So, I’ve blathered on and on about consideration of using an advocate in regards to your IEPs, etc….well, I figured with school just around the corner, there has never been a better time to bring the subject up again. Many of us (you all, you are going to read an interview with the Grassos advocate) will find that our IEPs aren’t right, or the teachers aren’t implementing them, or the school is getting X,Y or Z wrong….and you’ll go into a meeting possibly angry, disgusted, or ready to hurt and maim. They (the other side) may seem stoic or unsympathetic. It doesn’t necessarily have to be that way (sometimes, it seems, this is inevitable though) and an advocate can help.
Aimee Rodriguez-Dinehart was recommended to us through our SN peditrician, Amy Pakula, and we have used her extensively. She is an excellent resource for the Grassos when it comes to navigating the maze of public education on behalf of Super D. I thought having her chime in on some areas of advocacy would be worthwhile.
What led you to decide to become an advocate for families that have autistic children?
When I graduated from the University of South Florida in 1995 I landed my first teaching position in a 3-4 combination class in rural Florida, and within the first marking period, eleven of my twenty-three charges were in the process of being identified for learning disabilities. Of those eleven that were screened and tested, six were identified as having a learning disability and in need of special education services. Six separate parent meetings were scheduled and I was invited to attend each one as the regular education representative. After the first four-hour long IEP meeting, I knew I had entered a whole new world.
Through the course of that school year, I battled with the specialists for control of my classroom. It wasn’t so much that I was ‘territorial’, though I’m sure that played a key role in some of my outbursts, as the fact that some of the things we were asking the students to do just didn’t make any sense to me. For instance, during a unit on multiplication, the students were working on timed drills to help them memorize pesky basic multiplication facts. Through the use of Mad Minutes (drill worksheets), students had two minutes to complete thirty problems. Two of my students knew their facts but lacked the manual dexterity to manipulate the pencil fast enough to complete the drills on time. The specialists insisted that fewer problems (15 versus 30) were the correct modification, while I felt that providing a multiple-choice format in which the student circled the correct answer was more appropriate. After trying it both ways, we finally decided that the latter made more sense and the students were able to demonstrate mastery of the multiplication facts. This “aha” moment brought me much-needed confidence in my abilities as an educator and I became much more vocal in letting parents, colleagues, and administrators know what I thought about the curricula, strategies, and learning environments being provided for the students in my classroom.
During the course of my subsequent teaching experiences, I found myself volunteering to serve the classrooms that had special needs children on the roster. While not Special Ed. certified at the time, the state of Florida allowed me to provisionally serve these children in my classroom.
By July, 1999, I was the proud mommy of two boys, Patrick and Aidan. Due to being ‘pre-mies’, both boys were considered ‘medically fragile’ and special care was taken to provide them with supplements and medications to help them overcome some of the health issues they had. While Patrick showed developmental delays early on, these were explained away as being due to his prematurity and addressed via intensive physical therapy. Aidan, on the other hand, exhibited odd behaviors that had everyone, including his pediatrician, baffled. With Patrick, Aidan also received early intervention and was monitored in the hopes of identifying his odd behavior patterns.
That same year, I changed schools within the same county to be closer to home. At this school, a new Autism unit was being started and teachers were being sought for these classrooms. I was offered one of the classrooms, a Varying Exceptionalities classroom serving third through fifth graders. In the dynamics of this class of thirty-one students, I was charged with a profoundly autistic child, “V”. As a package deal, I also got charged with V’s mother, a woman who struck fear in the heart of every teacher before me. A woman I would soon come to admire and, later, emulate.
V’s mom was an avid advocate for her two sons, both profoundly autistic, non-verbal, and significantly delayed. Largely seen as a force to be reckoned with, V’s mom was not averse to steam-rolling anyone in her path to get a chance at what she felt was necessary for her sons’ education. Her first step that year I became V’s teacher was making sure I had the training necessary for dealing with V.
