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A beautiful surprise 

Made by my son, almost 18, with autism. Much to my surprise, he apparently understands my job and advocacy pretty darn well ❤️ I will always advocate for you, my amazing Boy 💙 I love you the moon and back and will never stop “sticking up” for you.

 Love, Mom

Gaslighting and Special Ed Advocacy

Are you being gaslighted at IEP meetings?

I remember the first time I was gaslighted at an IEP meeting.  In fairness, it probably wasn’t the first time, but it was the first time that I remember. I was working in a local district fairly frequently (my practice is all about referral, so I tend to have districts I work often in most often).  This particular district had a horrible reputation for their early childhood services (the turning 3 transition was anything BUT seamless).

So once again, I found myself in team meeting with a client (two parents, both a mixture of nervous and angry from the way the initial meeting I didn’t attend had gone, by their report, the IEP team, and an administrator…. and I was 110% prepared. I had read the IDEA and the MA regulations so often they took up a lot of space in my brain.  I had been through more of these tough meetings than I cared to remember.  And once again, the team chair attempted to circumvent the law, doing whatever she pleased.  I protested, never raising my voice, asking for a lot of explanations, I showed them the regs, what the law and advisories, all of them, say regarding EC services for students on IEPs.  They didn’t accept any of this written documentation (none of it authored by me) as real- they pretended the papers were a figment of my imagination.

Has this happened to you? You’re in an IEP meeting. You’ve done your research, you’ve studied, you’ve read. And now you are being told something that you are just certain is not true.  I had two hearings back to back, and they pulled the same crap in each one. I remember longing for an attorney to be there. I kept saying, “You can’t do this, it specifically states that….” and they repeatedly told me that I was wrong, that I “must have misunderstood”.

I started to doubt my knowledge, my memory, and finally my sanity.

After the 1st of those meetings (and I got my concerns in the record, in writing, for there were 3 meetings after I became involved), I immediately emailed an attorney friend who is well versed in all of this, and told him what happened. He confirmed what I knew–I was right, and they were violating the law. In hindsight, I don’t think I could have done anything different, but the experience stuck with me and was a learning experience.

It happened to me again this week, and a few advocate friends mentioned it’s been happening them a lot more often and usually in specific districts.  It’s time to be real. This occurrence is real.

First, what is gaslighting?

Gaslighting became a pop culture term in the 1940s due to the film with Ingrid Bergman. There was a play before her movie, but her movie made it popular. She is being manipulated by a man who wants to drive her crazy, and one of the things he does is constantly lowering the gas lights. When she asks if the lights have been lowered, he denies it, says nothing has changed, must be your imagination. In her mind, she is certain that the gas lights are actually dimming, but since he is saying they are not, she starts to question her sanity.

Definition of gas-lighting:  Gaslighting/gas-lighting is a form of mental abuse in which a victim is manipulated into doubting their own memory, perception and sanity.  Instances may range from the denial by an abuser that previous abusive incidents ever occurred, up to the staging of bizarre events by the abuser with the intention of disorienting (or in these examples discrediting the victim).

Are you beginning to nod in agreement because these seems familiar? It’s basically a situation when you know that you are correct, but are being repeatedly told you are wrong.

Here are some examples that I’ve experienced in IEP meetings, as far as being repeatedly told that I was wrong, when I was clearly not.

If you get the child an IEE, that the evaluator can never have met or worked with the child before. (Not true, the IDEA says nothing about this).

  • That only “life skills” students are entitled to a services ages 18-22. (Just, no)
  • That even if a behavior was determined to be a manifestation of the child’s disability, further punishment/discipline can take place with parent’s knowledge or consent WITHOUT a BSP in place.
  • That ESY is ONLY FOR REGRESSION.
  • That the teach chair’s opinion is the only opinion that matters if the team doesn’t agree.

I do believe it’s ignorance, at times.  However, sometimes I just can’t help but think that it’s deliberate–that they really are trying to convince us to go along with “the district way” even though they know it’s wrong.  It’s beyond maddening. It can make you question your sanity, knowledge, and confidence. It can happen to even the most seasoned advocate or consultant.  On occasion, I have excused myself, made a quick call or jumped on the internet in the hall, and confirmed what I knew to be correct.

Avoiding gaslighting at IEP meetings
  • Go in prepared. You know what your sticking points are going to be. So have your data ready. If you are going to ask for an IEE, have that section printed off from IDEA. If you are debating ESY, print that off and bring it.  Make them go through each point the law addresses.
  • Ask the district to prove to you it’s point. For example, I could not find anything about the Independent Eval (program observation) to be considered for the meeting I have this week.  I told mom to email them: Please show us where it says that IEE evaluators must have met the child before to make the report (again, it’s just an observation). Put the onus on them.
  • As usual, don’t sign anything besides an attendance sheet. Follow up with data and documentation later, with your after-meeting email. Whatever you needed to look up–laws, testing protocols, etc., look it up and send to them after the meeting.
  • Try to remain confident. This is why the IEP process must be a fluid one and on-going. If you piece-meal together a bunch of information the night before, you’re more likely to doubt yourself and fall for this.
  • Allow people (ie: team members) to save face. They may genuinely not know.  Be uber-polite in calling them out on this–this is about getting your kiddo what he needs, not catching staff in a “gotcha.”
  • Get a second opinion from a colleague and do more research when you get home.
  • Go with your gut. Too often, parents are talked out of their gut instincts. Nothing needs to be finalized in this meeting, right here, right now.  Table it until you have time to research and regroup.

