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!

Friday, September 11, 2015

Advocating for Yourself, Your Family, and Your Child - In That Order


All those well-meaning people who say you "SHOULD" (or should not) be doing ____________, have no idea what living 24/7 with a child with an attachment disorder is like (even those who have experience working with special needs children). They don't know YOUR child and how your child is with YOU - plus they work at most an 8 hour shift with your child, then they get to go home!  None of them take into account the needs of the rest of your family, your other children, your marriage, or you.  Their priority is the one child, not your family as a whole.

When my kids first got here, I was empathetic, calm and patient with them- maybe TOO patient.  I stuffed things down, let it roll off my back, and GAVE and GAVE and GAVE... until there was nothing left. Nothing left for my child, for my family and most of all, for myself. I was so burned out and overwhelmed that we were all miserable.

Here's what helped me:

1. CARING FOR THE CAREGIVER!!!  Remember what they say about when you're on an airplane that is in trouble, put the oxygen mask on YOURSELF first.  If you are not taking care of yourself, then you can't help anyone else.  As women, we tend to say, “I don’t have time to do that.”  We sacrifice ourselves for our children (as we were taught to do and as we are TOLD to do by all those "well-meaning" people involved in our child's lives.).  What we MUST do is make ourselves a priority.  It is not selfish.  It is a must!  You have to find what works for you.

There will be times when we feel defeated.  Like we just can't take one more step.  We want to run away.  We want to drop kick this kid. We are completely drained and have nothing left to give anyone. (You haven't Failed!)

Yet we keep giving and giving, until long after there’s nothing left, and if we try to stop we’re told we’re a bad parent for not giving our child what he/she needs.

  • The Five Love Languages (Acts of Service, Physical Touch, Gifts, Words of Affirmation, Quality Time) - I highly recommend figuring out your love language and teaching your family how to give you what you need to feel loved, but don't depend on your family to meet ALL your needs (especially your spouse and those with attachment issues!)!  That's not fair to them.
    My Love Language is Words of Affirmation, so I go online and help people so they will give me what I need (thank yous and praise).  It felt self-serving at first, but it was the only way I survived when I was so drained that my "love tank" felt like the Pit of Despair!