Off I went, across the state and beyond, to receive training on autism via inservices, lectures, and seminars. At the Dinehart ranch, however, things were escalating. Aidan’s behavior had gone from being odd to being downright dangerous. He had gone from sitting and staring for hours at a time to violent head-banging. When he suddenly started spinning and flailing his arms, I instinctively knew what was troubling our young son: he had autism.
The process for obtaining a diagnosis was long and arduous, and brought many nights of tears and ranting, wondering if anyone out there in the expensive world of doctors and specialists was going to be able to give me an answer. Finally, in March, 2001, we had our answer: Aidan had Juvenile Onset Autism. I don’t think I’ve ever cried so hard.
No sooner was Aidan diagnosed than the specialists demand for us to bring in Patrick. Confused, I wanted to know why, as he did not exhibit any of the behaviors Aidan had. While still plagued by some of the developmental delays, he was now able to walk and run independently, was self-feeding, and, though non-verbal, was able to communicate using gestures and basic sign language. Still, we brought him in and the evaluation process started again.
The process was abruptly stopped due to our move to Georgia. Through a few phone calls, we were directed to the Marcus Institute, where we met Dr. Amy Thornhill Pakula, a developmental pediatrician. She became our life-line and a valuable ‘sounding board’ for my many concerns and ideas for addressing my sons’ behaviors and needs. She continued the boys’ treatment and, though we still didn’t have a diagnosis for Patrick, brought us peace of mind in knowing we were doing everything we could to provide for their many needs.
In October of that year, we had our third son, Jon, after a very trying and scary high-risk pregnancy. Shortly after Jon’s birth, we had an answer to Patrick’s developmental delays and strange behaviors: Asperger’s Syndrome. Yet another night of tears for me, I’m afraid.
By the time Patrick started school, we had faced off with Babies Can’t Wait, Blue Cross and Blue Shield, and several daycare teachers and directors. I had acquired quite a few nicknames, most of which are not fit for print, including “HMM”: High- Maintenance Mom. Patrick started Kindergarten in a regular education class and hasn’t looked back since. By the end of first grade, he had qualified for the Target/Gifted/ Accelerated class. Aidan, too, was meeting with success in the school system, though not without some hard-fought battles being brought to the principal’s office.
My decision to become an official Parent Advocate came after many conversations with Dr. Pakula and fellow teachers. As a teacher, I was already providing advice and suggestions “under the table” to parents with special needs children that I was serving. After many discussions, I felt compelled to pursue advocacy in the hopes of making it a full-time devotion, leaving the classroom to address it full-time after serving special needs children for almost ten years.
What makes a good advocate? What experiences must she/he have? Do you feel that she/he needs to have a SN child to be able to empathize/relate?
I think an understanding of what each individual’s child’s difficulties are is crucial in developing a plan for that child’s education. Particularly as it relates to autism, each child is affected to a varying degree and, therefore, necessitates intervention suited to how it is currently affecting him/her. There is no “one size fits all” for these children. From academics to behaviors, each child with autism is unique.
Experience with the public school system is also important. While there are substantial differences from one county to the next and even differences within the same county, most schools operate in much the same way and knowing the “inside scoop” so to speak can be advantageous in preparing a plan that will be accepted and, more importantly, executed as written.
Knowledge of the law, especially the laws that address students with disabilities, is also beneficial in addressing a student’s individual educational plan (IEP) and how it is being followed.
For my little niche in advocacy, my own experiences with autism have allowed me to better understand and relate to the parents and their children. This is not foreign territory for me and, with compassion and understanding, I feel I can not just sympathize but empathize with the journey ahead for these families. I think it’s one of those “walking a mile in the [other] person’s shoes” experiences where, by being able to personally relate with the families I am serving, I can address the very real and personal concerns they have from a ‘mommy’ standpoint, while also providing the more professional ‘teacher’ perspective.
What does an advocate do, exactly? What’s your ‘process’?
With the first phone call, my role is to listen to the parents’ concerns. Often, by the time I am contacted, the parents have had a disappointing and/or frustrating encounter with their child’s school and they are understandably hurt and angry. I listen. I take notes and I listen. Then I listen some more. Once the parent has told me what has led them to me, I then explain what my background is and how I might be able to assist. An initial consultation is then scheduled.
