All I Can Handle: I Am No Mother Teresa: A Life Raising Three Daughters with Autism by Kim Stagliano & Jenny McCarthy – eBooks (2010). Extended Book Review with < My Thoughts > by Sara Luker
Excerpts from the book – (3% indicates location in the Kindle version of the book, instead of page numbers).
Excerpts from Kim Stagliano’s Introduction
3% My sector of the autism community has taken a real hit in the media recently. We’re the crazy folks who are anti-vaccine (so not true), believe in junk science (buzzzzzzzz – wrong answer, thanks for playing), and spend our waking hours molding fashionable hats out of Reynolds Wrap. I look horrible in silver – no tinfoil hats for me.
Just a lot of questions on why autism rates continue to soar, catapulting entire families into emotional, marital, and financial chaos. All three of my daughters – Mia, Gianna, and Isabella – have autism spectrum disorder. Autism is diagnosed four times more often in boys than girls. Given the boy-to-girl ratio, you can see how our family is pretty unique.
After reading about our lives, you’re sure to feel better about yourself. That’s promising, isn’t it?
End of excerpts from Kim’s Introduction
Excerpts from book by Kim Stagliano & Jenny McCarthy, with < My Thoughts > by Sara Luker –
7% Having a child with autism is like a giant game of chess. You need to think several moves ahead to ward off potential problems.
9% Before I really knew what was going on with my first two daughters, Mia and Gianna, I had an incident that, in hindsight, was where I veered off the Suburban Mommy Street and onto the Autism Autobahn.
I have a perverse relationship with food… I hate to let other people see me eat. But, I’ll save the food issues for another book. During one of Mark’s trips, I was ravenously hungry come dinnertime and, with no husband or other adult around to see me eat, I wanted Chinese food. I’d fed the girls their dinner. I called in the order, bundled the girls into the car and off we drove into town. My stomach was growling, and I could almost smell the eggrolls.
We pulled into the parking lot, found a place to park near the supermarket. I picked any old spot. Again, this was pre-autism diagnosis. I got 3-year-old Mia out of her booster seat and tried to get 2-year-old Gianna out of hers. She’d have nothing to do with me. She started screaming a shriek of death, pain, and dismemberment – she had these toddler meltdowns regularly.
To keep Mia from wandering out into traffic I wrapped my leg around her, twisting my body into a bizarre ballet pose. Mia had no sense of danger (common in autism), but fortunately she had only two speeds of motion, turtle and snail. This was a blessing, at the moment.
But, Gianna was not about to cooperate. I finally got her out of the car…she threw herself onto the pavement and continued to scream. She had almost no speech at the age of two and screaming was all the poor kid could do.
I approached my own meltdown…I was hungry, and food was just steps away. I didn’t own a cell phone so I couldn’t call the restaurant to ask to bring my food out to the parking lot. And, I had strict mommy rules which would not allow me to leave my girls alone in the car.
I struggled a bit longer with the girls then finally gave up and drove home without my food. Maybe I should have left my girls in the car long enough to pick up my food, but again my strict set of motherhood rules would never allow me to do that. Nope, I will never be that hungry!
14% When did I first know? At ten months, Mia said her first words. “Shhhhoooo” as I put on her shoes and socks. She could recite her alphabet at twenty-three months. If we asked her to get a specific book – she would go and get it. Her receptive speech seemed intact. But she only used her words as labels.
< My Thoughts > “...used her words as labels.”
Some children with autism begin to communicate needs and wants by the 'label'. Whatever the child has the mental and physical facility to say. Certain sounds are more difficult to make than others. That is why neurotypical babies say 'da-da', first. Because it is much easier to say than 'mama'.
Our Sonny is truly non-verbal. He can make sounds. And when he emits the sound 'ei' it almost sounds like 'Hi'. He chuckles, but doesn't cry. The sounds he makes when he tantrums, or has a meltdown are almost primal-like. He uses a one-word communication board with 'eat', 'drink', 'toilet', 'help', 'ride'.
Zamuner, T., Fais, L., et al. (2014) feel that during the first year of life, early words usually include use of linguistic labels to acknowledge people, objects, and events. Learning words is a complex task where children often learn labels for familiar things first, before they associate an unfamiliar word with something novel to them.
O’Neill, M. (2023) observes that some children with ASD often have difficulty learning to talk because of "primary, brain-based deficits in understanding the social, back-and-forth nature of communication." She believes that with time and support, many nonspeaking individuals can "learn to communicate through sign-language systems or gestures, picture-based systems or augmentative or technology-assisted options such as speech-generating devices.”
