Tag Archives: zerotohero

One Word Photo Challenge: White

One Word Photo Challenge White

This post is in response to: One Word Photo Challenge: White | Jennifer Nichole Wells.  For more weekly photo challenges click here: One Word Photo Challenge | Jennifer Nichole Wells.


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Love Support Educate Advocate Accept by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

How To Motivate Me (part 3) It’s Doable

I’ve struggled these last few weeks. In my mind I know that I’ve accomplished so much, yet it feels as though it’s never enough. It’s hard to stay optimistic when it’s sink or swim and you feel as though you’re drowning…

The weight of hopelessness hangs heavy in the city air.  Everywhere I look people have no sense fo pride in their surroundings. No respect for themselves or others. They drown it out with drugs, alcohol and loud music all night long. My son runs around holding his ears and whining. He pulls me toward the door. He just wants to get out, and so do I.

Like prisoners we long for freedom. In our dreams we escape to a better place. A place we can thrive in security, knowing we have a home and a place we belong. We know that everything in this life is temporary and that better things await.

my seedlings (last year's)
my seedlings

Hardship, Perseverance, Character, Hope…

Faith.

Sadly, I feel as though the world has no place for us. Why don’t they understand? They seek a cure, but we don’t need one. They see disability were we see possibility. They think education is expensive, we know ignorance is even more expensive.

Is communication and literacy too much to ask from our community? I know special education costs money. My community pays for a certain quality of education for non-disabled children; but my community struggles with the negative perception that children with severe disabilities are a burden and not worthy of the cost.  Who are we to question who is and isn’t worthy of life?

hope

I have hopes and dreams like everyone else. Don’t stifle my hope. Believe in me. Know that I can do this. I’ll never give up. I’ll never stop trying. Everyday I amaze you. I accomplish more than you ever thought I could.

We may not all have the same abilities, but we have unique abilities. Everyday we learn and we grow.

I admit I’ve done my share of tilting windmills, struggling against seemingly futile causes. By its very nature, the victory is in the struggle. Who can win a battle, when he retreats in fear of loosing?

Imagine a world without disabilities, a world without special needs children. What kind of world would it be? A world of Stepford children and Stepford wives, with unnatural perfection – zombies, robots, lifeless and unhuman. Brainwashed into submission, they believe in man’s ability to create perfection. They’ve focused their energy on perfecting others, and neglected bettering themselves.

I see a world of possibility. Miracles happen everyday. I have a special child who brings out the best in me. He touches so many lives with his infectious laughter. He communicates joy without speaking a word.

So as parents, we struggle on believing that communication and literacy is possible and that we are capable of teaching him. We must always believe that the task is doable and that we are capable! We must guard our thoughts. The world has successfully educated deaf and blind children for hundreds of years.

For all of history, the worlds greatest thinkers have believed in possibility.

 For more on motivation watch this inspiring video by Dan Ariely : http://on.ted.com/Ariely

Image Sources:
Seedlings by Liana Seneca, all rights reserved
Hope Rainbow Mosaic by Nutmeg Designs – CC BY-NC-ND 2.0
Creative Commons License Love, Support, Educate, Advocate, Accept… by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.


Learning to Blog – Student, Teacher

I’m no expert in the subject, but I have learned so much from my fellow bloggers. A good place to start (says me because this is how I started) is by following The Daily Post. There really is a wealth of information on WordPress for new bloggers! In this post I will teach you the highlights of what I have learned (as a blogging 101 and blogging 201 student) in the past few months. There are tips and tricks for both new bloggers and experienced bloggers here. A Holistic Journey has some great tips on how to succeed as a blogger.

I blog therefore I am

Continue reading Learning to Blog – Student, Teacher

learning how we learn

When educating a child with autism or special needs it’s important to take a look at how we learn. But wait a minute, if this works, won’t it work for me too? Of course it will! Let’s take a look at the science behind how we learn new skills. Every time we learn a new skill the brain forms new connections.

Continue reading learning how we learn

Monday Madness: What’s your vision for the future?

It’s Monday again, and I’m still exhausted from a busy weekend. It’s 4:25 and I haven’t gotten anything (scratch that) as much as I would like accomplished.

Last week we had a PPT (planning and placement team) meeting and the principal asked, “What’s your vision for the future?” Setting goals without a vision for the future is like building a house without a blueprint. We all need a vision for the future. “To make dreams real first you need to have them.” I read it in a fortune cookie, but I took it as words of wisdom and taped it up on my refrigerator.

So what is my vision for the future?

Image of iphone displaying digital clock, resembeling the control pannel in the time machine car, from the movie Back to the Future

Well, let me adjust the circuits on my iPhone to July 1st 2027. My son graduated high school this year. He is now 21 (disabled children in the United States are entitled to a free and appropriate public school education up to the age of 21.) Stephen is living in a multi-family home with his own apartment on one side and family on the other. He’s able to take care of himself and he’s well prepared for independent living. He has the support of his family/neighbors. He’s not all alone in the world. He can communicate his needs, wants, thoughts, and feelings.

"Future Earth" note the missing color (green.)
“Future Earth” note the missing color

Rewind to today,

Continue reading Monday Madness: What’s your vision for the future?

