OXYGEN

Glenn Curtis pulled into his driveway, and put his car in park. It had been a long difficult day at the office, and he was glad to be home. As he unfastened his seat belt and reached for his briefcase, he felt every one of his fifty-seven years. Stepping out of the vehicle, he looked at the corner window of his neighbor’s house. There was Kyle, just like always, sitting and watching. The little boy slowly lifted his right hand and waved. Glenn smiled, waved back and then headed inside.

The Davis family had moved in next door eight months ago, but the mystery still remained. There was definitely something wrong with the little boy, however it was unclear exactly what it was. Glenn had become acquainted with the child’s father, Rob. He seemed friendly enough, but he had never offered an explanation for his son’s intellectual and physical challenges, and Glenn certainly wasn’t going to ask about them. The mother, on the other hand, was a different story. He had only seen her a few times, and it appeared she had no desire to interact with anyone. All he knew for certain was that her name was Pamela.

Glenn felt sorry for the boy and, in fact, the entire family. It was an unusual situation that he couldn’t put his finger on. Because of his demanding work schedule he wasn’t even sure if Kyle attended school regularly. Nor did he know how old he was. Glenn guessed him to be about eight or nine, but he seemed small for his age.

Kyle was rarely outdoors. But the few times Glenn had seen him going to and from the car, his physical challenges were pronounced. He obviously had a serious issue with his balance and there was a definite problem with the left side of his body. It seemed weaker, and there was a severe tremor in his left hand.

He set his brief case on the dining room table and opened it. He would be working throughout the evening trying to prepare for an important meeting with a potential client. But his mind slowly drifted back to his neighbor’s son.

Glenn had never had much interaction with people with disabilities, which he assumed explained why he always felt a little uncomfortable around the child. There was an obvious intellectual disability to go along with the physical issues he lived with. However, it was the first time he heard Kyle attempt to speak that really troubled him. The sounds the young boy made were not understandable. There seemed to be a shortness of breath that forced him to pause in the middle of each thought. For Glenn, listening to the sounds Kyle made was disturbing. It made him wonder what kind of life the child had now and what the future held in store.

He started shuffling through the paperwork he would need to reference later when he entered data on his lap top. But after a few seconds he abruptly stopped. The image of Kyle in the window would not fade away.

The mental picture forced him to consider some unpleasant questions. What could the boy do? He was so isolated and closed off, how could he contribute? What value would he have to society? Was sitting and endlessly staring out the window really living?

Although Kyle seemed to understand some of what was said to him, Glenn thought that his inability to speak made it unlikely that he would ever be included in life. Kyle appeared to be helpless and vulnerable. It didn’t seem like he would ever be able to care for himself, and that meant he would always be dependent on others for his welfare and safety.

In Glenn’s opinion, the multiple disabilities that the boy was forced to deal with prohibited him from having any kind of meaningful life. Although he wished he didn’t feel that way, he couldn’t help it. Day after day Kyle sat and watched the world pass by. Over the months, Glenn had become convinced that the boy’s life was tragically unimportant and that his existence had no real purpose.

But when he thought about Rob and Pam, his feelings turned to genuine sadness. He couldn’t imagine what it was like trying to raise a child with such a disability – and he couldn’t help but wonder why their son had those challenges.

Suddenly Glenn became aware of the growling in his stomach. He had skipped lunch again at the office, and now he was paying the price. He quickly put his neighbors out of his mind as he focused on what to fix for supper. He was tempted to just heat up a frozen dinner, but on his doctor’s orders he was making a half-hearted attempt to eat healthier.

He went to the refrigerator and got out some fresh fruit. As he stood at the counter chopping it up, he had no way of knowing that next door at the Davis’ house the nightly ordeal of mealtime was in full swing. Glenn popped a grape in his mouth and began to plan out his upcoming business meeting.

 

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The following Saturday morning, Glenn stepped out his front door and noticed Rob sitting in a chair on the front porch. He was surprised to see Kyle sitting next to him. When they heard his door shut, they both looked in his direction, and Kyle, as always, immediately waved. Glenn was on his way to buy some shelving he was going to put up in his garage, but he was in no hurry. He walked over to them.

“Good morning.” As soon as Glenn spoke he noticed the weariness on Rob’s face. He looked exhausted.

“Morning.” Rob tried to be polite. “Looks like it will be a pretty day. Thought we would come out and get some fresh air.”

Glenn nodded. “Yes, I was just going to run a quick errand.”

