STRESS REDUCTION WAS PART ONE OF THE SYNERGY
If I was another parent reading that subtitle I would have gotten stuck on the first two words and would already be saying, “Impossible. Not in my autism life. There is neither room nor time for stress reduction.” Believe me, I understand! I feel like I will go to my grave saying, “There are just not enough hours in the day.”
I am a nurse. Synergistic is a common word in the medical field. It is often used to describe how the effects of using two different drugs together can be more powerful than the sum of the two combined. That’s why synergy was the word that came to my mind to describe the events that Hannah and I identified as playing a role in Jess becoming more interested in interacting with us and less interested in isolating herself.
STRESS REDUCTION WAS NOT THE PURPOSE
When Hannah and I looked back, we identified four specific events that worked together to create a synergistic effect. The first one of those events was unplanned and was not done for the purpose of stress reduction. It was done because of lack of options. Nevertheless, a major decrease in stress ensued.
I need to define what our stressors were to best explain how our stress decreased.
“You are so strong. I don’t know how you do it!”
Do you pressure yourself to be the strong and tough parent which other people see in you? Constantly and forever? I did. I had to be the strong, tough parent all the time. This is my burden to bear. I felt that I had no option but to face it, accept it, deal with it, manage it. Constantly and forever.
When stress is chronic, constant and high, do you lose perspective on the severity of what you are experiencing? Do you begin to accept those high levels of stress as normal, or at least as an inevitable normal for your life?
Only now can I look back and for myself say, yes. I did lose perspective. As autism parents, what other options do we have? Not many. This is our life. Most of us eventually find acceptance, then we kick in to survival mode. Unfortunately, those things DO become our normal. Then we often DO feel obligated to live up to that super-human persona.
THE STRESS OF FINDING A CAREGIVER
After Jess graduated from high school, I experienced extreme levels of stress and fatigue – every single day – for 5 years straight. A two year investment in job training for Jess had fallen through just before graduation. (read about Jessica’s nursing home job HERE) I had no backup plan because I had believed with all my heart that things were going to work out. Suddenly, there was a vacuum. Nothing. No services, nowhere for her to go during the day.
Honestly, I can’t even begin to adequately explain what I went through trying to balance my job with caring for Jess. Even with lots of help from family there were some days I couldn’t find care for Jess. We had worked for years practicing some self-care skills and scenarios so that Jess could stay by herself some. Looking back, I can’t even believe that we tried it as long as we did. (read more HERE) Jessica’s sister was crucial to the plan. Each night, we laid out a preplanned outfit so Jess could dress herself each morning. Sister Hannah fed her breakfast and put a bowl of something in the microwave for Jess to heat up later for lunch. Hannah stayed with her until just before she left for high school. Jess would put herself down for a long nap after lunch, then Hannah came straight back home after her school day.
I LOVED MY JOB BUT IT WAS HIGH STRESS
- Registered Nurse
- 12 hour shifts
- Cardiac Unit
- Patients with multi-system failure
- Life and death situations every day
Some days when Jess was stressed she would call 10 or 12 times in a row. I did my best to talk her through whatever, but sometimes I had to text friends to call her and talk her through whatever was going on. Three days a week I left home at 5:45 am and returned home at 8:00 pm to feed and bathe Jess and organize everything possible for the next day. Total exhaustion. On days off, the best I could often manage was laying on my couch with my feet aching like they would never stop, and me trying to recover physically before the cycle started again. At least on those days I was home and Jess was not alone.
WE DID THIS BALANCING ACT FOR 5 YEARS
We waited on Jessica’s waiver to be approved and funded. I constantly searched for better options for both of us including changing jobs 3 times in the last year-and-a-half of those 5 years, all so that I could have a regular schedule, 8 hour shifts, and work closer to home.
During those same 5 years, I had major surgery and sister Hannah became suddenly and critically ill. She was hospitalized for a month, experienced respiratory failure, kidney failure, and was placed on dialysis. She required physical therapy to gain strength to walk again, then had chemo for 2 years.
We were in our last 6 months of those 5 years of extreme stress and fatigue by the time Jess got her waiver approved and funded. She got placement at a day facility. Then, unfortunately, things went from bad to worse. (read about our experiences HERE)
SPEAKING OF SYNERGY…
Jess having to stay home by herself caused us all great stress. Trying to make Jess fit into her new day facility caused us equal stress, but even more for Jess. Of course, when Jess is stressed it causes me reciprocal stress.
Speaking of synergistic effect… everything was so compounded by all the stress and fatigue of every single day that literally my job was getting harder by the day. No one at my work understood the seriousness and exhaustion I experienced in my home life on a daily basis. I needed a lighter, less serious load at work but that just wasn’t possible on my job.
Sister Hannah was reaching her stress limit too.
WE WERE ALL THREE FALLING APART
What came next was unplanned and quite unexpected. Even I didn’t see it coming until the week it happened. It was not done to relieve stress. It was a last resort and was utterly necessary.
Soon afterwards, Jess quit going to the day facility that had caused us nothing but stress and unhappiness from the first day she started. (read more HERE) I had some contract work to do from home and although it paid about only half of what I had been making at the hospital, I have never regretted my decision. It was the right decision for my family. Jessica and Hannah both needed me at home. Their stress was greatly reduced and they both became healthier. But wait…
What about me?
CONSEQUENCES OF CHRONIC EXTREME STRESS
I’m not just an autism mom. Not just a mother. I am a person, an individual, one who is also aging, and NOT invincible.
I needed to be home.
Let me say that again, I needed to be home. Not just for Jess, not just for Hannah, but also for me. I hit the wall too and no longer felt healthy. I felt a tiredness then that has still never gone away. The chronic extreme stress was making me sick and I didn’t even know it at the time.
THE STRESS REDUCTION WE NEEDED FOUND US
When Hannah and I did our retrospective analysis to identify the synergistic interactions that led to Jess being less prone to isolate herself in her room, this unexpected, unplanned, sudden decision to quit my nursing job was the first piece of the puzzle.
Staying home with Jess was the best stress reduction plan that could have ever happened for this autism family. For decades, I had been determined that something would work out for Jessica. When I felt cornered into quitting my job, at first I believed that we had failed because nothing had worked out.
Actually though, something did work out. It seems that this was it, just not the it that I had expected. Looking back now, it turns out that quitting my job to stay home with my girls was the stress reduction we all needed. Hannah and I decided this particular stress reduction is a major piece of the synergistic puzzle we are putting together. However, we both agreed that it was more than just the stress reduction that was helping to pull Jess out of her stim world full of music, CD’s and cards.
Stay tuned for Discovering Synergy Part 2: Medication Changes