A ten year anniversary is quickly approaching for my family. This is not the kind where we will have cake and celebrate as much as it will be time to think, reflect and wonder how this type of thing happens. In 2000, two and one half years after Matthew was diagnosed with DMD he was kicked out of school. Let me tell you why.

Alice and I wanted our children to attend a local parochial school we thought would provide an excellent education in a close knit faith community. Matthew's sister Rachel was in third grade when we registered him in the school many months before we learned of his diagnosis. The kindergarten screening revealed slight developmental delays and we were given the choice to wait until the next year or let Matthew begin half day classes and see how he adapted and possibly repeat the grade. From the information we were given nothing seemed unusual. We opted to let him start that year deciding he was a typical boy who would grow out of this stage. Rachel has diabetes and that September our family attended a week long camp for families who had children with this condition. While there I spoke with the volunteers, physical therapists from Boston Children's Hospital, who were caring for children Matthew and Patrick's age. I told them about Matthew's reluctance to ride a tricycle and his "clumsiness" asking if they could think of exercises to help him, naively thinking they would know how to help him. One thing led to another and on the last day of camp instead of going home we began a series of doctor visits that would lead to us learning Matthew had DMD. This explained a lot about his falling unexpectedly and not meeting some developmental milestones as expected. For Alice and me the next year went by as if we were in a fog.

Matthew made it through his first year of kindergarten, yet at the end of that school year we decided he should repeat the grade this time taking full day classes. Alice took a job that year at the school as a teacher's aide for the preschool where Patrick had started. As the year progressed Alice and I saw how much both boys enjoy their friends and liked the school. We hoped to keep Matthew in school with his brother and sister despite it being inaccessible.

The school building is in an old split entry type with the first floor classes one half flight up and the cafeteria and art room one half flight down. The library is on the second floor with more classrooms. We kept talking of ways for Matthew to stay and visited other buildings to see accessible adaptations. Eventually I visited a building with a platform lift that folded at the top of a landing when not in use. We decided this might be an economical way to make the building somewhat accessible to accommodate Matthew when the time came that he stopped walking. Of course we believed it would still be a few years away.

As soon as Rachel was enrolled in the school I attended all school board meetings and was familiar to all members. The fall of Matthew's first grade year Alice and I decided I should approach the school board asking them to allow us to raise funds for a lift and any alterations to make it all work. I had spoken to several contractors and had gotten rough estimates helping me to determine it would be possible. I even measured the doorways and figured a spot where traffic was light that seemed ideal. I spoke to the principal the morning of the meeting to let her know of my plans. She said it would be a good addition and as she had joint problems added it would be useful. That evening I laid out my plans after explaining that our son had DMD and would eventually need a wheelchair for mobility. The board listened intently then thanked me for the presentation and excused me to discuss this and other matters in executive session. Not knowing when they would respond I went home to tell Alice about the meeting. Later that evening I got a call from the chair of school board who told me they supported my idea, but I would need the diocese to approve the plan. Within a few days I arranged to meet with the superintendent who suggested Matthew attend public school and offered many reasons why it would be better, yet she eventually relented and told us we could start the fund raising. Alice and I were not pleased with her rigid position and old fashioned ideas about people who had disabilities. The next step was to get firm estimates and assemble a fund raising committee.

It took several weeks before we had an estimate for the lift and some ancillary construction. The price didn't discourage us so Alice and I asked friends and acquaintances to be part of a committee and by February we started raising money in earnest. From here things moved quickly and we were encouraged by the community's response. Local newspapers printed stories about our project and we had much business and individual support. Our relationship with the principal seemed to deteriorate, but we didn't understand why. Anytime we had an idea that involved the school she found a reason to exclude any participation. Our committee was fantastic and soon we raised over $18,000 of the $25,000 needed for the project. The committee held dances, solicited businesses and had more ideas to close the gap. It seemed as we got more positive media attention there was more friction from the school.

One afternoon in early April I came home and collected the mail finding a letter from the school. It was time to re-enroll students and I didn't think about it until I opened it and read the principal's note. She wrote that Matthew would not be allowed back the next year and all fund raising would cease. Her reason was the school could not meet his needs. Alice came home shortly after and I showed her the letter. She immediately became upset telling me she had seen the principal that morning and she mentioned nothing to her. Her first reaction was to quit her job, but after speaking to the preschool teacher she calmed down enough to stick it out until we had this figured out. I called together our committee and we brainstormed how to handle this dilemma. Nothing made sense to us about this turn of events. One mom from the committee, Jean, and I started looking into Special Education laws to see what supports the school and Matthew could receive and whether or not we could resolve this quickly. Together Jean and I explored every option and tried to develop a reasonable plan so Matthew could stay.

