Tag Archives: Jon

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.


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


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.


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.