all eat birthday cake (helps my antsy ones sit through this, knowing there's cake when it's done!).

Christmas Eve presents -  Before bed we open our Christmas Eve gift - usually a pair of PJs, and a book or stuffed toy – depending on the child’s age.  This helps the younger children wait (and makes sure everyone looks nice for pictures in the morning!

Three Gifts - A few years ago we decided to start only giving 3 gifts to the kids on Christmas morning. (It was good enough for Jesus!). It has helped me out in many ways (the kids are not quite as fond of it).  Usually at least two of the three gifts that the children get are “themed” gifts. So it’s more than one item in the package.  The cost of the gift seems to be largely unimportant – the most envied (meltdown inducing) gift was a box of highlights that one daughter got and the other (RAD) daughter didn’t.
Taken some of the focus off of gifts and put it back on the “reason for the season.”
Reduced some of the pressure to get the exact same number and equivalent gifts for each of my 4 children (I remember my sisters and I counting gifts on Christmas Eve – cost wasn’t as important).
Decreased the clutter. My adopted children can’t handle too much stuff in their rooms or lives.
Reduced the cost! Christmas is expensive enough with 4 kids.
Made shopping easier. It’s HARD to find presents for teenage boys (assuming that like us you do not want to buy expensive electronic stuff he’s only going to break or lose anyway and/or can’t handle).
Less wrapping!
Less time sitting watching everyone open presents (better for my kids with ADHD).

Scarlet Claus
Santa - My biokids (7 and 10) still believed in Santa when the older kids (11 and 13) came in to our home the month before Christmas. We made it very clear to all the kids that if they said they didn't believe in Santa then Santa wouldn't bring them presents. My insistence that Santa is real (HE IS!) caused some issues with Kitty, because she decided that made me a liar). Santa used to bring the best present, but we changed that approach when we realized we didn't want him getting all the credit! We wanted the kids to know that we were supplying the gifts that said, "We know you, we love you and we are giving you these things because we want to show you how we feel." Santa still brought stocking gifts (although the kids knew we added to those), but he started bringing "family presents" - gifts for the whole family to enjoy rather than for each child. Over the years, Santa has brought, a dog (a red husky named Scarlet Claus), a big screen TV, a Wii, a Clearplay DVD player with a bunch of movies they hadn't previously been allowed to watch...

Birthdays - Even the bio kids start to go nuts about 2 weeks before a birthday and for about a week after. Not just their own birthday, any family member's birthday. When the biokids were little, I used to throw big parties with the whole neighborhood invited. We had balloon animals (made by a friend) and two homemade cakes (weird family tradition - long story!), costumes, activities, pinatas, slumber parties... we learned that this wouldn't work for our kids with trauma issues at Kitty's first birthday party with us. She spent the entire day in her (walk-in) closet with one friend (the youngest at the party). New tradition! Birthday parties are usually dinner out (child's choice) and include extended family (aunt, uncle, first cousins, and grandparents). If the child has a party (sometimes they're not in a good place - like just out of a psych hospital), then it's usually at home with maybe 2-3 friends. If it's to be a slumber party then only 1 friend. May sound harsh, but it was all they could handle. The biokids are introverts so they're usually ok with it too, but we have arranged to have all the siblings stay with the grandparents doing something fun while the child who can handle a bigger party has one. For the parents, we have a quiet celebration with family and then do something on our own without the kids.

"Gotcha Days" - We've never celebrated Gotcha Days. I feel this day is too traumatic. Yes, they are getting a new family, but it also symbolizes losing the old one. On the actual day of their adoption, we had lunch or dinner at a place of the child's choosing. Coincidentally, our kids' "Gotcha day" falls right around their birthday (2 weeks before for Kitty, and one day after for Bear) - another good reason not to have another party. We do celebrate the day the kids moved in with our family, but usually just with sparkling grape juice or cider (Kitty loves this stuff so reminds us every year) served in our fancy crystal champagne glasses.
    Helpful websites:
    Top Toys for children with special needs:  http://www.abilitypath.org/tools-resources/links--resources/abilitypath_holidaysurvivalguideforparentswithspecialneeds_2010.pdf

    Modelmekids.com - Model Me Kids® videos demonstrate social skills by modeling peer behavior at school, on a playdate, at a birthday party, on the playground, at a library, at the dentist, restaurant, and more. Designed as a teaching tool for children, adolescents, and teenagers with Autism, Asperger Syndrome, and developmental delays, the videos are used by teachers, parents, and therapists. Real children model each skill.

