Together we can do so much…

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I am a student advocate for children in NYS. Recently I was in attendance at a CSE (committee on special education) meeting when an administrator said to me “I’ve never seen you before, who do you work for?” I replied “I work for students.” “Hmmm, what are your credentials?” administrator asked. I was tempted to pull out a photo of my 12 year old son, but instead replied “5 years of experience.”  “Advocates usually make things adversarial” said administrator. “Advocates aren’t called upon unless things are already adversarial,” I said, and turned the talk at the table back to the important matter at hand-the student we were meeting about.

In my fifth year of trucking across this great state, New York, in an effort to ensure student rights, needed supports and services, and getting home/school communication back on track- an interaction like this one is no big surprise. Most administrators don’t hug advocates. That is a good thing. I view one of the main roles of advocacy as taking the heat off of the parents, and make no mistake, by the time I get there—the heat is usually a full out 5 alarm fire. I want that off the parents, because my other role is to rebuild the communication, trust, and teamwork that this fire has destroyed. It is easier to do that when the administration puts the idea of ‘adversarial’ squarely on the shoulders of the advocate.

So what’s there to argue about? Oh so many things!  Often there is an underlying current of ‘us against them.’ I can’t say where this comes from or why it’s there, but you can feel it and want to pull up a chair and ask it to sit down. When I feel it, as an outsider in a school system, I am often wondering how it feels to all the insiders around the meeting table? It must be stronger for them, no doubt, and I wonder if they are also thinking who invited this in? Knowing how it all works, the ‘process’ is set up that way when you think about it. Parents, with a child with any need, are sleep deprived, worried, scared, and sometimes feel isolated because what they deal with everyday keeps them away from PTA, social groups and the like-they simply do not have time to mingle with the school community. At the CSE meeting-parents, sitting in this room, alone, amongst a bevy of school personnel, some who they have never met, clueless about how any of this ‘process’ should be going down except for what they read on a website, on the internet, or heard from others. To this parent there is only ONE child. Their child- whose care is all consuming, there is grief, huge medical bills, and fear. School staff, in this process, are often underfunded, overworked, have sleepless nights, and worry about their jobs. At the CSE meeting-school staff: some have never met this parent, or the child the meeting is about, often just as clueless as to how this ‘process’ should unfold except what they are told by those above them in the system and from the school’s legal team. This child is one of many. Many schools work under the belief that these children cause budget concerns, staffing issues, and liability. All of this invites the invisible guest: misconceptions, misinformation, gossip, and the “adversarial” is there even before all parties take a seat.

There is process and procedure, in other words, regulations and laws in place that preserve the rights of a student with needs and step by step process on how to ensure these rights in the school setting.  These are complex and ever changing. In my experience, often school staff does not even know what they are, let alone understand them, yet they are responsible for informing the parents.  It is the school’s job to inform the parents and without knowledge and understanding themselves, that is impossible. Right out of the gate, the horse has already fallen down.  Once down, it’s very hard to get up and find the finish line.

There is often decision making based not on the child, and what the child needs, but based on ‘what we’ve always done,’ ‘budgets,’ and ‘Wizard of Oz’ mentality of administrators. ‘Adversarial’ is often alive and well as soon as a referral for a 504/IEP comes through. Statements like “we don’t do that” “XYZ child’s parents haven’t asked for that” and “this is not open for discussion” are the matches that light the fire, and create calls for advocacy. Decisions on ‘classifying’ a student are by law to be team decisions, but statements like these demonstrate lack of following law, and knowledge of what the laws are.

I used to focus all of my efforts on parent training sessions – educating parents on all the ‘need to knows’ when travelling the journey that is the support services process. In recent months I have turned my efforts to educating our educators, because I have seen such a need in this area. Parents soak these sessions up like sponges, some schools, not so much.  Some take offense, where no offense is intended, and draw a line in the sand that says WE KNOW ALL.  That is unfortunate, but my hope as an advocate is that these ‘sand drawing’ schools will see the success in schools that embrace these sessions with open arms, see that it helps reduce those 5 alarm fires, and see that it reduces ‘adversarial.’

I often hear “You’re such a Pollyanna,” “You’re wasting your time,” and a favorite “Your son is doing fine now, so why do you keep this up?”  All valid questions, depending on perspective, and I try to answer them. I want to stay ‘Pollyanna.’ It takes effort sometimes- up against a closed door with bloody knuckles from knocking on it so much, but just like ‘Pollyanna’ –I believe if together, family and school, we traipse through the muddy waters, we can find the shore of safety, inclusion, and success for all students.  Am I wasting my time? I don’t think so, even though some of my work involves months, even years, of constant negotiating and ‘adversarial’ in the end-this is about a child’s life-now in school and their future after graduation.  All children have gifts to share, but for some, they are held back from sharing them- due to the bureaucracy that can be the support services system. However long it takes, it is not a waste of time to be the voice for a child who needs one. As far as my son, he is doing more than fine-he is thriving! Our family owes his success to a group of advocates from the Safe at School program of the American Diabetes Association.  I ‘keep it up’ because I have been in the shoes of a parent at wits end, feeling there was nowhere to turn, crying every night, and filled with worry for their child’s future. I know the frustration, disappointment, and isolation of riding the roller coaster called support services and I learned from the best of the best how to hold on tight and navigate the hills and plunges to find level ground. I ‘keep it up’ because I don’t like how things work for anyone in an ‘adversarial’ support services process-the child, the parents, and the school staff. Again, call me ‘Pollyanna’ but I think we can change the system. I know some school districts already have-and we need to learn from them.

The title ‘advocate’ means mediation, sharing knowledge on process and law, and building the bridge between school and home. It means honesty-when you feel a parent needs to give a little in the process and/or when a school needs to give a little. It is knowing not every request a parent makes can get a ‘YES’, but understanding the ‘messaging’ of ‘NO’ without sharing a valid reason for the ‘NO’ is not best practice.  It is knowing not every ‘no’ is valid, and fighting to change it.

At the end of the day all of this ‘process’ is just paper-the IEP’s, the 504’s, the action plans, the laws and regulations-and they are only as good, as great, or as exceptional as the effort to follow them. Bottom line is this-we need to listen to each other-student, family, and school. Really listen. We need to put students first in the support services arena. We need to work together and tell ‘adversarial’ there is no room at the table. We ALL need to know the laws, regulations, and work with them, not against them. We need to take the efforts off of the ‘paper’ and put them into action.

“For some disputes, trials will be the only means, but for many claims, trial by adversarial contest must go the way of the ancient trial by battle and blood. Our system is too costly, too painful, too destructive, and too inefficient for a truly civilized people.”

Warren E. Burger

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