Meet The Head Family

Adam, Lindsey, Cadence, Cael and Lincoln

BY LISA DEFILIPPO; PHOTOS BY 21VINES PHOTOGRAPHY

Meet the heads of the Head Family — Adam and Lindsay, their adorable kids Cadence, 17, Cael, 14, Lincoln, 8, and their therapy dog, English labrador retriever Atlas, 5.

Adam is a veteran of the United States Navy and a registered nurse at the Roudebush VA Medical Center in Indianapolis. Lindsay is co-owner of Therapy Redefined, located in Carmel, IN, which the family now calls home.

“We both grew up in Carmel but have lived in various parts of the country due to Adam’s Navy career,” explained Lindsay. “Cadence was born in Florida, Cael was born in Wisconsin, and after Adam’s time in the Navy was up, we wanted to return home to Indiana, so Lincoln was born here. We often joke with new people we meet that every time we moved to a new state, we had a baby!”

The move back home to family and friends in 2009 proved to be exactly what the young family would need. Adam and Lindsay learned at the 20-week ultrasound that their little Hoosier, Lincoln, had a heart condition. It was recommended that the couple get genetic testing since many significant heart defects are linked to genetic syndromes.

“Adam and I were so overwhelmed with the heart condition we could not even think about genetic testing. It would not have changed our plan anyway,” said Lindsay. “I kept saying it does not matter because we are staying the course.”

“During his first year, he had massive gastrointestinal (GI) issues that were finally corrected at age 14 months,” she continued. “Finally, around this time, the dust was starting to settle, and we had the bandwidth to think about genetics, so we agreed to the FISH test [a blood test that measures genetic changes in cells].”

While visiting her best friend in Wisconsin, Lindsay remembers getting the call from Riley Genetics, expecting to hear an automated appointment reminder, but instead receiving the news that they had found a diagnosis — a list of unknown medical terms Lindsay scrawled shakily on a nearby napkin.

“She said it was called DiGeorge Syndrome, also known as Velo Cardio Facial Syndrome, or 22q,” Lindsay said. “We were given zero information on 22q, no resources, no support groups, nothing; and to top it off, there are very few doctors who know how to really care for these patients. Thankfully, I’m not one who takes ‘no’ for an answer.”

Armed with her napkin and a syndrome that went by three different names, Lindsay set out to find out as much as she could about 22q.

“22q is a syndrome, which means there is a spectrum,” Lindsay explained. “22q can be the cause of nearly 200 mild to serious health and developmental issues in children and is believed to be the second most common genetic disorder behind Down syndrome — yet most have never heard of it! Because each person diagnosed with 22q presents a unique set of the possible 180+ symptoms, it is difficult for even the best doctors to recognize.”

Lincoln’s first several years of life were very medically complex, Lindsay said, and he was often in the hospital for testing or surgeries. Later diagnosed with VPI, or velopharyngeal insufficiency, Lincoln has nasal reflux, which caused repeat sinus/eye/ear infections and aspirations during his first 24 months of life. He also had a tethered cord release just before his second birthday, which is a procedure to separate the spinal cord from abnormal tissue that limits its movement within the spinal column.

“Medical trauma not only affects the patient but each member of the family as well. Isolation due to the rarity and complexity of the syndrome has affected our entire family,” said Lindsay. “Trying to balance keeping him healthy while raising two older children who needed us at the same time, but in different ways, proved extremely challenging. Having to look at your 7- and 10-year-old children and try to explain why we can’t have friends over, or why we can’t go places or just go out and do ‘normal’ kid things because of the health risks it would impose on Lincoln, was exhausting.”

The lack of information was also exhausting, but thankfully Lindsay was able to track down two amazing support groups: About Special Kids (ASK), which helped the family answer insurance and waiver information, and one particular group of moms who soon became her tribe — the 22q Family Foundation. Lindsay has been able to connect with 36 different moms who also have children of various ages and two in particular who have children close to Lincoln’s age, from across the country and internationally, to learn what has worked or hasn’t worked for other families on this journey. Lindsay now works closely with the 22q Family Foundation to find other local 22q families and help inform them about what resources they have available to them.

