Category Archives: Special Life

Confessions of an Imperfect Mom

I yelled at my son last night. EX34C_C_YellingLady

I’m not a screamer, never have been. After growing up in a home of constant yelling, I vowed that I would not be that wife or mom.

But on rare occasions that vow hits an expiration date and this Jesus loving, pastor’s wife, overtime mom – YELLS! Yep, that’s right. Now you know (sorry to disappoint all those who tell me I’m the most patient person in the world).

Jon wanted to ride along to my chiropractor appointment yesterday afternoon. He patiently waited for me in the car and then we headed to one of his favorite hangouts – McD’s and the golden arches.

We ordered and settled in a booth at the back of the dining room. For a long while I preoccupied myself with my laptop, doing some reading and working on some writing, until I started feeling sleepy and decided to check the time.

If you’re a habitual reader of my adventures with Jon, you know that he is an extremely slow (among other things) eater. I’m not talking about regular slow or even irregular slow but the kind of slow that can get you top honors in the Guinness World Book of Records.

I couldn’t believe it, it was midnight! We’d been there for six hours. No wonder my eyes were shutting.

“Jon,” I said, “we need to leave now. We’ve been here too long and I’m falling asleep. I’ll throw away the trash. Please get your things together, and let’s get out of here.”

Unfortunately, Jon wanted to stay. The next twenty minutes consisted of various forms of me insisting and him resisting.

He wouldn’t get up at first. When he finally did, he tried bolting to the front of the building but I blocked him. With a half full cup of caramel latte in one hand and a partially eaten burger in the other, he went out the side door and started down the sidewalk in the opposite direction of where the car was parked.

I went after him and eventually herded him to the car, opened the door and very firmly instructed him to get in.

At this point, I so wanted to be home and Jon was feeling cornered and angry.

He bent over the seat and slammed his caramel latte into the center console cup holder so hard it exploded like a volcano all over the inside of the car. Sticky brown liquid dripped from the dash, down the side of the console onto the floor, ran inside the crevices of the console and splattered all over both front seats.

It was right there that I lost it. I exploded, just like that drink.

I put my hand on Jon’s shoulder, pushed him into the car and slammed the door.

Then he listened to hot lava erupt from my mouth most of the way home.

Today, the emotion of that moment has faded and I’m aware of my inappropriate reaction. I have apologized to him.

Jon doesn’t possess the ability to realize how his actions affect those around him so he won’t apologize in return. He never does. 

Down syndrome limits some of his cognitive ability and autism doesn’t allow him to see past himself and into another’s heart. I know there will be no words or hugs from my son.

But none of that matters. I apologized to him because that is how relationships work, because I love him, and regardless of how frustrating his behaviors can be, because it’s the right thing to do.

God doesn’t ask perfect people to do His work of loving others, only willing hearts are needed. I have learned to quickly forgive and ask for forgiveness (whether it is granted or not) and move on.

Jon may push my buttons once in a while, but more importantly, I know how to push the Mercy reset button every morning, because God’s unending mercies, faithfulness and love are what Jon and I count on to bring us through another day of our unusual life together.

Lamentations 3:22-23 (ESV) “The steadfast love of the Lord never ceases;his mercies never come to an end; they are new every morning; great is your faithfulness.”

 

Jon-a-tized

barber_poleLast week Jon had a guy spa day, sort of. After nearly a month of not wanting to go anywhere, he was treated to a haircut, shave and manicure and came back home looking polished and handsome.

I’ve been taking him to the same barbershop for a while. All the employees there know him and are wonderfully patient with his moods, quirks and slow pace.

The receptionist knows I don’t mind waiting and fits him in around appointments if necessary since it can take up to an hour to get him inside the shop and settled in a chair.

I have to admit to having days when I’m tired of explaining Jon to people so it’s comforting to go back to a place where he’s already understood. Everyone just does their thing until Jon’s ready and no one freaks out because he’s messing up the schedule.

There was a new receptionist behind the counter this visit which caused me to sigh internally as I came through the door. I knew I’d have explaining to do…again.

Jon was still out by the car fooling with the door handle, so she looked at me oddly. This was a barbershop after all.

Me: “Hi. My son, Jon, needs a haircut today.”

Her: “OK,” looking around, “so where is he?”

Me: “He’s out there.” I point to the parking lot.

Her: “Is he coming in?”

Me: “Eventually. He moves pretty slow. He has Down syndrome and autism.”

