“Autism means I miss what others catch and I catch what others miss.”
Author Unknown
Nine-year-old Conner McCormick is a happy, intelligent, sensitive, and generally easy-going child, who has definite opinions about how his world should function. Although Conner is a child who has challenges navigating his world, his mother, Emily, is constantly reminded that the beautiful things about him far outweigh the challenges.
Emily: “Conner just is who he is. I would say his disposition is just happy. He has a quick wit and incredible memorization skills related to things he’s interested in. He’s not shy at all and he’s friendly and good with strangers, That’s actually one thing I’m cautious about. And he’s got quite a sense of humor. He says that he’s a ‘pranking one’. He’ll go tickle my husband and say, “I prank!” But, you know, he’s really pleasant to be around most of the time.”
Conner’s challenges center around the diagnosis of mild to moderate Autism Spectrum Disorder (ASD). Children who have been diagnosed with ASD are often categorized as being emotionally restricted, rigid, and obsessive in their behaviors, activities, and interests. And although that definition does fit Conner’s situation, he is much more than that. The truth is that Conner, and many other people with autism care deeply and truly want to socially interact. They simply lack the ability to spontaneously develop empathic and socially connected behavior. (Lurie Center for Autism, 2020)
The other truth is that Conner, like every other person with autism, is unique. There simply is no such thing as a ‘one definition fits all’ in autism, and to assume so potentially does them a disservice. I believe that the ability of parents to make a positive difference in their child’s life depends partly upon the extent to which they can tap into his or her unique needs and sensitivities.
Emily knows that if she orders Conner’s world in the ways that serve him best, things go pretty smoothly most of the time. And, as you will see, she seems to be especially good at this. She pays close attention to Conner’s behaviors, needs and idiosyncrasies, and works tirelessly to develop strategies that will help him navigate his world with minimal stress.
Emily: “With Conner, I find the most success when life is predictable for him and I give him a heads up about how things are going to go. A lot of his day is just trying to set him up for success by preparing him for things that are coming… even if it’s positive things. For example, we usually go through the drive thru at the bank, but I needed to talk to them in person about canceling a check. I didn’t warn him ahead of time that we were going to go into the bank, and he got very upset because that’s not what we do. Had I told him ahead of time, it would have been fine, but I just didn’t think about it. I remember one time going to the grocery store. I said, ‘we’re not going to buy toys, you know. We can look down the aisles, but we’re not going to buy anything today.’ And then I noticed that there was this cute little clearance Thomas mini toy for 50 cents. And I said, Okay, that’s fine, we can pick that out and Clara (his sister) can get playdough. As we started to leave the toy isle, he says, ‘I have to put it back, I have to put it back’. And I said, ’Well, you can take it or it’s fine to put it back. But then as we started walking away, he said ‘I want it I want it.’ He was confused because I told him he couldn’t have it, but he wanted it. But (in his mind) he wasn’t supposed to have it.”
For many parents, it can sometimes be difficult to discern where a behavior is coming from. Is it a factor of ASD or a behavior that any other child might exhibit? Not knowing can sometimes make it hard to decide how to respond. But even more frustrating are the judgements, advice, and criticisms that come from well-intentioned bystanders.
Emily: “I remember getting to the checkout stand and he was still a little upset. I ended up telling him, ‘I’m not going to give it to you now. We’ll save it for a reward for good behavior later or something.’ He was upset and reaching for the toy and wanting to put it back in the cart. I knew he was just confused, but I remember the cashier saying, ‘Oh, you know, I wouldn’t get him a toy if he’s behaving like that.’ And I thought ‘Ooh, thank you for that opinion.’ But it probably appeared that I was spoiling my child who was acting like a brat. Yeah. So, it can be interesting, you know. I try not to use his autism as an excuse for his behavior, but rather an explanation. I remember one time, we were at Kid’s Town and they have Little Tykes ride along cars that the little kids can ride in. Conner’s not aggressive, but he likes to crash things. He loves to pretend to fall off his scooter and say, ‘Oh, I fell off. I got into an accident.’ He wasn’t aware that he was doing something dangerous, but there was a little girl riding in one of the Little Tikes cars and he tipped it over and she cried.
I apologized, and I was wondering if I should bring up that he’s on the spectrum, or if that just sounds like I’m making excuses. I try and still hold him accountable for his behavior, you know. He has to say he’s sorry, and not do it again. And if he continues it, then we leave.
I try to remember these times when I see other kids acting naughty and their parents are handling it in a different way than I would. Especially now that I have Conner, I try to remember that I don’t know their situation. I think I empathize a little bit more with them…kind of like ‘oh girl, I’ve been there. I understand.”
Conner also struggles with a deficit in communication skills, which is common among children on the spectrum. Initially, it was difficult for him to communicate what he needed, and as he gets older, it continues to be difficult for him to label and verbally articulate his feelings. And because he struggles with perspective, it can also be hard for Emily to know if what he is telling her about his experiences is factual.
Emily: “He was about three or three and a half before he started talking. I remember starting speech therapy through Idaho health and welfare program, when he was 18 months old, and they would come do in home visits. And then by the time he turned three, they helped us transition into doing it through the Katie Beckett program, which is a non-income-based Medicaid, essentially. I remember trying to get him to point at things because not being able to express what he wanted or needed was a big source of frustration for him. Words eventually started coming and then we worked on just building up his vocabulary through play. And now he can speak in sentences really well. He can say things like, Can I have a snack and play a video game?” which is huge. I wasn’t sure he would ever get to that point, and I remember thinking that if he could just say things like chocolate milk or something, it would be so cool.
He still has trouble with communicating and responding to communication. If someone says ‘hi Conner.’ sometimes he’ll say ‘hi’ and sometimes he won’t. I worry that others will perceive him as rude.
