Tag Archives: disability

Who Decides!?

A large number of free wallpaper download, including mobile wallpapers, desktop wallpaper, computer background, 360x640, 640x360, 240×320, 1280×720, 320×480, 480×272, 120×160, 1200×800, 800×480, 960×800, 960×854, PSP Backgrounds, Nokia, 5800, n97, 5230, 5530, n8, iPhone, Blackberry, Htc, Samsung, Motorola, Sony Ericsson ...There’s a battle raging in the UK right now over the life of a little boy. Eleven month old Charlie Gard was born with a rare genetic disorder which, up to this point, has not allowed him to go home. Charlie’s parents have raised over a million and a half dollars to bring him to the USA for an experimental treatment in a New York hospital .

The Pope has even offered to bring the child to a Vatican pediatric hospital in Rome, but the UK hospital took the parents to court and a judge ruled, along with the medical establishment, that Charlie will have no ‘quality of life’ and therefore deserves the right to ‘die with dignity’. He will not be allowed to leave the facility.

I’m trying to decide if this is the evil side of socialized medicine or the reprobate minds of medicine playing god. Maybe it’s both. Since when does a hospital get to tell parents doing everything possible to help their baby, “NO!”?

The term ‘quality of life’ is thrown around extensively in relation to disability. Somehow people in the mainstream, think they have the right to decide what quality of life looks like, acts like and is. It’s one thing if we want to decide this for ourselves and possibly our own loved ones but when we start forcing our definition on others, there’s a problem.

Those of us who love kids with special needs, quickly learn what quality of life really means. They bring quality to life in all the ways that matter most, helping us redefine life’s priorities. All the shiny, glittery attractions that spell success in the world begin to pale as we share life from their point of view.

My son, Jon is content living life his way, though it may not be conventional or understood. When those of us considered ‘normal’ start deciding those considered ‘not normal’ have no right to exist…well, if we know history, we also know where this thought process leads.

Charlie’s parents should be allowed to and applauded for doing everything they can to help their child. If he doesn’t survive that will be God’s decision, not man’s, which is exactly how it should be.

Please pray for the family of little Charlie Gard.

On Whose Lives Matter

Jon SuaveThe topic of lives that matter has been at the forefront of news lately, so I might as well add another group to the fray, one that receives little to no headlines, attention or protests.

In 2013, Robert Saylor, a man with Down syndrome died of asphyxiation after three off duty policemen moonlighting as security guards, restrained him to the floor in handcuffs when he refused to leave a movie theater. His caregiver’s pleas for understanding were apparently disregarded when Robert wanted to see the movie again.

Last week, Arnaldo Rios Soto, a man with autism, watched police shoot his caregiver on a Miami street. Arnaldo had wandered from his group home carrying a favorite metal toy truck in his hand. Someone called the police when they saw Arnoldo, describing him as a man with a gun, acting erratically. His caregiver, Charles Kinsey, was trying to coax him out of the street to safety when police arrived. As Kinsey tried desperately to explain Arnaldo had autism and the object in his hand was a toy truck, an officer discharged his gun at Arnaldo shooting Kinsey instead.

Police officers have protocols to follow and tough judgment calls to make based on their best assessment of a situation and the developmentally disabled rarely fit the cooperation profile. During one of Jon’s wandering episodes he was handcuffed and held in the back of a police car when he failed to answer an officer’s questions or supply his name. To the untrained, the developmentally challenged can be perceived as dangerous and they experience more misunderstandings with police than any other population.*

This week in Tokyo, Japan, Satoshi Uematsu a former employee of a residential facility for the disabled, broke in during the night and stabbed nineteen sleeping people to death and wounded twenty five more. Earlier he had written a letter that stated, “all disabled should cease to exist,” and “the disabled can only create misery.”

The first people exterminated during Hitler’s ‘purify the race’ campaign were not Jews, but the disabled or feeble minded, as he chose to label them. Our Jon would have been the first to die, had we been alive in that decade. It seems no population is exempt from injustice and violence in a world where human hearts trade fear for discernment or choose evil over righteousness.

