Category Archives: Special Life

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!

Independence Day

Like all of us, my son Jonathan, craves independence – freedom.

How do I know this? 

Well, first of all I know my son. I’m with him more than anyone else. But the most convincing evidence is observance of his actions and reactions.

When he wanders off, he’s not running away (like the police who help us find him believe), he’s relishing the idea of going someplace on his own, without being followed or watched.

In a restaurant, he longs to make his own food choices and scowls if suggestions are made. Occasionally he refuses to sit with us and moves to another table. I’m not offended. I understand he wants his own space.

At the store, he chooses items he likes, with no regard for cost and becomes very aggravated when asked to put something back.

He likes to stay up all night so he can have freedom to do whatever he wishes, without someone telling him to shower, shave, take his meds, put on clean clothes and a myriad of other directives that steer him toward a bit of responsibility.

If rushed, he balks, often freezing in place, because he wants the freedom to do it in his time and his way.

Jon has few choices in life. To give my son a small taste of the independence he craves, I have become incredibly adept at appearing to be uninterested in what he’s doing while constantly watching or following from a distance. Sometimes I am called out for this by strangers in public places, who don’t understand. They accuse me of being inattentive.

Maybe they don’t understand that true love recognizes the unspoken needs and desires of another and makes allowances for them.

What Jon doesn’t comprehend is this; freedom is not a license to do what we want whenever we want. It is a privilege that directs responsible living. 

We are not given liberty for selfish means with no thought of the ripple effect our actions have on others. Freedom, lived out properly, sets us and everyone within our sphere of influence, free.

Choice is a wonderful thing but it also has consequences, not just for us but also for those around us. When Jon chooses to not take his meds and is sick, not be ready on time for an appointment, not be safe by wandering away, it affects us in colossal ways. 

His desire for independence does not encompass the enormity of the consequences created for those who love and care for him.

From the very beginning we understand God created man with options and never forces us to do, say or choose the right thing. He watches and follows us from a distance if need be, His heart bursting with love and concern for our well-being. 

We may push Him aside or away, but He is always waiting in the wings for us to choose righteousness, to choose what is best, to choose Him.

And when we wander far away, He recklessly searches for the one lost sheep, gathers it in His arms and brings it back to the safety of the sheepfold.

I’m not certain my son will ever understand how much he needs me, a flawed and often inadequate mother. 

I, however, never want to forget how much I need my perfect, powerful, loving God. My only hope for true freedom lies in knowing Him. 

He gave up everything, laid down His life so I could.

So you could.

Don’t see Him? Don’t feel Him? Turn around and look. 

There He is..watching and waiting from a distance, just like I do with my Jon.

He never takes His eyes (or His love) off of you. 

He is waiting to set you free.

Galatians 5:1 It is for freedom that Christ has set us free. Stand firm,then, and do not let yourselves be burdened again by a yoke of slavery.

2 Corinthians 3:17 Now the Lord is the Spirit,and where the Spirit of the Lord is, there is freedom.

It’s In Jon’s Room!

In the late 1990s a children’s fantasy movie, The Borrowers, was released.   

The story, set in a home in England, features a family of tiny people who secretly live behind the walls and under the floor and ‘borrow’ items from the humans also living there. 

 I’m convinced they are real and live in our house. 

A few days ago, I reached for the broom I keep in the linen closet of the master bath, so I could sweep the floor after I dried my hair.

Gone.

I needed my kitchen scissors to open a bag of almonds.

Missing.

I looked in the drawer for the cheese slicer to serve some cheese and crackers with lunch.

Not there.

Useful items grow legs and disappear around here regularly.

A friend had been missing her reading glasses for several months. 

While she was visiting one day, Jon came out of his room with a pair of glasses on his head. 

She points to Jon and says to me, “Hey, those look familiar, are they yours?”

“No,” I reply, “they’re not mine. I don’t know where they came from.”

Surprise, surprise! They were hers.