I would just like him to be able to tell me things that happened to him throughout the day. And be a little clearer about it.”
Conner also tends to fixate on things that are novel, particularly events that he finds interesting. According to an Autism blog published by The Seattle Children’s Hospital (Aug 28, 2017), “Individuals with autism tend to have brains that think about things over and over. They may fixate on things that they find enjoyable or may get “stuck” trying to finish a task or game. A brain affected by autism tends to be more rigid and “black and white”, so it is hard to be flexible with a number of interests and ways of thinking about things.”
Emily: “He will fixate on things that happened that are of interest to him, even if they happened a long time ago. One time, we brought our bikes to the park. He’s really good at anything physical, and he does an excellent job riding his bike and scooter. We set his bike down and his sister set her bike on top of his. He said, “I’m going to pull them apart.” The reflector that was on his bike got caught and broke in half, and he was so interested in that. Later, he told everyone who passed by that his reflector got broken. Still, every time we pull out his bike, he talks about his reflector being broken.
Another time, I was giving his sister a bath and he was waiting in our bed with his book. He accidentally leaned on the remote and it turned on the TV, and it was really, really loud. He fixates on that and often tells people how he turned on the TV and it was very very loud.”
But like all children, autistic or not, Conner has an ornery side that shows up occasionally, and this may be one of the hardest things for his parents to handle. Children with autism can be easily annoyed and lose their tempers. They aren’t being manipulative or purposefully oppositional, they just have difficulty regulating negative emotional reactions, and are easily triggered by unpleasant events. (Hattisburg Clinic, April 2021).
Emily: “Occasionally, I will do or say something completely ordinary, like, ‘Okay, Conner, it’s time to sit on the potty and go get dressed’. We do this every morning, but a couple of times this year, he said, “I won’t. I won’t go sit on the potty. No potty, no potty, no potty.” I said, ’Okay, but if you don’t sit on the potty, then you won’t be able to ride the bus. You have to sit on the potty if you want to ride the bus. Then he said, ‘I can’t, I can’t, I won’t ride the bus. I won’t sit on the potty.’ At that point, it was not productive and best to just step back for a minute until he calmed down a little bit. I don’t think it’s a bad behavior. I think it’s part of his disability.”
Emily makes dealing with Conner’s autism look easy. She is a sensitive, caring mom, who has altered her world in many ways so that her son can live the best life possible. But even if it was easy (which it isn’t), having a place of respite can do wonders. And that’s where Champ’s Heart enters the picture.
Larry Cudmore, founder of Champ’s Heart, lives just a couple of blocks from the McCormicks and they often watch him drive his horse and buggy through the neighborhood. Emily’s father, who is a retired local news anchor, did a story about Champ’s Heart, and Larry eventually reached out to the family and invited them to let Conner experience the horses.
Demanding schedules and stressors are an everyday part of an autistic child’s world, and programs like Champ’s Heart offer a much-needed respite from the daily grind. But respite isn’t the only gift this program brings to special needs families. It also creates a space that a special needs child can call their own. Although all family members are welcome, Champ’s Heart is a place created for the child.
Having a place to call their own serves a dual purpose. Parents raising special needs children are often plagued by guilt; they either feel bad because their other children don’t get enough attention or because their special needs child doesn’t get to participate in the same events as the rest of the family. For Emily, her angst stemmed from the latter.
Emily: “I had a little bit of mom guilt, you know, because I put my daughter in gymnastics, but then Conner didn’t have anything. I could have signed him up for special needs baseball, but he doesn’t care about that, so he doesn’t want to go to practices. Champ’s Heart is a place just for him.
And at Champ’s Heart, every child feels special from the moment they enter to the moment they say their good-byes.
Emily: “Larry is always there to greet us and to ask Conner what he wants to do that day. We can do whatever we want to do. Sometimes, he’ll ride a horse or ride in the buggy. One time, he rode a horse for about five minutes. He only wanted to do two laps around and then he wanted to play on the toys. They have these Little Tyke ride along horsey toys and there is a nice dirt pile with a lot of rocks in it. He just wanted to stand on that and feel the dirt for a while. And the great thing is that he can do that, and that’s fine. We donate to Champ’s Heart, but I don’t feel any obligation to pay, so I’m not feeling like it’s a waste of time and money if he’s not interacting with the horses the whole time.”
At Champ’s Heart, we come and there are no expectations. They can paint on the horses, feed the horses or they can brush them. They can also leave the horses to go play with the toys or in the dirt pile. And it’s fine. And Clara can come with us and she can participate too. Going there is never stressful for me and it’s something we can all do together, and that’s something that is usually hard to do.
Every time I would take Clara to gymnastics, Conner would want to go and play on the stuff, but he couldn’t. And I wanted to put Clara in group swim lessons, but they didn’t have any private lessons for Conner. I couldn’t take her to swim lessons and make him watch her get in the pool when he couldn’t go.”
Champ’s Heart is a place for the family to share positive experiences and for Conner to feel free to take control of his environment, even if it’s just for a while. Emily gets to relax her need to be constantly on point and rest in the knowledge that the staff at Champ’s Heart can see to Conner’s every need. Those two things would be enough, but Emily routinely gets an opportunity to participate in her own version of freedom from the demands of daily life.
Emily: “I used to ride horses and I owned one when I was a teenager. So, Larry lets me ride too. I can go off on my own and ride and I don’t have to worry about watching Conner to make sure he’s okay. I don’t feel bad about doing it at all because all of the volunteers are there to help.”
The McCormicks feel blessed to be a part of the Champ’s Heart program, and they are a testament to the fact that at Champ’s Heart, the only thing that matters is that everyone who attends feels embraced by the love and respect they have to offer.