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Bobby’s search for services — part II

Editor’s note: Linda Davis has served as coach for the King George Little League Challengers and is coordinator for King George Special Olympics. Her years of experience working with children in the special education program gives her a unique perspective on how the program is serving children with special needs. This is not a traditional news story — this is one woman’s perspective of one child’s situation.
And just as each student’s experience is unique, so are the qualities of their teachers.

This is a continuation of the series written to document the IEP (Individual Education Plan) process of a student at KGHS. Part one of the story was printed in the Nov. 17 issue of the Journal.
By the time the first article was published we had already attended one meeting. Before I tell you about that, I want to tell you a little more about Bobby and his family.
By now you know Bobby is 14 and he is in the ninth grade at King George High School. He has Down syndrome. We started this process because Bobby has regressed. Bobby’s mom asked me for help, I looked at his IEP and so the journey began.

Today, I want to tell you about Jenn, Bobby’s mom. We met several years ago. She brought Bobby to baseball practice where she sat alone and didn’t talk to anyone. I just thought she was shy. The team worked hard to make her feel welcome. The other moms would always try to include her in their shenanigans. With her baseball family she began to open up. It was a beautiful thing to witness.
It took Jenn a long time to trust us. Back then, I didn’t know why. I know now. She told me and she gave me permission to tell you.
Jenn wasn’t born timid. At 19 years old, she suffered a gunshot wound to the head. It was a random freak accident. Her vision and hearing were damaged. Things that were simple before the accident became more difficult. Reading, which she had always enjoyed, became a chore. She struggled with simple things and she was embarrassed. Before she was shot, she was bright and outgoing.  After the accident, she retreated and shied away from other people — she was afraid they would think she was dumb.
When we first looked at Bobby’s IEP, I asked Jenn why she signed it and she said “because they told me to.”  
We started to talk to other parents who had gone through the process. One parent said, “You have to fight, you have to walk in there and demand that Bobby get the services he deserves.” Jenn started to shut down. She said “I can’t do it. I don’t fight back, I cower in the corner, I could lose my job.” That’s when I started to contact advocates for her and Bobby. Most of the advocates we talked to were just as strident as the parents. But when I spoke with Lisa Wilson Gidcumb, she was calm and comforting. She agreed to help Jenn with Bobby’s IEP. Jenn also asked me to be involved, I think because she trusts me. She knows I don’t judge her, she knows I don’t cower in corners. She knows I love Bobby.
With our new team in place we scheduled the first meeting on Oct. 7.
Before the meeting, the teacher tested Bobby because we requested it. Bobby’s last evaluation was in 2004. With the new test results, Lisa was able to immediately identify grade level regression. Regression usually means the child is not getting the services he needs to progress. It could also mean he’s getting the wrong services.
 Pat Nealon, Supervisor of Special Services for King George County Schools, was present for the meeting. When regression was mentioned, his first reaction was to ask if the parent had done anything with Bobby over the summer to further his education. Jenn started to shake.  She shut down.  She immediately felt it was her fault. That’s when Lisa and I stepped in. No way Jenn was going to be made to feel like she was to blame.
Lisa stated “Of course she works with her son, and even if she didn’t, this level of regression can’t be blamed solely on the parents.” Jenn showed the team a book she had purchased to help Bobby learn to read at home.  She talked about the things she worked on with Bobby and then apologized for not doing more. She told the group she worked three jobs and only had a little time each night to help all of her kids. She was quiet after that. She was embarrassed.
The team agreed on several items. For the most part, we corrected bad information in the IEP, like the part when they refer to him as a girl.  And we asked that Bobby be evaluated so we could begin to develop an effective education plan. We planned to meet again when we received the test results. The items were agreed to by everyone, but Nealon said there was a problem with the printer and he was unable to print out the corrected document. He said he would make all the changes and send a draft to Lisa and Jenn.
We received the first draft and many of the agreed upon items were missing. Lisa sent Nealon an itemized list of the changes we had agreed to. There were still 50 typos and spelling errors in the IEP, so Lisa gently reminded him that IEP-online has spell check. We got the second draft, it only had 48 typos, but some of the items we agreed to were still missing. Now, I certainly don’t want to accuse anyone of deliberately omitting items, I can’t believe anyone would do something like that. I can only state with certainty none of the errors or omissions gave the advantage to Bobby. Not a single one.
