A Sign of the Times

With the COVID-19 crisis at hand – frankly I’m sick 😷 of hearing👂🏻 about it!!! As with so many things in my life, I reframe my thoughts 💭… We’re all stuck at home (for the most part.) My hair is greasy and honestly – I’m shocked 😱 that this is a status update shared by so many others – turns out I’m not the only one feeling the stress. This global pandemic is a hardship for us all. In the old days I would say, “I look in the mirror and…” but nowadays I typically see my reflection in my phone 📱 or tablet as I video chat with the rest of the quarantined world 🌎 We have come to rely on technology not just for communication but also as a link to bridge the gap in education, medical and mental health visits, work, and family life.

We joke, but truthfully we can all relate to letting ourselves go because we’re all at least a little depressed… It seems we wash 🧼 for appearances sake much more often than for our health and hygiene.

It’s so much easier to be motivated by the people around us and so much harder to find the internal intrinsic motivation we all WISH we had. I contemplate 🤔 just how this applies to everything I’m trying to accomplish. As a special needs mom, I can’t force motivation on my son anymore successfully than I can push myself to actually do all that I want to achieve.

Stephen look at the lobster! 🦞
He touched the lobster! So glad to get his attention!

So much of what we want to change in life is the very essence of human nature. We need to embrace our humanity and accept that which we can’t change. We will not cure the entire world of disease. Likewise we won’t make an autistic person fit our stereotypical ideals. Instead we need to focus on what we can change. It’s the small steps that we take everyday that will change our eternal destination. Improving upon our habits and reshaping our ideals.

Does he realize that we’re going to eat this?
Curiosity- motivation to enjoy 😊 the world around him!

Let’s not expect our differences to outweigh our similarities. We all want to be motivated by the people, places, and things we love ❤️ most in life. No one wants to be motivated by a pushy boss or a nagging spouse. It’s our enjoyment of the simple things in life that we take for granted – that make the world go ’round. It’s being able to sit outside on a sunny ☀️ day and relax on my porch swing, sipping a cup of coffee ☕️ and enjoying the fresh air. Now that’s motivation enough.

The beautiful colors of spring flowers 🌸

I’ve found the time to enjoy some gardening. As I was surfing the internet and reading articles about gardening, I came across a blog. I was struck by a statement that rung true. While the times are uncertain, the inevitable arrival of spring (in the northern hemisphere) is one thing we can count on. The seasons will change and the sun will continue to rise again…

something I always look forward to…

As a caregiver, special needs and epilepsy make me take a step back and realize that all of these little things can never be taken for granted. The looming fear of illness and setbacks is always on the horizon. We don’t have the luxury of forgetting what COULD HAPPEN. Instead we rely on the FAITH TO FACE OUR FEARS, the undying HOPE that WE WILL get through this, and the love 💗 to make it actually happen. Dinner 🍽 at home with our family isn’t such a bad idea – It’s not a hardship at all!

Maybe we all need to pay more attention to our health and well-being and less attention to the vanity and comfort we have come to take for granted in our modern world…

This is not the end, and this will not be the last global pandemic. In the future perhaps we will be better prepared and have more realistic expectations. Ultimately this will be a lesson in perseverance and it will shape the world as we know it into THE BLESSING THAT LIFE TRULY IS!

beautiful purple spring flower bends gently with the home improvement center parking lot blurred in the background
bring the beauty of imperfection into focus…

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Always About The Child

Awesome post from a fellow blogger! These are the same feelings that influenced my earlier post (Autism and the Hurtful Misuse/Abuse of Labels) For parents it’s always about the child! Teachers and professionals please keep this ever-present in your mind!

