Meet the Howell Family

Rob, Meredith, Lola and Sebastian

Photos by 21Vines Photography

What are your family members’ names and children’s ages? Where do your children go to school, and does/ do your special needs child/children attend school and/or receive other educational/behavioral services? If you have a special needs adult living at home, are they employed or attending a special services program? Lola (11) attends Kitley Intermediate, which is in Franklin Township on the southeast side of Indy. She is in the fourth grade and takes part in an essential skills class. Thankfully, Franklin Township has been very supportive of Lola’s educational needs. In addition to the support she receives in the classroom, she receives blind/ low vision services, orientation and mobility instruction, speech therapy, and occupational therapy. She hasn’t been in school for very long as she was enrolled in Applied Behavior Analysis (ABA) therapy for several years. The transition into school has been really positive, though, and I’m proud of how well she’s done.

My son, Sebastian (8), is in the second-grade REACH class at South Creek Elementary, also in Franklin Township. Last year both of my kids attended Adams Elementary, and I was pleased to see how accommodating they were to my kids and their needs. Here I had Lola, who was the oldest child in the school, with perhaps the most significant learning needs, and they could provide great instruction to her. Then I had Sebastian, who was at the top of his class academically – needing additional challenges for an enriching school experience – and they provided that, too. I feel lucky that our school experience has been so positive thus far.

Do you have pets or service animals? Tell us a little about them. We have two dogs, Gidget, a Boston terrier, and Dude, a rescue Lab mix from Indianapolis Animal Care Services. We decided we needed a Covid puppy, so we brought Gidget into our home. Shortly after, we adopted Dude, who is just a puppy. It’s been nothing but chaos, but my kids, especially Lola, love both dogs. Dude is a big lover, and Lola needed an animal like that in her life. She can lay all over him, and he welcomes it. He calms her, too. We also have a 250-gallon fish tank that came with our home, so we have fish as well.

Where are you and your family originally from? I’m originally from Battle Creek, MI. I moved to Indianapolis after I graduated from college. My husband is from the southern part of the state. We lived in Costa Rica (where Lola was born) for three years, then came back to Indianapolis once we realized the extent of Lola’s health challenges.

Where do you live in Indiana? How long have you lived here? What brought you to Indiana? We live in Franklin Township, which is on the southeast side of Indianapolis. We have lived in our home for about a year and a half.

I was living in Kalamazoo, MI, when I graduated from college. My mom brought me to Indianapolis for a girls’ weekend, and I loved it. I moved here a month later without really knowing anyone, and that was about 17 years ago. It’s been a good experience living in Indy though I miss the water that Michigan provided. As I mentioned, Rob and I moved to Costa Rica for three years. We ran a medical recovery retreat for people recovering from surgery. My parents owned a bed and breakfast right next door, so that’s why we moved there. We enjoyed our time in Costa Rica and eventually started our family there. Lola was born in January 2011. She began having seizures when she was 4 months old (infantile spasms) and was diagnosed with cortical visual impairment at 7 months of age. Just before she turned a year old, we made the decision to come back to Indianapolis. We knew she would need medical care and therapies, and we didn’t know if Costa Rica could provide that level of care. So we had to start all over when we moved back. Rob stayed home with Lola so she could get all of the therapies she needed, and I started working. We’ve been back in Indy for about 10 years now. It was a whirlwind experience!

I Would Suggest For Parents Continue To Follow Their Instincts And Advocate For What Their Child Needs

What have been some of the challenges you/your family have experienced, and how have you overcome some of these struggles? One of our biggest challenges was getting a diagnosis for Lola. We went to countless doctors, hospitals and specialists and subjected her to numerous tests, all to lead us to what we had known for years – Lola was having seizures. Sure, they looked different than most seizures, but I knew in my gut that’s what was happening to Lola and I just didn’t feel heard. But we kept on, knowing that a correct diagnosis could make a huge difference in the quality of Lola’s life, and finally, we ended up at the Cleveland Clinic. After a five-day EEG, she finally had a seizure that was detected, and we had the answer we were looking for.

She was diagnosed with occipital lobe epilepsy, but underlying that was a rare condition caused by a genetic mutation (more on that below).

It was a long several years of searching for answers, and it was frustrating not to feel listened to. I know I’m not alone. I work for Visually Impaired Preschool Services (VIPS Indiana), and I can’t tell you how many stories I’ve heard where parents say something is wrong with their child’s vision, and the doctors shrug it off. We need to build a healthcare system where parents are listened to, and their concerns are validated.