    Autismapps.com



    Sample Holiday Visit Letter – Adapted from http://www.abilitypath.org article –
    Holiday Survival Guide for Parents with Special Needs

    Dear Family and Friends:

    We look forward to seeing everyone for the holidays. I can’t wait to see everyone and celebrate
    together. Before we gather this year, I would like to share with you about ______________ and let you know how you can support him and our family.

    My son is loving, kind, and very affectionate. He loves to talk about his siblings, ______________
    and ______________, and camping. He likes to play Candyland, Legos, and with his iPod.
    He also has (attachment disorder/ autism/ sensory integration disorder...).

    Holidays are a time of year that ______________ looks forward to. However, the extended
    family and friends, decorations, and festive noises that the holiday brings can be frightening
    and/or overwhelming for him. They also cause him anxiety because there are so many new things
    happening that are different from his routine.  He is hypervigilant about new situations, and it reminds him of traumatic things from his past.  Please understand that this is not about his feelings about you or me.

    ______________ may need a quiet place to retreat to take in everything presented to him in this new and different environment.  Please have a quiet room available for ______________ so that he can have time to himself to process everything. This room should be off limits to everyone but ______________ and me (mom). ______________ is used to routine and all these changes can cause anxiety. Once ______________ can regroup, he may be OK to return. However, if something changes, we may need to leave suddenly.   Also, although we love being with family, we will need to leave at __pm to allow ____________ to stick as closely to his normal bedtime routine as possible.  Please support us in this.  It is very necessary to his well being.

    ______________  or I may appear bossy and controlling. This is to help him cope. ___________ needs structure, and often things have to be done in a way he is familiar with or else he may get stressed and frustrated. This does not mean you have to change the way you are doing things--just please be patient with ______________, and look to me (mom) to redirect this behavior.

    People with (attachment disorder/trauma/ autism/ sensory integration disorder...) often have certain behaviors to help themselves feel more comfortable and safe. ______________  is not trying to be disruptive or defiant; he is doing this to regulate himself in his surroundings. Please be respectful of these behaviors and look to me (mom) on how to handle this.

    _____________ often needs to get up and walk around (maybe even go to his quiet room) to regulate himself.   I ask that you not give this a lot of attention and continue eating and conversing.

    Please do not be critical of mine or my husband’s parenting skills. Remember that ____________ needs to be watched more closely than most children are his age. Like all parents, we do our best but are not perfect. Holidays are filled with new sights, sounds, and smells packed into a busy and often frantic household with a big tree plopped down in the middle of it. It is very hard work to incorporate (attachment disorder/trauma/ autism/ sensory integration disorder...) into this. I said it was hard – but it can be done. We have been doing this for ____ years, and although it is not perfect, it works for us.

    We are excited to share this holiday experience with you and look forward to seeing you,

    A Letter To Our Friends And Family During The Holidays (Things Adoptive and Special Needs Families Want You To Know)
    Another letter to family and friends.

    Sunday, December 14, 2014

    Trauma Mama Gift Swap/ Secret Santa - 2015 Update

    Edited to Add -
    2015: Several trauma mamas and I have decided to do a small Trauma Mama gift swap. If you are a trauma mama and interested in participating, please fill out the following form and put it in the comments (it will not be published) or email it to marythemommy at gmail dot com. Please be 100% sure that you are able to participate, remember there is another trauma mama who may be hurt and disappointed if you do not follow through.

    One of my favorite things to do at Christmas time over the last few years is to participate in the Trauma Mama Holiday Gift Swap. Unfortunately the people sponsoring it found that doing this for large groups quickly became too much for any one person to organize. For one reason or another, many people did not honor their obligations (which I totally understand as we are all trauma mamas and Christmas time is HARD!) so many mamas did not receive gifts. Many others tried to step in and fill the gaps, but a lot of needy mamas were hurt and disappointed.

     This year I participated in a small group exchange and I did a one on one swap with another mom. I was also an "angel" to a trauma mama who could not afford a gift for her child or herself. I'm so glad to be in a place in my life where I can do this.

