Category Archives: Special Life

We Don’t Qualify

When I am out and about and the subject of Jonathan comes up, many people ask me why he is still living at home at the age of thirty two. The question always asked, “Aren’t there programs and residential places for him?”

“Yes, there is.” I explain, “but they are not free or cheap (and some of them are no good, but that’s another topic). Someone has to pay for it and it’s me and you, the tax payer who does, through the Medicaid system. Since there are about 20,000 people on a wait list for developmental services in the state and Medicaid is struggling, while simultaneously Florida is facing the same economic crisis as the rest of the world, there is not enough money to go around.”

I recently decided that in spite of this gloomy scenario, it can’t hurt to ask and requested the application needed to raise Jon’s funding level so we can have him spend a few nights a month at the Duvall Home (where he attends an adult program a few days a week – when I can get him there!) with a long term goal of slowly adjusting him to move in permanently at some point. There aren’t words to express how good this could possibly be for him and us and also the peace of mind it would give us knowing he is in a safe and secure place, especially as the years continue to fly by.

I received this document shown above which outlines the criteria for increased funding from the Florida Agency For Persons With Disabilities. As you can see there are three crisis categories, that should we fall into any one, has to be heavily documented by all sorts of folks who have a long list of letters behind their names but may be short on the experience of actually living 24/7 with a guy like Jon.

Our situation doesn’t warrant any of these qualifications and quite honestly I’m thankful for that. Jon is not homeless, he is not a danger to anyone and we are still able to care for him. But that doesn’t mean that as an adult, he shouldn’t have the choice to move on, have more to look forward to everyday, more opportunities than we can provide for him and the chance to have the best possible life, something besides hanging out in his room and with his mom most of the time.

If we sold our house and lived under a bridge in our car, while Mike continued to work, we might barely have the resources to place Jon at Duvall full time. Obviously, that is not an option, but I am formulating information and a plan in my mind to move forward with this request. We don’t fit the qualifications listed here, but like I said, it doesn’t hurt to ask. 

My God is a miracle working God so I will bathe it all in prayer, hope for favor from some decision maker in an office up in Tallahassee and see what happens.

Will keep you posted.

Someone is Watching Me

While I was in the bathroom this morning, I realized there were eyes watching me. They were half hidden under a towel draped over the edge of our Jacuzzi tub. I laughed when I spotted them because I knew where they came from and how they landed there.

Pastor Geoff and Bethany, the Children’s Ministry leaders at church,  gave us “Root Deer” for Christmas; a six pack of IBC root beer in glass bottles dressed up as adorable reindeer with red pom pom noses, plastic googly eyes and brown pipe cleaner antlers. As soon as I set eyes on them (pun intended) I commented to Mike, “Of course these would have to be from someone who spends all their time with kids.” I thought they were too cute to drink. Jonathan didn’t. 

Since I rarely buy soda, he was thrilled to discover them in the pantry but refused to drink a bottle until all the add-on parts were removed. I’ve found eyes, noses and antlers everywhere (sorry Bethany), under the Christmas tree, couch cushions, on the floor and patio table, in his room, laundry room and even in the garage. This morning a pair of eyes was in my bathroom, staring at me.

For all the reasons Jon gives me to feel nutty sometimes, he gives me plenty more to smile. As I did my morning routine in the mirror and saw those googly eyes looking at me from the rear view, a verse downloaded into my thoughts from 2 Chronicles 16:9, “For the eyes of the Lord run to and fro throughout the whole earth to show Himself strong on behalf of those whose heart is loyal to Him.”

As a child, I was told God was always watching me, which was usually implied as a negative. He was waiting for me to do something wrong and keeping score; like Santa, making a list and checking it twice, keeping track of who’s naughty and nice. 

Over the years of reading scripture and growing in knowledge and love for God, I’ve come to understand that, like any loving parent, He watches me because I am His child and He cares about my good. Does He see when I mess up? Yes, of course, but God is my Redeemer and His ultimate intention is to show Himself strong on my behalf and bring me back to a place of wholeness, health and stability. His strength plays out in my life in many ways: comfort, peace, love, grace, mercy, safety, instruction, guidance and correction, but always in what is best for me.

