Alumni Spotlight: Elliot Bennett

Elliot graduated from the Little Light House in 2013.

    

My precious son, Elliot was born February 2, 2007 via an emergency cesarean section.  While we were waiting for him to take his first breath, the doctor informed me that Elliot looked like he had Down Syndrome.  Elliot’s first three months were spent in the NICU at Arkansas Children’s Hospital.  We almost lost him several times.  I did not focus on the fact that he had Down Syndrome for a lot of that time because I was just praying he would survive.  He had so many health complications that I focused on those hurdles as they came.  I did not know a lot about Down Syndrome but I knew that I would learn all I could as I needed.  I got Elliot on the waiting list at the Little Light House when he was a month old and still in the NICU.  I did not know much about the school, but I knew I wanted to give my son every opportunity I could, and the Little Light House would be the best.      

 

Elliot, now eight years old, graduated from the Little Light House in 2013.

Elliot, now eight years old, graduated from the Little Light House in 2013.

 

Elliot was fortunate to be able to attend the Little Light House for five years.  We got that coveted call late July 2008 to let us know there was a last minute spot open! Elliot was 18 months old and not sitting up independently.  Two months attending school and he was starting to sit up.  He had some motivation… he did not want to miss out on what was going on around him.  Seven months later, he was walking with a walker.  It was so nice to have other people interested and excited about his progress.  Teachers, therapists, and office staff cheering him on every step of the way.  He loved the attention and that inspired him to make great strides year by year.  The Little Light House is a place filled with hope.  You feel it from the children, their parents, volunteers and the staff members.  So many parents of children with special needs are told when their children are born that they won’t reach certain milestones. 

 

The Little Light House is a beacon of hope that renews not only the children’s spirits, but the parents as well.  The staff love the students like their own and sees the potential in our children that the rest of the world does not see.  I see now more than ever that the LLH is a training ground for not only our children but the parents as well.  Training us to fight for the best for our kids, to cheer our kids on as they hit milestones the rest of the world thought they would never accomplish, to be advocates for our children and others like them, and to teach others that every life matters.  The Little Light House prepares us to be beacons of light to be sent out into the rest of the world.  The LLH prepares our students for school in the real world and prepares us how to face the real world and show them all that our children will accomplish! 

 

What I Wish You Knew: Cerebral Palsy from a Child’s Perspective

People with Cerebral Palsy are wonderfully and fearfully made by God, and each of us are unique. Let me tell you some of the things I wish you knew (but probably don’t) about CP.

1. I’M NOT WHAT YOU SEE// I have Cerebral Palsy, and it makes things a little more difficult for me. You see, my brain has a hard time making my muscles do their jobs, but that just means I have to do things a little differently than many of my friends. I am a kid with an imagination and dreams– I am not my disability.

2. I LIKE TO PLAY// And do everything that kids my age love to do! We may share the same favorite movie (psst…Frozen!), and I, too, am trying really hard to give broccoli a chance.

3. CAN’T CATCH ME// My disability is not contagious, it’s a brain disorder that I will have until I’m old and gray. I think it’s pretty silly that some people are afraid of me. I have CP, not cooties!

4. LET’S TALK// I might not be able to keep my head up or eyes on you while you’re talking, but I promise I’m still listening. Please be patient– I love to talk to everyone around me, and I have plenty to say!

5. I CAN BE ANYTHING// My diagnosis will not stop me from being successful. I don’t want your sympathy, I just want you to give me a chance. My disability will make me work very hard for my dreams to come true, but I will be such a strong person when they do.

6. OUCH// The muscles in my body hurt sometimes. People often think I am having a tantrum, but I am really trying to tell you that I’m in pain. A way you can help is by moving my body for me. I might only need my hips or legs moved to make it all better!

7. I AM BEAUTIFUL// Though you might think it was an accident, I was created with CP for a purpose. I am perfect and beautiful in God’s eyes, and so are you. Let’s make a pact: I will do my best to see you through His eyes if you do the same for me.