We’ve also had struggles with insurance companies covering Lola’s therapies. We had to fight to receive coverage for the ABA therapies that were greatly improving her quality of life. It was exhausting to battle the insurance company, but we were successful in getting her the services she needed.

Any advice you have for others who are experiencing similar situations and challenges? I would suggest for parents continue to follow their instincts and advocate for what their child needs. If you don’t speak up, no one will be the voice for your child. It’s okay to hold doctors, therapists, teachers, and anyone else involved in your child’s life accountable!

What are some happy memories that really stay with you? Were there milestones or accomplishments that you/your child hit that you never thought would be possible? One milestone that sticks out is when she started walking. She was 3 years old before she became stable enough to walk, and she worked so hard at it. So to see her achieve this milestone was amazing. Now we can’t keep up with her – we need her to slow down a bit! Also, I would say hearing her talk. I remember asking one of her teachers if she thought Lola would ever talk, and she said yes, that Lola would talk someday. ABA therapy really helped pull language out of Lola. At the age of 11, you would never know that she had little to no language just a few short years ago. Her language has just blossomed, and it has really helped with problem behaviors we were having. She’s happier now that she can articulate most of her wants and needs. It’s been so cool to hear, and I take none of her language for granted!

What are your profession(s), and where do you work? My husband, Rob, is the e-commerce product manager for Trends International, and I am the regional director for Visually Impaired Preschool Services (VIPS Indiana). I got into the line of work that I’m in because our family was served by VIPS from 2012-2014. It was such a life-changing experience that I was inspired to do more with the agency. I started out as a volunteer, got hired in 2014 as the part-time family services coordinator then worked my way up to the regional director position. I love my job and its flexibility. It is a family-first organization, and they understand the needs that come with the complexity of our life with Lola. I feel so lucky to be able to wake up every day and do what I do.

If you have children or a special needs adult still at home, what activities are they involved in? Lola participated in an adaptive soccer program, but she didn’t take to it like we thought she would. She just wanted to score goals – not really follow the rules of the game! But in a pre-Covid world, she enrolled in activities through the Joseph Maley Foundation. We especially loved their swimming program. This summer, both Lola and Sebastian went to the Jameson Camp. We were excited to see how much they both enjoyed it. This was her first year attending.

Do you have any family traditions? A lot of our family traditions are like everyone else’s. We do a lot at Christmas time with baking cookies, making gingerbread houses, and trying to keep the magic of Santa alive.

Activities/Hobbies: We love to find new playgrounds that are accessible in the city and surrounding areas! We like to take the dogs to the dog park, go to trampoline parks, play video games as a family (Fruit Ninja is especially fun!), and go to my parent’s pool in the summer. Lola really loves to do all of the same things that Sebastian likes to do. She learns a lot from him.

Restaurants and Food Markets: We don’t go out to eat a lot because restaurants can be overwhelming for Lola. She loves food, though, so we do a lot of fun takeout like Indian food from Mela, Chinese food from Egg Roll #1, and she loves burgers from just about anywhere!

Park/Play Area/Hang Out: What are some of the experiences you enjoy doing the most with your family? What can be challenging when going places? The world can be extremely overwhelming for Lola, so we take it one day at a time. There are so many things that come into play when we decide to go out for experiences as a family. Things that can influence our decision are whether Lola’s had a seizure the night before, what her mood is like, and how busy a place may be. It used to bog me down to go through the checklist of things to ensure a successful outing, but I’ve learned that I can’t control everything, and the outing will be what it will be. We recently acquired a wheelchair for Lola as she easily fatigues in public, so that has been helpful!

Vacation Destination: Vacation ... what’s that? Ha! Actually, Covid has made us stay put like most everyone, so there isn’t as much social pressure to be “out.” What I’ve learned is to lean into the things that Lola would enjoy and not put unrealistic expectations on her. We do love going up to Michigan to visit family and friends.

Sports Teams: We are big hockey fans, and we especially love the Washington Capitals. Lola recently got a Washington Capitals jersey, and if she had the choice, she would never take it off. It’s really sweet.

Music: I love music! I’m especially an indie rock fan and find most of the new music that I listen to on the SiriusXMU station in my van. Lola loves Queen and the song, “We Will Rock You.” In fact, she’s singing it as I type.

TV Show/Movie: We are watching Ozark right now. Obviously not kid-friendly, but we need adult things in our life, too. Lola especially loves watching people slipping on ice and America’s Funniest Home Videos.

Family dinner: Like a lot of families, we love Friday family pizza night! We like to try new pizza places but especially love Futuro.