I’ve come to realize that life without God’s direction and care is not much of a life at all. As my heart remains loyal to Him, I can rest in the awareness that the Almighty God, Creator of the Universe, has His eyes on me! I don’t know if they are googly eyes or not. I’m just glad He’s always looking out for my good.

Psalm 33:8 But the eyes of the LORD are on those who fear him, on those whose hope is in his unfailing love.

I Peter 3:12 For the eyes of the Lord are on the righteous and his ears are attentive to their prayer.

Honey I Blew Up The Kid

I recently read a news story about a mom from Illinois who drove five hundred miles to Tennessee with her nineteen year old developmentally disabled daughter and left her in a bar-just got in the car and drove away without her. The state is not going to press charges because the state’s attorney said they have no precedent for such action and did not know how to proceed.

The mom reported she had been trying for ten years, with no results, to get help with her daughter, who has the mentality of a three year old and was desperate for an alternative living arrangement for her. I guess some folks resort to extreme measures to make a point. The daughter is now being cared for by the state. Comments from people, following the article, ranged from, this mom is a selfish creep who should be strung up by her toenails to actual empathy for her situation. 

The news flash here is not all people with developmental delays are alike. Some are happy and compliant, some are stubborn and unreasonable and a few are downright aggressive and some swing back and forth at any given time through all of these descriptions. Some can work; others can’t or won’t follow the simplest directive. There is a broad range of cognitive ability, personality and behavior on the disabled scale. Most of the adults who get media coverage are those who function at higher levels of ability and do something that was once thought impossible; get married, live independently, become a violin virtuoso or someone like the boy with Aspersers (a form of autism) I recently heard about, who is going to compete on a popular TV game show because he has an astounding memory for facts and trivia. Many in the population, however, require constant supervision and care, and those who are difficult to manage from day to day create unimaginable stress on caregivers, parents, siblings, marriages and families.

You expect a toddler to act like a toddler and you can also pick them up and move them if they’re up to something mischievous or dangerous. But a nineteen year old who behaves like a three year old, might be taller than you, stronger than you and outweigh you and that creates an entirely new struggle that quickly converts to continuous exhaustion both emotionally and physically, leaving a care giver or parent overwhelmed and sometimes desperate. 

Remember the 1990’s movie, “Honey I Blew Up The Kid” which depicted a stereotypical geeky inventor dad who accidentally turned his two year old into a giant? The over-sizedkid roams the town, inadvertently destroying things and putting him and others in harm’s way; developmentally he is incapable of sound judgement or reason. This movie is a somewhat accurate metaphor of the behavior of some adults with mental delays. Imagine taking care of your two year old forty years from now in adult form and you get the picture. 

In an ideal world, people like this mom, would receive all the support and encouragement her situation warranted. While I certainly don’t condone what she did, after thirty plus years being Jonathan’s mom and main care giver, I can relate to her distress. There are too many days when Jon is so moody, stubborn, ornery, uncooperative and unbelievably slow that the minuscule events of everyday living turn into nonstop skirmishes and ridiculous drama. It is comparable to living with a perpetual adolescent.

There are moments when I wonder how much longer I can hold on, how many more years can we do this? But I love our son unconditionally so I put one foot in front of the other, day after day and plod on. When necessary, I count to twenty, fifty, one hundred, pray a lot, sing, ask God for grace, strength, patience, recite scripture, pray some more, look for the humor and laugh as much as possible. I participate in all forms of morally correct and legal stress relief to keep my wits about me. 

And I write. I tell you the reader, what it’s like in this world so you will understand more, criticize less and possibly be inspired to lend a helping hand or a word of encouragement to a worn out, weary soul.

Many times throughout the four gospels; Matthew, Mark, Luke and John, preface the interaction of Jesus with people as, “He was moved with compassion…”  When Jesus physically left the planet, the responsibility to be His hands, feet and heart in action, to a hurting world was transferred to us. Each of us can make a difference one person and one day at a time by seeing others through eyes of compassion, then inquiring of our own heart what can be done to reach out and give someone a hand or a break. 

That is what Jesus would do and we can do no less. 

