Tag Archives: dpchallenge

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

The Saga Continues…

Life is always a long story (or at least one would hope!)
No discontented ramblings here…

“The best laid plans of mice and men often go awry.”

Harvest_Mouse_(face)

Today I am both, mouse and man, as referred to in the poem.
My family’s plan to move is subject to constant revision.

Weekly Writing Challenge: Fifty | The Daily Post

Continue reading The Saga Continues…

A Time to Every Purpose

pinzon-velvet-plush-twin-blanket-navy-2This April we’re celebrating Autism Awareness Month! Will you Light It Up Blue with me? Will you take part in some random Autism Kindness Acts? Maybe a night off for some autism parents you know? (I know I’m not the only autism momma out there that doesn’t want to ask!) Right now I’m thinking of my nice, warm, cuddly, blue fleece blanket. I’m so tired.

3-piece-spa-blue-taupe-reversible-bedspread-quilt-set-queen-sizeI saw some pretty blue quilts and sheets advertised in the weekend paper. Let’s face it, my autistic 7-year-old doesn’t really want to go shopping with me. My hubby doesn’t either, for that matter. When we go out shopping, you never can predict who will have a meltdown first – my hubby or my son! I’m so grateful to live in a day and age when I can do some shopping on the internet. Nothing beats shopping in my pajamas! 🙂

If I could hop in a time machine, I think I’d fast forward to a day when my son is prepared for further education, employment, and independent living. I’d sigh with relief and a tear of joy would run down my cheek.

I’d fast forward to a day when parents of children with autism and special needs no longer need to fight for a “free and appropriate public school education.” A day when there are measures in place to enforce the Individuals with Disabilities in Education Act, for all children in need of special education. A day when enforcement of federal law is no longer the duty of overwhelmed parents. A day when exhausted parents can sleep soundly without worry because the community is standing together in support. “I have a dream…”

in the hospitalStephen had a life threatening seizure disorder in infancy, and cortical vision impairment (blindness) at 18 months old. By age 2, my son received his 3rd life changing diagnosis – AUTISM. There were still many life changing diagnoses to come, but this one was the hardest to accept. It came as confirmation that Stephen’s neurological condition was even more likely to cause intellectual and developmental disability. The cards were stacked against him, but we weren’t giving up. How could we give up?

light it up blue for autism awareness
Light it up blue!

My son’s first day of school was one of the longest days of my life. I was so worried, I had left him in the hands of strangers. He wasn’t walking, talking, or feeding himself. He was still eating baby food from jars and pediasure from baby bottles. I watched the clock until it was finally time to pick him up off the bus. It’s hard to imagine what it’s like to be the parent of a child with autism or special needs until you’ve walked a mile in our shoes, or carried your baby to and from the school bus on the first day of school!

school bus
Everyday Life on My Street

My son has improved so much over the years. Early intervention services are key for so many children like him. He started walking at just over 3 years old. He still wears leg braces and crawls up the stairs, but he no longer qualifies for physical therapy services. He still struggles with both gross and fine motor skills and mobility due to low muscle tone and neuro developmental delay. He started feeding himself at age 5, and progressed to solid food at age 7. He still wears a diaper out in public, over night, and in his regular education classes. He’s potty training at home and in his special education class room.

first day of preschool
First Day of Preschool

He still holds my hand for safety – on the street, on the sidewalk, in parking lots, and on the stairs. He still squeals with delight when we play peek-a-boo. He’s quite entertained with anything he can prompt you to say without speaking a word. He still thinks my silly songs, with words I make up to his favorite, familiar, childhood tunes are worthy of all the adoration that is given to the stars. He’s no more responsible for the noises he makes in church than he was on the day of his baptism.

baptism lit up blue

Don’t get me wrong, we set our expectations high and we encourage him to be on his best (and quietest) behavior. We know that he won’t learn social skills without practice. So forgive me if we don’t wait outside in the car, where neither of us can hear. Instead we teach our son to listen. We sign to him in ASL and remind him when it’s time to listen, time to sing, and time to go. You really don’t need to turn around while the preacher is preaching and ask me if there’s something wrong with my son. I’ll politely tell you he has autism.

Please don’t embarrass my mother with your disapproving looks. She hasn’t had the years of practice that I’ve had, learning to “turn the other cheek.” I won’t tell you what I’m thinking, or respond with an equal measure of disapproval. No need to apologize for asking (but you should be more capable of listening to the preacher and less distracted than the 7-year-old boy behind you.)

I have changed the theme of my blog to blue  in honor of autism awareness. I’ve added blue framed photos to my social networks.  I lit up my profile pictures blue.

