By Anne Dachel
Autism is talked about all over the place today, and with good reason since, according to one statistic, more than two percent of children have the disorder. Every April, the whole world lights up places in blue in a call for awareness. There are even those who celebrate autism having coined the term, “neurodiversity.”
News reports on autism may include a 30 second clip of typical looking kids interacting with therapists or happily climbing on playground equipment, but we rarely see how autism impacts every member of the family. The heartbreak does not stop with the parents. Grandparents, aunts, and uncles also share in the dashed dreams and exhausting search for answers when a child descends into autism.
The media doesn’t report on the emotional and physical toll autism takes on parents. Rarer still is any coverage of the role of the extended family members. That’s why I’m excited to talk about the book, Revolutionary Grandparents, which highlights what these people do to support parents and even take on the role of fulltime caregiver themselves.
There are nineteen stories in Revolutionary Grandparents. They’re personal and moving. I have highlighted five of them for you.
“Yee Haw” Hope and Healing across Generations, by Kathryn Heck p. 65
Kathryn Heck is the “Revolutionary Aunt” who’s been there for her nephew Matthew and his mother Terri. Kathryn herself suffered in the polio epidemic of the 1950s and as a result experienced “years of physical therapy, surgeries, braces, and a fear of needles.”
Then Matthew became part of another epidemic. There’s no doubt about the cause, as Kathryn writes, “Matthew showed the first signs of damage after his four-month vaccinations, but it would take four years for him to receive an official diagnosis of autism and be on his way to recovery.”
The “damage” as Kathryn described it, was his constant screaming, inability to sleep, nurse, or tolerate formula.”Tantrums and aggression would become the norm. He would be fine one minute and then, out of the blue, start throwing anything he could find and knocking things over.” As Matthew grew, he became obsessed with certain objects and failed to develop speech.
Terri was told by doctors that her son’s autism was genetic and that there was nothing she could do about it, but she wasn’t willing to settle for this kind of marginalizing. She researched therapies and diet to help Matthew, and she had her aunt there for support. They found the right doctors for Matthew and he was given supplements and biomedical help.
“After starting biomedical treatments, Matthew easily transitioned from the autism classroom to an integrated one. His language skills exploded.”
Seeing the changes in Matthew, even skeptical relatives came to realize that alternative treatments really work, and autism wasn’t a life sentence. Kathryn described the improvement in her nephew like this: “Matthew plays two instruments and reads voraciously. He has developed social skills (he’s a Boy Scout) and is a gentle, funny, and kind child.”
Kathryn told me, “Matthew is now in 7th grade and has been released from all services, he is thriving being homeschooled.”
Kathryn has never given up hope and that’s what she wants readers to know. She has advice for families dealing with autism: “My message to those reading this book is to get involved. There is so much you can do, even if it’s only giving mom and dad a break for a couple of hours. Their lives are filled to the brim, so the kids can use your help. Your family may not ask for help; you just have to jump in and offer it. Don’t be afraid that you don’t know everything….”
Kathryn believes things need to change. She sent me this comment:
“I think the medical profession needs to be more open to other types of medical options in treating these children. They need to work together to recognize how vital diet, supplements, and therapies are to recovery. They need listen to the parents, since they know their child best and don't assume all health issues are a part of autism. Mostly, when working with these kids, they need to explain to them what they’re doing and why because inside we’re all scared.”
Judy and her grandson Kale
Michigan grandmother Judy Smith writes about what it’s like to have twin grandsons Kale and Jaden, born full term and healthy. She witnessed Kale’s regression, his loss of eye contact, the beginning of his stimming and lining up toys, his lack of speech development. Then came the diagnosis of autism—Judy’s call to action.
“As Kale’s grandmother, I looked into that little face with the beautiful brown eyes, and I swore that I would be there for him.”
Kale was fortunate. His parents and grandparents devoted themselves to his recovery. Other relatives were also there for them. They turned to biomedical treatment and they saw improvement. “Kale learned to communicate with some words. It was such a joy every time he used a new one. We were finally able to understand what he was saying or trying to say. A lot of other new things were coming up: diet changes, sign language, supplements, communication devices, practitioners, swimming lessons, horseback riding therapy, adaptive swings—and that just the tip of the iceberg.”
When conventional medicine failed to help, Kale’s parents looked into homeopathy. When school caused anxiety, they homeschooled him. Along with the hard work, the rewards have been real. “Kale is twelve years old now. There have been many layers of triumph, despair, joy, disappointment, and happiness. It is often the little victories that mean the most. Kale has them often. It is important to remember that through it all, Kale will have experienced hardship, but also great joy and happiness, and that his life is uniquely his.”
And after years of work, finally at age twelve, Kale began to talk. “Hearing his voice is one of the most beautiful sounds for all of us.”
Judy’s advice to others: “To all families who are just starting a similar journey, I would say, don’t lose heart or hope. Just focus on one day at a time. Hold onto each other and reach out when you feel you can’t go on anymore. Family and friends will pick you up and support you until you can stand alone again. It is hard to let people in, for if you do, you show them the depth of your pain. That is very difficult, but it is worth it.”
Rembrandt: What’s on Your Resume? by Victoria West, p. 111
Victoria makes it clear: autism is a manmade epidemic. Her grandson had all the recommended vaccines starting at birth, continuing at two months, and his health was compromised. “That’s when the first of the ear infections came. Colic continued, and he still needed a lot of holding and rocking. He didn’t babble. He didn’t make eye contact. DTaP, IPV, COMVAX, and PCV7 were all given at four months. His mom struggled with breast feeding, so we tried soy formula supplements. Many ear infections, many antibiotics, chronic diarrhea, he struggled to sleep and was miserable when awake. Doctors were useless.”