Kid Corner: Landon Warren

“Landon’s Story: By Jeremy & Heidi Warren”

On what started as a normal day in early October, we discovered what would become a journey that would bring every emotion you could experience to the surface. Our pregnancy was completely normal with ultrasounds at almost every visit and then us going in for a scheduled induction at 39 weeks gestation. When our second son Landon came out, that is when our OB/GYN noticed a true knot in his umbilical cord; he was blue and not breathing. After being carted away immediately he became stabilized a few hours later. We thought the craziness was behind us; little did we know. During that first night we received a call that his lungs had collapsed and he was unable to breathe on his own. We knew this was going to be a long journey and we would have to put everything in the hands of God. Landon spent the next weeks of his life in the NICU and PICU working on bottle feeding and learning to breathe on his own. It was later decided that he needed a feeding tube, fundo and a tracheostomy to help him with his feeding and breathing. We also had a long list of blood and genetic testing done for Landon after not knowing the cause for his weakness and struggling. During this time, we had many friends who volunteered at the Little Light House, some even working there. They encouraged us to get Landon on the waiting list early. So, without hesitating, we did exactly that.

Landon was discharged from the hospital on December 23, 2009 and we started a new way of life for all of us. Learning to care for home ventilation through a tracheostomy and feeding through a feeding tube was a challenge but it was what Landon needed. It allowed him to put his energy into learning to hold up his head, strengthening his core and using his arms and legs. At 6 months old we spent 2 weeks at the Mayo Clinic working with specialists to help Landon find a diagnosis and to discover treatment plans. We have yet to have someone give us a diagnosis but we just like to call it the “Landon Warren Syndrome” and love him just the way he is. At 8 months old we started physical, occupational & speech therapy to help Landon learn life skills. This is when going to the gym was hard work and not fun for Landon but he was able to gain some strength and gained some mobility. The summer before Landon’s 3rd birthday we got the phone call that Landon was next on the wait list at the Little Light House! We were completing the process of getting his trach closed off and starting school the next month. What a huge blessing the school was for Landon by allowing him to be surrounded by other kids struggling through disabilities and turning them in to abilities. The school has helped Landon learn to independently walk in his walker and work through his sensory issues. Landon has learned to interact with his peers and is working on communication with an electronic device.

November 2014: Landon at school, wearing the "coat of many colors" from the story of Joseph.

November 2014: Landon at school– wearing the “coat of many colors” from the story of Joseph

The Little Light House has not only changed Landon’s life but the lives of our entire family. The school has helped him develop new life skills and has encouraged him to want to try new things. It’s been a great support and resource tool for our whole family. We know as we prepare to graduate we will not be leaving the LLH, but only changing our school, and we will always be involved with the Little Light House and other alumni families. We are so thankful for everyone at the Little Light House and feel it a great privilege that we were able to attend school there for 3 years. We can say with confidence that this place is filled with the love of God and staff that loves children, such as Landon, just as unconditionally as their Creator.

Groundbreaking Excitement

It’s a new year, and here at the Little Light House we are more excited than ever to be so close to breaking ground on our facility expansion. With over 160 children on our waiting list, the need for a larger facility is greater than ever as children are waiting three years to be enrolled into our program. With services for children from birth to six, we are losing half of the time of eligibility to help each child reach their maximum potential. Châteaux gonflables

Thanks to a challenge grant from the J.E. and L.E. Mabee Foundation, we are closer to our goal of breaking ground than ever before. If we raise the remaining funds for Phase 2 of our project by October 2014, the Mabee Foundation will award the Little Light House with a $1,000,000 grant. This would allow us to break ground and expand our facility to include more classrooms and serve more children than ever before.

A Very Special Christmas

Christmas season at the Little Light House is always one for the books. We love to celebrate the birth of Jesus with our students, and teach them the story of the greatest gift of all. This Christmas season friends from around Tulsa have worked hard to make this Christmas one that we will never forget. We’d like to share a few of our Christmas highlights with you today and thank some very special people.

Emsa

The team at EMSA Oklahoma delivered special stuffed animals for each classroom at the Little Light House. These toys were distributed to students throughout the school and helped make for an extra special Christmas! Thanks EMSA!

 

The Christmas fun continued as we received word that our friends at the Tulsa Vette Set spent hours of their Thanksgiving holiday and their entire black Friday shopping for Christmas gifts for each of our students. Here’s a sneak peak of the day they dropped those wonderful presents off.

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The Little Light House partnered with so many wonderful organizations around town to throw our families a magical Christmas party, complete with Santa himself!

We couldn’t have pulled this night off without the support of the following people; we can’t say thank you enough:

  • Tulsa Vette Set
  • Jim & Deborah Rainey
  • Chick-Fil-A
  • Stan Krause
  • Green Country Puppeteers
  • Nancy Niewald
  • Janet Burnside
  • Laura Lambert
  • Parkview Baptist Youth
  • Petsmart
  • Ann’s Bakery
  • Cozmo’s
  • Pancho Anaya Mexican Bakery
  • La Margarita
  • Ludgers

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Mini-Laps is Here!

