As you can imagine, it is very, very difficult for me to think about what lies ahead for Hope and for our family. Yet at the same time I find that, especially lately, I really need to connect with others who have traveled this road. It is definitely a catch-22, because in that journey to connect you will no doubt come across things that you’d really rather not see, aren’t prepared for, and wish you could forget. But every once in awhile you come across something that, while it is no less painful, is at least worth a fraction of the discomfort.
I came across this tonight on another blog, it is a bit long but I hope you will take the time to read it and watch the video that accompanies it.
…and say a prayer for us tonight.
‘I will always feed you’
The story of a father and son and their battle against a debilitating disorder | Click HERE to view original source page
Story by Steve Kelly
Photos by Maisie Crow
It’s 5:30 a.m. on a cold Thursday in late March and Lon and Max Seidlitz, father and son, have just risen from bed.
Max, 13, pads down the stairs from his bedroom on the second floor of the house he and Lon share in Elkridge, yawning and running his hand through his hair, seeking breakfast.
Max is hungry, but his hunger is not like that which most people feel when they wake in the morning, that low rumbling. Max’s hunger is more profound.
Indeed, psychologically, Max is indistinguishable from a person suffering from starvation.
He heads first to the kitchen, which he is barred from entering by a bolted lock that Lon has attached to the kitchen’s French doors. If Lon fails to lock the kitchen, Max will go there, secretly, and eat and eat, potentially until he becomes sick.
Max waits for Lon to unlock the doors and feed him breakfast. Missing breakfast or any other meal constitutes a major event in Max’s life because Max always feels as if he is starving, even when his stomach is full.
As Max says, he feels hungry, “every second; every measly second.” He describes this feeling as, “empty — like a clean bucket with nothing in it.”
This constant hunger is the ruling fact of Max’s life and by extension, the lives of those who care for him, especially Lon, who has taken on the lion’s share of the job of raising Max.
“I always tell him that I will always give him food,” Lon says. “I tell him that someone will always feed him no matter how hungry he becomes.”
Max’s feeling of insatiable hunger derives from the fact that he suffers from a rare genetic disorder called Prader-Willi Syndrome. The disorder, which results from the father contributing an incomplete number of genes to the child’s 15th chromosome, cannot be predicted or avoided and, at the moment, cannot be cured.
Max suffers from the syndrome thanks to an unlucky roll of the genetic dice.
In a way that researchers do not yet fully understand, the genetic damage that is a result of the disorder causes the hypothalamus — the portion of the brain that controls appetite and impulse — to misfire, according to Janalee Heinemann, director of Research and Medical Affairs for the Prader-Willi Syndrome Association USA, a nonprofit dedicated to educating the public about the syndrome and finding its cure.
Max feels as if he is starving because his brain fails to register the signal from his stomach that it is full. As a result, Max and others who suffer from Prader-Willi think about and seek food constantly, Heinemann said. They will, if allowed, steal and hoard food. And, if unchecked, most will eat until they are sick or even until the linings of their stomachs burst.
Although hunger is the overarching symptom and problem associated with Prader-Willi, the syndrome has other facets, which lead to other problems for those who suffer from it.
People with Prader-Willi lack the impulse control necessary to normally regulate their emotions and have trouble adjusting to unexpected change in their lives, even when the change is minor. They also tend to have obsessive-compulsive thoughts and mannerisms, of which collecting and hoarding is a symptom.
These phenomena also likely are due to some link between the missing genetic material and the functioning of the hypothalamus, though researchers have yet to discover that link, Heinemann said.
In Max, this aspect of the syndrome reveals itself in deeply-felt emotions, Lon says.
When Max feels an emotion, “it’s the most intense of that emotion,” he adds. “When he’s feeling it, he’s showing it to the nth degree.”
Because of this Max “is very empathetic and very loving,” Lon says. “He would do anything for you.”
Max also possesses a great sense of humor and loves to laugh.
Max’s gentle side reveals itself in his love for animals, especially dogs, and for the people who are most important to him. In addition to Lon, these people include his mother, Terry, from whom Lon is divorced; his sister, Courtney, who is 18 months older; his half-sisters, Jessica and Carly; and Lon’s girlfriend, Melody Eddy, who is helping Lon to raise Max.
Max also derives pleasure from collecting stuffed toy dogs (he has more than 50), marbles and crayon shavings, the latter of which he keeps in an otherwise empty dresser drawer. Max finds the act of shaving crayons soothing.
