It’s My Advocate Anniversary!
It’s hard to believe but the 2022-2023 school year was my 5th as an education advocate. I still find myself feeling grateful every single day that I get to do the work that I love. I’m especially appreciative of the families who have invited me to walk with them along their special education journey. It’s been an honor to get to know each parent and their wonderful children.
I haven’t shared much about my work publicly over the last year or so. I’ve been busier than ever helping families put out fires and pick up the pieces in the wake of Covid. Friends have even asked me if I’m still doing advocacy. My answer is an emphatic ABSOLUTELY! In fact, I’m more resolute about my mission than ever before—to serve as a valuable resource for IEP families. To provide practical knowledge, wisdom, and hope.
I believe that with coaching and guidance, all parents have what it takes to become their child’s best advocate. And I’m the lucky duck who gets to be their coach and guide. Every child deserves an appropriate education, where they’re taught the skills and strategies needed to become the best version of themselves. For students with disabilities, it’s actually the law! And parents are invited to be a part of planning, decision-making, and progress monitoring. They’re given a literal seat at the table so they can make darn sure their child receives exactly what they need. That’s IEP advocacy. I’m grateful for the opportunity to assist. To applaud parents for stepping up and into this role more confidently. And to hold the lantern when the journey turns dark.
A Dose of Reality
Let’s get the bad news out of the way first. Over the last five years, I’ve caught glimpses of the dark underbelly of special education. Things like educational harm. Bad faith. Retaliation. Racial disproportionality. Socio-economic disparity. Issues I had always heard about but never experienced firsthand as a teacher or parent. If I’m being honest, it’s stolen some of the bright-eyed optimism I started with. And if I’m being really honest, there have been times I have wanted to slip on my yellow shoes and walk away. In my heart though, I knew that was exactly why I couldn’t.
You see, there is often a tremendous amount of stress and pain experienced by the families of students receiving special education. By the time a parent reaches out to an advocate or attorney, typically things have already gone pretty far sideways. Some contact me when they’re feeling uneasy. They know something isn’t quite right with their child’s school experience, but have no idea what to do about it. Others are in a state of full-blown despair because their child is failing…keeps getting suspended…is refusing to go to school…can’t read…is falling farther and farther behind their peers…is struggling with behavior…is being bullied by a peer or staff member…can’t sit still or pay attention…has a hard time making friends…is struggling with their mental health. Fill in the blank.
Many of my clients are petrified about the future. Or worried that their child is not safe at school in the present. Can you imagine a worse scenario as a parent? Wondering every morning about whether or not it’s physically/emotionally/psychologically safe to send your child to school? When a child is very young or unable to communicate effectively, parental concern is magnified exponentially. Feelings of fear and powerlessness can be debilitating.
I still wholeheartedly believe that in most schools, the majority of children with disabilities are receiving an appropriate education. If you’re a parent reading this, please allow that to sink in. However, it’s important to stay vigilant and involved every step of the way to ensure this is the reality for your child.
Educational Harm and Retaliation
Did you know there are children three grade levels behind in reading who haven’t been referred for a special education evaluation? Did you know there are teenagers who have been bullied to the point of traumatization and are afraid to go to school? And then the parent is sent a summons to truancy court instead of the empathy and resources they deserve? Did you know there are young children with multiple disabilities and complex needs receiving ZERO special education services even though they have an IEP? Did you know there are principals in high heels chasing young, eloping children up and down school hallways daily? Did you know that Moms and Dads are getting called to leave work and pick their child up from school early a few times a week? Did you know there are 3-year-old nonverbal, autistic babies not receiving even a fraction of the specialized instruction they need during such a critical developmental period?
The term I use for cases like this is educational harm.
Alarming is an understatement.
Even more alarming is that some school districts try to blame parents for the problem. Some may even try to deflect responsibility and cover up their own failings by painting advocates as the bad guys. These are telltale signs of incompetence and desperation, by the way. An attempt to intimidate families into remaining passive. Don’t fall for it.
Administrators may even engage in obstructive behavior in order to minimize parent involvement. For example, limiting access and participation by instructing staff members not to return parent phone calls and emails. Or not allowing the teachers most likely to speak up on behalf of a family to attend IEP meetings. Or not allowing outside providers to observe a student in their learning environment. And the most juvenile tactic I experienced so far—denying the advocate WiFi access so she can’t type her notes during meetings. Yes, really.