Matthew 9:36  But when He [Jesus] saw the multitudes, He was moved with compassion for them, because they were weary and scattered, like sheep having no shepherd.

The Heart of God

What is God’s view of our fallen, messy world? 

I can answer this by telling you about Lisa, a woman with developmental delays who attends Joyful Noise, a local, weekly church service for adults with disabilities. Most of the time  Lisa is happy and smiling. She laughs hard and loud when something strikes her funny and she sings, claps and whoops it up without reservation during the worship portion of the gathering. I can’t help but smile whenever I’m around Lisa.

During prayer time however, she takes on a whole new demeanor. As prayer requests are given for a host of needs, illness, death, injury, family problems and job loss, Lisa cries. She is deeply and genuinely touched by the suffering of others and as each prayer need is vocalized her tears flow harder and faster until someone else in the group is moved to bring her tissues and a comforting pat on the shoulder or back

As I sat a few rows back and observed Lisa this past week, I have to admit my initial thought was a nonchalant, ‘Lisa is crying again.‘

Immediately I had a God thought interrupt the deepest part of my being.

“Lisa is My heart. Look at her and see Me. My heart also breaks as I cry for the suffering of My children and My creation.” 
These questions have been asked over and over throughout generations of humanity; is God interested in the condition of the world? Where is He when devastation, hunger, tragedy and evil overwhelm us? Does He even notice the pain, suffering, loss and evil we see and hear about every day? And if He does, why doesn’t He do something about it? 
He already did. He came as one of us, wrapped in a body of flesh, walked and lived among us, revealed the Father’s loving heart and then willingly died for every sad and sorry condition known to mankind. Jesus revealed this brokenness of heart when he looked out over Jerusalem and lamented. “O Jerusalem, Jerusalem, the one who kills the prophets and stones those who are sent to her! How often I wanted to gather your children together, as a hen gathers her brood under her wings, but you were not willing!’ (Luke 13:34). 
Tragedy and suffering was not in God’s original plan. He created a perfect earth and a perfect human but left the door of free will open, fully understanding the risk that man could slip through that portal of choice and mess it all up. But He did it anyway, even with the knowledge we would break His heart, because He wanted someone to love and someone to love Him back. 
As we move into the Christmas season remember why Jesus came. He has a ‘Lisa’ heart and He cries for and cares about you.
Luke 4:18 (NKJV) “The Spirit of the Lord is upon Me, because He has anointed Me to preach the gospel to the poor; He has sent Me to heal the brokenhearted,a]”>to proclaim liberty to the captives and recovery of sight to the blind, to set at liberty those who are oppressed.

 

Believe

A few days ago, Jonathan and I visited a group home in the area and talked for some time with the remarkable woman who started it for her own son who is developmentally disabled.  Jon was ready to move in. He had brought a bagful of personal items from home and found the only empty bedroom in the house, immediately claiming it by putting his things on the bed and shutting himself inside. 
These homes are costly to operate, about the price of private college tuition per person, per year. Florida, like most of our United States, is broke and budgets are frozen for the Agency for Persons with Disabilities. Jon has had eight cuts to his funding in the last two years and we’ve heard another big one is on the way next year. Presently, not one extra dollar of funding is available unless families are in crisis, which is defined by the state as parents or caregivers who are too sick or too dead to care for their loved one anymore.

The question that haunts every parent of a disabled child-what will happen to Jon when we are no longer here? The state will step in and place him, but we of course, won’t be here to have a say in where he is put.  Not all residential facilities are created equal and some are places you wouldn’t put your dog in, never mind your child. Some families have the means to private pay for long term care but for those of us who don’t; this is a problem that doesn’t go away and one that isn’t discussed at presidential debates or anyplace else. This dilemma sticks to the back of our mind like old gum underneath a table, especially as we and our child age.

