About Monica

Monica is married to her best friend, John, and is a proud mommy to her sweet, beautiful 10 year-old daughter, Samantha. Samantha was born with multiple disabilities as a result of a chromosome 18q- deletion. Samantha is Monica's inspiration for the many volunteer projects that she participates in for children and adults with disabilities. Her current project is a buddies program she created in 2007 for Samantha's elementary school in Katy ISD. The program is slowly expanding and now exists in one other elementary school and two middle schools. Her vision has been to create an environment where differences are accepted and attempts are made to educate those who may be fearful or unaware in relation to the culture of disability. She is achieving this by teaching all children and teens, with and without intellectual and developmental disabilities, to embrace differences and become caring friends. Monica has a background in ER Nursing and Cardiology Research Nursing.

CHANGE: New Year, New School, New Teachers

(Guest post by Monica McDivitt – Monica blogs at Like a Butterfly)

Have you ever felt this way??

This summer I tried desperately to figure out the best way to introduce Samantha to her new teachers and new school without focusing solely on her disabilities. Samantha is hearing impaired, cognitively delayed, motor delayed and does not have verbal communication skills. Transitions from one environment to another are usually most challenging because, in actuality, one cannot simply sit down and tell Samantha what is going to happen next because she does not understand this level of communication. Samantha is often confused and afraid during transitions and this often leads to resistance and discontent. Consequently, I am often left with a sick feeling – like I have abandoned or mislead her in some way. I also feel as if Samantha is left wondering “What happened?” As her mother, the one thing I can do to make it better for Samantha (and myself) is to help her teachers, paraprofessionals, therapists and other service providers to know and understand who she truly is, what her strengths are and what she enjoys the most. To do this, I needed to figure out a way to provide a substantial amount of information in a comprehensive but concise manner. If you have ever felt this way, then there is something you can do to help ease your mind and heart- make a portfolio about your child.

When I handed a big binder full of information about Sam to her new teacher on Sam’s first day of 6th grade, I was told it was a “teacher’s dream.” When Sam got out of school that day, a substitute teacher greeted me and told me how smart I was and congratulated me on doing such a nice job. I smiled and really appreciated the compliment but I love and care about my Sam and this is why I did it, not because I am “smart” or wish to be “supermom.” Sam is my world and I want people to know her and understand her like John and I do.

Yes, it took some time and effort but she is worth it and your child is too! Hope this helps someone. :)

Things I included:

FAMILY
Our Vision for Samantha.
Samantha Facts
Samantha’s Family
What Makes Samantha Unique?
History of Sam

SOCIAL
I am Sam. Sam I am.
If You Knew Sam Like I Know Sam…

EDUCATION
Early Childhood Intervention, PPCD, Elementary
Evaluation, School Photos & Artwork

MEDICAL
Genetics Report
How 18q- Affects Samantha
18q- Syndrome

HELPFUL HINTS
Sam’s Hearing Aids
Language Skills
Lunch Time with Sam.
More about Sam’s Needs
Contact Information

INSPIRATION
Magazine Articles including Sam
Blogs
Different Iz Good Articles about Sam
People First Language

About Guest Blogger

This post was written by a guest contributor.  Please see their details on our Contributors page.  If you’d like to guest post for Different iz Good check out our Write for DIG page for details about how YOU can share your stories and tips with our community.

Being Different Inspires Others

Gallery

This gallery contains 1 photo.

(Guest post by Monica McDivitt – Monica blogs at Like a Butterfly) We searched for Rodeo Championship BBQ Cook-Off booth numbers 913 and 915 where a rodeo dance was being hosted for a camp in which Samantha participates. The area outside of the … Continue reading

Samantha Enjoys Christmas in a Different Way

(Guest post by Monica McDivitt – Monica blogs at Like a Butterfly)

Samantha is running back and forth in the front hallway. She is flapping her arms and giggling. I watch, smile and walk into the kitchen to prepare breakfast. Suddenly, I hear bells jingling on the Christmas tree. I look over and see the top of the tree moving from side to side. I stop what I am doing and walk over to the family room to see what Sam is up to. Is she pulling an ornament off of the tree? Trying to sit on or tackle the tree? I enter the room. She is wearing her pink and gray leopard print gown. Her hair is messy but it is pulled back into a ponytail. She is sitting quietly in front of the tree, admiring the lights and trinkets. I know she was probably trying to sit on the tree but all is good. She is safe and happy and that is all that matters.

