Autism Triplet Twist: Survival Stories of Parents, Triplets and Autism by James E. Potvin, eBook 2013 Edition; an Extended Review with < My Thoughts > by Sara Luker
Excerpts from the book – (6% indicates location in the Kindle version of the book, instead of page numbers).
Excerpts from the book, with < My Thoughts > by Sara Luker
6% I have lived this story and been able to make sense out of chaos. I am the father of triplets. Our triplets are all fraternal girls. Our story is unique and different. I have been told by friends, family and total strangers that I should write a book. This is that book!
9% Twist 1: OMG! We’re having triplets! Congratulations, you are having triplets! Say What? Are you sure? It was now confirmed. My wife and I were expecting triplets. The ultrasound showed three separate, healthy heartbeats.
I remembered there was a warning on the pills my wife took at the doctor’s recommendation, a very small warning, in extremely fine print. There was a tiny chance you could have multiples… like winning the lottery. How had we beaten the odds? Our doctor said that in the twenty years he’d been practicing, these were the first triplets off those pills.
12% Melissa was taking MBA classes at a nearby university. She eventually got too big with the triplets to reach the gas or brake pedals. When she finished her last class we decided her education was complete. She had enough classes to graduate. Two days later, our lives went into overdrive.
On the way to the doctor’s office, my wife wanted to shop for shoes. The weird cravings to get a Whopper Junior at 11pm were now a craving for shoes. We stopped at the mall and an hour later she had new shoes for her doctor’s appointment.
An hour went by and she was still in the doctor’s office. I began to pace around the waiting room. After ninety minutes, the receptionist told me that my wife had been admitted to the hospital.
13% The triplets were going to be too high risk for our local hospital. The hospital we needed was an hour and a half drive from our house, but they had the staff to handle the triplets’ situation.
The babies had made it thirty two weeks. I darted down the glass corridor over the street and into the hospital. I stopped at the hospital desk and asked for directions. I took the elevator, up a few floors and down a long hallway. There she was, my wife, lying in a hospital bed. She told me to sit down; we weren’t going home anytime soon.
Morning finally dawned and the doctor entered the room. He said he would get everything ready and start the process in about forty five minutes. Melissa was told she could not eat, so I ate her breakfast for her and told her how good it tasted.
14% Two doctors worked on Melissa while three nurses were there to catch the babies. I snipped three umbilical cords. After a quick picture session, the babies were whisked away to incubators.
Due to the lack of immunity, our babies were in incubators. The incubator had robot arms so you could hold the baby through the incubator. It felt like I was working in a lab.
My wife was transferred from the hospital to the Ronald McDonald House. After three long weeks, the kids were transferred by ambulance to a hospital near our home. The girls could not leave the hospital until they weighed over five pounds.
< My Thoughts > “The girls could not leave the hospital until they weighed over five pounds.”
According to Cory Hatch, My Health News Daily Contributor (2016), new research suggests that autism is possibly five times more common among low birth weight babies. Researchers think that perhaps brain hemorrhaging or bruising associated with these babies could explain a higher rate of autism.
Further contributors could be the technology and medications used to keep them well enough to meet a healthy weight criteria. Retrieved from – https://www.livescience.com/16576-autism-birth-weight-babies.html.
16% All the girls fit in one bassinet when they came home from the hospital. That was about to change. The girls began to grow. We decided to separate them into their cribs.
19% Sarah is the youngest of our triplets. From her mini seizures early on, it was clear that Sarah had issues. We transported her to numerous physicians, trying to get a correct diagnosis.
20% She walked on her tip toes most of the time. We drove her to the autism center at the University of Michigan to get their opinion.
< My Thoughts > “She walked on her tip toes most of the time.”
Toe walking and walking with an unusual gait is often seen with children with autism. Retrieved from: https://www.autism.com/symptoms_toe_walking, author Stephen M. Edelson, Ph.D. says that toe walking is quite common in young children, but if it persists beyond the age of 3 it may be associated with neurological immaturity.