    I did “train” my husband in how to give me what I needed. I explained why it was important to me that my “strong, silent type” husband give me compliments and praise. Then I taught him how to do it! I started by walking in to the room and saying, “This Is Where You Say, ‘Wow! Honey, you look amazing!’” then I’d ask him to repeat. Eventually I’d walk in to the room, “strike a pose” and he’d compliment me. A couple of years ago, I went on a trauma mama women’s retreat. One morning, he texted me, “Rrowr! You look really hot today.” I had to explain to my friends why I had a huge grin on my face all day!
  • Therapy - for ME!  I needed to talk to someone whose primary goal was helping ME deal with my life.  In a lot of ways, our children are abusers, and we are battered women - if our children were adults, we would be told to run away as fast as we can, but since they are children, we are expected to just take it.  There is no way to not internalize years of this abuse.  I know I had PTSD from it.  I saw an EMDR therapist who specializes in PTSD, and she helped a LOT. Learning about my own issues, including my own attachment disorder, and accepting and dealing with them has helped a lot too. {Note: You've heard of Post-Partum Depression? Post Adoption Depression is very real.}
  • Medication.  It is not shameful, and it doesn't have to be forever, but a LOT of therapeutic parents I know (including myself) take medication to help with the anxiety and depression that come from parenting kids with trauma/ attachment issues.
  • Take Care of Your Body. I know you're going to ignore this, but GET SOME SLEEP!  DRINK LOTS OF WATER!  Eat Right.  Exercise.  Please do everything you can to take care of yourself.  No one else can.
  • Avoid Toxic People.  This can be anyone who is critical or demanding of you and/or your parenting (whether you agree with them or not, even constructive criticism can be too much), people who delight in talking about their perfect children or insist that your child is just being a typical ____ (boy, teen, 5th grader...) - usually with the accompanying "My ________ (child/ nephew/ neighbor's first cousin...) did that once.  It's totally normal.  You just need to ______ (spank them, use a sticker chart, ignore it...)."  They never listen when you try to explain how your child's intensity, duration, and motivation is totally different.  They think they understand your child better than you do, and they (or more likely the imaginary "someone" else) would be a much better parent.
  • Forgive Yourself for Not Being the "Perfect Parent" (which doesn't exist!) that could heal/fix your child.  Give yourself time to grieve the child that you wanted (who could love you back, heal with your help, be RRHAFTBALL (Respectful, Responsible, Honest, +Attitude, Fun To Be Around, Loving and Learning)... all the things you hear about from those "perfect people" who post about how amazing their kids are on FaceBook -by the way, no family is really perfect some just hide the skeletons better.  Martha Stewart, Fly Lady, and all those people on Pinterest do not have special needs children!  It's OK to eat macaroni and cheese on paper plates for 3 days in a row.
  • You Are the Expert on Your Family. I spent a lot of time trying to get validation for my parenting from people who just didn’t “get it.” I ran across people who felt their way was the only way. Sticker/ level charts, spankings, time outs… I was often told that if I followed their advice and my child wasn’t “healed,” then I must be a bad parent.
    There are many different ways to do “attachment parenting” and “therapeutic parenting.” Some are abusive. Some work better with younger kids/ older kids/ neurotypical kids… I finally learned to take what I need and leave the rest. I also had to learn that this changed over time. Ask me about the FAIR Club!
  • Follow the Advice You Give Others!!  You know what you would say to someone in your situation!  You deserve to be treated just as kindly.  When my kids say something negative about themselves, I fuss at them just as much as I would if they said the same thing about a sibling.  ("Kitty, don't say mean things to my little girl!!"). So many of my women friends say horrible, critical things about themselves that they would NEVER say about someone else. Be kind and respectful to yourself. Children (and others) respect those that they see us respecting, guess what they’re learning if we don’t respect their mother (us)?
  • Keep on Swimming!  Feel free to scream this SUCKS!!! ...and then keep putting one foot in front of the other.  Don't look at how far you have to go.  Focus on surviving the day.  You already have a 100% success rate!!  You and your child have survived every single day until now.  It may not have been pretty, but you've done it!!  Good for you!
  • Find Time to Laugh! Do silly, fun stuff with the kids. Do silly, fun stuff just to entertain yourself! There’s some great ideas in 99 Ways to Drive Your Child Sane and Brighten Up a Boring Day!
  • Treat Yourself!  Even if it's for the most minute of successes.  Have you seen that Wendy's commercial about a little girl who lost her baseball game, but they celebrate because she didn't get hit by a ball?!
    - I didn't smack my child when she screamed in my face for the millionth time (Get a mani/pedi - even if you do it yourself).
    - My kids ate dinner. Yes, fast food in front of the TV counts!  (Go on an ice cream "date" with one of my healthy children).
    - No blood was spilled in the last hour! (Take a hot bath with a trashy novel and a glass of wine after the kids go to bed).