As a parent… what experiences have you had with gaslighting?

(Originally published June 23, 2011). 

IEP Season- Do you have a Roadmap?

IEP Tip Time….

IEP Season is in full swing which means if you are considering a change for your child’s program, you should have a detailed plan (i.e.: starting with rejecting the current placement) and also strong supporting independent evaluations. (Reality check: Emergencies aside, it’s likely too late to get a high-quality neuropsychologist to use as evidence or supporting documentation for a placement change). Use the resources of your home team (therapists, BCBAs, developmental and behavioral pediatricians, physician specialists in your child’s disability, and ed advocate) to create a compelling road map which will convince the district to provide an improved IEP. Listen to your home team’s recommendations (if you don’t trust those you have chosen to help your child, you need a change in home team members) and always remember a good advocate helps support your home team and their collaboration with the school team, and brings people to consensus, not argument.  Best practice in one particular district and evidence based practice using research validated methodologies can look very different.  Find common ground when you can.  If there is none to be found because one party’s position is so outrageous, ask for a mediation or bring in a thoughtful, smart, and independent (ie: not swamped and doesn’t delegate to paralegal) parent special education attorney who is willing to work with your advocate and home team, not try to be them.

***Collaboration and relationships matter.***

***Be strategic; make sure your home team members are on the same page you as parents are. If not, splitting is something many school districts have proficiency in. The only person who loses when that happens (playing parent vs. their expert or their advocate and making moms and dads feel guilty) is the child.

Inclusion (not Integration) benefits all students

17022130_10155371268744341_4582075734755310191_n.jpegInclusion: Inclusion is the process of educating children in such a way so that it benefits all students and entails a clear participation of a student with disabilities side-by-side their peers without disabilities.

Integration: Integration is the process in which students with disabilities are absorbed into the mainstream education.

Inclusion: In inclusion, the focus is not on fitting the student and their needs into the mainstream education, but improving participation of all students, educating them not only the same room, but completing the same activities, modified as required. There is no “time out” space or seclusion in a mainstream classroom practicing meaningful inclusion.(There may be a quiet, developmentally and educationally appropriate space which is available and used by all students who may need a break, such as a book nook with beanbags).

Integration: Through an integrated approach, students with special needs have to fit into mainstream education. At best, they get to see typical peers and may absorb other students’ participation. At worst, they are unable to receive meaningful benefit if they don’t receive modifications that set them up for success.

Inclusion: Inclusion focuses on all students, not just those with disabilities. All students receive meaningful benefit from receiving their education in a classroom/school where there are no special learning areas, but where the classroom is designed to never single any student out.

Integration: Integration focuses on students with disabilities and is a location. Many Masters and Bachelors special education programs in the 80’s and early-mid 90’s were much more focused on integration.

Inclusion: To accommodate student needs, the school undergoes change.  All children receive instruction side-by-side, differentiated as needed for all.

Integration: To accommodate the child the subject is changed or chosen (ie: student only participates in “specials” or snack). They are not part of a class, they visit the classroom.

Inclusion again

inclusion-flowchartInclusion (not integration) is what every student is entitled to.

Individualized supports should be added to allow a student access and the ability to make effective progress. At IEP meetings, the discussion should start with HOW a student can be educated in inclusion, not immediately go to a substantially separate program. To start with most restrictive and/or offer “this is our program and how we run it” is simply unethical and wrong.  Children with disabilities are entitled to learn alongside their non-disabled peers.

Frustrating to read IEPs with little or no inclusion, none of it with appropriate or consistent staffing, and a program description under additional information about “The ABC Program is for students with X disabilities and has a teacher and some aides who accompany children as the team sees appropriate to inclusion activities”.

Don’t sign that IEP. Make the school honor the I in IEP.

From the National Down Syndrome Society:

Inclusive education is more than mainstreaming. Mainstreaming implies that a student from a separate special education class visits the regular classroom for specific, usually non-academic, subjects. Inclusion is an educational process by which all students, including those with disabilities, are educated together for all, or at least most , of the school day. Generally 80% or more of the day is what is considered inclusion by proponents-a majority could be anything more than 50%. With sufficient support, students participate in age-appropriate, general education classes in their neighborhood schools.

Inclusion is a philosophy of education based on the belief in every person’s inherent right to fully participate in society. Inclusion implies acceptance of differences. It makes room for the person who would otherwise be excluded from the educational experiences that are fundamental to every student’s development.

When inclusion is effectively implemented, research has demonstrated academic and social benefits for all students: both those who have special needs as well as typical students. Friendships develop, nondisabled students are more appreciative of differences and students with disabilities are more motivated. True acceptance of diversity ultimately develops within the school environment and is then carried into the home, workplace and community.

