by: diane.connis@gmail.com
 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.
|
by: diane.connis@gmail.com
 I took Jonathan and his younger brother, David, to the mall one day to buy them some needed new clothes. As boys are prone to do, they had either worn out or outgrown everything they owned. We cruised endless clothing racks, the boys tagging along behind me. "What about these?" I kept asking them as I pushed hangers aside. They were obviously bored. Most males are not big fans of shopping unless they're looking at toys (adult males included), but to make sure items fit properly I wanted them to try things on. While I was focused on David and what he needed, Jon wandered off. I turned my back for a few minutes and he was gone. Again. "Where's your brother?" How often has David heard that question through the years? He was only seven or eight years old at the time but had already figured out he was his older brother's keeper. "I don't know." He sighed. I frantically turned in a complete circle hoping to catch a glimpse of Jon's head moving between displays and quickly shoved the pants draped over my arm back on a rack. "Let's go find him, I said, trying to keep my voice calm. "Hurry!" I immediately had visions of Jon wandering outdoors or out into the mall and some creep abducting him. We rushed through the boy's and men's department, calling his name. We checked fitting rooms and bathrooms and I was just beginning to panic when I noticed a crowd gathering over in the women's department. I grabbed David and steered him toward a pointing and laughing group of people. As we came closer I saw him. Jon was standing on a slightly raised circular platform with three female mannequins arrayed in short, tight dresses, the kind I couldn't wear anymore after giving birth to this child who was in a full lip lock with the center plastic lady. My son was kissing a mannequin in the middle of Sears Department Store. There are moments in parenting you'd prefer no one associate you with your child. This was one of those. I pushed my way through the crowd and turned to all the folks watching my kid make out with a mannequin. "Whose child is this?" I asked. They all looked at each other and shrugged. A woman over to my left sheepishly replied, "I don't know." I glared at them in disgust. "Well don't you think the responsible thing to do would be to find his parents. They're probably worried sick about him." Their fun interrupted, the crowd stared at me like they'd all just been sent to time out. "If no one else is willing to find this kid's mom then I will." I turned and marched up on the platform unwrapped Jon's arms from the mannequin, pulled his face off her fake, botoxy lips and yanked him out of that store so fast, no one had time to wonder if I might be abducting him. We sped through the parking lot to the car. "What about my new pants?" David shouted as he ran beside me. So now the pants were important all of a sudden? "Not today." I answered. "But you promised us a pretzel and an Orange Julius," he whined. "Not today." I growled. Years later, when David had been away at college a while, he called one day. We talked about his classes, what he was learning, his dorm adventures and his friends. "Yeah," he said, "I'm just not into the drama that goes on around here sometimes. My friends all think it's amazing that I hardly ever get mad or embarrassed about anything." "So why is that?" I asked him, interested to know myself. "I just tell them, I grew up with Jon."