  • Prioritize Your Relationship with Your Significant Other.  With any luck this person will be around long after your kids are out of the home.  Respite, date night, at least 5 minutes a day of time together where you DON'T talk about your kids. I try to give Hubby about 10 to 15 minutes when he first gets home to decompress (I used to give him the baby - dirty diaper first- the second he walked through the door) I also found it helped to have 10 minutes a day set aside to talk about the kids, and schedules and how your day went...
  • Room Time. No matter their age, our kids go to their room at 9pm. Sooner if their bedtime is earlier or they're in the FAIR Club. (Although I admit now that our kids are mostly young adults, we've let it move to 9:30 or 10 pm if we're watching a movie or something). This gives Hubby and I a chance to be childless for awhile (and watch something besides Disney on TV!).
  • USE RESPITE. Get out of the house and away from it all, take the family on vacation, go on a day trip, go to a support group or on a mom’s retreat. Acknowledge that your child may not be able to handle this outing, but rather than “punish” the whole family (and the child), find fun alternatives/ respite for your child and go anyway. Leave the child with family or friends (preferably someone who “gets it”) and go. Even knowing that your child (who might feel abandoned) is going to “punish” you later, remember that it’s worth it and your family needs time together without the stress and you need to recharge your batteries. We often found visits to psych hospitals (and residential treatment) offered time for the family to recover.
  • Spend Extra Time with Your Other Kids.  Go on "dates" with them.  Find times to chat.  Treat them to a little extra mommy time.  The squeaky wheel gets the oil and that means often the other kids can get shoved to the side.  Plus it helps you by getting some time with your child that is capable of “giving back” and having a relationship with you. I give my children permission to talk about their feelings about their siblings. They know it is completely OK to tell me they hate their sibling, as long as they don’t act on those feelings or share them with the sibling.
  • GET SUPPORT!!  Surround yourself with people who "get it."  Prioritize these relationships. Real life, on line, support groups, therapists, empathetic friends... just find them, and share!! Remember, "YOU ARE NOT ALONE!"
  • ASK FOR HELP!!!  and ACCEPT IT!!  When someone has a baby or has been hospitalized, people come over and help out.  They bring food for several days or even weeks.  They clean, go shopping, mow the yard, take care of the kids...  just because we haven't been to a hospital (or maybe we have, but not for a "socially acceptable" reason), doesn't mean that we aren't living like survivors of some catastrophic illness or major life event.  When people say, "Can I help?"  Say YES!  You need help.  You deserve help.  Ask for it.  Accept it.  Please!
  • Grieve. Give yourself time to grieve for losing the child you thought you were adopting. Grieve for not getting to be the parent you wanted to be. This is not the life you thought you were getting when you went through the adoption process. This is a loss. Acknowledge it. Get treatment for it. 
  • CHOOSE JOY - this is one of the hardest things I've ever done, and I wasn't ready for it until my "love tank" was a little fuller. Every day I try to focus on the positives.  It's hard as heck, but it is important.  I vent, but limited it to a maximum of 3 vents, even less if I can.  I needed lots of validation that what I was doing was the right thing.  Over time I began believing I was doing my best, and that helped me feel better about myself.  I look back at the Godincidences (like reviewing my blessings) that came out of what frequently seemed like tragedies at the time.  I try to focus on how many of these “tragedies” have made me a stronger, better person.  Most importantly I focus on the positives and Choose Joy, like the little old lady in the nursing home.
A 92-year-old, petite, poised and proud lady, who is fully dressed each morning by eight o'clock, with her hair fashionably coiffed and makeup perfectly applied, even though she is legally blind, moved to a nursing home today. Her husband of 70 years recently passed away, making the move necessary.
After many hours of waiting patiently in the lobby of the nursing home, she smiled sweetly when told her room was ready.
As she maneuvered her walker to the elevator, I provided a visual description of her tiny room, including the eyelet sheets that had been hung on her window. "I love it," she stated with the enthusiasm of an eight-year-old having just been presented with a new puppy. "Mrs. Jones, you haven't seen the room ... just wait." "That doesn't have anything to do with it," she replied.
"Happiness is something you decide on ahead of time. Whether I like my room or not doesn't depend on how the furniture is arranged... it's how I arrange my mind. I already decided to love it. It's a decision I make every morning when I wake up. I have a choice; I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do."
Each day is a gift, and as long as my eyes open I'll focus on the new day and all the happy memories I've stored away ... just for this time in my life. Old age is like a bank account ... you withdraw from what you've put in. So, my advice to you would be to deposit a lot of happiness in the bank account of memories.
Remember the five simple rules to be happy:
  1. Free your heart from hatred.
  2. Free your mind from worries.
  3. Live simply.
  4. Give more.
  5. Expect less.
Not easy, but Wonderful Advice....for all of us.
2. My Top 10 Thing I Couldn't Do This Without 
Things I Wish I Knew When Adopting An Older Child