He turned to Kyle. “How are you?”

Kyle smiled but did not attempt to speak.

Rob said, “He doesn’t get outside as much as I would like, so……” His voice trailed off. 

Under normal circumstances the silence that followed would have felt awkward, but for some reason it seemed appropriate. Rob not only looked tired he seemed troubled. He had the appearance of someone who was carrying a huge burden that only he was aware of.

Glenn considered making some more small talk and leaving them in peace, but something didn’t seem right. He didn’t want to be nosey, but maybe Rob would like to talk to someone. Glenn was divorced with two grown daughters that he didn’t get to see as much as he would like, so clearly he didn’t think he had the answers to anyone else’s problems, but he knew that sometimes people just wanted someone to listen.

Unsure of how to approach the subject, he decided to just be direct. “Rob, is everything okay? Anything I can do?”

Rob’s face fell. “I thought I was doing a better job of hiding it than that.”

He turned to his son and gently said, “Head back inside. I won’t be out here too long.”

Glenn watched as Kyle carefully stood up and wobbled precariously with each step. Once inside, he pushed the door closed.

Rob softly said, “We are supposed to let him do things on his own, so I try to let him walk without any help. This morning he is doing better than some days.”

“How old is Kyle?”

“He’s nine. He had a birthday last month.” There was a long pause and then Rob said, “You’ve known us for a while now, but you’ve never asked about my son. I bet you’re curious, right?”

Glenn answered. “I would be less than honest if I said I wasn’t curious about all of you.”

Rob nodded knowingly. “Yeah, I bet from the outside it does look strange. But our lives are what they are, and there’s not much I can do to change things.” Instinctively he turned and looked at the corner window where he saw his son taking his seat. He smiled at Kyle and then faced his neighbor and startled him by asking a simple question. “Glenn, do you think life is fair?”

Although caught by surprise, Glenn answered without hesitating. “No. I don’t think it is.”

“Me either.” Rob sat for a moment and played with his wedding ring. “I had to put Pamela in the hospital last night.”

“Oh, I’m sorry. I didn’t know.” Glenn wondered where this was going. “I hope it’s nothing too serious.”

Rob looked away. “Physically she is fine, but mentally……she’s fragile.”

Glenn instantly realized why Rob seemed exhausted. It sounded like his life was overwhelming. Just caring for a child with a disability would be enough, but if his wife was not well, all the responsibility for their lives fell on him.

Rob continued. “She has been in several times in recent years.” He looked out at the street and watched as a car slowly drove by. “Don’t you have kids?”

“Two daughters.”

“Are they happy and healthy?”

An unusual question, Glenn thought, but perhaps relevant considering the tone of the conversation. “Yes they are, thankfully.”

“That is a blessing.” Rob paused and rubbed his hand over his forehead before continuing. “Kyle was also born healthy. Most people see an intellectual or physical challenge, and they automatically assume the person was born with it. But that’s not always the case.”

Without even thinking about it, Glenn sat down in the chair next to his neighbor.

“I have wondered about Kyle’s situation.” He admitted.

Rob sighed. “Situation. That’s a good word for it.”

He took a deep breath and then described the tragedy that had broken his heart. “It happened one day at lunch when Kyle was almost three. I was at work, so it was just he and Pam. It’s hard to believe now, but he was quite the talker at that age. He had finished his peanut butter sandwich, and he asked for some grapes. Pam always cut them in half for him, and she had them in a bowl on a small table at the end of the counter. But just then, her phone rang out in the living room, and she went to answer it. The call lasted for just under four minutes, but that was long enough to change our lives forever.”

Glenn was moved by the anguish that was etched on Rob’s face. It was obviously painful for him to re-live that day.

“When Pam walked back into the kitchen, she found our son lying on the floor. His lips were blue, and he wasn’t breathing. She frantically called 911, but by the time they arrived the brain-damage had occurred.”

Glenn had never imagined such a nightmare had occurred to the family next door.

“My son is the person he is today because of a lack of oxygen to his brain. His disability is not the result of a genetic condition, a birth defect or a violent injury. All it took was a single grape to make him choke and block his airway.”

Glenn had no words. The horror this family had experienced was unimaginable.

“That was six years ago. But for our family, it seems like time has stood still. Kyle has slowly made progress, and I try to remain optimistic – but Pam……” He paused for a moment as he thought about the way his wife had suffered. “Pamela has never recovered from that day, and she has lost all hope. She cannot forgive herself for walking away to answer the phone. She goes through periods where she can barely function, and then she suddenly hits rock bottom. That’s why we moved here, to get away from that house. She couldn’t stand to live there anymore.”

