“I don’t know about special needs.”
So muses Cathy, mother of two and a passionate advocate for inclusion. “We use it because it’s the word we’re supposed to use, but I don’t know if it’s the right word. I mean, I have lots of special needs too! We all have those special needs. We just learn differently.”
Cathy’s experience of advocating for children with developmental disabilities began at an early age, when she immigrated to Canada at age three, along with her extended family.
“My first experience with love was a beautiful young child,” she says, referring to her cousin Rosina, who was born with physical and cognitive disabilities. Although she was unable to walk or speak or even see,
“Rosina was a precious gift. She could smile. She communicated by making sounds when you got close to her. And I loved getting that reaction from her.”
Cathy, herself just a young girl at that time, helped her family to take care of Rosina when she wasn’t in school. It was through this relationship that Cathy became aware of the stigma attached to children with developmental disabilities.
“I remember, my grandmother walked us to school every morning and picked us up,” Cathy begins. “And we used to see this little old lady all the time, because she lived along the way.”
This woman stopped and inquired as to how Rosina was doing, and Cathy’s grandmother replied that she was doing well. Following that, however, the woman remarked in her native Italian that it would have been better had Rosina died at birth.
“I was so disgusted,” Cathy asserts scornfully. “I was just little myself, and I thought, ‘How can anybody say that? How can anybody say that although Rosina can’t speak and walk and talk and all that kind of stuff, that she doesn’t have value?’”
Though gravely offended by such a remark, Cathy admits that such an understanding of developmental disabilities was probably due in large part to ignorance.
“That’s just the way it was.” Her shoulders slump in sad resignation as she speaks these words. “Kids like that were just hidden. That’s how the culture was.”
This kind of mindset repeated itself often throughout Rosina’s life, echoed most loudly at her funeral.
“I heard comments like, ‘She shouldn’t have lived at birth,’ or, ‘Now her parents can go on with their lives.’ Hearing that was heartbreaking!”
“Rosina’s life certainly had purpose. She mattered to me!”
Though she didn’t know it at the time, Cathy’s experience with Rosina would prove to be prophetic, preparing Cathy for the task of raising her own daughter.
Fast forward a couple of decades to the birth of Cathy’s first child, a girl named Michelle. Her unique developmental challenges weren’t obvious at first, but within a few months, Cathy began to notice some things about her daughter that gave her cause for concern.
“There was a glazed look in her eyes, and it seemed like she was confused,” Cathy relays. “She picked up objects with the palm of her hand rather than her fingers.” In watching such behaviour, “I felt like there was something just not right.”
In the years that followed, visits to specialists and several rounds of testing confirmed that Michelle did in fact have developmental disabilities.
“Children don’t come with training manuals,” Cathy comments. “But thankfully, our faith guided my husband and I through this difficult adjustment.”
Despite this, she reveals that, “It would take time for me to discover that the perfect plan I had for my life was not God’s plan for me. I had a lot of trusting to do.” But as life went on, “I discovered that God is found even in the messiness of life. God was there gently guiding us. He loves us and will never abandon us.”
In the aftermath of Michelle’s diagnosis, Cathy and her husband Bill resolved to learn from each other and work together, well aware that many marriages fall apart under the strain of caring for a child with developmental disabilities. She credits this resolution to an action of grace in their lives.
“I got lucky,” Cathy states plainly, claiming that Bill allows her to be herself without needing to ask permission. “Marriage is a chance you take on love, and I think it’s a chance worth taking.” Above all, God needs to be at the center, “because marriage is a sacrament.”
Still, Cathy and Bill had to work hard to learn what Cathy refers to as, “the language of special needs,” because, in her words, “We’re far from being perfect.”
When Cathy became pregnant with her second child several years later, she secretly hoped for another girl, wanting a sibling who she believed would be nurturing and watch out for Michelle as they grew older. When she gave birth to a son, Cathy initially mourned the loss of her dream of a sister for Michelle. But Jonathan turned out to be a huge surprise, becoming even more of an advocate for inclusivity than Cathy!
