Presentation means a LOT. How you present yourself strongly affects 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. ~ REDBOOK August 2015.Physical appearance
– Good impressions are important. I always dress fairly professionally. Not necessarily 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.
– 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 have to lose my credibility as a competent, confident, rational professional – (unfortunately, that’s very easy to lose).
- 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 for all of Spring Break with his girlfriend in a city hours away. 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.
- We need people on our (and our child's side). If we want them to do something for us we need to be persuasive
- Know exactly what you want, and keep meetings/ discussions on topic and focused on that goal.
- Leave out everything else (KISS - Keep It Short and Simple)
- Think about it from your audience's perspective.
- What are their goals and motivations? (Getting home on time, keeping students safe, liability/ protecting the school, protecting their image of themself as a good person...
- Say it in a way that will speak to your readers.
- Look for ways to make them want to do what you want them to do.
- Make it clear and easy to do what you want them to do.
- Use words that inspire enthusiasm or make them feel better about themselves.
"Forgive me for being blunt, but at the end of Bear's junior year in high school as I look at Bear’s declining grades and spotty attendance over the last semester, send yet another e-mail, leave yet another unreturned message with the Associate Principal and [BEHAVIOR PROGRAM] office, talk to yet another counselor or [BEHAVIOR PROGRAM] Aide, talk to yet another teacher about major projects Bear hasn’t even worked on… knowing that none of my repeated requests for assistance with Bear’s steadily declining behavior are being addressed, especially now that there’s little more than a week of school left… I’m feeling a little FRUSTRATED, to say the least. I am therefore officially requesting an immediate IEP meeting."
"I am concerned that Bear is a danger to himself and others. I am officially requesting an IEP meeting."
"Kitty was sick a lot during the last 6 weeks. She's missing assignments and not prepared for the test tomorrow. You need to simplify or drop the missing assignments. Obviously, she can't take the test tomorrow. What are you going to do to fix this?"
"I'm hoping you can help Kitty. She's missed a lot of classes due to serious illnesses. She's working hard to catch-up in your class (and all others) but unfortunately will not be ready for the test tomorrow. She plans to attend your scheduled tutorial hours after school. Do you have any additional ideas/ suggestions on how we can handle this?
As parents of special needs kids, we write all the time. Quick emails, formal documentation, requests/ demands for services or resources... how many times do you feel like they just stuck your document in the round file?
This post has a lot of info on how to get your document read -
This post has a lot of info on how to get your document read -
Documenting can help protect you from false allegations, get services for your child, and make sure chronic issues get addressed.
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 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 single reason why not!
Luckily, 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 in front of everyone, 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.)
Put It In Writing!
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
- even if they know you wrote it
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."
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 afterward 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 whoever 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 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.
Documentation Goes Both Ways!
Use their documentation to hold them accountable and get services. I often took psych reports with recommendations to places like my child's school and demand that they put these accommodations into place or our insurance company and demand they pay for programs/ therapy that met these goals (such as Hippotherapy or an expensive RTC that specialized in DBT therapy).
I know that most of the psych eval recommendations were "cut and paste" crap, but I could still use them to my advantage.
- A two-prong treatment approach that includes both individual and family therapy/ parent training is strongly recommended. Treatment will be best geared to concrete, face-valid, short term goals establishing control and adaptive coping behaviors. At this time, it is important that therapeutic work address establishing a solid emotional vocabulary to help him directly express his feelings in an appropriate manner, developing emotional awareness...... blah, blah, blah...
I might use this recommendation to get:
- DBT therapy versus whatever random talk therapy intern assigned to my child, because it specifically works on developing emotional awareness and vocabulary.
- Forcing the school, adoption agency, or insurance company to find and fund an alternate placement for my child that can better help my child get the help he/ she needs such as finding an Alternate Placement (Alternate Placement and Crisis Plans) or an RTC (Finding and Funding an RTC).
- Even though this recommendation is talking more about therapeutic goals, I would probably use it to get IEP accommodations in the classroom that are focused on concrete, short-term (chunking) goals. Meaning, my child won't be handed a long-term project at the beginning of the year and expected to be able to complete it themselves. Instead, the assignment would be broken into steps and each step would have its own accountability.
- I would also use it to get my child more emotional accommodations at school. Such as a quantifiable way for my daughter to let the school know she is experiencing anxiety or is feeling suicidal or like she wants to self-harm. Anxiety Scale. Crisis Plan.
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 to be 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 here 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.
- NOTE: 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).
- 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…
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!).
- Back Pocket - odds and ends.
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 Letters
I write New School Year Letters at the beginning of the school year to alert the teachers and other people who deal with my children to the fact that I'm a concerned, loving, involved parent so if my children are doing something that seems "off" or inappropriate then it's probably related to their issues and not my parenting. ;)
These are ONE-PAGE letters 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, the letter 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 (asking us to 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!)….
New School Year/ Changing Schools
I've gone through this a couple of times. My best suggestion is to lay the cards on the table at the beginning (with as much in writing as possible because people believe what they read over what they hear). Be as clinical and matter-of-fact as possible. Tons of documentation to back you up but presented as briefly as possible. More of an outline so they can assimilate it quickly (they won't read more than a page at most) but making it obvious that there is documentation to back you up.
You want them to see you as a professional and an ally. You need them to come to you if something seems off rather than believe the children's stories.
If your children don't already have IEPs and you think they qualify then I would get the ball rolling on getting the school's testing done immediately. That helps too because if they understand your children aren't the average neurotypical students then they're less likely to believe any tall tales.
Above all, keep up the documentation on your end because with our kids it's usually not a matter of "if" it's a matter of "when" you'll be reported to DCFS.
Document! Document!! Document!!!
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