Light It Up Blue - Neon Personality

Will you support the family of someone with autism at the store, at school, and in the community? Will you wear blue this month in honor of autism awareness? Will you light it up blue this April?

This post is in response to:
Weekly Writing Challenge: Time Machine | The Daily Post
Weekly Photo Challenge: Street Life | The Daily Post

You may also like:

picture of me and Stephen
Who I Am and Why I’m Here

Image Sources:
all portraits/images of people (in this post) are
by Liana Seneca ©2014, all rights reserved
pinzon-velvet-plush-twin-blanket-navy-2 – by ValerieRoberts
Spa Blue/Taupe Reversible Bedspread/Quilt Set King –
by ThompsonAlyssa
Creative Commons License
Love Support Educate Advocate Accept by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Reflections on Life, Laughter, and Love

Live Well,
Laugh Often,
Love Much

The sign hung in the kitchen of my parent’s bright and vibrant home for many months, before being replaced by my chic step-mom with an equally family oriented sentiment.

family is forever

My niece quoted it on a beautiful day at the beach last summer.

live well laugh often love much

I too love the quote and I’m equally inspired by it. Family is the beginning of every story and if we’re among the lucky ones, every story ends with family. When all is said and done, it’s what matters most.

They say, “there is no I in team” but there is both an I and am in FAMILY. Family is the place where we all belong – each of us as unique individuals and collectively all together.

No matter who we are or where we come from, we all draw on our own personal experiences.

Continue reading Reflections on Life, Laughter, and Love

Waiting for the Golden Years

This last month has been one of the most hectic times in my life. I keep waiting for things to settle down. I’ve had the stomach bug for 3 days now. I suppose it’s time to see a doctor, but all I really want to do is rest.

When will the golden years come? All my life I’ve heard people say it will get easier when you’re older. I’m not sure that it ever gets easier. I know my perspective has changed so much over the years. Things that were once the end of the world are now just speed bumps.

Wednesday afternoon we drove through a snow storm on our way home from moving our daughter and grandson out-of-state. I was looking forward to getting home and taking a few hours to rest before getting back to work.

Continue reading Waiting for the Golden Years

When “Normal” was Normal

Lately, I find myself trying to remember what normal was like. What exactly is normal anyway? I’m not sure I’ve ever really known “normal” but there was a time before I had a child with autism and special needs. It seems so long ago now, like a distant memory…

I recently restored old photos from a backup drive. I’m glad to have the old photos back within reach because I honestly can’t remember if everything was “normal” in the beginning. I had started to wonder if I had missed the signs of what was yet to come…  So I sit here looking at old photos and examining them for something I could have missed or something I’ve forgotten.

Stephen had the cord wrapped around his neck at birth. I don’t remember him being blue for long, but then I wondered…

I held him for a brief moment before they cut off the end of the cord...
I held him for a brief moment before they cut off the end of the cord…

Stephen was diagnosed with Infantile Spasms at 5 months old. I’ve heard that having the cord wrapped around the neck at birth is common in babies who have Infantile Spasms – especially when the exact cause is unknown.

I remember he cried right away when he was born. He started to get pink right away and they cleaned him up and next dad cut the cord...
I remember he cried right away when he was born; he started to get pink . They cleaned him up and then dad cut the cord…

 Infantile spasms is associated with a significant risk of mortality and morbidity. Riikonen has followed 214 infantile spasms patients for 20–35 years and has accumulated the best long-term follow-up studies of these patients. In her series, nearly one third of the patients died during the follow-up period, many in the first 3 years of life. Eight of the 24 patients who died by age 3 died of complications of therapy with ACTH…

I was induced at 9:00 am and Stephen was born by 6:00 pm. Here he is looking like a normal healthy newborn in his brother's arms.
I was induced at 9:00 am and Stephen was born by 6:00 pm. Here he is looking like a normal healthy newborn in his brother’s arms an hour later…

Without even realizing it we had a vision of what life would be like…

We could never have imagined what life had in store for us…

This was just the beginning of our story

Stephen is now 7 years old. His diagnosis includes: autism, epilepsy, GI disorders (gastrointestinal), hearing impairment, vision impairment, and neuro developmental delays. He is non-verbal and legally deaf-blind. He went through 6 years of weekly therapy for feeding difficulties, most likely caused by GI disorder. He is self-feeding and eating solid foods now. We’ve started potty training, and we’re finally making progress towards independence and self-help skills! 🙂

A Harvard Medical School analysis of electronic medical records suggests that some children with autism fall into one of three distinct subgroups based on common medical issues.

This post is in response to:Weekly Writing Challenge: Threes | The Daily Post
Continue reading When “Normal” was Normal