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

Tuesday, 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.

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.

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.

  • 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, 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 -
 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.^ 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.  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 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/ 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
  • 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
  • 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. 
  • 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 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.   
  • 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.
  • Bedtime, but you’re not tired.  You read, text and watch YouTube videos until you get a little tired – well after midnight.

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.

Who can apply?
  • 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!!

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.

The 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 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.

Here's a sample of the types of questions and answers on this questionnaires, and the responses that "we" 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 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 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 first payment 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.

Money is paid starting from the first of the month following submission of the application, so Kitty will have many months of "backpay."  How we're handling that is a post for another day.

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?

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.  

Ex. Kitty earned $707.91 in May
-  20.00 (by law $20 is not counted)
-  65.00 (by law $65 of wages is not counted)
-311.46 (by law they don't count 1/2 this amount - 1/2 of $622.91= $311.46)
+ 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're planning on asking for this to be re-evaluated by submitting this form - "Fair Share" Statement, but haven't submitted it yet.

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. 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
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'm assuming they will 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 may 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.

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.