But none of these shenanigans come close to the most repugnant form of bad faith in special education…retaliation. This is when a school district intentionally targets a family or staff member in response to their good faith advocacy efforts. It might look like a family getting taken to truancy court or receiving an unnecessary visit from CPS. Or a staff member getting reprimanded or fired. Or a student receiving more punitive consequences compared to their peers. For example, more frequent trips to the principal’s office, more lunch detentions, harsher grading, and sadly, physical and emotional cruelty. This is about as ugly and unethical as it gets. It makes me sick even typing the words.
To be clear, retaliatory practices like these are extremely rare. But they happen. I’ve seen it firsthand. More people need to start talking about it.
The Good News
Now let’s shift gears and put the spotlight back on the good news. Thank goodness there is plenty to choose from. This was an extra special year because I had my very first high school graduates—3 to be precise! One of the benefits of working for a nonprofit agency is that I get to enjoy long-term relationships with the families I serve. I had the pleasure of knowing each of these college-bound students for over three years. I watched them overcome huge obstacles and pen their very own success stories. What a privilege.
Their mothers sent me sweet notes, thanking me for my help along the way. From where I’m sitting though, THEY are the true heroes of the story. They stood by their children through some very challenging times. They were their first advocates. Two single moms raising multiple children on their own with little to no support from the fathers. One mom winning a two-year due process battle against a powerful school district and doing it pro se, without an attorney! First of all, it’s extremely rare for parents to prevail at a formal hearing in special education. But it’s practically UNHEARD OF for them to do it while representing themselves. This incredible mama achieved exactly that. And she did it with tenacity, dogged determination, and pure grit. She refused to give up even when curve ball after curve ball was thrown her way and most parents (me included) would have thrown in the towel. There would have been absolutely no shame in doing so, by the way. Nevertheless, she persisted. What a remarkable advocacy journey to witness.
Replacing Fear With Hope
Want to know what really motivates me? It’s not “winning,” recognition, or a paycheck. The true reward of my work is so much more subtle and sacred than all of that. It’s hearing the relief in a parent’s voice when I tell them I can help at the end of our first phone call. They’re so, so sincere and appreciative. Or watching a concerned parent’s worry melt away when she finally trusts that her baby is going to be okay. Seeing her shoulders soften, brow relax, and smile return…THIS is what it’s all about. Replacing a parent’s fear with hope. Taking some of the stress off their crowded plate to make room for more optimism. This is everything.
My other favorite part of advocacy is sitting in on IEP meetings that hum along respectfully and productively. Where the school team really listens to a parent’s concerns and incorporates solutions into the IEP. Where points of disagreement result in problem-solving, not acrimony. I love it when each expert shares their perspective and then a cohesive plan is formulated to tie all of it together. At the end of meetings like this, that flow as IDEA intended, I always take time to acknowledge it and express my appreciation. If this hasn’t been your experience, please know that it should be and it could be. One-sided decision-making was never the lawmakers’ vision.
There are so many more positive outcomes that come to mind from my first half-decade of advocacy. But I’m not going to sugarcoat it. The work is hard. It can feel exasperating at times. There are meetings where I’ve walked out, looked at the parent, and declared, “That was total bull$#&!” There are some cases where the school district has drawn a line in the sand, so I refer the family to an attorney. The worst part for me is turning families away when my caseload is overflowing. There simply aren’t enough hours in the day to give every case the attention it deserves. I’m working on a few ideas to help make personalized advocacy support accessible to more families. Please stay tuned as the new school year approaches.
I thought it would be interesting to share a few more reflections and nuggets of wisdom I’ve learned along the way…
Number of families served: 100+
Most IEP meetings in one day: 4
Most people in attendance at one IEP meeting: 16
Longest IEP meeting: 3 hours, 20 minutes
Advocacy advice I never thought I’d give, but did:
“If you can, I think you should move.”
Something I never thought I’d do at the end of an IEP meeting, but did:
Hug the superintendent.
My advocacy superpower:
Facilitating communication between parents and school teams.
The wildest things I’ve heard in an IEP meeting:
“Our boss told us we’re not allowed to say that in IEP meetings.”
“We can’t offer that program because it costs way too much.”
“I’m resigning in two weeks so I really don’t care anymore. Student behavior here is totally out of control!”
My best advocacy advice for almost any situation:
- Document everything.
- Ask for the data.
- Request an IEP meeting.
- Follow up.
- Make positive communication a priority. It’s in your child’s best interest to have a good working relationship with your school team.
What I really want parents to know:
- This is really hard. You’re a great parent. Your child is lucky to have you in their corner!
- Administrators aren’t evil, they’re underfunded.
What I really want school teams to know:
Parents who advocate strongly aren’t evil, they’re worried about their babies.