I find random items in Jon’s room all the time:  the wooden dowel handle that screws into the toilet bowl plunger, bills that need to be paid,  blank checks from our checkbook, a makeup brush that goes with my blush, the manual for the car from the glove box, Mike’s neckties from our closet and various kitchen utensils, to name just a few.

Recently I invited some mom’s and their kids over for a swim day in our pool. There were keys, sunglasses, phones and open tote bags full of things scattered around everywhere. 

Jon decided to help himself to two pair of kids flip flops that weren’t any bigger than his hand. It’s not like they would fit him and he’s always hated that thingy that goes between the toes. 

Who knows what goes on in that noggin of his? 

During David’s high school graduation, each graduate was encouraged to write a one-line acknowledgement to their parent(s), family or friends which was placed in a PowerPoint presentation and projected on several large screens during part of the ceremony. 

Sweet sentiments scrolled across the screen accompanied by the student’s name who penned them:

“Thanks Mom and Dad for all your support,” 

“I love you Grandma, you’re the best,” 

“Couldn’t have made it through without you, Friend.” 

“God bless you Teacher, for all you did for me.”

The crowd ooo-ed and awww-ed as we watched the quotes marquee across the screen and waited for the one meant for us. 

 Finally David’s popped onto the screen.

“It’s in Jon’s room!” was all it read, in a big, bold font.

As the crowd mumbled in bewilderment all around us, we burst into fits of laughter. 

For all the years David couldn’t find the essay he just wrote, homework and test papers, notebooks, pencils, pens, assignment books and algebra calculators, the answer to the question…

“OK, where is my________?”

…was always, “Go look in Jon’s room.”

The answer to that question has never changed.

If you come for a visit and are missing a few things when you return home, we know the first place to look.

By the way, I found the stick to my broom…guess where…? 

Jon’s room.

And the broom itself… behind the recliner in our bedroom.

Like I said…who knows?

Special Forces Moms

Mother’s Day is set aside to honor the women in our lives who birth us, adopt us, nurture, protect and empower us, for better or worse, richer or poorer, in sickness and health. They do it because they love us. They do it because it’s what moms do.

This Mother’s Day, I want to give a shout out to a specific category of moms; the Navy Seals and Green Berets of mother troops, those who were most likely drafted into a line of duty they didn’t sign up for or expect, those who are in continuous boot camp and on the job training, secretly wondering if they’re qualified to carry out their mission.  Mothers of children born with disabilities and/or critical medical conditions – the “Special Moms”.

No question that a mom loves her special kid, like a mama bear loves her cub, and once that child is permanently entangled in her heart she wouldn’t trade him/her for anything. She may have moments when she wishes her child wasn’t so ill or limited or challenging. She might have days when she prays for less stress, worry and exhaustion. She could have fleeting dreams of packing a bag and running far away, farther than Calgon could ever take her, but she doesn’t, because she knows she has been given a job to do, a unique assignment that could possibly end sooner than her broken heart can imagine or last a lifetime, with no leave of absence in sight.

Once she comprehends the blessing hidden in the uniquely wrapped treasure that is her child, the special mom gains wisdom beyond measure and learns the importance of letting go and clinging to Jesus. She matures with understanding of mysteries others are not privileged to recognize or appreciate.  In this brief pilgrimage through life with her child, she begins to shine like the jewel God created her to be: cut, polished and beautiful.

So here’s some well deserved kudos to all the overtime moms, those who ever have or are dispensing endless care and love for a very unique kid; some, long past the point of when full time mothering should end. You know who are.  You know what you do and so does God. He has sufficient wisdom, grace and endurance when the task is more than you can bear, when you feel overwhelmed and obscure. He promises His strength and grace willbe perfected in both your own and your child’s weakness and frailty. Throughout a lifetime bursting with significant things to be done, every small detail you attend to, every sacrifice and sleepless night matters.

Special Forces Moms everywhere – thanks for the remarkable job you do. I pray you are infused with extra peace, joy, strength and blessed with a few quiet moments to relax, catch your breath and contemplate how important and amazing you really are, to your special needs child of course (whether he discerns it or not), to your family, but most of all to God.

