PPT meeting prayer for parents

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…
Continue reading PPT meeting prayer for parents

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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

How NOT to Raise a Child with a Disability

Such a heart-breaking story, I am just speechless…

Raising 5 Kids With Disabilities and Remaining Sane Blog

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When your child is a toddler, focus on all the things he can’t do. He’s not walking as soon as other children. He’s not talking as good as other children. It is embarrassing to take him out in public because everyone comments on his looks. Blame your spouse for his disability. Or, equally worse, blame God. Whey has He forsaken you? Why has He saddled you with this tremendous burden? Spend your child’s infant and toddler years lamenting the sadness, disappointment and loss.

As your child gets older and goes to school, always blame the teacher or the principal if he can’t do something. After all, it MUST be their fault. They are discriminating against your child if they try to make him behave or actually complete his school project. He has a disability! Doesn’t that come with the right not to have to do homework or obey the class…

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

Monday Madness – Sleep Deprivation

Here it is, Monday again. It’s 2:30 and I have less than an hour until I pick up my son from school and I haven’t got around to the to-do-list I had ready for today! Typical Monday Madness. The day goes by too quickly and I don’t get nearly as much accomplished as I would have hoped.

to do list

Monday was never my favorite day of the week. In fact there’s only one day of the week I like less than Monday and that’s Wednesday Hump Day. As a child, I had a full-time job in addition to school. (Yes, I said child. I started working full-time around the age of 8.) I had such an intense dread of Mondays that I couldn’t quite enjoy Sundays because I knew my time to relax was almost over. Like a sleepless night, dreading the first rays of sunlight that slip through the curtains disturbing the restful cloak of darkness.

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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.

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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…