One Day at a Time

Mark has wanted to live away from us and to have his “own place” for many years before he was finally able.  The transition has not been easy for any of us but I think I have the hardest time of all with him being away from home.  There’s not a day I don’t miss him or worry about him and I doubt that will ever change.  I was anxious for him to move into supported living almost as much as he was and looked forward to having some badly needed time to myself.  After a little more than a year now, Mark is finally beginning to adjust to his new life.  Although its been a slow process, he is coming around slowly and has made huge progress in many ways.   I think of him daily and worry that he is not happy but at the same time I enjoy freedom I’ve never had before.  It is so nice to do things on my own time and schedule.  Things others my age take for granted is a luxury or a treat for me.  Its sorta like being on vacation every day.

One of the things I’ve noticed lately is when he  needs help with something, he will ask for it instead of expecting me take care of it;  something he would never do before.   An example is setting his wristwatch to the time change this past weekend.  Last night when he called, I asked him if his watch was set to the new time.  He said he asked “Jean” to fix it. Jean is somebody at Kroger where he works. He would never have asked anybody at work to do that before.  I was so proud of him when he told me because it shows how  independent he is getting from me and that he will ask for help when he needs it.

I am grateful and happy for a chance to have a somewhat normal life,  but I am sad and angry at the same time.  Angry and sad that Mark has such a hard time where everything is such a struggle for him.  He could have kept living at home with us for the rest of our lives but I know that was not best for him nor the rest of the family.   I know as hard as it is for him now,  he is learning how to live without me and hopefully he will be happy and will have as independent a life as possible.

 

Journal Entry- 2008

Taylor, my granddaughter, grew up around Mark spending days in the summer and school breaks with us  and was 14 years old at the time she wrote this.  She had always enjoyed writing and keeping a journal for herself and she also did some journaling on Mark.  This is one she had written when Mark was about 37 years old, 10 years ago.   I’m so glad she did this and that I kept them all!

This one gives you  a little insight into  what a typical day back then  was like for Mark.  He had the same job at Kroger then as he does today.  At this time, he worked 4 hours a day,  5 days a week.  Mark has always done better with a lot of  structure and a daily routine,  whereas anyone else might have difficulty understanding how we can live a  life with so much sameness but we have gotten so used to it and it has become second nature to us. We simply learned  in order to live our lives with the least amount of stress as possible, we just fell into it a day at a time from when Mark was a small child.
January 1, 2008
8:30 p.m.
Mark’s routine is pretty much the same every day. Today he got up at
10:30, about thirty minutes later than usual.
After he gets out of bed, he goes to the refrigerator for his Kool-Aid. Each
day, he mixes a pitcher of unsweetened Kool-Aid and drinks two glasses. He
drinks Kool-Aid throughout the day. He skips breakfast today because of
sleeping late. He gets dressed and goes outside to chew on a cigar for a little
while before coming in to lie on his bed to watch TV.
He has lunch around noon. Today he has a grilled cheese sandwich and
some chicken and stars soup. After lunch, he watches TV. He keeps his TV on
the PBS channel when he’s not watching DVDs or VHS tapes.
He gets dressed for work at one o’clock. Granny usually shaves him. He
uses an electric razor when he shaves himself, but he doesn’t do a good job,
probably because he won’t look at himself in the mirror.
Mark works from 2 p.m. to 6 p.m. Granny takes him to work and
Granddaddy picks him up. Granddaddy goes inside to get him, since Mark is
not allowed to go outside the store by himself. They get home and have supper.
After eating, Granddaddy and Mark take a drive. In the winter, when it’s
dark outside, they will usually drive to downtown and back. In the summertime,
when it’s still daylight, they will drive out in the country. Mark likes to ride in the
truck and listen to CDs or the radio.