A recently released movie, “Me Before You,” based on the novel by the same name, is a fictional story of a handsome, athletic young man from a wealthy family who is spine injured in an accident and becomes a paraplegic. It’s meant to be a tear jerker romance, but, of course, I found myself watching this story through the filter of disability and its connection to the value of a human life. The final message of the movie was disappointing, (spoiler alert!) the life of a disabled person is not worth living so the young man travels to Switzerland to die by assisted suicide.

Significance is defined as the quality of being important, large enough to be noticed or have effect or influence, to be worthwhile, valued. Everyone longs to matter. WH Auden, a poet from the 1930’s wrote, “..for who can bear to feel himself forgotten.”

We celebrate celebrity, worship achievement, want to be a ‘somebody’ and leave our mark on the world; a bigger than life personal graffiti wall that boldly states “I was here!” Our culture glorifies importance based on many factors: success, fame, wealth and influence, to name a few.

Disability that achieves the earmarks of worldly success is glorified, but not all disabled persons contribute in ways others consider worthwhile. Does this make their lives less valuable? I don’t have answers to all the tough questions about disability in the world, but our answer to the question of value usually depends on our worldview.

This is mine: “God said, Let us make man in our image, after our likeness..” (Genesis 1:26) and “the Lord God formed man of the dust of the ground, and breathed into his nostrils the breath of life; and man became a living soul” (Genesis 2:7).

If we believe God is the creator, author and beginning of all human existence, there can never be any doubt all lives matter. When Jesus told us to “love your neighbor as you love yourself” (Mark 12:3), He didn’t offer any exceptions, in fact He stated no other commandment was greater. He gave the example of two people groups embroiled in a cold racist war with one another in the parable of The Good Samaritan (Luke 10:25-37), to illustrate what this love looks like.

Violence is a heart issue and will never be resolved until these words of Jesus are understood in the heart of every person and become standard practice.

If we are breathing God’s air on this planet He made, His life is in us, regardless of race, color, gender, preference, ability and age; we are His precious treasure. What others see when they look at us, our outward appearance, is only the packaging for the treasure inside and the wrapping, as beautiful as it might be, is never valued over the gift it holds.

We are significant because God thought we were worth creating. He paid for our life with His, and extends nail scared hands to all humanity as proof of His investment in us and as a personal guarantee that we are top priority.

Jon matters. You matter. I matter. God said so.

And that should be good enough for all of us.

Psalm 139:14-16 “I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well. My frame was not hidden from You, When I was made in secret, And skillfully wrought in the depths of the earth; Your eyes have seen my unformed substance; And in Your book were all written The days that were ordained for me, When as yet there was not one of them..”

Psalm 22:10 “ I was placed in your care from birth. From my mother’s womb you have been my God.”

*”Disabled people are four to ten times more likely to face violent crimes than the general population, including police violence, sexual assault, hate crime, bullying, robbery, and murder. According to the recent Ruderman report on media portrayal of police violence towards people with disabilities, at least one third to one half of all police violence cases covered by the media involves the disability community. ~ “#BlackDisabledLivesMatter vs #AllDisabledLivesMatter” by Pharaoh Inkabuss, blackautist.tumblr.com~

The Unapplauded Hero

super-hero-cape-flying-SupermomI met a Hero the other day.

She is twenty five years old.

She’s put aside her own hopes and dreams to care for a chronically ill family member.

She’s had to quit her job because the care needs are so time consuming.

At an age when she should be having fun, dating, building a future, career or a family of her own, she cares full time for someone in need.

She cries when no one is watching.

She wonders what the future holds.

She worries what will happen to her loved one.

She worries what will happen to herself if something happens to her loved one.

She feels guilt for wanting more.

She doubts God at times.

Her faith wavers even as she continues believing.

She is a full time caregiver. Someone desperately needs her. She is there.

She is learning at a young age the hardship and beauty of a laid down life.

If you are a single young man you might want to consider a woman like her.

She won’t have much time to date, but she certainly knows about loyalty, selflessness and love; all the qualities that make a great spouse.

She’s the unapplauded in the background. One who performs the mundane today, tomorrow and the next day.

But mundane is greatness when executed so selflessly.