Lungamhlongo, M. (2023) tells us that children and/or adults with autism refer themselves in the third person when they speak. autistic children who are non-verbal can hear but just can’t speak except by saying a few random words here and then occasionally. These children are considered non-verbal because they only use a few disconnected words to communicate what they want.
I thought ‘kuka’ was my son’s Morse code for toilet. Then one day, after tantrumming, he opened the fridge, took out the milk, gave it to me, and said ‘kuka’ again. So, ‘kuka’ means he wants cereal for breakfast.
Every non-verbal autistic child has their own ‘kuka’ words. One friend’s child sings the happy birthday song, for everything. That’s his Morse code. Then, you must figure out what he wants. Autistic children who are non-verbal can hear but just can't speak except by saying a few random words here and there.
14% She never called out to me. She cried. She came to get me when she needed something. But she never used her voice to attract my attention. Another warning sign I missed. Her photographs as a toddler show a beaming girl, happy to flirt with the camera. She made eye contact and also used imaginative play.
< My Thoughts > “...when she needed something.”
More often than not, a nonverbal child will seek out someone, grab them by their nearest body part and attempt to drag them to what is wanted or needed. There is anecdotal evidence of this in parent interviews, but reports of this seem to be absent in the literature. With Sonny we found ourselves saying, “Show me what you want,” which resulted in him dragging us to the refrigerator, or the toy room. Which came first, our asking him to show us what he wanted; or, him instinctively dragging us to what he wanted? Honestly, I don’t know. Eventually, he was ready to use 'baby signing', then a simple push button device.
15% One summer, my sister Michele was visiting from Texas. Her son Colin was four years old. We only saw each other once or twice a year, so this was her first opportunity to spend time with my girls since the previous summer.
“Mia has autism,” my sister said hysterically. “How could you not know?” “How dare she say that!” I was immediately angry…she was shattering my carefully built wall of denial. I realize now it took a great deal of love and courage for her to drop that bomb on me.
I dutifully took Mia to the Children’s Hospital of Philadelphia. From there we contacted Early Intervention. When your child qualifies for help, it’s a bittersweet moment. You’re grateful for the help, trust me. But, in my heart I wanted Mia to blow off the doors of the tests and tell them all goodbye.
Mia lost two valuable years as we pursued only therapy. Years later, I discovered that Defeat Autism Now doctors were in the very next town. I am dead certain our lack of medical care and options allowed her autism to progress to the point where she had developed seizures. I had no network…I wasn’t part of the autism underground…so I didn’t know they were just nine miles from my house.
24% Mia is our most affected child. If you were to meet her, you’d first notice her great beauty. She speaks in short phrases, mostly to make her needs know. “Can. I. Have. Food. Please.” She’s content to play alone. You can usually find her at her computer or watching Sesame Street of Blue’s Clues. Mia’s heart-stopping autism moment lasted almost four years. She had her first seizure when Bella was just a babe in arms.
17% I missed the signs in Gianna. Her cheeks were papery and red. Her nose ran constantly. She had surgically implanted ear tubes as a precaution to help her speech. Her speech still did not develop. Her behavior was atrocious. She spent much of her day screaming and bolting away from me.
24% Gianna’s autism moments are usually like bolts of lightning. They strike and then disappear, like when she wanders away from us.
Mia was compliant and passive. Gianna was defiant and overactive. It never occurred to us that they could have the same thing? Eventually, Mia and Gianna were both formally diagnosed with autism.
27% Bella, our third girl was moving into toddlerhood with her own set of issues in terms of development. She wasn’t crawling, sitting up, or even reaching out properly. And Gianna was nowhere near under control.
Mark’s and my life became a blur of preposterously extreme parenting with the single goal of making it through the day.
29% I’ve had one daughter wander into a stranger’s home. Another daughter whose seizures nearly killed her, and a third daughter who fell out of bed and broke her arm and couldn’t call me for help. Ain’t autism grand!
27% Poor Mia had at least seven grand mal seizures and her poor body was racked with exhaustion after each seizure. I had no idea what they were doing to her brain, and frankly, the medical community just clucked its tongue and turned its back on her. To them, seizures and autism seemed to go together like peanut butter and jelly.
I walked away from neurology and traditional medicine to seek my own answers.
< My Thoughts > “…to seek my own answers.”
With Sonny, the doctors didn’t even seem to recognize that he was having seizures. He just fell down a lot and had tantrums for no reason. We finally happened to tell this information to the ‘right’ General Clinician who had a neurologist friend that talked about a rather rare seizure disorder called Lennox Gastaut Syndrome (LGS). Our doctor referred us to his neurologist friend. This neurologist knew right away that Sonny had LGS.