He also collects toy NASCAR cars, “Thomas the Tank Engine” trains and rap CDs with an ardor that borders on obsession. Once something tickles Max’s fancy, he must have as many of the thing as he can pile into a corner or put on a shelf.
Max’s emotional ardor has a difficult side, too. He is easily frustrated and will at times throw tantrums or dissolve into tears when his emotional kilter is upset or he is forced to absorb unexpected change. He also can become violent, even with those he loves.
Eddy has a scar on her right hand from the time that Max threw a terra-cotta flower pot at her while the two were locked in a stand-off that had started with a comment she made to Max. She had been trying to get Max to stop splashing in a pool and told him that she would no longer be his friend if he did not heed her request.
Max also has a tendency — as do many children with Prader-Willi — to flee the confines of home, often in the night, when others in the house are asleep. He might walk for miles until the police bring him home. Researchers do not know the reason for the behavior, though it likely stems from the search for food, according to Heinemann.
Lon calls this behavior “eloping” and says that, as recently as last summer, Max was eloping fairly regularly. To prevent Max from fleeing, Lon has locked down the Elkridge house as tightly as he has locked the kitchen.
Max has other features that are common to the disorder, including an IQ in the range of 65 to 75. Max has the cognitive abilities of a first-grader, Lon says, adding that, in other ways, Max’s abilities are closer to that of a 13-year-old.
Max has a “cleverness” and an ability to think “outside the box,” Lon says. “I think he would be a really great inventor because he thinks about things that aren’t really practical but has a way of making them practical.”
Finally, Max and others with Prader-Willi possess metabolisms that do not quickly burn and break down food, despite their omnipresent feelings of starvation. Their caloric intake, therefore, must be limited to prevent them from becoming dangerously obese.
Although he always is seeking it, food can be toxic to Max.
A minute after Max enters the dining room, next to the kitchen, Lon appears from a bedroom on the first floor in a white robe and unlocks the doors to the kitchen.
He serves Max a small bowl of oatmeal, which Max eats silently, savoring each bite.
Although Lon, 43, makes his living servicing and supplying swimming pools — he is the owner of Advanced Pool Service, in Elkridge — he has become a self-taught nutritionist and regulator of his son’s diet.
He has imposed a rigid weekday meal schedule on Max in part to limit the amount of food Max eats. In addition to the 5:30 a.m. breakfast, Max eats a second breakfast, at school, at 8:30 a.m.; a snack at 11 a.m.; lunch at 1 p.m.; a second snack at 4 p.m.; dinner at 5 p.m.; and dessert at 6 p.m.
The schedule also is designed to add structure to Max’s day, which helps Max to better maintain his emotional balance, Lon says. And it allows Max to know that a time to eat always is near. Max is so fixated on the schedule that he often counts the minutes to his next meal.
“It’s kind of going through my brain,” Max says. “What’s the time, man? I need to know the time.”
The schedule is the cornerstone of a larger daily discipline that Lon imposes upon Max — and upon himself — to ensure Max’s survival. Otherwise, Max risks dying young from obesity, Lon says.
As recently as 20 years ago, people with Prader-Willi normally died in their teens or early 20s from overeating, says Heinemann, whose 36-year-old son, Matt, has Prader-Willi.
Although the syndrome was identified in the late 1950s, many of the breakthroughs in understanding it have come in the past 10 years.
Because of this, most people have never heard of Prader-Willi and most educational systems and other societal institutions have failed to adjust to the unique needs and problems of those who suffer from the disorder, according to Lon and Heinemann.
That includes the parents and caregivers of children with Prader-Willi who must unlearn common cultural assumptions about the positive nature of food — food as reward; the giving of food as an act of love or compassion; food as the center of community and holiday events — lest they end up “loving the child to death,” Heinemann said.
Thanks in part to his eating schedule, Max is not now obese. But when Lon took primary custody of him four years ago, Max, then 9, weighed almost 200 pounds.
As Lon says, “Max was 4 feet tall and 6 feet wide” and even though Lon is joking, he begins to cry, pausing to collect himself, as he recalls that fat, confused little boy.
He compares the life that he and Max now share to the one lived by the Bill Murray character in “Groundhog Day,” who wakes up on a succession of mornings to discover that he is about to live exactly the day he lived the day before.
“That’s kind of how it is,” Lon says. “It’s the next hour, it’s the next half-hour, it’s the next activity, it’s the next meal until finally, at the end of the day, everybody goes to sleep. And then, at 5:30 in the morning, it starts again.”
