Duty Calls: Raising Special Needs Children In An Air Force Family
The Gagnons are one of many Air Force families who have children with special needs. With her husband, Todd, currently on his second deployment, Maureen Gagnon is managing her three young sons’ special needs on her own.
“A typical day is therapy, therapy, therapy, therapy. We go to therapy four days a week. It’s our new normal,” Maureen says.
But she’s not alone.
“I get the benefits of not having to work, and Todd takes care of everything. I don’t ever consider myself a single mom. I think it’s just our normal way of life. He always sends me little messages, and if he knows we’re going to the doctor’s, he’ll say ‘Stay strong today. Keep your sanity.’ He’s there emotionally, just not physically.”
Plus, their boys, Aiden, 6, Keegan, 4, and Oliver, 3, have a routine with Dad while he’s away: They carry their “Daddy Dolls” everywhere and video chat online once a week. Plus, in the evenings, Maureen says they mark off their “Daddy Calendar” and get a piece of “Daddy Candy.”
“Every night, they go to the calendar, and we put a sticker on the day. And we’ll high-five each other, and say ‘another day down!’ Then they get a piece of candy. They can see that the candy bowl is really full right now, but when we get towards the end of Daddy’s deployment, the pile will get smaller.”
Todd’s deployment isn’t the only trial the family has endured with incredible strength. All three of the Gagnon’s sons have special needs. They manage Aiden’s ADHD mostly through diet. Keegan struggles with an immune system disorder and is autistic, but has made great strides at Arkansas Children’s Therapy Group in Jacksonville. “When we went over two years ago, I told them ‘Keegan is still not feeding himself and he can’t dress himself.’ Within a month, he was able to dress himself. He went in barely talking and now he speaks in full sentences!”
The youngest, Oliver, has a list of “medical diagnoses as long as my arm,” Maureen says.
Several years ago, before the family was transferred to Little Rock Air Force Base, Maureen was surprised to find out she was pregnant with their third child, Oliver. She had a difficult pregnancy and her water partially broke at 19 weeks. Labor was stopped, and she was sent home and put on strict bed rest, but developed a blood clot.
“I told my husband one day ‘I feel like I just cannot breathe. I feel like I’m dying.’ When we got to the hospital, they said that yes, I was having a heart attack. The blood clot had travelled into my lungs and I had a pulmonary embolism,” Maureen says.
The doctors gave her blood thinners, but quickly realized they needed to deliver Oliver to save both of their lives. As the doctors rushed to reverse the blood thinners, Maureen’s labor escalated and she bled out. “I almost died. They said I coded at one point, but I came back,” Maureen says. “They called my husband in to say goodbye to me. It kills me that I put him through that.”
Though Oliver was eight weeks early, he was the biggest baby in the NICU at 5 pounds 13 ounces. But his blood pressure was high, and he was turning blue and choking during meal times.
After months of doctor visits, they couldn’t find out what was wrong. “They sent him home on blood pressure medication and told me that I couldn’t nurse him because he was aspirating. But he was still turning blue even on a bottle. It took him two hours to eat four ounces. I just kept saying ‘something’s not right.’”
When the Gagnons were due for new orders, they became part of the Air Force’s Exceptional Family Members Program, which helps match special needs families with bases that can provide appropriate medical services or special education. They were sent to the Little Rock Air Force Base because of its proximity to Arkansas Children’s Hospital, and immediately made appointments with the Ear, Nose and Throat Clinic to see if they could help solve Oliver’s mystery illnesses.
“The doctor said when he walked down that hallway he could hear Oliver breathing and knew what was going on before he even walked in the door. So the first day, he wanted to book him for surgery ASAP. His larynx was closing off his airway, which is known as laryngomalacia.”
Though the surgery was a success, Oliver was still refluxing and turning blue. He’d already had swallow studies and upper gastrointestinal tests at their previous hospital, but the doctor decided to try again.
“This time, they found that he was definitely refluxing and needed to be on a thickener, but he was refluxing into his lungs. They also noticed he had intestinal malrotation. So we were back in the OR.”
Doctors still haven’t determined if Oliver’s medical issues, which also includes a chronic lung disease that often requires him to wear an oxygen concentrator, are due to prematurity or are part of an unidentified syndrome. Yet, Maureen is overjoyed with his progress. “Oliver’s one of those kids, where you say, ‘You shouldn’t be able to do this,’ or ‘he’ll never be able to do this.’ And then you turn around and he’s doing it. He’s awesome. He blows my mind every day.”
The Exceptional Families program not only helped with Oliver’s medical successes, but also with Maureen’s support network. In her old town, her children stopped receiving invitations to parties due to Keegan’s autism. “It is emotional for me, because I hated feeling like an outsider,” Maureen says. “I don’t want that for him in his life, either. Then we came here and we got into EFMP, and now I have some of the best friends that I could ever ask for. And now he has friends. We make dates and we go to the park. And no one is judging you and no one is staring at you. They get it.”
Now, Maureen says, “things are falling in place.” Her boys are thriving: Aiden is the family comedian, Keegan has an imagination that is “out of this world,” and “Ollie is headstrong,” she says. “It drives me insane, but I love it about him because it’s helped him get to where he is.”