Lily’s Story

However, it’s what we don’t see at first glance that sets Lily apart. We can’t see what goes on in Lily’s brain that causes her to be impulsive and struggle to concentrate.  We can’t see the neural pathways that are slow to develop and connect, causing her to feel disorganized. And we have no idea that she struggles with decision-making, learning, distraction and impulsivity. 

Behind the scenes, these biological processes, and the everyday battles she faces, cause Lily to feel out of control, anxious and depressed.  We would never know by looking at her that Lily feels battle-worn, and that her constant quest for normalcy has left her with a chronically low self-esteem.  

Lily was diagnosed with ADHD at the age of eight; a disorder she has in common with 6.1 million other American children and roughly five percent of the world’s population. (1) While there is a common set of symptoms associated with ADHD, the severity and expression of them varies from child to child. 

ADHD is difficult to accurately diagnose before the age of about six, when a child enters school, and their behavior can be assessed across environments. But that doesn’t mean that ADHD-like behaviors and medical conditions associated with the diagnosis, can’t show up well before then. One medical condition that has been repeatedly linked to ADHD, hyperactivity, and learning disabilities, is the chronic ear infection.  (2)

Lily was one of those children who suffered with chronic ear infections that began before her first birthday.  And her first infection was only the prelude to an ongoing ordeal that was littered with multiple complications, failed treatments, and unsuccessful surgeries. 

Her parents, Brad and Michelle, had no way of knowing that these ear infections would plague Lily for the first five years of her life.  Nor could they predict that they might be a precursor to a diagnosis of ADHD.  It was also beyond their scope of imagination to think that, while trying to treat her infections, they would be faced with the onset of challenging oppositional behaviors. 

Michelle: “She was constantly on antibiotics, and she hated it. She wouldn’t sleep and she cried all the time because she was in constant pain. It was a fight that whole first year. We would have to hold her down to give her the antibiotics and then she’d spit them out. The problem was that Lily was very strong willed and she didn’t want anything to do with any of it. When she was 15 months, we decided to have tubes put in her ears, but she continued to have ear infections and that was a difficult experience for her. And then there was the permanent hole in her ear that resulted in more failed surgeries and finally a total eardrum replacement.”

It’s no wonder that Lily felt anxious and out of control most of the time.  Like most other children who experience anxiety, Lily searched for ways to lessen her discomfort.  She likely found that when she could control something, she felt less anxious. And just like other children who stumble across this reality, her need for control grew and developed into a set of challenging behaviors. 

Over time, Lily’s ADHD behaviors also became more apparent and seemed to inflame the uncooperative interactions she had with her parents.  She not only refused her medications, she refused to engage in treatment of any kind.  Brad and Michelle were left feeling exhausted and frustrated.  And from Lily’s point of view, it might have seemed as if the only attention she got was negative. 

By the time that Lily turned seven years old, the family dynamics were rapidly spinning out of control. Despite Michelle and Brad’s best efforts, they were all too aware of the impact that their attention to Lily was having on the rest of the family.  

Michelle: “In hindsight, I can see that what she really wanted was somebody to give her some positive attention, but we have three other kids. Her behavior was embarrassing for them and it was frustrating for me. I was spending so much time with her, taking her to the doctor and getting her to take her medication. I really didn’t have much energy to give her the positive attention that I think she was desperately trying to get. There was just so much frustration, anger, and hurt, and a feeling of hopelessness going on in our family.

But then I think about Lily’s side of it. When it comes to her siblings, she must be thinking, “Why don’t you guys like me?”  “Why are you guys mean to me?” Then I think she tries to get negative attention from them by picking on them, which frustrates them even more and creates even more resentment. 

As a mother, I’m trying my very best, but sometimes I just don’t have the answers. And sometimes it’s so hard to know what to do. I feel bad for the other kids because I have to spend so much time trying to help Lily.”

Michelle and Brad wanted to be able to spend quality time with Lily and provide a normal family life for her.  They wanted to give her the positive attention that they knew she so desperately wanted but they felt as if they were running out of options.  The entire family was beginning to feel as if they were rooted in negativity.  They were exhausted, emotional, and beaten down.

Michelle: “I felt like we were just going backwards, so that’s when we finally decided that we needed some professional help because everything was just kind of falling apart.  Lily had refused to engage in play therapy, so as a last resort, I started taking her to see my counselor instead.  He had been part of an equine-assisted therapy program in the past, and after meeting with Lily he told us that we needed to get her on a horse. I remember him saying, “This little girl has had a loss of control in her life and anxiety about a lot of things. And I think it would be really good for her.”

“I would do anything to help Lily, so I reached out to a couple of horse people but both attempts fell through. People wouldn’t call me back or we’d go out once and never hear from them again. At that point, I kind of gave up on the idea because I thought, well, there’s just nothing like this available around here.

Even if we found something, there was also the issue of money. We were paying a lot for counseling, medication, and doctor visits, and we can’t forget the three other kids who needed things as well. I thought about riding lessons, but they can be expensive too.  I really wanted to get help for her, but I didn’t know how I would ever pay for it.”

Finding a free special needs program that is geographically accessible can be quite a challenge. So, for a while, Lily and her family continued their commitment to counseling and took one day at a time. 

But in May of 2019, everything changed.  Michelle had all but given up on the horse idea, when her friend called to tell her about somebody who had brought his horses to a local business just around the corner. 

Michelle: “My friend said, “You’ve got to bring your girls over here. They are giving horse and pony rides and there’s a cute little cart. You’ve just got to get over here and see this.” We went to check it out and that’s where I met Larry Cudmore.

