“I’m interested in that thing that happens where there’s a breaking point for some people and not for others. You go through such hardship, things that are almost impossibly difficult, and there’s no sign that it’s going to get any better, and that’s the point when people quit… But some don’t.”
Robert Redford
When watching families interact with the horses and staff at Champ’s Heart, it is obvious that they are having a wonderful time. We see some children laughing, talking, and playing. Other children are riding or painting their masterpieces on horses. Even more children are having pony races in the far corner, or simply spending quiet time as they brush and braid their favorite equine’s hair.
But look just a little deeper and you might see how the same children are receiving desperately needed emotional and physical respite from the overwhelming obligations faced by special needs families. It’s the circumstances behind the obvious that most of us wouldn’t see. What would be missing from this beautiful picture of laughing, joyful children are the challenges, struggles and sometimes heartbreaking events that these families face behind the scenes. It’s these back stories that help us understand that programs like Champ’s Heart are not only venues of feel-good experiences; they are an essential element in the health, happiness and resiliency of special needs families.
Rick and Kailey, and their two children, Ellery and Ewan, are one of the families with an incredible and inspiring backstory, and they were one of the first families Larry thought of when he began inviting children to Champ’s Heart. They are examples of those people who never quit, no matter how tough the going. This is a family who faces their obstacles head-on, and still finds ways to be grateful for the blessings in their lives. They believe that Champ’s Heart is one of those blessings.
Larry had married Rick and Kailey and before he retired, they were regular members of his congregation. Larry was part of their support system when Ellery and Ewan were born, so he knew first-hand how much Rick and Kailey had on their parental plate.
Both nine-year-old Ellery and six-year-old Ewan entered the world in crisis. Ellery was born septic and was 15 weeks premature. She spent the first three months of her life in neonatal intensive care while Rick and Kailey held daily vigil.
Kailey: “She was so small! Her eyes were glued shut and she had no nipples or fingernails. You could literally see through her chest and watch the chambers of her heart beating. We couldn’t even touch her because her skin was so thin that it would tear. We saw a lot of babies die in the neonatal unit. And every day, we held vigil, not knowing if Ellery would live or die, and every day new issues would come up. It was just so constant. But through it all, she kept living.”
But at two weeks old, Ellery contracted pneumonia and was diagnosed with severe brain damage.
Kailey: “At that point, the doctors told us to just let her go– to pull life support. They said that, if we didn’t, she would be wheelchair bound, would never walk or talk and basically be non-functioning.”
The doctors, believing that there was no chance for Ellery to live a functional life, must have believed that they were giving the family their best advice. But something told Rick and Kailey that, despite the dark prognosis, they had to give Ellery every chance at life.
They spent the next few months moving from one crisis to the next, and even after bringing Ellery home, they continued to experience one traumatic event after another. The daily stress of caring for a critically ill child with an uncertain outcome, had left Rick and Kailey emotionally and physically exhausted.
Kailey: “Even now, I will experience moments of panic when she’s sleeping, and I go in to check on her. My heart will start racing and I will flashback to images of her not breathing. Our entire family got Covid this year and it was terrifying to watch her go through that. There are just so many things going on with her that it seems as if we are worrying all the time. It’s really incredibly stressful.”
After a few years of back-to-back crises, it seemed that Ellery was finally beginning to make progress. But respite wasn’t in the cards quite yet because just as Rick and Kailey were beginning to gain their footing, Ewan made his entrance into the family. Despite the chaos they had lived through (or maybe because of it) Rick and Kailey were excited about the promise that having a second child would bring.
They hoped that Ewan would give them the chance to experience what it felt like to parent a child without disabilities. Kailey was still dreaming of the joy she would feel when she was able to hold her newborn in her arms, instead of watching in anguish, as she had done when doctors scrambled to save Ellery’s life.
Rick and Kailey craved a ‘normal’ experience, in which every day was filled with joy and expectation, and she hoped that Ewan’s birth would give her the ultimate fulfillment of bringing a happy, healthy child into the world.