Those who are faithful in little things will be rewarded with much (Matthew 25:23, Luke 16:10).

She will be honored for her faithfulness.

Man may overlook.

But God sees.

He sees it all.

He sees her.

She is brave.

She is strong.

She is incredible.

And He calls her Beautiful.

Should All People With Developmental Disabilities Be Free to Make Their Own Choices?

UN-convention-disability-12.5.12“People with even the most severe disabilities have the right to make their own decisions, no matter if their choices are risky or ultimately turn out to be mistakes, a United Nations panel says in new guidelines to nations.”

Read about it here; another bureaucratic idea that looks great on paper (especially one with such vague language it can be interpreted a zillion ways) but won’t work in reality.

Here are a few reasons why:

1. I believe everyone should have freedom of choice and some developmentally disabled folks are quite capable of making good choices on their own. Guardianship is still an important safeguard for those who can not. Such a loose policy that attempts to place everyone in the same category is foolish if not dangerous.

If Jon was allowed to make all his own choices he would never take his meds, shower or change his clothes, get a haircut, go to the doctor or dentist. He would most likely wander off down the street never to be seen again.

2. Someone has to pay for those choices. Who? The UN? Government budgets, both federal and state are tight. Wait lists are long. “Nationally, almost 317,000 people remain on waiting lists for home and community-based services…based on data from 2012, the most recent year available.”

Even those who receive disability funding usually can’t afford costly housing and other expenses for their disabled family member. Money and services are limited depending on geography and families are often one income earners or struggling single parents because someone has to be at home for the caregiving.

3. Are all parents and caregivers devoted and loving? A small percentage may not be, but these loosely worded conventions can be a slippery slope that eventually steamroll families and caregivers who most love and best know those they care for.

Someone in a far away office, creating regulations about our children’s lives and ultimately our own lives doesn’t sit well with most. I can’t help but wonder who the ‘supporting decision makers’ would eventually be.

4. “Article 12 of the Convention affirms that all persons with disabilities have full legal capacity.” It’s not clear if this translates to persons with limited mental function who commit a crime being tried as any other adult? Will no special consideration be afforded those with diminished understanding? I doubt anyone wants our over burdened prison system to become the new residential facility for the disabled who break the law.

The United States signed the United Nations Convention on the Rights of Persons with Disabilities, as did hundreds of other countries, but so far has been unsuccessful in ratifying it.

So many blanket statements and one-size-fits-all propositions exist in this treaty, I would hope Congress and The Senate would review it with common sense reservation and revision, demanding specific definition of terms and then consider if it needs to be ratified at all. 

There’s certainly a great need for improvements in servicing our disabled population but shouldn’t it be done on state, local and national levels instead of by international regulation? For those of us who believe in the sovereignty of the United States, and all other nations, the answer should be clear.

 

 

The Top Ten Emotions of Parents Raising Children with Disabilities

I’ve joined a Facebook page called PROWD (Parents Raising Offspring with Disabilities), that defines itself as being “birthed out of the needs of those involved in caring for children with special needs and disabilities. It is intended to be a “family” who support, network, and assist one another on their journey.”

It gives parents of children with disabilities a place to receive support and encouragement from each other, a place to share victories big and small, to unload and get real about the challenges caring for a disabled child brings without fear of judgment or criticism, a place to not be alone in our struggles, to swap treatments, coping skills, helpful ideas and to find other parents locally for forming personal relationships if desired.

Parents from all over, dealing with all types of disabilities and kids of all ages frequent this page. It is an online support group for people who expend so much time, energy and emotion on never-ending care, attending a literal support group would be impossible.

Recently someone on the page posed this question to parents: What is the primary emotion that outweighs all others in your household?

The following are the top ten out of one hundred and twenty eight responses:

Frustration 35

Love  20

Loneliness/Isolation17

Anger  16Woman-with-Out-of-Order-Sign-on-Head

Anxiety  16

Worry  14

Stress/Tension  13

Tired/Exhaustion  12

Fear  10

Overwhelmed  8

The majority of fear responses were related to the child’s future and what will happen when the parent is no longer able to care for him/her.