|
by: diane.connis@gmail.com
 It had been over a month since Jon left the house. He goes through stretches where he just doesn't want to go anywhere even though I offer to take him out three to four days each week. Sunday I came home from church to find him dressed in clean clothes with shoes on. That's the signal for "I want outa' here," so I dropped my plans for a relaxing afternoon and off we went. Jon needed a haircut and since the barbershop where I usually take him is closed Sundays we headed to the salon I frequent in a nearby plaza, which also houses our neighborhood grocery store, a nail salon, a dollar store, a Chinese takeout and a Subway. After his haircut, Jon decided to walk over to the grocery. My son doesn't ask for much. He doesn't care about the latest tech gadget, smart phone, brand name clothes, gas money or car payments. He doesn't pay rent or a mortgage or need expensive guy toys - boats, jet skis, motorcycles or classic cars - so when he occasionally decides to wander in a store for some shopping I really don't mind dropping a few bucks on him. We slowly wandered the aisles for almost two hours making four passes from front to back and end to end until my feet and ankles started screaming, "Enough already!" He wanted to make sure he didn't miss anything. Several times, I had to resist the urge to take things out of the cart and put them back when he wasn't looking. His impromptu grocery list looked something like this: Package of cheese hot dogs Hoagie rolls Bag of York peppermint patties Large Hersey bar An individual piece of white cake from the bakery Jar of Tostitos white cheese dip Bag of cheese and sour cream potato chips Bag of Frito's Package of AAA batteries Package of turkey pepperoni Package of beef jerky Container of shaved Parmesan cheese Large bottle of yellow Gatorade And four peaches Other than the peaches and the Parmesan, I cringed as I paid for his pile of junk food and the batteries we didn't need because we had a drawer full of them at home already. After his groceries were loaded in the car, he headed for the Chinese takeout. And we took it out, right next door to Subway where I ordered a salad. Jon took my drink and chips to accompany his fried rice and chicken chow mien. We stayed there until they kicked us out when the place closed at ten. I've come to the conclusion in matters of food choices Jon is no different than most Americans, so God's gotta’ keep me upright and breathing for a very long time. My son needs me to make him a salad now and then and healthy meals that actually provide him with some much needed nutrients. Just hoping no one lets him do his own grocery shopping all the time, after I leave this planet. If they do he'll be joining me much sooner than expected!
|
by: diane.connis@gmail.com
Apparently Jon wasn't tired after our day out for his haircut, shave, manicure and dinner at Woody's BBQ yesterday.  I left him at the restaurant with his caregiver and went back to pick him up after midweek church service. She said he didn't order until 8:15. Since the place closes at 9, he brought most of his dinner home, but must have decided it wasn't enough. When I got up this morning, it looked like a bomb went off in my kitchen while I was sleeping. All the lights were on. The peanut butter was out of the pantry partnered with a giant messy spatula and blobs of peanut butter goo on every counter surface. The jelly jar was next to the stove, smears and drips everywhere.  Toast had been made and because the butter dish was empty, Jonretrieved a stick from the fridge. It was melted to soup inside the upside down butter dish cover. I don't even want to know how he pulled that off.
He ate all but one piece of an entire angel food cake (reserved for today’s strawberry shortcake) and a brand new can of whip cream was sitting empty on the counter. The residue of whip cream, cake crumbs and several used forks took up residence in one of my baking pans. Sparse leftover reminders of his take home BBQ dinner were piled up at the island counter in front of the bar stool where he must have sat. Dishes, kitchen utensils and silverware were removed from cupboards and drawers.  The kitchen looked like we'd had an army over for Thanksgiving Dinner so the first part of my morning was spent washing dishes, wiping down countertops and sweeping floors.
I took Jon for a physical last week and he's lost a few more pounds. He's a bit too skinny right now so I've been encouraging him to eat up. Maybe this midnight kitchen raid is proof that he does listen when I speak. I'd like to think so. Or maybe he just enjoys feeling independent once in a while, making a few of his own choices without my running commentary in his ears. No annoying Me, yapping at him: "Put the peanut butter away and the spatula in the sink, please." "You got jelly all over the counter. Here, wipe that up." "You can't eat the WHOLE Angel Food cake, Jon." "I just bought that whip cream. Please save some for the shortcake." Oh My Gosh, Jon! You can't soften the butter that way, it looks like soup!" And the zillion other things I'd have to bite my tongue in half to NOT say if I was present. Whatever his reasons were, I hope he had fun without me. I'm sure I had more fun sleeping than watching him create disaster in my kitchen.
