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.

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

It Is Well With My Soul.

Over the past year I’ve witnessed the demise of many leaders; often pinnacles of faith who have fallen from grace, men and women who most assuredly began their careers with the noblest of intentions. Individuals who, through the passage of time, became enamored with self and blinded by fame & fortune; who lost perspective on their place within humanity because of a choice to turn from that still small voice.

I believe we each have the innate potential to fall far from grace; to perceive ourselves as better than we ought to. I know I do. Under different circumstances I could really embrace how special I think I am, hold on tightly to the perception that I’ve gotten this life thing figured out real good, lean into pride and her enticing offers & allow her to nibble away at my soul as she has with others who have climbed the ladder of success.

I think about all of this as I prepare to release a book and a documentary into the world.

Two creations that could potentially cast a pretty bright light on my life.

Perhaps.

I’m a first born, “me do it” Enneagram one who thrives on accomplishments and making a difference & these attributes are typically celebrated by society with lots of accolades and praise, & yes, this recognition is nice. I am human. It’s nice to be acknowledged for your achievements & even nicer still to have people perceive you as a good person; a person making positive strides in the steps of humanity; a respectful person with character. Of course it’s nice.

I’ve worked diligently & finished projects which might push me a little bit out of the shadows of anonymity & possibly into a world for which I am unprepared & yet –

I will continue to rise every morning
And diaper my 16 year old son
(which is as humility building as it gets some days)
And help him get dressed
And pour his juice into a sippy cup
And put socks upon his feet
And lace up his sneakers
And assist him to the car
And gently close the door but not until he says in his sweet sing song way –
“Bye! Have a good day!”
And I turn and walk away
With a smile on my face.
This is our routine
Me and my Luke
Every single day.

These monotonous actions serve as a reminder as they did with the apostle Paul – a prickly thorn that breathes humility into my swelling soul & deflates any pride that may try to sneak in; crushing it in an instant as my boy demands yet another round of –

“Paddy cake, paddy cake, bakers man, bake me a cake as fast as you can.”

And as his smile reaches for the stars, I lean into the understanding that he and I are created in the image of our Maker, one not better than the other, simply different with unique purposes & gifts, & the only attribute that makes us great is dutifully reacting in joyful obedience to the hard & holy tasks we’ve been called to accomplish.

Each staying faithful to the race we must run.

This uncomfortable road, this thorn of special needs & autism, this aching joy which serves as a gift – a gift that calls me to daily lay down my life & continuously keeps my head from ballooning & serves as a constant jab reminding me of who I am and who I am not by stripping away any pretenses. This gift which prepares a table before me in the presence of fame & fortune & pride; where Luke & I dine with the Shepherd feasting on humility & special needs & gulping down goblets of grace.

It is well with my soul.
It is well with Luke’s soul.
And that is enough.

Just keep livin