Some of the lesser rated responses were inadequacy, guilt, sadness, uncertainty, restricted and even depression. There were some positives as well: laughter, hopeful, thankful, proud, happy, peaceful and it was good to see love at the top of the list.

We love our kids no matter what other emotions raising them may evoke, but no one denies parenting is some of the hardest work we do in life. All parents feel all these emotions at various stages of the child rearing years. The commitment and dedication required is both relentless and rewarding.

For the parent of a disabled child, these emotions can be constant and life long. Some research studies have shown parents of kids with special needs are under the same stress as a combat soldier, especially in cases of severe autism or multiple diagnoses both medical and cognitive. These parents are often in a state of high alert, short on sleep and unable to take time off to relax and unwind.

The stress load is a recipe for disaster for caregivers who worry about everything except themselves.

If you’re out somewhere and see a child exhibiting poor behavior, don’t assume the child is just a “brat” and the parent isn’t doing their job. Give the benefit of a doubt and remember there may be more to the story than what you’re observing.

If you are blessed to know someone who parents a child with disabilities take a minute to encourage them. You needn’t tell them they’re special (usually not feeling that) or angels (usually not being that) or any of the other “cliche” statements often made, just give them a hug and tell them what a great job they’re doing.

And don’t forget to pray. Ask God to fill them with strength and endurance far beyond their own.

Your acknowledgement, encouragement and prayer could be the reinforcement that carries a struggling parent through another day.

A Tale of Two Kingdoms

noaccessDisney has changed it’s theme park leniency for disabled guests because of the behavior of a few able bodied folks who decided to exploit the kindness extended to those who rely on it.

Apparently families with disposable income have been hiring disabled people or those who pretend they are, to take advantage of Disney’s policy, allowing disabled guests to move to the front of attraction and ride lines.

http://articles.orlandosentinel.com/2013-09-27/business/os-disney-disabled-guests-policy-20130926_1_walt-disney-world-radiator-springs-racers-disney-california-adventure

It’s been a few years since we’ve visited  Disney’s Kingdom, but when our boys were young we went frequently. It was one of the perks of living in Central Florida.

Jon who walks agonizingly slow, could handle about an hour on his feet, before he’d had enough and would plunk down on a sidewalk, in the middle of a walkway or a long line, refusing to get up. A few times we had to circle him to keep him from being trampled.

He also gets irritated when jostled in a crowd and would bolt to find a quiet corner of refuge until everyone around him disappeared and we missed show times and ride starts because of it.

Eventually, we decided to rent a wheelchair and later bought one to bring along, which made our outings to Disney more fun and hassle free. The wheelchair got Jon and us through the park faster and the ability to go to the front of the line helped us avoid Jon’s crowd aversion.

Under Mickey’s new policy, families are now going to have to go to Fast Pass kiosks and come back to events at start times. For families who have kids with mental delays, autism and medical issues this could be the tipping point of a “just not worth it” way to spend a day.

Paying hefty per person admission has been a bad deal for most of our families who usually can’t spend an entire day at the park anyway. We’re fortunate to get several hours in before an issue that is part of our normal every day life forces an exit. This add-on will only delay already precious time.

For some, ‘The Happiest Place on Earth’ might not be as happy as it once was thanks to a few who used something not meant for them to their own advantage.

Disney has taken the posture of the school teacher who punishes the whole class for what one kid did. But many policies of business, government, public systems and service have originated from the abuse of a few and prove the far and wide ripple effect our actions have on others.

It’s not fair. Unfortunately is it not unusual, and originates back to the beginning of time.

All the way back to the Garden of Eden.

Romans 5:18-19 tells us, “..just as one trespass resulted in condemnation for all people, so also one righteous act resulted in justification and life for all people. For just as through the disobedience of the one man the many were made sinners, so also through the obedience of the one man the many will be made righteous.”

The sin condition started with the disobedience of Adam and Eve and all of us were affected.

Jesus came to cure us, to offer a way out, a solution, an escape.

I doubt The Magic Kingdom will budge on this new policy change. Their interest in profits will outweigh the needs of their disabled customers.

But the top priority of Jesus is people. Me and you. He came to rescue the sick and the lost.