    If anyone wants to organize their own gift swap or just exchange with a friend, here's a form I adapted from the From Survival to Serenity 2012 trauma mama holiday gift swap. I found it to be particularly helpful in finding just the right gifts. I hope this will inspire you to start your own group or just a one on one swap with another mom. Moms deserve special gifts under the tree too!

    Trauma Mamas Holiday Gift Swap Registration
    Please complete at least the required questions marked with an asterisk. All other "Get to Know You" questions are optional, but please do keep in mind that the more questions you answer, the better the person who gets your name will be able to connect with you. It will also help us in creating matches based on similar situations, geographic areas, interests, etc.
    **Hint** If you would like to answer the "Getting to Know You" questions, but don't have time to complete the whole form all at once, write out your answers in a word processing program and then cut and paste them into the form boxes when you're ready to send it in. Registration forms are due no later than November 15. All matches will be made on or before November 20. Unless there are special circumstances that need to be considered, packages should be mailed to their recipients no later than December 14. International packages will need to be shipped no later than December 1. We learned from sad experience last year that if they're shipped any later than that, they don't arrive before Christmas, even when they're coming from or going to Canada. .
    * Required

    Contact and Shipping Information*

    Name (first and last)
    Shipping Address
    E-mail

    Other Contact Information
    Examples: Blog, Facebook, Twitter, Google+, Pinterest, etc. You are also welcome to include a phone number or whatever other contact information you wish and/or feel comfortable sharing.


    I am 100% committed to participating in this event. *100% commitment means that I acknowledge and understand there is a very real mama with very real feelings on the other end of this swap. She's also a trauma mama who's been in or is still in the trenches just like I am. She's very likely put much of herself into preparing something special for another mama. I want her to receive something special this holiday season to remind her that she is loved, that the work she's doing is worth it, and that she's not alone. It would be very sad for her to be looking forward to receiving something special from a potential new friend, but not have it arrive. I will make sure that doesn't happen!
     Yes/No

    What if I need to back out? *If circumstances arise and I'm unable to keep my participation commitment, I will notify one of the organizers as quickly as possible so another match can be found for my assigned mama.
     Yes/No

    Shipping Confirmation *I promise to ship my package using a method that can be tracked, even if I have to pay a little bit extra in order to make that happen. I want to make sure my mama actually gets my package once I've sent it.
     Yes

    Getting to Know You
    These questions aren't required, but the more you share, the more the mama who gets your name will be able to get a feel for who YOU are outside of being a trauma mama. Not only does it help her be able to put together a special gift for you, but it will also help in deciding who you ultimately get matched with. One of the most fun aspects of participating in an event like this is finding others to add to your circles of support and friendship. If matches can be made among people with similar interests or family situations or whatever, they will be. Unless otherwise noted, these answers (along with your contact information) will be shared with the person you are matched with.

    Briefly describe yourself and your family. Describe your personality, share your general age, what your profession is, any special talents, etc. Share whatever you want about what makes you you. Also share a bit about your family including how many kids you have, their ages, are they bio or adopted, if adopted, how old were they at adoption, where they were adopted from, and whatever else you want to share.

    What type of activities do you enjoy participating in with your family?

    If you had spare time for hobbies or interests, what would they be?

    What are your top 3 favorite movies?...the ones you could watch over and over again and only love them more each time you see them.

    What are your favorite colors...both for decorating and for wearing?

    What is your decorating style? funky, contemporary, eclectic, shabby-chic, country, traditional, minimalist…

    Do you collect anything in particular? (coins, figurines, butterflies, angels, snowmen, etc)

    What are some of your favorite things?
    These would be things you love and enjoy having in your life and in your space

    What type of gifts would you most like? things to pamper yourself, accessories, crafts, soft cuddly items, inspirational items, food treats, things you collect…

    What types of things do you dislike?
    This would be things you smile sweetly at initially, but then they secretly end up in the trash bin later on.

    Do you have any allergies? Gluten free? Caffeine free?  Include food, chemical, metal, etc

    What are your favorite foods and/or beverages? Do you drink alcohol?

    Do you have any dietary restrictions and/or preferences?

    What are your 3 most favorite restaurants?

