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, 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

Applying for 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.

Money is paid starting from the day 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.

It is suggested that you open an account prior to receiving SSI.  The name on the account can be "Your Name" as Representative Payee for "Your Child'’s Name." You can open it with the smallest amount the bank will allow. Once you open the account, do not make any large deposits into it, keep it open for when the first payment is received, at that time you can then contact Social Security to make automatic deposits into the account.

Kitty's SSI payment will be automatically deposited into a joint account to which she and I both have access.  Currently the plan is that I will transfer all but 100.00 to my account noting that the transfer of funds is for 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 continue to receive $20 a week, until she shows she's ready to handle more.  One way for her to demonstrate that will be to show that she can save money for something.

Tuesday, September 23, 2014

Secondary Traumatization, STS, and Secondary PTSD

Secondary Traumatization

Mental health care professionals specializing in the treatment of trauma hear tales of extreme human suffering and observe the emotions of fear, helplessness and horror registered by survivors on a consistent basis. Recent research demonstrates that these occupational duties may cause psychological symptoms in the practitioner who bears witness to the survivors' account of trauma.

Primary posttraumatic stress disorder may be diagnosed in an individual who experienced, witnessed or was confronted with a traumatic event and responded with intense fear, helplessness or horror. Intentional traumas (e.g., combat, sexual assault, terrorism and mass violence), as well as unintentional traumas (e.g., natural disasters, accidents), may cause this pervasive psychiatric condition.

Secondary trauma is defined as indirect exposure to trauma through a firsthand account or narrative of a traumatic event. The vivid recounting of trauma by the survivor and the clinician's subsequent cognitive or emotional representation of that event may result in a set of symptoms and reactions that parallel PTSD (e.g., re-experiencing, avoidance and hyperarousal). Secondary traumatization is also referred to as compassion fatigue (Figley, 1995) and vicarious traumatization (Pearlman and Saakvitne, 1995).

Secondary trauma is an understudied and controversial clinical phenomenon.

- See more at:

Secondary traumatic stress (STS)

For therapists, child welfare workers, case managers, and other helping professionals involved in the care of traumatized children and their families, the essential act of listening to trauma stories may take an emotional toll that compromises professional functioning and diminishes quality of life. Individual and supervisory awareness of the impact of this indirect trauma exposure—referred to as secondary traumatic stress (STS)—is a basic part of protecting the health of the worker and ensuring that children consistently receive the best possible care from those who are committed to helping them.


This information was adapted from this site.

Secondary PTSD is not a disorder which is recognized by the Diagnostic and Statistical Manual of Mental Disorders (as of the fourth edition).  However, if you lived with someone who suffers from PTSD, you may notice yourself beginning to "mirror" some of their behaviors.  This transformation is called Secondary Post Traumatic Stress Disorder.

The Many Faces of Secondary PTSD

The signs, symptoms, and effects of Secondary PTSD are just as varied as the ones exhibited by those with "primary" PTSD.  Basically, when you're living with someone who has Post Traumatic Stress Disorder, you
become his (or her) caretaker.  You slip into a role, without even noticing it, that has you constantly watching for people or circumstances that might "set him off."  You're trying to make sure everything stays in line - that nothing aggravates or upsets him or her - that everything is "perfect."  On a much too frequent basis, and despite your best efforts, you find you're still getting screamed at and berated by the person you're trying to help.

The person with PTSD is not emotionally "there" for you.  When you're upset or happy, angry or sad, you have to deal with your emotions on your own.  You begin to feel ignored and unloved and start "protecting" yourself by treating others - especially the person with PTSD - the same way.

You're also probably handling all household chores, childcare, financial management, etc.  You probably get no help (or very little) from your spouse or children.  You're the cook, chauffeur, secretary, accountant, yard guy, child care provider, laundry service, etc., etc., etc.  Everything in your family feels like it's up to you.  It is a 24x7 job at which you constantly fail.  It's not humanly possible to do everything - or to prevent PTSD from creeping in.

This cycle takes its toll on many spouses.  You lose yourself.  It's impossible to tiptoe around the person with PTSD, day in and day out, while taking care of all of life's other duties, without feeling the strain.   And that strain soon transforms into... ta da... Secondary PTSD.

