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!!)

Why Different iz Good?

In looking at the Different iz Good website and Different iz Good blog, I have noticed there is something missing.  There is really not a good explanation of what you’ll find on this site.  I think it’s explained pretty good and definitely too lengthy as to why this nonprofit organization was founded and what the goal and mission are for the Turning Views Foundation and the Different iz Good movement.  You will also find information about the Founder, Camilla Downs.

Beyond that, what will YOU receive in return for your time spent on this website?

Let’s start with what Different iz Good is NOT – what you will NOT find here.  Different iz Good is NOT about being easy. Being a parent of a child with genetic differences is absolutely not easy.  The blog articles and resources on this site are not meant to put forth that message.  Different iz Good is also not about attempting to induce feelings of sorrow from visitors and it is not about spotlighting difficulties.

The message we do want YOU and anyone else visiting this site to leave with is that Different iz Good . . . Different iz Beautiful . . . Different iz Happy . . . Differnet iz Love . . . Different iz Magical . . . Different iz Powerful . . . Different iz Educational . . . Different iz OKAY and Different ROCKS! We want you to leave this website happier and lighter than you were when you first got here!

Our articles are written by me, Camilla Downs (Mom to Lillian who has an 18p deletion) and other parents of children with genetic differences (chromosome deletions and/or additions).  In the near future, we will have affected individuals themselves contributing articles and siblings of affected individuals.  Since we have views coming from different paradigms you may indeed see inconsistent posts.  You can leave this site knowing you have a well rounded view!

What the term “Different” means on this website

  • Chromosome Deletions/Additions
  • Genetic Differences
  • Albanism
  • Downs Syndrome
  • Autism
  • MS
  • Hearing Impaired
  • Speech Impairments

(This is not an exhaustive list; but you get the general idea.  If you have something to add please do so in the Comments section and we will add it.)

Our goal is to share with the world our views of raising a child that is different, sharing views from those that are different and sharing views from those that are siblings to someone who is different.  We absolutely want you to leave this website feeling uplifted, inspired, grateful and by all means motivated to help us Spread the Word that Different iz Good!

If you would like to contribute an article, please email to article @ differentizgood . org.  Thank you and please let us know how we are doing in the Comments section.

Recognising Different

(Guest post by Sara Jackson Johnson –  Sara blogs at Sara in Between)

Sara Jackson and her Family

This is my second post which has been brewing for a while, ready to be properly baked right here.

My little affected boy has a wonderful big “typical” brother.  As is often the way for siblings of any kind of non-typical kids, to Jacob, Louis is just his little brother.  In our family as you’ll see from our photo and my earlier blog, it’s a bit easier for him to think that at the moment because Louis does seem just like any other kid (even when he’s not) because the scary medical stuff just kind of melts away in the face of the normal day to day.  Despite this I talk and have always talked openly to both my kids about the fact that Louis has a rare genetic disorder.  That phrase and 18p deletion are drilled into both of their heads and come effortlessly out of their mouths.

Jacob is in his second year of Infant school at a wonderful local place that I’ve now discovered is the first choice for families in the area with children who have special needs.  It also has a very wonderful and truly local mix of cultures, faiths, religions and nationalities.

Both of these factors mean that I’ve been able to watch my son begin to recognise difference and recently, put his own version of labels and explanations on them.  So last year he gave a description as Parsi for his friend, helped by the school’s recognition of all the festivals that occur across faiths throughout the year.  He also began to see his own colour and others around him, helped by the drawing of a self portrait for his peg.  He also mentioned a girl in another class, who I had already clocked as having Down’s Syndrome.  He first described how she had someone to look after her in the playground, then that she wore nappies.  Which made me want to tell him that she also has a genetic disorder, a little like Louis, and that she needed different things to help her be at school just like everyone else.

Now that he’s a year older and still interested, I’ve given him the name for this little girl’s condition to add to his lexicon.  He’s also been talking about two twin boys in the year below that he and his friends chase around the playground daily (don’t worry, I’ve checked, apparently the boys ask them to and nobody tells them off).

He described them as having someone looking after them like the little girl in his year, and when we discussed it, that maybe they also looked a bit like her.  But he also said “I think they’re diabetic mummy”.  I said if he wanted to know more that he should ask their helper, but careful not to have him seem like a nosy or mean kid, I told him to explain that his brother has a genetic disorder too.  He came back without much further information which makes me curious to know why this adult didn’t engage with my curious but clearly sensitive and intelligent boy.  Still, that’s for another post.

The next time I dropped him off in the morning, he pointed out the boys as they were driven in and met by their helpers.  I could see that it was unlikely they had Down’s and for now he’s stopped wanting put them in a box in his head, but he’s drawn to them and waves and shouts their name every morning.

So whether he labels it, knows what it is or even understands it, my big caring boy is drawn to difference, to different kids and has a desire to reach out to them and try to make them smile.  And this makes me know that at least for now, we’re doing something very right indeed.