|
by: diane.connis@gmail.com
 "Why did the cow cross the road?" I asked. Jon's eyes momentarily glanced into mine, then he shrugged. I knew he wouldn't reply and continued to the punchline. "Because the chicken was on vacation." He grinned slowly at first, and as he thought about it began to chuckle. I love it when we connect, when Jon actually responds to me with something besides annoyance and frustration. I'm thrilled when my son emerges from his own world, interested in interacting. It happens so rarely that I try to drop whatever I'm doing and soak up the joy of the moment. Our communication would seem juvenile and insignificant to an outsider, Jon singing me a Disney song or repeating a phrase from a movie, but I know it's huge. Today, when he began to lose interest and turned to walk away, I tried to hang on to it a little longer. I started reading him jokes from a website. "Why do fish live in salt water? Because pepper water makes them sneeze." Got a smile from that one and also this one, "Where do sheep go on vacation? To the Baaaaahaaaaamaaas!" Then, "What do you a call a pig who knows Karate? A Pork Chop." Jon thought on that one for a few seconds and shook his head. He expelled a long hiss, sounding like, "Ghhhheee," and said to himself, "that's not funny," frowned, then turned away. Just like that. One joke, determined to be dumb, and it was all over. I tried reading more as he walked away but the connection was gone, just like a computer system that had suddenly shut down. For fifteen minutes, my son wanted to "talk" to me today. It might not seem like much, actually it's never enough. But it was the best fifteen minutes of my day.
|
by: diane.connis@gmail.com
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 16 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.
|
by: diane.connis@gmail.com
 Have 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."
|
by: diane.connis@gmail.com
 Scientists 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.
|
by: diane.connis@gmail.com
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!
|
by: diane.connis@gmail.com
I wrote this in the Fall of 2007 after our son, David, packed up and left for college. For all parents soon facing graduation and a child leaving home, this one's for you. Six years later, I guess I can say, you sort of get used to them being gone, but you never stop missing them if they don't return close to home. There is an empty place in our home today and also in my heart. David packed up his belongings and we took him six hundred and forty miles away from us to begin a new life at college.
After years of loving, holding, comforting, teaching, playing, training, giving, worrying and caring we took our child, who is one no longer, to a strange place full of strange people then drove away and left him there, watching him wave good-bye in the rear view mirror as we pointed our car towards home.
It is a very hard thing to do, this letting go, so bitter-sweet. But the bird has left the nest and the butterfly has emerged from the chrysalis. Time can not be reversed but can only go forward from here.
How am I supposed to feel? I'm really not sure. I am so conflicted with happiness for David and this new opportunity for growth and adventure, then sadness for how much I already miss him.
We drive home immersed in empty silence in a car that just a few hours ago was packed full of our son. I walk into my house and his bedroom door is closed, the room dark and quiet. No clothes piled on the floor, no rumpled blankets on the bed, no email and cell phone competing for attention, no music blaring from the stereo speakers or from one of the several guitars that once lined the walls, no crazy auburn curls emerging from all that chaos with a random joke, smile or hug.
It is eerily silent here and I feel immensely sad and lonely for this one who has brought so much joy to my days. There are others here in my home that I love just as much but they can not take his place. Not the easy, happy place that he always resides in. They can not fill the vacant space that his leaving has made inside of me because they each have a different spot in my heart.
If I truly believe that everything I have comes from God then I understand that this son was only loaned to us for a time. God entrusts us with a child and we are allowed to call him or her our own. We are expected to be good stewards of this life and assist God in making something useful of it.
So the formation begins with a parent’s persistent love and training, shaping and influencing through the years, spinning by as swiftly as the potter's wheel. We give our imperfect best to mold goodness, character, and purpose until the time when we finally take our hands off, when we must let go and see what becomes of this life we were once immersed in.
The clay is formed now and our child is responsible to make wise choices and become all that God has purposed for him. My job is finished. My eyes are no longer close by to see, nor my words instantly available to warn him of the trouble one poor decision can produce. My ears are no longer attentively tuned to the lure of the world that surrounds him. My hands are no longer the main influence shaping him. Now, in his own heart and mind, he must see, hear and understand the decisions that create an ongoing success of a life fit for The Potter’s use.
I pray we did something right in teaching him what he needs to know. I think we did, but only time will tell the end of the story. I can only hope that all of the treasure tucked away in this wonderful earthen vessel of our son will display the excellency of the power of God, and not so much of us and our human limitations and frailty.
