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The Lost Girls

 

 

 

 

 

 

 

I look in the mirror
And what do I see?
A different she
Than the one who is me

A tired she
A she that’s not free
An overwhelmed she
With what used to be

A she with deep bags
Beneath vacant eyes
Who hides in the bathroom
And breaks down and cries

A worn-out she
From the caregiving life
A she with more grays
From pain and from strife

A she void of makeup
And covered in grime
A ratty T-shirt
That she wears all the time

Dirty hair piled high
Upon a tired head
Moments like these
Make her wanna crawl in bed.

She lets out a sigh
And gathers her wits
Back to the grind
Which feels like the pits

She loves him dearly
The child she bore
She’s just plumb worn out
And achy and sore

Continuous care
For her disabled son
With no expiration
For when she’ll be done

Strenuous duties
Have taken a toll
And created a space
That feels like a hole

A hole where she
Used to reside
And now has gone missing
Where lost girls abide

In missing herself
She yearns for better days
And hopes change will occur
To transform caregiver ways

With determined resolve
She wipes tears away
And gathers her strength
To lift her voice & say

We caregivers need help!
And resources too!
Stop saying no!
To all that we do!

We must notice the shes
In each isolated space
Hiding the lost girls
But I see your face

I see you dear one
Because I am you
I see all you caregivers
And all that you do.

Stay strong and stay grounded
Take a moment for yourself
For what you accomplish
Surpasses all wealth

We are holy work doers
Across all the land
The Lord sees what we do
United we stand

We will speak our truth
At times with a rhyme
We will change our world
One she at a time.

Copyright @jessronne

Special Ed Solutions for School Closures.

A few weeks ago I was quoted in an article about how school closures have affected my family, especially in regards to my son with special needs who can not learn virtually. Read the article here.  This quote led to a feature on Fox News where I very quickly had to share my thoughts. Admittedly, I had so much more to say, but I did what I could with my 3 minute segment. Since airing, I’ve had many of you reach out, sharing the same frustrations & stories about how your special ed son or daughter isn’t receiving an education when schools shut down because they simply won’t learn virtually or can’t learn virtually. When our family went into lock down in March of 2020, it was literally hell for months. Luke went to school one day & then never returned & this disruption to his schedule caused constant screaming, aggression, regression and pacing back & forth as he repeatedly asked “go to school?”

My husband & I tallied & came to the conclusion that Luke had, at a minimum, 7 people working with him on a daily basis at school. Seven people with specific certifications & degrees such as physical therapy, speech therapy or behavioral specialist – all specialties we weren’t certified in & somehow, the two of us who had full time jobs & 7 other children were supposed to fulfill the roles of all these people it took to educate Luke in one day.

Needless to say, we didn’t. We did our best. We worked on his life skills. We practiced his flash cards. We went to the park & walked but there was absolutely no way we could adequately fulfill his IEP when at school it took a minimum of 7 people a day to work with him.

I’m not sure how exactly I became the face of this problem (or if I even want to be the face!) but here we are & I’ve had numerous people ask, “I get it Jess, it’s awful! But what’s the solution?” And, I’m just a mom. I’m not privy to school budgets or politics or employee recruitment practices, but I do have a few thoughts on the matter & maybe even potential solutions including the following:

1. Pull aids, teachers & subs from other schools & classrooms. My typical children are capable of learning virtually unlike my son with special needs who requires face to face opportunities. Not entirely ideal but a possible solution if we pulled teachers, aids & subs from these classrooms to help out in special Ed classrooms when there are shortages due to Covid or staffing issues.

2. Pay more! And way more for aids willing to work in Special Ed. Offer bonus money to subs who work a certain number of days. My 16 year old daughter receives a $500 bonus after she works for 6 months in retail. Every business is offering this! Why aren’t schools? And, aids who work in Special Ed classrooms must be compensated accordingly & this is not minimum wage. This job requires so much more than that of a typical classroom & often times includes specialized training. I can’t find respite workers for less than $15 an hour & aids (or subs) who work in these classrooms should also be paid at least this amount.

3. Let parents decide regarding contact tracing & virtual. Some children are medically fragile or immune compromised, and if this was the case for my child, I would absolutely be more concerned during cold, flu and Covid season, but he’s not and there is an extremely low chance that he would ever have complications or die from the flu or Covid; however, there is a very high chance that he (and we) might have a mental breakdown & financial hardships if he doesn’t attend in person schooling because we can’t work.  Mental health trumps physical health in our situation, but this could very easily be different for another family. Choice is a good thing. Let parents choose.