He points out that there are several interventions. One is to have physical therapy to stretch out the tendon and prevent walking with legs stiff. Another successful approach is to fit the child with Prism Lenses which are part of a vision training program. The last intervention is more invasive and that is wearing leg-casts or to have tendon surgery.
20% Sarah was fitted with orthopedic shoes and leg braces. After a couple of months, her legs and feet straightened. Her braces were removed.
21% Sarah made little eye contact. She did not want to play with the toys in the room. She made some odd noises and flapped like an eagle. She did not look to us for guidance.
The physician emerged from the secluded observation room.
Then he spoke. The doctor said, “Sarah has autism.” We did not know anything about autism, except there was no known cause or cure. It wasn’t like the chicken pox that would go away. The doctor said he observed multiple autistic behaviors while in with Sarah.
22% The only benefit of this visit was that we finally knew why Sarah acted differently. The diagnosis was unfortunate and I knew Sarah would lead a different life than I had wanted for her.
< My Thoughts > “I knew Sarah would lead a different life than I had wanted for her.”
In one of my previous ‘extended reviews’, author Ken Siri (2010) shares this heartfelt message with parents…
“It’s not your fault your child has autism…it never was…and it never will be.” “Parents of children with autism need to adopt the mentalities of both a researcher and a warrior.” “Allow no language of victimhood. Teach empowering words that tell them they are without limits.”
Rogers (2007) quotes parents of newly diagnosed children that she interviewed as saying, “This child, my son, was expected to fill a role.” Another said, “The illusion of a ‘perfect’ little girl I’d push around in a pram was shattered. But, I was able to cope and come right with it.” Yet another exclaims, “This can’t be happening to me. Perhaps I’ll wake up tomorrow and it (autism) won’t be there.”
Rogers says, generally parents felt robbed of their “claim to happiness” “stripped of their hopes and dreams,” “I lost a lot of friends, too.” They all shared a “yearning for normal parenting.” As a result of the study, it was suggested that parents facing ‘emotional angst’ seek counseling in order to come to terms with the ‘diagnosis’ and to deal with their ‘contradictory state of mind.’
27% Andrea is the oldest triplet. She was very calm when she was young. She was the kind of kid that would be content to watch TV all day. She could sit and play with the same toy for hours. Andrea kept herself occupied most of the time. Something seemed amiss. Kids are usually more active and have short spans of attention.
28% We asked our pediatrician what was wrong with Andrea. Why did she have all these odd quirks? Our doctor sent us to a specialist. After two minutes, he told us that Andrea also had autism. She displayed different signs than Sarah. Andrea did not flap like an eagle, but she did take her toys, dance around the room and make the same noises over and over.
< My Thoughts > “Why did she have all these odd quirks?”
The professional literature reflects that ‘odd quirks’ seem to be some sort of response the environment. The child or adult may have sensory issues, may be feeling anxious or excited, or having an obsessive compulsive moment. Somehow, the brain is telling the body to perform these ‘odd quirks’.
“When I was dancing, and twirling, and listening to the music, I could drown the world out.” Twirling Naked in the Streets and No One Noticed; Growing Up with Autism, by Jeannie Davide-Rivera; eBook 2013.
“Scott would jump up and down as he made different loud noises.” From: Secondhand Autism, by Paul Brodie; eBook 2013.
28% She loved routines and became upset if the anticipated routine was altered. Andrea was autistic; she was just at a different spot of the autism spectrum than Sarah.
Rachael, the middle triplet was still normal. At this point, we realized that having one child with autism was expensive. Having two children with autism requires serious financial planning.
Autism insurance was not available to us until the girls were 14. Here is a link to see if your state has autism health insurance available: http://www.ncsl.ort/issues-research/health/autism-and-insurance-coverage-state-laws.aspx.
There are numerous state programs designed to help families with autism. Look for autism centers or programs with local colleges and universities. Private organizations may also have programs available.
< My Thoughts > “Autism insurance and private organizations with programs available to help families with autism.”
