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.

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.