John and I carefully purchased a new tree this year because Sam had mangled the old tree. After 4 years of being leaned on, sat on and knocked over, half of the lights were no longer operating and the bottom branches were touching the floor. It only took one day before this new tree began to look like the old one, except this one has the multicolored lights instead of the clear ones. John and I figured Sam would enjoy the different colors.

The truth is that Sam doesn’t understand Christmas or any other holiday. She is usually quite easygoing but will run and look for a quiet place to hide if there are too many people around. She will refuse to eat in a large social environment, even if she is at home. For this reason, we miss out on many extended family gatherings. If we do attend, John and/or I have to chase Sam around to make sure she doesn’t grab and eat dirt from houseplants, play with toilet water, break something or go into meltdown mode. I then find myself explaining her behavior(s) to family and/or friends. Though I do not mind educating others about Sam, the ‘chasing around’ and meltdowns are not fun and the only solution to this type stress and chaos is to have holiday events at our own home where Sam can feel safe and disappear into her room if she feels the need to do so.

Sam is sweet, smart, funny and craves her routine. She recognizes that many things are different this time of year so we continue to follow a routine throughout the holidays. I know it sounds dull and boring but John and I must do what is beneficial for Sam. When change does occur we do our best to get her through it successfully. Since Sam is nonverbal and still does not understand how to use communication devices, I often wonder what goes on in her mind. How does she feel? What is she thinking? Is she afraid? I am not sure if these are things I will ever truly know but I have much faith and hope and continue to work with her daily.

For the time being, I know she likes Christmas trees, lights and ornaments. She picks one ornament off of our tree each time she passes and by the end of the night several ornaments are scattered throughout the house and I find myself picking up the same ones every night. I also know that she doesn’t care about presents and never demands anything (except her baths or snacks). It can take several days after Christmas before she is interested in opening a single gift. Tissue paper, bows, tulle, wrapping paper, gift bags are often more interesting than the gifts themselves and this is okay. As long as I see a smile on Sam’s face I know she is content. This is Sam. She is easy to please and John and I are blessed.

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About Guest Blogger

This post was written by a guest contributor.  Please see their details on our Contributors page.  If you’d like to guest post for Different iz Good check out our Write for DIG page for details about how YOU can share your stories and tips with our community.

A Poem for Special Teachers!

(Guest post by Monica McDivitt – Monica blogs at Like a Butterfly)

Sam and One of Her Awesome Special Ed Teachers

Teacher Appreciation Week is around the corner. Though I believe ALL teachers are invaluable, I am giving extra props to special education teachers. Surprise, surprise! :)

They aren’t just teachers. They are physical therapists, speech therapists, occupational therapists, researchers, nurses, and our children’s cheerleaders! Their patience, creativity, organization, ability to accept and understand the differences in each of our children and their ability to motivate, identify, appreciate and celebrate small victories are what make them different from the rest! Few things are more rewarding than knowing you have made an impact on the lives of children who are struggling to reach their full potential.

Two years ago I wrote this poem for Sam’s LIFE Skills teacher and paraprofessionals, printed it, framed it and gave it to them as a gift. It was written from Samantha’s perspective. I hope you like it:

You greet me every morning with a great big smile
Help me out of the car
Even if it takes a while

I am a little girl who cannot hear or speak
But still you understand me,
Week after week.

I have more challenges than most other people, you know
But you never give up on me
Even if my progress is slow

You help me with my daily life skills
Help me to succeed
Teach me how to sing and play
Adapt it to my special needs

I am strong and happy
I like to giggle and tease
Sometimes I may even drop down on my knees

You work very hard everyday,
Help me learn and grow
You are patient, kind and loving

This I wanted you to know
It takes a special person to be a teacher like you
And my Mommy and Daddy are grateful
For everything you do!

