Society holds a certain image of how an ideal family and parenthood should look, and each of those images revolves around healthy happy children.
This is exactly the life that Kim McLelland and her husband Ryan had pictured, and for some time, that is what they had.
“I wanted to transform from being a corporate executive to being a mom,” Kim says.
The pair moved back to Calgary from the United States to be closer to family and start their own.
At 28 years old, Kim gave birth to her first son Connor and only a few years later to Matthew.
The boys exhibited normal behaviors and despite some slower progressions, such as walking, there was no cause for concern.
Kim says that she knew her family wasn’t yet complete. She had two boys, which she wanted as she grew up with sisters, but she knew she wanted another child.
When Kim and Ryan had Charlie come into their lives seven years ago they were overjoyed as their family was complete.
Charlie was a jubilant baby full of smiles, laughter and even a few words before something changed.
Kim has a collection of baby books from the early years of her kids’ lives. Inside are an abundance of photos and little bits of text about them at the allotted age. Photo by Sarah Allen
A Bleak Diagnosis
The McLellands saw something shift in their baby boy at 18 months old. Suddenly, he was unresponsive in a few ways, including no longer responding to his own name, and he was screaming and crying almost all day long.
The only thing that seemed to soothe him at that time was when someone gave him a bottle or he was watching Baby Einstein DVDs. Kim says he wouldn’t even play with toys.
“Charlie’s always been a terrible sleeper, and when I mean terrible I mean like capital T terrible,” she says.
Charlie’s bedroom is a place he can go to escape the world whenever he needs. Photo by Sarah Allen
These were major hindrances in Kim’s ability to parent as she still had so many other responsibilities.
“I was honestly ready to pull my hair out because at that time he wasn’t even two. So I had a six and a nine-year-old; two other kids that were busy and needed my attention as well.”
The couple was desperate to find out what was happening with their son.
After several visits to different medical professionals and being bounced around with referrals because Charlie was still so young, Kim says she became extremely frustrated and lost.
Kim and Ryan were having one of their other boys asessed for a potential attention disorder when the psychiatrist asked her how old he was when he started walking. This made Kim very emotional because of the issues she was having with Charlie.
She opened up about what was going on and the psychiatrist told her they could privately assess kids his age in their office.
“They told us all the things my kid would not do. That was awful. That was probably one of the worst days of my life.” — Kim McLelland
At the time, the wait for assessment by the Child Development Centre was approximated at two years which the pair knew they could not stand to wait for.
Kim adds, “They have since gotten much better. They are pumping out diagnoses like crazy now. But there was no way I was willing to wait until my kid was four to have a diagnosis. I was crying every night going to sleep because I was so worried.”
No parent is overly patient when it comes to the health and wellbeing of their child.
They opted for a private assessment, which cost almost ten thousand dollars for the diagnosis of Charlie and his brother.
“They told us all the things my kid would not do,” Kim says. “That was awful.”
“That was probably one of the worst days of my life.”
The results of the testing: their oldest son Connor has ADHD (Attention Deficit Hyperactivity Disorder) and Charlie is severely autistic.
As Kim shares the details of her son’s diagnosis she begins to cry.
“They [said], ‘your kid will never talk, he will never tell you he loves you, he will never be affectionate’ and I’m like… really? Because I don’t believe that. You don’t know my kid. You don’t know us.”
The Grieving Process
“When you get a diagnosis, what most people don’t know is that you go through a whole grieving process. The birth of the child you thought that you had is no longer. The life you thought you were making as a family is now gone,” Kim says.
She adds that some people go through this process for an extended period, and some even hit a stage where they are never able to move past.
“Then, as a mom who carried that child, you go through all the levels of guilt. What did I do wrong? What did I eat? Did I drop him? Was it my genetics? You go through everything.”
For Kim, her world was turned upside down and she says most people have no idea what a mother in that situation is going through.
“It is very difficult to have a conversation with anyone else because they will say, ‘Oh, you did everything right.’ And you’re like, ‘That’s not what I need right now actually.’” Tears again well up in her eyes as she says, “It’s very lonely.”.
Kim says she couldn’t even see friends for coffee or drinks because she couldn’t put someone else’s social needs ahead of what she was going through. She admits that she and Ryan didn’t want to tell people about the diagnosis.
When Charlie comes home he has a quick snack followed by time to play. Photo by Sarah Allen
“The only [people] I told was my oldest sister who is a speech pathologist and my neighbor who helped me go through getting funding from the government. We didn’t tell our families or our kids until a year after Charlie was diagnosed.”
During the period that directly followed his diagnosis it was also difficult for Kim to give him the love and care he needed.