To satisfy the insurance company, he performed the appropriate tests and meanwhile, prescribed a new medication which was just approved to treat this condition. Sonny still has seizures. Sometimes continually, but they are manageable. Considering that prior to taking the new meds, Sonny had three grand mal seizures which caused him to lose skills. As a result, he no longer feeds himself nor holds a cup. He cannot dress himself and needs constant attention and cueing for the bathroom. So it’s sort of a ‘good news’, ‘bad news’ situation.
33% Mark and I had talked about taking the girls to Disney for years. Mark would log on to the Disney site, look at the prices for the hotels and log off with a sigh. We couldn’t afford Disney.
Finally, in 2007, we decided we were ready for the big trip. One of the perks of Mark’s new job was earning a slew of Marriott points. He and Gianna circled the date on the calendar and began the countdown to the trip…some five months away.
That’s when my work began planning the myriad details of the trip. Now I had to think about feeding the kids while away. They don’t eat gluten (the protein found in wheat, oats, and rye) or casein (the protein found in dairy).That rules out pretty much every food that comes in a paper bag or on a paper plate. I consulted the hotel, and they came through with flying colors. In this world of celiac disease, lactose intolerance, and nut allergies, chefs are prepared.
I was also worried about getting separated from the girls in a giant theme park. Mia and Gianna speak pretty well, but they don’t often answer questions. Bella can say her name, but that’s not enough were she to get lost. I printed up stickers with each girl’s name, our cell phone numbers, and the sentence I hate to type…I HAVE AUTISM. I made up bio sheets for them with their photo…just in case.
The departure date approached. It was time for me to pack. I follow the kitchen-sink method of packing. You never know when a cold snap could grip Orlando, after all, so in went the turtlenecks next to the swim suits. By the time we left, I knew I had everything the girls would need.
Finally, October 6 arrived! Giana was thrilled. I was exhausted. Time to load up the car for the airport. The flight itself was a breeze. The girls were happy and well behaved. I felt triumphant when we landed.
34% We checked into the magnificent hotel. Bella was in her glory at the sight of a waterfall. Mia was entranced by the glass elevators going up and down. Gianna was awestruck by absolutely everything. Mark and I spied the Starbucks and grinned. Vacation!
Our first glitch was when Gianna realized she had left her lovey Manatee in the car at the airport. This was not good. I thought fast. We went for a tour of the hotel, and SeaWorld had a small gift shop that included manatees. I was proud of her for accepting a new friend for the week, knowing her ‘real’ Manatee was waiting for her back home.
Our next glitch…was when my mom, who had joined us for the trip, was talking on the phone to my brother and had her back to the door. Mia slipped out of the room. And Bella followed her.
I ran out the door. Bella was in the hallway. I shoved her back into the room. My poor mother was crushed with guilt, but I didn’t have time to worry about her. My child was missing in a 2,000-room hotel on 200 acres.
I raced to hotel security…panting, “She’s missing! My daughter is missing! She has autism, you have to find her!” Of course, I forgot to bring her bio sheet. I shouted to everyone I passed…”I’m looking for my daughter. Her name is Mia. She has autism. She looks a lot like me and is wearing a blue T-shirt.” Everyone was very kind…some guests started looking. My panic was turning to fear.
35% I heard a voice: “We have her! She’s here!” What a relief. Mia had gone exploring. Those elevators were too interesting for her to pass up. She didn’t have the speech to tell Mark and me that she was twelve years old, bored in the hotel room, and wanted to take an excursion. A woman in the glass elevator recognized Mia’s mannerisms, as she was counting the hotel floors aloud, and immediately…because she had a grandson with autism, guided Mia back to the lobby, where security took over. Mom felt terrible…there’s no room for error with autism… constant vigilance is a requirement. No one got lost again…until we landed in Newark Liberty Airport.
We were on the elevator… “Where’s Mia?” She’d slipped off again, and no one had noticed. Getting lost in a luxury hotel is one thing…getting lost in an international airport where there are trains that whisk you to another terminal within a few feet…is beyond this mother’s ability to comprehend. I lost it.
Mia’s guardian angel was still on duty; Mark found Mia upstairs near the train. I was shaking with anger when we got to the car. “Manatee! You’re back!” All was right in the world for Gianna. I smiled in spite of myself. My breathing slowed down and my heart stopped racing. I let my anger go. In time I might even forgive myself for not keep Mia safe.
36% Autism can make for a lonely life. I remember how I felt when the girls were first diagnosed and how much I would have loved a place to go…not to mention how much time and money I could have saved.
