content contributed by Edmund’s mom Gina
When Edmund was born on a cold, snowy day in December 2005, nobody could have predicted the amazing and often overwhelming changes that our family would go through. After an uneventful, textbook-normal pregnancy and delivery, everyone including the doctor was shocked to see that Edmund had a severe bilateral cleft lip and palate. As the nurses rushed him to the NICU, I lay in shock, desperately trying to understand this life-changing moment.
Soon the shock wore off as I switched into “business mode.” With four other young children to care for at home, I had to get a handle on this, and fast. I researched, I talked to people, I cried, I prayed. Edmund’s first surgery at 4 months old was to repair his lip, and suddenly we had a glimpse of what we were aiming for – not only to give him a chance to have normal oral functionality, but also to support him in having the best life possible, whatever that looked like.
For the first few years of his life, Edmund received speech, occupational and physical therapy services through First Steps, which he loved. He learned to stand, walk and speak with the weekly support of providers who came to our home once a week.
When he was 3 years old, he transitioned out of First Steps. Not long after, at the suggestion of our providers at Riley Hospital for Children and recommendations from friends, he started receiving speech therapy services at Easterseals Crossroads at the south location. We specifically requested Theresa Armstrong at the recommendation of a friend who is also a speech-language pathologist. Edmund quickly formed a bond with her, not just because she gave him snacks (which was one of her therapy techniques), but mostly because she was genuinely happy to see him each week. She connected with him in a way that built trust; she was truly invested in him. Once when she had arrived for our weekly session, there was a wasp nest near the entrance to the building and they had closed the building abruptly until pest control could take care of it. This didn’t stop Theresa; she opened up the back of her SUV and right there in the parking lot she and Edmund had their therapy session.
Over the years, we stayed involved with Easterseals Crossroads attending fun family events and continuing weekly therapy sessions. When Edmund was 8 years old, he got his picture in the 2014 Easterseals Annual Report! Every summer for several years, Edmund attended CampAbility, a summer day camp for school-aged kids.
In 2017 I turned to Easterseals for a different reason. I’d always known there was something “different” about Edmund – in the way he learned and the way he saw the world. After two inconclusive behavioral evaluations at other institutions, we went to the Easterseals Crossroads autism diagnostic clinic. I wanted to know how to support him and help him succeed, but I knew I didn’t have the knowledge I needed. After a thorough evaluation, we received the diagnosis of autism. This opened a whole new world for us, and Easterseals Crossroads provided suggestions and supports which helped me make choices about this new trajectory for Edmund’s educational and personal path.
Theresa continued to advocate for Edmund when we learned a couple years ago that he was having trouble hearing the teachers at school. She wrote a grant to obtain a personal audio system from Anna’s Celebration of Life. While we were waiting for the grant to go through, she arranged for us to borrow a personal audio device from INDATA, the “lending library” of assistive technology at Easterseals Crossroads.
Edmund is now a sophomore at Purdue Polytechnic High School. He’s so excited to attend his fourth year at Easterseals Crossroads Camp ROCKS, a week-long summer camp for teens with autism at Bradford Woods. He still talks about climbing the fire tower all the way to the top last year! We are so thankful, because without Easterseals (and the financial assistance they offer to those who qualify), Edmund might not have been able to have a traditional camp experience like this.
Edmund recently had, as he put it, “a once in a lifetime experience.” For the past few years, we’ve listened to B105.7 on the radio every morning on the way to school. Edmund has grown to love radio personality Sean Copeland and his weekly features, including the “Old Man Rant” on Mondays, “Tuesday Tidbits,” and the “Friday Song.” He won’t listen to any other station, and if Sean is on vacation, Edmund is disappointed and counts the days until Sean returns.
One day in January 2023, after I’d dropped everyone off at school, I heard Sean’s “Friday Song.” He invited listeners to call or text the station and share something they were celebrating. Something “nudged” me to call. Of course, I didn’t get through. So I texted and told them how Edmund was a devoted listener every morning. About an hour later, to my surprise, I received a text back from Sean himself, who invited us to come for a tour of the station. On February 24, we met Sean in the lobby of the Emmis Communications building, and he took us upstairs to the studio where he had pre-recorded the last 30 minutes of his show so that he could spend time with us. When Edmund saw the three large computer screens and the huge control panel, he said, “It looks like you’re flying a plane!” The view from the studio over Monument Circle was stunning, and Edmund and Sean took a moment to enjoy it together. I was so impressed, not only with how incredibly kind Sean is, but also with how responsive the station is to people of different abilities. At one point Sean showed us a clear plastic panel that is placed over the computer screen in the studio. It has braille on it which lines up with the icons on the screen; this allows radio personality Bernie Eagan, who is blind, to run the studio when he’s on the air on the weekends.
Easterseals has been such a big part of our lives for so long, I can’t remember what it was like without them. With each new discovery of what makes Edmund the amazing person he is, Easterseals Crossroads has been a partner, there to answer our questions, offer support and celebrate his successes.