Since that first meeting, we have made some progress. Jenn requested homework for Bobby, and he received 25 pages the first night. The next night he received 18 pages. Jenn was exhausted and Bobby was not getting to bed before 10 at night. I looked at the homework and had several special education teachers look at it. We were flabbergasted. He was getting a week’s worth of homework every night.
The homework did not appear to connect to anything he was supposed to be working on in school.
One of the stories he was given to read explained in graphic detail the pathology of warts. Bobby, who according to his most recent evaluation, now reads at a pre-primer level, was unable to identify words like Papillomavirus. He couldn’t seem to comprehend the statement; “Human papillomavirus affects a wide variety of animals. They cause tumors that erupt from DNA mutations…”
 It took Bobby and a tutor more than an hour to read that story and answer the questions. That was only one worksheet. We still had 10 more to finish by morning. Jenn now regretted requesting homework because she was being buried in it.
We requested the teacher not send so many assignments home at once and asked her to make sure the work he was doing at home reinforced the class work. We asked for samples of his class work. We did not receive anything until the day before the second meeting, nearly a month later.
We still didn’t know how Bobby was spending his day and we still didn’t have a workable draft.
Since we seemed unable to get Nealon to produce a proper IEP, I called division Superintendent Candace Brown personally and informed her that our only goal was to make sure Bobby got an appropriate education. I told her it was obvious mistakes had been made, but we were not interested in pointing fingers; we were only interested in fixing it.  I also informed her that I would be writing this story and I really hoped to have a good outcome to write about. She told me she would speak with Nealon and ask him to play nice. She assured me he would cooperate. She has been copied on the e-mail chains that went back and forth in an effort to keep her abreast of the problems we were having.
We requested another meeting.
The final meeting occurred on Nov. 16.
Those in attendance included Bobby’s teacher, his speech therapist, his art teacher, Nealon, Lisa, Jenn, Bobby and me. Before I tell you what actually happened, you should know we were expecting it. We had been warned.
When the meeting began, Nealon informed Jenn he would speak only to her and he expected her to speak only to him. He was not going to allow anyone else to speak to her or for her. When Jenn said “I don’t understand, I brought them here to help me.” He informed her he thought she should understand because she had been to 14 other IEP meetings. We have no idea where that number came from. That statement is not true.
Then he said if she had questions she would ask him, and he would answer her. If he was unable to make her understand she could call a recess to speak with the other team members.
As I said, we had been warned. We tried to prepare Jenn.  Lisa clarified with Pat on tape that he really meant to say Jenn was not going to be allowed to speak to us or ask us questions. Pat said “That would be my preference. This is my meeting and I will run it as I see fit.”
As soon as it appeared he was in control and we were going to obey, he began to go through the pages, telling Jenn to look at the information without explaining what she was looking at or what it meant and then she was to tell him whether or not she agreed or disagreed. He went quickly, flipping from page to page. Not telling her what page he was on.  At one point she said “I don’t understand this” and he responded, “You should understand it, I think you do.” On the first page I noticed an error, so I moved closer to Jenn and handed her a note. Nealon immediately said “Mrs. Davis, if I hear one more thing from you, I will ask you to leave.” Well, you can imagine my chagrin. I just smiled, put my hands in the air and said “Gee, Pat, I’m sorry.” Lisa asked some questions, he didn’t answer her.  We watched as Jenn started to falter. This was familiar; Jenn knows exactly what it feels like to be bullied, isolated and made to feel small and stupid.
It was extremely hard for Lisa and me to sit quietly, but we knew if the battle was going to be won, Jenn was going to have to stand up for herself.  At times, we both wondered if she was going to give up. Finally, I passed Jenn a note that said, “You can stop this.”  She asked Nealon for a break. He kindly granted a 5 minute recess. Outside, nearly in tears, Jenn looked at me and said, “I feel bullied and intimidated.”  I said “Make it stop.” Then she walked back into the room and when Nealon started to grill her again, she looked right in his eyes and said, “I want to stop now, I feel like I am being forced to answer questions and agree to things I don’t understand.” Nealon adjourned the meeting, he had no choice. We gathered our stuff and we left.  
I am so proud of Jenn. She stood up for herself and her son. It was a beautiful thing to witness.
Bottom line, Bobby is still being taught according to an IEP that refers to him as a girl and looks like it was written by a 4 year old. Jenn has sent a letter to Dr. Brown relating what she experienced at the meeting and she is filing complaints with the Department of Education. Jenn is ready to fight for Bobby. I will keep you posted.

Linda Davis
Special to The Journal


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