Rob cleared his throat. “In Pam’s case, when the bad spells come, she just fades away. She’s not there anymore. It’s terrifying to watch her lose touch with reality.”

In shock, Glenn softly said, “I had no idea.” For months he had lived next door to this family without having a clue about their difficulties. He glanced over at the window and watched as Kyle sat rocking back and forth.

Rob shook his head. “Over the last few years I’ve begun to believe it’s more difficult to have a child who is born healthy and develops challenges later. Being able to remember my son as he once was, and thinking back over all the dreams we had for his life, makes the reality hurt even more. If he had been born with his disability we might not be quite so aware of what was lost. But that’s just my opinion about our family. I know it’s different for everyone, and there’s probably no right or wrong answer.”

Glenn agreed. “I’m sure that’s true.”

They sat in silence for a time, and when the conversation started up again it drifted to far less important topics. After a few more minutes, Glenn, decided it was time to go. He stood up and spoke as honestly as he could. “I hope our conversation has not made things worse.”

“No, no. I actually feel better after talking about it.”

“Good. I just want to make it clear that if there is ever anything I can do, please let me know. I’d be happy to help in any way I can.”

“Thank you. I really appreciate that.” Rob paused as he considered his next words carefully. “Would it be okay if I gave you some friendly advice, based on my experience?”

“Of course.”

“Please never take your daughters for granted. Always try to communicate with them, and be there for them. It’s not a given that you will always have that privilege.”

Glenn extended his hand, and they shook. “Thank you. I will.”

As he walked to his car, Glenn could scarcely believe the story he had just heard.

 

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For the next week, Glenn could not get their conversation out of his mind. He thought about how devastated Pamela must have been to find her child not breathing. He tried to imagine her sense of grief that was only matched by the guilt she felt over those four minutes. He wasn’t sure he would be able to go on either. He thought about how Rob was assailed by heartbreaking events from every direction, and he became more certain than ever that life is not fair.

But most of all, he thought about Kyle. The boy had always been a blank to Glenn. He was just an unusual child that sat at a window. But now he had a story, he had a past – however, Glenn couldn’t help but feel like he had a very limited future.

He felt guilty for having such thoughts, but he was not able to see Kyle as someone whose life mattered. He thought of him as a victim, and he only focused on the things he was sure the boy would never be able to do.

But eventually the neighbors’ problems were pushed out of Glenn’s mind as his preoccupation with the mounting burdens of his job filled his thoughts. He was spending almost every waking moment at the office trying to close an important deal. Because he was enduring unrelenting pressure to get it done, Glenn had slipped back into his bad habit of living on fast food and caffeine. Although exhausted when he got home each evening, he struggled to sleep. He just could not turn off all the problems at work, and consequently he laid in bed worrying late into the night. The potential client was going to make a decision within the next thirty days, and his company could not let up.

Glenn pushed for as long as he could, but two weeks later the stress took its toll. He woke up on a Thursday morning and didn’t feel well, but he went to the office anyway. By late afternoon he felt terrible. His heartburn was killing him, and his head was throbbing. He sat at his desk trying to concentrate as waves of nausea swept over him. He was sitting with his forehead in his hands when his boss walked in, took one look at him and told him to go home.

Glenn was so sick he didn’t argue. He just wanted to make it to the house and get in bed. The drive seemed to take forever, but he finally pulled into his driveway. He sat for a few seconds trying to catch his breath, but it was useless. Slowly he opened the door and got out. As he held onto the top of the car for support, he glanced at the window and saw Kyle waving at him. Out of habit Glenn raised his hand to wave back, but at that moment an excruciating pain exploded in his chest. It was like nothing he had ever experienced before, and for a moment he was frozen in agony. He took a single step before the crushing pressure overwhelmed him and drove him to his knees. He desperately struggled to get some air, but every fiber of his body was being devastated by the massive heart attack.

Glenn could feel his throat tightening as a terrifying sense of panic swept through him. Slowly he crumpled over and landed on his back. The realization that he was in life threatening danger made him fight to remain conscious, but despite his efforts everything started to fade. As he laid on his driveway, incapacitated by the intense pain, no more than two minutes passed – but to Glenn it seemed like hours. Incredibly the pressure in his chest continued to get worse, and he didn’t think he could stand it. He blinked as the sweat on his forehead began to trickle into his eyes.

