No Longer a Thief, Pt 1: Special Needs Can’t Steal Love

by jphilo | Feb 11, 2014 | Different Dream, Encouragement, Spiritual Support

No Longer a Thief, Pt 1: Special Needs Can’t Steal Love

Guest blogger Amy Stout is an expert about special needs parenting, thanks to her daughter Kylie who experiences autism. But her expertise rose to a whole new level when her beloved grandma developed dementia. In this two-part series, Amy tells how special needs were not able to steal the love between her daughter and the little girl’s great-grandmother. Today, in Part 1, Amy introduces us to her delightful grandmother.

No Longer a Thief, Part 1

Share the best moments of your life with your children as often as you can.
Someday when your memory will fail they will be happy to share them with you.
-H.Tuller

One of my favorite memories of my grandma was also one of the hardest times in my family’s life. My father was about to lose his job in a very public way. Grandma traveled many hours (and by herself) to be with us on the day we would learn if he had a job or not. When the worst of all possible scenarios occurred, she was there to help us pick up the pieces and to console our aching hearts.

That entire weekend, she was stability and comfort for our family. She taught my sisters and me how to play the game SkipBo and we stayed up until the wee hours of the morning playing and laughing so hard that tears traced patterns on our faces. We thought it was so amazing and wonderful that someone Grandma’s age would stay up with us that late! For a few glorious moments we forgot the fear and ache that filled our hearts!

When we finally retired to get a few hours of sleep, we collapsed in gales of laughter when we realized that before going to bed, my daddy (who was emotionally exhausted from the events of the weekend but who had mustered up an extra ounce of fun) had rigged all of our bedroom doors (including Grandma’s) with bang snap fireworks. As we all closed our doors to embrace much needed slumber, the small fireworks went off! We were so shocked and surprised that my grandma, sister, and I had to make great effort to not mess our bloomers (but our laughter surely woke up the house!)

Those were the best of times with my grandma and it was a very meaningful time for our family.

As the oldest of the grandchildren, I was blessed to have many wonderful years of memories with my grandma—memories that would sustain the aching of my heart when I could no longer wrap her in a warm embrace.

It was a cavernous loss we all were experiencing, she was right in front of us, yet she was not. She was lost in the recesses of her mind, her memories all jumbled, faces and names all confused.

My grandma (or Mamaw as many of us called her) had transformed into a tiny replica of herself, however even on the days when she was trapped deep within the fog of dementia, the best parts of Grandma were still there.

She may not have known any of our names and she mistook her son or sons-in-law for her precious husband whom she mourned terribly, but she was a sweet, happy lady always bringing smiles to the staff and fellow residents.

Grandma would tell anyone who visited that “Daddy”, her late husband who had been an avid outdoorsman, was out at the fishing hole. There was just something warm and consoling about the idea that he would be coming home soon and we allowed her to live in that repeated fantasy that seemed to keep her so calm and comforted.

I wanted desperately for my preschool daughter to know my grandma (her great-grandma). The tricky part was that my daughter experiences autism, and Grandma experienced a diagnosis similar to Alzheimer’s.* I just wasn’t sure how we could possibly build a relationship with the challenges that would surely present themselves with the marriage of those two diagnoses. How would I possibly bridge the gap between loved one and stranger, a 70+ year-old and a 5-year-old, and a person experiencing memory loss/ confusion and a person experiencing autism?

Can You Identify with Amy’s Story?

Have you experienced a similar situation between your child with special needs and an elderly loved one? Please tell us about your special people in the comment box.

