The Mother of All IEP Meetings

It was a hot humid morning. I stood in my closet trying to find something to wear. Rochelle told me that I needed a power suit.

“You need to wear heals. Put your hair up too. Oh and paint your nails. Make sure that you out dress every one of them. Wear red or black.”

“I hate red.” I replied. “I never wear red. I don’t own a power suit.” We talked a few more minutes and I hung up the phone. My choices were limited. I was still dealing with a post partum body. My stomach had forgotten to bounce back into shape after the twin pregnancy. I pulled out a pair of tailored pants that I had bought overseas. I would have to wear a pant suit. I went into the closet. I didn’t own a single pair of heals. I pulled out my trust black dress shoes. Michael called them my army boots. I pulled my hair up into a bun and stuck a hair pin. Michael called it a chopstick for hair. I was set.

Michael struck a more imposing figure. He was dark and spoke in a foreign accent. He put on his tailor made suit. I had done most of the research on ABA. I spent hours researching autism, surfing the internet, reading books by the Koegels, Foxx, and other specialists. I even suffered through a book by Bryna Siegel which probably the worst book I read on the subject. I spent time working with Lukas on programming. Yet, I also knew that I was not going to be seen in the same light as Michael. I was just a mom- a college educated mom but just a mom none the less. I was not a “professional”. Michael had a PhD. He would be seen in a much different light than I would.

I sat in the kitchen and fed one of the twins. Michael kept checking the clock.

“She isn’t here.” He was worried. Our babysitter hadn’t arrived yet. “We are going to be late.” I called her house. She wasn’t home.

“perhaps she is on her way?” I offered.

Michael called her parents store. She wasn’t there. Her sister said she spent the night at a friends house and wasn’t do back until the evening. Our babysitter forgot. We couldn’t take our children with us. This was a serious meeting. We had our consultants arriving and our attorney would be present. This could last hours. I had spoken with one mother who said that her IEP lasted seven hours. There was no way our children could go.

Michael told me that I should go and if the babysitter arrived, he would come as soon as possible. I was tense and anxious. This was not a good start to our day.

I drove to the office of Special Services. I pulled into the parking lot and sat. I was afraid to go in. I looked around the parking lot searching for a familiar car. There were none. I started to sweat. It was over 90 degrees outside. I wouldjust have to go in by myself.

Luckily, a little red sports car pulled in at the same time. It was my attorney who was rushing out of his car with a bagful of papers. I told him that Michael was at home with the kids and that our babysitter was a no show. He laughed and shook his head.

We walked into the lobby to see our ABA consultants. There were two of them. The Director of the replication site, Margaret, was a short squat woman with a melodic voice. She was dressed professionally but she didn’t exactly cut an imposing image. She sat on a tall chair and her feet barely touched the ground. She kicked them back and forth like a child. Her PhD and credentials would have to carry her through this. The other consultant was a taller woman with who also didn’t look intimidating. We sat down. Our attorney began talking to the consultants about some strategies he was thinking of. Suddenly, Michael rushed in. Our babysitter’s older sister had come to the rescue. Our attorney, Marios, a fellow Italian, then looked at Michael and me and said, “don’t talk unless I let you know it is okay. Parents tend to say the wrong things. I will direct this meeting.”

No sooner had we sat down then the meeting was set to begin. We walked into a small room with a conference table. Marios sat himself at the head of the table. He told our consultants to sit on his left and told Michael and I to sit on the right. In walked the Director of Special Services. Also in attendance was the school psychologist that I had grown to loathe. A preschool teacher also came along with the Speech therapist that the district had provided to Lukas for the summer. Then came the man with the suit. He was an attorney for the school district who drove from over two hours away. Michael began chatting nicely with the school psychologist. It always amazed me how he could be so bloody nice. Didn’t he realize that we were with the very people who would decide whether or not to spend money on Lukas? These were the people who made comments about my mothering. These were the people who jerked us around for months. These were the people who were wasting Lukas’ time. Yet, there he was. Chit chatting. Michael was diplomatic. I was direct. It was a nice combination. Michael’s naivety and general “people are good” outlook moved us forward while my cynical and stark view kept a watch on our back.

Ten people were gathered in this room. I look back at that moment and realize how IEP meetings are more about intimidation than about helping the child. How many times do mothers go into IEP meetings alone and sit at a table with upwards of 3, 4, or 5 other professionals from the district side telling her what her child needs. Autisms RULE NUMBER 8: I will never go to an IEP alone. I will always get someone to go with me. Never go alone.

The introductions began. I never felt so inadequate in all my life. Everyone had a credential, even Michael. He was not just the dad but a professor. When it came to me, I was introduced as “the mom.” The title rang hollow. I knew I was more than that. I was a medical researcher finding biomedical treatments for my child. I was an occupational therapist who set up a wooden ladder in the back of the yard to help Lukas climb. I was a speech therapist who practiced full sentence responses with Lukas. I was the chauffeur who drove him from appointment to appointment. I was an educator making sure that Lukas had all his preschool skills. I was a nutritionist who cooked new gluten free foods. I was a coordinator who made sure that all those involved understood what each other was doing. I was the psychologist working on Lukas’ emotions and social skills. Deep down, I knew these things but when I looked around that room, I didn’t see that acknowledged. I was just the Mom.