When they get home, he will sit on the porch, or stand in the yard with his
coffee, while he chews on his cigar. When he comes in the house, around 8
o’clock, he goes to the shower. After a very long shower, before he gets
comfortable on the couch, he gets his usual night-time snacks.
First, he gets a package of peanut butter crackers and a glass of water.
He brings it into the living room where we are watching television. When he
finishes, he gets up and goes to his room to look at old pictures of friends and
family he keeps on his chest in an old box. He looks at these pictures for about
fifteen minutes. Then he goes back into the kitchen for two tablespoons of
peanut butter and a glass of milk. He goes back to look at his pictures for a little
while longer. Then, he gets a banana, and comes into the living room to watch
TV with us, again.
He likes to go to bed at 10:00, but will not go to bed until everybody else does. So,
usually, everyone goes to bed at 10:00.  Who knows when, or how much, he
sleeps during the night.
At five o’clock in the morning, he gets up and goes into the living room to
wait for Granddaddy to get up. When he hears him, he quickly goes back to his
bed.
No wonder he sleeps late….

One Year Anniversary

Recently Mark reached the one year anniversary milestone of living away from home! As a family, we have been delighted by his progress and marvel at the differences that can happen in a year. During our nightly phone calls, Mark tells me about his daily activities and I often reflect on the major strides he has made within the last year in the midst of a major life change! It has been a difficult year for all of us.  His leaving home is something that had to happen soon because of our ages, and his father and I  wanted to be able to choose where and how it happened.  Mark has grown so much this year and it has been a good year for him and  I am so proud of how he has been able to handle it all.

One of the most positive changes Mark has encountered at his new home is the difference in his daily routine. While living at home, Mark had a fixed routine; he would sleep until late morning and return to his room after eating breakfast, where he would get dressed.  His daily activities depended mostly on mine.  He went with me everywhere I went. Some days, I didn’t go out and some days when I did, it was only to give him something to do.  On days we stayed home, he would spend most of the day in his room lying on his bed watching TV.   He likes music and kept a radio on the porch where he would go out about the same time of afternoon and turn it on and listen for a while.  We have a lot of trees where we live and he liked to walk around in the yard.  In the fall when the leaves covered the ground he used to enjoy kicking them around and then he was back in his room lying down again.   It’s quite a contrast now at his new home where he begins his day around 6:30 or 7:00am before starting his daily activities, which are different each day.  He is in a community based program in supported living which means he spends 6 hours a day out and about in the community doing different things.  He still works at Kroger 2 days a week; the other 3 days he spends 6 hours in the community. The weekends are for sleeping in.

Among the different daily activities, Mark goes bowling each week and accompanies his roommates to their swim meet practice one evening in the week. Since Mark doesn’t swim and has no interest in learning, he enjoys watching them from the sidelines Sometimes, after dinner, they go to the homeless shelter and serve the evening meal..He also attends dances occasionally always hoping to find a new girlfriend.  He has a really difficult time finding and keeping a girlfriend and it really bothers him.   He never stops trying though.

After a year, he seems to finally have accepted his new life but he has had a hard time adjusting. He gets homesick but he has learned to control his anxiety over wanting to come home.  He generally comes home every other weekend and after he goes back on Sunday, he counts the days until his next visit home.  I print him a monthly calendar he hangs on his closet door where he checks off the days until his next home visit.   He has just now gotten to where he doesn’t mind going back at the end of the weekend.  There’s always something to look forward to.. Tomorrow they are going on a trip to the Knoxville zoo and of course I worry….

It’s only a Toe Nail

TAYLOR’S JOURNAL
October 06, 2007

9:41 a.m.

Mark gets out of bed and begins his morning routine. He heads for the kitchen to make his unsweetened Kool-Aid. He mixes a pack first thing every morning. He giggles and looks around the kitchen, as he stirs his Kool-Aid excitedly. His mom, who is my granny, is making a pie.

“Mark, put your pajamas in the washer. I’m about to do a load of clothes.” Granny says.