There's more, but the most important thing is please be good to my friend!  She deserves it!

3. Understanding why they act the way they do.  It helps me a lot to know that it's not personal or malicious.  It helped to understand that my son is a scared little boy acting out of fear.  I learned about emotional age versus calendar age, and realized that like most children of trauma, my children were MUCH younger than the age of their bodies. I had to learn to parent based on their emotional age, which is pretty hard to do when they have adult size bodies and you have others telling you what they have a “right” to have... (ex. cell phone) whether or not they can actually handle it.

A lot of times with my daughter I repeat my mantra, "She's only 6.  She's only 6.  She's only 6!" (Chronologically she might be 17, but emotionally she's only 6).  The books Beyond Consequences, Katharine Leslie's books and seminars, Can This Child Be Saved, The Explosive Child, and Stop Walking on Egg Shells, really helped with this.

4. Lower my expectations. REALLY lower them.  Quit waiting for _______ to happen before I do _____________.   Stop expecting them to grow up and change, or be able to handle more than the most basic of tasks.  I found I was mad at my daughter for constantly demanding the privileges of a teen, but not being able to consistently do chores or other responsibilities.  I had to forgive her for not “acting her age,” and let her know that I would no longer be expecting her to meet typical teen responsibilities nor would I continuously justify why she doesn't get typical teen privileges to her or others. I explained to her that this meant she wouldn’t always be in trouble (for not meeting her responsibilities and doing what she was supposed to do), she’d have fewer (more “age-appropriate”) chores, and I wouldn’t always be mad at her.
This felt so wrong that I sought out the validation of others for a long time (making myself completely miserable), before I finally felt OK about this path.  Of course getting validation always feels awesome! I just have to continuously remind myself to ignore the critics.

5. Redefine Success and Accept What It Looks Like. Like most moms, success for my children meant college, finding a career they loved and that supported them in a lifestyle similar to what they have with us, finding true love, getting married, living near me (but not with me!), having children... preferably in this order!  Basically living "happily ever after." When I realized that this was not the path Bear and Kitty were on, or even capable of, I grieved. A lot. Then I took a deep breath and redefined success for each of my children individually.

  • For Bear, I kept struggling to give him the freedom everyone insisted he needed, since he was “going to be living on his own soon and needed to become independent.” I knew in my heart that he would most likely never be capable of living in an unstructured environment and having a long-term relationship with anyone (employers, friends, girlfriends...), but I kept letting him try (and fail), because everyone told me I "should." It made us all miserable.
    He finally found a structured environment that works for him (even though prison is not what I'd hoped for him), and he got there without violence.  He did graduate from high school, and the college degree everyone kept trying to push on him would not have been helpful to him with the lifestyle he needs to survive. 
  • Kitty may never be capable of living independently, but she is mostly happy living with us and likes having the option of living with her biofamily (even though she knows it is not good for her, and doesn't plan to move - except when she's upset). Whenever Kitty chooses to try independence again, as long as she has someone willing to help support her, she will probably be OK.
  • Bob is mostly on the path I dreamed of for all of my children. Ponito is struggling, but we are hoping to get him back on track. If/ when they step off of that track, that will be OK too.


6. Set limits.  Once I knew what I needed, I stopped giving so much that I had nothing left.  I’ve always been a rescuer, giving even beyond what I could afford to lose.   I had learned the hard way to stop doing it with other people (we called it "rescuing puppies" - people who seemed to be perpetual victims). I had felt though that these limits shouldn’t apply to children, especially MY children.   I soon found that the kids not only NEEDED the structure and boundaries I set by saying “No,” but they also did better with them – they felt safe which allowed them to trust enough to feel loved.  (I strongly recommend reading the book, Stop Walking on Eggshells!  The first half of the book helped me with empathy for them, by giving me a better understanding of why they act the way they do. The second half gives great practical advice in setting boundaries.

Saying "no" is not being negative.  Negative is saying "yes" to things that are destroying you. 


ADVOCATING

Presentation means a LOT. How you present yourself strongly effects how others respond to what you have to say.
People decide in seconds whether or not to take you seriously,” says Margaret A. Neale, Ph.D. So the next time you are faced with a pushy doctor or a IEP “team,” sit tall with your chest open and your shoulders back. Research shows it’ll give you confidence and may even alter your body’s chemistry in a way that helps you feel less stressed and more powerful, she says. ~ REDBOOK August 2015.
Physical appearance – First impression. I always dress fairly professionally. Not in a business suit, but usually a blazer (most of the time in hot pink or red!) over dark jeans or slacks. Something that makes me feel confident and attractive. I always wear makeup and do my hair.

Attitude – Stay calm and carry a big stick. I try to always stay calm, pleasant/friendly, professional, respectful, and show empathy for the stress the other person is dealing with (acknowledging that they have to balance the needs of many children and yes, this IEP meeting is running long). I also love to take my husband or a pushy advocate so they can get angry and demanding where needed (not that I can do it!) and I don’t lose my credibility as a competent, confident, rational professional – unfortunately that’s too easy to lose.

Helpful – I want teachers to know that I’m an involved parent (especially because my children tend to be prone to telling stories about how we abuse them and other reasons why they aren't able to do what's asked of them - ex. Bear told his teachers he was on a bender with his girlfriend in a city hours away for all of Spring Break. In addition to sending out the New School Year Letters at the beginning of the year, I also try to find time to do some volunteer work and get to know the teachers better.