    What stores do you like to shop at when looking for a little something special for yourself?

    Is there anything else you'd like to share? ie: a particular religious affiliation, perhaps you celebrate a holiday other than Christmas, any unique life circumstances or situations, etc.

    I can help with this event by...
    If you have the time, sanity, and desire to help make sure this event continues to be a fun and fulfilling experience for everyone, please let us know.

    I am willing and able to ship my package internationally if needed
     Yes/No

    I am willing and able to be an "Angel Mama" if needed. Should the need arise, I can help out by putting together a second package for a second mama. Feel free to contact me if you need some help in this area.
     Yes/No

    I can help with event coordination and logistics if needed. Should the need arise, I can help with the coordination efforts and logistics of this event. I am willing to help out by working with the other event coordinators, sending emails to other participants as needed, or doing whatever else is needed to make sure the logistics of this event are manageable.
     Yes/No

    Tuesday, November 18, 2014

    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!

    Monday, November 17, 2014

    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).

    Thursday, November 13, 2014

    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*

    Wednesday, November 12, 2014

    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.


    Saturday, November 8, 2014

    When Adopted Kids are Older than Biokids

    My adopted children were older than my biokids too, and that caused some extra issues, because the bio kids 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).

    My son was very violent to everyone and my adopted daughter was aggressive toward my biodaughter (jealousy, pushing to get kicked out like everyone else has done, delayed emotional and socially - so tended to be more like a toddler who uses her hands not her words...).  For a long time we tried to treat the children equally, especially the girls.

    Here's some of the things we did (or I wish we had done sooner!).

    * 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.  Trust Jars/ Love Jars post - http://marythemom-mayhem.blogspot.com/2008/11/love-jar.html
     It was our job to keep everyone safe. We cared about them, but 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."

    *Stop treating them equally.  They are not equal! They have different life experiences, different interests, 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!

    ^This is actually how the FAIR Club got started.^  http://marythemom-mayhem.blogspot.com/2009/03/how-to-discipline-your-difficult-child.html My kids were constantly whining, "That's not FAAAIIIRRR!!!" I needed a way to discipline and structure their lives that was appropriate for each of 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!

    *Remember that develomentally (emotionally and socially) kids of trauma are a LOT younger. http://marythemom-mayhem.blogspot.com/2011/04/developmental-stages.html  If we expect them to "act their age," we're all going to be disappointed.

    *ABSOLUTELY no touching.  None.  Ever. The violent one especially, literally had to be out of arm 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.

    * Separate rooms. Originally the girls shared a room.  BIG mistake! We converted the playroom to a bedroom to separate them.  When I was a kid, my bedroom was the breakfast nook with some slatted closet doors bolted in to make a wall.

    *ABSOLUTELY no parenting.  The adopted kids felt they had a right to boss the biokids around and the biokids were good kids they just took it.  EVERY time we heard it, we reminded everyone that WE were 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 ("Mom said to come downstairs and do the dishes.") At most, they were allowed to say, "Mom is calling you."

    * Individual parent time.  Just you (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 the biokids too, because they deserved a break too.

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

    Tuesday, October 14, 2014

    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.

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

    We all respond to stress and anxiety differently.  Maybe with a Fight, Flight or Freeze response – Acting Out or Acting In. Our responses are greatly influenced by our perception of our environment
            (Ex.  Child tends to 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 very good at hiding their stress and issues – this doesn’t mean they don’t need help.

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

    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 child (or us!) gets overwhelmed and runs, dissociates, shuts down, acts out, hurts themselves or others...

    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 badly because you didn’t do your laundry.  Will anyone notice?  
    • You’re late, so no time for breakfast – meds don’t work as 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.  Driver frowned at you for not being ready. 
    • 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 acknowledge 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 go back to the Bus barn.  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.
    • Teacher (gently) teases you about your new neon shorts. It feels like she's criticizing you. SHAME!
    • 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 is 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 counselor be in her office?
    • You sit next to someone awful on the bus ride home. You're a bad person for thinking this.
    • You see someone or something that reminds you of a time when you were hurt. Your heart races and you feel like you're there all over again.
    • Bus driver (gently) teased you about your new neon shorts. She's criticizing you! She hates you! She thinks you look stupid!
    • There’s nothing good for snack, and you may never get food again.
    • Mom mentions you left all the lights and TV on again when you left for school.  She hates you and is going to make you leave because you're bad.
    • You forgot to feed the dogs.  You're a horrible person.
    • You arrive home and check your FB/texts – you’ve get 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 are going to 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 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.
    How many spoons do you have left? What do you do when you ran out of spoons by lunchtime?

