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| DREAMS FOR DEVIN by Susanne Danella When a child with special needs reaches the early teen years, it is important to plan ahead for transition goals because this process takes a long time. Speaking from experience, school systems are not always cooperative. By telling our story, it is our hope to help others with the transition process so they can know what to expect. My stepson Devin was not diagnosed with Williams syndrome until the age of 11. He did not have the typical Williams heart condition. Devin’s early teachers were not given a name for his disability, yet they were remarkable. One of his first teachers was persistent in trying to teach Devin to read, though he just wasn’t getting it. Then she stumbled onto the fact that Devin learned through music. So she made up songs and rhythms to spell words and sound them out. Devin started learning to read! He now reads words at about a 5th grade level, but he comprehends at about a 2nd grade level. After receiving a diagnosis for Devin, we attended all of the national and local conferences of the Williams Syndrome Association. From these meetings, we found out about the music camp at Belvoir Terrace. For two years, his Dad went with him. At music camp Devin finally found his peers. In the local school, he was grouped in with kids of all disabilities and syndromes. Also about this time, we got Devin his drum set and started lessons. Exposing his musical talents increased his self-esteem 100 %. Everything in his life became easier. Every year we gave all new teachers and aides information about Devin and WS and told them of Devin’s talent for the drums. In the middle school, the teacher handed the information back to us after she had it for one day. She said she didn’t need it and that she “knew about WS.” She “taught all of her children the same.” It was clear that she didn’t know anything about WS, for as we are well aware, each different syndrome has different traits. That year, his IEP had so many errors that we wrote numerous letters to correct matters. The school said that the IEP doesn’t matter--it was written by the same teacher that would be instructing him anyway! After a few encounters such as these, we requested that Devin be put into the high school, as he was 14 years old. The school denied this request, stating that he was too young and that he was eligible to stay in school until he was 21. We understood this, but felt that he had outgrown the special needs class in the middle school and was stagnating. All along we have written many letters to the school, and have never gotten a response in writing, although we have requested it. However, we knew this paper trail that we created could help us in the future and could be essential if a dispute goes to due process. It is so important to have a paper trail. At 15 Devin went to high school and started to make real progress. The aforementioned IEP forms didn’t get to the high school for over a month. This was such a blessing for us since it did not describe our son correctly. Not having this information gave his new teacher a chance to get to know Devin without any preconceived ideas. Again, we gave the teacher a packet about his disability and told all the teachers about Devin’s ability in playing the drums. Beginning to look ahead, Don and I started thinking more about college options for Devin. We learned about Berkshire Hills Music Academy (BHMA), which had recently been established for musical young adults with learning challenges like Williams syndrome. With the help of the WSA conventions, we were able to explore about 30 different post secondary schools from around the US. Many were far away from New Jersey though, and none of them offered all that BHMA offers for a person who loves music. When Devin turned 16 he tried out the Summer Program at BHMA. It was his first time going away to camp without Dad. We were worried because it was two weeks long. We gave him a phone card and waited for a call. He didn’t call and when we called, he rushed us off the phone telling us he was too busy to talk to us. We took this as a good sign. When I picked him up the last day, I brought my parents with me, Devin’s step-grandparents, and we received an impromptu tour. My mother turned to me and said, “You have to send Devin here, this is an answer to our prayers.” I took this to heart, because when they first heard about a post secondary school so far away they were against the idea. The 5-hour ride home with Devin was amazing. He is unusually quiet for a WS kid, but on the way home and through dinner he talked and talked about all the stuff he did and about all his friends and teachers. He had a new confidence about him. My parents asked, “If Devin is so confident and more independent after only two weeks, what will happen if he goes to school there?” We can only guess right now, but that’s one of the biggest reasons it’s a goal for us. We haven’t just read on a piece of paper about a great school, we have seen what it has already done for Devin, through this summer program. At our annual meeting for the IEP in June 03, we requested that Devin be evaluated by the vocational school for the Life Skills program. We hoped that Devin could go there when he was 17, but made it clear that BHMA was our main focus for the future. As a result, the new IEP stated several times that he was to be evaluated. In spite of this, and after many delays extending through the new school year, we were told that the vocational program had a long waiting list, that Devin had to be evaluated before he would even be put on the list, and that there was not going to be another evaluation until June 04. It was clear we needed outside advice. We called Janet Kimble, the WSA regional director for our area, and she got us in touch with an organization called BEAM of Ocean County. It’s a support group made up of mostly mothers who share ideas and experiences. This has proved to be a great source of information. When we decided to hire an advocate, BEAM got us in touch with Lois Fernandez, who has been doing this work for many years and agreed to take our case. She has a daughter with autism and understands the struggle of being a parent with a child with special needs. Because so many things seemed to be going wrong, we started to check up on Devin’s other therapies. His high school teacher had gotten sick in October, and he had a new teacher who was effective in the classroom as well as very honest and open with us. We found out that Devin wasn’t getting OT therapy or even a consultation as was specified in his IEP. We also found out that in the two years that he was in the high school no one had heard Devin play the drums. Therefore all the suggestions made by the teachers and case manager and guidance counselors for Devin’s future had nothing to do with his talent. They did not know our child from anyone else’s. At last this teacher arranged for Devin to play the drums and pleaded with the band director to hear him. We even made videotapes of Devin playing the drums. We gave copies of these as well as a video tape about BHMA it to every teacher and aide, so that they could understand Devin more. In June 04 when we met for our next IEP meeting, we brought our advocate, Lois Fernandez, who helped us a great deal. We knew all the laws, but we didn’t have the clout she had. The school now understood that we meant