“I was grieving, I was angry, I was sad and I didn’t even want to touch my kid [but] my sister said, ‘Kim, I have people come into my office all the time because their kids are not affectionate and the [parents] never kept trying, and now it’s just about responsibility, there’s no love there.’ She saw it so many times so she said, ‘I know you don’t want to hug him as he’s screaming and crying but you need to do that. Keep doing that.’”
Because even Kim and Ryan as parents couldn’t yet decipher what this meant for their son, their family, or themselves, they did not want to give people a perception of Charlie that was not true.
She thought, “I want to know what that means for Charlie. I don’t care about anyone else, I want to know what [the diagnosis] means for my son. I want to get to know him and learn what his strengths are.”
Kim and Ryan did not want other perceptions of what autism means, or is, to get in the way of the way they viewed Charlie’s case.
Turbulent Times
Because Charlie sees the world through a completely different lens than we do, his senses can be easily overloaded by places or circumstances that many of us view as normal.
During the period before Charlie was able to start school, Ryan became the sole bread-winner as Kim had to step away from her work to care for their son and help facilitate his many therapies.
“Most people don’t realize that when their child is diagnosed with severe challenges, people don’t realize that means that [a parent], usually the mom, has to quit her job or go on disability herself.”
While this placed additional financial strain on the family, it was an absolute necessity for Charlie’s ideal future.
Of course the McLelland’s faced the fee for a private diagnosis, but there is so much more to consider.
“You get a tax credit that the federal government will give you for having a person with special needs [to care for]. You have to apply for it. Ironically you have to reapply for it every five years as if autism goes away. It costs me money every time to redo that. It isn’t excessive but it still requires you to have your doctor write a letter, send it into the federal government and they can decide whether or not they agree,” Kim says.
Kim and Ryan have very active kids and Charlie has proved to be quite the thrill seeker.
While they try their best to support his adventurous personality, Kim says, “For us to be able to do skiing [for example], to teach Charlie how to ski his program will be double the cost than what it would be for any of my other kids.”
She describes the same thing with sending her kids to summer camps. Where either Connor or Matt would be $450 on average while Charlie could be about $600 more per week.
Beyond regular activities, Charlie has other needs such as sensory equipment that Kim and Ryan have learned to get crafty with in their approach.
“We have spent hundreds and thousands of dollars on sensory requirements, things that Charlie would need that would help him regulate his senses. We have often tried creative methods. But then you are not just looking at not just a cost consideration you are looking at time. I might be able to save $2,000 on not buying that bubble tube, but it’s going to take me 20 hours to recreate it.”
Kim says that a bubble tube is a calming object that is common for an autistic child’s sensory room. It’s ideally a separate room in a family’s house, but something the McLellands simply couldn’t accommodate.Charlie sits in an isolated section of his room used to regulate his senses. Photo by Sarah Allen
“Lots of people do [have the rooms in their house]. For us, we just have a small home. All of our rooms are taken. But what [we did] is we created parts of Charlie’s room as a separate sensory area so that he could feel like he could go to his room and close out the world if he needed to.”
A supermarket is the perfect example of a regular place that can cause Charlie a lot of stress.
“You’ve got cart noises, you’ve got kids, you’ve got people making noise over the intercom. The radio is playing, you have people moving back and forth, you’ve got smells… I mean it’s like a catastrophe.”
Automatically Charlie will put his hands over his ears in an attempt to take one of his senses out of the equation.
Kim says, “It is very much a way for him to cope.”
Connor and Matt have grown up with Charlie and are well-conditioned to the way he functions, but there have been times where they need to stand up to strangers when cruel reactions take place.
Kim says they had to work with a psychologist to essentially train the boys how to react and help when Charlie experiences a breakdown in a public place.
“For some reason Charlie would have meltdowns in parking lots. We could see our van only 15 feet away but couldn’t get there. But now we are in the middle of the parking lot with cars driving by and he’s flailing, it could hurt him or hurt me. The kids would have to stand their backs to me so they could see the cars [while I tried to calm Charlie down]. But people would stop and stare, make comments, and that was hard for them to say, ‘My brother has autism, he’s okay, he’s just having a meltdown and we don’t know why. Everything’s okay.’”
Despite this, the comments made in moments such as these are nothing short of cruel.
“We’ve had some pretty not-so-nice things said to us like, ‘What the f— is wrong with your kid?’, ‘What are you doing to your kid?’”
Kim also talks about other circumstances where Charlie is simply excited and flapping his arms or making another gesture.
Often in these cases people look curious as if they are trying to figure him out since he looks like a normal kid.
She says, “There is times where I will just tell people because they are staring and curious. You can see the look on their face… but then there is other times where you can just tell they are being judgmental.”
Progress Makes Perfect
Kim says that when a person is diagnosed with autism there are some key areas that are being assessed.