Max is less metaphorical.
“My life revolves around the clock,” he says.
With breakfast finished, Lon prepares to release Max into the world for another day.
He hopes that the adults who will care for Max today will assist Max in adhering to his eating schedule and not present Max with situations that might lead him to become upset or violent.
Max attends The Chimes School, a private school for disabled children, in Baltimore.
In checking Max’s school bag, Lon finds a note stating that, on the previous day, Max was sent to a kind of time-out room at Chimes for refusing to follow directions and then yelling at a staff member.
In the past, Max has hit his teacher at Chimes, earning him a trip to what Chimes officials call “the resource room,” where he sits with an aide until he has calmed himself enough to return to class.
Students are sent to the room when officials decide that a student’s behavior is disrupting his or his classmates’ ability to learn and other less-restrictive behavior modification measures have failed to change the behavior, said Lisa Corona, Chimes’ assistant principal.
“You had a resource yesterday, Max,” Lon says, holding the note.
Max sighs. “Yes,” he says.
“I thought you said you had a good day.”
“I meant after the resource.”
“I don’t want to talk about it.”
Lon lets the conversation go for the moment.
Max heads into the living room to wait for the bus that will take him to Chimes. He is excited about going to school today because his class is scheduled to dye Easter eggs and today marks the last day before a week-long spring break begins, he says.
In his lap, Max holds an Easter basket he made in school by weaving strips of pink and white paper around a cardboard container. He intends to put the eggs he will dye in the basket, he says.
He studies the basket, turning it over in his hands. He wonders aloud how real baskets are made and admits that the process perplexes him. He spends a few minutes pondering the intricacies of the basket before announcing: “The best thing about it is that it was hand-crafted by a child with help from his teachers.”
Normally, Lon does not allow Max to participate in school activities involving food, because the presence of food distracts and can upset Max’s emotional balance.
But he has given Max permission to dye the Easter eggs because he believes he cannot continually deny Max a chance to participate in normal, fun activities, even though so many involve food.
The bus arrives at 7 a.m. and Max heads out the door. Lon calls after him, “Max, have a good day, bud. Love you!”
But Max, clutching his basket, doesn’t answer. He is already at the bottom of the driveway and stepping onto the bus.
Max was born June 20, 1994.
His muscle tone was so low at birth that he could not suck — a typical symptom of Prader-Willi Syndrome — and so had to be force fed.
Max also was slow to develop in other ways that are common to the disorder. He did not roll over until he was about 15 months old and did not walk until he was 2.
His birth was followed by a span of about three years in which Lon and Terry took Max to doctors, seeking to discover the source of his problems. The doctors said Max likely had Prader-Willi Syndrome, but that they were not entirely certain.
When, later in infancy, Max began to evidence hunger, Lon and Terry considered this a good sign and fed him whenever he cried.
When Max was about 4, Lon and Terry’s marriage began to fail, a fact Lon believes was related to the strain of caring for Max. Hoping for a fresh start, they moved to Myrtle Beach, S.C., where they owned rental properties and where Lon hoped to become a property manager.
But it didn’t work. Lon came back to Maryland to continue his pool service business while Max stayed in Myrtle Beach with Terry, his sister, Courtney, and Terry’s daughters from a previous marriage, Jessica and Carly, who were teenagers at the time.
Terry enrolled Max in elementary school, where he was placed in special education classes. Thanks in part to his low metabolism, he often slept in class and, unable to temper his emotions and handle abrupt change or transitions, rebuffed his teachers attempts to discipline or control him.
In the meantime, Max began stealing and hoarding food. He became obese. He also started “eloping” from the house at odd hours.
Once, when he was 7, Max wandered off to an equestrian stable two miles away. The owner read Max’s medical bracelet and called Terry. He also gave Max a drink and a bag of trail mix because Max had told him he was hungry.
“Max was happy as could be,” Terry remembers. “He could have stayed there all day, you know, while we were going crazy thinking that he was dead.”
The fact that she had three other children in the house made it difficult for her to keep food locked up and to control Max’s diet, Terry says, adding that Max’s need for constant attention also forced her to stint on the attention she paid to her daughters.
As Max got older and bigger, he became harder for Terry and his teachers to control, according to Lon and Terry. When he was 9, school officials suggested sending him to a private residential facility.
“He weighed a lot and he was strong and he was out of control,” Terry says. “They couldn’t control him at school and I couldn’t control him at home. … I needed help. I really didn’t feel like Max was safe.”