    Wednesday, October 8, 2014

    SSI for your adult child


    What is SSI?

    *Supplemental Security Income Program (SSI)*

    Supplemental Security Income, or SSI, is a federally funded need-based disability program that pays recipients a set monthly amount. The SSI program makes 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 long enough and paid Social Security taxes. To qualify for SSDI you must have Social Security work 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 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 credit for 3 years of work (12 credits) out of the past 6 years (between ages 21 and 27).

    Specifically, if you are a parent who receives Social Security Disability Income (SSDI) because of a disability that prevents you from working or are receiving Social Security after you've retired past the age of 65, your minor child can also receive a monthly cash benefit until the child turns 18. However, 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 (your child will receive whichever is higher). So if either parent is retired or on SSDI look in to this!

    Denied for SSDI - When you apply for SSI, technically you are also applying for SSDI. Don't freak out when 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.
    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.

    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) has a disability.

    How do we apply?
    Adult disability checklist: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
    · Names 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
    Information about 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 is the hardest part!!  
    They will not accept copies of your child's psych evals or any report.  They have to confirm it themselves.

    The hardest part for me was the Dates - of every diagnosis, every hospitalization, every psych eval, every meeting with a specialist... Not to mention the names, addresses, phone numbers of all of these and every doctor, psychiatrist, therapist, agency...  Even if you document, document, document this is really hard!!

    ONLINE APPLICATION!
    The good news is that when you've got this, you're pretty much done.  Gather all your documentation, and you're ready to apply!  The Online Application is super easy and you can stop and look up or find some piece of information you didn't know you needed.

    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 interview.

    Verification of records - Each and every medical professional, hospital, agency... 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.

    Functional Report 
    Besides your application, disability report and medical records, Social Security uses your responses to other questionnaires to determine whether you are disabled within the Social Security’s definition of the term.  The purpose of these questionnaires is to learn what kind of impact your medically determined impairment is actually having on your daily life.  A diagnosis alone does not mean there is a severe disability entitling the applicant to SSDI or SSI benefits.  We have all known people with serious afflictions, such as bipolar disorder, cancer, diabetes, heart disease, chronic fatigue syndrome, multiple sclerosis, HIV and/or a myriad of other severe conditions, who work productively for many years despite their diagnosis/es.

    To be medically eligible for Social Security disability benefits, the applicant must be able to prove a medically determined impairment that severely impacts on 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.

    Most used of these questionnaires is the Function Report- SSA 3373.  For many claimants, it is a difficult form.  Why?  It asks broad questions about your life and the response time to answer is short, usually 10 days.   While it is prepared by you, and not a “professional”, it is an important form.

     While your response will likely not “win” your case, it can cause your application to fail.

    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 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 at the need for focusing on her limitations.

    I wasn't part of helping her filling out the functional report or talking to the SS worker. I tried to prep her for it though, and help her understand it was OK to talk about the issues that kept her from working and that meant she needed support, but I'm pretty sure she didn't.

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

    Be sure to keep a copy of everything!!  This gives you something to refer to when you're interviewed and when they claim they never received it (happened to us twice!) you have a copy with the date you sent it.  You might want to take it another step and mail it certified.

    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 hadn't gotten it...

    We got a letter!  Stating 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 as to what the "needed information" was.  We called 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 speak to them to tell them they had permission to speak to me.Which means we were glued together at the hip until they called.  We waited 4 days and left another message.  No answer.  Called again and again Monday morning, but the phone system wasn't working.  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.  Called the local SSA using a different number than the one we had for the representative, and discovered it was broken too.  We went in person to the local SSA office.  Waited in the lobby for over an hour, only to be told he'd already left for the day. (They close at 3pm and it was only 1pm!).

    2 more days and he 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.  When we arrived for our appointment (waited almost an hour in the lobby), we were told she had been awarded SSI and needed to sign a piece of paper stating I was being appointed Representative Payee.  It wasn't until later that I realized we'd spent 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?