Secondary PTSD may make you feel overly angry, depressed, exhausted (but, alas, unable to sleep), overwhelmed, and just plain unhappy with the world around  you.  I can honestly say there have been times when I found the idea of folding a load of laundry absolutely impossible.  I felt like I could not do anything right.  I cried a lot and was really, REALLY pissed at the world.
- See more at:

Wednesday, September 3, 2014

Dear Biofamily,

Kitty announced tonight that after an argument with Hubby on Sunday, she has decided to move back to Nebraska.  Her grandparents are supposed to be picking her up on Saturday.

Kitty went to live with biomom and biosisters in Nebraska on July 1.  She came back to Texas on August 1.  She freely admits that her memory of whichever place she's not currently living, becomes more of a fantasy than a reality.  For her, the grass is always greener on the other side of the fence - whatever side of the fence she's on.  She's already left once with no idea how she was going to handle things (no meds, no money, no practical skills...).  She literally could die if she goes off her medications cold turkey, but that was the situation she'd put herself in, and we couldn't help.

So this time I'm sending out an appeal to biofamily to please, please think of Kitty's future (which she's incapable of doing for herself right now) and encourage her to stay in Texas. Just for one year to finish beauty school, which will give her a skill she can take anywhere.  For her sake.

I'm sincerely hoping you will help me.  I need to talk to you about how Kitty's decision to move to Nebraska right now will really damage her future (not to mention her physical and mental health).  
I'll understand if she still wants to go after she has a chance to calm down, but right now she needs to stay in Texas to get on SSI and Medicaid (her medications cost almost $2000 a month if she doesn't have insurance, plus she needs to see a psychiatrist every 6-8 weeks - more if she's unstable).  Our insurance will no longer cover her if she moves out, and even with our insurance the copays are almost $200 a month.  
There's an agency here that will help her find a job that will work around her intellectual disabilities and her mental health issues as well.  They will also pay for community college and the beauty school she wants to go to.  If she moves, then she will have to pay out of state tuition and will likely not get the accommodations she needs.
I'm asking you to please do what's best for Kitty and not come get her until she's had a chance to at least try school.  I want her to have the best possible start in life and she can't get that if she keeps running away and has other people supporting her for the rest of her life.  I know you want what's best for her too.  Please, please encourage her to make the tough choice to stay and work through this.
Thank you,

UPDATE:  I was able to get hold of Biograndma - who was the one who planned to drive cross company to get Kitty.  Unlike Biomom, Biograndma doesn't read this blog.  She had no knowledge of Kitty's issues, and how much Kitty would be losing if she leaves right now.  It took a lot of long conversations (and FB messaging), but Biograndma finally agreed that it wasn't in Kitty's best interest to leave right now.  After all of that, she admitted that she didn't have the money to make the drive anyway! I can't believe how close we came to Kitty blowing the meeting she had on Friday, for something that wasn't going to happen.

I did tell Kitty that I was going to do everything I could to keep her from leaving right now.  I feel like she felt abandoned when we didn't stop her last time.  This time I told her that I thought it was a really bad choice because of the timing (which I told her last time too), and that I was saying, "NO."  Since I'm not a cute boy, she refused.

When Biograndma told Kitty she wasn't coming, Kitty of course blamed me.  She's always mad at me though, except when she's not.  *sigh*

She's actually had a decent few days -- once we got past me enforcing her not sleeping all day so she'll be ready for school when it starts. For the last week, she's been sleeping 24 hours and staying awake 24 hours. She's gotten herself totally dysregulated by not taking her meds regularly, drinking, and totally mucking up her sleep schedule.  She's depressed, moody, and anxious.  We're trying to get her next psychiatric appointment moved up so we can get started on changing her meds if that's what's needed.

Monday, July 28, 2014

Difference between a 504 and an IEP

Most of the information you've received from the school about Section 504 and IDEA is simply not accurate. To be an effective advocate for your child, you need to know the difference between Section 504 and the IDEA. 

Written by NCLD Editorial Team

As a parent, you are your child's greatest advocate, supporter, and cheerleader. By becoming knowledgeable regarding educational laws as well as services and programs available within your community, you can ensure that your child receives a Free and Appropriate Public Education (FAPE). 

There are two primary laws that cover your child's rights to a public education:
  • Individuals with Disability Education Improvement Act (IDEA)
  • Section 504 of the Rehabilitation Act of 1973
Understanding how Section 504 and IDEA work with each other and complement each other allows you as the parent to better assist your child's educational team in ensuring your child's right to a Free and Appropriate Education (FAPE) is provided allowing for maximum educational success.

