Tuesday, March 10, 2009

The Dummies Guide to Winning for Your Child in IEP Meetings

It's IEP season and I just got an Email  from a mom whose son is about to transition from preschool to elementary and she'd appreciate any  input to avoid the inevitable conflict and tug of war she was expecting. 

My best advice is:
  • Be prepared. Take nothing for granted. Know what you want for you child and be ready to explain why. Explanations that do not work include; Because, Other kids have it, I heard it works, I think it's a good option won't cut it. Even when it's true it's not a good argument. 
  • Bring your own data. If you have access to outside evaluations and reports before your IEP, get them and bring them with you. If outside evaluations are not an option for you, make a journal and keep a record of what's happening with your child (day by day and even hour by hour if necessary to show patterns) at home, in the community, at school, in therapies. Use your journal to draw a clear picture of what's going on with your child. Showing your detailed knowledge of what's working and what is not establishes you as a serious parent and advocate and it can make all the difference. 
  • Bring Support; Find out how many people are going to be in the IEP meeting and take an advocate, friends or family to try and have an equal number of folks on each side of the bargaining table. It just seems to bring balance and reduce the vulnerability of being outnumbered. 
  • Stay calm, but make no assumptions that everyone will have the same plan for you child. 
  • Visit the school first, see the programs, meet the staff. Your school setting is going to one of the most important settings in your child’s life, you want to build relationships so people will work with you. If you want to be in that school remember it's okay to be firm and fight a good fight, but remember that you're gonna be around these people for years. Think ahead to what you want that relationship to feel like after the IEP, and for the next one.
  • Know Your Options. If the IEP is a total failure or just not what you want to sign off on, don't  sign it. You don't have to sign the IEP if you don't agree with ALL of it. You also have the legal right to challenge it and go to the next level. 
  • It can't all happen at school. In truth there are some things that can't happen at the school level. Some decisions have to be kicked upstairs, it's not a ruse.
  • People First: I always remind myself that teachers are so valuable, and they are not paid enough for what they do. So they must be there because, even if I can't see it, they care they want to help". This helps me to stay calm. I know that making an enemy out of the school team no matter how much we may differ, won't help Nicky.
Then she asked what my first IEP's were like. I was honest…for me those early years were awful and I am so glad they are behind me. The years when we just know so little about ourselves, our children and the systems that are supposed to support us. The years where we are grieving and desperate to help our children, often armed with little more than passion are rough. I'm not sure if the early IEP's were rough because of other people, or if they would have had a different outcome if I had been more knowledgeable  Who know's, but I do know that I have had a few bad and many good IEP's. However it was the bad IEP's that taught me the most, and it is those lessons that I cherish.

Moving on she wanted to understand the challenge so I told her that after Nicky was diagnosed parents began to tell me that the IEP (Individual Education Plan) meetings were nightmares. I was nervous before I ever had one scheduled. An IEP is an annual meeting where parents are invited to join a group of teachers, administrators, therapist to decide everything from what classroom your child should be in, to what services he would get, to educational goals.

I was told over and over that if you were not prepared, your child would suffer because schools didn't just hand out services because the kids needed them, you had to prove you needed them. One mom even had a three inch IEP binder full of every report, evaluation, every doctor visit. She kept detailed notes about his development all neatly organized by therapy and dates. She told me that armed with her binder, and the knowledge that other parents told her "take nothing for granted" and "get an advocate" her IEP for her 5 year old had ended well. She had got the services she believed he needed and she was certain that her preparation was the key to her success.

Being the good warrior I started my binder and my first IEP was a success. Nerve racking but successful. Then came a transition IEP where I wanted him moved to a new school with a program that I felt was better suited to him. It was during this IEP meeting that I learned how bad an IEP could be, for me. The meeting lasted 7 hours, I developed a fear of IEP's that lasted for years. I remember trying to be calm as people debated what was best for Nicky. I even remember that the conversation went so far as to cast blame on Nicky and I instead of staying focused on how to help him...AMAZING. It was so stressful I was physically sick to my stomach before we finished. For hours we debated over which services he would get and why he needed a new program. Fortunately I had spent weeks collecting documents to prove what he needed I had documents what had happened. I knew the burden of proof was on me. I proved that his language skills has regressed in his current setting, I proved that he was not being properly supervised, I proved that the teacher gave him food that made him sick. I showed why if he didn't have an aid he would be a health and safety risk (Nicky was a darter), I proved that he couldn't get access to FAPE (Fair and Appropriate Public Education) with out one on one support. I even came prepared to prove that my kid who has greatly impaired speech and sensory integration challenges needed speech and OT.

They still denied his services and placement. I had to move on to legal mediation. In mediation I presented my information, and I got everything I asked for and everything Nicky needed.

After years of IEP’s - many of which have been incredible successful - I am finally past my over the top sick to my stomach type nervousness. All the same I don't think any family should go to an IEP unprepared. I know I will never go into an IEP unprepared.