She Is Not a Duck, Part 6

A Mother’s Journey into the world of Mental Health and Spectrum Disorder Challenges

She walks like a duck, talks like a duck, but she is not a duck.

Chapter 5 The Tide Shifts

Today, when I ask my daughter about an incident in her 5th grade school year when she was 10 and 11 years old, she gets a blank stare and shakes her head. She only remembers one thing. Her response is always the same. “I have no memories at all, of anything really, because I was sick. All I remember is that I was so, so, sick.”

And, she was.

She didn’t miss many school days, though. She loved the structure and the socialization offered.

Down the road, we would learn that a restricted, structured, close environment was one in which she would thrive.

But we weren’t there yet.

Other than missing classes during her hospitalization and a few random days, she craved her routine. Her comfort zone was in having consistency. These were indicators of future diagnoses of which we had not yet been introduced.

The trauma and the introduction of various medicines made any recall attempts of her 5th grade school year, cloudy.

Her prescriptions had a slight change. The Risperidone was not administered by the inpatient doctor with a plan of being a long-term use simply based on her age. They all determined that she was too young to have a definitive diagnosis such as bipolar. Once she seemed to be solidly planted with stability, it was removed from the cocktail. She was holding her own.

A Welcomed Shift

Before intensive inpatient care, her erratic or explosive behaviors were about 80% of her day leaving 20% for positive interaction. With the medical intervention, she had flipped those numbers, and balance and receptiveness made up the majority of her behaviors and reactions.

The reminders that her conditions were still underlying would come randomly and if we relaxed too much.

We went to weekly psychiatric appointments, in the city, and tried to make it an adventure.

Meds in conjunction with counseling were necessary for Sarah’s care. One would not sustain without the other. We stuck to the routine, almost religiously. This was working well for her.

Her happiness meant everything to me. Our family unit was becoming more enjoyable.

Given her diagnosis, she qualified for an IEP, an Individualized Educational Plan, for 6th grade. States have requirements for students to receive public education supports. Lots of paperwork was generated with input from doctors, teachers, and parents to craft a winning combination. This is a daunting process in itself.

Nothing happens overnight.

The hurdles were immediate.

Sarah was bright, a strong reader, had incredible memorization skills, and presented a natural aptitude for math.

It was glaringly apparent that the State was more equipped for resource classes, for all levels of learning disabilities. Behavioral challenges weren’t as attractive, were problematic and unappealing in their disruptive presentations. The State was not equipped to address these challenges.

At all.

Mental Health accommodations were nowhere in the educational design.

What good is it to qualify for help that doesn’t exist?

Parents had to doggedly advocate for their children. I had chosen to rise to the challenge. Truth be told, some didn’t.

Our elementary school was Kindergarten to 6th grade and the process would have to start all over again for the junior high. Regardless, we joined together and communicated daily regarding behavioral changes or considerations that could be made at any given time.

Until then, I gave kudos to our small elementary school. In our little town, the setting and intimacy lent themselves to every teacher being familiar with most of the students and from any grade. Families were involved and nobody was simply a number. They pulled together, her teachers and the administration, in creative approaches to assist.

As a result, this fishbowl atmosphere was conducive to Sarah having a fulfilling final year in this school. The big event, the class production of “Annie” was a huge success with Sarah doing a stellar job as Mrs. Hannigan, the headmistress of the Orphanage.

She was a natural and portrayed her character with a comedic flair, prompted the others if lines were missed, and was euphoric being on stage.

She was on a natural high and the glow lasted.

Until it didn’t.

The Tide Shifts Again

Creeping in at first, and noticeable with just a few new ripples, the flow was changing.

The energy it took Sarah to quell her knee-jerk reactions in public would exhaust her. It also seemed to magnify her outbursts once she was in the privacy of our home.

Removing the Risperidone from her cocktail was understandable at the time, though scary. She had done relatively well without that added atypical antipsychotic drug.

And then, the explosive anger reappeared within months.

Only at home.

The Sarah most people saw was the ‘stage’ Sarah, winning the crowds with her warm smile and funny as well as fun-loving. They would see some stubbornness at most. This was an accurate assessment. In public.

Hormones of an adolescent girl, mingled with already mixed signals of various potential diagnoses, made for a tangled web.

Intuitively, I am on edge.

I don’t want to be on edge. I am so very tired of the edge.

Now that she has ‘performed’ so well for a couple of months in front of the general public, my go-to confidantes have decreased.

The better she can mimic how to act appropriately outside of our home, the less credible I became.

As the summer rolled in, so did the tide. Shifting back to the majority of her day being agitated and angered, rigidness and non-compliance took a stronghold of center stage, yet again.

“Let’s add Abilify, the Doctors said.”

• Thank you for letting me share the 6th installment of my series. We will continue to travel through the hallways of the psychiatric world, the school system, and our family dynamics. I look forward to sharing more and hope you will see that none of us are alone.