“He’s always advocating for the least, the last, and the lost among us,” Cathy shares. “Always, always, always.”
Jonathan also consistently keeps his sister as his top priority – thinking about her best interests even when it came to him dating!
“When he first started dating, Jonathan established that his girlfriend would have to pass ‘The Michelle Test.’” Though Cathy and Bill laughed at first, they soon came to see that Jonathan was serious about his intent to be a package deal along with his sister. Now married, Cathy describes Jonathan’s wife and Michelle as “soul sisters.”
“I thought it would be so great if I had another girl,” Cathy admits. “But I couldn’t have asked for a better son. I think he chooses Michelle over me, and it gives me great comfort, because I know I’m not going to live forever, nor do I want to!”
This was just one more example of God providing for Michelle in unexpected ways. Another came in the form of Michelle’s high school art teacher, who herself has a sister with developmental disabilities. This teacher saw potential in Michelle and requested that she be placed in a double class, allowing her to take art the entire year through for as long as she attended high school.
“She would submit Michelle’s work to judicators in different areas,” Cathy explains. “But she would never say that Michelle has special needs. And so often, her art got picked. It was awesome, it really was.”
After her graduation, Michelle’s passion for art continued to flourish at the Sara Elizabeth Center, a not-for-profit aimed at supporting the inclusion of persons with developmental and/or physical disabilities.
“Michelle’s work has been used at many events to promote inclusivity and equity, and to create greeting cards to support the work of the Center,” Cathy shares. “She finds inspiration and joy in art, and though she speaks few words, she is a true messenger, communicating God’s love in all her masterpieces and reminding us that we, too, are God’s masterpieces.”
In addition to her artistic ability, Michelle has many other gifts that she shares with those around her.
“She’s furba,” Cathy smiles, using the Italian word for crafty. “And she’s got great one-liners, too. She’s constantly making us laugh.”
Michelle also demonstrates in a singular way God’s superabundant love – so much so that she was asked to be a Godmother by one of her friends.
“When her friend called to ask us first, she said, ‘I want my little girl to know the same unconditional love that I have felt from Michelle my whole life.’ I couldn’t even speak, I was crying so much!”
The love and respect Michelle is consistently shown by family and friends is also what comforts Cathy whenever she feels tempted to compare Michelle’s life to others.
“Most of her friends are married and have kids.” This simple observation sometimes leads Cathy to feel a sense of loss. “But then I slap myself out of it and say, ‘Okay, you know better than that.’ What we do have is, she’s thirty-five and all those friends are still in her life. All those friends and kids know her. And all those friends and kids love her.”
Which, as a parent, is everything she wants for Michelle.
“Whether you have a child with developmental disabilities or not, I think that most challenges when it comes to parenting are exactly the same,” Cathy reflects. “Physical, medical, educational challenges may be different, but what is the same? You want your child to belong, to be happy, to be a contributing person in society. You want them to be healthy. And you want them to love you as much as you love them.”
“To me, there’s a lot more sameness than there is difference. A whole lot more.”
When it comes to the practical aspects of raising a child with developmental disabilities, Cathy insists that parents need to spend a lot of time on themselves, “because the biggest obstacle people with disabilities have are their parents.” Whether that looks like constantly coming to a child’s rescue or expecting more from a child than they are able to give, parents need to see their child for who they are and find the balance between nudging them forward without piling on too much pressure.
“You don’t want to define a person so that they can’t be more than what your expectations are,” she counsels. “You’ve got to push them, make them feel capable of more.”
In addition, taking time to recharge and to unpack and process emotions is crucial to avoid burnout.
“Happy mommy, happy baby. That’s true whatever kind of child you have.”
And, of course, trust in God and submission to His will is paramount. Reflecting on her life’s journey thus far, Cathy proclaims, “I am reminded that I am personally known and loved by God, as we all are. God never abandons us. And our best attitude is gratitude in good times and in bad. Even when God seems absent, His grace is at work, leading us.”
And His ways are often far more beautiful than anything we could have ever imagined.