In the current political climate just trying to have insurance coverage for the massive amount of testing, evaluation, diagnosis, medication, therapies, and intervention programs is daunting for the parents. Sonny’s medications alone cost thousands of dollars, monthly. Without them he has increased seizure activity and a very limited lifestyle. Without the help of insurance, financially we would not be able to provide for his needs.
Boulder, et al. (2009) tell us that “Many states are considering legislation requiring private insurance companies to pay for autism-related services.” That, “Empirical studies of healthcare expenditures for children with autism spectrum disorders range from three to ten times those of other children.”
Years later, advocates are still seeking legislation and asking for help for parents of children with autism. In a commentary in the Brown Univ. Child & Adolescent Behavior Letter (2012), the writer asks “How would people react if there weren’t yet coverage for all cancers, but only certain ones?
If for example, there was only coverage for melanoma and no other forms of cancer?” He adds that an early diagnosis of Autism can subsequently change significantly to include a “crossover diagnosis” if later the child experiences co-occurring mental illness or epilepsy.
Thus the odds are even greater that the family’s insurance with not provide coverage. At least without a fight!
42% At the feeding clinic, we discovered Andrea had been gumming her food. She had not yet learned to chew. To correct this, Andrea had two hour long sessions, daily. One in the morning and one in the afternoon, for an entire summer.
Sarah would beg for food every hour. Her digestive system did not digest her food properly, but her brain always desired more food. Sarah ate more than Andrea and Rachael put together. The amount of food combined with a poor digestive system caused intestinal problems. Her system would get clogged up.
Her behavior would be severely altered when she was clogged up. She would turn into an angry kid that couldn’t communicate. Her stomach would cramp and she would lash out as the nearest caregiver.
She would scream uncontrollably. She would pinch multiple times drawing blood. She had not understood the potty training thing and could not eliminate.
< My Thoughts > “Her behavior would be severely altered when she was clogged up.”
With Sonny, his ‘controlled substance’ meds tend to cause constipation so the doctor also prescribes a natural plant-based laxative and stool softener. We adjust these according the daily intake of fiber in his foods. He’s not always cranky when he’s constipated, but it’s my belief that the sooner the toxins from his meds leave his body the better. Just saying.
Retrieved from: http://ericchessen.com/tag/autism-health/ Author Eric Chessen, the words ‘autism’ and ‘fitness’ are rarely expected to be seen in the same sentence. A lack of exercise and really poor diets like a lack of food variety and eating processed foods and you’re likely to have Gastrointestinal issues.. He also says that routinely doing daily exercises may relieve some of the autistic child’s need to flap, and run in circles.
Some physical therapists recommend doing ‘Rotational’ exercises, which can be done sitting or standing. They are done by rotating or swinging arms back and forth, crossing at the midsection. Reaching around the body this way massages internal organs. Standing and twisting back in forth while holding a ball can also aid digestion and assist with balance.
43% We were advised to try gluten-free, casein-free diet for Sarah, this helped. She became less agitated and more relaxed. There was one problem; she craved the foods with gluten and casein like a drug addict.
She would steal food off her sister’s plates. She would pinch them until they bled and ran off crying, leaving their food unattended. She would get into the refrigerator, freezer and cupboards.
Our solution was a total food lock down. The refrigerator was now locked. The cupboard was child proofed. We added an outside freezer and storage bin in the garage where we could store foods Sarah could not eat. Problem solved.
47% One cool spring morning, mom had already left for work. Dad was still asleep. Andrea decided she was going to the library. It didn’t matter that it was 6:30 am and the library was not open yet, nor did she know how to get there.
Andrea enjoyed looking at books for hours and that was what she wanted to do this morning. Andrea looked at the door. The keys were on the counter. She silently turned the key in the lock and left the house, leaving the door wide open.
48% Andrea sauntered toward the library. She wore only a diaper, the same one since last night. Andrea was autistic. She had no fear of cars, no fear of traffic. The thoughts of uninhibited reading of unlimited books drove her towards the library. Traffic and social laws did not concern Andrea.
< My Thoughts > “Traffic and social laws did not concern Andrea.”