His life, death, resurrection and ascension, enacted a divine policy for free admission and an eternal pass to hang out in God’s Kingdom.

No waiting in line. No disability. No wheelchairs. No pain. No crying. No guilt. No shame.

No worries about missing out or someone stealing our place in line.

And to think, all we have to do is believe in Him. Because of Christ we are special, we are loved, we are blessed.

I have my admission ticket.

How about you?

“…the free gift of God is eternal life in Christ Jesus our Lord.” Romans 6:23

, “For the Son of man is come to seek and to save that which was lost.” Luke 19:10

, “… the Son of man came not to be ministered unto, but to minister, and to give his life a ransom for many.” Matthew 20:28

 

 

 

Recycled Dreams

green-recycle-symbol-8590573Have you heard about the fifteen year old with autism who has already completed his masters in quantum physics at Purdue University and is now working on a PHD at some exclusive program in Canada, or the thirteen year old with Down syndrome who speaks four languages, plays the violin and is an international spokesperson for the Down Syndrome Congress?

I read about these two impressive young men last week and admit to having a momentary lapse of longing for my son, Jonathan, to be one of them.

Many of our special needs kids accomplish more than ever thought possible in previous generations. With this awareness comes hope that our child will do incredible things, rise above the bar and achieve a higher level that no one with their particular ‘label’ has ever reached before.

Though we may wish it, our disabled child may never become the prodigy we dream of, anymore than our typical kids might grow up to become President. It doesn’t mean they can’t but often they don’t, because they are each unique individuals.

Once we go through the initial stages of accepting our surprise assignment, parents do everything possible to help a special needs child reach their full potential. We explore treatments, therapy, classes, lessons, schools, programs, funding, activities, medications, supplements, nutrition, diets, surgeries, support groups.

We read, study, educate ourselves, become our child’s fiercest advocate and mainstream them into society as much as possible, taking them with us everywhere – to restaurants, stores, church and on vacations in an attempt to teach them what life looks like from our point of reference.

Some things work, others do not. There is no way to look into a crystal ball and see our child’s future. From the moment we own the diagnosis we begin to learn the art of balancing recycled dreams. Life with our child becomes a one day at a time journey of hope.

The reality is, while we think we’re preparing and teaching them to be part of the real world, our challenged child is pulling us deeper into his. We become the student, learning qualities such as endurance, patience, acceptance, compassion and unconditional love.

These unprecedented challenges, gradually recreate us into someone fierce yet loving, wise but teachable, accepting yet undefeated, slow to judge but quick to notice injustice.

By the time our child is an adult, this special education has changed us so drastically, we don’t even recognize the person we’ve become. We have revamped and recycled our hopes and dreams for them and ourselves so many times the old us no longer exists.

As a minister’s wife I’ve been asked the hard questions many times. Why does God send people with disabilities into the world? Why would a loving God make a child and family live through the lifelong challenge that creates?

After thirty plus years of being my son’s mom, I don’t pretend to have a lot of answers.

And I don’t need to, not anymore. I’m learning to place my trust in a Heavenly Father who knows all things and informs me on a need to know basis.

One thing I DO know, life with Jon has changed me. I’m not anywhere close to being the person I was the day he came along.

Throughout the years, of a difficult but most wonderful metamorphosis, I have to admit…

I like this me so much better. 

“When we are no longer able to change a situation, we are challenged to change ourselves.” ~Viktor E. Frankl

2 Corinthians 3:18 “But we all, with unveiled face, beholding as in a mirror the glory of the Lord, are being transformed into the same image from glory to glory, just as by the Spirit of the Lord.”

Romans 5:2-5 “Through him [Jesus] we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God.  Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope,  and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”

Turn It Off – Should Down Syndrome’s 21st Chromosome Be Deleted?

light switchScientists have been messing with stem cells in a laboratory and have figured out how to ‘turn off’ the extra chromosome in Down syndrome, a recent finding revealed.

http://www.disabilityscoop.com/2013/07/18/in-chromosome-turned-off/18342/

It could be years before a treatment of this type is people ready, but the possibility sent a wave of blog posts and commentary through the many online disability communities and families that care about someone with Down syndrome.