504 and IDEA Comparison Chart
of the 
Section 504
Is a federal statute whose purpose is to ensure a free and appropriate education services for children with disabilities who fall within one of the specific disability categories as defined by the law.
Is a broad civil rights law which protects the rights of individuals with disabilities in any agency, school or institution receiving federal funds to provide persons with disabilities to the greatest extent possible, an opportunity to fully participate with their peers.
Who Is Protected
Covers eligible students ages 3-21 whose disability adversely affects the child's educational performance and/or ability to benefit from general education.
Covers all persons with a disability from discrimination in educational settings based solely on their disability.

Section 504 defines a person with a disability as:
·         Having a physical or mental impairment which limits one or more major life activity;
·         Have a record of such an impairment; or
·         Are regarded as having an impairment.
Provides individual supplemental educational services and supports in addition to what is provided to students in the general curriculum to ensure that the child has access to and benefits from the general curriculum. This is provided free of charge to the parent.
Requires schools to eliminate barriers that would prevent the student from participating fully in the programs and services offered in the general curriculum.
Requirements for Delivering Services
Requires a written Individualized Education Plan (IEP) documentation with specific content addressing the disability directly and specifying educational services to be delivered, mandating transition planning for students 16 and over, as well as a Behavior Intervention Plan (BIP) for any child with a disability that has a behavioral issue.

"Appropriate Education" is defined as a program reasonably calculated to provide "educational benefit" to the student. Related services are provided as required for the student to benefit from the educational process and are aligned with specially designed instruction (e.g., counseling, speech, transportation, occupational and physical therapy, etc.)
Does not require a written IEP but does require a documented plan. "Appropriate Education" means comparable to the one provided to general education students.

Section 504 requires that reasonable accommodations be made for the child with a disability. Requires the school to provide reasonable accommodations, supports and auxiliary aides to allow the child to participate in the general curriculum.
Provides additional funding to states for eligible students
Does not provide additional funds.

Additionally, IDEA funds may not be used to serve children found eligible under section 504 only.
Evaluation Procedures
A full Multi-Factored Evaluation (MFE) is required, using a variety of assessment tools and strategies to gather relevant functional and developmental information, including information provided by the parent that may assist the team in determining whether the child has a disability and how it affects the child's educational program.

Multiple assessment tools must be used to assess the child in all areas of the suspected disability.

Written consent is necessary by parent or guardian before an initial evaluation is conducted

Requires a reevaluation every three years by IEP team to determine if services are still needed to address student disability unless the parent and other members of the IEP team agree it is not necessary.

Reevaluation is not required before a change of placement.
Evaluation draws on information from a variety of sources in the area of concern. A group decision is made with persons knowledgeable about the student, evaluation data, and available educational placement options. Written consent is not necessary before completing an evaluation; however, notice must be provided to parent or guardian.

Requires yearly reevaluations or periodic review.
Independent Evaluation
Allows parents to request an Independent Educational Evaluation (IEE) at the school district's expense if parent/guardian disagrees with the evaluation obtained by the school district. The Independent Evaluator must meet the same criteria as the district requires for their employees and must be approved by all parties.
Does not allow independent evaluations at the district's expense or the ability to request an independent educational evaluation.
Procedural Safeguards
Requires written notice to parent/guardian prior to identification, evaluation and/or placement of child.

Changes of services or placement must have written notice before any change can take place. Requires due process rights to be followed at all times and manifestation determination hearing for discipline procedures.

For any child with behavioral concerns a Functional Behavior Assessment (FBA) must be completed and a Behavior Intervention Plan (BIP) written to assist student in learning appropriate behaviors and providing supports to enable student to be successful in their learning community.
Does not require written notice.

Requires notice before a "significant change" in placement — requires due process rights if referred for formal evaluation under IDEA, and the team determines not to evaluate.
Placement Decisions
Requires district and schools to use information from a variety of sources. Consider all documented information and use a team approach to make eligibility decisions. Team members are identified under IDEA and must be knowledgeable about the child, evaluation data, and the continuum of placements and services available.

Requires that student receives a free and appropriate education with his/her non-disabled peers in the least restricted environment.

IEP meeting is required before any change in placement or services is made. Students are eligible for a full continuum of placement options including regular education with related services as needed.
Requires district and schools to use information from a variety of sources. Consider all documented information. Use a team approach to make eligibility decisions, with team members being knowledgeable about the child, evaluation data, and the continuum of placements and services available.

The student must receive a free and appropriate education with his/her non-disabled peers.