Portia Dawson "My Son, His Voice, Our Journey"

AlwaysAboutTheChildPic

A month ago, my husband and I requested a school autism assessment to be done on our son, Callie. It’s been awhile, and since Callie is going to high school next year, we wanted to see where he is now, especially in the areas of Reading, Math and English. This is a new school, new district and new year — why not enter in high school with updated results? The diagnostician organizes, carries out and supervises the testing. He or she is the one who analyzes and evaluates the learning difficulty of a student and recommends ways to help and support that child. Although this being true, the definition and this district’s current diagnostician should not be in the same sentence. She is definitely not a favorite and I’m pretty sure I’m not her first pick for parent of the year. Callie’s transition into the district was nothing short of…

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How To Motivate Me (part 2) Progress Not Perfection

It’s always easy to get motivated when I see progress. Cleaning the house while the kids are still growing – is like shoveling the walk while it’s still snowing…

Continue reading How To Motivate Me (part 2) Progress Not Perfection

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

One Word Photo Challenge: Red (Apple Picking with Great-Grandma)

One of our favorite family activities is apple picking at the local orchards. This photo reminds me of a time that was particularly special. It was one of our last family outings with Great-Grandma. She’s no longer with us and we miss her so much – her light-hearted humor, her stories, and her princess personality. She was always the princess – even in old age.

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My grandma had Alzheimer’s. It seemed funny to me that even when she could no longer remember that my father was not my brother and her daughter was not her mother, she still remembered little Stephen had Autism and couldn’t talk. Stephen and Great-Grandma had a special silent connection that was beyond words! We love and miss you Grandma ❤

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This post is in response to: One Word Photo Challenge: Red | Jennifer Nichole Wells.

For more weekly photo challenges click here: One Word Photo Challenge | Jennifer Nichole Wells.

Continue reading One Word Photo Challenge: Red (Apple Picking with Great-Grandma)

Fairy Godmother Syndrome (doing for others what they can do for themselves)

I’ve been very busy this past week and I haven’t had much time for the things I enjoy and want to do most. The Reason? Well, it could be Fairy Godmother Syndrome. Is that a real syndrome you ask? It sure is!

Continue reading Fairy Godmother Syndrome (doing for others what they can do for themselves)

A New Year, Complete with New Challenges and New Adventures #whyIsign

 

 

What will this year bring? More challenges with an under staffed school district? More budget cuts for special education? OR by some miracle, PROGRESS? I’m hoping (and praying) for the latter.

Our son, (who is legally deaf-blind) started the school year without his 1:1 paraprofessional. As parents, we had heard the news that the district had laid off ALL of the union paras (and almost the entire support staff for special education.) We talked about it and we decided worst case scenario we get to school and our son has no aid, then we bring him back home with us and he doesn’t go to school… That would be where we, as parents draw the line.

Our son is 7 years old. He is completely non-verbal.

Like many parents who first receive an autism diagnosis, we didn’t know what to do next. Piece by piece we discovered our son’s disability, like putting together a puzzle of neurological developmental delays.

By age 2 our teacher of the visually impaired from the Board of Education and Services for the Blind had begun to suspect a hearing loss. After a BAER (brainstem auditory evoked response test), follow-up tests with the ear nose and throat doctor, and repeated visits to the audiology department at the children’s hospital, the audiologist diagnosed Stephen with unilateral moderately severe hearing loss (legally deaf on one side)  The audiologist told us that our son had permanent deafness that could not be improved with hearing aids. We have been using ASL with him ever since. #whyIsign #askmewhyisign

Just a year before the hearing impairment diagnosis, the eye doctor told us Stephen was legally blind. Stephen’s eyes had drifted apart and there were obvious signs of problems with his vision. Stephen has  Cortical Vision Impairment. CVI is a neurological vision problem.Our teacher for the visually impaired informed us that combined vision and hearing loss made our son legally deaf-blind.

Continue reading A New Year, Complete with New Challenges and New Adventures #whyIsign

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.

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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.

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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.

PPT meeting prayer for parents

With PPT season underway, I thought I’d share this updated post 🌷😊

Love Support Educate Advocate Accept

May my child’s love of learning grow.
May his teachers always know –
How to reach him,
How to teach him,
the way he learns best.

May I get a good night’s rest,
give me strength to do my best,
stay calm and strong –

To help him along,
to future education, employment and independent living…

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A Mother’s Love

What a beautiful story, I just had to share ❤

A Mother’s Love.

image

Image: Rose Watercolor – by Liana Seneca
Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.

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

“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.

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