Look up and be aware of God’s delight as you persevere in the unusual assignment you’ve been given. Allow the warmth of His smile to shine into the depths of your weary soul. Soak in His unending love and be revived as the power of Christ rests upon you.

HOOAH! and Happy Mother’s Day! 🙂

1 Corinthians 15:58 Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.

2 Corinthians 12:9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.

Instead of a Mortgage…

While most guys Jon’s age are paying mortgages, car payments, utility bills, giving lunch money to their teenager or buying diapers for their toddler, he is spending his money on very distinctive things.

His forays into the lengthy aisles of the dollar store are fascinating and always leave me with a sense of wonder over what interests him.

Jon’s recent list of purchased items consisted of:
•A pitchfork shaped glow stick – that’s sort of cool actually.

•A greeting card he will not send to anyone – he will write non-readable things on it and carry it around for a while.

•A bundle of girls plastic hair bands – sometimes he wears them but mostly uses them for holding his stuff together, maybe wrapping one around three stuffed animals or last week’s newspaper confiscated from the recycle bin.

•A bag of chips, two Kraft snack packs of bread sticks with cheese dip and an oversized Hershey bar – food is always a good choice. 

•A package of brightly colored Mardi Gras beads – no idea what he does with them. 

•A package of ponytail elastics – uses these to hold things together and also wears them on his wrists or ankles.

•A drinking glass -?? like we don’t already have a cupboard full of those?

•A plastic sword – adding to his array of Karate/Ninja chopping items. 

•Three sets of collectors cards, NBA and baseball – never watches sports so….??

•A spy kit – probably spying on me so he can hide next time he sees me coming with a clean shirt for him to put on.

There were more items that I don’t remember but you get the idea.  The entire accumulation totaled $20. Whatever isn’t edible will end up on the floor in his room, in his shorts pockets or in a grocery bag in the back seat of the car next time we go out.

If Jon lived alone we would definitely be watching him on an episode of the TV reality show, Hoarders, and he would probably be sporting the striped beach towel cape (a towel with holes cut out on each side to put your arms through) that he designed and tried to wear into the dollar store. 

Maybe he should try out for Project Runway instead or the next Batman film.

My Thirty Two Year Old Teenager


Jon tried to leave the house last night at 1 am. I heard the door alarm sound and by the time I got my asleep self out of bed and found my shoes, he was headed around the side of the house with two grocery bags and a back pack full of stuff. Last week he wandered away in the middle of the day while I was in the front yard watering the flowers. I found him in an adjoining neighborhood on the other side of the lake behind our house.

I think I need to be that many eyed critter Ezekiel saw in his vision (Ezekiel 10:12). I used to tell my boys that mothers have eyes in the back of their heads and that go around corners and they believed me, but Jon has proved my theory to be incorrect.

I don’t know where he thought he was going. If asked he doesn’t say. I had plenty to say though. 

Things like: “Where in the world do you think you’re going in the middle of the night.” 

“It’s dark out here, a bear could eat you and we would never see you again.” 

“I was sleeping, you’re supposed to be too.” 

“If you take off in the night the neighbors will call the police and your wandering record at the police department is already so long their computers keep crashing.”

You know- exaggerated things mothers always say and everyone, including Jon, ignores.

I’m living with a thirty two year old bad attitude teenager. Jon has been slow in reaching most of life’s phases. He didn’t walk until he was two and a half, didn’t start saying words until he was four and wasn’t completely out of diapers until he was about eight. I think the adolescent years have finally arrived! He doesn’t like me, won’t talk and won’t come out of his room. What does that sound like to you?

I get the feeling Jon doesn’t want to be here anymore. He is bored with us (can’t blame him there), but more than that he is bored with his life as it is. He is now refusing to go to the day program he was attending. I made and cancelled three appointments to tour the ARC in Deland, another day program with a work component, because he won’t go. I rescheduled a recent doctor appointment for him for the same reason. Tomorrow he has a dentist appointment. Wish me luck with that!