Over the next month we attempted to negotiate a solution. Many times Alice considered quitting her position, but remained for her class. We next heard from the press that the diocese had contacted them to let them know Matthew was not to return to the school because they couldn't handle his "needs", yet never saying what his needs really were. It got more crazy every day. The papers and local news were fixated on the story and Alice and I worried how it would affect our children. Our story ran as the lead on the evening news several times and we were hurt and embarrassed. In spite of the diocese's call to end the fund raiser money continued to be collected and we surpassed $31,000. Every time the story was on the spokesman from the diocese would repeat that the school couldn't meet Matthew's needs and we tried to dispute that when given the opportunity. Our committee proposed enlisting volunteers to help Matthew at school and even fund raise further to pay to make more of the building accessible or hire an aide as his teacher told us this was part of the problem. Nothing worked and we reached a point where we appealed directly to the bishop asking him to intervene and asked that he let us know in one week. We all believed that because of the strong community support the bishop would have no choice but to allow us to install the lift and let Matthew stay in the school.

During that week we again went to the diabetes session at the family camp hoping the time away would give us a break. All families there supported our position as did the volunteers. It really wasn't a break as everyone wanted to talk about the issue except us. The time went quickly, yet before the week was finished a family who had a television told us the diocese had announced they would not allow Matthew to return to the school. We felt humiliated and betrayed. When we got home all the papers and TV stations wanted interviews and several days later we agreed to tell them we had run out of options. We were all very discouraged. Over the next several months we returned all donations. Alice decided not to return to school and as it was only a couple of weeks until school finished. Matthew did not return either. Rachel finished out the year and wasn't treated poorly.

Most of our committee stayed to help us return all donations. Jean worked so hard trying to help us resolve this urged us to seek legal representation. Alice and I were not sure, but agreed to speak with an attorney. The firm specialized in Special Education law and said we had a fairly good case. We just didn't have the money and there was no guarantee of success. We decided this wouldn't work and took time to think this over.

Alice and I took the summer to think of what we should do, if anything. By fall Jean again convinced us we should pursue this further. She and her husband offered to help us pay the attorney, but we considered another option we had explored, but rejected earlier. I contacted the Maine Human Rights Commission and filed a complaint against the diocese. I did this even before we had a lawyer. The people I spoke with at the commission told me they had been watching this case and were expecting us to file. Alice and I spoke with three different attorneys before we agreed on one who would represent Matthew. Filing this complaint was difficult and some people like my mother thought we should not have gone this far.

That fall Matthew and Patrick started public school while Rachel stayed in the school to be with her friends. I was on the building committee for public schools and had a great rapport with the principals and superintendent. The school understood our position and made our boys feel welcome. Maybe because of the publicity they took the extra time to ensure Matthew and Patrick had the services and supports they needed to do well in their schools.

Matthew's attorney was very knowledgeable and honest and let us know what to expect. She warned us people might not understand why we were making the complaint and expect some backlash. She was impressed with the paperwork and notes we had saved telling us it would help us. We included Jean in our discussions as she had been so supportive throughout the process and had represented our fund raising committee when things became heated and I stepped aside to deflect some attention. The diocese responded to our complaint by sending us a packet of paper close to three inches thick. This initially shocked me, but as I began to go over their response I realized how little substance was there in their response. As the process moved forward we would send a reply and the diocese would respond until there were no further points to challenge.

Once we ended all the exchanges of documents we reached the point where an investigator wanted to have a hearing with all parties for fact finding. Alice, Jean and I met our attorney in Portland to answer questions along with the diocese's people. It was not easy being in the same room as the principal again along with the superintendent and the diocese's attorney. I felt like we were at the inquisitions. The investigator asked about many aspects of the process trying to figure out the time line and what really happened. The diocese tried to say we never had full permission to raise funds and begin the project and she asked many questions to try to figure it out. We had paperwork including minutes I had copied from the school board giving me their "blessing" and testimony supporting that we did have permission negating their statements. We took a break at one point to regroup. The investigator had been asking about our efforts to negotiate a solution and Alice wanted a minute to talk. She and Jean talked with Matthew's attorney about how she offered to resign from the preschool to be his aide. The principal and superintendent claimed it was inappropriate to have mother and child in a classroom. During this break they recalled that one of Rachel's teachers had her son in her class at this same school and also remembered other teachers who had their children in their classes. When we returned, things began to change and it seemed more was going in our favor. One of the most damning parts of their testimony was when the principal was asked if she said to a reporter that allowing the lift would "open the floodgates for all disabled children in the area to attend her school". She denied saying this, then proceeded to tell the investigator that if the school had a lift they didn't have the people to handle all the disabled who would enroll. I watched as their attorney and superintendent turned white. Four hours later we were all excused and thoroughly exhausted. I remember standing in the parking lot after talking to Alice and Jean about how the meeting went. Jean was convinced we would prevail and we all hoped she was right.