Inclusion- Make it meaningful

     “If he’s going to lick things (you could replace lick with hit or stim) during the day, isn’t it better he does it in inclusion where he has exposure to typically-developing peers than isolated in a specialized classroom?”- A classroom teacher to a family of a youngster with autism.
     Well, NO.  Let’s have a conversation about what makes inclusion meaningful.  Inclusion is critically important for disabled students when they are able to access learning and receive meaningful benefit from it. It’s not every student’s Least Restrictive Environment, and it’s not meaningful if it’s just a location.
     What makes inclusion meaningful? It is done incredibly well in so many places. Many schools, some may need a push, are dedicated to serving students with Down Syndrome in inclusion and when they access support from experts and have a team that presumes competence, it works beautifully. Students with autism have long been included (not “integrated”, that term needs to be removed from our vocabularies).
     It can be done terribly wrong, even with the best of intentions. IEPs (and classrooms) are not “one size fits all”.
     They are supposed to be developed based on the unique needs of each student. “One size fits all” classrooms have no place in high quality or even appropriate special education. A model which is becoming more common is having all students with autism included in one early childhood classroom. In one district, this “inclusion” classroom is half the day, making the special educator responsible for a larger caseload to progress report on and teach.  This leaves students for whom inclusion may not be the LRE now no highly qualified special education teacher to teach them during that 1/2 day session, despite the law requiring a special educator in the C Grid to teach them. The kids unable to be in inclusion are left in a classroom with just aides, next to the inclusion room.  The teacher in reality is supposed to be teaching two rooms at the same time.  This is not meaningful inclusion, it’s frankly double-dipping the skills of a special educator who was quite busy with 6 or 7 students with autism, who now has an equal amount of typically developing students to teach.
     In another district, there is a substantially separate classroom for kindergarten students with autism.  The class comes to a single general ed classroom for snack and other times, not a few students, but 5 students.  What kind of rationale, but convenience, supports a class, consisting of kids with complicated needs and most with 1:1 staffing, to push into a single gen ed class of 17 students in a school with 4 gen ed K rooms?  What benefit does that provide to the students with special needs and the typically developing students.  For it’s important to note the students with disabilities were physically in the room, but all but one sat at a separate table with their aides.  The other brought tears to the observer’s eyes.  This completely non-verbal student had no communication device (high-tech or low-tech).  She simply ate with the assistance of a 1:1 aide, unable to say hi, the other kids ignoring her, continuing their banter like she wasn’t even there.  The general ed teacher and students didn’t say hi to any of the kids.  That’s not inclusion, that’s a location, just a place to have snack.
     Consider a third district where student attends a substantially separate language based classroom for elementary students.  She had inclusion times in her IEP, but was scheduled to attend specific academic and snack periods in one general ed classroom, but attend specials with another.  That’s not meaningful inclusion; for instead of giving her the ability to make meaningful connections with 21 kids, it made her an acquaintance of 42.  If we want her to make friends and be included, her inclusion should not get dictated by a schedule (and a now departed principal and special ed department  who both don’t get why the parents were upset when they found this out more than halfway through the year and only after an observer noticed there were different kids at a special and at science).
     Broad research strongly suggests children with and without disabilities benefit both socially and academically from inclusive programming. Some of the reasons are that inclusion works when done thoughtfully and with a high level of skill:
1. Inclusion increases the rates of learning and achievement for students with disabilities.
2. Students with disabilities make and maintain friendships.
3. Students with and without disabilities have higher performance in areas of social competence.
4. Students without disabilities have the same or better achievement as measured through standardized testing.
     We can’t forget about the federal law (IDEA) requiring the “least restrictive environment” for students with disabilities, the term used in the Individuals with Disabilities Education Act to support inclusion.  It’s what people like me most often advocate for.  We do it expecting the inclusion to be delivered in a manner which allows the child to receive meaningful benefit from it.
     Least restrictive environment means that, to the maximum extent appropriate, school districts must educate students with disabilities in the regular classroom with appropriate aids and supports, referred to as “supplementary aids and services,” along with their non-disabled peers in the school they would attend if not disabled.
     Inclusion is what I want for every child- when it has benefit to him or her and it’s done right.  If a student is placed in an inclusion program, it needs to be set up to allow academic progress, not just social progress.  To provide anything less is to do a disservice to students.   Students in inclusion can thrive.  Some students, like my son, require a substantially separate setting.
     We must not subscribe to “one size fits all” thinking; we must support students in making progress commensurate with their unique abilities.  We want to provide them education, not just a place to sit and have snack.  We want them to make friends and learn from their friends who don’t have disabilities.  We want the typically developing students to learn everyone is different, but equal, and to have them experience learning which makes them blind to disabilities and accepting of all kids.  That can only happen when we don’t force kids into inclusion settings without appropriate support (not just staff for an aide can be a babysitter, not an educational assistant far too easily) and when we don’t include them for snack, just to have them sit at a separate table.