Challenging Expectations

I sat and waited nervously for the pediatric neurologist, listening to the sounds of hospital monitors, hoping and praying that my son would live. We knew from the very start of the symptoms 12 days earlier, that something was wrong. On the 3rd day of these strange symptoms, the pediatrician in our church group thought it was gas. On the 8th day, parental instinct led us to contact our pediatrician for a more thorough examination.

in the hospital

For those of you who have not already read Our Story, our hospital stay began the Friday before Christmas. I feared the symptoms might get worse over the holiday. So I called the pediatrician, a sweet caring man, who listened to the symptoms I described.

in the hospital 2It was now Tuesday (the day after Christmas) and I had prayed frantically for 4 days, waiting for the prognosis. The pediatric neurologist was a very intelligent woman. At first meeting, she seemed to lack bed-side manner. She was very direct and honest right from the start – something that can only be fully appreciated in retrospect.

She told me my son had a life threatening condition called Infantile Spasms. She explained treatment for this seizure disorder was risky. The known complications of ACTH injections were: heart failure, liver failure, and intestinal bleeding. Without treatment uncontrolled seizures could lead to brain damage and death. The likelihood of severe mental retardation was over 50% even with treatment, and treatment had a success rate of about 70%.1st Christmas

It seemed like there were no good options. Terrified, I asked the neurologist what she would do if it was her child. She explained why she felt that ACTH therapy was the best option. Her experience with situations like this far exceeded my own, so I felt it was best to trust her expert opinion.

The 12th day with Infantile Spasms was the 3rd day of ACTH treatment. He was responding well and the duration and intensity of the seizures had improved. After many tests, EEG’s, MRI’s, CT scan, EKG, blood work, etc. I anxiously awaited the prognosis.

It was afternoon when the neurologist came back with the findings. There was no evidence of cerebral palsy on the MRI at this time, but it couldn’t be entirely ruled out yet. There was no evidence of tuberous sclerosis. There were no abnormalities in the structure of the brain, no evidence of brain injury, and there was no known cause for this life threatening seizure disorder. In fact the only abnormality noted was a benign pineal gland cyst deemed of no consequence.

Christmas in the hospital

I was left with a void where hopes, dreams and expectations once resided in my heart. I had no idea what to expect and I had no idea what the future would hold for my son. I grieved at the loss of unspoken dreams, but I never gave up hope. Over the next 7 years more was revealed. The picture began to form like pieces of a puzzle being put together.

With the dawn of each new day, new dreams were born, new hopes and new challenges.

Our son’s diagnosis include: cortical vision impairment (legally blind), failure to thrive, feeding difficulty, autism, epilepsy, hearing impairment (legally deaf), combined vision and hearing impairment (legally deaf-blind), food sensitivities, irritable bowel syndrome and/or inflammatory bowel disease (and suspected celiac disease which cannot be confirmed without the risk of making him sicker.) He is the epitome of special needs, and the joy of my life!

These are the lyrics to one of my favorite songs. The song is about the expectations we have for our children and challenging those expectations after a life changing diagnosis – The Good by Rachel Coleman (Signing Time):

The Good

It was you and me and the whole world right before us
I couldn’t wait to start
I saw you and dreams just like everyone before us
We thought we knew what we got

And then one day I thought it slipped away
And I looked to my hands to hold on
And then one day all my fear slipped away
And my hands did so much more

So maybe we won’t find easy
But, baby, we’ve found the good
No, maybe we won’t find easy
But, baby, we’ve found the good!

It was you and me and a new world right before us
I was so scared to start
I saw you and dreams just like everyone before us
But how did they move so far?

And then one day I thought it slipped away
And I looked to my hands to hold you
And then one day all my fear slipped away
And my hands did so much more

So maybe we won’t find easy
But, baby, we’ve found the good
Maybe we won’t find easy
But, baby, we’ve found the good!

Continue reading Challenging Expectations

We Made it to the Top!

enjoying the view

We made it to the top, taking breaks along the way and taking turns carrying the little guy. His low muscle tone and leg braces made it a work-out for everyone. It was a steep rocky hike, maybe a mile to the top of the mountain. The view is beautiful. Kids big and small love it!

we made it

family fun

This post is in response to: On Top | The Daily Post.

view from the top

my boys
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Love, Support, Educate, Advocate, Accept… by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Blogging for my Sanity

It’s amazing how much things have changed in the few short months since I started blogging.

My 7-year-old, non-verbal son is sitting in a nice warm sunny window watching Alphabet Amusement Park on Netflix. Over the last few months, he’s learned to navigate Netflix on the iPad like a pro. He unlocks the iPad with a pass code and without assistance, get’s on Netflix and chooses the correct user account (so that Netflix will stop prompting me to watch Leap Frog, Signing Time, or another movie/tv show for children that I’m already singing the theme songs to as I drift off to sleep every night…)

My blog has become a journal of personal experiences, a place to be myself, and to renew my strength. At first I wasn’t sure anyone would want to read what I wrote. My adventure in advocating publicly for children with autism and special needs began with a Facebook page. I quickly realized inspirational quotes, funny sayings, photos and bad news were the most popular Facebook posts. I was disappointed. I didn’t reach as many special needs parents as I had hoped. The resources I found over the past 7 years weren’t getting much attention. I had spent hours researching, reading, and learning how best to help my son, and I wanted nothing more than to share what I had learned, hoping the considerable effort I made would save some other exhausted parent time and energy.

Continue reading Blogging for my Sanity