Tag Archives: disability

What would the REAL Helen Keller have thought about AUTISM?

Her teacher was known as “The Miracle Worker.” In the 2000 Disney movie, Hellen was believed to have become deaf, blind and intellectually disabled due to illness as a young child.

Alabama_quarter,_reverse_side,_2003
Hellen Keller is said to have been quite an unruly child. She was prone to fits and tantrums, she screamed, she grunted, even hit & bit her teacher.

What compassion her teacher must have had to see in her potential? Her teacher was also known for her tempermant. She too was a fighter. She refused to give in to despair and fought against her own self-pitty.

"Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence." Helen Keller

Helen Keller is best known for being Deafblind, her acedemic achievements, and advocating for the rights of disabled individuals.

798px-Drano_Lake_accessible_fishing_platform_signage
I’m on a mission to find out what these legendary disability advocates would have thought or said based on historical facts. What would they have said about those who are not “neurotypical”? How would they have felt about autism and neurological developmental delays? What rights would they have fought for? Would they have fought for these children to be given equal access to language learning, American Sign Language (ASL), or Augmentive and Alternative Communication (AAC)?

Helen_Keller_with_Anne_Sullivan_in_July_1888
I have so many questions I would ask them…

Image Source:

Optimism – Helen Keller, by Liana Seneca
Helen Keller – Spirit of Courage – wiki commons
Americans With Disabilities Act – wiki commons
Hellen and her teacher, Anne Sullivan Macy – wiki commons

PPT Season, Tears, and Frustrations

Yet another phone call from school, and I’n choking back the tears…

 
I hope and pray for a place where he too can belong. Stephen is Deafblind and everyday we challenge the misconseptions we’re met with. 

So far we’ve been through 4 placements and this 5th one may not be his last. He was in a 50/50 preschool class, the autism program, the MPH (multiple physical handicap program, the KEY program, and now the school for the Deaf. He’s in 4th grade now with severe language and communication delays. There are only 2 programs that I know of nationwide that specialize in Deafblindness. The thought that maybe there just aren’t any schools in state equiped to deal with his primary disability is terrifying. 

So I pray for the courage to fight another day, to not give in to despair, to see the infinite world of possibilities that I see and for just once to meet a teacher that sees the same.

“Can’t” Should NOT Be In Your Vocabulary

This short bio also includes a TED talks video. What an inspirational story! There’s so much we can all learn from her!

Forever Free | Georgia Pathway to Language & Literacy

A native of Albuquerque, N.M., Rachel Kolb sees effective communication as essential to ideas, creativity and progress.  She received a BA with honors in English from Stanford and graduated in June 2013 with a coterminal master’s degree in English. While at Stanford, Kolb has been active in the Stanford Equestrian Team, Leland Quarterly, Stanford Daily and Stanford Power to ACT. She aspires to be a writer, scholar and public disability advocate. Kolb was named an American Rhodes scholar in November 2012 and will pursue an MSc in contemporary literature at Oxford beginning in October 2013.

She is also a deaf adult.

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Should I worry? It’s better to know.

It’s better to know. Does my son or daughter have autism? Is it possible that my son isn’t hearing everything I’m saying? Why doesn’t my baby look at me?

Fear of the unknown will keep us from reaching our true potential. When we know the facts we can make better decisions. The decisions we make will direct our path in years to come. These words apply to so many situations that we’re all faced with in life, but for parents knowing our children’s strengths and weaknesses will allow us to help them reach their full potential in life.

Developmental milestones in early infancy was one of my concerns. My son wasn’t reaching for or holding a rattle or exploring the small space within his reach. This was the only sign, such a small and seemingly insignificant sign, that something could be wrong. Sure he didn’t push himself up on his arms when I put him on his tummy. He didn’t want tummy time at all.

His older brother loved to sleep on his tummy as a small baby. At the time, it wasn’t recommended because medical professionals suspected a link between SIDS and infant sleeping positions. So we allowed him to get comfortable on his tummy while keeping a careful eye on him, and promptly turned him on his side as he drifted off to sleep.

But what does it all mean anyway? Should I worry? Well, the truth is maybe – maybe not.

Autism Awareness

As a parent, no words can instill fear like the words autism and special needs. I remember the first time I heard the words “developmentally disabled” used by my son’s pediatric neurologist to describe his future prognosis. I was crushed. If I could go back in time and know then what I know now, I’d see the future is uncertain for us all. I’d know that despite countless obstacles, I couldn’t be happier as a mother, and as an individual.


Image Sources:
48365 World Autism Awareness Day – CC BY-NC-SA 2.0
Autism Awareness – 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.

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.


How to Motivate Me (Part 1)

I look around and all I see are things that I need to do. Clutter everywhere, dishes to do, laundry to hang, dinner to prep or more greasy take-out and yet another stomach ache? It’s overwhelming and I’m not feeling motivated at all! So today I’m on a quest to find what motivates us…

Continue reading How to Motivate Me (Part 1)

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?

Monday Madness – Future Education, Employment and Independent Living

Here it is Monday again, where does the time go? I feel like crawling back into bed, curling up and going back to sleep. The weight of responsibility had me exhausted last night. Just thinking about the lists of things to do was overwhelming. My heart is not as healthy as it once was. I hate to admit, I’ve neglected my health for a while now.

My wonderful hubby picked up the slack for me last night. He gave our son a bath and sent him off to bed. I love to complain about my messy disorganized hubby, but he is truly a dedicated father and a family man. He loves his children more than they could ever imagine. I’m sure they wish he was wealthy (and I do too) but someday they will all grow up and realize the wealth he has is more valuable than gold. It’s a wealth that moths and dust cannot corrupt. It’s a wealth of experience, strength and hope.

Continue reading Monday Madness – Future Education, Employment and Independent Living

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