Elle at Work

The words "elle at work" may evoke the thought, if you know elle, of my favorite little person getting into something she has absolutely no business being in. Well..there are no comical  pictures to follow and no story of elle wreaking havoc...it's quite the opposite actually.  Before Elle's diagnosis, I always thought of her future and wondered who she would become, what she would be passionate about, what would her life goals be, what would drive her.  I hoped that she would have a kind soul and always treat others well.  I hoped that she would be the kind of person that had a positive impact on the people she met and one who always brought joy to others. No matter what she chose to do, I wanted her to be great :-)

After December 2, 2008 all of that changed.  At the beginning of this new journey when I thought of elle's future I saw something so different.  There would be no chance to set goals, no passion,  no contribution to society, no positive impact on others....Elle now carried a label of "disabled".  That was it...that was who she was and what she would be according to others.

The first 2 1/2 years were the hardest. Elle made very little progress. As much as I believed, with all my heart, that she would do more, I simply wasn't seeing it. I would NEVER give up hope.  We didn't meet a lot of new people...there was no need, or so I  thought at that time.  Elle had who she needed....me.  Meeting new people meant having to explain "elle" to them and quite frankly I didn't feel like telling her story over and over to people who were just going to say things like "Sweetheart, you know God doesn't give you more than you can handle" and my all time favorite "God gave her to you because she's special and he knew you'd take care of her."  Well gee-fu*#&ing thanks...God doesn't think I can handle raising a normal child??  Done-shut down!

When I finally got over myself, I realized that I couldn't have been more wrong . Changes began to happen when Elle first went to daycare.  She attended a class with children who had all sorts of disabilities and some who had none.  The teachers embraced Elle, and me, on day one and everything seemed to grow from there.  Elle still wasn't doing a lot, but she was becoming more alert and showing interest in her surroundings.  Something she had simply not done before.  It was exciting!  As the year progressed, so did Elle and so did my feelings about her future, meeting people and so much more. As I saw Elle becoming more engaged in her environment I realized that I had been holding her back.  By trying to protect her from the possibility of judgement from others and really...in a way avoiding it for myself, I was keeping her from the things that she needed in order to grow. 

Jump to today.  Elle, my favorite lil' person in the whole entire world, will be turning 5 in February.  Over the past 2 years I can not even begin to tell you how many amazing, loving, generous and supportive people have blessed our lives.  From new friends, to teachers, to school bus attendants, therapists, doctors, strangers, organizations...it's endless.   And it is all because Elle had a positive impact on them in one way or another.  Because somehow, that lil girl, without words, brought joy to someone. So when I think of Elle's future today, I see all the things I originally saw for her.  They are just presenting themselves in a very different way. 

My heart is so full when I see Elle achieving her goals...crawling, beginning to feed herself with a spoon, learning to use a walker to walk around the room and following verbal direction.  I know who elle is. She is driven by the desire to be independent and an undying sense of curiosity.  She is persistent, determined and enjoys variety. She has a sweet soul and manages to leave a lasting impression on almost everyone she meets. She is beautiful. She is the best teacher of life lessons.  She has taught me so much about life and myself.  


Below is an example of what I mean by Elle at work. It's a class assignment written by a special young lady that cares for Elle at daycare.  She is studying to become a teacher and was kind enough to share this with me. It touched my heart and  brought such joy to see how Elle has had an impact on someone.

PROFESSIONAL DEVELOPMENT REFLECTION TASK

EEX 3202

Professional Development Worksheet*

Name:  Mariah Tompkins____________________

Professional Development Experience.  Identify an experience that has contributed to your professional development.  Choose an experience that has influenced your insights about person with disabilities.  Select a category from the following list:

•         Video

•         Journal Report

•         Interview

•         Community Activity

•         Campus Activity

•         Other:

Brief Description of the Experience:

I work for a daycare that has after school care for students. At the start of the 2011-2012 school year a female child by the name of Elle joined our center for afternoon care. Elle has  lissencephaly, which the literal translation of this is smooth brain. Before her arrival at my center we met with her mother several times to discuss how to best accommodate her and what should happen if she has a seizure.

Key Insights about Persons with Disabilities (50 pts):__________

Emphasize ways in which you implement knowledge and skills learned in professional development in the teaching and learning process.

REWORDED BY Dr. Guardino:

What did you see during your professional development activity that provided you knowledge and skills about people with disabilities?