Occasionally I manage to get him out of the house. Usually after offering to take him to the movies, bowling, library, shopping or for lunch, dinner, someplace, anyplace, I get a scowl in return and a closed bedroom door in my face. Lately he only comes out to eat or take off someplace. 

So what’s a mom to do? He’s too old to spank or put in time out. Beg, plead, implore? One percent success rate on that. Restricting privileges? What privileges? Kick him out? He might actually like that but no… can’t do that. Pray? Yes, I do plenty of that. I understand I Thessalonians 5:17, “Pray without ceasing”. It seems to be all I do these days. 

Prayer is my sanity and my medicine. I’ve learned that running to God instead of blaming Him for everything keeps my heart light and my emotions in check. I pray for Jon and for us and for solutions to a problem that looms bigger than a mountain. I’m expecting an answer to come, when or how remains to be seen. But that is what walking in faith is all about.

While I wait, I ask God to give me Ezekiel’s winged creature eyeballs, if not literally, at least by the Holy Spirit to my own spirit so I can keep track of this guy-my wandering, bad attitude, adult, teenager who I love with all my heart.

Wandering

I wrote this in 2005 when we lived in Kissimmee, FL. David is married now and out on his own. Jon is still wandering….

Jonathan wandered off again this evening.  It always happens when we’re busy and focused on something else, a phone call, project or work in the house or outside.  First he’s there and then suddenly he’s gone.  I fail to understand how a person who, most of the time, moves slower than a snail, can disappear so fast.  

We did the customary searching in the usual places and when he didn’t show up, called the police.  The search helicopter eventually spotted him walking around in the eight hundred plus home sub-division, which faces our back property line with a long and tall white vinyl fence that we have annoyingly named ‘The Great Wall of China’.   We are privileged to view this glaring white reminder of growth and development in Central Florida where trees and thick jungle flora once thrived.  Jon must have somehow crossed the drainage ditch, full of water from recent rains that extends between the two properties, to get over there because he was covered with mud.  If only he would dedicate his determination to more useful purposes.

In the middle of all this confusion, one of the three police officers who came to the search party, drove her patrol car off the edge of our driveway into the drainage ditch out by the road.  The back of the car hung up on the driveway’s cement edge and the front hung in the ditch. It took two hours of waiting and a tow truck to remove it.  She didn’t leave until after the sun went down. 

Our neighbors across the street, who graciously help us look for Jon whenever he disappears, says the neighborhood was pretty boring until we moved in. I’m not sure what that means. Maybe we provide cheap entertainment; maybe they secretly wish we’d leave.

David called while all this was going on.  He was up in Orlando with a friend at Vans Skate Park flying and flipping around on his skateboard.   This is a normal activity for a fifteen year old.  Searching for your twenty five year old with a troop of police officers and a helicopter is not usually considered a normal activity.  But for us it has become one.

“What’s going on?” David asks.  Why don’t you guys come up and meet me and we’ll have dinner at this new seafood restaurant that just opened here?” 

“Can’t,” I reply, “Jon’s missing, cops are here looking for him.”

“Again?” David responds with a sigh.  “OK, well call me back when you find him.”

Because we always do find Jon when he goes off on his excursions, this conversation occurs like it’s an everyday event, nonchalantly and without panic. 

Jon comes home in the back of a patrol car and gets out with a Cheshire Cat grin on his face.  Most fun he’d had in a while I think.  We thank the officers for their help and they cheerfully  reassure us, “That’s what we’re here for, just call if it happens again.” 

It’s not a matter of ‘if’ but ‘when’ is what I’m thinking, but don’t say so.

I realize how grateful I am for these public servants, even the one who left huge gouge marks in the side of our driveway and little pieces of broken cement lying in the ditch.  I also realize how grateful I am for my God who always keeps this wandering son safe every time he disappears.  There must be some pretty resourceful angels assigned to him.  And I’m really happy to know that God, who gives us our children, can also be trusted to take good care of them even when we can’t.  