Education Journal, Research (2012) – quoted from the Journal of Pediatrics that random wandering or running away from homes and classrooms faced increased risk of injury or death. They went on to say that autistic children of all ages were in danger of drowning or injury from traffic.
The reason they give is that these children seem unable to learn the ‘social referencing’ which poses potential danger. The child just heads for a particular point of interest, or away from an uncomfortable or unwanted situation. The article suggests the child be fitted with an identification bracelet or tracking device as well as having appropriate educational supports.
That’s how I met Sonny; he kept running away to my classroom. He had to travel through several corridors to find me and sometimes when the door was open, I didn’t see him slip into the room. He liked to dump out the box of crayons in the back of the room, and that was the ‘give away’.
As soon as his teacher appeared in the doorway, Sonny scooted out and ran back to his classroom, only stopping for a quick drink at the water fountain. Eventually, Sonny earned a ‘visit to my classroom’ as a reward for his on-task cooperation. And of course, years later he became our adopted son.
48% Her feet were bare as she continued down the street.
I awoke and put the alarm clock back to sleep. The house was quiet, way too quiet. I eased out of bed. I stretched and yawned. Coffee was already made. I poured a cup and took a sip.
The TV was on, tuned to Andrea’s favorite show. I took another sip of coffee. It was still too quiet. I searched for Andrea, but she was not watching TV. She was not in her room either. I searched frantically, but no Andrea.
I went to the front door; it was wide open. The keys were in the lock. I knew Andrea had escaped.
49% Out in the street, cars swerved to avoid the kid in the diaper. Brakes were slammed, tires squealed. Andrea remained focused on the library. The darkness camouflaged her. The white diaper was the only warning to hurried drivers.
This was a dangerous game where the difference between winning and losing was life and death. I had to find Andrea.
50% Just then, the police car pulled in my driveway with lights flashing. I ran outside and up to the police car. The officer asked if the little girl in back belonged to me. “Yes”, I stammered.
The officer said I had the neighbor to thank for Andrea’s pants and blanket that I didn’t recognize. I explained about the autism. I had the officer to thank for saving her life. Andrea was safe due to his swift reaction.
52% Today is Sarah’s scheduled day at the dentist. She is seven years old. Most kids only take an hour for a dentist appointment. Sarah is not most kids.
In the kitchen, Sarah enjoys her bacon. She is still hungry, so I make her two waffles. She requests peanut butter on the waffles. Sarah eats them at soon as they hit the table.
Applesauce comes next. It’s the only way she can stomach her medications is through flavored applesauce. I feed it to her to speed the process. It’s almost time to leave.
I find Sarah’s shoes and socks. She struggles, but I get them on her feet. The coat is added next. Sarah grabs a glass of water on her way out the door. Into the car we go.
The dentist is meeting us at the hospital. Sarah is not a normal kid. It is too difficult to use sharp instruments in Sarah’s mouth at the dentist office. She throws a fit and everything must be done by restraining her.
54% We enter the hospital lobby and check in with the receptionist. Sarah is antsy and squirming to escape already. The nurse leads us to the elevator. Sarah flaps like a bird on the way up. Her flapping is the nervous result of her autistic reaction. She does not understand where we are going or what we are doing.
< My Thoughts > An unfamiliar setting can bring on stress… Stress begets stress relieving behavior…
Most of the literature speaks to the child’s stress management, like flapping and twirling, as an undesirable or unwanted behavior. Many repetitive behaviors like that are simply stress relievers. But Sarah’s parents know how to settle her down and replace the repetitive behavior with an alternative ‘competing behavior’. This is accomplished by letting her watch her beloved Elmo movie on her portable DVD player.
The practitioners of Positive Behavioral Support (PBS) agree that ‘competing behavior’ is a way to effectively reset events so that the child’s undesirable behavior is replaced by a more productive and successfully ‘competing’ behavior like watching Elmo. Retrieved from – http://apbs.org/files/competingbehav_prac.pdf
54% She knows to run from the pain. She struggles as we enter the room. Sarah kicks the door frame and throws a tantrum trying to escape. The tantrum subsides and she is lead into the room. Sarah is very restless.