Her: “Is he OK out there by himself? Should I go get him?”

Me: (Internal sighing and so wanting to do some eye rolling) “He’s fine. I’m watching him from here.”

Her: “How old is he.”

Me: “33”

Her: “Wow. You’ve been doing this a long time then?”

Me: “Yeah.”

Her: “Well, OK let me check. Both barbers have appointments so we won’t be able to fit him in until 12:30.”

Me: “That’s alright. He won’t be ready to sit down until then anyway…maybe.”

Her: “Really? That’s over an hour from now.” She continued staring at the computer screen, fussing over appointments and schedules and how to fit Jon in.

She didn’t get it. As one of my good friends likes to say, she hadn’t been ‘Jon-a-tized’ yet.

Being Jon-a-tized is defined as the state of being educated and familiar with the way Jon does life until you accept him for who he is and how his existence in your life (even for limited time periods) affects you.

Everyone who comes into contact with Jon at any level of interaction is being Jon-a-tized.

He shuffled through the door about fifteen minutes later and headed straight for the bathroom. He was in there for nearly thirty minutes.

I was sitting on a stool underneath a huge flat screen TV, attempting to ignore some sports anchor rambling on endlessly about a football player and reading a book on my Kindle app, when the receptionist walked by with a broom.

“He’s been in there a long time, is he OK?”

I smiled at her. “He’s fine.”

“I guess I see what you mean…about him.” She started sweeping hair into a small pile.

Jon did get a hair cut and shave. We had lunch in the Japanese Steakhouse next door and then went two doors down from there and had his nails clipped and cleaned.

In seven hours we managed to get a receptionist, a restaurant server and a nail technician with very broken English somewhat Jon-a-tized.

All in all, it was a pretty good day.

 

 

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.

Jon’s Organized Disorder

enter-at-your-own-riskJon has a dresser with no clothes in it, a book shelf with very few books on it, storage boxes for his DVDs that are filled with playing cards, string, sticks, old AA batteries (and other unrecognizable items), stuffed animals that are supposed to be in designated crates and a cabinet for his old VHS movies with all the shelves removed.

The shelves are on the floor and his videos are stacked on top of them.

DVDs and videos are piled on the floor like towers, here and there. Stuffed animals lie in wait to attack and the paper paraphernalia he collects is scattered everywhere: old mail, newspapers, ad flyers and catalogs removed from the recycle bin in the garage.

While my motto for home organization is, ‘A place for everything and everything in its place,’ Jon prefers the motto, ‘Everything all over the place.’

His favorite storage area is the floor. Walking through his room is like navigating an obstacle course. One misstep and either you or a teetering pile of…something…can come crashing down.

Even though it’s scary, it is necessary to venture into Jon’s room with the vacuum cleaner.

Since there’s no way to vacuum around his carefully stacked piles, everything has to be picked up. It takes close to an hour to empty the floor of its contents.

The clothes go back in the dresser.

The books go back on the shelf.

The DVDs go back in their storage boxes.

The shelves go back in the cabinet along with the videos.

The mountains of paper are thrown away.

The floor is clean and cleared for proceeding without fear of tripping, attack or injury.

And the room looks wonderfully neat and organized.

Within twenty four hours everything is back on the floor in the exact same place.

I’ve been fighting this silly battle a long time and there’s no winning. Some things just have to be accepted as they are.

So I’ve decided to close Jon’s bedroom door and get on with life.

We’re both so much happier.

 

Jon and the Disappearing Toilet Bowl Brushes

I don’t get Jon’s fascination for toilet bowl brushes but they keep vanishing.

Seems I’m always in the dollar store buying another one.

I have no idea where they go. Other than it’s proper use, what would a person do with a bowl brush?

The most recent one I bought was cradled in a white bowl shaped container. With a wish and a prayer that it might work, I printed a large Sharpie marker message on opposite sides,

“Please do not take! Need this for toilet cleaning.”image

It stayed under Jon’s bathroom sink longer than any previous but a few days ago when I went in there to clean it was missing. After looking around and not finding it, I retrieved a brush from another bathroom to get the job done.

Sunday afternoon Jon came out of his room with bags packed – a small computer bag on wheels and a plastic grocery bag stuffed to bursting.

He went out on the pool deck, parked them in the corner by the screen door and came back in the house, was distracted by something else and forgot they were out there.

So did I, until Monday night.

Mike couldn’t find his iPad and when he went in Jon’s room to look for it, he discovered Jon’s iPad was missing.