But then suddenly, as his vision started to blur, a shadow appeared over him blocking out the sunlight. Depleted of almost all energy, he tried to focus his eyes, but the image remained hazy. In his final moments of consciousness he thought he heard someone saying something, but he couldn’t be sure. Glenn’s brain rapidly lost its fight for oxygen, and it began to shut down. He was staring blankly at the shadowy figure when he slipped away into darkness.

 

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Five days later, thanks to the science responsible for the latest medical treatments and procedures, Glenn was resting quietly in a hospital bed. The quadruple bypass had restored the blood flow to his heart and provided him with another chance in life. But being so close to death, had been unnerving. Just a week ago he could not have imagined that he would end up here, and now that the initial shock had worn off, he felt compelled to consider life with a different perspective. Just hours before his heart attack, every waking moment had been driven by the exhausting demands of his job. But now all the business details and deadlines that had seemed so important were meaningless.

The doctors had explained to him, in greater detail than he wanted to hear, just how close he came to dying. They stressed to him that if he had been deprived of oxygen any longer, it would have been catastrophic. The EMTs had arrived at the last possible moment to bring Glenn back. Their efforts had been dramatic and decisive, and he owed them his life.

But even after all the physical discomfort, anxiety and fear that he’d endured, it was the doctor’s words about being denied oxygen that haunted him. Glenn could not help but picture poor Kyle next door. To think that he could have died or ended up with brain damage made him feel both thankful and relieved that he would not end up helpless like his neighbor’s son.

He started to think about how he wanted to change his life going forward, so he could make the most of his remaining years. But eventually fatigue overwhelmed him as his body continued to heal from the surgical trauma he had undergone. Soon he began to feel drowsy, and he slowly drifted into a deep sleep.

 

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The next day, Glenn got the good news from his doctor that if he continued to improve he could go home in twenty-four hours. With his spirits buoyed, he enjoyed the best meal he’d had in the hospital. He was just finishing it when there was a knock on his door. Glenn was surprised. He’d already had a visit from his daughters, and several of his coworkers had stopped by, so he was not expecting anyone.

“Come in.”

The door opened a crack and Rob peeked around. “Would it be okay to visit for just a minute?”

Glenn smiled. “Of course!”

Rob pushed the door open and stepped in. A moment later he was followed by Kyle. Glenn was startled to see the young boy.

Rob sat down in a chair at the foot of the bed. “Well, you certainly look good considering what you’ve been through.” Kyle stood by the door. He smiled at Glenn and waved.

“It’s great to see both of you. Thanks for coming by.” Glenn thought that Rob looked less tense and more relaxed than the last time he saw him. “They told me I get to go home tomorrow. My daughters are going to take turns staying with me for a few weeks, so that will be nice.”

Rob shook his head. “That is great news. I tell you what, you really had a close call. I had just gone around the corner to the convenience store for a couple of minutes, and I was shocked when I drove back onto our street and saw the emergency vehicles. I had no idea what was happening.”

“Yeah, once I collapsed on the driveway I wasn’t aware of anything else. I woke up in the hospital connected to a bunch of tubes and machines, but I was just thankful to be alive.”

“I watched as the EMTs worked on you. It was amazing the way they took care of you.”

“My doctor told me they got there just in the nick of time. I’m hoping that once I’m home I can find out who called 911, so I can thank them.”

Glenn watched as Rob’s expression suddenly changed and tears began to fill his eyes. “Oh my God. You don’t know, do you?”

Glenn was momentarily confused. 

Rob said, “You lost consciousness without knowing who made the call.”

“That’s right. I think I remember seeing someone standing over me, but I couldn’t make out who it was.”

In a voice choked with emotion Rob softly said, “It was Kyle.”

For a moment Glenn was stunned. “What?”

Rob turned to his son. “Kyle was watching from the window when you collapsed. Because of his speech challenges we have kept a landline phone in our house – just in case of an emergency. He called 911, and even though they did not understand what he was saying, they sent a rescue unit based on our address. After he heard them say that help was on the way, he laid the phone down and went outside. It was Kyle that you saw standing over you. He remained by your side until the EMTs arrived.”

Still shocked, Glenn could hardly comprehend what he was hearing. Never had he imagined that it was Kyle who’d made the call. It did not seem possible that this young boy, was the reason he was alive. It was unbelievable.