1. I have observed Elle having grand-mal seizures and petite seizures, and I have learned how to assist her with each kind of seizure, the steps to take for each kind, how to identify and care for her when they occurs.

2. I was provided with the chance to operate her wheelchairs, how to properly place her in it, take her out, and what buttons to push for certain actions of the chair.

3. I learned about her hip displeases and how it has effected her body and the way the Elle moves. She can move her legs into positions that someone without this would find painful and very uncomfortable

4. I have observed how her interactions with peers changed over time, and how her peers interacting with her have also changed over time. At first Elle was not use to being around other children and the other children knew something was different about her. But with time we have documented her sitting next to her peers looking at books, participating in songs, and moving around the room to be close to her friends. Her friends have accepted her into the room and they invite her to join in with them.

5. The most important thing that I learned was that the love and encouragement can take a child or person with special needs to a new level. Elle's mother informed us that her doctors said she would not live past 2 and her 5th birthday is coming up. She crawls, pulls her self up, and communicates the same way an infant does. When she first came to us she barley crawled and would not sit up long, now we have to chance her around the room.

Implications: Identify ways in which the preceding insights are likely to influence your actions as a professional in schools or school-related settings (50 pts):__________

REWORDED BY Dr. Guardino:

How will you infuse that knowledge and those skills into your future as a professional in the schools or school-related setting?

1. I will expect great things from all of my students and have faith in them. If Elle can learn to do all of these things then I believe that any student can learn to do anything as long as they set their mind to it.

2. I will be more knowledgable about seizures and how I conduct myself during these situations. I will be able to assist in the care of a person having a seizure.

3. I will be more understanding of parents and knowing that they know what is best for their children, especially children who have special needs. I will be open to any and all communication, for it will better that students time in my classroom.

4. Even though I already do this, but I will not be quick to judge someone just because they appear different. As a teacher I will accept all who walk through my door and I will be there for them in whatever helpful way they need me.

5. I was a part of best buddies and I would like to encourage students to open up their world and be a buddy to someone who may seem different, or have a special need. I would like to have an inclusion classroom to show how accepting I am and how open my door is.

Puuur-fect !

Up until until last year, Elle had never participated in Halloween.  Not because she couldn't but because I could not and would not dress her up in a costume.  As silly as it sounds, I didn't want to dress her up and possibly have someone laugh at the disabled kid who probably had no idea she was even dressed up in a costume.

That changed in 2011 when Elle was invited to go trick-o-treating with David's family.  I was telling a close friend that I really wanted her to go but was hesitant to dress her up.  She told me that Elle could go dressed up as something beautiful and asked if I would allow her to "make" this said "beautiful" costume for her.  I agreed  and was so happy that I did.  By the end of the week the costume was done.  5 yards of red tulle, lots of black hand cut, felt dots, 4 black and red pipe cleaners and a few black fuzzy pompoms later and Elle was a beautiful lady bug!!  Kate made Elle an amazing red tutu and antenna.  This accompanied with a red turtle neck and black tights and she was absolutely adorable.


I realized that night that it is ok for Elle to participate in Halloween like other kids .  I just had to find a costume that "worked" for Elle and also worked for me. 

Jump to Halloween this year and another invitation to join in family trick-o-treating. With a little research, we found the perfect or should I say...Puuur-fect Halloween costume for the kid!  The best part of all was that the costume was actually built around her pediatric wheelchair!!  Woo Hoo!  This meant Elle could be completely comfortable and we would not have to fuss with other modes of transportation for her.  While we can't take full credit for the overall design, we did make a few adjustments that made it even better. A little creative verbiage from David and it was done!   Elle had a good time and got lots of compliments on her costume.  A few people even wanted to keep her but this lil kitten is allll mine!

Over The Moon!

That is exactly how I felt about elle's latest and certainly greatest!!  For those of you who don't know Elle, she attends Mandarin Oaks Elementary School. This is a public school that has an ESE or Exceptional Student Education program. AKA...kiddos with special needs.  Anyway...Elle works with her physical therapist and also occupational therapist a couple of times a week.  At the start of the school year, goals are set for Elle.  Here are a few examples...

1. Elle will place items into a contaner and remove them given verbal and visual prompts.
2. Elle will initiate and complete an activity by clapping hands to participate in a circle with verbal directive and physical assistance in 4 out of 5 opportunities.
3.Elle will demonstrate the ability to spoon feed 3 bites of food with minimal assistance and verbal prompts and adaptations as needed 3 out of 4 trials.