Mike came back through the kitchen, his own iPad in hand.

“Do you know where Jon’s iPad is? it’s not in his room. That’s probably why he took mine.”

“No, I have no idea where it would be.”

As I was answering, I immediately remembered the bags left outside, and it was pouring down rain and had been for about ten minutes!

I shot through the kitchen like the house was on fire. “Oh no! I bet it’s outside!

Mike watched me run to the pool deck into the downpour and return with Jon’s dripping wet bags.

We found his iPad and the toilet bowl brush squished along side a bottle of mouthwash, a toothbrush, a shower squeegee, his karate jacket, a roll of scotch tape, a pair of binoculars, the remote to his TV, a few of his favorite DVDs, and several other miscellaneous items.

I don’t know where he thought he was going.

He hadn’t packed a single pair of underwear but where ever it was…at least he was planning on having a clean toilet when he arrived.

 

 

 

Flying With Jon-Why I Don’t

People frequently ask why I don’t bring Jon along when I travel.

image

First of all, I’m not a huge fan of airplanes or anything related to them. The entire process of flight, including airports and all that goes on inside them, irritates me, but that is only one reason why adding my son to the flying equation is not the best plan.

About five years ago I decided to take a summer trip to Maine to visit friends.

These friends are considered family in every way and are ‘adopted’ grandparents to our boys. Jon adores them so I decided to bring him along. It was the first time I’d flown alone with him in a long time.

By some miracle we arrived at the airport in plenty of time to get through security and to our gate. I checked our luggage and had a shoulder bag and a small backpack for myself and a larger one for Jon to carry on. I requested pre-board given Jon’s tendency to freeze up when jostled or rushed in a crowd.

The security line was a disaster. Jon’s methodical slowness held everyone up.

He didn’t want to take his shoes off and his pockets, which I had made certain were empty when leaving the house, were full of the random items he removed from his bag on the way to the airport; sticks, string, cards, small toys, metal objects that set off alarms and a whole pile of whatnots that are important only to him.

The more everyone tried to hurry him the more resistant he became and before long went into his classic, scowling ‘freeze’ mode, which interpreted means, “I’m upset, I’m not moving and you won’t make me.”

We were finally pulled out of line and an attempt was made to pat him down. My warnings to the TSA folks about his aversion to being touched fell on deaf ears.

After a full thirty minutes or more of this frustration, it was finally determined Jon was not a terrorist, just a grumpy dude. He was waned, got his shoes back on, retrieved his precious, miscellaneous trinkets that had been scrutinized like terrorist tools and we were on our way to the gate.

Very slo..o..o..o..w..ly of course.

We stopped at the food court to purchase a meal and drink. There had been no time for breakfast before leaving the house and food would help keep Jon preoccupied during the flight.

Much time had already been used up getting through security so I hurried Jon as best I could, at turtle speed, toward the gate.

I could see the gate on the horizon. We were almost there! Relief flooded through me.

Suddenly Jon dropped his backpack at my feet and shuffled to the right, disappearing into the men’s restroom.

With a sigh and my foot, I slid his backpack to the wall. Saddled with all the carry-ons and a bag full of McDonalds including an oversized, wilting drink cup, I leaned against the wall to wait.

I waited…checked the time and waited…checked the time again and waited.

Twenty minutes had gone by! Then thirty!

I asked several men going in the restroom to check on him for me and “Please tell him to hurry up.”

Each one came back out to report that Jon’s feet were still visible under the locked stall door and my request had been rewarded with silence.

More time passed and I was getting antsy, downright anxious, when I heard the call for our plane to commence boarding.

Oh no!

We were NOT going to miss this plane!

Leaving our bags unattended, I walked to the entrance of the men’s room and yelled,

“Zip it up guys, I’m coming in. Gotta’ get my son outa’ here before we miss our flight!”

I proceeded into the restroom at tornado speed past a wall full of startled males and as I breezed by, keeping my eyes glued to Jon’s feet beneath the handicap stall door, announced,

“Sorry guys, got a husband and two sons, including this one I have to get out of here. Ain’t nothing in here I haven’t seen before.”

I banged on the stall door.

“Jon the plane is boarding. You have to come NOW!”

No answer. His feet moved to the back of the stall.

“Jon we are going to miss this plane if you don’t come out RIGHT NOW.”

My voice was rising in exponential decibels along with my blood pressure.

Silence.

The door remained locked.

