Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Thursday, July 28, 2011

Portrait of a Father

*All photos and video material created by Maisie Crow
This month we learned the disappointing news of an individual who posed fraudulently on an Internet blog as a father of a child with special needs. He exploited the most vulnerable of the community, by collecting funds and organizing bogus giveaways in an effort to raise money for a daughter who never existed.

But the lives of fathers with special children are sacred. And the twisted need of an individual to shamelessly mimic the depth of love and sacrifice these fathers make every single day for the sake of their suffering children, is nothing short of sacrilege.

This month, my post is the story of a man whose struggles are real. It is about a father and the dependent son he loves. It is about a young boy who lives with an unimaginable disease that will cause him to be hungry every moment of every day for the rest of his life. These two people; these invisible heroes do not blog or ask for money. They live quietly among us, surviving one difficult day at a time.    

This is the true story of Lon and Max Seidlitz.

Max has been diagnosed with Prader Willi Syndrome, a rare genetic disorder that causes an individual to develop an insatiable appetite. The excessive hunger and drive to eat is so powerful that most individuals require 24-hour supervision with all access to food secured. Things like kitchen cabinets, refrigerators, even garbage receptacles must become locked in homes of children diagnosed with this disease. 

But there is more to PWS than just a starving child, there are other symptoms that for most families are just as difficult to manage, things like behavioral meltdowns, obsessive compulsiveness, skin picking, obesity, diminished pain sensation, seizure potential, gross and fine motor weaknesses, speech issues, scoliosis, cognitive delays and social difficulties.

Please click on this photo below to view video
Hungry: Living with Prader-Willi Syndrome - By Maisie Crow
Hungry: Living with Prader Willi Syndrome by Maisie Crow from liveBooks on Vimeo 

While Lon is currently raising his son Max (17), he also has a daughter Courtney (18) and two step daughters: Carly (32) and Jessica (29).  He is quick to point out that he considers all of them to be his own; and although he is currently living alone with Max, he would like to emphasize how he has spent much of his life giving to all of his children.

Lon and Terry divorced when Max was five-years-old. At that time, Max lived with his mother and sisters in South Carolina.

“Terry is a wonderful mother. She cared for Max for the first nine years of his life while also raising three teenage daughters mostly on her own.” Like Lon, Terry has sacrificed much of her personal life in trying to accommodate Max’s unique needs. But despite all of her hard work, Max began to struggle in school. His symptoms of PWS began to worsen. His food-seeking and behavioral issues escalated.

Lon and Terry found the educational institutions, to be woefully unprepared in their ability to meet the unique needs of children diagnosed with PWS. Food access was not secure and often the center of classroom and holiday events. Teachers were not educated on the strong food-seeking desire and accompanying anxiety that is overwhelmingly distracting to children like Max. Because of this, individuals diagnosed with PWS struggle to control their behaviors and without the proper school supports in place, they can become easily enraged. Teachers with no specialized training can further escalate this volatile behavior.

By the time Max Seidlitz reached nine-years-old, his weight ballooned to almost 200 lbs and his behavior became unmanageable. He was a child in trouble. This heartbreaking scenario is all-to-familiar to many parents of children diagnosed with PWS. But Lon and Terry would receive further heartbreak and sadness when news came from the South Carolina school system that a residential placement was needed for Max with the closest facility being in North Carolina, a 7-hour drive for Terry, a 9-hour drive for Lon.

“I wanted no part of it,” says Lon.

And so, in 2003, Max Seidlitz moved to Maryland to live with Lon.

“I wasn’t ready to give up on him as the school system in South Carolina had…. I knew I had to step up to the plate and care for my son…. I felt he could get what he needed here in Maryland, where there are some of the best schools and hospitals in the country.

Lon has worked for over 20 years as the owner/operator of Advance Pool Service in Elkridge, Maryland. One of his first steps in caring for Max was finding an appropriate school. After several mishaps of placements, changes in IEP’s, development of behavior plans, which involved almost daily phone calls and weekly meetings, Max was finally enrolled at the Chimes School in Maryland, a private school designed specifically to educate children with special needs.

“They were able to do what no else had, get his behaviors in check and educate him!!!” says Lon.

But despite the school’s interventions, children with PWS experience rigid thinking patterns that can contribute to escalating behaviors. It is at these times that Lon is the most concerned, and although he is busy at work, his mind still worries about Max.

“I wait each day for a phone call wondering what situation may be happening at school, and what I may have to do to help resolve it.”

As a father, Lon says the world does not always listen to his perspective. “I found that teachers and doctors did not listen to what I had to say…. When you’re a Mom they take you more seriously but when you’re a Dad they don’t think you have a clue!” He complains of the many struggles he has faced dealing with educational systems, hospitals and insurance companies. “It never ends, you’re always fighting.”

In an effort to provide his son with some independence, Lon has given Max and after-school job at his pool shop, where Max has the responsibility of helping out with daily operations. When Lon returns to the shop, usually by 6 pm, they head back home together; where they complete homework and prepare dinner together. Having set meal times is critical to individuals diagnosed with PWS since they often anxiously anticipate the next scheduled time to eat.

In caring for Max, Lon has developed some unusual skills, like becoming somewhat of a nutritionist, learning about food, recipes, and diets. He has placed his son on a low calorie diet to support the weight loss necessary for individuals who unfortunately burn calories slower than most. Max now maintains a healthy weight and gets plenty of daily exercise with his father.

Eloping is also a common occurrence for children with PWS. This is when a child escapes from the home at night in the desperate search for more food. To address this serious behavior, Max was placed into a psychiatric hospital where he received treatment to help control this life-threatening situation. Lon has also now secured his home and kitchen area with an intricate alarm system to ensure Max is kept safe at all times of the day and night.