As time marches forward and the story continues to be written, I trust that the wonder of seeing David’s life and purpose unfold will fill my very being with a greater joy, replacing all the emptiness my heart feels today. And even in this conflicting sadness, I thank God for the privilege of being His willing and humble assistant through these fleeting years.
I wouldn’t trade one moment of it for anything at all.
“But now, O Lord, you are our Father; we are the clay, and you our potter; and we all are the work of your hand.” Isaiah 64:8
“But we have this treasure in earthen vessels that the excellency of the power may be of God, and not of us.” 2Corinthians 4:7
|
by: diane.connis@gmail.com
A parent of a young child asked us, “What is the secret to raising kids who don’t stray from God and doing right, even through the teen years and into adulthood?”
The answer wasn’t one we had completely formulated in our minds, because it was a question we had ever been asked. I had to ponder on it. Though we had successfully raised two boys, we certainly knew it wasn’t because we were flawless, perfect parents!
I discovered a large part of the answer in a very sad statement buried in a context that describes the end of Joshua’s life, one of Israel’s great leaders, from Judges 2:10. When all the elderly men that out lived Joshua, those who had witnessed the things God had done for Israel, died “a new generation grew up that had not personally experienced the Lord’s presence or seen what he had done for Israel.” This new generation was enjoying the good life in the Promise Land that their predecessors had fought, struggled and died to obtain, but they had no personal experience with God to understand the promise or value of it. Consequently they turned from Him and began to worship the false gods of the nations around them.
We can believe what we believe, tell our kids what they should believe and try to make them believe it, but until they have a personal experience with God, unless they experience His presence in a way that is life changing, God will be our thing, not theirs. One of the most important things we can do, from the time our children arrive, is to pray they will experience God for themselves in a very tangible way, then create an atmosphere in our family life that equips them with an awareness of who He is and how unconditionally He loves them.
When a child reaches an age where he begins to question everything he has been taught, parents tend to panic and label it as rebellion, but often, the child is only becoming aware of himself and testing his place in the world. In this formative stage of developing his own identity, a child may have doubts about the reality of God. He may need to further examine the teachings he has heard growing up in a home and church where God’s word is believed and (hopefully) lived.
I remember telling our son, David, when he was around twelve years old, he shouldn’t believe anything just because we, the pastor or youth leader said it. He needed to pray, read and search it out for himself so that it would become real to him. I showed him where God said, “If you seek me you will find me” (Jeremiah 29:13). Our kids need to know that God will reveal Himself to anyone who sincerely asks. They also need to understand that they are personally accountable for what they do with Jesus and the truth He gives. Living off mom and dad’s faith just doesn’t cut it and won’t keep them for the long haul.
It’s risky and uncomfortable business giving a child the freedom, within the boundaries of your watchful eye of course, to discover God for himself. We can’t take it as an affront when they question the things that have been drilled into them since their first breath. Children grow into adults with free will and choice. They don’t always choose well or right, there’s no guarantee in that, but if they have mighty encounters with the God who created and loves them, they are less likely to go astray, less apt to be pulled away by the enticements of the world and if they do stray, are more likely to return.
David, wrote this song about the exodus of his generation from following Christ:
Perfect Ghosts Which came first, empty hearts or empty pews
Which is worse when a thousand options mean a thousand truths
A tepid verse, your parents god with weekly dues
It don't work, soap box faith with shadowed shoes I've seen the ghosts of our fathers in the walls
It grows, it grows our fear of these dark halls
We groan, we groan for something to feel like home
Because in the end perfect ghosts can't love at all I'd rather shake the hand of a joker then hand of a king
Most royalty are wolves feeding on sheep's mistakes
It don't relate, wide smiles with rules to break
When everything's fake why wouldn't we walk away I've seen the ghosts of our fathers in the walls
It grows, it grows our fear of these dark halls
We groan, we groan for something to feel like home
Because in the end perfect ghosts can't love at all Its about to change, I'll kiss my demons on the open floor
When it comes to faith your either in or a prisoner of war No one can experience Jesus for us, so in our own lives, make it personal, keep it real and pray, pray, pray that our kids encounter God so genuinely, they do the same. A child who loves and serves the Lord with all his heart, for all of his life is the greatest blessing a parent could hope for.