Instead of answering her, he nods and makes his way to the bathroom to get dressed. Moments later, he reappears. He notices me, smiles, and happily tells me hello. Instead of actually saying hello, he squeezes my shoulder. Shoulder squeezing is Mark’s trademark. It’s a sweet (although sometimes painful) indication that he is fond of you. He then finishes getting dressed by putting on his socks and shoes ,so he can go outside to chew on a cigar before “The Meeting”.

“The Meeting” is what we call our scheduled sessions where we talk about what is on Mark’s mind. It varies as to how often we have them, but lately it’s been about once a month, or so. This is something we started about five years ago after Mark has become so anxious about not being able to live on his own. Sometimes, these meetings go smoothly, sometimes they do not. Mark has talked about moving out for a long time and is worried he will never get to.   He wants us to help him “get funding” for him and this is the main topic in our meetings. He is on the state’s waiting list for residential services and he is about to give up ever getting funding so we do everything we can to encourage him and try to help him from getting more depressed about it and keep his hopes up.

In our meetings , we attempt to go deeper into the mind of my uncle, Mark Fuller.

Taylor is my granddaughter and spent a lot of time with us during the years Mark was younger and she kept a journal of Mark for several years . She was about 12 years old then.

Ten years later,

It has been a year since Mark got his wish of moving out on his own and this afternoon we took him back after being home for the weekend.  It was a nice, uneventful, ordinary weekend.  I buzzed his hair, shaved him and trimmed his nails, something I do on each of his visits before he goes back.  He is only 20 minutes away but I miss him most when we get back home after his weekend visits but seeing this toe clipping just now on the carpet made me feel even more sad.  I know its only a toenail…

toenail

P.S. He made a pitcher of Kool-Aid today.

You’ve come a long way baby!

4th

It’s been a year this month since Mark moved into supported living.  It’s unreal it has been this long .  I remember when a year was an eternity.  I only wish I had kept a journal from that time until now.  I cannot say whether he is happy in his new home but his progress is remarkable to me.  There are times it seems like he is and other times,  he is his discontented old self,  wishing for a new life , wanting to be little again.  He calls it “being born again”.  He talked about it this past weekend, how he still wants to “be born again”,  meaning he wants to start from the beginning when he was a baby.

At his new home, they pretty much have a set routine every week.  He does community outings  every weekday with the exception of the 2 days he works at his job at Kroger.  He is on a bowling league where they go every Tuesday after dinner.  There is swimming practice on Mondays and Thursdays .  Mark is afraid to learn to swim but he enjoys watching from the sidelines.  Wednesday night is housecleaning night and his laundry night.  They each do their laundry on different days.  He still requires help with his but hopefully in another year,  he will be doing it as independently as the other two guys are.

On a recent weekend visit home,   I was shocked at how he had cleaned up the bathroom after he had gotten his shower one night.  He disappeared for a while and when he came back to where we were, I asked him where he had been.  He said, “Come on “, and he showed me how he had learned to clean the entire bathroom after his shower.  I had no idea he could do such a good job.  He was so proud to show me what he had learned.

This past weekend He was home from Friday afternoon until late Sunday afternoon. He normally comes home twice a month. He looks so forward to coming home where he spends most of Saturday sleeping until noon and  relaxing in his old room listening to his i-tunes list I made from cd’s he’ accumulated over the past few years,  when he became interested in country music.  He’s always had an ear for a “hit” song when he is listening to the radio or whatever he happens to be listening to.  For example Friday when he came home, somewhere he had  heard the song “Fancy”.   He may not know anymore from a song he hears but a line or a few words in it but he wants me to get that song on a cd for him.  Sometimes, we may spend a weekend trying to come up with “the” song.  Sometimes its easy and other times, it is impossible.  But “Fancy” was easy for me. I know there’s not a lot of songs with word “Fancy” in it and  I remembered the original Bobbie Gentry song and found a copy of it on Amazon.  I didn’t realize how hard that one was to find (Bobbie Gentry version).  I wanted to order it soon as i found it  but he wanted me to find it on YouTube first. I think he wanted to be sure i had it right.  When i played it for him,  he knew that was the song but something wasn’t just right about it.  Then i remembered Reba came out with it later and that may be why he was unsure about it .. After he heard Reba on you tube, he knew then that was the one. We got lucky on that one.