    How does the money part work?

    The SSI disability benefit provided by the federal government is the same in all states. However, in most states, SSI recipients receive an additional supplementary payment from their state, giving them a monthly benefit amount that's higher than the federal amount ($721 in 2014).

    States That Pay the SSI Supplement
    Every state except Arizona, Arkansas, Mississippi, Oregon, Tennessee, Texas, and West Virginia currently pays a state supplement to its disabled residents who receive SSI.

    It takes about 6 months for the person to be approved (or denied!) to be received. Think about applying for SSI at least 4 months before the 18th birthday. You might want to open a bank account prior to the 18th birthday or at the time you apply for SSI. If you are the Representative Payee, you will have to open a Rep Payee account.

    Backpay. Benefits start from the first of the month following submission of the application. Since Kitty applied mid-April and was not awarded SSI until early October, Kitty will have many months of "backpay."  How we're handling that is a post for another day.

    Getting the actual monthly check can apparently take quite awhile.  We got the "backpay" pretty quickly. She was awarded SSI the beginning of October.  We still haven't received the monthly check. It's supposed to be direct deposit, but we can't figure out to whom we need to give the bank information. The last person we spoke to has not returned my calls - possibly because the call needs to be generated by my child.

    Update: Finally got time to actually go in and talk to someone at the Social Security office. It turns out that since I hadn't signed up for direct deposit the money went on a Direct Express card which works like a debit card. This card can be used to pay for things directly, or the money can be transferred into the rep payee account. For some reason we never received her Direct Express card in the mail (nor did we know to look for it), so she has 5 months of deposits on the card. I ordered a new card and it will take 7 to 10 business days.

    Direct Deposit. I got the direct deposit form at the SSA office and took it straight to the bank. It is now in place, but it took a week so the most recent benefit payment also went on her card. Unfortunately this means that because she didn't (couldn't!) spend the money on her Direct Express card, when it finally comes in she will have a little more than $2000 in her account. The guy at the SSA office thinks this may not be a problem since we can prove she didn't have access to the account so she couldn't have spent it, but... Anyway, I'll be pulling out $2000 immediately to pay her back "living expenses" so hopefully that will be an ignoreable blip.  What's left will go toward her spending money and bank fees.

    What if my child can't handle money?

    A Representative Payee is recognized and established by the Federal Government to give a person the right to assist a person with managing their money to pay for their living expenses. No guardianship is needed for this, but it can be an alternative to guardianship under federal law.

    You open a Rep Payee account with the first SSI check, which will be mailed to you (our "backpay" check got here first. The account is in the child's name.  You will only be a "financial agent" on the account. Don't worry, the banks know how to do this.

    Once you open the account, do not make any deposits into it.  The only money that should go in it is the SSI stuff. Social Security can make automatic deposits into the account.

    Kitty's SSI payment will be automatically deposited into the Rep Payee account and then I have a direct deposit draft of $15/week as her "Weekly Allotment" into her regular checking account to which she and I both have access.  Currently the plan is that except for the Weekly Allotment and bank fees all of the rest of the money in her Rep.Payee account will be used to pay her living expenses. (Living expenses are food and housing, and or other expenses like clothing etc. which are reported annually. The report does not request or require receipts for reporting. It is a very simple form.).  

    For now, Kitty will receive $15 a week, until she shows she's ready to handle more.  One way for her to demonstrate that she's ready will be to show that she can save up her money for something.  It is difficult for Kitty to understand, but even when she starts earning her own money again, she will still get the $15/week allotment (although it might go up to $20/week if her income is greater than her SSI amount.  This will continue until she can show she is able to handle her own money, including paying bills.

    How is the monthly benefit amount determined?

    There are different ways it is determined how much is received:


    • If the applicant is a minor then the amountt depends on the parent's income. Unless the parent is below poverty level then SSI is usually denied.
    • If an adult has worked more than a certain length of time, then they would receive SSDI which is based on a percentage of their income when they worked.
    • If an applicant is eligible for SSI and one of the applicant's parents receives (or later starts to receive) SSDI (ex. retires or develops a disability) then the adult child gets a percentage of what the parent makes or the SSI amount - whichever is larger.
    • If the applicant or receiver of SSI still lives at home, then it is assumed that the family provides food and shelter for free so the SSA reduces the amount by approximately one third.
    • If the applicant or receiver is being supported completely by someone else (for example in jail for longer than full calendar month) then they will no longer receive SSI - and will have to reapply if circumstances change.
    • If an adult has never worked, or hasn't worked long enough to qualify for SSDI, then they would receive SSI. The actual benefit amount fluctuates a little from year to year, but is usually a little over $700 a month. 


