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My son just turned 18.  He is fortunate to attend an exceptional private day school for students with autism and related disabilities.  He is flying thanks to gifted teachers who have no problem thinking out-of-the-box and who value parent & student input.  It’s not perfect, nothing is, but it’s the very best education there is- an individualized one.  That is surely what every student is entitled to.  A program devoid of the boxes and labels, one that focuses just on the student. 

When your kid with autism has amazing teachers at school (and friends), you are grateful. #hopefuljourneyseducationalcenter #fallfestival #endicottpark #danvers #specialeducation #ABA 


New School Year: Is it time to hire an advocate?

This is the time of year parents who are in a dispute with their IEP team may consider hiring an advocate.  It’s, in fact, the best time to do so, as an advocate will help you build your case and obtain the evidence you need to effect change.

If you have educational advocate, you may think about making a change… Keep in mind the following as you decide if you are going to continue your relationship with your child’s educational advocate. First and foremost, advocates aren’t lawyers. We also aren’t licensed (I think we should be).  Every advocate operates their practice differently.

Make sure any potential advocate’s billing practices are transparent. For example, it’s apparently common practice for advocates to maintain consultative relationships with other professionals with the advocate billing the client for the time the professional bills the advocate. At minimum, ensure a potential advocate’s contract indicates how that consulting professional’s time will be billed and at what point authorization for funds would be required.

However, in my practice (as I believe to be best practice) I suggest that parents enter into professional relationships/contracts with whom they choose and billing should be separate. Don’t blur lines- do a “gut check” if an advocate wants to talk to an attorney and you don’t. If an advocate is in over their head, I’d argue it is their responsibility to tell you as much.

Bottom line: check references, make sure any advocate is experienced and knows the laws and regulations, can take notes, advocate strongly verbally, and keep professional during team meetings.  It’s a balancing act.  Trust her and keep communication lines open with your advocate. Make sure you are comfortable with their strategy. (Make doubly sure they have a strategy you agree with!)  Another thing to remember: A good advocate simply does not work in their own school district if their children are still in the special education system.  While there are occasional exceptions to that rule (ie: your kids are safely ensconced in private placements or your kids are 22+), it is in most cases not wise.  It crosses boundaries, and I have witnessed it (with friends) negatively effect the advocate’s and the family’s credibility.  You can’t be fighting for your own kid, fighting for your neighbor’s, and running your Special Education Parent Advisory Council.  CONFLICT.  Be a parent advocate where you live for your own kids, not an advocate for other people’s.

Partner with your educational advocate to work towards the educational programming your child requires. It’s up to the advocate to keep emotion out of meetings and help with formal correspondence (that angry, emotional email you want to send to the school, don’t, put it in your drafts folder, and share your concerns and it with your advocate).  That’s why we’re here- to let you be mom and dad. We will guide you in the best direction based on our education and experience.

Happy new school year, all.

How we educate others 

There’s a typical view many of my high school teacher/educator/guidance counselor friends have: Kids join clubs because it looks good on college applications. Often times those clubs are meaningful, sometimes they are “just for the application”.

Everyone is different, every buddy and every buddy with a developmental or intellectual disability they are paired up with. When volunteering as a high schooler for an organization like Best Buddies, TOPS, Challenger, or  local Special Olympics, are the expectations a bit different than doing track & field or participating in student council?   Of course they are.

Similarly, when in college, volunteering for a non-profit your college, fraternity or sorority supports, the same questions arise.  I offer to all young people (as the mom of children both with and without ID/D and autism): Make the commitment if you choose and keep it.

No one expects high schools kids to desert their other activities and just be a buddy, no one expects a college fraternity brother to all of a sudden have a textbook knowledge of autism, or even know people with autism, if that what their chapter supports. What we need to understand is that the students with ID/D (autism, etc.) don’t understand transitions.   What they do understand can be VERY hard to process. We see so much GOOD, let’s not lose focus. However, when teens are off to college or college kids are forced, or “strongly encouraged”, to participate in a charity, let’s educate them about what it means.  Kids like my Son and my clients have such a difficult time making friends, having other students or adults make that process more onerous and unkind, even without intending to be “mean”, IS mean.  The person whose feelings you might be hurting doesn’t get being abandoned.  Trust doesn’t come easily and consistency and structure are critical to students with autism, for example.

Friendships through Best Buddies made should be real and meaningful and, emergencies not withstanding, we need to honor those friendships/commitments.  We NEED to train volunteers in college to not only show up,  but to meaningfully interact with those served by the charity they are volunteering for.  If we don’t, the only people who lose out on relationships are the students with disabilities (and their confused families).

We need to help high school kids handle transitions, not just an “end of the year” party and the parting words “we hope you will stay in touch”.  We need to have college volunteers trained in how to interact with people with disabilities if they are doing community service.

Equally important, we need to make sure no one feels pressured to volunteer for any roles. It’s not (always) easy to enter the world of a child or teen with autism. We need to promote these inclusionary and volunteer efforts and take the time to educate the volunteers.  There’s nothing worse than people who do these things solely because they look good on college applications. That’s pretty sad.

It’s also sad to see good people who are giving their time for the right reasons but not being adequately educated by their advisors.

Let’s work together to brainstorm solutions to make for successful lifelong friendships and meaningful events where volunteers are present.  That’s the missing piece- we can solve that disconnect by first acknowledging people aren’t encyclopedias and there are deficits in training to tackle.  Doing this, we honor our volunteers and we honor those with disabilities we are all seeking to support and help grow 💙❤️ That’s a true win-win.

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 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.