We set up the portable DVD player with her favorite Elmo movie. Sarah settles down, but is very wary.
The nurse enters the room. She is armed with medication to sedate Sarah. Sarah screams in pain, but the shot is done. We let Sarah watch her movie again. She is now on mommy’s lap. We feel helpless as we cannot protect her from the dentist.
Her teeth must be cleaned and a couple of fillings are also being applied. She is wheeled to the operating room. All this just to clean her teeth.
< My Thoughts > “All this just to clean her teeth.”
If something is in Sonny’s mouth it must be to bite or chew. Right? Of course this includes anyone’s hands or fingers. So, it stands to reason we would never ask a dentist or dental technician to stick their fingers into his mouth. It’s difficult enough to brush his teeth on a daily basis. A very gentle and caring dentist tried for several times to get Sonny to open his mouth while sitting between us in the waiting room. “Hah! We told you so!” I wanted to shout. Finally, she gave up. “Okay, he’ll need anesthesia just to examine him,” she agreed.
She said she’d submit the paperwork to the insurance company. But wait! We didn’t have any dental insurance. But wait, Sonny required an extensive and expensive dental procedure, under anesthetic, in a surgery room setting. For that you need insurance. They want to know everyone will be paid. Panic set in!
Fortunately, our town was large enough to have a dental college where students learn their craft under the supervision of professionals. We started making contacts and finally began the paperwork process.
Months later, we turned our son over to the men and women garbed in green for hours of ‘dental surgery’. After this first time, he had a grand mal seizure because he had missed his meds during surgery. Now we know that he has to have meds on schedule, just to be safe.
55% Sarah kicks and screams. More sedation follows and the procedure starts. Next the fillings are done and Sarah is wheeled back to the hospital room.
Sarah remains almost comatose for almost an hour. Then she rolls over and reaches for the DVD player. The videos relax her and tell her everything will soon be back to normal. It’s soon time to go home.
57% I was trying to finish the yard work before it got any hotter. The summer projects were abundant. My neighbor and I were working next to the fence on opposite sides. We struck up a conversation. “How are the kids?” he asked. “The kids are doing fine,” I replied.
But I noticed it was too quiet and checked on Andrea. She had been playing near me while I worked. She was not on the swing set. She was not on the trampoline. I figured she had gone inside.
59% I bolted into the house and searched everywhere for Andrea. I tried not to panic, but I had a sinking feeling in my gut. I dashed back outside to the yard. The neighbor was still there pulling weeds. “Hey, have you seen Andrea?” I yelled.
We both started running to our backyards, and then towards the neighbor’s pool we hollered for Andrea, but no answer. There was a board missing in the neighbor’s fence around his pool.
“Call 911” Joe shouted. I’ve got her, but she’s not breathing!” the ambulance arrived with sirens and flashing lights. Two men jumped out and began mouth-to-mouth resuscitation on Andrea.
Time stood still as I could only watch helplessly. She had not been breathing for several minutes. Then she made a gurgling noise. She coughed and sputtered, trying to get air. She opened her eyes. The CPR had been successful.
< My Thoughts > “CPR had been successful.”
CPR stands for CardioPulmonary Resuscitation and is part of the lifesaving techniques used to rescue those in trouble. The Red Cross, most hospitals, and many private agencies teach these classes. My suggestion is that you also take a class which includes (AED) Automated External Defibrillator training. These trainings should also include learning what to do if a child or adult is choking; such as the ‘abdominal thrust’ known as the Heimlich maneuver.
Trainings can include Basic First Aid (Medications can cause unusual wound bleeding… know how to treat ‘bite’ injuries.); make certain that all trainings show you how to deal with both children and adults. These classes are all offered online, also. But this is something you may want to do in person. Just saying.
59% There were no apparent signs of brain damage. It looked like Andrea would be fine.