It’s generally pretty uneventful and quiet around here when he visits which reminds him how lucky he is to have so much more activity at his new home.  I think that may help him feel like his “new life”  may not be so bad..  Hopefully in time,  he will settle in to it and maybe even enjoy it.

 

 

Pine Cones and Meters – Lisperlulu and Dica dica dous

Restraining Mark from intruding into the space of others, while trying to
keep him as happy as possible, required extraordinary personal control and
constant vigilance. In order to maintain calm and to avoid upsetting Mark, we
permitted him the activities he loved, within the confines of our own home and
private patio area. As a family, we stayed home more and more, avoiding social activities we had once enjoyed, as a way of coping with Mark’s idiosyncrasies.
We took the path of least resistance in parenting Mark, in order to shield us all from the misunderstandings of others.
We appropriately nicknamed him “King“.  Mark ruled any domain he
occupied, and reigned over it as his own private kingdom. He seemed oblivious
to the notion of interaction with others, other than in the game of chase he played
with us. Giggling and running from one of us in pursuit, most often me, he never
tired of trying to flush something, or to hide objects, before we could catch him
and prevent it. We all allowed him the game because he enjoyed it so much, and
his joy brought us all joy.
Mark developed irrational fears about harmless objects he observed. For
example, pine cones terrified him. He went into a panic when he spotted one,
pointing at it and cowering in fear, screaming, “Pine cone, pine cone!” The air
vents located under the eaves of houses scared him, and he was afraid to walk
passed them. As with other objects, he made up his own name for the vents. For
some reason, he called them “meters“. He avoided walking by buildings with
these vents and when he saw them he would point at them, screaming in fear,
“Meters! Meters!”
He made up odd words and phrases. I think he just liked the sound of
them. Words like “lis-per-lulu” or “dica-dica-daous“. When he said these words,
he laughed, his excitement demonstrated by hopping and hand gazing, which
became more prevalent as he grew older. The hand gazing,  stimming,
is common autistic behavior.

Every activity Mark indulged in became an obsession. And each day was
a repetition of the last. He loved sitting at the top of the stairs and bouncing all
the way to the bottom, over and over, climbing back up and bumping back down.
Daily he did this, wearing out the carpet on the stairs where his bottom bumped
from step to step, day after day, month after month, year after year.
Even his bedtime routine was challenging, to say the least. He would not
stay in bed. In and out, up and down, constantly in motion, until finally he fell
asleep. Only then could the rest of us relax, taking a brief respite from his
unvarying daily activity. The next morning, it all began again.

Mark’s odd behaviors in the early years

At age three, the most basic family activity like watching a movie after dinner was impossible. Mark was too distracting, always into something. He enjoyed complete darkness, and wanting all of the lights off. We often sat in total darkness! By now Mark loved flushing everything he could down the toilet. He would grab toys, tiny bits of paper, sometimes large hand fulls of paper, or any small object he could grab and run with before being caught. It was another game he played. I became ever-vigilant but he moved quickly, and was difficult to catch every time. The plumber was called regularly! Yet, I never saw this behavior as malicious or intentionally destructive, or even disobedient. I recognized it as an innocent game of chase and capture. It was the only game he played with another person.

He liked to close himself off in one of the kitchen cabinets where the potatoes were stored, and toss the potatoes up in the air. He did this for hours. Later, we realized this was when he learned to juggle three objects, sometimes four, at a time. Soon, he was entertaining family and friends with his showmanship. He searched for tiny objects, pieces of thread, anything he might find to take to a secret hiding place he had discovered.

Shoes became another obsession. They fascinated him, his own and everyone else’s! As soon as he could gain possession of any, off he would go, to line them against a wall. The back of the heels rested on the floor, the toes pointing upward, one shoe after another in perfect alignment.