It is at this first meeting that I learn more about the family dynamics, a key piece in the educational puzzle. For instance, more often than not, the mother is the one emotionally “deep in the trenches” of the battle for the child’s education, with the father providing much-needed moral support and a more practical perspective. Understanding these familial ‘roles’ helps me see where I stand and how to progress.
Seeing the home also allows me to see how the child functions at home which, as we all know, is where the child lets “his hair down” and is truly a different version of the child struggling in the school environment. This, too, helps me as it provides a much more complete understanding of the child’s capabilities and what strategies may be better suited for making the child more successful in the classroom.
I leave these consultations with copies of IEPs, doctors’ reports, therapist notes, and work samples. Anything that can shed light on the bigger picture that is this child is taken home to be read and combed through carefully. After I’ve reviewed all the documentation, I draft a proposal for the parents to review. This proposal may include rewording of existing IEP goals, deletion of IEP goals, or creation of new IEP goals. Additionally, the proposal may include changes to the physical classroom, suggestions for how to modify the curriculum and/or its presentation, and ideas for how to address particularly troublesome behaviors.
Parents and I will exchange email and phone communications, changing and tweaking the proposal until it more closely resembles what the parents wand to see in terms of their child’s classroom education paired with what I see as being a realistic picture of what can actually be done—and done well—by the classroom teacher and other related personnel.
Once agreement is reached, we are ready for the IEP meeting. There, my role is to speak for the parents, who are representing their child’s best interests. I am their voice, their counsel.
How do you measure success for your clients?
Realistically, I work for the parents but my true clients are the children. (They just can’t afford me!) In this light, I measure success by creating a working IEP document that I feel will best provide what the child needs to be successful in the classroom. I’d love to say that this always matches what the parents desire, but that is not always the case. I have had disagreements with parents and, even at the risk of losing their business, I have held my ground and argued for what I thought would be best for the child. (I didn’t lose the clients, by the way.) At the end of the school year, when I touch base with the parents to see how the year went, if we can celebrate the child’s successes, then my job was done well.
Is this somewhat a ‘no win’ role?
As I stated earlier, by the time parents contact me, they have already been disappointed and angered by the school system. Too often, bridges have been burned and there is already a very tense relationship between the school and the parents. While this means I have to tread a little lighter, it nonetheless is my job to represent the child. I’ve found that for school meetings already laced with tension, emphasizing what they have done that has worked and appreciating those efforts as we try to move forward goes a long way towards fostering goodwill in the midst of the proceedings.
Parents, too, are sometimes apprehensive as to what, exactly, I can bring to the table that’s going to help them. This is made more challenging when the parents’ agenda is not one I can support. Again, even at risk of losing them as clients, I am compelled to be honest. I simply cannot write up and defend a proposal that I don’t believe is in the best interest of the child in question.
School personnel are tense and weary once they hear an ‘outsider’ is coming in. Sometimes, because they have had limited experience with a Parent Advocate, I am seen as being akin to a lawyer. The reality is that I am merely an interested third party, serving as a mediator and liaison between what the school sees as their duty and what the parents see as their child’s rights. I have no legal power, nor do I wield a mighty big stick. I am a voice for the child… a voice for a child that, too often, cannot speak for him/herself. Once the school personnel sees that I am truly not the enemy, just a negotiator, they are typically more willing to listen to what I have to offer and, in my limited experience, an IEP is written that all are satisfied, if not happy, with.
Hiring an advocate
Being the parent of a special needs child is an arduous task at best. It is challenging, exhausting, and downright grueling. The work is hard and the rewards are few. When dealing with the myriad of issues one is already faced with and then being challenged by the very school system that is supposed to be representing your child’s chance at a successful life, it becomes a very emotional battle to stay sane and still wage war for your child’s rights. This is when an advocate steps in. Because I’ve been, and continue to be, waging very similar battles, I can understand wholeheartedly the disappointment and anger with teachers, principals, and school systems that don’t seem to be doing enough to help your child. I have been on the receiving end of my own fair share of heated IEP meetings and parent/teacher conferences. I, too, have wanted to bang my head on the large conference room table in sheer exhaustion after a long and tedious IEP meeting finally ends in our favor. Been there. Continue to be there. Done that.