Meeting is not required for a change of placement. Students are served in general education with or without modification. Possible accommodations under a 504 plan could be:
·         Structured learning environment
·         Repeated or simplified instructions
·         Behavior management or intervention strategies
·         Modified testing procedures- small group; oral testing; extended time; test read to student.
·         Tape recorders, spell checkers, calculators, computers, word processor, etc.
·         Modified or adjusted homework, workbooks, second set of textbooks.
·         Textbooks on tape
·         etc. (many accommodations and modifications used on an IEP can be included in a 504 accommodation plan)
Due Process
Requires district to provide resolution sessions and due process hearings for parents/guardians who disagree with identification, evaluation, implementation of IEP or students Least Restricted Environment (LRE) placement.
Requires districts to provide a grievance procedure for parents, and students who disagree with identification, evaluation, implementation of IEP or students Least Restricted Environment (LRE) placement. A grievance procedure must be provided to parents and employees to follow and a 504 coordinator identified in the district to assist individuals as needed.

Due process hearing not required before Office of Civil Rights (OCR) involvement or court action unless student is also covered by IDEA.

Compensatory damages possible.
by Pat Howey

Are you confused about the differences between Section 504 and IDEA? You aren't alone. It's important for the parent to understand that their child has different rights under Section 504 and IDEA.

Here are a few important differences between these two laws.
  1. Section 504 does not require written plans. 
  2. Parents have few rights under Section 504.
  3. The school does not have to invite the parent to the meeting when the 504 plan is developed. The school must notify the parent that a 504 plan was developed.
  4. Section 504 has fewer procedural safeguards to protect the parent and child.
  5. What appears to be discrimination may really not be discrimination.
  6. Section 504 protections follows the child after s/he leaves the public school system. IDEA does not.

504 Plan: A Consolation Prize
Many schools offer Section 504 plans instead of IEPs because Section 504 requires less of them. Unlike the IDEA, Section 504 does not create a right to a free appropriate education from which the child receives educational benefit. Section 504 does not require schools to invite parents to the meeting where the 504 Plan is developed.
If you are like most parents, you do not need an attorney. The key to resolving special disputes is preparation, preparation and more preparation. As a parent, your goals are to prevent problems when possible and to minimize the seriousness of those problems you cannot prevent.

Control Your Emotions

Keep your emotions under control! Do not obsess about unfairness. If you allow yourself to obsess about unfairness or revenge, you will make mistakes.

Be careful about revealing your feelings to school personnel. If you share your feelings, the school will perceive you as emotional, vulnerable and possibly as unstable. If you discuss your personal problems, you are likely to appear to be more problem-ridden than you are.

Spend your time and energy thinking, planning, and preparing. When you prepare, it is more difficult to make mistakes. Put your emotions in your backpack. Use your emotions as a source of energy to keep you moving, step-by-step, to high ground.

Begin a Program of Self-Study

You need to learn about the law, your child’s disability, how your child learns, and how your child should be taught. Where do you begin? Join one or two special education organizations for one year. Immerse yourself in information about disabilities, educational remediation techniques, legal rights and responsibilities, and tactics and strategies.

Join a Support or Study Group

Get help from other parents. Look for a support group or study group in your community. Members of the group will provide information, recommend experts, offer support, and alleviate the sinking feeling that you are fighting this battle alone.

To find a group that is right for you, read Strategies to Find a Support or Study group.

Learn About Your Legal Rights and Responsibilities

You need to learn about your legal rights and responsibilities. Read and re-read the Individuals with Disabilities Education Act (IDEA). Use a highlighter. Attach sticky notes on those pages that relate to your child’s situation.

There are dozens of good legal research sites on the Internet.
  • FindLaw is an encyclopedic law site with resources for legal professionals, students, businesses, and the public.
  • The Legal Information Institute (LII) from the Cornell Law School includes decisions by topic, journal articles, other resources.
  • Wrightslaw is a special education law and advocacy site.

Learn About Special Education

You need accurate information about your child’s disability, how the disability affects your child, and about appropriate educational and remediation techniques. The groups listed in the Directory of Disabilities Organizations and Information Groups are an invaluable source of information.

For the websites of national disabilities organizations and information groups, go to

The National Dissemination Center for Children with Disabilities (NICHCY) provides information about disabilities; programs and services; IDEA, the nation's special education law; No Child Left Behind, the nation's general education law; and research-based information on effective practices for children with disabilities.

Get Legal and Advocacy Information From Your State

Contact the Special Education Division of your State Department of Education. Ask for a copy of your state special education laws, regulations, and guidelines. Request all material about special education, IEPs, and Section 504 programs.