Lon, who until then had played a relatively minor role in raising Max, decided that he didn’t want Max to go to a residential facility.
“Emotionally, I couldn’t do that,” he says. “I just felt like it wasn’t time to give up on Max. If Terry felt like she couldn’t handle him anymore … then I needed to step up. It wasn’t that I couldn’t do it. I knew I had to do it.”
Max came back to Elkridge to live with Lon in the early summer of 2003. He was so fat “he could barely fit through my door,” Lon says, adding that he remembers Max looking at himself in a mirror and asking, “Why is my butt so big?”
Lon stops in the midst of telling this anecdote to stifle tears.
“I just said that God makes people all different ways — big, small, little, tall, whatever — but that he could work on it.”
And so they did.
Lon began by restricting Max’s diet, at first allowing Max three meals a day totaling 900 calories. At the time, Lon had begun regulating his own diet to control high cholesterol and had stripped the house of most junk food and snacks.
He also imposed on himself and Max a daily regimen of exercise, mostly walking.
The result was that Max began losing weight, a few pounds a week.
“Over the course of a year he lost about 65 pounds,” Lon says. “He went from about 185 to 115.”
Max arrives at Chimes a little past 8 a.m., Easter basket in hand.
He is the only student at the school with Prader-Willi. The six other boys in his class have disabilities ranging from Attention Deficit Hyperactivity Disorder to autism, according to Sharon Wisniewski, Max’s teacher.
Max and three other boys in the class have one-on-one assistants who help them complete their lessons and other responsibilities. Max’s assistant is Vermel Hewlett.
The school has a lengthy instruction plan for Max that includes goals for his educational and social development. When Max was younger he had trouble speaking in a way that made what he said understandable to others, Lon says, adding that Max mostly has overcome that problem.
Max can tell time to the half-hour and is working on quarter-hour increments. He also is learning to write and recognize lowercase letters — he has mastered uppercase letters — and to perform math problems of simple addition and subtraction.
Another of Max’s goals is that he control his behavior in class, which he admits he finds difficult “absolutely, one-hundred-thousand-fifty percent.”
As the day gets under way, Wisniewski makes a point of reminding the boys that, although today is the last day of school before spring break — and therefore a day in which it is easy to become excited and emotional — that everyone still must behave.
“We don’t want anyone to have a resource today,” she says.
The day begins with a lesson in which Max and his classmates identify the day of the week, the date, and solve some simple math problems involving money. At about 8:45 aides bring breakfast into the room. Max quietly eats a bowl of oatmeal at his desk.
After breakfast, the class splits into reading groups. Max and Hewlett head to another classroom where they begin a one-on-one lesson.
At one point in the lesson, Hewlett gives Max an exercise in which he must draw a line between a word and a corresponding picture. Max notices that one of the words is “bread.” But he sees no “bread” in the picture column. The column apparently shows something related to bread, but not bread itself.
He becomes frustrated. His face reddens. Inside him, the mysterious and complex emotional and psychological triggers are firing.
Due to Prader-Willi, Max cannot process complex information quickly, Lon says. He adds that Max also possesses a natural “stubbornness,” unrelated to the disorder that leads him sometimes to wage “power struggles” with people, including teachers.
“There’s no bread!” Max says, reading the lesson, incredulous. “It says, ‘Draw the line between the word and the correct picture.’ It does not show the correct picture!”
Hewlett asks if Max needs a minute to cool off. Eventually, though, she shifts to an activity in which Max has more success and he begins to regain his composure.
“Max is not going to give in and the more you raise your voice or the more you try to twist it, the more he’s going to focus on exactly what he’s thinking,” Lon says. “And then he’s going to shut down. And at the point he shuts down that’s where he strikes out because at that point you’re demanding that he understand what you’re saying.”
In the end, Max has not given in.
But neither has he lashed out.
After an 11 a.m. snack of potato chips, Max heads to speech therapy, where he is working on improving his social and conversational skills, according to Lynne Fadem, his speech-language pathologist.
“He has been doing well,” Fadem says. “He’s learned a lot.”
Today, Max will practice speaking on the pros and cons of a subject. He works on this lesson with Misty Merkel, an intern from Towson University. They decide that they will speak about the pros and cons of dyeing Easter eggs.
Max has no problems listing the pros: He likes to eat Easter eggs and likes their bright colors. But when they endeavor to list the cons of Easter egg dyeing, Max balks.