No Longer a Thief, Part 2

*Grandma’s actual diagnosis was multi-infarct dementia. The primary difference between Alzheimer’s and multi-infarct dementia is that those diagnosed with Alzheimer’s have a gradual decline in cognitive and functional abilities. They and their loved ones know it is coming and have time to prepare. My grandma’s condition occurred quite suddenly after a series of strokes. She and our family did not have those precious moments in time to prepare mentally and emotionally or to say our goodbyes while she was still mentally and emotionally with us; it was thrust upon us all quite suddenly. Her sudden transition from capable matriarch to childlike patient was quite devastating and caused a grief that was difficult to reconcile. But then… this story came to be and God gifted my grandma and my daughter with a precious and rare gem of an experience in the midst of tragedy.

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Amy Stout is a wife, mother, and free-lance writer. You can visit her website at His Treasured Princess.

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Tantrums: A Special Needs Parenting Reality

Tantrums are a reality for those parenting kids with special needs such as autism, sensory sensitivity, behavioral issues, and mental health conditions. Guest blogger Stephanie Ballard is all too familiar with tantrums and the responses of onlookers. Her poem about dealing with her son’s tantrums may resonate with you, too. She begins with the introduction below.

I have seen your eyes.

When I am at the mall trying to pull my autistic son off of the play structure and he is kicking and screaming.
When I am in the grocery store and he has his hands over his eyes because the lights are too bright for him.
When he has licked your child on the playground despite the fact that I keep telling him, we do not lick people.
When the noises at the supermarket have sent him into a screaming rage in a matter of seconds. (I never know what might cause him to have a meltdown-honestly)
When he is banging his head on the table repeatedly while we are waiting for the waitress to bring us our dinner.

Your eyes seem to say…
Discipline your child
Stop him from behaving this way
DO SOMETHING.

What you cannot see is that my child is autistic.
He sees the world from a perspective that even I have yet to fully comprehend.

Sometimes when I try to hug him, he says that my touch burns
Sometimes he repeats the same phrases over and over again
Sometimes he rocks his head back and forth and flaps his arms (It’s called stimming)
Sometimes he says noises and lights are just too much for him-and he wants to hide somewhere safe.
Sometimes he looks me right in the eye-and says I love you. It is a rare gift-and it gives me hope for the future.

I have seen your eyes.

Tantrum

And all eyes rest upon you
As his squeals reverberate
And you struggle just to calm him
In his frenzied- angry state.
And he tells you that he hates you
And his fists fly in the air
And you know that those around you
Just cannot help but stare.

It’s hard to say what brought this on
A smell, a noise, a touch
For in his tiny body
This world seems too much.
These same hands that once rocked him
Now hold his kicking feet
And you wonder what has happened
To that baby once so sweet.

Then he stops twisting beneath you
And looks up into your face
And he says, “I’m sorry mommy.”
And you find that peaceful place.
The silent place inside you
That knows he doesn’t mean it.
A look passes between you both
Though no one else has seen it.

You help him up onto his feet
And grasp his tiny hand
And you know that those around you,
Just cannot understand.
You hear the words… “A spoiled brat”
From somewhere far behind
Oh why can’t people ever learn?
It’s better to be kind.

You hear his soft apology
“Sometimes I just get mad
And then I just can’t help myself
Mom, why am I so bad?”
And as two warm and tiny arms
Wrap tight around your neck.

You collapse in the grace of the moment
A broken and beautiful wreck
And it becomes apparent
In quiet introspection
God loves us in a similar way
Despite our imperfection.
At times we struggle just the same
In anger and defiance
Afraid of what we do not know
Avoiding all compliance.

You look down at your weeping son.
His tears have stained his cheek.
You realize then, that in your strength
You will always be weak.
All eyes follow you toward the doorway
As you smile at each passing face
And you hope that those around you
Have seen a glimpse of grace.

Comments?

Once again, Stephanie’s words go straight to the heart. Once again, the poem should have come with a tissue warning. So once your eyes are dry, leave a comment if you like.

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Stephanie Ballard is the mother of two sons, her youngest son, Braeden, was born with Kabuki Syndrome and congenital heart defects. Her oldest son, Colin is in the military. She enjoys writing poetry and life lessons about her journey in life.