All I Can Handle:I Am No Mother Teresa: A Life Raising Three Daughters with Autism,
by Kim Stagliano & Jenny McCarthy – eBooks 2010; an Extended 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’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 Kim’s Book, 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 > “But she only used her words as labels.”
Zamuner, et al. (2014). 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.
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 > “She came to get me 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.
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. Mia had at least seven grand mal seizures and her poor body was racked with exhaustion after each seizure.
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’s body was racked with exhaustion after a 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 > “I walked away… 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’ GP who happened to have a neurologist friend. This doctor knew right away that Sonny had a rather rare seizure disorder called Lennox Gastaut Syndrome (LGS). He also knew that a new medication was just approved which was designed 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.
29% Three kids with autism and I’m bored? Yes, I missed the sense of achievement and positive reinforcement that work brings. I am not sure when I realized I was writing a book. I sent my early writing to Susan. We began e-mailing back and forth.
< My Thoughts > Susan Senator wrote The Autism Mom’s Survival Guide. An extended review appears on my website.
29% She was writing a book called Making Peace with Autism. Susan is a member of “Team Neuro Diversity,” while I am a member of “Team Curebie.” I think autism is treatable and she believes in taking educational and behavioral steps to help our children and to teach acceptance. We have learned from each other.
33% Meanwhile, 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% A few months later…came an e-mail message from J.B. Handly…”Hi, Kim. Would you call me please?” J.B. Handly, the co-founder of Generation Rescue, an organization devoted to preventing and curing autism…wants to talk to me?
< My Thoughts > “J.B. Handly, the co-founder of Generation Rescue…”
Generation Rescue website address is www.generationrescue.org/
36% “Kim…I’d like to start a news site for the autism treatment community, and I’d like you to design, launch, and run it for me. What do you think?”
“Me?” “Yes, you.” “I want three things. One: original content, two: links to news the mainstream media isn’t covering, and three: to be indexed by Google News.” J.B.’s call was a lifesaver…but, I had no staff, zero computer programming skills, and no journalism experience…and three children with autism zooming around the house. I had no idea why…but I was determined to do it.
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.
On June 18, 2007, I launched “The Rescue Post” … which was soon changed on November 7, 2007 to “Age of Autism.” Our original content exploded thanks to the addition of well-known names in the autism and journalism world. Snap!
< My Thoughts > “I launched “The Rescue Post” … which was soon changed on November 7, 2007 to “Age of Autism.” The website address for Age of Autism is www.ageofautism.com/
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 informed parental consent…”
I feel that I would be remiss if I didn’t include at least one journal article on this subject. Barraza, et al. (2017) cite… “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.”
“The 2014-2015 measles outbreak spurred policy discussions regarding vaccine requirements and exemptions. During the 2015 legislative session two states, Vermont and California, passed legislation that made it more difficult for parents to seek exemptions from mandatory vaccination requirements.” “The legislation in California (Senate Bill 277) removed the state’s philosophical exemption and religious exemption. Students entering daycare or school for the first time or advancing to seventh grade, except for homeschooled students, must now receive all mandatory vaccinations in order to attend school in the state, unless they have a medical reason for not doing so.”
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 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 devoted to teaching children on the spectrum.”
Teachers in today’s general education classroom must be able to teach and reach ‘all’ students. Many times he or she will be the first to identify learning disabilities or those students struggling with learning deficiencies. Hopefully, the child can then be brought to the attention of those who can develop interventions, or can recommend a team approach. Thus, moving the child on instead of leaving them floundering in an overcrowded general education classroom with the lone classroom teacher.
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.
< My Thoughts > “Will they live under our roof until we’re old? Will they find a shared community home with support? I don’t know.”
In many states, schools start children with special needs on a Transition Plan to be implemented in the last years of public schooling. Special Education students can attend school until age 21 years. Look into how your state implements these plans. Some start as soon as the child is identified in the system. What that may mean is that the child learns the life skills as well as the academic skills they will need after the public school program ends and their life in the community begins.
Of course as with any plans…there’s good news and bad news. The good news is that students are put on a special track which supports their abilities and talents and this should be evaluated every few years. The bad news is that if future evaluations don’t occur and the child either progresses or regresses beyond the initial plan, then the outcome may be drastically different.
For example, I have had students who would not have been put in computer classes because of much earlier evaluations. But when they hit middle school, for whatever reason, their brain and hand-eye coordination had improved to the point where learning to keyboard on the computer was very doable and very necessary for their success.
As a special education teacher, I would offer the computer at the beginning, the middle, and the end of each semester. I didn’t always write it as an instructional goal, but I had a small and very coveted computer lab in my classroom where the opportunity was always available.
I also invited students to dictate their stories, and eventually their essays to me while I typed them, so that they could get a feel for how keyboarding could extend their independence. This can be integrated with Letterboard skills and with assistive technology which is available on all ability levels, from voice activated systems to Braille keyboards, and everything in between.
92% There is good news on the horizon for everyone with autism. After starting a chapter with poop, I want to finish up with the fresh scent of a rose.
There is a study underway at Beth Israel Deaconess Hospital and Harvard Medical School where they are altering the plasticity of brains and ameliorating the negative symptoms of Asperger’s. That’s a hoity-toity way of saying, “They are getting better!” this therapy is called TMS, short for Transcranial Magnetic Stimulation.
< My Thoughts > “There is a study underway…”
Oberman, et al. (2015) tell us that “We urgently need valid and reliable biomarkers for diagnosis and effective treatments targeting the often debilitating symptoms.” They go on to say that preliminary data suggests promise for (TMS)Transcranial Magnetic Stimulation, but that there is yet to be conclusive support for the clinical wide use of this method, either diagnostically or therapeutically.
In this article, they do cite a report of one adult person with Autism/Asperger who claims that after treatments, she found eye contact ‘less uncomfortable’, social situations, ‘more natural’ and that she didn’t have to think so much of what to say. She felt ‘increased capacity for empathy and was more aware of when she might be making others feel uncomfortable. Her family also noted those changes in her behavior. They conclude by saying that they ‘restrain their enthusiasm’ until more studies can be done.
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 Kim’s Book
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References used in < My Thoughts > are:
Barazza, L., Schmit, C., Hoss, A. (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.
Oberman, L., Rotenberg, A., Pascual-Leone, A. (2015). Transcrainial Magnetic Stimulation in Autism Spectrum Disorder; Journal of Autism Developmental Discord; 45:524-536.
Zamuner, T., Fais, L., Werker, J. (2014). Infants track Word Forms in Early Word-Object Associations; Developmental Science; 17:4; p 481-491.
Links:
Age of Autism… http://www.ageofautism.com/
Generation Rescue… https://www.generationrescue.org/
