Tag Archives: inspiration

A Mother’s Love

What a beautiful story, I just had to share ❤

A Mother’s Love.

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Image: Rose Watercolor – by Liana Seneca
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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.

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Parenthood

I’m a huge fan of the show…

It’s been soooo long since I’ve written on this blog that I’m not sure anyone will notice…

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It’s been too long, WAY TOO LONG…

Parenthood is a demanding job, my hubby fell asleep with our 8-year-old in the middle of our queen size bed. He weighs 60 something pounds now, so maneuvering him out of my bed without waking him is something of a feat. I pull him by his feet to the bottom of my bed. Then carefully lift him over both forearms, bending my knees as I lift so not to break my back. (As if I could really carry a 60-something pound boy like a baby, in my arms, from one room to another.) Then I put his feet down on my bed and flop him over my shoulder while he and I both pretended he’s still sleeping. Then I stumble over the beanbag in the middle of the living room floor and barely make it to drop him on his bed with just a little bounce. I tuck him in and give him a kiss on the forehead.

 

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So much has happened since I last wrote that I don’t even know where to begin. So I’ll start with my latest muse.
I was watching the last two episodes of Parenthood on DVR. I know my hubby will be mad that I watched them without him, so I’ll do my best to keep a poker face, and pretend I haven’t already seen them. I really won’t mind watching them again – 2 totally heart-warming, touching episodes. And the spoiler at the end is just breaking my heart. Why do they have to do that with the spoilers. If my hubby was awake he would have insisted that we didn’t watch the “next week on…”

As I watch the show, I’m reminded of just how valuable time is, especially time with those we love. Never take for granted the moments that make up a happy life. Moments of joy and sorrow, fear and hope, love and loss.

The holidays have come and gone with all the typical hustle and bustle of the season. Barely a moment to stop and catch my breath. I sit down to write and I’m pulled away and distracted with daily responsibilities. It’s easy to think of time to relax as a luxury, one I often feel lacking. I sometimes forget, as many busy parents do, that time to unwind is an actual necessity in life.

Always the farmer’s daughter, I find myself ever aware of the cycles of life and constantly in awe of the beauty therein. So I take just a moment to reflect and draw inspiration from the change of seasons. The cold, wet winter days remind me of the challenges that are behind us and of those that lie ahead. Winter is a time of rebirth. A time of quiet, peace, patience, and perseverance – waiting for the spring thaw, for the seed to sprout.

I’ve been so busy since I wrote last. I’ve worked a full-time job special needs parenting, a second full-time job as a volunteer education and legal advocate, and a part-time job self-employed in property management (imagine that a job I might actually get paid for 😉 ) Struggling to make ends meet and to fulfill ALL of my responsibilities to the best of my ability.

I’m happy to report our recent success in educational advocacy. Stephen started at his new school 6 weeks ago. He is now in a “language learning environment” where he will learn to communicate, improve his listening skills, and make the most of his own unique strengths and abilities. He seems happy and appropriately challenged at his new school.

I’m sure other special needs parents out there will want to know the specifics of how we got to this point, but in the typical legal mumbo jumbo fashion there is a non-disclosure agreement with the city. Suffice it to say that knowledge is the key that opens many doors. My best advice to parents is know your rights, know your child’s rights, consider your options, tread carefully, and just put one foot in front of the other and carry on, never give up! A long journey begins with the first step! Take it one day at a time, one step at a time, and persistence pays off.

The first few weeks Stephen was downright giddy with excitement about school. He’s slightly less enthusiastic about returning to school after the holidays, a pleasant indicator that he is aware it’s back to work and back to the grindstone we go. I’m at ease knowing that he is communicating in his unique way that he’s being asked to work hard and learn new things at school.

I’m reminded of seasons past, first with the Birth to Three program – physical therapy, aquatic therapy, feeding therapy, and occupational therapy. Each time he progressed through seasons of dormancy and seasons of growth. The seasons of rest being the times he looked forward to his therapies, and the seasons of growth being the times he would drag his feet just knowing that he’d be asked to do some hard work, and the harvest season – a time of success, accomplishment, and fulfillment. Seasons that inspire and challenge us with anticipation of what lies ahead. regression, disappointment, and frustration mere stumbling blocks turned into stepping-stones.

So it’s off to school he goes, and I’m a little uneasy starting again, anew. I miss the old familiarity of professionals we came to know and love like extended family (aunts and uncles, cousins and family friends.) I’m wondering how they are and what new things this season brings… I’m missing the text messages, and the ease of communication with someone you know and trust, the friendly smiles, and familiar nods. I know one day we’ll be there again – with short sentences, and unspoken words…

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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

One Word Photo Challenge: Brown (The End of the Road)

I love all things interesting and unusual. This tree caught my eye on a summer camping trip to Burlingame State Park. I’ve never seen a tree grow over a sign like this before. What a peaceful place on the campground. Nature envelops every trace of humanity. Even the sign bows to the beauty of creation.

State Property Ends
State Property Ends

and another sight that caught my eye…

Continue reading One Word Photo Challenge: Brown (The End of the Road)

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

One Word Photo Challenge: Purple (Winter Sunset)

This week I’m posting a photo collage in response to: One Word Photo Challenge: Purple | Jennifer Nichole Wells  The first thing that came to mind when I read this week’s photo challenge wasn’t a picture I had taken but rather an image in my mind…

Continue reading One Word Photo Challenge: Purple (Winter Sunset)