Glenn turned and looked at Kyle. For the first time, in the eight months he had known him, he saw a person. He was no longer just a child with brain damage. He was not a nine-year old whose speech was incomprehensible. His awkward way of walking no longer mattered. This was someone who, despite having disabilities that Glenn mistakenly believed made his existence meaningless, had saved the life of another human being.

He studied Kyle for a few moments. He now realized how wrong he had been to judge a person without really knowing them. Glenn felt embarrassed that he had thoughtlessly dismissed the boy’s life as not worth living.

He motioned for Kyle to come closer. With halting steps, Kyle made his way to the side of the bed. Glenn reached out and took the young boy’s hand in his. “Kyle, it’s not enough for me to just say thank you. I’m alive today because of you. I will be forever grateful for what you did. For the rest of my life, I’ll remember that each day is a gift you have given me.”

Kyle smiled at Glenn – and then, with great effort, he slowly said, “Get well soon.”

Glenn could feel all the emotion of the last few days rushing over him. He turned to Rob. “Your son not only saved my life, he opened my eyes to how foolish I’ve been. I’m ashamed to say that I underestimated him in every possible way – and I am living proof of how wrong that kind of thinking is. I want to apologize to both of you. I’ve learned a lesson that I’ll never forget.”

“You don’t owe us any apologies.” Rob said. “I’m just thankful you’re doing better, and I am certainly thankful that Kyle could help you.”

He turned to his boy. “I am proud of my son.” He paused for a second and then said, “And so Is Pamela. When I told her what Kyle had done, it lifted her spirits in a way I hadn’t seen in a long time. It gave her hope that the future could be brighter than she imagined.”

“I am so glad to hear that. You all deserve to be happy and to be able to move on with your lives. I’m going to try to do the same.”

Rob was pleased that he’d gotten to tell Glenn that it was his son that had called 911, but he didn’t want to stay too long. “Well, I think we better go, so you can get some rest. If you don’t mind, I’m going to check in on you once in a while when you get home, just to see how you’re doing and to see if you need anything.”

Glenn nodded. “That would be great.” He watched as they made their way to the door. “Thank you both so much for stopping by. And Kyle, I want to thank you again. I will never forget what you did for me.”

Rob smiled, opened the door and stepped into the hall. Kyle started to follow, but then he stopped, turned back to Glenn and waved. As he struggled to keep his composure, Glenn waved back.

Once the door closed behind them, Glenn took a few moments to let everything he’d just heard sink in. It was incredibly humbling to realize how wrong he had been to think that Kyle had no value as a person. His refusal to see the young boy’s humanity instead of his disability was inexcusable. He stared at the ceiling and wondered how he could have been so narrow-minded and judgmental.

Finally, after running the events of the last week through his mind over and over again, he let it all go. He wanted to embrace the present because, thanks to Kyle, he had been given a second chance. Glenn knew that the rest of his life would be different because he now realized that no one was inferior or superior.

He had learned the undeniable truth that everyone is equal.

 

 

PERCEPTIONS

You are an important person, the result of a complex mixture of characteristics that combine to form your personality. You have both positive and negative qualities, strengths and weaknesses and personal likes and dislikes. This makes you totally unique and completely different from everyone else. You belong to the human family and yet you are an individual. You defy descriptions and labels because you are more than just a “type of person”. Each of us is convinced of our own worth. We each believe that the world would be changed forever if we were not present, and that is certainly true. We all play our respective roles in life, and without us things could not possibly be the same. These are the perceptions we embrace concerning our own lives.

But how accurate are the perceptions we have regarding people with developmental disabilities? To a significant degree, the quality of life they enjoy is based on how they are treated by others. That is why it is important to consider how perceptions that are not true can affect our attitude towards them.

  • Do we believe they are different?
  • Do we believe they can’t be understood?
  • Do we believe they can’t learn?
  • Do we believe they can’t be part of the community?
  • Do we believe they can’t be employed?
  • Do we believe they can’t be independent?
  • Do we believe they can’t be our friends?
  • Do we believe they are not equal?

All of these perceptions are wrong because they are not based on facts. They are just assumptions that focus solely on a single aspect of a person’s humanity. They fail to see the complete person who has so much to offer the world. Therefore we must learn to open our minds to the reality of what makes us human. An IQ score is not the determining factor of our value to society. We must look past the labels that are used to unfairly limit the potential of a person. Of the 7 billion human beings on earth, 3% are defined as having a developmental disability. That means that millions of people around the world have a label that follows them all of their lives. But there is so much more to a person than just a diagnosis that is imposed on them by others.