Once, we went out to a restaurant with a group of friends,
he wanted everyone’s shoes, for he had noticed an accessible wall near our
table. To keep him appeased and occupied, everybody obliged him. Otherwise,
his outbursts would have been too disruptive. He quietly played his game, not
bothering anyone, and we all enjoyed our rare evening out with friends. Others
in the restaurant watched, in either amusement or dissatisfaction, but we learned
early on to ignore the disapproving looks. Mark looked like a normal and, in
many ways, precocious child. To the uninformed observer, he simply appeared
unruly and undisciplined.
Trick or treating became impossible. We tried for a couple of years, dressing Mark in costumes and going door to door with the other families in the
apartment complex where we lived. The other parents stood back and watched
their children knock on doors for their treats, while I had to accompany Mark.
Otherwise, he would charge full speed through every open door and head
straight for the kitchen. It was so embarrassing to have to go inside someone’s
home to get him. I sensed what most were thinking. What’s the matter with you?
Why don’t you control your kid?
Mark had a thing about the red oven indicator light that comes on when
the oven is in use. In order to avoid the episodic outbursts, which occurred
whenever he discovered it had been turned off, I left the oven turned on to the
lowest setting during the day. At first, I would turn it off when he wasn’t in the
kitchen, thinking he would forget about it. However, every time he discovered
that the red light was off, he began making flat, guttural-like moaning sounds,
and would not stop. “Ahhhhhhhhhh, ahhhhhhhh, ahhhhhhh, ahhhhhhhh,” he
would groan continuously. The only way I could stop it was by turning the red
light back on for him. Too make things easier on myself, I stopped turning it off.
Nevertheless, he was drawn to every available range, inside anyone’s
kitchen he could enter, to see if the red light was on the way ours was at home.
Then, he would inspect the range top burners, and comment that they were
either dirty or clean. He still is attracted to ranges, but now it’s the burners that
interest him the most. When we go to antique stores, he looks for vintage
stoves. If he finds one, he will inspect the burners and ask if we can buy it.

Kindergarten

mark

Kindergarten can be a challenging period for every family, and I knew we would be no exception but I knew Mark was different and was really going to be a challenge . By now at age five, Mark was more hyper and it was getting harder to keep up with every year. With the new school year approaching I knew I had to enroll Mark in kindergarten even though  I knew his maturity level was nowhere close to the average kindergarten age child.  Despite my hesitations, I enrolled barely five year old Mark into kindergarten just hoping the school system would give him a chance and provide us with some direction.  I knew he was not ready and could not cope but at least I knew we would finally get some help.

After only two weeks, the principal called me and asked if I could pick Mark up from school and keep him home for a while.  His teacher could not keep him because he would not participate in class and she could not focus on the other students; keeping up with Mark took up all of her time!   I knew the school system had to keep him enrolled because it was required that every child be provided a free and appropriate education when they were of school age and that someone would be in touch with me. They couldn’t just keep him out of school.  Before long the school psychologist called to set up testing for him.  A complete psychological was done and the results were mystifying to say the least.  I had never heard the word AUTISM and had no idea what was ahead for any of us. Surely they were wrong…

Soon we made an appointment for a second opinion at a child development center for a private evaluation. Somehow, the results were the same.   The official term for Mark’s diagnosis was Infantile Autism.

We now had a name for what was happening with our beautiful blonde hair, blue eyed little boy, and a new road to travel.

Mother’s Day Out

I decided to enroll Mark in a Mother’s Day Out program at church when he became eligible at the age of three. I thought enrolling Mark would be very beneficial for him. I had noticed his preference for playing by himself instead of wanting to play with other kids; he had no interest and much preferred playing alone. His favorite past time was sitting in the closet with the lights off and door closed while tearing pieces of toilet paper off the roll and throwing it in the air!