DOCUMENT! DOCUMENT! DOCUMENT!

One thing I HIGHLY recommend to any parent dealing with children of trauma is to DOCUMENT, DOCUMENT, DOCUMENT!  You've heard me say it before... I'll say it again, and again.  It has helps protect us, get services for our children, and refresh memories of past issues so you can see progress and make sure chronic issues get addressed correctly.

Ex. At an IEP meeting in November, the IEP team said Bear was doing so well that they wanted to move him full time from his structured, supportive special school to his home school (he'd been splitting his time between the two). It felt so wrong in every way, but I couldn't think of a reason why not! I took a minute to glance at my notes, and realized that only a couple of months before, Bear threatened a special ed student in the middle of class, took the girl's car keys, loaded her car with his friends and drove to a local fast food place, where he accidentally ran into their landscaping and wrecked the car (consequences for skipping class, driving without a license or permit, threatening a student, disrupting class, stealing and wrecking a car... none). The crazy thing was we ALL had forgotten this major incident!! (I think I was repressing it.)

When dealing with police, CPS, getting your child services and treatment, trying to get people to understand and believe you... it's amazing what they'll believe when it's in writing, versus hearing it from the parent - even if you're totally calm, logical, and professional when you speak.

Written Communication

Letter to a Stranger - "When you write letters/emails, these letters will usually be read by strangers. Many important decisions about your child are made by strangers. What impression will your letter make on a stranger? Will the stranger see you as an angry, negative complainer? Or will the stranger see you as a rational, thoughtful parent who is expressing valid concerns? When you write letters, keep this "stranger" in your mind’s eye."

Document Conversations:

Especially when dealing with bureaucracy (like insurance or school!), try to keep as much communication as possible in writing (e-mails, notes, letters...).  If the person insists on phone calls and face to face meetings, take detailed notes and IMMEDIATELY type up a transcript afterwards with as MUCH detail as possible. One of the main things to remember about documentation is to do it as SOON as possible after an incident.  Adrenaline and time really alter memories quickly.

Include names, titles, agencies and affiliations, DATES and TIMES!  When you need documentation you can use these transcripts and they are MUCH more admissible then saying, "Well Ms. So and So said he was doing this a few weeks ago."  Once again, people believe what they see in writing, and it gives more credibility and authority to your statement.

Instead of: “I talked to someone about this a few days ago and she said… (something vague in support of what you want).

Notes: “21st of March at 2:15pm, I spoke on the phone to Ms. Smith, the head of the ARD Committee. We discussed Johnnie’s behavior during transitions times. Specifically, pushing Susie in the hall when she bumped in to him (3/19 at 1pm on the way to Music – observed by Mr. X), when lining up to go to recess running away from the teacher and found 20 minutes under Mr. E’s desk (3/17 from 2:20-2:40 – reported to Mom with a note in his homework folder on 3/18). Ms. Smith suggested that an option was to transfer Johnnie to Ms. Jones’ classroom 5 minutes before the bell rings so to reduce Johnnie’s stress during transfer times. Since many of these incidents were later in the afternoon, we discussed sending a high protein snack for Johnnie that could be given in the nurse’s office). We agreed that we would brainstorm other options and discuss this at the next ARD. Ms. Smith will make requests to Johnnie’s homeroom teacher, Mr. X the behavior aide and the assistant principal to bring options to the next ARD, which is on April 1st.”

Confirmation in Writing: Then I would email a summary to Ms. Smith (and copy everyone else that needs to know). “Dear Ms. Smith, I just wanted to confirm our discussion on 3/21/15 regarding Johnnie’s behavior during transitions. As agreed, you will contact Johnnie’s homeroom teacher, behavior aide and the AP regarding options that will help Johnnie access the least restrictive environment that meets his needs to successfully access his education. I look forward to receiving these options for my review before our next ARD scheduled on April 4th, so that we can discuss them and choose the best solutions for helping Johnnie be successful…”

Incident Report: Documentation protects you, because many of our children will make false allegations and people (even ourselves!) forget or misplace information about incidents. This information may be needed to get the services our child needs.