Unfortunately, our perceptions of intellectual challenges are sometimes completely off base. Just because an individual is nonverbal does not mean she doesn’t have thoughts, ideas and opinions she wants to share. We just have to find ways of assisting her in communicating. When an individual cannot count to 25 it doesn’t mean he can’t hold a job. We just need to make the necessary adjustments that allow him to be employed without the pressures of math. An individual who cannot stand for long periods of time can be accommodated so they can work while sitting. That is a simple adaptation that can allow a person to remain productive. If an individual has difficulty understanding proper hygiene, it is not a reason for him to be ridiculed. We just need to assist him in improving his daily living skills so he can avoid unnecessary illness. Whatever particular issues a person faces we can find workable solutions that will help them thrive and enjoy inclusion in their community.  

Each person with a developmental disability is a completely unique individual. They laugh and they cry, they feel joy and pain, and they have achievements and setbacks. They are optimistic and confident as they make plans and reach their goals. They rise up to face challenges, and they are rightfully proud of their accomplishments. They long to be as independent as possible. They want to be accepted for who they are. They want the opportunity to participate in all areas of society, and they want to be appreciated and considered important.

For the world to ever be a fair and just place, all life must be valued. Every person, no matter what their intellectual challenge might be, has the right to pursue happiness, to enjoy good health and to have a sense of purpose in their life. In order for this to occur we must learn to overcome our preconceived notions about how much a disability should be allowed to define a person, and ultimately we must have compassion for everyone.

We all know that life can be difficult under the best of circumstances. It should not be made even more demanding because of the unfounded misconceptions of others. Men and women who happen to have intellectual challenges are more than just their diagnosis. They are real people living real lives. It is up to us to look past the disability and see the humanity of each person. If we will do this the world will change for the better. Certainly those that have suffered for so long from intolerance and neglect will enjoy a dramatic improvement in their lives, but it will also have a positive effect on the rest of us. Nothing but good can come from embracing each individual as a complete human being worthy of understanding and acceptance.

We cannot allow a person with a developmental disability to have their life diminished because of other people’s perceptions.

 

 

ACCEPTANCE

As human beings we have an overwhelming desire to be accepted. We want others to feel comfortable around us so that we can enjoy inclusion in all the areas of life that we believe are important. We each do our best to fit in and to not stand out in a way that draws negative attention to ourselves. Every one of us has a basic need to be valued and respected for who we are.

However, we all experience moments in our lives when we do not receive acceptance. In such situations we often try to convince ourselves that it doesn’t matter what people think of us, but that is not true. When it comes to how we are viewed by our peers, we actually care deeply about the opinions of others. Everyone wants to be seen in the best possible light. We want people to have a favorable impression of us.

It is exactly the same for individuals with developmental disabilities. They also want to be acknowledged and appreciated. But it can be quite difficult for someone to believe that they deserve to be accepted when they’ve been told they are different, and they have been made to feel less.

If a person with an intellectual challenge is continually treated as if their life doesn’t matter, the rejection they experience can begin to make them believe they are not worthy of acceptance. This can lead to feelings of loneliness, and even isolation from the community. As their frustration grows their behavior can change, and in desperation they may attempt to be noticed in ways that are not socially approved. Being ignored by their peers can have a negative impact on their overall mental health.

Usually the main reason someone refuses to accept another person is because they believe that individual is not like them. In some way they seem different, and that alone is enough to label them as unacceptable. People with developmental disabilities know this line of thinking all too well. When someone refuses to accept you because you are nonverbal, because you have difficulty controlling your muscles, because you learn at a slower rate, because you cannot always manage your emotions or because of your physical characteristics, it is wrong. A human being cannot help the fact that they live with intellectual or physical challenges, any more than a person can choose their gender or ethnicity.

Ironically, it is frequently the case that those who have faced rejection themselves become the most accepting of others. Because they know firsthand how it feels to be marginalized, they go out of their way not to treat anyone else the way they’ve been treated. They know from personal experience how unfair it can be when others refuse to accept you for reasons that you have no control over. They are frequently willing to accept others without hesitation, even though they do not receive the same treatment in return.