Mini-Laps 2014

Music through the Decades

With less than four weeks until Mini-Laps 2014, our biggest and most fun annual fundraiser, things are starting to get exciting around the Little Light House! This year’s theme is Music through the Decades and our parents are already working hard to come up with the best costumes and floats. Be sure to mark your calendar for September 20th so you can experience God’s glory as each of our 64 students take a turn around the track while the emcee reads a short biography. All the kiddos will be in costume and everything will be decorated. The whole day feels like a party! Don’t forget about the carnival immediately following Mini-Laps! Avis generously provides yummy food and free games for the families and guests to celebrate with! This year 23 of our students will take their very first lap around the track- an event that is sure to be memorable for all. This year we will have some special guests like Mavis Pearl and Harper’s Hut- It is sure to be a day for the books! This is the one event of the year where our families fundraise, so if you would like to sponsor a child please visit our website, www.littlelighthouse.org, or call the Little Light House at 918.664.6746. We hope to see you there!

 

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Volunteer Spotlight- Nicole Flippo

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Nicole Flippo is a dedicated classroom volunteer that loves and inspires the blue class each week. We sat down with her to find out what drew her to the Little Light House and what she loves about volunteering. Learn more of her story below:

  1. How long have you been volunteering at LLH?
    1. About a year and a half.  I started in January of 2013 and have been volunteering off and on since then.
  2. Why did you start volunteering at LLH?
    1. Every January, Cascia Hall, my high school, allows juniors and seniors to go off campus for volunteer work.  I signed up to go to LLH and immediately fell in love.
  3. Favorite part?
    1. Praise & Worship, probably.  I love watching all the kids get up and dance!
  4. Biggest challenge?
    1. I was really self-conscious at the beginning.  It took awhile for me to get outside my box and allow myself to be silly.
  5. Has volunteering here changed your outlook on anything?  If so, what/how?
    1. Before coming to LLH, I never really thought volunteering was for me.  Once I got here, though, I realized that volunteering is easy when you’re working with an organization you believe in.  Now I can’t help but think the best way to make an impact is to just focus on your passions.
  6. Would you recommend LLH to others in the community?  If so, who and why?
    1. I would recommend LLH to anyone looking for a way to give back, but I think teenagers who maybe aren’t quite ready to give up playtime (like me) would really connect with the students. 

Thanks for everything you do, Nicole! You are a gem and the Little Light House is blessed to have you!

From the Heart of a Parent: Michael’s Story

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By: Kristina Marriott

John von Goethe said it best, “In all things it is better to hope than to despair,“ but Goethe did not have a special needs child to care for. In today’s modern world it is so easy to lose hope, no matter who you are. As a family with a special needs child, we hear the words “limitations” and “cannot” by doctors, science, and our social culture on a daily basis.  However, there is a place that provides strength when families are weak, peace when overwhelmed, and hope when all seems lost. A guiding light in the darkest storms, a place one can call home, a place called The Little Light House.

Our oldest child and only son, Michael, was born on a rainy Thursday morning, October 18 of 2007. He was a hefty 9lbs 10oz, but considered very healthy. Naturally due to his size, he was slow to hit a few developmental milestones. However, he crawled, cruised, bounced, and at one time even talked. However, he soon lost all those abilities. So our journey begins. Medical test after medical test, tear after tear, question after question, Michael was finally diagnosed with Phelan-McDermid Syndrome (PMS) also known as 22q13 deletion, at the age of 2.  Somewhere between doctors’ visits, hospital visits, and therapy, we put Michael on the waiting list for the Little Light House.

Michael Marriot 02

We were excited that such a place existed for our son, but we had our doubts of even getting in; the waiting list was just so long.  I remember getting his waiting list letter, and through two major house moves that piece of paper stayed on our fridge for 1 year, 10 months, and 16 days.  One day, when checking the mail, an envelope caught my attention immediately. The envelope was white written in black ink and in cursive, addressed to The Marriott Family. The envelope was damp and practically pealed open. I pulled out the letter, unfolded it, and read the first three lines. I collapsed on the floor in tears. I couldn’t even finish reading the letter. Hysterically, I pulled myself off the floor, walked towards our fridge, removed the magnet holding the waiting list letter, and held the two papers in my hand. I quickly compared the dates and while still in tears, happily threw away the waiting list letter. It was finally Michael’s turn!

