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Fatherhood: How Zachary Shapes My Life

/in /by Guest Blogger

Ray Morris is a father of two. Zachary, his 27-year-old son, has intellectual and developmental disabilities. Ray is the founder of Dads 4 Special Kids, a member of The Arizona Developmental Disability Planning Council and an Engineer/Paramedic with the Scottsdale Fire Department. This Father’s Day, we chatted with Ray about what it means to be Zachary’s dad and how Dads 4 Special Kids plays an important role in his life.

For you, what does it mean to be a father of a son with a significant disability?

I am blessed to be Zachary’s father, he’s the right son for me and I’m the right dad for him. It doesn’t mean things are perfect but we’re both growing. We share a special and unique bond that enables us to have a deeper love. Zachary didn’t do the typical things that a child does like play baseball or football. I had to learn his value system and what’s important to him. When I go into his room in the morning and he sits up and looks up or when he lays his head onto my shoulder and just relaxes, I know that he is happy by the way he responds to me and embraces me in his style. It is a privilege and honor to receive his love.

Society gets locked into the importance of being the mom or dad of an NBA player. That’s wrong. It is the relationship between the dad and the child that’s important. When you have a child with special needs, it’s not about the accomplishments of the child or about what he is going to do. It’s an unconditional love for each other no matter what and supporting your child to live life to their level.

Did you always feel that way?

No, I went through a period of adjustment between what my life had been and the future vision I had for Zachary. Reality wrote another script. Zachary was born with a rare brain disorder and began having seizures around age four. I had to deal with my own shock and grief in my way. I had to learn to identify how I felt about Zach, how I felt about this new life, and take ownership of those feelings. Kelly my wife had to do the same, then we could help support each other deal the emotions.

Do you have other children?

Zachary is 27, and my other son, Tyler, is 25. Being Zachary’s father, I am very mindful of Tyler’s feelings and his upbringing. As Zachary’s sibling, I’m witnessing Tyler becoming a man with a great sense of compassion for others that accepts the individual not just the physical attributes.

How else has your life changed since Zachary was born?

Before Zachary was born, I used to love adventure racing. However, training for those events took too much time away from my family. Although that chapter of my life has closed, I am fully aware that self-care is important and I am now involved in recreational soccer. It takes less time away from my family and I can play in an adult soccer league with Tyler. I value my relationship with my wife, Zach and Tyler. I’ve learned that I can’t make them happy. However, I can be involved in the things that are important to them and support their happiness.

How has your wife supported you on this journey?

Kelly, my wife, wants to support me, but we deal with our emotions differently. It’s like my wife has a PhD in emotional expression, and I am in grammar school. We’ve had some challenges learning how to express and listen to each other’s emotions. It’s also challenging not to take ownership of each other’s emotions. Thanks to Kelly’s support, I wouldn’t be the husband, father, and man that I am today.

Tell us about Dads 4 Special Kids.

Dads 4 Special Kids is a support group for fathers. We have monthly meetings where dads can come together to talk. We also have one meeting that includes breakfast. Dads can bring their kids and not worry about how others will react if the kids start acting up. We also host marriage support and Resilient Relationship workshops. Another focus of the group is emergency preparedness planning in the family. I am a firefighter, so I know the importance of planning and informing the fire department of what will be needed before an event occurs.

The Arc recently launched the Center for Future Planning. What role do you see Dads 4 Special Kids playing as you plan for Zachary’s future?

My son Tyler has agreed to be a co-guardian of Zachary’s when my wife and I can no longer provide support. Tyler doesn’t know the ins and outs of the disability system. I want Dads 4 Special Kids (D4SK) to come alongside Tyler and help him support Zachary. D4SK aims to be an organization that will come along side dads who have children with special needs and walk with them through each stage of life. Our hope is that our experiences as fathers will better prepare new fathers who are beginning the journey.

Do you have any final thoughts for dads on Father’s Day?

I’ll be honest – having a child with a disability is challenging for a family. I want to provide fathers with the encouragement and support they need to address these challenges. We want to help these men step up to the plate and be prepared to navigate those up and down moments. We want those fathers to know they are not alone and that this journey will be unique and rewarding.

We thank Ray for sharing his story with us, and we wish him a very happy Father’s Day. For more information on Dads 4 Special Kids: www.d4sk.org. For more information on The Arc’s Center for Future Planning.

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My Sister Was Bullied by a Radio DJ

/in /by The Arc

Update: Since this blog post was written, the DJ made an on-air apology and announced that his station will be working with local developmental disabilities organizations on an awareness campaign.