To protect all involved, I recommend writing an "Incident Report" and keeping it in a log, sending it in an e-mail to the child's therapist or whomever might keep track of the info, and/ or add it to the child's timeline:

  • Antecedent - what was going on before the behavior or possible/probable triggers.
  • De-escalation - what we said/ did to try to prevent the event (if we had time) - calming techniques
  • Behavior/ Event - with as much detail as possible
  • Intervention - what we we did during and immediately after the event - how we tried to calm the child, confrontation, redirection, distraction, sitting with them, time-ins, holding, rocking.., 
  • Follow-up - how you processed what happened with the child.  Injuries, damage, repairs needed/ made (emotionally and physically)... What consequences were given (if any). Agencies contacted. Reports filed.


Get ORGANIZED and keep EVERYTHING! E-mails, school behavior reports, transcripts, psych evals, documents. Get letters from his doctors, caregivers, therapists... Get these Organized and keep them updated (you'd be amazed how many times the school will say, "Well we don't have access to, or record of, that, let's wait until it can be found..." When you open up your 3 ring binder and pull out a copy of your child's behavior reports, that medical report (that you had them put in to their records at his last IEP meeting), your list of topics you want discussed at the meeting (I usually send out a copy of this via email before the meeting and ask them to make a copy for everyone!)... it keeps them from slowing down the process.

3" 3 ring binder - I take this everywhere - school IEP meetings, doctor/psychiatrist appointments, anytime I'm going to have to fill out a ton of paperwork requesting my child’s history, dates and dosages.  I tend to keep these binders in my car in their own tote (more than 1 is too heavy!).

Primarily I use a 3" 3 ring binder with front and back pockets and a clear covering that I can drop things into. It's divided into sections with tabs. I add to the sections by putting the most recent information in the front of each section.

SPINE- Label with the child's name - since I've got 2 kids), but I also made sure they were different colors so I could recognize a child's quickly.

FRONT Drop in business cards so they don't get lost.

BACK Add a photo of the child. I've found some people in the IEP meeting forget we're talking about MY child, so even though my child is usually present I find this important. I have a beautiful crayon sketch done by my mom of my daughter. For my son I have a photo of him.

INSIDE (I generally try to keep things in chronological order - most recent items in front - unless it's a summary or needs to be in the front because we use it a lot)
  • Front Pocket - I keep a copy of the current IEP since it's too big to fit in the binder sections.
  • In Front. Current Meds and Diagnoses page. I keep this one-page document updated and with me at all times.  I also keep a copy in my purse.  This summary has the child’s name, age, grade and where they go to school, IQ (if significant), current meds and dosages, current providers’ names and contact info (doc, therapist, pdoc…) and a list of diagnoses (with DSM V codes if possible) including, if needed, a brief summary as to how that looks in my child (ex. 294.9    Cognitive Disorder NOS (deficits in processing speed, working memory, executive functioning, and visual memory) - Cerebral Dysrhythmia (TBI) – right temporal lobe. - which controls memory, hearing, understanding language (receptive language), organization, and sequencing.

    It's especially useful to have the Meds and Diagnoses page on hand when I need to fill out a health form for school, admittance forms for a psych hospital or residential treatment center, new therapist or medical practitioner forms, to give to police officers and to child protective service workers (when we're reported for child abuse by a child who makes false allegations).

    Plus, I have some blank ruled paper for notes.
  • TAB 1. Medical - (this includes copies of discharge paperwork from psychiatric hospitalizations), a current med list, a med list with all the meds they've ever been on (including when they took it and why it was stopped - if I know), immunizations, hearing and vision, and reports in chronological order of any significant medical issues (surgeries, test results and reports...), most recent well check summary…
  • TAB 2. Psych evals - (this includes the school version of a psych eval - called an FIE at our school). I like to use big paperclips to keep each report together rather than staples so they can be copied easily and so I can flip through quickly.
  • TAB 3. School - this has copies of important e-mails, IEP meeting invitations, printed out attendance, behavior reports, grades... I keep the most recent IEP in a pocket in the front of the binder because it's WAAAYYYY too big to fit in the binder. I only have room to keep a "summary" of important stuff in there (she's had 6 IEP meetings this year), so older stuff from past school years usually gets filed away unless it's really significant. A copy of the Procedural Safeguards (just so they don’t have an excuse to try to give me yet another one).
  • TAB 4. Legal - this is different per child. For my daughter we filed due process against the school (kind of like a lawsuit) so I keep this information here. Including recommendations of her therapists and psychiatrists regarding her school placement. For my son, it's more about his involvement in the judicial system. This would also be where we put Power of Attorneys, SSI paperwork, pretty much anything legal.
  • TAB 5. Adoption - just some legal documents needed sometimes because our kids were teens when we finalized, their names are different on documents from before their adoption (my daughter's first AND last name changed from her birth name).
  • TAB 5. Work - Now that my children have started working, we’ve replaced the adoption stuff and now have job search info, resumes, DARS information, pay stubs, Write Ups…
  • Back Pocket - odds and ends.
IN THE TOTE - A separate file folder for "current stuff” -  Stuff I haven't had time to hole punch, stuff that doesn't actually belong in the binders, info on programs we're considering, a calendar, "to do" stuff... whatever. A pencil bag with – pens, fidgets (for the kids), random stuff. A cheap hole punch. A photo “brag book.” A book for me to read (since I don’t have a smart phone!).




