Matthew is finishing his freshman year and he, Alice and I recently attended his annual IEP meeting. These meetings often lead to concerns about high blood pressure and lost sleep for parents. Working with educators and professionals in their domain and attempting to speak in their language is challenging. Fortunately my wife and I have established a good rapport with our sons' Teams and have been successful obtaining the services and accommodations both our sons need. Every year Alice and I meet with new teachers prior to the start of school and talk about our sons, their strengths and needs and Duchenne. We exchange e-mail and phone numbers and reassure them that we are open to any concerns or questions and expect them to contact us when necessary.

It wasn't easy getting to this point and sometimes we still run into obstacles. When we attended our very first meeting Matthew was still in a parochial school and we had no idea what supports he needed. We were still trying to understand what it meant to have a child with Duchenne. It was very scary for us and I recall how naive we were. I've been a member of the school's building committee the past ten years and both Alice and I have volunteered in the classroom and on numerous field trips. Being recognized by school administrators and teachers pays big dividends when one needs cooperation. For a handful of field trips the schedule conflicted with the accessible bus and I have driven both boys to Boston and other locations ensuring their participation and in the spirit of collaboration. Alice and I have successfully prevented both boys plans from being changed from IEPs to 504 with the help of school staff. I believe this was made possible by our involvement. Now we focus on self advocacy, access and improving opportunities for our sons.

Back to this current meeting I am happy to say Matthew's teachers reported his grades are excellent and they incorporate small accommodations as needed as part of his program. Matthew took regular level classes as a freshman and will move to "300 Level" in the fall which is college prep. He also was on the Student Council and the Chamber Chorus which required an audition for participation. At the meeting I asked each teacher what changes were made to allow him to complete his work such as using his laptop instead of writing or allowing extra time to complete assignments. I also asked what might be done differently. Each teacher told us Matthew completed work on time and rarely used technology for assignments. Matthew is particular about his penmanship and has wonderful printing. His writing teacher spoke about a photojournalism report Matthew completed and how adept he was with the computer. She encouraged him to consider taking more related classes including participating on the year book committee to edit photos. Through all this Matthew listened and only commented when asked a direct question. He just took it all in.

After the discussion concerning academics the meeting addressed supports and services. Matthew receives OT and PT and has a laptop computer provided by the school. An accessible bus picks him up at home and he has Extend School Year Services for PT which all must be included in his IEP with any additions or changes. The PT told us the school ordered a personal voice amplification device for him to use as needed and at his discretion. His chorus instructor told the group he thought Matthew's vocal projection and volume were adequate, yet he would keep an open mind about the device. His teachers seem to truly embrace the concept that what is appropriate for him should be considered with Matthew deciding if it is necessary. The last topic was extra time for PSAT and SAT testing. Matthew said he didn't think he needed the time, but was open to seeing how it goes.

The last topic I brought up concerned transition services for college. Several years ago Alice and I never thought Matthew would attend college. Now we are making plans and his PET Team had many suggestions and will provide us information and more direction over the next two years so we are prepared. We were told colleges do not have IEPs for students, yet there are disability rights offices. The role of the staff is to ensure students with disabilities are able to attend classes, manage their schedules and commitments and participate fully.

We live three miles from the University of New England which has a school of medicine and other related programs. It would be nice to think Matthew might attend college there, but he is more interested in Political Science and Computer Graphics. While we still have three years it is time to prepare a plan so Matthew can fulfill his potential. What a difference a few years has made for us all.

Brian Denger

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Comment by Nicole Norris on June 7, 2008 at 11:23pm
Brian, Rich & I enjoyed our dinner with your family while we were in Florida for the marathon. We send you all the best and hope to see you there again in January.
Nicole & Rich
Comment by Julie Garcia on June 4, 2008 at 10:31pm
Brian, you and Alice have done a wonderful job with your family and always being there to help support others. So glad to hear Mathew is doing well. Thank you both for all your continued help. You are making a difference to change our children's future. Thank you!

All the best! Julie
Comment by Jenny Garofalo on June 4, 2008 at 10:22pm
Brian, I am so hapy to hear Matthew is doing so well. I love it when somehow everything with the IEP and team falls into place. Tell Alice we said Hi. see you at conference.
Jenny and Dan GArofalo, NJ

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