In the various discussions and commentary I surfed through, the difference in opinion on the topic between those who have young children and those who have older teen and adult children, is very interesting.

Most parents of toddler and elementary age children were certain they wouldn’t want the treatment if it was available. Parents of older children weren’t so sure. They’ve dealt with their child’s limitations long enough to see the overreaching effects into adult life.

The best way to illustrate my viewpoint is to tell you a story that took place about fifteen years ago.

Around the age of ten, Jon started telling us when he was old enough to drive, he wanted a red Jeep. Anytime he saw a red Jeep he would smile really big, point to it and say, “I’m having that!”

We were hesitant to suppress his dream. Maybe he would be one of the few people with Down syndrome who could someday handle the responsibility of driving. After all, Jon’s generation was the first to prove people with disabilities could do more than anyone expected. So we let him keep the hope of driving a red Jeep, alive.

When Jon was about eighteen, friends of ours needed a second vehicle and decided to purchase a Jeep. Our families had been close knit since Jon and their oldest son, Nathan, who was a few years younger than Jon, were preschoolers.

The Jeep, which just happened to be red, was claimed by Nathan, as awesome transportation to ‘be totally cool’ in while learning to drive.

We lived in an HOA with a community pool and one hot summer day, Nathan called and asked if he and his younger brother, Matt, could come over and go to the pool with Jon and our youngest son, David.

My boys put on their swim gear, grabbed towels and the three of us went to sit on the front step and wait for Nathan and Matt to be dropped off at our house so we could walk to the pool together.

A few minutes later a red Jeep came around the corner and down the street. Jon stared in awe as the vehicle went by and pulled into the driveway on the far side of the house.

I watched as he noticed who was in the driver’s seat and what I saw in his face made my heart sink.

Nathan was driving. As he turned off the engine and climbed down from his perch with a smile as bright as the hot sun, Jon turned to me and said so quietly I barely heard, “Nathan gets to drive a red Jeep?”

D-Day had arrived.

I didn’t know what to say. Mike and I had realized a few years back that Jon didn’t and probably wouldn’t ever have the quick thinking, instant decision making, comprehension and coordination skills needed to be a responsible driver.

While he was still talking about the day he would drive his red Jeep, we were trying to figure out how to tell him that he never would.

We went to the pool for the rest of the afternoon and the boys had a good time together. It seemed that Jon had forgotten about the red Jeep and Nathan’s driving, so I put it out of my mind too.

The next morning, just as I stepped out of the shower, David banged frantically on the bathroom door and started yelling that I needed to come. “Right now!”

I threw on my robe and ran downstairs just in time to see Jon trying to back my car out of the garage.

He had helped himself to the keys and was behind the wheel, stomping on the gas, then the brake, gas, brake, gas, brake. With tires squealing and the car lurching, he had managed to back into the middle of our dead end street and run into the garage while doing so.

We sat Jon down, had the heart breaking talk with him in simple terms he could understand. It is one of the few times I’ve ever seen my son cry.

We cried with him.

A few days later he tried out his driving skills again. This time backing my car into the street, and hitting Mike’s company supplied car parked in front of the house, as he pulled forward.

We never hung our car keys on the hook by the garage door again and something changed in Jon after that.

A piece of that innocent and carefree Jon disappeared because he knew.

He finally understood that other people got to do things he couldn’t and he knew why.

And knowing that he knew was almost more than this mother’s heart could bear. My eyes cried and my heart ached for my boy again, as it has many times through all the years of loving him.

Jon has not been a little boy for a long time. I don’t know if he ever thinks about the red Jeep anymore.

He’s a man now but he stopped talking about it years ago.

And though I love him just as he is, I would do anything to remove the limits he lives with.

If there was a treatment that would guarantee my son’s ability to drive his red Jeep, would I consider it?

Absolutely!

If there was a way to open all of life’s possibilities to him, would I consider it?

Definitely! I’d do it in a heartbeat and be there for him if he needed me, just as I am now.

I’d do it because I’m his mom.

I’d do it for love.

The G Word

We now have the R-word, happily joining the demise of the N-word, at least in the halls of government.