John 4:41-42 And many more believed because of his [Jesus'] word. They said to the woman, “It is no longer because of what you said that we believe, for we have heard for ourselves, and we know that this is indeed the Savior of the world.” Judges 2: 7 The people worshiped the Lordthroughout Joshua’s lifetime and as long as the elderly men who outlived him remained alive. These men had witnessed all the great things the Lord had done for Israel. 8 Joshua son of Nun, the Lord’s servant, died at the age of one hundred ten. 9 The people buried him in his allotted land in Timnath Heres in the hill country of Ephraim, north of Mount Gaash. 10 That entire generation passed away; a new generation grew up that had not personally experienced the Lord’s presence or seen what he had done for Israel 11 The Israelites did evil before the Lord by worshiping the Baals. 12 They abandoned the Lord God of their ancestors who brought them out of the land of Egypt. They followed other gods—the gods of the nations who lived around them. They worshiped them and made the Lord angry. 13 They abandoned the Lord and worshiped Baal and the Ashtoreths.
|
by: diane.connis@gmail.com
We need to leave the house by 10:20 am to arrive at Jonathan’s day program by 11 am. On this particular day, two and a half hours prior to our departure time, I gave him the shaver I keep in my bathroom (it’s never charged if he’s responsible for it) and asked him to please remove several days of stubble from his face, change his clothes and put shoes on. At 10:40 am he was standing in the garage with his clean shirt in hand instead of on his person and shoes and socks on the floor instead of on his feet, writing on an empty cardboard box. Despite frequent reminders from me, he was still moving at his usual snail pace. I rushed through the garage on the way to the car. “We need to leave-now! We’re already very late, Jon. You can finish getting dressed in the car on the way.” He frowned then plodded to the car in his bare feet, tossed the shirt, shoes and socks on the floor. We were going to be late and once again I was flustered and frustrated. During the first few miles, I attempted to calm myself by repeatedly mumbling, “I can do all things through Christ who gives me strength,” mingled with random directives to Jon to change his shirt and put on his shoes. When we stopped for a traffic light, I glanced at him and realized he had shaved. Awesomeness! He got one out of three right and in the craziness that usually surrounds getting him out the door that was a small victory, one that was important to acknowledge. “Good job shaving dude, now you need to finish getting dressed, pl-l-l-e-e-e-ase” I emphasized the word ‘please’ attempting to pressure him with a bit of urgency. The effects of reciting Philippians 4: 13 and the worship music coming from the radio station, was calming. I felt peace returning to my mind and emotions. We finally arrived at our destination with Jon fully dressed and decent for public viewing, at least I thought so. I parked the car and Jon began to gather his things. Since I needed to walk him around the side of the building to the front door, I got out and waited in a patch of shade at the corner. He finally removed himself from the car, shut the door and ambled toward me. As he came closer, I realized his face looked odd, as if one side was dirty. Not until he was directly in front of me, did I see that he had shaved only the left side of his face, the side visible to me while driving. The program director came around the corner of the building just as I exclaimed, “Oh my gosh Jon, you only shaved half your face?! Now you’re going to look like that all day!” The director looked from me to Jon and chuckled, unfazed. It’s certain that nothing surprises him after years of working with the developmentally disabled population. “Come on Jon,” he said, “You made it in time for lunch today, we’re having tacos. You like tacos?’’ He directed Jon toward the door and waved me away, a gesture that meant, ‘It’s fine Mom, you can leave now’. ”He’s all yours, “I waved back at him, “half hairy face and all.” As I left the parking lot, I thought about my partially shaved son, so random and such a mystery to me at times. But most of the people he was spending the afternoon with probably wouldn’t notice his partially shaved face and it obviously didn’t matter to him. He puts little importance on other people’s acceptance or expectations of him. There is no ability for pretense or façade in him. With Jon, what you see is exactly what you get. By the time I was a few miles down the road I realized that some of Jon’s behaviors that are most annoying at their occurrence, often become teachable moments for my heart. This was another of those. During our drive I only saw the smooth side of Jon’s face and assumed he had completely shaved. Even though he wasn’t trying to hide that from me, my perception was still wrong. So I began to wonder--what perceptions do I have of others and portray to others? Which side of my face do I allow to be seen? Am I true faced or fake, hiding behind a mask of insincerity? Do I immediately construct critical judgments of others based on appearance and behavior that is outwardly visible without having all the facts or an understanding of their experiences and history? We are experts at showing the side of ourselves we want others to see. Jesus zeroed in on this flaw of human nature and addressed it at length in Matthew 23. He was especially bothered by those who were skilled at going through the outward motions of religious regulation and tradition, putting on superficial displays that did not match the content of the heart. In verse 27 and 28, he tells the religious leaders, “Woe to you, scribes and Pharisees, hypocrites! For you are like whitewashed tombs which indeed appear beautiful outwardly, but inside are full of dead men’s bones and all uncleanness. Even so you also outwardly appear righteous to men, but inside you are full of hypocrisy and lawlessness.’’ We might be able to fool people but we can’t hide anything from God. Man has tried since that day in the garden when God asked Adam the question, “Where are you?” It was Adam who needed to know who he had become, not God. God is not looking for perfect people but those who come to Him in humility and truth. Truth includes the ability to be honest before Him, not because He needs to know what is in us, but because we do. Being honest and open with Him about our condition sets us free to be real with others and accepting of them as well. I picked Jon up a few hours later. We went to the library and stopped at Wendy’s for dinner. Everywhere we went people stared at his face. When it was time to leave the restaurant Jon packed up his leftover food and headed for the door but as soon as he reached it, quickly turned left and made a detour down the hallway to the men’s room. It had been a long day and I was more than ready to go home. I sighed and flopped down in the booth closest to the restrooms and opened the book I had brought along to read while I waited for him to return. Ten minutes later Jon came up from behind and stood completely still beside me. He slowly reached into his pocket, pulled out the shaver and handed it to me. Puzzled, I looked up at him and saw that his face was completely shaven! “Lord have mercy, Jon.” I took the shaver from him, “You went through this entire day with half a hairy face and you had this in your pocket the whole time? ” He smiled at me and his eyes sparkled with a hint of mischief. I shoved the shaver in my book bag and smiled back. “Come on True Face, let’s go home” He gave me a perplexed look, turned to the door and headed out to the car. I followed behind, shaking my head in amazement at the puzzle that is my son, and how often he and God gang up on me to teach my heart the important stuff of life I need to know.