So what to do?  We pray and trust that our God who created and gave us this person to love and care for will see to Jon’s every need, while we actively turn over each rock and knock on every hopeful door. It seems that we have hit one dead end after another and these situations severely test our faith. If we truly believe that as God’s people, our provision ultimately comes from Him, then we know He is able to fulfill the purpose and plan He has for Jonathan. God loves him far more than we do and has not forgotten about him or us, though at times my feelings and what I see with my earthly eyes try to convince me otherwise.
 Christ’s disciples once asked Him, “What are the works God requires of us?”Jesus told them that the work God requires is simply this – to believe (John 6:28-29). The practice of walking by faith rather than by what is seen (2 Corinthians 5:7) in front of us at the moment isn’t easy but it ultimately brings us to a place of peace and rest that nothing in this world can offer.
In the Gospel of Mark, chapter nine, a desperate Dad came to Jesus pleading,”Teacher…if You can do anything, have compassion on us and help us.”  
Jesus replied, “If you can believe, all things are possible to him who believes.”
Then the father of the child cried out and said with tears, “Lord, I believe; help my unbelief!”
I identify with this guy. I am him. He is me. He is all of us. But the good news is this; Jesus is greater than my unbelief and He is greater than my problem!  As I wait for the impossible, my faith continues to grow in this difficult place. I’m learning how to wait, trust and believe.
I know from past experience that my faithful God will come through for Jon, for us. It may not happen exactly like I imagine or at the time I think is right but it will happen in His time, in  His way and you will hear me shouting from here when it finally does 🙂
Psalm 37:7 Rest in the Lord, and wait patiently for Him…

Patience


People tell me I’m a very patient person. They think I was born that way because they don’t know what I’ve been through to get here.
I woke Jon up today at 8:30 am with a hope of making it to his program by Noon-ish. At 2 pm he moseyed out of his room and got in the car. So much for that! Since he was already in the car, I decided we were hungry so I brought him to a local sports grill/deli we like, got out of the car and took a seat at a patio table outside the establishment to wait for him to join me. This is what Jon did after I left the car (I actually timed all of this, for something to do):
12 minutes –  Sat inside the car.
3 minutes –  Stayed in the car after he finally opened the door.
8 minutes –  Stood next to the car looking around, staring at the ground, doing ?????, just standing there! He finally closed the door. I locked the door with my remote.
4 minutes – Fooled with door handle. Punched numbers into an “imaginary” keypad on the door, used some gadget from his pocket as a “remote” to pretend he was locking or unlocking the door.
2 minutes – Stood by the car some more.
2 minutes – Stood on the grass median that divides the parking lot from the driving lane.
1 minute – Walked across driving lane to restaurant. Thank goodness no one ran over him!
2 minutes – Stood outside the restaurant door.
I stood up, opened the door and waited for him to go through. He stopped in the doorway so I booted him inside. That was at 3:15 pm and we’re still here. It is now 7:00 pm and all he has eaten is French fries and half a slider.
So here are my options: go stark raving crazy or learn patience? Most of the time I opt for the latter!
Anybody need more patience? Will let you borrow Jon for as long as needed….Anyone? Please??
Philippians 4:11 I have learned [am learning-help me Jesus!] how to be content in any circumstance