In 2010 President Obama signed Rosa’s Law mandating the term ‘intellectual disability’ replace ‘mental retardation’ in all federal health and education policies.

As of this month Social Security has dropped the language and in Florida, our state of residence, Governor Rick Scott followed forty other states by signing a bill, in February of this year, removing ‘retardation’ from state statutes.

The clinical definition of the word retarded is:  slow or limited in intellectual or emotional development or academic progress. In its simplest form it means, to slow down by preventing or hindering advance or accomplishment, to impede.

I’m not bothered by the R-word much anymore. Though he may be slow in many undertakings, our son, Jonathan, and others like him are so much more than the definition of the words that label them; they are people first with individuality, personality, feelings, wants, hopes and dreams just like all of us.

Those who make an effort to know them understand this.

The morning following our firstborn’s arrival in May of 1980, the pediatrician came into my hospital room to give me the news.

Our baby had Down syndrome.

When our son was born, the use of the word mongoloid, which for decades inappropriately described people with Down syndrome, was declining and being replaced with the last name of the British doctor, John Langdon Down, who first classified the characteristics of the syndrome in 1866.

Up to that point, I had limited knowledge and exposure to people with mental disabilities. The law providing disabled children a public education wasn’t passed until the year 1975, two years after I graduated from high school and in previous generations the majority of disabled children were hidden away at home or put in institutions never to be seen again.

I had no idea what Down syndrome was; had never even heard of it.

“What is that?” I asked the doctor, hoping it was some minor newborn problem that would go away in a few days .

“A mongoloid,” he answered, the inflection of his voice rising at the end of the word as if asking a question.

He looked at me like he hoped I knew what that meant.

I did.

That word sent a jolt of fear deep into my very core. I remembered catching brief glimpses of “mongoloid” people. Images of a young man who attended the church I went to as a child immediately scrolled through my mind.

‘But we don’t like to use that term anymore,’ the doctor explained, ‘’Down syndrome describes the condition and its various symptoms better. I’m sorry, but you need to be aware that there is no cure for this and your child will be retarded for the rest of his life.”

In just a few sentences, I had heard every word available at the time, in medicine and society, to categorize my baby. In that life changing moment such terminology came only with the realization that I was totally unprepared for what the future might hold for us and our newborn son.

I had a lot to learn.

Years later, our youngest son came home on a college break, bringing a group of friends with him; a mix of guys and gals. As we gathered around the table for an evening of popcorn and board games, the random banter and laughter of youth reverberated through the house.

At the height of their silliness, one of the guys made a funny comment that sent everyone into laughing fits. One of the girls flippantly responded by telling him, “You’re such a retard.”

Suddenly, silence halted the clamor.

In the college lunch hall the conversation and laughter would have continued without a thought. But here, as guests in Jonathan’s home, sitting at his family’s table, laughter quickly changed to embarrassment, with the immediate realization of what had been said.

Red faced and tripping over her tongue, the girl began apologizing profusely.

She didn’t mean to be hurtful, I got that. It was an expression, something kids say to each other and in that context the word was a synonym for acting dumb or ridiculous.

I wasn’t upset, but told her she needed to think how Jon would feel if he had heard her. Fortunately he hadn’t.

The word, retard, had been used toward him in a derogatory context and he only knew it as a put down. His reasoning and processing ability is very literal and it’s often difficult for him to separate words based on context. The framework for forming the multiple nuances of a word, are usually lost on Jon.

I hoped it was a lesson she and the other students present that evening, never forgot.

Legislating behavior doesn’t change who we are on the inside and playing politically correct word games does nothing to change the heart of a person who chooses to degrade a word from its original definition into a weapon of insult.

If we simply value every God created human life, treating others the way we want to be treated, and think about the impact of our words, there would be no need to sign laws to send words to the dictionary scrap heap.

We are called to speak blessing not condemnation. Peace not strife. Encouragement not injury.

Forget N and R words!

Solve the problem.

Communicate the G-word to everyone, everywhere.

 GRACE!

There’s no law against that one, at least not yet.

Let your conversation be always full of grace.. Colossians 4:6

Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers. Ephesians 4:29

 

 

 

 

If I’m So Special Why Don’t I feel Like It?


