Aspie Advocate: Helping parents and kids win the IEP game

Meet Carol Greenburg, Executive Director of Brooklyn Special Needs Consulting, and recently appointed East Coast Regional Director of Autism Women’s Network. I had the pleasure of meeting Carol at BlogHer (well, formally meeting her at a book reading for My Baby Rides the Short Bus, where I had this picture taken) and from the moment I saw her speak at the Autism session at BlogHer I liked her. She has a wicked sense of humor and her delivery and pause at just the right moment is a gift. She wicked smart, too. We’re proud and grateful she allowed us to interview her for Support for Special Needs.

Julia

Can you tell us a little about yourself and your family?

We have three humans and two cats in our house. (Which species outranks which should be obvious to those in a similar position.) My husband, John, is a marketing and publicity genius, owner of Soho Digital Art Gallery, the only gallery in NY dedicated to the display of digital art. He’s also an all-around great guy without whom I can’t imagine doing any of the work I do. I’m a professional juggler, uh, I mean mother, and constant irritating barrier between my eight-year-old and his ever more creative mischief-making. The hardest part of my job, other than housework, is keeping a straight face in the aftermath of his antics. Like my son I’m on the autism spectrum, which legally qualifies us as people with disabilities, but I prefer to think of us as a traveling consciousness-raising team using our autistic superpowers to defeat ignorance and serve justice. Makes trips to the supermarket more interesting. My little boy struggles with a a severe speech delay, and other autism-related difficulties, which he gracefully balances with song, dance, sports and most importantly laughter.

Can you talk a little bit about what you do? An anecdote to illustrate would be great.

As Executive Director of Brooklyn Special Needs Consulting, an advocacy and consulting company that serves Brooklyn and beyond. I walk families through the IEP process, helping them prepare for meetings and attending meetings with them. I consult with institutions about effective programs for special needs students and offer workshops to parents and professionals. As an advocate specifically, I try to help alleviate parent confusion, empower them as full members of IEP teams, and help school personnel to do the jobs they were hired to, but don’t always have the budget or staff-power do. Calm and imagination are an important part of my job, as many discussions about who gets what services can quickly escalate into fights. Fights rarely serve anyone. (Plus they make my ears hurt. Believe me auditory sensory issues can really ruin an otherwise perfectly good day.)

The best way to tone it all down is to acknowledge the wisdom, even if it’s only the most microscopic shred of wisdom, of the people who disagree with you. So when a bunch of teachers tried to force one of my clients, a fourteen-year-old interested in writing, to take what amounted to a study hall rather than the advanced English class he wanted, I picked one word out of the conversation that came up frequently. Self-advocacy. The teachers and administration kept saying this word reverentially and bundling it up in a way I still don’t understand with this kid sitting in a resource room with very little of the structure he needed and could get out of the English class he himself requested. “I couldn’t agree more about the importance of self-advocacy” I began, because that’s what I believe. “The folks from the school seemed pleased as punch. “And at the heart of self-advocacy is a student’s right to choose his own electives,” I continued because I believe that too. Now, my autism interferes with my ability to read facial expressions and body language, but even I know what drooping shoulders and frowns mean. In the end it worked out for everybody, though. I hear my client is thriving in his class, and the teachers are genuinely happy for him.

What was the inspiration for starting this business?

One of my closest friends was diagnosed with cancer a week or so after finding out her son was on the autism spectrum. Since my son got his diagnosis a year earlier and I had a little experience with the special education system We figured that if she could stand aggressive cancer treatment, I could handle a little aggressive advocacy on behalf her child. About three months into the process, I found myself getting him services that no one else had been able to get. That’s when, with my husband’s encouragement, I decided to attend some workshops and eventually turn pro.

Why do you think families have trouble doing this on their own?

A lot of parents are not fully aware of their rights, so they don’t have the proper information upon which to act. But even the best informed parents often need someone else to step in and offer some objectivity. I occasionally lobby for a service or two for my son, and of course I participate in his IEP meetings. But because he has a unilateral placement in a private school, we need to sue every year to get reimbursement for his tuition. We’re lucky to have a terrific lawyer. Now I don’t have a law degree myself, but even if I did, I wouldn’t represent my own family. Just as lawyers shouldn’t represent themselves at trial, I feel that advocates shouldn’t represent their own families at Due Process, unless there are no other options. And while it’s true that, when everyone is behaving cordially, parents really are the best advocates for their own children because no one knows those children better. When conflicts arise sometimes they need someone who isn’t as close to the situation to help them strategize and steer clear of unnecessary escalation. Due process is expensive, time and energy consuming, and inherently adversarial. Sometimes, unfortunately, it’s unavoidable and when it is I’m always happy to recommend lawyers I trust to represent families. But my preference is to try and keep everything in the conference room so that everybody stays out of the hearing room. That works out better for families and taxpayers and yes even for lawyers. No decent special ed lawyer wants to lose a case and set a precedent that might hurt children in the future.

What one piece of advice would you give any parent who has concerns about their child’s IEP?

It depends what the specific concern is. If the IEP lacks clear goals, you’ll need one strategy, but if the IEP is picture perfect, but not being enforced then you’ll need another. Overall, if you feel like your input isn’t heard or valued, you’re probably correct. A very casual disrespect of parent’s expertise in their own children is extremely common. It’s also legally and morally wrong. I recommend all parents set the tone write parent attachments that paints a paragraph-long picture of your child (motivators, special interests, observations of behaviors at home) and provides a list of his or her most urgent needs, ask to read them right after everyone introduces themselves at the IEP meeting.

If you’d like feel free to give us a link to a blog post you think would be helpful for people starting or in the IEP system and finding it challenging. And please provide us a link to the business site (didn’t know if you want someone to come onto the site in a particular area)

I don’t want to overwhelm anyone with information so I’m just going to give you two URLs that I heartily recommend . I worship at the altar of wrightslaw.com. They have a website with a search engine, and a terrific blog. I’m also a member of Council of Parents Attorneys and Advocates, which does require a modest fee to join, but I think it’s well worth the price. If you don’t find what you’re looking for there, you can always contact me at my website www.bklynsnc.com or just come visit to find out more about my work.