Tag Archives: disability

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

 
 
 

No Comparison (please!)


A passion of mine is to help people become better educated about adults with developmental disabilities and occasionally, conversations with people evolve into the topic of our developmentally delayed son and some of his behaviors.

 

Some folks, with a little chuckle and smile, say, “O yeah, I know, all kids act that way sometimes. Mine sure does. It can really be frustrating.” 

Or something similar.

 

I know they mean well and I appreciate their desire to empathize, but telling me their three year old child, five year old grandson or ten year old nephew, does the exact same thing doesn’t make me feel better.

Because it’s really not the same – at all!

It hardly seems like a fair comparison when your “child” is thirty plus and you’re still dealing with these behaviors every day.

Their struggle with a childish behavior problem occurs because their kid is still a child.  Jon is not.

Their struggle with these behaviors will end as their child grows and matures. Mine has not.

Any individual who asks about and takes interest in our son, so they can understand him better is greatly appreciated. He’s a remarkable person and we love him very much but comparing him or any other disabled adult to a toddler, elementary age or pre-teen child troubles me.

I don’t begrudge those whose children develop normally and I’m not angry because Jon didn’t. I’m simply in a constant state of living inside this reality.

Families and caregivers, who have put in years of loving and living with an adult with developmental delays are the ones who know…

It’s not the same at all!