“Unfortunately, I can’t think of anything I don’t like about dyeing Easter eggs,” he says.
Merkel patiently encourages him to think of some cons and Max begins to fidget and play with his hair.
But he reins in his emotions and finally acknowledges that certain cons to dyeing Easter eggs exist, but only if Merkel will acknowledge that these are opinions that other people, and not himself, hold.
Later in the lesson, Max and Merkel work on naming the pros and cons of watching too much television.
Max has a pro: “Because it might help you to pass the time if you’re waiting for breakfast, lunch or snack.”
The time to dye the eggs has arrived and Max’s class moves to the school’s “practical living area,” which contains a kitchen and several tables.
Max sits at a table with two other boys and waits as Wisniewski prepares bowls of dye. She gives each student two eggs and a bowl of dye and instructs them to share the dye with classmates.
Max dips his eggs into the green dye in front of him then moves around the room, politely asking his classmates if he might use their dye. He produces one turquoise and one bronze egg. He hands them to Wisniewski for drying.
Then, suddenly, the class is finished. The moment that Max has been anticipating since the morning has come and gone. If this disappoints him — or if the presence of food is causing him anxiety — he does not show it.
But maybe that is because it is now 1 p.m. and time for his lunch.
He signals his readiness by telling Hewlett, “I’m hungry.”
For lunch, Max eats a tuna sandwich with a slice of American cheese and a serving of red kidney beans. When he is finished, he runs his finger around the rim of his plate, picking up what he has missed, then licks his finger.
A little more than an hour later, the school day is nearing its end. Wisniewski hands back the now-dry Easter eggs to Max and his classmates. Each boy also receives a few chocolate eggs and jelly beans. Max puts the eggs and candy into his Easter basket and the basket into his school bag.
A few minutes later, Max’s bus is called and he is off. His day has been a success.
“Bye, Max. Have a nice holiday,” Wisniewski says as Max heads out the door.
“Trust me,” Max says. “I will!”*
For dinner that night, Max eats one of his Easter eggs in an egg salad sandwich. Lon has taken possession of the Easter basket and its contents and locked them in the kitchen.
After dinner, he and Max walk for 45 minutes around the neighborhood and, after the walk, Lon allows Max to eat a piece of chocolate from the Easter basket for dessert.
“Candy is very delicious,” Max says, savoring the treat.
He will have nothing more to eat today.
He heads to the living room and settles on the floor with a Chinese Checker board and some marbles. He arranges the marbles on the checker board by color and seems to lose himself in the task. He is looking forward to tomorrow, when he will head to South Carolina to spend the holiday with Terry.
For the first time today, he seems relaxed, happy.
Yet an aura of foreboding surrounds Max. His future is uncertain.
Lon expects to take care of Max, in some way, for the rest of Max’s life. The life the two share exhausts him, Lon admits, and leaves him with less to give to other people, especially his daughter and his girlfriend.
But his love for Max, and his duty as a parent, have motivated him to confront his son’s disorder, he says. “Just watching Max’s struggles makes the things I go through on a day-to-day basis seem fairly small,” he adds.
The manifold physical, psychological and emotional problems associated with Prader-Willi have made it difficult for Max to adjust to school and life in the outside world generally, Lon says. In turn, the ignorance of Prader-Willi in the culture has made it hard for the world to adjust to Max and his unique needs and problems.
“Max doesn’t fit into the program,” Lon says. “Prader-Willi doesn’t fit into the program.”
But Lon hopes that Max will find a place in the world, nonetheless.
“Everybody has a place,” he says. “Everybody can provide something to the community.”
Max also has a wish: “I wish I could just be like everyone else.”
In the meantime, Lon has promised him: I will always feed you.
Later, when Max is asked if he has any heroes, he will say: “Father and momma. They care about me, they love me, they take really good care of me.”
Not to push the metaphor too far, but perhaps the life that Lon and Max are creating follows a process that is akin to weaving a basket. Each day is like a strand that is woven with the other strands, the other days. Despite the challenges they face, their goal is to weave a life for Max that is bright, strong, colorful, a thing of beauty and utility.
Max plays with his toys a while longer then heads to bed.
He sleeps and dreams — perhaps of food, but perhaps of something else, perhaps of his stuffed dogs or his coming holiday with his mother — until morning comes and different dreams fill his mind and he begins his journey all over again.
E-mail Steve Kelly at firstname.lastname@example.org.