To find your State’s website, check the Directory of State Departments of Education.

Your state has an independently operated and funded Protection and Advocacy Office. Their mission is to provide legal and advocacy services to people with disabilities. Some chapters offer special education training programs. Request all publications about special education, IEPs, and parent rights and responsibilities from your state P & A office.

For a list of Protection and Advocacy agencies by state, go to the website for the National Disability Rights Network.

Contact your state Parent Information and Training Center. These centers help families obtain appropriate special education services for their children with disabilities, provide training and information to parents and professionals, help resolve family-school problems, and connect children with disabilities with community resources.

For a list of state Parent Information and Training Centers with contact information, check the Directory of Parent Training Centers:

Request Your Child’s Records

Request a complete copy of your child’s cumulative and confidential files from your child’s school and from the administrative office where the special education department is located. Request a copy of your child’s records from all agencies and individuals that may have information about your child.

Get a Comprehensive Evaluation

Get a comprehensive evaluation of your child from an independent expert in the private sector. The purpose of this evaluation is to identify your child’s problems and develop a plan to address these problems. Before you can make wise decisions about your child’s special education program, you need accurate diagnostic information about the child’s disability, strengths, weaknesses, and needs

At this point, many parents say . . .

“But the school is supposed to test my child . . .”

“I want an independent evaluation and I want them to pay for it!”

If the school arranges and pays for an independent evaluation, you should expect this evaluation to support the school’s position. You need accurate diagnostic information about your child’s problems from an evaluator who is independent of the school district. With this information, you will be able to develop solutions to problems.

You are likely to have to pay for this evaluation. View the evaluation as an investment in your child’s future. A comprehensive evaluation will give you a roadmap for the future.

Tip: Many universities have child development clinics and education and psychology departments that will evaluate your child at low or no cost.

Know your rights!!  

"My child is in 8th grade. She has a 504 plan. On recent progress reports, she received two F's. When I met with school personnel to request that she receive more help, the principal said, 'She has to fail on her report card before we can test her.'"
"My daughter was diagnosed with bipolar disorder. Before she was diagnosed, she was in gifted and talented classes. Her doctors say she should qualify for an IEP under the 'Other health impairment' category, but the school disagrees." 
"The school says she must have a discrepancy between ability and achievement to have an IEP but they will not evaluate her to determine if she has a discrepancy between ability and achievement."
To make sure you get your child gets what they need to get them a FAPE Free and Appropriate Public Education, you must read the laws and regulations about eligibility for special education services.

 Kids who have a disability but are getting passing grades can be eligible under IDEA.

If you have a copy of Wrightslaw: Special Education Law, 2nd Edition, you will find that the law does not mention grades.

The law does
 not say a child must fail before the school can evaluate to determine if the child if the child is eligible for special education services under the IDEA. According to IDEA, the child's parent or school staff may request an evaluation (in writing!).

BUT, if the principal thinks the law says the school cannot evaluate until after your child receives failing grades on a report card, you need to know to advocate for your child's rights. The principal's perception of the law is important information and will help you decide how to approach the principal and resolve the problem.

Many school personnel view themselves as "child experts" and do not believe parents know what their children need. When you have recommendations from your evaluator, you can ask the school to provide these services.

If you anticipate that the school will resist, ask the evaluator to attend a meeting with school personnel. The evaluator can to explain the nature of your daughter's disability, answer questions, and educate the educators. This will help you get "out of the loop" as the expert on your child.

Strategies: Dealing with Gatekeepers

The principal may be acting as a gatekeeper. She may assume that if she tells you that the school cannot evaluate until your child fails, you will give up and go away. If you have read about who can request an evaluation under IDEA, you know she is wrong.

If you force the issue and demand that the school evaluate your child, the school evaluation is likely to find that she is not eligible for any help - and that her problems are your fault!

Remember what gatekeepers are supposed to do - the principal is doing her job!

You're doing your job too!  You are the best advocate for your child!

Requesting an Evaluation from the School

Now you're ready to get the school to do an evaluation in preparation for getting that IEP/504.  Most importantly put your request in writing and copy several people (true for everything you do).  The school generally has 30 days to start the evaluation process.  Generally you want this testing to happen after the first of the year (when teachers aren't familiar with your child yet), but before Christmas break or several months before the end of the school year (you don't want them to say there's not enough time to complete the testing and put it off until the following school year). 

An excellent post on requesting a school evaluation.   
Information about IEPs from Wrightslaw.

For some ideas about IEP goals and school in general see this post.