We will continue to call on Him for patience and grace needed to care for this special guy in our lives and will call the police whenever necessary too.

For he will order his angels to protect you wherever you go.They will hold you up with their hands so you won’t even hurt your foot on a stone. Psalm 91:11-12

Inclusion


In 1975 Congress approved a law which gave all disabled children access to free public education and mandated that schools provide individualized instruction in the least restrictive environment possible.

This was a great victory for previous generations of families whose children had been secluded from schools and society because of physical or mental delays and spearheaded, if not total acceptance, at least the tolerance that people with disabilities experience today.

By the time our son, Jonathan entered preschool in 1983, “inclusion” was the buzz word of special education and children with mental delays were being mainstreamed into regular classrooms with the idea that being with their “typical” peers would create positive, normative role models for them.

The pendulum swung from isolation to total access and Jon, who was born in 1980, is part of a generation that was first to grow up in this inclusive environment.

My own pendulum has swung back and forth over the years as we dealt with the positives and negatives of mainstreaming. Now that Jon is an adult, I’m seeing the end results of the concept in real time. I have come to the conclusion that it is not a one size fits all package.

Inclusion worked out fairly well in the elementary years. Jon had some friends at school, but being in a regular classroom didn’t guarantee invites to sleepovers and birthday parties or getting picked for the dodge ball game. The phone or doorbell seldom rang after school or on weekends, with requests for Jon to come out and play.

The nuances of inclusion and being around regular developing peers can give kids like Jon the hope that they will eventually live a “normal” life, like everyone else. That can lead to disappointment and frustration for those who are cognitive enough to know that isn’t happening for them.

Once Jon’s peers reached the age when they began driving, dating, going off to college, joining the military or finally getting married and starting their own families, inclusion became a mute point. Everyone else moved on and Jon remained where they left him.

I recently read a news story about a school in Ohio that is trying what they refer to as “reverse inclusion”, bringing the typical high school-er into the special ed classroom as part of their curriculum, to interact with and assist their disabled peers (http://www.disabilityscoop.com/2013/03/19/in-twist-inclusion/17525/). Some professionals and parents are offended by the idea, saying it is still segregation and makes people with disabilities little else but a project.

I’m not so sure. Maybe bringing others into the world of the disabled, instead of always trying to fit them into ours, is a welcome addition. To truly understand the challenges of the disabled, their reality must be entered rather than viewed from the sidelines. It’s easy to ignore a special needs peer in a regular classroom while you laugh and talk with your other friends, but it is impossible to ignore him when you are on his turf and up to your eyebrows in his challenges.

I’ve discovered what is preached in the school system does not always translate well into the real world of adult life. While schools may create the environment of inclusion, what actually takes place in the community for people with developmental delays costs money and a lot of it. With state budgets shrinking, the services available to give people with disabilities the most “normal” life possible ( which is the ultimate goal of special education inclusion) are limited at best and many of the people who interact with disabled adults, providing respite and companion care, job coaching, supported living or transportation are usually family and paid “friends”.

Should inclusion be stopped? Absolutely not. I believe that Jon’s function level was elevated and he benefited in many ways because of it. But it is not the utopia that some professionals like to hang their PHD’s on, after all inclusion is not just a law, theory or experiment but a matter of the heart.

Maybe a few of these typical kids in Ohio who participate in the world of their special needs peers will later develop a heart for truly “including” adults with disabilities without getting paid to do so. Maybe they will be the ones that reach out to invite a disabled person to their home for dinner, to a movie, for a walk or to church. Maybe they will be the ones who won’t mind dealing with some of the issues that can come with developmental delays in exchange for the joy and friendship that is returned. Just maybe…

Inclusion may now be viewed as the politically correct version of assisting and incorporating the disabled population into everyday life, but based on our experience and in my very humble opinion, anything that bridges the gap is worth a try.