As a teacher in the public school system, I know all too well the limitations placed on us by the ever-present red tape and bureaucracy that is the public school system. Budget cuts have made it nearly impossible for children that need 1:1 assistance to receive it. Many schools are switching from a resource room/pull-out model to an ‘inclusion at all costs’ model because of new state guidelines. Materials, staff, and resources are few. Stress and expectations are high. There are too many students and too many of them are in need of additional support, whether they are identified as being disabled or simply at-risk. The responsibilities of each individual teacher are many and the appreciation is virtually non-existent, leading to a vicious cycle of overworked, underpaid and over-stressed teachers. And still, many of us continue to fight, beg, and plead for additional support for our students, doing anything and everything we can within our limited power to assist ALL the students in our classroom.
Being able to see both sides of the equation is what gives me an advantage as a Parent Advocate… and you get a friend for life to boot!
Georgia’s Special Education Scholarship Program (SB10)
There are many things that worry me about this program, and some aspects that appeal to my sensibilities.
First, for my concerns:
• I am concerned with the fact that there’s a loophole in it that effectively negates the child’s IEP upon acceptance of the scholarship monies. While private schools have traditionally not been required to provide special education services in the past, the only reason they are being allowed to receive government monies now is, in fact, for accepting special needs students for enrollment in their private schools. If they are not required to provide services, then basically all that you gained was enrollment in an expensive facility that may or may not choose to provide the very services you weren’t receiving in the public schools to begin with.
• Students with autism, specifically, need structure and patience, with a strong academic emphasis that doesn’t border on the overly zealous push for high test scores. Private schools, in accepting the government’s monies, are going to need to demonstrate that the special needs children are, in fact, demonstrating progress based on some sort of academic testing process. How is this different from the much-criticized state-mandated testing in the public schools?
• Many of the private schools in Cobb county (a county/suburb of Atlanta) are limiting acceptance of students under this scholarship program to those students with only mild disabilities, such as dyslexia. Most of the schools on the list already have long waiting lists, which could mean that a child with a disability would have no choice but to start in one school and, provided a spot opened up, then transfer to another.
• Public school transfers are an option, even across counties, provided parents are willing to transport their children to and fro. This would necessitate knowing what each school district has to offer in terms of special education services. Finding one that meets the needs of your child, you then have to petition the county school board to accept a transfer, which I’ve been told is a lengthy process. Some counties aren’t allowing these transfers. Cobb County is NOT accepting out of district transfers at this time. (I don’t have information about surrounding counties at this time.)
The beneficial aspects of SB10:
• Parents now have financial power. Just like in the real world, money equals power. Parents of special needs children are being given power over the state’s checkbook as to who will get the monies associated with the child’s FTE monies. In other countries, this has allowed parents to carefully scrutinize different schools and the schools, therefore, have stepped up to the plate, offering more in terms of programs, assistance, resources, and extra curricular activities to entice parents to enroll their children at that school. A little competition never hurt anyone and, in the case of special needs children, long overdue this long-suffering and oft-neglected population.
• Parents know parents… who know other parents. I know parents across county lines and, due to these associations, have heard the good, the bad, and even the ugly in terms of what services are available within each system. While no school system is perfect, there is now a stronger voice: MONEY to get the systems to start paying attention to what is so wrong within their own programs. It should be interesting to watch how this pans out.
As for the Dineharts, we are returning to our neighborhood school. We have opted to sit this first dance out and carefully watch to see what happens as the first few pioneering families strike out on their own with the scholarship monies. As a parent, I’m going to be very watchful of my boys’ progress at their new school. As an advocate, I’m going to be just shy of hovering to ensure that their IEPs are being followed as written. Like I said, it should be interesting.
If interested in contacting Aimee, she can be reached at either (770) 973 8587 home, or (770) 365 7278 cell.