I remember thinking, “That’s the guy from the newspaper article that I saw!” Lily and I hopped in his buggy and as we were riding, I told him our story and asked if he could help us. And he said, “Absolutely, that’s what we’re here for!” He said he would give us a call, but after being blown off a couple of times by other people, I wasn’t sure that it would turn into anything. But I really wanted this to work out because it seemed like an answer to our prayers.  Larry called me that very afternoon and set up an appointment with us and we’ve been going ever since.” 

Taking Lily to Champ’s Heart started out as something to bring a little joy into her life; a chance for her to take respite from the struggles that her issues caused. But it turned out that going to Champ’s Heart wasn’t only fun for Lily, it was helping her with some of her ADHD symptoms as well.

Michelle: “It’s funny because, when we first started going, I wasn’t even really thinking about the ADHD part of it. I just thought, I’ve got this kid who needs something positive. She wasn’t getting many opportunities to do something fun because of her behaviors. 

At first, I was concerned that she would act out and I didn’t know how we would handle a situation like that. But the amazing thing is that she has never engaged in any of the challenging behaviors when we are at Champ’s Heart.

When we went to the horses the first time, Lily had a great time. She talked, talked, talked the whole time she was on the horses. But then we got in the car and it was completely silent. I remember turning around to look at her in the backseat. I said, “Are you okay?”, and she said “ya, I’m fine.” Then, she was quiet the rest of the way home. I felt like I was in shock. She was so relaxed, and I realized that I never really got to see her that way. I just wanted to cry all the way home because I could feel that it had made such a big impact. I didn’t know how or why that was happening, but it totally chilled her out. And that had never really happened in her life before.” 

The program at Champ’s Heart was different than anything Lily had experienced in her lifetime; not just because it involved horses, but because, for the first time, Lily was in complete control.

Michelle: “Champ’s Heart came along at a time when we were at the end of our rope. I didn’t really know if it was going to work or if it was going to be beneficial for her. But overall, it has been an amazing thing for her. She’s been through a lot and having the opportunity to go to Champ’s Heart has really been a blessing for our family. 

I love that, when we get there, Larry says, “Well, what do you want to do today?”  He just lets her decide what she wants to do, and he does his best to make it happen. If she says that she wants to do something that’s not immediately available, Larry will say, “How about this for a little bit and then we’ll work on doing that?” But she is never forced to do anything.”

The children who visit Champ’s Heart are given a wide selection of things to do.  There are a variety of horses and ponies so that every child gets paired with an animal that is exactly right for their needs. On any given day, you are likely to see children, horses and volunteers playing games on horseback; games that were originally designed for fun but turned out to be therapeutic as well. 

If children don’t want to ride horses, they can groom them, lead them or paint on them. And if they are anxious around real horses, they can choose to use mechanical look-alikes or play non-horse related games.

Michelle: “Lily’s favorite thing to do at Champ’s Heart is to ride Slick, [a chestnut gelding with a squiggly shaped star on his forehead]. He will do whatever she wants him to do, and that’s perfect for Lily because she wants to be the boss. She loves to lead him around because she’s this tiny person controlling a big, powerful horse. She loves it.  There’s just something about being able to be the boss for an hour that fills her up.

She went through a little phase where all she wanted to do was brush. She wanted to brush the pony and braid its hair. It seemed as if doing that was really relaxing for her.”

Having periods of time in which she is the boss of her world is just what Lily needs.  It lessens her anxiety and helps to give her a sense of self-esteem and personal control.  But experiencing personal control isn’t the only benefit that Lily gets from this program.  She is also learning what it feels like to focus and relax, and it may be one of the few times that she gets to simply be who she is and experience total relaxation at the same time.

Lily and her family have finally found an outlet that has something for everyone who participates. Each person benefits in their own way from an environment that embraces respect for choice-driven activities and the child’s right to define what brings them joy.  Champ’s Heart is a no-questions-asked, judgement-free zone where kids, no matter what the reason is that brings them there, are simply free to be.

Michelle: “Lily is able-bodied and doesn’t appear to have any special needs. And when we are there, she is perfectly well-behaved, so it’s not obvious why we would be there. From the outside, she just looks like a regular, normal, healthy kid, and they don’t see all the emotional stuff going on, on the inside. But nobody ever asks us why we are there. There’s no judgment or anything like that. They just accept everybody and welcome us and let us enjoy being there. And I really appreciate that a lot. The only question I’ve ever gotten is “how did you hear about us?” or “How long have you been coming?” I would recommend it to anyone who is having a hard time.”

It seems that Champ’s Heart came into Lily’s life at just the right time. It brought she and her family an opportunity to take a break from the daily struggles and to share in something joyful and empowering. And something that was meant to simply bring respite, ended up helping Lily and her family to experience themselves in new ways. 

At last report, Lily has graduated from counseling and, although she still occasionally struggles behaviorally when she feels anxious, she often goes months without a serious episode. She still needs to work at managing her ADHD behaviors, especially when she is stressed or anxious, and it is likely that she will have some difficulties into adulthood.  The family continues to go to sessions at Champ’s Heart and Lily is thriving in this loving, accepting environment. 

References:

1. Center for Disease Control and Prevention (February 13, 2021). Data and Statistics About ADHD. https://www.cdc.gov/ncbddd/adhd/data.html

1. Medical Daily (February 12, 2021). ADHD Linked to Inner Ear Problems; Could Studying Poor Hearing Lead to New, Innovative ADHD Treatment? https://www.medicaldaily.com/adhd-linked-inner-ear-problems-could-studying-poor-hearing-lead-new-innovative-adhd-treatment-256539