Unfortunately, Kailey developed pre-eclampsia and Ewan’s birth was premature and traumatic. Kailey and Rick’s hearts sank as they learned that he had aspirated amniotic fluid and was not breathing. His APGAR scores were even lower than Ellery’s had been, and they knew at that moment that their beautiful little boy was going to struggle. And, just as Ellery had been, Ewan was whisked away to neonatal intensive care minutes after being delivered.
Rick: “We were expecting a quasi-normal experience, but I had to walk away and leave my wife to go watch another baby struggle to survive. And that sucks.
It was terrible for me because I had to leave Kailey, just like I had to leave her the first time. When she had Ellery, Kailey was hemorrhaging so bad that I didn’t know if she would live but I had to leave her to be with the baby. I had to watch them as they resuscitated Ellery, and there were doctors everywhere trying to get her to breathe.”
Ellery was ultimately diagnosed with Cerebral Palsy, Autism and ADHD and Ewan was diagnosed with Deficits in Attention, Motor Control and Perception (DAMP Syndrome), Apraxia, Dyspraxia, and ADHD. Most recently, doctors suspect that he may also fall under the diagnosis of a mild cerebral palsy.
The traumatic entry that Ellery and Ewan made into the world quickly evolved into what must have seemed like a never-ending quest for Rick and Kailey; a commitment dedicated to helping their children navigate in a world that can, at times, seem blind to their needs and sensitivities.
Kailey: “I think one of the hardest things is that Ellery and Ewan each have such specialized needs and they are both very dependent on us. Rick works in the desert at a nuclear facility, and he has long days. So that means it’s just me a lot of times, and they both need so much of my attention that it feels like I’m being pulled in all directions.”
Despite all their initial struggles and challenging diagnoses, Ellery and Ewan are doing better than expected. Ellery, who was labeled as hopeless, has done remarkably well. Today, she is functioning at the higher end of the Autism spectrum and, at first glance, might look like any other child. But even when Autistic children are considered high functioning, they can exhibit a range of sometimes debilitating sensitivities and behaviors. Many have difficulty with social interactions and adjusting to change and may be emotionally over-sensitive. They may fixate on ideas, exhibit odd verbal patterns, or exclude others in favor of focusing on themselves.
Kailey: “She is really pretty functional. But she does have a massive number of sensory issues across the board, as well as the social components. And everything seems to bring up anxiety for her.”
While Ellery can perceive how her physical limitations differentiate her from others, she is less aware of the emotional/behavioral components associated with ADHD and autism or how her behaviors affect her life in the big picture. According to an article in The Frontiers in Psychology Journal (Aug 22,2017) children with Autism “don’t know what they don’t know.” This lack of self-perception can make it hard for them to know when their behavior needs to change. They also often lack the ability to tell the difference between their own wants, needs and emotions, and someone else’s.
Kailey: “We are probably more aware of her autism and her ADHD behaviors than she is because she doesn’t understand how to make or keep friends and doesn’t have any friends outside of school. She’s in fourth grade now and it’s the time when kids are typically getting best friends and are involved with groups of friends. She seems to have a new ‘best friend’ every day, but no close or lasting relationships.
She tries to make friends, but it just never works. I’m going to guess that she often doesn’t know why it’s not working. I don’t think that she can look back and say, “Well, if I did this differently, or if I didn’t do that…” Because of that, she repeats her same behaviors over and over.
We enrolled her in therapy because of her inability to hold a normal conversation. If it’s not a rehearsed script, such as ‘hi, how are you’ or ‘nice to meet you’, she can’t hold a conversation. The only exception to that is if it’s something she initiates. If it’s something that she’s interested in, she can talk all day. But she only talks at you; it’s never back and forth.”
Despite the issues that Ellery battles every day, she brings an immense amount of joy to the household. Not a day goes by that Rick and Kailey aren’t reminded of just how grateful they are to have her.