Happy Teacher’s Appreciation Week!

{If you loved this as much as I (Camilla) did and want to share with your Facebook Friends, just go here to do that!! Thanks y’all!}

About Guest Blogger

This post was written by a guest contributor.  Please see their details on our Contributors page.  If you’d like to guest post for Different iz Good check out our Write for DIG page for details about how YOU can share your stories and tips with our community.

Giving Sam a Voice

(Guest post by Monica McDivitt – Monica blogs at Like a Butterfly)

The Internet, Facebook and computers have been quite a gift to me. Some might criticize and complain that people share too much information or spend too much time “playing” on the Internet but the ability to form new friendships, network with other groups and families of children with and without disabilities, find resources and research from the comfort of my own home have all become invaluable to me. After all, this is how I met Camilla Downs, founder of The Turning Views Foundation and the Different Iz Good™ (DIG) movement and how I was given the privilege to be a contributor for her incredible mission.

Over the past few months, I have been exploring alternative ways to help my 10 year-old daughter, Samantha, to communicate. Sam was born with a chromosome 18q- deletion. As a result she has intellectual and developmental disabilities. Sam is also Deaf, nonverbal and her delayed fine motor skills do not allow her to hold a crayon without assistance.

Sam understands some American Sign Language but has not learned to sign consistently. If she does sign, her sign language is very subtle and if you blink, you will probably miss it. My husband, John, and I have tried several tools and devices over the years to help Sam communicate and participate in her daily and extracurricular activities – the Picture Exchange Communication System (PECS), object schedules and my own pictures with ASL signs are just a few.

In my first DIG contribution I wrote, “Do I wish Sam could speak? Would I love to hear her beautiful voice? You bet! For now, I get giggles, babbles, cries and gestures and if this is all I ever receive as far as communication, I can be happy.” I am true to Sam and still believe everything I wrote but I also know that Sam is an extremely bright child and she really makes me think…a lot! One day, recently, I was playing with Sam, speaking directly into her ear. In a sing-songy voice I kept repeating, “I love you.” Sam sat and listened attentively. She was incredibly engaged and when I least expected it and with a big smile on her face, I heard her vocalize “Ah la la.” I heard Sam say, “I love you” and I suddenly began to want more!

Success stories of the iPad being used with children who have disabilities have been popping up all over the local and world news: A recent New York Times article described the story of 7-year-old Owen Cain who has had a debilitating motor-neuron disease since infancy: “He does not have the strength to use a computer mouse but when a nurse propped her boyfriend’s iPad within reach in June, he did something his mother had never seen before. [Owen] aimed his left pointer finger at an icon on the screen, touched it — just barely — and opened the application Gravitarium, which plays music as users create landscapes of stars on the screen. Over the years, Owen’s parents had tried several computerized communications contraptions to give him an escape from his disability, but the iPad was the first that worked on the first try.”

When I read about and saw this story, I cried, thought about Sam and began to believe that she could be just as successful as Owen. Clearly, Sam’s disabilities are much different than Owen’s but, still, I immediately researched for more stories and articles and then purchased and downloaded the popular communication applications recommended by Camilla onto John’s iPad so we could present this information to Sam’s IEP (Individualized Education Plan) team. I felt so happy.

At our meeting John and I brought the iPad to demonstrate its greatness and how we wanted to help Sam to communicate. The team was impressed, but the reasons against the use of the iPad for Sam at school were: The district won’t allow it. Assistive Technology does not provide support for iPads. What if it breaks? What if it gets stolen? Is it going to be used as a toy or a tool? Would it be loud enough for Sam to hear? Does Sam have the key skills to use the device? I thought, “Seriously? Nooks and Kindles are allowed in our general education classes. What about our children in special education?” Frustrated, I stood up and voiced my opinion of unfairness and told them how the “rule makers” do not truly know or understand the needs of our children with disabilities. They do not live with our children everyday and they do not teach our children during a 7-hour school day. When all was said and done, I remained calm and level-headed but felt extremely disappointed!