Mark was so hyper and was always moving. I had to have one eye on him at all times or he would get away from me in a split second. I enrolled him in the Mother’s Day Out program knowing it would be a challenge for the staff, but I was badly in need of time to myself. I took him on the first morning, dressed in a cute little plaid pinafore and white shirt. I nervously left him in their care at 9am and would return at noon.

When I picked him up, I walked into the large room with ten to fifteen other toddlers, but could not find Mark. I asked one of the workers about him and she started looking and couldn’t find him either! All of the workers started frantically searching in all of the nooks and crannies of the classroom. I went out into the hall thinking how easily he could slip out of a room without being noticed.

I heard him talking to himself quietly while sitting in the stairwell. He was sitting in only his diapers, barefoot, next to an open window. I ran to him and took him back to the room! When I asked about his clothes, they started to explain how he was playing in the water fountain, and his clothes and socks were soaked. They had taken his clothes off and placed them on the radiator to dry, and had forgotten about them being there. It was too late when they remembered where his clothes were; they were badly scorched.

The staff did not understand how Mark got out of the room because they had placed him in the playpen while his clothes were drying. He obviously climbed out of the pin and got out of the room somehow, during the commotion at snack time, they had said! I left Mother’s Day Out that day obviously upset over the entire fiasco.

I was happy he was not hurt but realized Mother’s Day Out would not be an option for us. Mark was not going to be able to participate in any activity that other kids did and I didn’t know what to do about it. Other kids in our apartment complex played together both inside and outside; Mark wasn’t able to play with the other kids because he could not stay with the group. He had to be watched at all times. I couldn’t expect anyone else to be able to watch him.

There were other things such as this , that made me realize Mark was different.  This story among other stories throughout his toddler years confirmed my suspicions that something was not normal with Mark.

 

home sweet home

Mark

One of our family’s biggest goals for Mark has been for him to live independently from his parents. Mark has also shared this desire, with an incredibly strong hope that living away from home would provide him with a new and exciting way of life, vastly different from the life with his parents he has always known. After two decades on a waiting list for supported living funding, Mark was granted his wish with an opportunity to move away and explore a new way of life!

Mark has lived in a nice house with a staff of caregivers, who rotate on a 24 hour/7 days a week basis for nearly a year.  Mark has two young men for housemates, providing him with the experience of sharing a living space with others. His routine is filled with different daily activities providing community experience for six hours on the days he is not working at the local grocery store, where he has been employed since 2000. He bowls on a bowling team on Tuesday night, Wednesday night is spent doing household chores, Thursday night provide him with a little bit of a break as he watches his housemates practice for their swim team meets; Mark is afraid of the pool, so he sits on the sidelines observing.

The variety of activities and new people to meet has been an exciting experience for Mark, much like the experience might be for someone moving away to college for the first time. With any big life adjustment comes change, and Mark’s experience has been no exception.

Recently Mark has struggled with the desire to come home to his parents, and return to the life and same routine he has had for many years before. During nightly conversations with me, I have noticed his desire becoming obsessive and almost frantic at times. He returns home to visit twice a month, which everyone feels is a sufficient amount of time away from home for now.  Hopefully he will be able to extend that to about once a month this next year.

Mark keeps a calendar on his closet door where he leaves an X mark on the days he returns home for a visit. We believe one of the reasons why he feels restless is because he struggles to entertain himself on the weekends when everyone stays home for some downtime. He has learned to play the radio as long as it stays on the same station; if the station is switched, he does not like to ask for help to fix it.  He also enjoys playing country music CDs on his CD player.

With any major lifestyle change, there can be periods of time with frustration and questioning whether the grass may be greener on the “other side.” Understanding everyone’s ability to deal with transitions is different is very important and we are very patient with Mark’s adjustment period. He is happy during his home visits and he is not ready to leave at the end of the weekend. I miss him very much when he is gone. We know that our decision has been the best for our family, and especially for him.

We have been very pleased with Mark’s transition into his new home and have loved seeing the advances he has made; he has learned how to do some kitchen work and other cleaning chores around the house!