Every few months an update is sent home to me so that I can see her progress.  While reviewing the report I noticed the comment under #3 which read, "Elle is demonstrating the ability to spoon feed with assistance and verbal prompts."  This sparked my curiosity as I had not given Elle the opportunity to use a  utensil at home as it always resulted in the same thing...a spoon being thrown across the kitchen and me cleaning up morsels of food from the floor and walls. I went to the grocery store and bought Elle a pack of colorful, toddler size spoons and macaroni and cheese.  Elle is food motivated so I figured I might as well pull out all the stops.  When dinner time came, I placed Elle in her high chair as usual.  I stood next to her and scooped the mac and cheese with the spoon.  What happened next left me speechless.  As I handed the spoon to Elle, fully expecting her to swat it out of my hand , she gently reached out, took the spoon from me and fed herself !!  After she cleared the food, she gently returned the spoon to the tray and awaited another bite!  I was over come with happiness and joy and a renewed sense of hope.  I about hugged the breath out of her and as I told her how proud I was of her and clapped my hands...she amazed me again by joining me in clapping for herself!!  Words truly can not describe the feeling of seeing this little girl display an appropriate, learned skill.  The fact that she was able to focus enough to learn, retain and demonstrate this everyday proves again that Elle is capable or doing soooo much more.  I had a conversation with her occupational therapist, who is the one that began working with elle on this skill.  She is also working on teaching Elle how to scoop the food herself!  This step is a bit messier as Elle hasn't yet perfected it....YET.

So today, on Thanksgiving...and everyday, I am thankful for the people, like Jenny, and all of Elle's teachers that are inspired to work with children that have special needs.  People that can see beyond the disabilities and can see what potential lies within each child...what lies within Elle.  I have always had hope of more for my daughter and she continues to show me that she IS capable of more.  If she could, she would tell me..."MA....gimme a minute...I'm working on it !".  I love you Elle and I am so proud of YOU!!

Saturday Daydreams

It's a lazy Saturday and I'm home with Elle who has just decided to grace me with her presence.  I love this kid.  She has been playing in her room all day and has just decided...at 4:59 p.m. to come out into the living room to see what she was missing.  She crawled over to the patio door and gazed out the glass panel. I walked over to raise the blinds a bit more for her and as  I said "Elle, do you see outside, do you want to go outside?" my thoughts began to roll....for a moment I imagined elle...outside and able to walk and run for the very first time. It would be fall...cool and crisp outside...and sunny.  She would have acres and acres to run across.  There would be fall leaves in piles for her so if she fell, they would catch her and the noise of the crumbling leaves would make her laugh.  She would get up and run and run and run until she could run no more and she would run back to me and collapse at me feet laughing hysterically and sharing that big elle smile.

Elle won't run today...but I will always have hope for the future.

Lions and Tigers and Bears...and Oh Yea...STINGRAYS!!

It's official...the Stingray has arrived....






  No...elle did not get a pet  but rather a new pediatric wheel chair...The Stingray.    The chair was long over do as elle had outgrown the Kimba, her previous chair. Yes, we call things by name around here..especially strollers seeing as elle has a plethora of them.  After living with the Kimba Spring for 3 1/2 years, I knew exactly what I wanted and didn't want in the next stroller.  Yes, I know...it's a wheelchair but I still refuse to call it that..hence..."stroller."


Elle has so much room and is so comfortable in it.  I absolutely love it.  It has a carbon fiber frame which makes it extremely light, the seat detaches from the frame allowing me to load it very easily into the SUV.  All adjustments are made with an allen wrench which makes minor adjustments at home both possible and easy. Nothing like having a random piece of the chair fall off and not having the ability to reattach it at home :-( 

Best of all...you can literally strip the seat down to the frame in less than 2 minutes, it's machine washable and dries surprisingly fast overnight. The chest harness and lateral plates are covered in a removable, neoprene cover that slip right off and also pop into the washing machine!!  Overall..it's a brilliant design. This should last little pee-wee for the next 4 years...hopefully.

As for the Kimba Spring....we made the decision to donate it to Wolfson Children's Hospital. We hope that it can bring a sense of independence to a child, to allow them to sit at the same level with others, to be able to go places they may not have been able to access and to go farther then their parents were able to physically carry them.