    The maximum benefit amount is $721 (in 2014).  If you work, even part-time, then this amount would be reduced by a percentage of your earned income.  For more details go here.

    Obviously if you make too much money (about $1500/mo) then you lose your benefits entirely, but they prefer that you work, so there are some incentives.  Including not counting some work expenses (such as uniforms, special equipment that helps you work, and transportation to and from work).

    Kitty worked part-time at a minimum wage job evenings and weekends throughout her senior year.  She increased her hours a little when she graduated in June, but then quit when she moved to Nebraska. For the months of April and May she made about $700/mo at her job - this is a Gross amount (vs Net) so it is number of hours worked by amount paid (minimum wage). This is how SSA figures wages - the actual amount on the paycheck does not matter to them).  

    Ex. Kitty earned $707.91 in May
    $707.91
    -  20.00 (by law $20 of wages is not counted)
    $687.91
    -  65.00 (by law $65 of wages is not counted)
    $622.91
    -311.46 (by law they don't count 1/2 this amount - 1/2 of $622.91= $311.46)
    $311.45
    + 240.33 (value of food and shelter*)
    $551.78 Total Income counted.

    $721.00 Maximum Benefit Amount
    -551.78  Total income counted
    $169.22 Total Monthly SSI Payment for May 2014 through July 2014

    Even though Kitty didn't work in July - her SSI payment for that month was based on the income she received in MAY.
    Even though Kitty didn't work in August - her SSI payment was based on the income she received in JUNE.

    Income she received in July and August ($0) affects her payment for September through October 2014.
    Income she received in September and October will affect her payment for November and December.

    In other words, income you receive for the 2 months prior effect your payment amounts.  If you stop working or start earning less, you need to tell Medicaid ASAP so they can increase your SSI payments (or start SSI and Medicaid again if they have stopped).

    *Since Kitty lives with family it is assumed we provide food and shelter for free, which SSI values at $240.33.  We planned on asking for this to be re-evaluated by submitting this form - "Fair Share" Statement, but never got around to it.

    At this point, if Kitty doesn't work, does volunteer work, or goes to school, then she will receive  $480.67/mo.

    What Situation Changes Do I Need to Report?
    Contact your local Social Security office to report:

    • You start or stop work, your wages increase or decrease.
    • Your bank account balance goes over $2,000. {You cannot accrue more than $2,000 in assets or you will lose SSI/ Medicaid.  Therefore if something happens to Hubby and me (we're planning on setting up a special needs trust to prevent this), someone names her as a beneficiary in their will, she wins the lottery, she's given something of value, she has savings of any kind (except for some very specific exceptions)... she will lose her SSI/ Medicaid.  Since at this point her medications alone cost >$2,000/ mo.  She NEEDS Medicaid!!}
    • You move;
    • Anyone else moves into or out of your household;
    • Someone in your household dies;
    • You marry, separate, or divorce;
    • Income or resources change for you or members of your household;
    • Your medical condition improves;
    • You stop or start attending school regularly;
    • You leave the US and plan to be gone for 30 days;
    • You are in a hospital, jail, or other institution for a full calendar month {This is why Bear is not eligible for SSI at this time - he is being fully "supported" by an institution (prison). We will start the application process for him when we have a release date and hopefully it will start soon after his release};
    • A felony warrant for flight or escape or a warrant for violating a condition of parole or probation is issued for your arrest.

    How does Medicaid work?

    Medicaid is health insurance.  http://www.medicaid.gov/ It has different types, including traditional and managed care options (STAR+PLUS). Every state has their own Medicaid system so if you move out of state, you have to transfer your Medicaid to the new state.