business. Even though we had done so much research and were very well aware of Devin’s rights, until we got that advocate we weren’t really being heard. Lois said nothing different from everything we had already said. Before we went into the IEP meeting she told us that a lot of times just seeing that the parents actually were paying someone to advocate for them and knowing that they were willing to take this to the next level, spoke for itself and got results. We were amazed at how right she was. It has cost us over $500.00 for her work so far, but we feel it was well worth it. Now, instead of being at the bottom of a long list, Devin is IN the vocational school Life Skills program for next year and he will be receiving more Physical Therapy and more Occupational Therapy as necessary. At her suggestion, we offered to arrange an “in service” training day and consultation for all the teachers and aides that work with Devin, to learn all about Williams Syndrome. The teachers are in favor of this, as they are required to have continuing education. This is a “win-win” solution. We have also requested a Music Therapy evaluation to go along with his other therapies in school. Don and I determined that we want Devin go to BHMA as the only source of a music centered transition program. We want him to start Sept. 2005 when he is 18. Before that June meeting we had given Devin’s case manager a copy of the BHMA video, requesting that she watch it so that we could discuss it at the IEP. When we came to the meeting she had not watched the video and stated that she did not have a VCR at her home. We asked her why she could not watch it in school, in the library? She said all the TV’s in the school were being used by the teachers. Many pointed questions about Devin came back with “I don’t know” or “that is not my job.” There has been just one excuse after another, but we were not going to let these excuses inhibit our son’s future. We asked to meet with the superintendent and we were told okay. But then, when we got to the meeting, he was not there. We requested that Devin be part of the Extended School Year program and we were told yes, and then come the day the school was supposed to start, the bus didn’t show and when we questioned this they told us that we, his parents did not fill out the necessary forms. Now we audio tape all the IEP meetings. This way no teacher or case manager can say “I never said that.” Other parents have told us they bring their cassette recorder and casually say that they have so much going on that they’re forgetful, so as not to insult anyone. Our advocate just came with the recorder, placed it in the middle of the table, and we offered no explanation. We gave the case manager and our advocate Lois Fernandez the names and phone numbers of the administrators and admissions staff at BHMA. Then Lois began periodically checking up on the case manager to make sure she was starting the process for Devin to go to BHMA in 2005. Also, she has gotten us in touch with the local newspaper and we are putting together a story about WS to raise awareness in our community. We are hoping to use the press to raise awareness on the school placement issue too. The one thing we won’t do is let the school get away with doing a mediocre job when it comes to our son’s education. We told the case manager about Bret Fleming, a student who was able to attend BHMA as an out-of-district placement and still participate in his high school graduation ceremonies. Bret is a drummer too—he has WS and is also from New Jersey. We look to all Bret has done and we think that Devin is capable of doing the same things. We gave the case manager the WSA article by Lea Fleming [Heart to Heart, May 2002] about Bret. For us, Bret’s story as well as his parents’ perseverance was nothing short of inspirational. That article was very informative. Our case manager used that information, called Bret’s high school and asked them how they went about getting what they needed financially In July 2004 we began to see some positive responses to all our efforts. Devin was once again attending the Summer Program at BHMA, but we had only scheduled him for a week because this time we could not afford two weeks. Although we had asked, the high school had not given us an answer as to whether they would pay for it as part of the Extended School Year program. On Thursday of the first week Devin was there, we got a call from Cayla Doran at BHMA and found out that Devin’s case manager had actually driven up to Massachusetts to visit BHMA with her husband. We were completely unaware of her plans to do this, yet will be forever grateful. It seemed that before that article about Bret Fleming was read, and especially before she saw BHMA, we were running into a lot of road blocks. However, timing is everything. When she arrived, she was given a tour of the facilities while her husband listened to a visiting string quartet. She was able to see Devin at BHMA and she asked him if he was happy and having a good time. Of course, he said yes. When BHMA called us, we were surprised that the case manager had visited and even more surprised to hear that our school system not only would pay for summer camp as part of the ESY program but also that Devin was funded for the second week! We were so happy and grateful to BHMA for arranging things at the last minute so that Devin could stay another week, because it was not part of the original plan. The staff at BHMA was so helpful and obviously the school spoke for itself. In August, we got the good news from Lois Fernandez that she had spoken with the Director of Student Services for our school district and he had agreed that the school would pay for Devin’s post secondary schooling. Lois then requested that we be sent confirmation in writing. On September 1, 2004, we received a notice in writing that the school would pay for the Summer Program AND for BHMA as a post secondary school. And not only that, the tone was very positive, with the director now saying that he “look[s] forward to seeing Devin transition from Lacey Township High School to a productive and satisfying adult life through his experience at the Berkshire Hills Music Academy.” We couldn’t believe it! We are so thankful for all the support we have gotten through the WSA. This was quite a team effort. If it weren’t for the encouragement from Sharon Libera, the Fleming family, the support of Janet Kimble the regional director, and the staff at BHMA, we would not have been able to help Devin as much as we have so far. We recently filled out his application to BHMA and it was so much fun listening to all his thoughts on the school and about himself. He worked hard at filling it out. Afterwards we started on his party list for the graduation party that we’re planning. And as he sat there telling me about all the people he loved and wanted to invite, I sat back and watched his animated face for a moment. I was looking at this wonderful boy who was now playfully winking at me and loudly telling a joke about his Dad, knowing his Dad was in the next room. As I looked at him I thought that the hardest part of this journey wasn’t all the paper work and phone calls. The hardest part was going to be actually letting him go. But we know we can’t be selfish and we know that it’s time to share him and his gifts. It’s time to let go and let HIS dreams take flight. |
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