“Isolation is the silent killer of families with special needs, and most of the world has no idea,” Is by Kate Swenson, author of Forever Boy, and the popular blog Finding Cooper’s Voice “This situation is extremely isolating, and when you are in the trenches, you can feel like you’re on an island alone. My advice to anyone who finds themselves in a similar situation is to always ask questions, never stop advocating, go with your gut and look for parent support groups — even if you can [only] find a group for families of children with medically complex conditions or a local special needs group, you need to find your people and build your support group.”

Thankfully Lincoln’s medical issues are slowing as he gets older, so the Heads are on to a new phase of their 22q journey. “Lincoln has to work extremely hard for everything he does,” said Lindsay. “For example, keeping his focus on the task at hand is tough; he has low tone and fine and large motor difficulties that make everything — handwriting, sitting on the floor, motor planning — much harder, and that can be exhausting.”

Lincoln was a very late talker (four years nonverbal), which is very common with 22q. “I will never forget the first time he was able to tell us, ‘I love you,’ or tell us his friends’ names at school without the teacher having to tell us first,” said Lindsay. “Now, he literally never stops talking!”

“The fact is that Lincoln has faced more life challenges in his short eight years than most people face in their adult life, and yet every day he continues to find joy and a way to make other people laugh,” shared Lindsay. “He often leaves us in awe. He is teaching us how to work hard, never give up and keep a positive attitude. And because of the challenges we have had to face as a family, our older two children are some of the most accepting, compassionate and caring teenagers you will find,” she gushed. “Everyone who is involved with Lincoln is a better person because of him. He is pure joy, loves to give hugs, loves to tell jokes. The world is a better place because of the uniqueness he brings.”

Lindsay says their focus is now on school, therapies and making sure Lincoln has what he needs to succeed, which comes with a new set of challenges, “but our support system is much bigger than it was when he was born!” Lindsay and her family now find themselves in a place where they feel supported and heard — a mission statement

Lindsay now uses in Therapy Redefined, a pediatric therapy center she co-founded after discovering there weren’t enough resources for Lincoln.

“There is no better satisfaction than seeing a child come in with areas of weakness and leave crushing their goals, with great selfesteem, and knowing they have the tools to conquer any obstacle that they will encounter,” said Lindsay. “Our clients are not just patients, they are family, and we are so lucky to have the best and most genuine families to serve.”

GET TO KNOW THE HEAD FAMILY: Cadence is a cheerleader for Westfield High School and wants to become a veterinarian.

Cael is a multi-sport athlete at University High School and loves to fish.

Lincoln is a first grader at Towne Meadow Elementary, where he loves playing with friends, trying new sports and meeting new people. Lincoln absolutely loves cars both Hot Wheels and the real thing. He can look at a car symbol and tell you who the maker is. Lincoln would love to be a racecar driver when he is older.

“Our family loves the ocean; this is a place our entire family can rest and recharge. We have adapted what we do when we travel to meet Lincoln’s needs while still entertaining his siblings and spending time as a family. We worked a lot on swimming this summer in preparation for a big beach vacation that we will go on over winter break. We are hoping Lincoln will be able to snorkel with the family, which would be huge! Even if his ‘snorkeling’ will be just watching the fish from above the water while swimming.

Lincoln is always up for an adventure. If he is big enough to do what his siblings are doing, he does NOT want to be left out. He likes to pretend he is just as old as they are especially when it comes to things like playing laser tag, arcade games, bowling and parties.

Adam is a Chicago Bears fan since he grew up in a suburb of Chicago. Lindsay loves to watch any sport that the kids are involved in.

Lindsay is part of a newly formed parent group for any parent who has a child with an IEP in Carmel schools. Lindsay’s business, Therapy Redefined, plays a very active role in the community, providing services and advocating for their clients.

Cincinnati Children’s Hospital has been and still is a big part of Lincoln’s care.

So much of your life is spent listening to a variety of professionals tell you what your child can’t do IEP meetings, doctors, therapists, etc. Don’t forget to take time and focus on the positives and what your child can do and does well.

Find your people and love them well.