By Alex Standiford

Hello, my name is Alex, and I have an older sister, named Kellie. Kellie is 30 years old, and can easily be described as the most loving, caring, and wonderful person I have ever met. She sees the world very differently than most of us– without cynicism and with complete and utter hope. To Kellie, each and every person is good, unless proven otherwise. Anyone who visits her, no matter how frequently, is always greeted with a “Hi!,” an endless, gut wrenching hug, and a sincere declaration of love. My sister is truly a beautiful person in both body and spirit whose outlook on life I can only hope to someday attain. In many ways, I look up to her. My sister passionately loves music and dancing and growing up I remember countless times that I would open her bedroom door to find her dancing and singing at the top of her lungs in front of the mirror.

You may wonder what makes Kellie so special, what makes her story different from any other big sister you or someone you know may have? Well, Kellie happens to have Down syndrome. If you know anything about Down syndrome you know that it is something that unique people, like my sister Kellie, are born with and will live with for their entire lives. Kellie, despite some hardships and challenges she has faced, has always persevered and been positive, friendly, and happy just being who she is.

On Monday, January 21st, my sister was faced with yet another instance of feeling like she was different, or that the fact that she had Down syndrome made her somehow less than other people. On the 21st she accidentally phoned in to Mo’s Radio Show on the Q92 Radio Station based out of Alliance, Ohio, where her manner of speaking was rudely scrutinized and unapologetically berated by both Mo and countless individuals who were “tuned in” at the time. Mo opportunistically exploited my sister’s imperfect speech through his radio show and made her an object of amusement for all of his listeners– including people that knew Kellie.

“No, say it real slowly. I want to try to figure this out. It’s a little game.”

Anyone would have been embarrassed to be both accidentally aired on the radio and ridiculed for something which one has no control over. What Mo and countless listeners did not consider is what this experience felt like for Kellie. Kellie is self-conscious about her Down syndrome and has expressed her insecurity throughout her life. Sometimes, she will ask, “Why do I look different?,” and other times, “Why do I talk funny?” When it comes with dealing with tough social situations, such as speaking with an unknown person when she accidentally dials the wrong number, she will fumble over her words out of general embarrassment that all people feel in such instances. Most of the time, people will understand, at least to some small degree, and will deal with the situation with as much compassion and tact as possible.

When it comes to dealing with difficult emotional situations, Kellie processes her feelings very outwardly. Everyone has an emotional range, and Kellie has the capacity to become so hurt that she will cry for days. Being the epitome of an optimist Kellie trusts and assumes that everyone is trustworthy and kind. When someone breaks that trust, it hurts her in a way that is far deeper and more powerful than I could ever understand. I imagine it feels like the most intense betrayal or the greatest heart break I could ever experience. It is earth-shattering.

Knowing this, now considering the reality of what happened that January afternoon, try to understand the emotional pain, heartbreak, and confusion that my sister had to feel for the sake of public entertainment. Undoubtedly Mo and the radio studio will continue to hold on to the argument that “the ‘host’ wouldn’t have aired the call had he known the situation in advance,“ that Mo “would NEVER do this with any sense of malice,” but what other sense could there have been in this situation? Mo himself stated, “You don’t know who Mo is? Okay, so I can laugh at you and you won’t know who to call and say you‘re offended. (laughs) Very good.” It was quite clear that Mo knew what he was saying and doing was offensive and inappropriate, but that did not stop him.

“You don’t know who Mo is?”

“No.”

“Okay, so I can laugh at you and you won’t know who to call and say you‘re offended. (laughs) Very good.”

Whether or not the call was made from an individual with Down Syndrome, an individual with a speech impediment, or some foolish prankster looking for attention, the direction and focus of the aired conversations were centered on something that is hurtful and demeaning to numerous people. Essentially, it was entirely ignorant to air the call into live radio at all. The situation would have never escalated had the “host” simply said to Kellie, “I’m sorry, I can’t understand what you’re saying,” or “This is Q92, I think you have the wrong number.” Whether intentional or not, this experience was real and it caused a great deal of hurt to many people, not the least of all to Kellie and it should have never turned out this way.

Luckily for Kellie, she has a strong, supportive family to help her through this time. What I don’t want to see happen is Mo or another jockey like him believe it is appropriate when “somebody calls my show with a little speech impediment– I have a little fun.” The next child or adult to become the focus of this cruel bullying may not be as lucky as Kellie. It could easily be someone who is defenseless to the act, someone who has no one to stand up for them—a child aired mistakenly on the radio who becomes an object of mockery and bullying at school or an adult with a developmental disability who lives alone in a group home. It is never appropriate to make someone who is different from you a bull’s eye on the target of your “humor”. We try to teach our children tolerance and love, but then what hope can we have for them to adopt this mentality when they can hear and see the adults around them blatantly ignoring the lessons they teach.

View the complete radio transcript or view Kelie’s Story on Facebook.