|
by: diane.connis@gmail.com
Jonathan attends an adult day program on Tuesdays and Thursdays. Since it is a forty minute drive and I’m the main source of transportation, those are the only days I can devote to getting him there, for now. After I pick him up at 3 pm, we usually make a night of it since we’re already out. I take him to the library to load up on free DVDs, to the movies, or bowling, to the Dollar Store or Wal-Mart to snoop around or anything else he might want to do. Often we go eat dinner someplace. You must understand that going out with Jon requires clearing your schedule for the entire day, until midnight, and psyching yourself up for truck loads of patience. He is snail slow…no, make that snails-in-reverse slow. The Pony Express moving mail across country in the beginning of our nation’s history went faster in two weeks than Jon does in an hour. (The only time he is fast is when he wanders off. In seconds, he can vanish into thin air-but that’s another topic). Yesterday I retrieved Jon from the program at 3 pm, when it ends, and took him to a scheduled doctor appointment (annual checkup) at 3:40. When we got back in the car I asked him where he wanted to go. He ripped out a coupon from a booklet he found in the car, for a local buffet, and handed it to me. The restaurant was just up the road so we headed there. It was 5 pm. Jon loves buffet! Who doesn’t? The vision of counter after counter of delicacies displayed for the taking makes most folks I know salivate with happiness. For the price of two Starbucks' lattes or less you can eat yourself to death. For Jon, part of the fun is about having choices. So many choices are made for him, but here he is king of his universe! He shuffles slowly around the food tables looking intently at each item and can waste forty five minutes filling up his first round. On the door, I noticed the closing hour of 8 pm as we were entering the restaurant and realized instantly this could be trouble. Three hours is not long enough for Jon to do buffet. It takes him longer than that to go back for seconds. It was too late to reverse the decision. Jon was already heading for the clean stack of plates. Deal with him melting down now or possibly later? Hmmm? Quick decision made-I opted for later. I finished eating in forty minutes, returning once to refill my plate. The entire time Jon was still wandering up and down the aisles between the food counters trying to decide what he wanted. He spent another fifteen minutes at the help yourself drink counter and finally sauntered back to our booth with a plate in each hand piled high in the middle and all the way to the edges with chow; then went back to retrieve the drink he had poured. It was 6:15. I decided it might be prudent to warn Jon ahead of time about the early closing hour, although I had a feeling that wouldn’t matter. Every half hour or so I mentioned it. “You better eat faster Jon, they close early here,” or “You better go back up and get more food now if you want it because they close at eight.” Every time I brought it up he scowled at me. Not a good sign. At 7:50 pm, Jon was still up to his eyeballs in two full plates. He had gone back to refill one of his plates and hadn’t made it to the dessert counter yet. I walked across the room to the young man who had been collecting plates and cleaning tables all evening, and asked him for a to-go box. “We don’t do to-go boxes here, “he replied. “Yes, I know. Most buffets don’t,” I shot him a look of desperation, “but there’s no way you’re going to get that food away from him and he won’t leave without it.” I pointed at Jon across the room. The young man thought for a few seconds, “Let me go ask the manager if it’s ok, given the circumstance.” He returned a few minutes later with an empty styrofoam container and I thanked him profusely. When Jon spotted me heading back to the booth with the container, he grabbed his plate and hid it on his lap under the table. Oh boy, this isn’t going to go well. I tried everything I knew to get him to put his food in that box. No way. He wanted to stay there and eat it all and all attempts to get it away from him was going to end with it upside down on the floor, if I wasn’t careful. I saw the kitchen employees clearing the food counters and washing them down. Then the lights started going out until I heard one of the employees shout, “Hey, we still got customers over there in the corner!”” It was 8:15. I won’t bore you with more details of removing Jon and his dinner from the closed restaurant. Let me just say that there were six restaurant workers including the manager and of course me pleading, begging, bribing and cajoling. What did the trick was this mother finally getting annoyed enough to climb over the back of the booth bench, plunking down next to Jon and shoving his one hundred and forty pound body out of the seat with my derriere! It was 8:30 pm. Years ago one of Jon’s funny little sayings (that he picked up from a movie I think) was, “Sometimes it’s good to have a big butt.” Last night he wasn’t thinking it was so good that Mom has a big one. May I politely ask this of you? If you ever come upon a parent or caregiver trying to deal with an obstinate developmentally disabled person don’t be quick to judge what you see, especially if you just happened upon the scene and weren’t there to view the whole incident. We love our kids and don’t abuse them, but there are times when different measures are required to break through that wall of stubbornness and resistance they can challenge us with. Most of us are just trying to do what’s best for them while maintaining our own sanity. Sometimes that’s a tough scale to balance. A new Jon rule to add to my list; next time we go to a buffet, check what time they close BEFORE we get out of the car!
|