The shots continued.
“August 2003. Kiddo is fourteen months old, and he is given that MMR and chicken pox vaccine—while having yet another fever. …He gets the MMR twice actually, on the day of the fever and again the next time he is brought in to check his ears because no note had been made of the first one. It’s all over at this point….” At twenty-four months he is diagnosed with autism.
Victoria cared for Kiddo because her daughter had to finish school and go to work. She also worked to heal her grandson. She did the research and attended conferences. Kiddo improved with a special diet, supplements and hyperbarics.
Victoria learned about the genetics that set Kiddo up “to being unable to handle everything the world throws at him.” She doesn’t believe vaccines are the only cause of autism. “They are the trigger on the loaded gun, no question, but our guy came into the world poisoned by mercury. His mother had dental work done while she was pregnant. …In short my grandson was affected by a lot of factors, from the accumulation of toxins from all sides of the family and the increasingly toxic environment to the decrease in crucial natural vitamin D and essential nutrient intake.”
This is her message to other grandparents out there:
“Your children NEED you. Your grandchildren NEED you. They need sleep when they are exhausted; they need someone to do the laundry. They need someone to the dishes, cook, and pack the freezer. They need a weekend away here and there. They need a safe place to leave their children for a few hours as often as you can manage—every week if possible. They need you to call and ask what they need from the store when you are out running errands to save them a trip. They need someone to help them read and remember the research, someone to partner with at conferences, someone to go with them to the doctor and lab appointments and pay attention to the information being given.
“They need you to not be a wimp!”
Tiger Lily: Song of Sweetwater, by Maurine Meleck p. 139
Maurine Meleck had to become both mother and grandmother to her grandson Joshua. He’s soon going to turn eighteen, and for most of those years, Maurine has been his sole caregiver. She talks about Joshua’s birth: “He was healthy, the essence of perfection in our eyes. However that euphoria was short-lived.”
Joshua became more and more chronically ill. He came down with reflux, persistent diarrhea, and sleep problems. Then there was pneumonia, ear infections, and asthma. As Maurine writes, “Josh was put on antibiotics for 151 days of his first year.” Despite all the sickness, “he never missed any mandated vaccinations.”
Josh showed all the signs of autism. His behavior became rigid and repetitive, and hyperactivity settled in. While all this was happening, Maurine was researching. She learned about regressive autism and how vaccines can trigger it. She threw herself into recovering Josh through biomedical treatment, diet, and ABA therapy, and he’s come a long way, thanks to her efforts. “Josh is now in the tenth grade special education class. He loves swimming, baseball, bowling, his laptop, and GF/CF chicken nuggets.”
Maurine remembers to take care of herself, knowing that Josh needs her to be healthy too. “I exercise by walking every day, seek out social activities, and maintain a nutritious diet. It’s difficult at times because my inclination is always to put Josh’s needs first, and I like to say we are both a work in progress.”
Maurine also wanted to thank her sisters, Nancy and Gail, for the years of moral support they’ve given her as she raised Josh. Sometimes just having someone to listen can mean everything to a person with an autistic child to care for.
Maurine talked to me about the impact autism has had on her life.
Peaches: Autism Highway, by Sandi Marcus p. 157
Sandi and grandsons Gabriel and Aidan
Sandi Marcus talks about what it’s like to have identical twin grandsons, Aidan and Gabriel, with autism. The family thought their toughest battle was the three months the boys spent in NICU at birth, but autism changed all that. Sandi is quite close to the two because her daughter and the twins live with her. She’s devoted herself to their recovery using biomedical treatments. And it’s not easy, as Sandi writes, “Most nights when I am so exhausted and frustrated, all I have to do is look into those beautiful eyes and somehow my strength is renewed to fight another day.”
When doctors held out no hope for the boys, Sandi began to research. Despite dealing with heavy problems like a foreclosure on her house, Sandi persevered. She learned about vaccines and autism and the benefits of a GFCF diet. And it wasn’t easy: “It took seven years and several hundred thousand dollars, but we can finally go out in public.”
Sandi isn’t going to stop. “I travel along that expressway called autism. Autism came into our lives by injection, autism that we have fighting, autism where hope is alive. Aidan and Gabriel are the bravest little souls I know, and they are living proof that recovery is possible. Maybe we haven’t gotten there yet, but we are on the right expressway.”
Relatives can be deeply affected by autism. Sandi’s role as a mother and a grandmother has been “forever altered because of this journey. The way I view life has been changed forever. And yet, I’ve grown in a way I never imagined, and I have become stronger and more knowledgeable about autism than I ever thought possible.”
I asked Sandi why she was willing to be a part of Revolutionary Grandparents.
“My decision to ‘bare me soul’ in Revolutionary Grandparents was one not taken lightly. My hope was to encourage other grandparents to step up and be more involved advocating for better laws to help our grandchildren. Autism affects 1 in 17 grandparents! We have a big voice with our lawmakers as we work together for the many needs of our loved ones experiencing autism face over the course of their lifetime.”
It clear from the accounts in this book that mainstream medicine doesn’t have answers. Normally developing babies suddenly regressing into autism don’t matter to doctors, as shown in lives of these children. Yes, autism is a puzzle, and families have to find the answers on their own. The relatives who step forward and get involved in caring for a family member with autism take on a vital role. Much of the progress these children have made is due to their efforts. That makes them real heroes. The writers here hope their stories will inspire others to get help out relatives dealing with autism.
Revolutionary Grandparents is a book about sharing in the struggle, but most of all, it’s a book about hope.