The Greatest Joy: Raising a Child with Special Needs

Written by: Ryan DeLeva

Raising kids is never an easy task, raising four of them is even harder, but when one of those four has special needs, it seems all but impossible. However for Bernadette DeLeva, it's nothing more than another part of life. 

 Bernadette’s daughter Isabel is an 18-year-old girl diagnosed with Koolen-de Vries Syndrome (KdVS). Koolen-de Vries is a genetic disorder caused by partial deletion of the 17^th chromosome or mutations to the KANSL1 gene and is a disease so rare that it had not been properly discovered yet at the time of Isabel’s birth.  

KdVS typically presents itself through cognitive and developmental delays, compulsive behavior, and distinct facial features. Above all else though, people with KdVS are known for their exceptionally friendly and cheerful personalities. 

When people hear a parent has a child with special needs, the response is often predictable: "I’m so sorry, that must be so hard."  "You’re so strong." or even, "I bet they’re still amazing despite that." 

 Bernadette believes these sentiments overlook a fundamental truth. She argues that the children are the ones who are truly strong, and that they are amazing because of their diagnosis, not in spite of it. 

 "She’s so much more social than I am," Bernadette says. "She sees the good in people in ways that I can’t, no matter how hard I try." 

While Bernadette had always intended to return to her career as a teacher once her children were older, Isabel’s birth shifted her priorities. She knew that she would have to stay at home to give Isabel the care she needed and deserved, but this change in life plans did not come as a complete surprise to her.  

As an educator, she had experience working with children who had special needs and had been prepared for this possibility. "Honestly, I had always prepared myself for this because that’s life” 

One of the parts that worried Isabel’s family most when she was a baby was her speech. Around nine months her parents began gearing up for her to say her first words, then came twelve months, then two years, then finally three.  

A little bit after turning three, Isabel finally began speaking, only one or two words, but for her parents it was one of the most beautiful things they could have ever heard. 

Now, for better or for worse, Isabel won’t stop talking. Bernadette recalls her speech therapist giving her a warning, jokingly saying “I can’t undo what I do” and truer words have never been spoken. “Isabel is one of the most friendly, outgoing, and talkative people I know” claims Bernadette. 

She also recalls a dream she once had saying “I used to have a dream where one day she just started talking and wouldn’t stop” and eventually that became a beautiful reality for her. “Having her speaking not be a guarantee makes her learning to talk that much more impactful and impressive.” 

Another aspect of raising a special needs child that Bernadette speaks on is the community of people around you. While most people pit their kids against each other to see who’s can play their instrument better, run faster, or get higher test scores, the parents of special needs children all make sure that everyone is thriving together. 

“There’s no competition among the parents, we all just want to see our kids happy.” Whether it’s at their unified basketball games, the bowling team, or the dance and cheer teams, the parents all cheer for every kid as if they were their own. 

While Isabel herself is a gift to have and a wonderful daughter, that doesn’t mean that Bernadette faces no hardships because of her disability. Even though Isabel is very aware and understanding of her limits, that does not mean everyone else around her is. 

At school Isabel has faced problems with some support staff put in place to help her grow, Bernadette recalls two specific incidents that occurred at her school. “Just recently there was a situation at school where her physical therapy teacher had her walk down the stairs with her arms all the way out, off of the railings. If you know Izzy, you know she can’t balance herself like that and this was incredibly dangerous for her” and then a week after that “A different physical therapy teacher had her hopping over raised bars to strengthen her legs but she ended up tripping and spraining her ankle.” 

As much as schools try to help and provide resources that these children need, there’s always going to be something that inhibits their growth and makes the parents’ jobs harder. 

Despite any hardships that come with it, Bernadette feels that raising a child with special needs is a gift, and she wouldn’t give it up for the world. She doesn’t feel that Isabel’s disability inhibits her but rather allows her to be who she truly is “one of the sweetest girls I know” 

After speaking Bernadette left me with just one more thing “She’s my greatest joy, make sure you put that in there.”