I’ve heard the word ‘special’ directed toward me as a mother for many years, since our first child was born with Down syndrome then later developed autism. 

“God gives these special kids to special people like you because He’s knows you can handle it.”

When you ask expectant parents whether they are hoping for a boy or girl the most common answer is, “I don’t care as long as the baby is healthy and normal.”  

I have never heard anyone say, “Oh either is fine, but I’m really hoping we have a special child!” 

Other than the few amazing heroes who willingly adopt disabled children, no one really longs to have a disabled child. The irony that you are suddenly special if you get one has always puzzled me.

Regardless, I know people mean well and are trying to be kind and encouraging so I usually smile and move on with the conversation.

On especially stressful Jon days, when I’m not much in a “Yahoo!” frame of mind, I’ve thought of asking (but have never done so) those who tell me how special I am, “Truthfully now, would you feel special if your child was born with ____________ (fill in the blank with any disability)?”

Our son, Jonathan, displays frequent resistant behaviors that can be challenging and one morning I remember, was particularly difficult. All directives and attempts to get Jon to school on time were met with opposition and finally resulted in Jon locking himself in the bathroom and refusing to open the door. 

I drove him to school everyday and by the time we arrived – late again – I was incredibly stressed and on the verge of tears.  

David, our youngest child, and a friend who was visiting from another state, accompanied me. We had made plans to spend the day at one of Central Florida’s theme parks, so after Jon was finally delivered to his classroom, we headed to the nearest store to purchase a few items and visit the ATM. 

I parked the car and the three of us were walking toward the store entrance when I saw him, a silver haired man wearing a bright orange vest and a big smile. He was holding a plastic container for the obvious purpose of taking donations. 

I was still revved up from my morning encounter with Jon, taking deep breaths and forcing my mind to move on to calmer thoughts and the fun day ahead.

As I walked past the orange-vested man he thrust the container toward me and in a most kind and gentle voice asked, “Maam, would you like to donate to the disabled this morning?” 

This unfortunate guy had no idea how poorly timed his inquiry was. He had no clue what I had just been through or what he was in for.  I stopped mid-stride, turned and glared at him.  

That simple question was the last straw, as the saying goes.  All the pent up frustration still swirling around inside exploded out of me like hot lava from an erupting volcano.  

Like some sort of lunatic, I yelled, “Oh sure! I’d just love to,” right in his face.

I ripped open my purse, clawed through my wallet, grabbed the first available paper bill I found and crammed five dollars inside that container so forcefully the surprised man almost dropped it on the sidewalk.  

Then I loudly declared, “There you go sir, something for the disabled.  Now what do you plan to do for their mothers?!” as I turned and stomped inside the store leaving him with his mouth hanging open and my free paper flower dangling from his fingers.

I didn’t feel very special that day. Still don’t for that matter.  If I am entirely honest, I often feel very inadequate and way too tired for this job. 
  

Jill Kelly, author and speaker, says sometimes God does give you more than you can handle so He can show Himself strong in and through you. 

In my weakness, He is made strong (2 Corinthians 12:9)

So I’ve figured something out in the midst of all this. God is trying to make me into something special and this child is part of the plan, stamped indelibly into the blueprint of my life.  

This design wasn’t included in the life I had visualized when I looked ahead many years ago.  And there are times even now when I look forward and struggle with an overwhelming sense of fear and uncertainty for my son’s future.  

But this I am sure of, God can be trusted with every detail of life. If I continually lean into Him, He provides everything I need to press on.  

Keeping my focus on Jesus as I learn, in my weakness, to reflect Him to a hurting world, is the ultimate goal. How I reach that goal is often a blend of His grace and my endurance. 

I have come so far from the person I was at the beginning of this journey. I trust somewhere along the way or at least near the end of the road I will finally reach a resemblance of something special in God’s eyes. 

Because in God’s kingdom, being His ‘special child’ is the highest compliment and honor! 

“For I know the plans I have for you,” says the Lord. “They are plansfor good and not for disaster, to give you a future and a hope.”  Jeremiah 29:11 NLT