Kailey: “In some ways, Ellery is my hero. She is so resilient…she’s a tough kid. I can appreciate some of what she goes through because I have MS and it creates a lot of spasticity in my legs. It makes me understand what she’s dealing with related to her own muscle spasms. But I often think about how she just takes it in stride. Oh, now and then, she’ll complain that her legs hurt or something. But for the most part, you don’t really hear much from her. And now that I know what it feels like, I’m even more impressed that she doesn’t say anything, you know?”
And she’s hilarious. I mean, she really has such a funny sense of humor. And she can be the life of the party in her own way, and maybe that’s why everybody at her school adores her. She really cracks me up with some of the stuff she comes up with. She’s a talented artist and some of the stuff she draws just amazes me.
I have a special memory of her when she was little. She used to talk about how she had spent time with Jesus. And that’s not something we ever coached her to say. It was kind of bone chilling, but in a good way. She would talk about experiences she had with Him, like hugging Him, for instance. And there were a lot of other little things she would mention. Now that she’s older, she doesn’t talk about it as much, but when she was little and she would go to church to learn about God and Jesus, she talked a lot about how she had already met him.’
While there is some overlap in the diagnoses for Ellery and Ewan, each child has their own way of expressing the behaviors associated with them. Therefore, Rick and Kailey need to delve into a different bag of tricks to help Ewan through some of his behaviors.
Kailey: “Ewan’s got a lot of fine motor issues, and at age six, he still can’t write properly because he doesn’t have a dominant hand. He just keeps switching back and forth. He has some mild gross motor deficits too. It’s not too bad, but enough that it’s obvious that he’s not at the same level as his peers. And he fatigues quickly. If he’s running or walking or doing anything that is physically demanding, he’ll start complaining that his legs hurt. He just tires out faster than a normal kid. But at the same time, he has the ADHD kicking in and he is very hyperactive. If there’s a day that he doesn’t have his medication, I feel like pulling my hair out. I just want to tell him, “Oh my gosh, just sit down and stop moving!”
But just like Ellery, Ewan brings immense joy to Rick and Kailey and they have no idea what they would do without him in their lives.
Kailey: “Ewan can have some pretty whopper fits and temper tantrums and he can get violent. But underneath all that, he is the sweetest, most thoughtful kid and he always wants to cuddle. He tells us how much he loves us, and I remember him telling me how pretty I looked on my birthday. He bought me some jewelry and some shoes and every time I wear them, he makes sure he goes out of his way to tell me how pretty it is. He’s always thinking about how to make you feel good. For instance, when we all got COVID he was the only one that had no symptoms. And he was taking care of all of us. He would say, “Can I get your plate,” after we’d eat dinner or, “Mommy, let me get you a blanket and tuck you in.” He was just so thoughtful and so sweet. And he’s funny. Not like funny, ha ha but funny in how he can be at two extremes. Like I said, he can be very impulsive and can throw some fits. He tends to act first and think later. But on the inside is this sweet, sweet boy that is so caring. He’s the kid who can punch you in the face in one moment and refuse to go to bed until he’s gotten a hug and kiss from everybody. Yeah, that’s Ewan.”
Rick and Kailey are in a situation that would leave most parents gasping for air, and even though they do occasionally need to remember to breathe, they seem to have things under control. Finding opportunities for respite can be a challenge of its own; but this couple has found ways to creatively insert moments of distraction that help them stay centered and focused.
Even though they have gotten fairly good at building respite time into their lives, they often feel isolated and alone in their efforts. Having two children with high needs has left them short on support from family and friends. Whether it stems from fear or judgement, there isn’t anyone in their inner circle that Rick and Kailey can regularly count on for support.
Kailey: “It’s hard, because I feel like we don’t get to go on ‘dates’ like other couples do. We just never get to do that kind of stuff.”