The transition to the Little Light House was a bit rough on us. We thought we knew what was best for him. He was completely dependent upon us and our extensive schedule centered on him.  The first year was rocky, but he made progress towards interacting with others, self-feeding, and becoming more independent.  The entire staff knew exactly how to push Michael in the right ways and helped us understand that Michael is capable of so much more than what science labels him as.

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The second and third year has been nothing short of amazing.  Every morning Michael starts his day out at the Little Light House with visiting the gym and bouncing on the trampoline. He then walks assisted to the slide and gradually climbs up, with minor help, to slide down. From there he walks to his class room with minor assistance to start his day.  He really is like any other active little boy, he just wants to have fun and explore life. If you would ask any teacher who the biggest child is, Michael’s name is sure to come up, but he is not just large in size, but in personality.  Each day he grows a little more; each day he gains a new friend. His smile grows a little bit bigger and his ambitions a little larger. As of last week, Michael has been walking UNASSISTED from his class room, through the hallway, and outside to our car. Nothing short of a miracle in my eyes and it is hard to believe this is his last year.

It is funny that what the Little Light House does not tell you, is that although they work with our children daily, in the end they really help your family as a whole. They have taught us so much, they have provided us with resources we did not even know existed, and they have continued to support us as a family. We are so sad, and yet so happy, that Michael will be graduating in just a few short weeks. The Little Light House has provided us a community, a system of close friends, that is forever with us. We are transitioning to Broken Arrow Public schools and although we are not sure what the future holds, we will face it head on.  If you gain anything from this article may it be the message and reminder of hope. Not every day is good, not every day is easy, but we are blessed that tomorrow is a new day and a new chance to try again. The best words I can share with you are Promoveo Promovi Promotum, which translates to push forward, move ahead, and advance.

Volunteer Spotlight: Tou Chang

Mr. Tou has been volunteering in the Yellow Class at the Little Light House since 2011. He faithfully comes every Monday and Thursday afternoon to serve some of our youngest kiddos. To say that Tou is dedicated to the work of the yellow class is an understatement. He consistently is there to support both the students and teachers alike, however they need.  He works late

Tou Changblog

hours at his personal job, yet still manages to come each week, always making the LLH a priority. Even when we know he must be exhausted, it never shows in his appearance or performance. He is always ready to help with any additional projects or tasks, whatever they may be. He routinely helps with our staff kids involved in the SKIP program which requires him to come on Fridays as well. Each student that has the opportunity to work with him enjoys that time immensely.

Volunteering is just one of the roles Tou plays at our school- he also serves as an ambassador. He is continually recruiting others in the community to get involved with our school. The youth group he mentors has taken projects home over school breaks, and now his brother is volunteering weekly, too! He also gets involved with some of our annual fundraisers, such as Laps for Little Ones. Tou collects money for our school and encourages others to get involved raising funds and awareness.

Aside from giving his time, Tou often brings supplies and snacks for the class. He even provided a microwave for Yellow Class when they were in need. For all of his amazing work, Tou was awarded with the Children’s Services Volunteer of the Year award in 2013 at our annual awards banquet, but we truly cannot thank him enough.

The Little Light House is so blessed to have Tou, and others like him, who help serve our children and carry out our Mission. We could not do what we do without the dedicated hearts of passionate volunteers.

Links for Little Ones 2014

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In less than a month the Little Light House will be hosting its 27th annual Links for Little Ones at Golf Club of Oklahoma on June 16, 2014. As one of the best golf tournaments in Tulsa, Links for Little Ones provides businesses and individuals the opportunity to support children with special needs by playing a relaxing round of golf at the beautiful Golf Club of Oklahoma.

We are so thankful for our ever faithful Premier Sponsor, Paradigm Realty Advisors, who year after years continues to support our golf tournament. This year, McAlister’s Deli is sponsoring a Sweet Tea booth out on Hole #1 for our golfers to receive complimentary sweet tea while golfing. No better way to spend a Monday in June than playing golf on a beautiful course, competing and winning prizes!Links at Golf Club of OK

It’s not to late to register for this fantastic event! There are still a few spots open! If you would like to inquire about sponsoring or playing at this event, please email our Events Coordinator, Erin Gebhard, at egebhard@littlelighthouse.org or call us at (918) 664-6746.