Random Acts of Kindness

Occassionally, you hear the phrase "A Random Act of Kindness".  I was the lucky recipient of one of  these random acts....what a great feeling :-)  Thank you to the unknown woman in the car ahead of me for your generosity and kindness...it had a positive impact on my day and hopefully on others.  At first, I wondered if the people behind me would each follow suit and "pay it forward" but then I realized that the favor was simply that...a favor...a random act of kindness.

I went to Chick-fil-a for lunch yesterday. When I got to the drive thru window to pay, I was told that it had already been taken care of by the car ahead of me. Confused, I said "I didn't know that person." The girl replied that the driver ahead of me simply said to tell me "Jesus loves you." I replied "Hmmm...well then...how about I pay for the car behind me and my message to them is to pay it forward. I left there feeling great and hoping the favor went on through out the day :-)

A Bill of Rights For Parents of Kids With Special Needs

I came across this by accident this morning and had to re-post. It was written by a woman who has a son with Cerebal Palsey. The blog is LovethatMax.com. If you have a child with Special Needs...or even if you don't, it's well worth the read :-) It made me cry...but it also made me laugh.

A Bill of Rights For Parents of Kids With Special Needs.

  We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary. * We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be "over it." * We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio.

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it. * We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too. * We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them. * We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics. * We have a right to push, push and push some more to make sure our children are treated fairly by the world.

Compiled in honor of my little boy, Max, and all of our beautiful children on June 17, 2009.

Yippee!! I'm 4 !!

I know it's June...better late than never :-) As hard as it is to believe for me...little elle, who by the way, is still very little...celebrated her 4th birthday on February 16, 2012. I was so excited to have my mom here to help celebrate. Unfortunately Grammy Sue was not able to make it, although she was missed. We celebrated with loved ones who truly love elle. I am so thankful to have these wonderful people in our life. They each enrich elles life eveytime they interact with her and for that, I will always love them. For me, elle's birthday is truly a celebration of her life and that she is still here with us. To be told that your child might survive until school is a feeling that I can't even begin to explain. It is certainly not what I focus on. I made a decision a long time ago to focus on the journey and not the outcome. Every birthday is another year that elle is proving them wrong. Whether you are new to the blog or have been a loyal follower, by now you have figured out that I write what comes to mind and punctuation doesn't really count here...it's my blog...I can do what I want :-) This leads me to why elle's name usually always appears in lower case. It's not because I am to lazy to hit the shift key but because elle is little, no matter what she will always be my little elle and if she could write her name she would prefer to write it in little letters. I know this :-) Her lunch bag has her name embroidered on it in lower case and her name is always on her birthday cake in lower case. This years theme was "Hello Kitty". We didn't get to carried away. I'm not really a theme mom, however, I will tell you that I LOVE "Hello Kitty". elle agrees. elle received so many wonderful gifts for her birthday. Each one was her favorite!! She loves bubbles and received 2 bubble blowers, an whimsical tea set, her first Cinderella tshirt, more clothing than she has space for, a gross of musical books, a sit and spin and her LEAST favorite...a bicycle helmet. She gave me the stink eye and fought while we put it on her head. If she could talk she would have said "Ma....I look like a fool in this thing!". Trust me, the fact that elle can't talk DOES NOT prevent her from getting her point across loud and clear!! Ask anyone that knows her

Butterfly Kisses

There are certain special things we wait for in our lives. Moments, feelings, milestones, events... first kisses. Yes, first kisses. I have been hoping and praying for 4 years that my daughter would some day be able to say to me..." I love you mommy" , to be able to reach out and give me a hug or to lean to me and give me a kiss. Well...I know first hand that dreams do come true. Elle gave me a first kiss a couple of days ago !!! It was with intent, it was not a reaction and it was all for me...my little butterfly kiss. I was filled with joy over this little person placing her open, wet lil mouth on the side of my face. It was the best kid kiss ever!!! All I have to do is say "kiss?" and she lays one on me. I will say that I certainly took full advantage of that today. I must have gotten 12 kisses. What?...Practice makes permanant :-) This is just another example that elle has the ability to learn and do more. I think we'll work on "hug" next :-)

Dreams Come True

A little over a year ago now, I was in my office at work when I received a phone call. Certain it was a customer, I promptly answered the phone. I'll never forget the voice on the other end or the words they said. The voice was infused with cheer and was so sincere..."Hi Lori...this is Brandi with Dreams Come True and I am calling to tell you that your daughter Elle has been chosen to receive a DREAM!! We are so excited and can't wait to do something really special for her." My head was spinning as Brandi proceeded to tell me about Dreams Come True, who they are and what they do.