The next step was as difficult as any other aspect of the investigation. Our case would have to go before the Maine Human Rights Commission and they would vote whether or not the diocese violated Matthew rights. The commission meets in Augusta which is a two hour drive for us and I remember how hard it was to take Matthew there. He was now in the second grade and using a manual wheelchair as he only recently stopped walking. He seemed so innocent and I hated to put him through all this especially if things turned out badly. We got to the meeting room and sat near the back. Matthew's attorney had explained the process to us and we knew it was now up to the commissioners. There were several cases ahead of us. Each side had about ten minutes to present their position and it was a bit deflating as all were found to have no reasonable grounds that a violation had occurred. We were all focused on the proceedings except Matthew who was content drawing pictures.

The time had come for Matthew's case. Matthew's attorney explained how the school had denied Matthew enrollment solely based on his physical disability. She had posters printed with the federal and state laws she said were violated. The diocese's attorney got up and repeated the same story that Matthew had these "needs" and the school could not provide the services he needed and they were not required to provide accessibility under the ADA. After he finished it was up to the commission for a vote. There were six on the commission. They had a short discussion and voted, five in favor to find grounds that Matthew's rights had been violated. Somewhat in shock we collected our things and quietly left the hearing room. Once outside we were met by the media who wanted to know our thoughts. I told them this victory was bittersweet. While we were glad to be vindicated it was sad to learn this organization had been found to have harmed Matthew.

Jean had come with her husband and we all went to lunch after the hearing. The restaurant had a TV in the dining room and Matthew's victory led the noon news. It all seemed very strange and the staff congratulated us.

The next step was to settle our case or sue for damages in federal court. The diocese contacted our attorney and made arrangements to meet with a mediator who would help us come to an agreement. By now it was late December 2000 and we had had enough. Matthew's attorney arranged for another well known attorney to help us mediate with a possible settlement. We met in his office a week before Christmas and over the next eight hours he would bring their offers to us and we countered or accepted. By evening we had an agreement. Some of the settlement is sealed, but two things we are most proud about can be shared. First the diocese installed the lift in the school at their expense and it has been used by students with injuries and others. The second and maybe most ironic thing we were able to change was a new diocesan policy of nondiscrimination in any school in the state for those with a disability. The diocese offered to let Matthew back into the school for the fall. We let him decide and as he had made so many changes and now had settled in he didn't want to change. That was OK with us. We had asked that the principal be removed from the school, but they wouldn't agree to this. The first of the new year her resignation was announced.

It was very long struggle getting through this. When it was all done this had taken two full years from our family. This took so much time and energy and it affected our family in many ways. Alice and I are grateful it is over and while it was painful we made our decision to pursue this because we couldn't allow the diocese to turn their back on a community and a small boy with DMD. We made many new friends, figured out who really stood with us and learned a lot about ourselves. In the end it was this small boy who was the winner. I am proud that this boy is my son Matthew.

Brian Denger

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Comment by Teresa on April 14, 2009 at 4:32pm
Wow what an incredible story, It touched my heart. Thank you for sharing
Teresa Grant
Comment by Cheryl Markey on March 25, 2009 at 2:23am
Thanks for sharing this....I live here in Presque Isle Maine....my 23 year old son has Duchenne, his name is Adam.

Comment by Paul Johnson on March 24, 2009 at 10:00am
Makes me really glad that there are folks who fought these fights before me - because reading this stuff makes me wonder sometimes if I'd have the fortitude to persevere. But I've surprised myself in some of the things we've already dealt with... so here's hoping I don't have these types of roadblocks - but if I do - I can handle them as well.
As always - I enjoy reading about your experiences and thoughts.
Best wishes Brian.
Comment by Robin on March 22, 2009 at 8:15pm
We settled out of court with a Catholic high school who denied one of my twins enrollment. , This happened four years ago. We settled with them two years ago. We live in Minnesota. I would love to talk more about this with your family. My son is now graduating from high school, and will attend college this fall.

Comment by Jenny Garofalo on March 21, 2009 at 3:28pm
thank you for sharing this. It is exhausting reading but helpful in that when each of us is "fighting" or "defending" or own little piece of DMD in our own community we can remember we are all crusaders for our boys. thanks again!

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