Many IEPs start with a review of old IEP goals. The District had scrambled to set up summer services for Lukas after we requested ABA. Part of it was because they were running dangerously close to violating a law that services needed to start within a certain time period of the request and part of it was because they had no record of success with Lukas and they had no idea who Lukas really was. Michael and I had made a mistake early in the summer by attending a “mini IEP” of sorts without an attorney. The District said this was to only set up summer services and that we wouldn’t need our consultants. When we showed up, a new speech and language pathologist was given to us (one with a masters) was being assigned to Lukas. He was suddenly going to go from 50 minutes of speech a week to five hours. An OT was being assigned. The speech therapist was going to finish out the goals of the previous speech IEP, the one that we didn’t know the existence of and never consented to. The Supervising OT had a few goals. The sticking point was what she viewed to be “mastery”. She placed mastery at 50%. It was her view that this would be mastery and this would be what an autistic child could do in the summer. Michael argued that this was hardly mastery. In the end, we signed the IEP even though we didn’t agree with this. We just wanted services. This was another hard lesson. AUTISM’S LESSON NUMBER 9: If I don’t agree with the IEP, I won’t sign it. Period.

This was the very first thing our ABA IEP discussed. The supervising OT was not present at the meeting. She was contracted services and when she learned that we were going to discuss ABA and have our attorneys present, She elected to not have her employee who actually worked with Lukas come. She said that they had a conflict about the time and would not attend. The head of special services then went over the review of the OT goals, which were mastered. We were to sign off on the old IEP. The sticking point came when the Director wanted to check the box that stated that progress was made. Our attorney jumped on it. He refused to have us check the box. He argued that progress was not made. 50% is not progress. The director shot back that progress was made if his goals were met. I knew why Marios was refusing to allow this. If a district can show that a child is making progress, then parents have little legal room to request alternative services. It was not up to the district to prove that they had something better than ABA, it was up to us, Lukas’ parents, to show that the districts programs were inappropriate. One way to do this, is to show a lack of progress.

The director was not going to budge. She was clearly irritated. In her eyes, progress was made, even though they put the criteria for mastery at 50%. She pointed to the mastry of all the IEP goals for the ST. Marios shot back that the ST admitted that Lukas already knew most of those goals when she started working with her. He looked at the last progress review for the speech therapy goals. The previous speech therapist had listed things like “slowly progressing” and “progressing.” There was a five week break between her services and the new speech therapists’ services. Marios looked at the new speech therapist and asked her again how much he knew when she started working with him. She again stated that he knew most of what was in the IEP already. She was honest. She would turn out to be one of the few people from the District that I would ever trust.

Marios then asked why they can call already knowing goals a success, especially when no one worked with during the time between reviews. I chimed in, “I was working with him.” I worried that breaking my silence would irritate my attorney. Marios smiled.

“Yes.” He said. “You were doing ABA with him.”

Finally, it was agreed that the box for showing progress would be checked but that a statement that the parents disagreed with this would be made next to it. Next came the presentation of new goals. The speech therapist had asked me what I wanted him to work on and we both had talked about the new goals a few weeks before this IEP. She presented her suggestions for speech goals and we agreed. The special ed director mentioned the new OT goals. The young OT who actually worked with Lukas spent some time with me and had come up with some goals she felt were important. She included some other goals that I felt were important. Even more important, she raised the bar for criteria for mastery to 90%. It was our turn. Our consultants pulled out the goals that they felt Lukas needed.

They divided the goals into social goals, language goals, cognitive goals, and behavioral goals. They listed 39 social goals they wanted to work on for the school year. They also listed 47 language goals and 10 behavioral goals. They read through everyone. The school psychologist smirked and said it was way too many goals. We all just ignored her.

One goal was for Lukas to learn to ride a bike with training wheels. It was a social goal.

The district attorney shot up. You don’t expect us to buy you the bike do you? I laughed.

“of course not.” I smiled.

Then it happened. The strangest turn of events. It almost seemed unreal. The district head began to write on yet another form. She turned to our consultants and said, “Here I have written that there are forty hours of ABA therapy plus ten hours of a lead therapist. Do you do the lead therapy?”

Margaret spoke up. “They have Jackie, a therapist with five years experience.”

Then the Director scribbled some more down on a form and said that the consulting services by Margaret would be placed under contracted services. The attorney for the district asked if the district would have possession and copies all the program data and logs kept by our program. Margaret said frowned. “no. But you are welcome to come to look through the books with Antonia present.”

That seemed to satisfy the attorney who began looking at his watch. The director then sent the forms around for signature and told she told Maragaret that all tutors would have to come to the district offices to sign contracts and submit to background checks.

And suddenly, the meeting was over. We walked out of the little room within two hours of entering. As we walked out of the building, my attorney started shaking his head. From behind, Margaret called out “Antonia! Michael!”

We stopped. She looked us and said, “Did I miss something? Did you just get full funding?

Our attorney smiled. “Can you believe it?”

Margaret said she had never been to an IEP meeting that short. She told us we should go celebrate tonight with a big glass of champagne.

I was shocked. For once, something finally went Lukas’ way.

We could now focus on the one thing that mattered- helping Lukas.

I look back to that day and I am still puzzled. Did our district just choose to do the right thing? Did they know that they had procedural errors that would get them into trouble so they caved on the advice of their attorney? Are they just essentially good people? I still don’t know to this day. I don’t think I will ever know the whole truth behind the districts motives. For once, we got lucky. I still think about all the families out there who are not lucky. Who spend thousands of dollars in attorney fees only to lose in court. I think about all the “autism experts” like Bryna Siegel and Diane Twactman-Cullen who testify against parents requesting ABA. Districts pay them hundreds of dollars an hour. What parent can afford to pay a consultant that? What about parents who live in districts that don’t’ mind spending more in attorney fees to fight ABA than they would have spent on funding ABA? Are they just unlucky? Why did God bless us on this day and not another family?

I simply don’t know.