Part 2, Michelle Nickleberry, Autism Education and Training for Flight Crews and Law Enforcement

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Part 2:

Michelle, went on the say that Tori was always the one that got sick and still tends to be that way.  As with many parents, Michelle discovered the hard way that finding a pediatrician who strongly considers a mother’s observations and intuition is a key part of finding said pediatrician.

“Two PhD Psychologists, two MD Psychiatrists, an occupational therapist, and a speech therapist , six people observed her from 9:00 a.m. until 1:00 p.m.  I took a break and took her home.  I returned from the break with my mother and received a diagnosis of severe autism.  The panel told me that Tori would never get better.  They said she would only get worse and that we should be prepared for her to spend the rest of her life in our house.

Michelle snickered at the diagnosis initially,  “Autism… “Six people observing Tori for four hour…? Not only am I Tori’s mother, I have a Master’s Degree in counseling.  I had done the research on how autism may look.  Six people to tell me that… really?  Then, it hit me like a ton of bricks.”

According to the doctor, Tori would get worse… worse than not speaking, worse than barely crawling.  She took a moment to ask herself, Why are you crying when you knew what it would be? The moment didn’t help.  “Mom and I cried.  It was hard to drive home with Tori’s very poor prognosis.

“On top of all that, while my insurance paid for the diagnosis, it would not pay for the treatments related to autism.   My company self-funded our insurance coverage.  Under Federal Law and State Law, they chose to opt out of coverage for autism treatments.   A single mother at forty-five, money was already tight… with medical bills...  But, I just could not accept such a poor outcome for my daughter.”

Michelle saw that she needed to educate herself.  She looked into the standard practices of treatment for autism.  These were Applied Behavioral Analysis (ABA), occupation therapy, and physical therapy.  The pediatrician talked about drug therapies which she chose not to do.  That was the path she remained on for a while.

She started looking for alternatives to understand more of Tori’s conditions and behavior, especially her stims.  “Stims are self-stimulated repeated behaviors Tori uses to calm herself down. Her stims took the form of falling back and doing snow angels on about any surface.”

Despite being tight on money, Michelle went to her first Generation Rescue event, Autism One in Chicago in 2011.  “There, I learned about diet, essential oils, biomedical treatment, and the Son-Rise Program.   My head was spinning with so much information.”

Michelle started doing two things when she returned from the conference, using natural soap and lotions, and learning more about Son-Rise.  “I really noticed a difference when I used a friend’s homemade soap.  Tori spoke more words.  She started putting her sentences together.

“Son-Rise of the Autism Treatment Centers of America was created by Barry “Bears” Neil Kaufman and Samahria Lyte Kaufman.  Going there became a priority though I didn’t have the money.  Son-Rise gave me a scholarship to cover a part of the cost.

“I took a week off work and went to Sheffield, Massachusetts to attend the program.  It helped me to see inside Tori’s stims.  Son-Rise taught me to do what she does when it comes to acting out some behaviors.  It shows Tori that she is loved, that there is nothing wrong with her.  It taught me to see the world from her perspective and to see what she may be responding to.  When Lexi and I first started joining her in making snow angel movements, Tori would stop and look at us.  That was a good thing.  She would get up and move our legs in the way she wanted them to go. That was interaction.  Then, she would lie back down on the floor and do more snow angels with us.  Over time, she just stopped doing them altogether.  Son-Rise goes on to say that you should reflect a life in which your child will want to join.  So, Tori, Lexi, and I do some silly stuff in our house that generates hugs and kisses which wasn’t happening before.  These programs were so helpful to Tori’s improvements.  I speak out now.  If there is anything going on about autism, I try to be there to support it, share my experiences with what has worked or hasn’t worked for Tori?”

I asked Michelle, “Is that how you came to get involved in the air travel program and can you describe that to me?”

“That’s just one of my twelve jobs: modeling… handgun licenses and safety, acting…. On this one flight, we had a teenaged boy on the aircraft who sat by a female passenger.  He started rubbing her leg and her arm.  She became very upset and saw it as an assault.  I went to take a look.  I sat by him and saw his reaction, no eye-contact, no interaction.   I went to speak with the passenger to explain. She was slow to hear that puberty can be more problematic for kids with autism.  The crew calmed down.  The passenger calmed down.  A male passenger volunteered to sit next to him.  The police didn’t come.

“I heard about a program in El Paso with my airline’s job.  Kiddos with autism go through the full screening process.  They are issued luggage, check-in, go through security, pat down, board the aircraft and take a seat.  Parents need this type of support.  Flight crews need more training because autism diagnoses are projected to increase.  It’s called a spectrum for a reason; meaning that, flight crews with no orientation whatsoever are bound to create bad outcome for the child, other passengers, crews, and airlines, especially so with police departments.  And that’s already happened.  I want to help educate staff to identify and de-escalate these situations so that a child and others can continue with their lives as planned.”