4. Offer a stipend to homeschool. Some states offer this & it’s not much but at least it’s a viable choice. When we lived in Tennessee, we were offered around $900 a month if we chose to homeschool Luke. This isn’t much but at least it gives parents a little bit of autonomy over the situation, & if the parent is expected to set aside their whole life to educate their son or daughter for an extended amount of time, they should be compensated. Or, perhaps a group of parents could pool their money together and start a special Ed co-op. Normally, we have numerous options when it comes to schooling for our typical children, and we should have a few for our special ed students as well.

Again, I don’t claim to understand the inner workings of each and every school district but these might be viable & attainable solutions for a problem that doesn’t seem to be going away any time soon. Any other thoughts?

Just keep livin.

The Caregiver

 

 

 

 

 

 

 

The spider glides across the window pane
The beetle traverses the cold tile
The moth returns to the light
And the mama releases a sigh,
Weary after consoling her child
Again.

She exhales the attempts
To extinguish the flames
That rage within
The neurotic chaos soothed
By anti-psychotic meds
Or Barney’s songs
Or maybe there is no solution
On this particular day.

No solution for what
The blast stole from him
The stroke that occurred
Many, many years ago
And pained those
Who love him.

And the screams rattle the walls
And the windows
And the beetle cowers behind the urn
Which illuminates a translucent prism
Of relaxed bodies
that lean into the silky softness
or slowly cascade from the glow
and drift to lie
upon the patio.

She stretches her tired limbs
The mama who loved him from the start
Her terminal boy who defied every odd
And lived
But in living
Her dreams died a little bit
And she became frantic –
Fighting against the web
And against the light that beckoned
Desperate for an escape
Desperate to find a crack in the floor
Or maybe in the windowpane
Desperate to avoid the patio graveyard
And reject the silken suffocation
And she retreated
to the mat
upon the floor
again.

The spider, the beetle, the moth –
Her friends in isolation
They wait
All three – they wait
And ponder
And shrug.

They consider their Job
Lying still and silent before them
Prostrate upon the cold tile
Seeking the light within
and not the one flickering
beyond the window pane.

The spider eyes her suspiciously
The beetle hurries past her motionless body
The moth flaps mightily
Her friends in quiet contemplation
Living a life not chosen
But yet, it was.
In childlike surrender
The light glimmers within
and beyond.

The spider, the beetle, the moth
They surround her
And peer intently into her dismal eyes
Her hallowed gaze
And they wait
All four, they wait
For escape.

An eerie silence fills the room
Except for the occasional screams
From the child
below.
She sighs,
defeated,
Again.

And then –

A sound –

She untangles her weary body
Her foot swipes the web
as she rises from the sunken mat
and scuttles to the door
flinging it wide
in welcome relief
The light rushes in
And becomes one with the day
Redemption
has arrived!

Hallelujah and Amen!

The fresh air
Ebbs and flows
Like a steady tango
And brings hope
That brushes away
The spider, the beetle,
and the moth.

A burden lifted
Her soul is light and free
A meal, a drink, a gift
Extended
Life-giving sustenance
for the weary and famished.

She exhales
Slow and steady
Not caught
Nor trapped
By light nor silk nor walls
There is grace
Through giving hands
And sacrifice.

She is renewed.
She is seen.
Again.

#seemetoo

This is not a gift.

This is not a gift
The thrashing, slashing
high pitched screams
The inability
To regulate
The nightmarish dreams

This is not a gift
The sensory seeking
And constant smears
The messes
And elopement
Amidst many jeers

This is not a gift
The anxiety to a hilt
The flapping hands
And banging head
The thoughts laced constantly
With guilt

This is not a gift
The non verbal guessing game
A game we play
Because we must
But frustrating
all the same.

This is not a gift
The hours making calls
The sleepless nights
And haunting tales
The writing
on the walls

This is not a gift
Fighting tooth & nail
For every damn
experience
That might just help
My kid prevail

This is not a gift
The dollars always spent
on lifesaving meds
and tall safety beds
Which often deter
Paying rent
This is not a gift
Caregiver fight or flight
The isolation
And heart palpitations
The harrowing screams
Through the night.

This is not a gift
Constant PTSD
The tears
And desperate pleas
For anyone
To please see me.

This is not a gift
This version of the ‘bow
The red & yellow
Black & blue
The constant stress
And woe.

This part is not a gift
But other parts
They sure are great
Like patience learned
& kindness too
Towards those who are different
Than me & than you.

And the breakthrough moments
That make us smile
Those moments
achieved
When we walk
The extra mile.

And when he cups my face
And softly sings to me
And waves his head
So gently
To the sweet, sweet
Melody

The wins
That come with pain
They make it more worthwhile
But truth be told
And tell the truth
I will not spread beguile

This life is hard
For me & him
The loses piled high
We hold on tight
To faith & hope
Until the day we die.

Hope that those
Who follow us
Will learn & love
And prosper
Because we used
our time to teach
And never lost
Our luster

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Sunlight Burning at Midnight

Sunlight Burning at Midnight