Fortunately, when the excuses for not accepting someone with a developmental disability are broken down, it becomes obvious that what we might initially think are legitimate reasons actually have no validity at all. None of the issues listed above tell us anything about what kind of person they are. They do not describe their personality or give clues to their honesty or integrity. They do not provide any evidence concerning their capacity for friendship or their joy for life. They do not convey their kindness or their compassion.

For people with intellectual challenges, acceptance is crucial to having a healthy sense of self-worth. It gives them confidence and builds their self-esteem by making them feel valued and appreciated. It lets them know that they matter to others, and it provides the opportunity to have a positive impact in life.

That kind of acceptance can be shown through a warm handshake or with a pat on the back. It can be conveyed through a smile or a kind word. It can even be communicated by simply choosing to be with the person, in the moment, giving them your undivided attention. Almost any action or gesture that lifts another person up is a way of letting them know that you accept them as someone who is neither inferior nor superior but equal.

But for acceptance to occur, we must stop being judgmental and resist the temptation to jump to conclusions without the facts. We have to be willing to take the time to actually get to know someone. It is only when we open our hearts and minds to the realization that we are all the same that we truly learn to accept others.

By acknowledging the humanity of every individual, we begin to understand why each person, no matter what particular challenges they live with, is worthy of acceptance.

 

 

PARENTS

They are not saints, they are not superhuman and they are not perfect. The parents of children and adults with developmental disabilities are just ordinary people. They come from all walks of life. They can be wealthy, economically deprived or part of the middle class. They can belong to any religious faith or have no affiliation whatsoever. Their ethnicity is meaningless. They can be liberal, conservative or moderate in their political views. They can be any nationality on earth, and their age can fall anywhere over a span of six decades. However, they do share one special bond that other parents may not understand. They have faced a serious, sometimes frightening, diagnosis regarding their child that has led them to a deep appreciation for what is truly important.

They have been tested, and they have risen to the occasion.

For some, the life they lead was a choice. They lovingly made the decision to adopt a child with a disability, or they courageously decided to go ahead and give birth to their baby after a diagnosis of Down syndrome was made. But many were thrust into this role with no advanced warning and with no idea about what the future held for them and their loved one.

To go from the hopeful expectation that a baby would have no health issues, to the realization that a son or daughter could have lifelong challenges to deal with, creates a torrent of powerful emotions. Mothers and fathers handle these intense feelings in different ways. Some immediately welcome their child into their families, without regard for the changes that will be brought into all of their lives, while other parents struggle to adjust to their new reality.

It can be a difficult time as they face a future that is quite different from what they expected. The adjustments they are forced to make in their own lives and in the lives of other loved ones are just the beginning. All of their plans have been permanently altered. There is no going back to “before”. Most of the decisions they make in the years ahead will hinge, at least in part, on how they will affect their child. A day will not go by where they can completely forget about the responsibility that has now been given to them.

It is a pressure that rarely subsides because raising a child with an intellectual challenge is not an easy road. There a moments of pure frustration and searing anger along the way. For some parents there are times when they just don’t understand why they have been placed in this position. They feel like giving up. They believe that caring for the particular needs of their child is adversely affecting the rest of their family. These are all genuine emotions that are completely valid. To have these thoughts is not wrong. To have doubts and worries is not wrong. To sometimes wish that your life was simpler with fewer constraints is not wrong. It just means you are having human reactions to what, at times, can feel like overwhelming circumstances.

But for all the difficulties and heartaches, there are many other moments that make the tears, the frustrations and the sacrifices more than worthwhile. When a child begins to communicate either verbally or in some other creative way, when they become ambulatory with or without the need for physical supports, when they begin the educational process and when they are older and they find employment, these and many other milestones are celebrated with intense pride and unbridled joy by the parents who played such a crucial role in making them happen. But above all else, the one thing that makes the journey of life with a child who has special needs so rewarding is the love.

There is a purity of affection that an individual with an intellectual challenge has for a parent. There is a complete and total trust between that child and their mother and father. It is a bond that will last through all of their lives, and it will provide them with the strength, the willpower and good humor to face the many obstacles that society will place in their path. For each child that you see accomplishing more than was ever expected, there is a loving mother, father or both who made incredible sacrifices to ensure that their son or daughter received the education and supports they were entitled to. When an adult with a developmental disability is able to lead a life that is enriching, they have, for the most part, accomplished this with significant parental help.