39% Vaccine safety and informed parental consent is one of our hottest topics at Age of Autism in that it draws the most critics, to which I say, “Bring it on.” It is my great responsibility and honor to sound the alarm bells about the autism epidemic every day.
< My Thoughts > “Vaccine safety and Age of Autism…”
Vaccine safety remains a 'hot' topic, today. Kim Stagliano Rossi is the Managing Editor of Age of Autism. The nation's first daily web newspaper about the 'autism epidemic'. Online – www.ageofautism.com.
Barazza, L., Schmit, C., et al. (2017) cite that “All 50 states require children to receive certain vaccinations before attending public school, and often these requirements extend to children attending day care or private schools.”
< My Thoughts > "All 50 states require..."
School-age children are often mandated by the state to provide 'proof of Vaccination'. These requirements vary by state, and even school district. The most commonly required by state law are – MMR (Measles, Mumps, Rubella), Hepatitis B, Tdap (Tetanus, Diphtheria, Pertussis), Varicella (Chickenpox), and Polio. Some states allow exemptions for religious reasons, and / or children with compromised immune systems.
40% Where’s the alarm over autism, the escalating numbers, the future? It seems no one in our government is willing to declare autism an emergency, even though it is an epidemic that continues to grow year after year and is likely to have a huge impact on our Social Security system.
65% Ask any special education teacher over the age of forty-five how many kids with autism they had in their classrooms, whether in public or state school systems, and they’re going to tell you, “One. Two. None.” Now go ask a special education teacher who’s been teaching for the last five years the same question and then stand back.
66% Today, we have entire schools devoted to teaching children on the spectrum. Tomorrow we’re going to need high-rise apartments to provide safe residences for many of them. We become immune to numbers.
< My Thoughts > “Today, we have entire schools..."
“Today, we have entire schools devoted to teaching children on the spectrum.” Even teachers in today’s general education classroom must be able to teach and reach ‘all’ students. Many times the teachers will be the first to identify learning disabilities, or those students struggling with learning deficiencies. Hopefully, that child can then be brought to the attention of those who can develop interventions, or can recommend a team approach. Thus, supporting the child, instead of leaving them floundering in an overcrowded general education classroom without support.
94% My kids struggle mightily. We’ve been through three bouts of unemployment. Our last three homes have been little more than bivouacs as we’ve traipsed about New England. Yet I have never once asked, “When is it my turn?” This is my turn. I love my life. That doesn’t mean I wouldn’t change the autism part for the girls. If I had a magic wand I’d wipe the autism right out of their lives like peeling off the skin of an orange. I know there is sweet fruit hidden under the bitter pith and the rough skin. How many people can honestly say they wouldn’t change anything about their lives?
96% As our married life and our financial life become more stable, I feel hopeful that my sometimes paralyzing fears about the girls’ futures will subside as we help them build happy, safe, adult lives. Will they live under our roof until we’re old? Will they find a shared community home with support? I don’t know.
Note: For further information on ‘Resources’ go to this website’s MENU for Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Read online here, under UNIT 6 – Where to Look for Resources? CHAPTER 4 a. 40 Something b. Geriatrics (Resources & get on ‘waiting lists’, Finances. Individual’s Insurance, Health Care, Colleges, Adult Day Care, Adult Group Homes, Assisted Living, Nursing Facilities, Hospice/Palliative.)
57% At one time I’d had a plaque with that saying from Mother Teresa: “I know God will only give me what I can handle. I just wish God didn’t trust me so much.”
96% But I’m learning to trust in God that I’ll find the right answers because God has answered many of my prayers. This is my turn. I’m not going to waste it.
End of excerpts from this book by Kim Stagliano & Jenny McCarthy.
References:
Barazza, L., Schmit, C., et al. (2017). The Latest in Vaccine Policies: Selected Issues in School Vaccinations, Healthcare Worker Vaccinations, & Pharmacist Vaccination Authority Laws; Journal of Law, Medicine & Ethics; 45 S1;16-19.
Lungamhlongo, M. (2023). Learn How Children with Autism Use A Single Word to Communicate Everything. Retrieved online from – https://theautismguide.medium.com/learn-how-children-with-autism-use-a-single-word-to-communicate-everything-122cc3e/
O’Neill, M. (2023). Nonverbal Autism: What It Means; Health Beat. Retrieved online from – https://www.nm.org/healthbeat/healthy-tips/nonverbal-autism-what-it-means#:
Zamuner, T., Fais, L., et al. (2014). Infants track Word Forms in Early Word-Object Associations; Developmental Science; 17:4; p 481-491.