74% Have you ever wanted to escape your life for a few minutes? What if you could escape to somewhere without leaving your own house? I needed to find a quick escape from the daily estrogen, drama and screaming. Where could I go?
I decided to use the unfinished space in the basement for my personal escape, exercise, comfort and entertainment. A personally designed man cave of course!
What is it really like living with triplets? Here is what an average morning at our house is like. My wife and I get up between six and seven a.m. Andrea arises between six and six thirty. In the morning, we have found that divide and conquer works better than an assembly line for getting ready. Andrea gets up and asks to eat. She eats toast and sausage for breakfast.
After breakfast, we help Andrea get dressed. Without help, the pants and shirt often end up backwards or inside out. Then Andrea watches TV while everyone else gets ready. At this point, I make coffee, feed and water the dog and find my breakfast.
I take Rachael to school and come back home. Melissa gets ready for work. Rachael is the next one up. She wants everyone to be quiet. No talking or singing allowed. She is 14. The mirror in her bedroom can be friend or enemy, depending on her hair. She has a zero hour class that starts at seven a.m.
80% Sarah is the last one up. She runs upstairs and gets dressed. Sarah is on a gluten-free diet, so she eats sausages and gluten-free toast or waffles for breakfast. She won’t eat them unless they have been microwaved long enough to melt all the butter. While she eats, I put on her shoes and socks.
By 7:30 – 7:45, Melissa takes Andrea and Sarah to school and heads to work.
As a parent of a child with autism, you will soon recognize the need for a small break. It is not as easy as hiring a babysitter. Where do you find good help? We call it respite care.
We have had good luck with local colleges and universities. We hire students in the psychology, sociology or related fields. Many times, they have to do some sort of internship.
81% These students are young and have the energy to keep up with children with autism. They also give the child a break from routine. You help them by satisfying their graduation requirements. By paying them well, you ensure they do not take another job so you can get a break.
< My Thoughts > Speaking of “…satisfying their graduation requirements”… Our kids can also satisfy graduation/promotion requirements during an extended academic route.
According to the website, wrightslaw.com, children with an Individual Education Program (IEP) in place to help them reach their educational goals may receive public education until the age 21. Or, age 22 in some states.
So, our kids also have an opportunity to earn a promotion or graduation status through their Special Education IEP. In addition, every student becoming age 16 or older must have Transition Services as part of their Individual Education Program (IEP). This includes postsecondary goals related to training, education, and employment. Also when appropriate – independent living plans.
83% It is also helpful if there are special activities you can do with each triplet individually. An outing gives you a chance to recharge and refocus.
For Andrea, we taught her how to ice skate and ski. Andrea loves anything fast and dangerous. She has no fear. She loves roller coasters and speed boat rides. She goes on any trip to the store. Her favorite shopping places are book stores and toy stores.
Rachael is much more social. She spends time with her friends and school most of the time. She has friends over frequently and an occasional sleepover. She plays the viola and is in Color Guard. We support her by taking her to practices and attending her concerts. Rachael enjoys reading and her pets. She has a dog, a ferret, a chinchilla and a hamster.
Sarah is the youngest triplet. She likes doing puzzles and watching videos. She loves to eat and is often present in the kitchen. She enjoys long car rides and going out for French fries.
All the triplets are individuals, so we find it important to have special activities to do with each child.
< My Thoughts >
Along with other great ideas for creating special opportunities for the triplets, this book contains a section titled “Parenting Lessons Learned” with many more valuable tips.
This father and author, James E. Potvin, would like help in getting the publicity Hollywood requires to make this book, Autism Triplet Twist into a motion picture. He has a petition to sign at www.autismtriplettwist.com
End of Excerpts from this book with < My Thoughts > by Sara Luker
REFERENCES used in < My Thoughts > are:
Rogers, C. (2007). Disabling a Family? Emotional dilemmas Experienced in Becoming a Parent of a Child with Learning Disabilities; British Journal of Special Education; V34:3, p 136-142.
Siri, K. (2010). 1,001 Tips for the Parents of Autistic Boys; Skyhorse Publishing, N.Y., N.Y.