In the end it comes down to this; two human beings create a third. The result of that union, no matter how society may label them, is a beautiful baby that has the same rights as anyone else. Whatever medical or psychological terms may be applied to that child as they are growing up, the fact remains that they are a living breathing person who deserves to be loved. When it comes to their worth as a human being their IQ does not matter. Their motor skills are not important and their cognitive abilities are meaningless. They are simply someone who is alive at this moment, on this earth, with everyone else. They deserve the same opportunities, as we all do, to live the best life possible, which includes being safe and healthy. A good deal of this will be accomplished through the dedication and devotion of their parents.

The men and women who nurture and support their children from birth through adulthood know that it is a commitment of pure love. The parents are the unsung heroes who often remain in the background gently guiding their children as they struggle for acceptance and success. Their reward is the knowledge that they have given their all to see that their child is living the best life possible. Because of those efforts they deserve our admiration and respect. In most cases it was not a life they volunteered for, it was just the life that was handed to them, and they responded with courage, honesty, patience, goodness and compassion.

We should all embrace those characteristics because they represent the very best of humanity.

 

 

IQ BIAS

Do you know what your IQ is? Do you feel it is the most important thing about you? Would you want your entire life to be judged by that one single number? Does it accurately describe your personality or temperament? Should your opportunities or choices be limited by your test results? Would you want others to think less of you if their IQ was higher?

These are the issues faced by those with intellectual challenges. For some, their lives have been unfairly limited by this one particular measurement. The weight it has carried has, in some cases, determined the direction of their lives. Often it has been the overriding factor in decisions that may or may not have been correct or in the best interest of the individual. The power of that one number cannot be overstated when dealing with the lives of the men and women who are at the mercy of those who make judgments and recommendations based on the results of this data.

No one should have their life adversely affected just because of how they performed on a test. We do not all fit into neat categories. Many people do not endure the stress of the testing process that well. For some, a simple lack of focus can skew results. Others do not feel comfortable in unfamiliar surroundings creating anxiety which produces less than accurate scores. This is not an attempt to make excuses for how people do on these exams, but it is an effort to point out that the results can be affected by a variety of factors.

In the world of developmental disabilities, IQ tests play a prominent role in determining possibilities, predicting outcomes and in setting realistic goals. Of course some people place more emphasis on the number than others. State agencies often use test results as part of the criteria for deciding who is eligible for aid and services. Health providers use it as a screening tool to help them focus more clearly on the ability of an individual to function at a certain predetermined level. In both of these cases the test results are used as part of a plan to improve the lives of those who it is felt could benefit from extra levels of care and support.

However, some in the general public view a lower IQ as a basis for intolerance, prejudice and neglect. Individuals who are perceived to be below a certain level of intellectual capacity become targets for exclusion, cruelty and abuse. But what does it say about the abuser’s own intelligence if they lack the ability to feel compassion and respect for those who deserve to have the same rights and opportunities as everyone else? What good does it do to have a higher IQ if your behavior is still guided by ignorance and insensitivity?

I am constantly amazed by how some people believe you cannot interact with or be friends with someone whose IQ is different from yours. Why not? You have more in common than any differences that might exist. Friendship is built on trust and respect. It develops through tolerance and understanding. It thrives on non-judgment and acceptance. These are qualities we should all be seeking. The world would be a much better place if we would all embrace these truths and apply them in each of our own lives.

When we examine the true significance of measurable intelligence we must consider how it relates to our humanity. Do we honestly believe it is the most important factor in determining the value of a person? Certainly it can be an indispensable tool in delivering the appropriate supports to a particular individual, but we can never allow ourselves to lose sight of the human being represented by the test score. Each person must be viewed in total and must not be reduced to a number that cannot provide a completely accurate representation of who that man or woman is or what they can achieve.

That is why it is so critically important to remember what IQ does not measure.

It does not measure how kind we are, how generous we are or how forgiving we are. It does not measure our sense of humor or the acceptance we find through friendship. It does not measure our enthusiasm or determination. It does not measure the joy we have for life. It does not measure our ability to dream or to help others find their dreams. It does not measure our honesty, our gentleness or our courage. It does not measure the happiness we bring into this life. It does not measure our sense of wonder, our sense of adventure or our imagination. It does not measure the impact we can have on the world. It does not measure our ability to love and to be loved. And most importantly, our IQ does not measure our worth as human beings.

We can never forget that each individual in society, regardless of a test score, is our equal. We all have the same rights, and we all deserve to live our lives free of the stigmas attached to tests, evaluations and exams.

No one, under any circumstances, should have their entire life defined by a single number.