“Thankfully, this behavior has been resolved,” says Lon, “as I cross my fingers!” 

Caring for children diagnosed with PWS is an overwhelming struggle for two parent families, but for individuals like Lon, who is raising his son on his own, it becomes the focus of his entire life. By providing a very structured and fulfilling life for his son, Lon has given up much of his own personal happiness.

“My biggest challenge raising Max is that he IS my life. He is so much of my life, that I don’t really have a life any more…. It is my personal life where I lose pretty much everything.”

But Lon credits many family members in his life for giving him and Max so much of their support.

“I need to give credit out to my step mother, Surrell.” Lon explains how she has spent many days caring for Max, taking him to art museums and teaching him about the history of the Seidlitz family. She organizes art projects for him and coordinated Max’s first successful overnight stay this past spring.

Lon thanks Grandma Carol, his ex-wife’s mother who lives in Delaware. She provides care to Max for several days at a time. It is here that he is also able to visit his older sister, Carly.

Max also has many visits with his Mom, Terry, in Myrtle Beach, where he is able to see both Courtney and Jessica. “I have to give Courtney and Jessica credit for really taking Max in and being there for him with much love and support.” says Lon.

Another favorite visit for Max, are his trips spending time with his grandfather, Pop Pop Kev and his beloved Black Labrador dog named Smoke.

Lon credits many wonderful caregivers for making his life with Max possible. These individuals include: Ahmed, (of whom Lon is the most thankful), Ms Ruth, Beth, Sophia, Trish and Max’s most favorite, Jennifer Lewis.

Lastly, Lon thanks his ex-wife Terry, for despite their divorce, they worked closely together to meet the changing and demanding needs Max required.

“My ex and I have remained friends through it all for the sake of the children.” says Lon.

When asked what Lon wants the world to know, he answers without hesitation.

“I want people to know that PWS is REAL. That my son has a disability, and it is a real disability. I want teacher and doctors to know more about PWS so they can care for my son and others who have this syndrome. Max may not look like he has a disability, but he has been diagnosed with PWS, and despite this diagnosis, he still deserves to be treated like everyone else, with all of our love, care and respect.”

When asked what is the most rewarding thing about raising Max, Lon will tell you…

“I’m very proud that I did it. I’m proud of what I have been able to do for my son. It hasn’t been easy. But I watch Max and I see how far he has come…. Max will be with me forever, if he wants. I have discussed this with him. He knows that he is welcome to live with me, or in a group home. It’s up to him. I picture myself living happily together with Max, retired on the Outer Banks somewhere.”

Lon Seidlitz is a real father to all of his beautiful children.  He lives his life with his son, one precious day at a time. And it is because of Lon; that one young man diagnosed with PWS will enjoy the happy and healthy life that he deserves.

This is what it means to be the father of a child with special needs.

This is the sacred relationship between a father and his son.

It is these invisible heroes who deserve our attention, our understanding and most of all our respect.

Thank you Lon and Max for sharing your story with us


 If you would like to contact Lon and Max, they welcome your emails at: lonadvpool@verizon.net 

* All photographs and "Hungry: Living with Prader Willi Syndrome," a photographic video, were developed by Maisie Crow, a talented photographer and producer.

I would like to thank Maisie for her incredibly moving portrait of this special family. I thank her for her beautiful contribution to raising awareness of Prader Willi Syndrome and for showing the world the difficult issues families living with this disease must face each day.

For this and other poignant photographs and videos, please visit her website at: http://www.maisiecrow.com/.

For more information about PWS, please visit the national organization at: http://www.pwsausa.org/.
Thank you also to Latham Centers for posting this video and giving me the idea for this story. Visit them at: http://www.lathamcenters.org/ to see how they too contribute to the lives of so many diagnosed with PWS.

Also posted at http://www.hopefulparents.org/. Please visit this site for many beautiful stories from parents of children dianosed with special needs.


The Henrys said...

What a beautiful tribute to this man and his family, and to all of the other "invisible" heroes.
I just finished the video and the part where Max tells how much he loves his father is so heart warming. What an incredible man and father Lon is to Max.
I thank them for sharing their story and you for sharing it with the blogging world.

Lisa said...

Thank you Debbi, even tho I wrote this post, I still cry every time I read it or watch the video.

Lon and I worlked very hard together to get this story just right. I am very proud of it.

Lon and Max are beautiful souls. Lon's story truly represents the level of sacrifice that all parents of children diagnosed with special needs make for their children every day.

A thousand thank you's Debbi for your comment

Heather said...

I'm visiting from The Henry's. I'm so glad Debbi sent me this way. This is a beautiful story. Thank you so much for sharing it.

Lisa said...

Thank you for visiting our blog Heather! Debbi is a special friend (altho we have never met!)I appreciate your comments and am glad to have you as a reader! I must give much credit for this story to Lon...he was a brilliant editor and made sure we got the story just right.

Smilen Champ said...

My name is Jenna and I came across your site. Weston and Nicholas are courageous, strong and determined fighter. They are brave warrior's, smilen champ's and inspirational hero's. They are in my thoughts. I was born with a rare life threatening disease, 12 other diagnosis, developmental delays and suspected autism. Even though I have many challenges, I don't know what it is like to be hungry all the time, and starving. I do know though, it isn't a good thing, and I feel sad for Nicholas and Max that they have to go through that. www.miraclechamp.webs.com I love it when people sign my guestbook.

Lisa said...

Hi Jenna,
Thank you for visiting us and for thinking about Weston, Nicholas and Max. Thank you for sharing your website, we will be sure to sign it. We wish you all the best Jenna!

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