Special Gathering


Mike and I attended a leadership conference at a large church in central Florida recently, a district event that happens yearly. It was state of the art- first rate. There’s nothing wrong with that. I love elegance as much as anyone and observed a stunning and modern campus with sleek grounds, perfectly edged grass and lush Florida landscape; a separate school building that rivaled anything the public system has to offer; a coffee shop that many of the ‘relevant’ churches are now sporting, a variety of workshop help sessions throughout the day and Christian vendors lining the hallways promoting books and curriculum for various types of church ministry programs; a contemporary sanctuary with layers of balcony graduating in a graceful flow up the side walls; up-to–date media, technology, sound equipment and lighting; a hip looking worship team spread out across the platform, beautiful voices and amazing harmonies lifted up to God along with a full worship band consisting of keyboards, guitars and drums; and of course, the awesome big name speaker with a soul searching, heart stirring message, that any pastor hopes to have as a guest in their pulpit. I marveled at the excellence of a people doing God’s work in a Florida community, giving their very best to the Lord. It radiated out of every pore of the facility and this event.
As I took all this in, snapshots of another service I attended earlier in the week were darting through my mind.  Joyful Noise* is a gathering for adults who are mentally challenged and other than the format of a service there isn’t much typical about it.  I take Jon there on Tuesday afternoons. It meets at a small church that is neat and clean but certainly not fancy, just like the special people who show up for this gathering.  Most of them, fifteen to twenty, come with caregivers or parents. They attend adult day programs and live in group homes or with parents or a family member.  A few have part time jobs and their own assisted living apartment. They are an eclectic mix of personalities, abilities and behaviors trying to survive in a world that isn’t always sure where they belong, but here, during this time set aside for them and Jesus, they understand that He accepts them just as they are.
Snacks and ‘fellowship’ start the service.  After everyone settles into a seat, prayer requests are taken, some like those we all have and some more unique:  “Pray for my friend at the group home, he is sick.” “My grandmother is having an operation.” “Pray for Junior to be forgiven.” What?! Who’s Junior? Caregivers and parents give each other puzzled glances. We smile, shrug our shoulders, write it down and move on only to find out later that Junior is our last president, George Bush, and the one requesting this is an avid Democrat who thinks Obama is great and Bush needs to repent. I guess that’s not so unusual after all. Just watch CNN or MSNBC for five minutes.
After prayer it’s time to worship and small instruments are handed out- tambourines, maracas, mini drums with one short drum stick. Peter can’t or doesn’t talk, but faithfully carries in his karaoke system, in its original box, each week and has carefully set it up on the top step of the platform, plugging in two microphones. He is in charge of playing the selection of songs on CDs for the singing part of the gathering- worship songs and choruses from a few decades ago.
Jon, who keeps to himself, beelines for the real drum set up on stage. He took lessons for a few years (until his brain reached a place of no more comprendo 🙂 when he was a teenager. He keeps a rather proficient rhythm going while everyone else banging a mini percussion instrument attempts to keep up. 
Once the music starts anyone can come up and ‘’lead’’ the song that is playing. The social ones in the group- Jerry, Neil, Debbie and Hazel are happy to comply, more than once if possible. One or two of them run to the front and grab a microphone. Peter sits on the step next to his sound system making the sign of the cross with his index fingers. Kyle smiles, looks up at the ceiling and rocks back and forth in his chair. Lisa shouts, pumps her arms in the air and laughs.  Leslie lies with his twisted limbs restricted to his stroller like wheel chair, grinning and moaning with the music. Jimmy sits cross legged in the front row, watching and hoping someone will let him play his CD he brought from home. The new guy feels a seizure coming on, stands up and bolts out the door, his caregiver running after him.  The music and singing flow on. We barely sing on key or in unison and no one notices, especially God. We all feel Him in the room, walking and smiling among these people who believe in Him with all their hearts and adore Him with the simplicity of childlike faith. 
Church services are part and parcel of my life. Being raised in the church from a young age and involved in church work and ministry most of my adult life, there is little about the church and its people that surprise me. I love God’s people and all that comes with being a part of them. I love worshipping my Lord in the midst of His saints. But this world of the disabled, where I am surrounded by an often forgotten segment of humanity, feels like another planet compared to the “normal” church services I find myself in. It is a place few experience, a place of total acceptance, openness, and love. There are no professional voices, worship bands, state-of-the-art sound or video and no façade or pretense; just simple people with nothing to hide, who meet to praise a Jesus who loves and accepts them for who they are. His presence is the one place where they are completely loved.
As I stood with a thousand or so people during the evening service of the conference, a video of our Tuesday special gathering replayed again and again in my heart. God was reminding me that the external mechanics of our modern, western Christianity are just side benefits to the real purpose. What He desires are a people who will worship Him in spirit and truth regardless of the bells and whistles. On Tuesdays with Jon and his unique peers, Sundays with a full congregation and all the trimmings or any day all by myself, God is great and worthy to be praised.  As long as my heart always makes Him priority, the externals, while nice, really don’t matter. Any time He dwells among a people whose most fervent desire is to give back to Him all the worship He deserves, that is the most special gathering of all.
*Joyful Noise meets at My Refuge Church on Firehouse Road, Deland, FL from 3:30pm to 5pm every Tuesday. Adults with disabilities, their families and caregivers are invited to attend.

True Face

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.

Food Fight


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!