Michelle Nickleberry, Autism Education and Training for Flight Crews and Law Enforcement

Michelle Nickleberry adopted her daughters, Tori and Lexi, as a single woman.   She works as a flight attendant with a major airline, provides concealed handgun training, and works as a grievance specialist with a union.  Her ambitions are to:

1. Expand airline passenger orientation programs for kids with autism in order to reduce the chances of behaviors that officials and passengers may not understand.
2. Develop awareness programs for airline staff and police forces both to reduce the risk of harming a child and to reduce escalations that may demand resources best used someplace else.   

Michelle’s Story, Part 1 of 2:

“When I married, it was a family decision for me to leave the Dallas Police Force.  I think about going back as a reserve police officer sometimes.  Life is different now.  Now, I am a single mother of two daughters, one on the autism spectrum.  I adopted twin daughters, my kiddos, after they came into my life as foster children at only eleven days old and born prematurely.”

Michelle oriented me to that difference in her life by sharing one particular police call:

“He threw us around like we were ragdolls,” recalled Michelle, her voice steady; like the brawl must have found its place in the context of her life.  “My partner and I didn’t know if we were going to make it.  The perpetrator was so strong… extremely strong.  He wasn’t trying to stop us.  He wasn’t trying to resist us.”  Driven by rage-induced mental health issues and the inadvertent intake of laced marijuana, “He attacked us.  He tried to take our firearms.  He hit us over the head.  This was a fight for us to go home. So, it was on.  We engaged him will all the strength and tactics coming from the only source it could, God’s gift of the will to survive.

“A security guard showed up.  He had a shotgun.  He went to lay it down so that he could help us. Immediately, we told him not to lay it down.  The police weren’t necessarily appreciated in that neighborhood though we had a police room in this same complex.  He came to help, shotgun and all. Shotgun flailing at risk of firing, perpetrator kicking, punching, going for our guns… we got one cuff on him.  Other police officers arrived.   We all finally cuffed and subdued him enough to get him into the ambulance.

“My partner and I looked at one another after it was over.  Minor injuries, no hospitalization, and we were still alive.  We sat in the cruiser, looked at one another again and cried.  We followed the ambulance to the hospital.”  The perpetrator’s family probably followed as well.  They were the ones who called the 911 operator,   “… giving a warning that he was out of control.  He had attacked them first.  When we showed up, he had gone from attacking his family to attacking us.

“The incident made me more aware of my mortality, but it did not change my path.  I had joined the Dallas Police force in my early 20s.  Later, I became a detective.  I loved the rush, chasing people, figuring out what the bad guy was doing and stopping him.  I always kept in mind that it could have been my partner or me on the department’s memorial wall.

“After marriage, I left the force.  When divorced, I made an attempt to return.  But, there were too many changes.  Somewhere in all that, I earned a Master’s Degree in Counseling Psychology.  Then my kiddos came into my life as foster children.  As foster kids, each was required to get five shots at fifteen months old, all in one day."

Roughly, two weeks after the vaccination, Lexi seemed unaffected.  But, Tori quit talking.  She quit giving eye-contact and stared blankly.  “Tori had started saying little things like mommy and bye-bye, the little things that babies say.  She stopped talking whatsoever:  no more hugging and kissing, no more eye contact.  She reacted differently to things that I said.

“She was already behind in development and had occupational and physical therapy because she was born premature.  Both therapists thought that her lagging development was due to that condition.  I asked them about autism because, in my work, I knew about it.  The recurring comment was, ‘She is too social to have autism.’  They fought me on the autism diagnosis.  Her ability to read labels at the grocery store at age two didn’t help my argument.  So, I contacted a children’s hospital.  The hospital stated Tori needed to be at least two and a half years old before she could be tested.

“I scheduled her for testing so that the appointment fell on the first possible day she would become eligible."  Michelle continued with the prescribed care.  MEDICAID paid for care because Tori and Lexi were both under foster care.  That stopped after Michelle’s application to adopt the twins was approved.  “My insurance was used to cover the exam and the testing for autism.”

“One day at the doctor’s, I talked about how Tori crawled on one knee, her right knee, like her left leg was dead.  She pulled herself with her arms.   I don’t think I heard but four words.   Bone infection!  Death!  Hospital….  Then, I drove.  I mean…Al… seriously… I drove to the hospital!  Everything and everybody was in my way.  My car was not fast enough.

“After seven or eight hours at the hospital, the doctors ruled out a bone infection.  They did not know the cause of her awkward crawling.  An occupational therapist saw her and said that the only other time she had seen something similar was with one of her young patients who had autism .”

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