ADVOCATING FOR YOUR CHILD AT SCHOOL

The most important thing I've learned is that my children need relationships and emotional healing WAAAYYYY more than they need an education.  Think about it, do you really want to raise a well-educated psychopath?

What Happens in School Stays in School. I'm a firm believer that what happens in school stays in school.  We have enough problems with relationships at our house; I don't need to fight the school's battles as well.  Advocate to make sure they get what they needed, but leave the rest to the school.  Family relationships are way more important, and you're not able to work on that if you're fighting about school.

Homework is not YOUR problem.  If I force my kids to do their homework then in their mind it becomes MY problem (meaning no longer theirs!).  Also, the school doesn't get an accurate picture of my child's issues (Like most kids of trauma, my children have severe executive functioning and memory issues, which means they canNOT get/stay organized. A lot of times my child understands the assignment at school, but has forgotten it by the time they get home, or they can do something laid out very concretely, but in the homework they are supposed to apply the knowledge they learned - which process to use - which they just can't do!). My son would act out to hide the fact that he couldn't, or didn't think he could, do his homework.

 I need the school to grasp and acknowledge my child's academic issues, and they won't get that if I walk my child through the homework. I do give my child adequate time to do homework and offer support and help (if they ask for it and remain respectful), but I will tell my child to put it down and walk away if it's obviously triggering him/her.  Maybe I encourage them to come back later.  Maybe not.  It depends on what's best for the emotional health of the family as a whole.

Key Phrases to Help Your Child:

  • "My child has a right to a Free and Appropriate Public Education (FAPE), this (issue) is preventing him from being able to access his/her education." 
  • "These behaviors are caused by my child's Disability. In accordance with the Americans with Disabilities Act (ADA), My child cannot be discriminated against/ punished/ reprimanded/ denied access to his FAPE for symptoms related to his Disability."
  • "My child has a right to be in the Least Restrictive Environment (LRE). The LRE for MY child to be able to learn and receive an education is in a smaller classroom with more INDIVIDUAL (one on one) attention. My child cannot learn in a large, chaotic environment like a general ed classroom therefore that is a MORE restrictive environment for my child and as such not APPROPRIATE."  

Wrightslaw - go immediately to http://www.wrightslaw.com/ and become familiar with your child's rights!!

New School Year Letter – This is a ONE-PAGE letter that I send out every school year to teachers and people who will be working with my child.  This is a brief summary of my child, since most teachers don't have time to read a child's whole file.  It gives tips on what works and what doesn't with my child, diagnoses and what they mean. Most importantly, it gives them my contact information and lets them know that I am an involved parent. Hopefully it will keep the teacher from making assumptions about our family, believing the crazy lies my child tells (hopefully they’ll be more likely to verify with me before they call CPS), and be thoughtful about the assignments they give (send baby pictures, talk to an older family member about your life history, family tree… write a eulogy for Tweetie - for my child who just got out of the psych hospital for suicidal ideation, memorize a monologue called Men are Slime - for my child with men issues, read the Outsiders and watch the movie - so many triggers I can’t mention them all!)….

ADVOCATING FOR YOUR "ADULT" CHILD

Finding Services - Many high schools and other organizations offer Transition Services/Trainings, including things like Transition Fairs to parents of special education students and children with special needs. Check with your school's special education department (many have an organization for parents), check with other local and government organizations, google it... It's different for every state.
Transition Inventory - This is specifically for the state of Texas, but some of the resources are national.
Getting SSI/ Medicaid for Your Adult Child