Sam is using the Dynavox M3 for now. In order for AT to recommend and provide support for any device like the iPad, John and I were informed that the district needs data to support the decision. If they would give Sam a chance they would see Sam’s face light up when she works with the iPad and they would already have their data and I wouldn’t be writing this story. Sam is enthusiastic, curious and engaged with the iPad. She loves computers. She does wonderfully with cause and effect activities, she can use her fingers to draw on the iPad and I know with time, patience and practice she can learn so much more.

I am still working on this issue with the district. Anyone who knows me also knows that I do not give up and I am quite persistent. After a very recent inquiry, I learned today that the iPad will “probably” become more prevalent with students in our district, however, it will be based on an assessment to determine the need and appropriateness of the technology. I don’t think this is a “no” to the iPad for Sam but it’s not a “yes” either so I have much more work to do.

I don’t expect a “miracle” when Sam uses the iPad. I just believe in her and I know she can learn to use it. WHAT IF she could recognize that she is “Sam” or that I am “Mommy” or is able to recognize “Daddy” on an iPad? Camilla made me think about this after she read my first guest contribution and sent me a private, heartfelt message. How cool would that be? Aren’t we all deserving of such a gift?

I know I probably wear out the school administrators and they might want to run in another direction when they see me coming because I am always creating new ideas or asking for something. If I do wear them out it is only because I love and care about Sam – HEAPS!

Deep in my heart I am an optimist so I know this WILL happen for Sam. One day, very soon, she WILL have her own voice with an iPad and I will let you all know when this happens.

If you haven’t seen the video “Becoming Han Solo” or read Owen’s story it is definitely worth your time to click on this link: http://www.nytimes.com/2010/10/31/nyregion/31owen.html
WARNING: Grab a tissue. :)

XO Monica

(If you would like to share this with your Facebook Friends you can do that here! Thanks everyone!!)

Listening with my Eyes and Ears

(Guest post by Monica McDivitt – Monica blogs at Like a Butterfly)

Sam grabs my hand and walks me to the door that leads to our garage. This means she wants to go for a ride in the car. She usually grabs my purse, slings it over her shoulder, or cross body, and walks over to me. Today she communicated differently but I got the message.

After the hustle and bustle of Christmas shopping, visiting family, having family visit and being totally out of her structure, element and routine I believe Sam deserved to have some normalcy. She didn’t feel well on Christmas night and she is feeling the same today. She is congested and has what John and I usually call a “smoker’s cough” so I placed her in her car seat and we went for a drive… to nowhere. Actually we drove around the quieter streets of our Katy community, where it is calm and the trees are big and pretty. Sam didn’t mind.

As I drove, I had the car stereo on and it was probably louder than it needed to be but I love listening to music and Sam could feel the vibration of the bass from the speakers. I take a glimpse in the rearview mirror and see her beauty instantly. She is wearing a pink, holiday shirt with a peace sign on it, which she received as a gift for Christmas. Her hair is all pulled back into a ponytail with a big, pink bow and a curly lock of hair hangs on the right side of her forehead. She has an enormous grin on her face and she is kicking her right foot with much delight. I thought to myself, “She sure is pretty in pink and very happy.” I couldn’t help but smile.

Sam has never called my name or said Mommy and I am not always sure she understands what I say or do but I keep holding her and talking, reading, signing and singing to her and I encourage others to do the same. That’s all that matters. Sam smiles, giggles and cries. She thinks and observes and is a pretty amazing problem solver. When she takes my hand and walks me to the door that leads to garage, or walks me to the kitchen, bathroom, or even hands me a book or a toy, I know what she is saying. This month she has been giving big hugs and making more eye contact. Sam is communicating without speech.

Do I wish she could speak? Would I love to hear her beautiful voice? You bet! For now, I get giggles, babbles, cries and gestures and if this is all I ever receive as far as communication, I can be happy. It is more than many doctors ever expected. This is Sam’s language and I am always listening with my eyes and ears.