Category: special needs

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

To My Son, I’m Sorry.

Posted on by Jessica Ronne

To my son with profound autism,

I’m sorry I didn’t try medication sooner.

I’m sorry that I was more concerned with side effects than possibilities.

I’m sorry you lived in an anxious mess of a mind for years because of my pride.

I’m sorry I assumed the worst and how it would affect you.

I’m sorry I hindered your abilities because of my inability to broaden my horizons.

I’m sorry I limited your communication when medication would have clarified your needs.

I’m sorry I restricted you from your siblings because the aggression, without meds, made you dangerous.

I’m sorry I sighed in resignation and helplessness over the thought of raising you forever when all you needed was a little help.

I’m sorry it took a global pandemic and a total shut down of the world as we knew it to set aside my pride & request something, anything, out of desperation.

I’m sorry for the years of progress I may have stolen from you because I was sure that medication would do more harm than good.

Son, I’m not suggesting that medication is always the answer or even your long term solution, but it has enabled your best life right here, right now & for that, I’m thankful.

From this day forward, I vow to be more open minded. I vow to continue learning & growing & expanding my ability to consider other possibilities & I vow to assume the best. I vow to never stop fighting for you.

I love you Lucas Aaron.

Mom ❤️

This was a difficult post to write & even more difficult to put out into the world, but I know there is a caregiver somewhere who needs to read these words. They need permission to look at options.

The Side Effects of Being a Caregiver – Insomnia.

Posted on by Jessica Ronne

Here’s the second post in a series about the numerous side effects of being a caregiver. I gave a short list of many of the side effects I’ve experienced in my journey in last week’s post where I highlighted a recent struggle with hair loss, and the ways I’ve combated this ridiculousness.

The next most common side effect I’ve experienced related to being a caregiver has been insomnia. Part of this is absolutely related to caring for 8 children, and part of it, I’m sure, has to do with this lovely stage of life I’m currently in called peri-menopause.

Now given, I am the most OCD sleeper on the planet, and I hate this facet of my personality. I am way too in my head and really struggle to sleep outside of my normal environment or routine.  I am extremely envious of people who can sleep anywhere and everywhere but this is not my reality.

A few things that I must do before going to bed.

First, good nights and hugs for the kids, read Annabelle a story, and give Luke his meds. Draw the room darkening shades and curtains. I require pitch black  in order to sleep. Then I do 15-20 minutes of restorative yoga, take a warm bath with Epsom salts (I like these)

and take one willow bark – a natural Advil alternative

 

 

 

and one  L-theanine which is good for relaxation and gut health.

 

 

After my bath, I take two of these magnesium supplements which I have found to be hands down the most helpful in my journey towards natural sleep preparation. In fact, I ran out of this particular brand for about two weeks, and I used another brand which I had on hand, and I kid you not, I did not sleep very well.  This brand is AMAZING.

 

I really, really try to avoid Advil or Benedryl because I know they’re not great for me or my liver.

And, at 9:30, it’s time for  yogi tea mixed with Reishi mushroom – both which have a calming effect on my racing mind and take approximately 30 minutes to kick in and then it’s lights out at 10:00 p.m.!

I’d say the tea and mushroom put me to sleep quickly and the triple calm magnesium keeps me asleep (for the most part) and last but not least, I rub tiger balm on my hips which have been aching since giving birth to my baby 5 years ago!  Get some here. 

 

 

That’s it. My extremely OCD sleep routine which is admittedly ridiculous, but I can’t function without sleep – especially as a caregiver to 8 children. Yes, I’ve tried Valerian and Melatonin. Both give me weird dreams. Maybe this routine will help someone else in need of a solid night of sleep.

Just keep livin!

 

 

(This post does contain affiliate links which I may receive compensation for).

The Side Effects of Being a Caregiver – Hair Loss

Posted on by Jessica Ronne

The majority of special needs caregivers I’ve met or talked to throughout the years have mentioned negative side effects related to being a caregiver. Some are mild such as headaches, irritable bowel syndrome, or weight fluctuations, and other symptoms are not so mild and can land a caregiver on the road to rehabilitation for months, if not years. This was the story for Vance Goforth, a caregiver I recently interviewed on my podcast Coffee with Caregivers. https://anchor.fm/jess-ronne/episodes/Jess–Vance-and-Kristy-Goforth-ejfd4t He suffered from a heart attack due to the stress associated with caring for his son Joshua who has profound special needs and autism.

Statistically, 30% of special needs caregivers admit that being a caregiver has worsened their health. 43% report experiencing high stress and 26% say that their health is fair to poor (compared to 15% of the general public) source – National Alliance for Caregiving.
I’ve personally experienced numerous side effects from being a caregiver – not only to Luke but to 7 other children as well. I don’t believe that every symptom is directly related to the stress of care giving, but I do believe that most can be attributed to the stress of life which involves caring for 8 children; including one with profound special needs which has resulted in a much more difficult reality over the past couple of years.

I’ve had IBS, weight loss, weight gain, panic attacks, brain fog, insomnia, cystic acne, a sty that wouldn’t go away for months, facial twitching, achy joints, candida overgrowth, leaky gut, eczema, wrinkles (lots!) mental health struggles, depression, racing heart, jitters, and the most recently, hair loss. Yep, for a few months during Covid my hair was falling out in chunks and leaving bald spots behind. Not good.

I believe it began when Luke ended up in ER in December 2019 due to a shunt malfunction. He finally returned to school mid February and then was released from school indefinitely in March due to a worldwide pandemic. He and his 7 siblings all released and now home 24/7. This was one of the most difficult times of my life – even more so on many levels than my late husband’s 3 year battle with cancer. It was around the end of April that I noticed the large chunks of hair falling out every time I brushed. Or took a shower. Or even simply shook my head, and I freaked out. I seriously thought, “This is it. I’m going bald.”

Of course I did what anyone would do and immediately headed to Google which confirmed my worst fears. Yes, high amounts of stress over a prolonged period of life can cause hair loss BUT – within 6-9 months of the stress being remedied the hair loss should diminish and growth should return. I gave myself about 6 months to total baldness because I had no idea how I was going to relieve my stress levels in my current reality.

However – I did start to research and put a plan in place.

My plan included:

A good pre–natal vitamin. Heck, this supplement gave me lush, beautiful locks when I was pregnant. Maybe it could help now too. Get yours 

 

 

Biotin Serum. I used this twice a week after I washed my hair (which I only did twice a week to maintain the natural oils that I desperately needed at this point). Buy now

 

Biotin vitamins. Took these daily. Purchase here

 

 

A new biotin, vitamin infused anti -thinning shampoo and conditioner. These are a bit pricey but a tiny bit goes a long ways.  I still have more than half remaining after a few months of usage. These are worth every penny if I do say so myself. Get yours. 

 

 

I started this plan in May, and by the beginning of September, my hair had greatly improved to the point where felt I could comfortably get a few highlights again – something I had been avoiding due to the hair loss. I no longer have chucks falling out, and in fact, the sparse areas on my head are beginning to grow back. All the hallelujahs.

Maybe this information can help someone else – caregiver or not. No one enjoys hair loss! Right?!

Just keep livin!

(This post does contain affiliate links)