Here's the whole, beautiful story...

In 1984, the late Thomas R. McGehee, Chairman of Mac Papers, and his wife, Delia, met a 17-year-old boy who had cystic fibrosis. This young man, George Lee, loved golf. When McGehee learned this, he arranged for George to be paired with Fred Couples and play in the Pro-Am of the TPC. Following an exciting round of play, Couples gave the young man his driver. A year later, George lost his battle with cystic fibrosis. His prized club was buried at his side.

That was the beginning of Dreams Come True. McGehee partnered with business leaders Hugh Jones, Chairman of then-Barnett Bank; Jay Stein and Jack Williams of Stein Mart; and the late Roy Baker, M.D., Chairman of the Board of Directors of University Medical Center. These gentlemen, with the help of McGehee's godson, Dr. Paul Wharton, put their heads together to develop Dreams Come True, a nonprofit organization dedicated to granting the dreams of children with life-threatening illnesses. Dreams Come True applies all contributions, unless otherwise designated, directly to the dreams of children. This is made possible by the support of Program Sponsors, Program Contributors and donors who make unrestricted donations. Unrestricted donations are used for administrative costs or dream expenses, as deemed necessary.

Since 1984, Dreams Come True has made the special desires of more than 2,700 children come true. Dreams provide these wonderful children and their families with a momentary reprieve from the rigors of medical treatment often associated with life-threatening illnesses. A dream temporarily removes the child from doctor visits, hospital stays, tests and needles and brings laughter, joy and childhood to the forefront. Dreams give the children and their families memories to carry them through the rough times and smiles to last a lifetime. Dreams bring hope and the promise of tomorrow.

Needless to say, it was a very emotional phone call. Brandi knew this was probably overwhelming for me, or any parent, and left me with her contact information.

It took about a year, but Elle finally got her "Dream" in December of 2011. Please note that the hold up was all on my part. I wanted to make sure I picked the right "Dream" for Elle. I wanted it to be something that was all for Elle, something that she could enjoy for more than a day and something that could aid in her development. During a conversation with Brandi, I finally asked her...what are some things you have done in the past for kids like Elle? Brandi said the magic words..."Well...in the past we have built Sensory Rooms, we have..." "STOP!!", I said. "That's it!!! A Sensory Room!!!" It was perfect. We chose things that would encourage Elle to move around her room, things that would promote hand-eye coordination and things that would encourage her to do whatever necessary to get to them.

To make things even more special, Brandi got in touch with Designs From the heART, an amazing group of women here in Jacksonville that turn 4 walls into an amazing space for these kids. With a little bit of paint and a whole lot of heart, they transformed Elle's room into something special for her. I always say that if Elle could choose, she would choose butterflies. Why? Because they are free to fly, to move and to go anywhere...this is what I would want for Elle. Freedom from the limitations that her body put on her. In just a few days Elle's room was done and we were ready for the reveal!

It was amazing!! See for yourself...




Elle loves her room and spends lots of time exploring it. I simply can not tell you how truly amazing the team at Dreams Come True has been. In addition to her room, Elle also received a jogging stroller so that we can run together and a bike trailer so that we can bike together. This was not the end, but simply the begining of a special relationship. The team at Dreams Come True has stayed in touch and frequently checks in to see how Elle is doing. Some how that little girl put her spell on them...and they love her!! We will always be grateful to Brandi, the entire Dreams Come True family and the women at Designs From the heART for giving us something so valuable and for what they do they eveyday for children and their families.

Welcome Back!

Silly as it sounds, I feel that if our blog could talk, it would say to me "Welcome Back!" I have so missed sitting and just downloading Elle's progress, sharing her stories and at times, just venting. Last night during dinner, our discussion brought up this blog and I was telling David how much I missed writting and then proceeded to explain why I have not given anything to the blog recently. I must have said something along the lines of "do you know how long it's been since I've written anything". It was more of a statement than a question, however, the answer really stunned me. He replied, without missing a beat..."yeah...it's been 2 years."

I don't know which stunned me more...the fact that it had actually been 2 years and I was thinking more like 1 or the other fact that he knew that.

The conversation switched from this to that, we wrapped up the night and headed home. I woke up in the middle of the night thinking about the blog, anticipating visiting it soon. Where would I start...2 years ago? So many things have happened in 2 years. Sure I could come up with a snapshot of Elle's past 2 years but would I remember the special little things that happened along the way or were they long gone? I guess we will just have to wait and see what comes.