Down I went on all fours and crawled underneath, while the few men who hadn’t fled the room, gawked at the spectacle like one would watch a car wreck.

I unlocked the stall door and grabbed Jon by the collar. He flailed and stomped trying to get away from me as I moved to his rear and booted his behind with my knee, then steered him out to where I’d left the carry-on bags.

Remarkably everything was right where I’d left it.

Jon was too upset to help me carry anything and I was too riled up to care. I threw all the bags over my shoulders, grabbed his lunch and drink and herded him like a runaway sheep to the waiting plane.

By the time I got Jon settled into his seat and collapsed into mine, he was madder than a cornered hornet and I was near tears and so drained the only place I wanted to go was home.

Two weeks later, following more crazy Jon scenarios that took place during our visit, the return flight was only slightly less stressful.

I wanted so much for Jon and I to have great time together on that trip but came home exhausted and told Mike I was never traveling alone with Jon again.

And I haven’t.

What was I thinking?

It stands to reason that a guy who takes four hours to eat two slices of pizza might have a hard time adhering to an airline’s schedule.

In matters of sanity, I can’t allow my heart to win out over reason.

As much as I love spending time with my son, I’ve figured out some activities just aren’t worth the extra stress and tension they create.

Traveling is one of them.

 

 

 

 

 

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

 

 

 

Is Hate Speech Free Speech?

You may have heard about the grandmother in Canada who received a disturbing letter from an anonymous neighbor in regard to her grandson.

It was all over the news and internet a few weeks ago.

Max, has autism and spends summers with his grandmother while his mother works. The disgusting words this neighbor wrote about him barely warrant repeating, but the computer typed rant informed grandma that the boy was a nuisance to the neighborhood and he should be euthanized and his non-retarded body parts donated to science!

I read about it with anger and disbelief. Just about the time I think we’re making some headway with some of our human maladies, I’m surprised to discover there are still people like this in the world.

Of course, the disability community went nuts over this, as they should, as we all should.

Websites and Facebook pages began calling for support for this family and there has been a massive outpouring of outrage from all over the globe.

Online petitions demanding justice, for what many call a hate crime, have sprung up with some supporting the arrest and imprisonment of this letter writing neighbor. Others are demanding laws be put in place to stop this type of hate speech.

Canada’s Human Rights Act and Criminal Code passed laws prohibiting ‘hate propaganda’ some time ago but parliament repealed a section of the law this year because of the inability to draw distinct lines between what constitutes hate speech and what is only offensive.

While legislators wrangle over how to define hate speech and turn it into a crime, it is evident that laws against it create a slippery slope that ultimately risks everyone’s freedom of expression.  first-amendment

We who live in freedom loving nations, are still blessed to say whatever we want without fear of imprisonment, which means we sometimes have to put up with people who are rude, cruel or just plain stupid. 

I opt for that over loosing the ability to voice our opinions and beliefs just because they are viewed as offensive or yes, even dangerous.

If you read my previous blogpost, “Tolerating Intolerance,” https://aplacecalledspecial.com/2013/07/02/tolerating-intolerance/  you will already know where I’m going with this.

As much as I believe this neighbor’s letter is despicable, I refuse to sign a petition calling for this person’s arrest. I love my free speech more than the satisfaction of knowing this person’s sorry attitude is sitting in a jail cell.

He/she has the right to say whatever and the responsibility to choose words carefully. Obviously the responsibility part is ignored.

Jesus taught us to, ” Love your enemies, do good to those who hate you, bless those who curse you, pray for those who abuse you” (Luke 6:27-28), and the Apostle Paul, in Ephesians 4:29 admonishes, “Let no corrupt talk come out of your mouths, but only such as is good for building up, as fits the occasion, that it may give grace to those who hear.”

As much as we’d like to, we cannot control what other people think or say but we best be in charge of our own thoughts, words and responses.

We have an obligation to stand up in the face of injustice, but our response as Christ followers should be with wisdom and include prayer, kindness, encouragement and grace – for all. In a situation like this one that is not easy.

Max’s mom must have this figured out. Her reaction to this vicious verbal attack on her son, is, ‘I will not stoop to an insulting level. What I have to say is about tolerance, acceptance and respect for kids with special needs.’

Good for her! She’s taking the high road.

But then she has a child who has probably taught her a lot about that.

So I’d expect nothing less.

 http://www.huffingtonpost.com/2013/08/19/karla-begley-autistic-letter-teen_n_3780378.html

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.