In short, if a family ever needed a program like Champ’s Heart, it would be this one. It’s no wonder that Rick and Kailey were ecstatic when they got the call from Larry, inviting them to visit.
Kailey: “Having the kids interact with horses had been on my radar for a while. A long time ago, before we started going to Champ’s Heart, Ellery’s doctor told us to get into Hippotherapy. But we couldn’t find somebody who could accommodate our schedule. So, when Larry called us, I was excited because I already kind of knew what a lot of the benefits were, especially for a kid with cerebral palsy.”
Although Kailey and Rick knew that children with special needs could benefit physically, neither of them expected the wide range of benefits that began to emerge for their children.
Kailey: “Both of the kids had ridden before because we were friends with their occupational therapist. She had horses and had invited us over to do OT activities on horseback. When we started going to Champ’s Heart, she came out, on a volunteer basis, a couple of times and worked with different kids. She gave us some exercises to do on horseback when she’s not there and we’ve noticed an improvement in their balance. Each time they ride, we notice that their balance will be better for the entire week. Their hips are looser and there are lots of little physical things that we notice.
It also definitely has a calming effect for both of them. One of the best things is that we don’t have to fight with them to go because they really look forward to it. That is a huge thing because a lot of times, going to traditional therapy can be a big fight. They just don’t want to go, you know?
Ellery gets frustrated because she has speech therapy twice a week, occupational therapy, physical therapy, and counseling. That’s a lot for a nine-year-old and she understandably gets frustrated. She often asks us, “Why do I have to do these things and my friends don’t?” It’s hard to explain to her that we’re trying to help her move forward because she doesn’t see it that way. She just sees it as torture in a way because they are making her do hard things. It’s almost like she sees it as a punishment or something that is unfair or unjust.”
Rick and Kailey had finally found a place that Ellery and Ewan loved to go and that was helping them at the same time. And just like many other parents, Kailey began to realize that there were benefits for her as well.
Kailey: “There were a lot of times that I would actually ride myself. I would put one of the kids in front and we would just go ride. And I admit that I saw physical benefits for myself as well. The MS can cause numbness in my legs and I often feel numb from the waist down. But after riding, I notice that it is a bit better and my balance is better too.”
Champ’s Heart is such a welcoming environment. Larry genuinely cares about every kid that comes to his program. He is invested in their wellbeing and he is invested in you as a family. He wants you to have the best experience and the fact that it’s all provided at no cost still amazes me.”
Champ’s Heart is unique because no one pays to spend time with the horses. Even before Larry formally converted the program into a non-profit organization, he refused to accept a dime from anyone who needed his services. In fact, money is never mentioned at Champ’s Heart and Larry has no idea whether the families who attend would be able to pay or not. It simply isn’t on his radar. And, unlike many traditional programs, families are never turned away because they don’t meet the criteria for assistance.
Kailey: “That’s one of the biggest things. We do a lot of traditional therapy and it starts to look like it’s just a business, you know? For instance, they might cancel all our appointments without notice because they find out that insurance isn’t going to pay. And I understand that, but from the kid’s point of view, they don’t understand.
And then you have somebody like Larry, who’s doing it purely out of the kindness of his heart, and the love for children. It is refreshing and heartwarming and gives you faith in humanity.
There were times when we would have to cancel because I wasn’t feeling well, and Larry would always check on me to make sure everything was okay. He wanted to make sure we were taken care of and to see if there was anything he could do to help. That was amazing.”
As parents, Rick and Kailey deal with stress and chaos daily, and Ellery and Ewan are subjected to a schedule that is full of obligations and sometimes painful treatments. Without the nonjudgmental, caring environment at Champ’s Heart, it would likely be difficult for them to find a place where they experience freedom from rules, expectations, and the demands of everyday life.
Thanks to Champ’s Heart, this is a family who has found a place to experience respite and joy, and to feel the physical and emotional benefits that come from simply spending time with this healing family of horses.