    We applied for Medicaid for Kitty the minute she turned 19 so she would have continuous health insurance while we waited to find out if she had SSI.  She was turned down.  They don't ask all the questions to determine disability that SSI does, so I can only assume they determined she was ineligible based on... I have no idea. Maybe her lack of proven disability? Luckily we still had Kitty on our private insurance so we only had to pay the co-pays for her medications (unfortunately about $200/mo).

    Medicaid starts the instant your child is awarded SSI.  You can then contact Medicaid directly and get information about your case. Just dial 211.  For Texas, you can also go online at https://www.yourtexasbenefits.com.
    Warning:  We've had a really tough time with this website and they don't do any tech support for it (when I mentioned a problem we were having accessing it to the lady at 211, she said that the website was for people who "understood computers".  I am very tech capable.  There is a glitch in the system that has nothing to do with my technical capability!  <-- a="" i="" little="" me="" obviously="" off="" this="" ticked="">

    I assumed they would mail my child a card for Medicaid, but I discovered that once you have a Medicaid number it is yours for life (like your Social Security #), so we could have started using her old card the minute her SSI was awarded - and therefore would not have had to pay co-pays on last month's prescriptions.  In fact they will not mail us a new card, so I better go find the old one!

    Because you receive your Medicaid through SSI - you don't need to renew it annually like you normally would; however, if you lose SSI, you lose your Medicaid, and you will have to reapply.

    We're still exploring how adult Medicaid is different from child Medicaid. For example, I don't think it covers dental.

    What is HIPP?

    HIPP is the Texas Health Insurance Premium Payment (HIPP) program. HIPP helps pay your health insurance payments. Your family can pick from more doctors and has more choices than with Medicaid alone.

    We have always had Kitty covered under both our private insurance and Medicaid, because there are a lot of things Texas Medicaid doesn't cover (residential treatment, dental, testing and evaluations, certain types of therapies...).  We had our private insurance listed as Primary and Medicaid listed as Secondary.  This means that our private insurance paid the bills, except for the co-pays - which were picked up by Medicaid.  From the private insurance's point of view, WE were paying the co-pays, which went toward our deductible. Toward the end of the year (sometimes faster if Kitty was in and out of psych hospitals a lot) our deductible would be paid and we could get Kitty some extra services that Medicaid didn't cover.

    So, in my "spare time," I'll be applying for this using this form.

    What if I Want to Work?

    Ticket to Work supports career development for Social Security beneficiaries age 18 through 64 who want to work. The Ticket program is free and voluntary.The Ticket program and Work Incentives allow you to keep your benefits while you explore employment, receive vocational rehabilitation services and gain work experience. Your cash benefits and Medicaid or Medicare often continue throughout your transition to work, and there are protections in place to help you return to benefits, if you find you are unable to continue working due to your disability.

    If you use an employment network or State vocational rehabilitation agency to get a job through this program, then you will need to report your earnings/ wages to it AND to Social Security,

    Reporting Wages

     To report earnings you have 2 choices, or maybe you need to do both. I'm not sure.

    1. Telephone Wage Reporting You can call it in or use an app. We called it in and were told that we also needed to mail in the pay stubs. This may be because she only held the jobs for less than a week each so there was no point in setting up the app. They recommend you call by the 6th of the month, but you can call at any time.

    2. Report by mail. The other option is mailing in a copy of the paystubs for every month by the 6th of the following month to your local Social Security office. Include the wage earner's social security number.


    What specific earnings information do I have to report?

    • monthly gross wages (that is the amount before taxes or other deductions are subtracted);
    • if you start or stop working;
    • increases or decreases in your wages or self–employment income;
    • if you start or stop a second or third job;
    • work expenses related to your disability; and
    • if you are blind, any work expenses.

    What earnings information does Social Security need to see?
    • every pay stub, including pay stubs for overtime, vacations, and bonuses;
    • if self–employed, copies of your Federal Income Tax Forms Schedule SE, Schedule C, Schedule C–EZ, or Schedule F;
    • receipts for work expenses related to your disability;
    • if you are blind, receipts for any work expense; and
    • receipts for expenses paid to reach your Plan to Achieve Self–Support(PASS) employment goal.

    NOTE We will give you a "Your Supplemental Security Income (SSI) Folder" to help you keep records that we need to see (for example pay stubs). {<-- count="" don="" hah="" i="" on="" t="" this="">