Author: Jessica Ronne

Special Ed Solutions for School Closures.

Posted on by Jessica Ronne

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

Posted on by Jessica Ronne

 

 

 

 

 

 

 

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

Luke’s Uncertain Future.

Posted on by Jessica Ronne

Yesterday I enjoyed a lovely conversation with a mama of a 20 year old total care daughter. As we chatted, I was quickly reminded that my Luke will be turning 17 this summer & as of yet, we don’t have a long term plan. Sure, I have aspirations & dreams but nothing cemented in stone.
So instead of being a sane individual & prepping for a move, or writing a book I’m under contract for, or launching a current book (or non-profit work or being present for my 8 children), I spent the day obsessively researching how to become a Medicaid provider & start a residential facility.

Of course I did.

I looked at vacant land, at huge pole barn kits that could be sectioned off into living quarters, duplexes, cheap commercial properties that my handy husband could renovate, & then I began to crunch numbers which only resulted in disappointing results. It’s a HEFTY price tag to have your loved one cared for 24/7 (try $20,000+ a month for ONE caregiver).
My point is this. As many of you prepare to launch your high school graduates off; full of anticipation & hope over a world of possibilities (& I’m doing this as well with my two oldest), there are those of us freaking out about the future of our unique kiddos.

In fact, I believe most of my grief with Luke has nothing to do with his diagnosis but much more to do with the uncertainty of his future & ours. If someone would say to me, “ At 22 years old he will move into this amazing residential facility where he will be well loved & cared for.” That would work! But no one says this to parents like me. We don’t hold our breath for admittance to college at 18 years old. We don’t hold our breath for admittance to anything!

No, we hold our breath that there will be an opening somewhere that provides peace to our souls before our child turns 40 or before we die. Whatever comes first.
We live for years in fear over what the future holds for us & for our children & me being me, I’m sick of the fear & in true Jessica fashion decided to take the bull by the horns & try to control the situation (which may or may not work – we shall see).

It is what it is.

But please, remember us.

In the middle of the big hoopla’s & parties & ceremonies to celebrate the typical ones, remember those of us who aren’t in a major celebratory mood or have much whoop de do going on because there aren’t any options for our grown kiddos.

And you know what, then do something for families like ours. As we show up to celebrate your kids, advocate for our children. Vote for change. Donate to the organizations making a difference in your community. Our societies are only as healthy as our caregivers and that includes caregivers of the typical & caregivers of those like Luke.

Just keep livin.

It Is Well With My Soul.

Posted on by Jessica Ronne

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