“When they do a diagnosis they don’t just evaluate you one time. It’s really multiple sessions. For all the autistic people I have met, social [has been] a piece of the diagnosis,” she says.
Fine motor skills, gross motor skills, both verbal and non-verbal forms of communication and social skills are taken into consideration during the diagnosis process.
“He’s so affectionate. He comes to me for butterfly kisses and tells me he loves me and all those things the doctors told me he would never ever do.” — Kim McLelland
Charlie was originally diagnosed with severe autism but Kim says that he is an amazing non-verbal communicator and has not had him reassessed.
“You’ll never outgrow being autistic, but you can certainly improve on different things based on doing therapies, strategies and [using] coping mechanisms.”
Kim says that now Charlie talks to her in a way — he asks for things — and food is normally a good motivator.
“Will my Charlie ever become totally verbal? He might… I’m still hopeful. But will he ever be able to [hold a conversation] like you and I? No.”
Charlie is a full-time student in a school that offers a special education program and shares a class with four other autistic students.
Currently he works with a speech pathologist, a physiotherapist and an occupational therapist through the Calgary Board of Education in addition to a contract with Family Support for Children With Disabilities (FSCD).
Sentence strips are used to help build communication skills and have a variety of topics that encompass daily life. Photo by Sarah Allen
Kim says, “I am very fortunate.” In regard to Charlie’s crying and sleeping habits, the family has seen a great deal of progress.
“My kid [used to] be up seven to 10 times per night and now he will maybe get up once, and that’s if he has to go to the bathroom. “
She says it is a similar situation with Charlie’s sensory and communication abilities.
“Charlie couldn’t even meet your eyes, he would never make eye contact. Now he is brilliant [with] eye contact.”
The affection that Kim had continually worked on with Charlie based on her sister’s recommendation worked wonders.
“He’s so affectionate. He comes to me for butterfly kisses and tells me he loves me and all those things the doctors told me he would never ever do.”
She says that therapy and a ton of love and patience have brought them to this place, but reminds that every case is different and in many ways they are extremely lucky to have gotten to where they are.
For example, many families with autistic children cannot travel. The change of locations, flying on a plane and even being in a new bed can cause distress.
Kim expresses a great deal of gratitude that she and her family can go to a place like Disneyland where they have the option to help Charlie in a variety of ways but still fulfill his thrill-seeking side.
One of the happiest moments Kim had was when Charlie blew out the candles on his own birthday cake.
“[We] worked on this one goal for 10 months for him to achieve it, and he did it! I was so flippin’ happy. Years later, his occupational therapist remembers it and said, ‘Oh my gosh, look at him blowing out the candles with his grandma [for her birthday].’ It was so awesome… So behavioural wise, we’ve come a long way.”
Moving Forward
Kim is the co-chair for the board of the Calgary zone of the FSCD parent advisory council and works with the Alberta Children’s Hospital — something that began as a volunteer role but evolved into a position being created for her.
She works in the department of patient and family-centered care but also volunteers with another group at the hospital called Family to Family Connections which she is extremely passionate about.
“I feel like I need to leave a legacy. Not just for my kids, but for all autistic families.” — Kim McLelland
“Because I’ve already gone through the whole process of the diagnosis and what to do, how to get funding, [etc.], I am what they would consider a peer mentor and they [will] match me with a newer family who had just had a diagnosis of autism and wants to talk to a family and not a physician.”
After feeling so alone following her own experience, Kim knows how important this is for other families.
“One thing that I learned is that it’s okay to feel everything that I’m feeling and I know I am a hell of a good mom, I’m a really great wife… it’s just knowing on certain things that it’s okay to feel [the negative emotions].”
Kim says that she interacts with a lot of families who don’t have it as good as she does, but she still feels like she needs to do something more.
“I feel like I need to leave a legacy. Not just for my kids, but for all autistic families. There is a lot of people going through a lot of stuff. They need help. I really feel like there is a purpose there for me. Do I worry about the future? For sure. I’m worried about the future when I’m not here and [Charlie] is an adult, and that [may] fall to my kids.”
Charlie has come a long way thanks to his family and various therapies. Now he can play with toys that Kim never thought he would come around to. Photo by Sarah Allen
Kim says she could fill a textbook with everything she has learned from raising Charlie, but she shares her best advice.
“Know your child. Don’t worry about everybody else’s kids with autism, just worry about your own. Learn and know your kid so implicitly well that you can start to know what they need before they even have to ask… and take care of yourself. You have to take care of yourself because you will be nothing if you are tired and awful. Be hopeful, because there is so much to learn, it is an incredible journey.”
Editor: Jolene Rudisuela | jrudisuela@cjournal.ca