It’s a Monday in September 2009, and Joshua, my grandson, bolts out of the school door with a fist in the air. I suspect that he’s had a difficult afternoon. Many days he gives me a wide smile and a “thumbs up,” but not today. He hurls himself into my car as quickly as a boot camp escapee. I watch him in my rear view mirror – the short-cropped brown hair, green eyes, turned-up nose, and I grin, knowing that tonight he’ll hug and squeeze me until I can hardly breathe.
As Joshua ages, school often becomes an overwhelming challenge. He’s just turned 12 and is mainstreamed in fifth grade with a full-time aide, a little behind his peers. He reads well, but struggles to understand concepts. It’s a breeze for him doing addition and subtraction, but division and word problems elude him. The socialization process creates untold anxieties for Joshua. He prefers to be home watching I Carley on television or browsing the Internet.
At home after school, he tosses his pencil into the air in defiance of homework. Now it’s my challenge. What began as a “part-time daughter’s helper job” mutated into a full-time caretaker position some years later. A number of circumstances catapulted me into that place. I made the choice, but I also felt I had no choice. Joshua, so sick with autism, needed someone 24/7, and I had the time to give to him. I have never looked back.
I picture that day in August 1997 when Joshua was born. Our excitement was palpable. It was a day of firsts – my daughter’s first child and my first grandchild. The day was warm and sunny, but the months to follow would come crashing down on us like an avalanche of worry and despair.
Although developing normally, Joshua was constantly sick. It began with colic and reflux. Many nights, I would drive him back and forth on the interstate highway until he fell asleep. For the next two years, illness snared his ears, lungs, and gut with merciless frequency. He was hospitalized for pneumonia, asthma, RSV, ear tubes, and removal of his tonsils and adenoids. It is a story that is so familiar. But along with these came antibiotics; in fact, Joshua had antibiotics 150 days of his first year of life. He was also vaccinated. Yet, he passed all of the usual milestones for his age. With every sickness, I would hold him in my arms and pray it was the last. The doctors offered no solutions.
We began to notice subtle changes in his behavior. He was cranky and harder to manage, and he was hyperactive and fussy about what he ate. In 2000, Joshua’s brother, Connor, was born. We welcomed another beautiful baby into the world. Joshua wasn’t as engaged with the new baby as he should have been. However, we set aside our concerns for the time being. No doctor waved a red flag.
Joshua was diagnosed with autism shortly before his third birthday. The doctors casually told us his IQ was below 50, he wouldn’t improve, and we should move to another state because services in South Carolina were poor. A turtle would have had more empathy. I would have felt better if someone had hit me on the head with a hammer. What happened to my loving and adorable grandchild? He was fine, and suddenly he wasn’t fine. My daughter and I were devastated. What we felt that day is inexplicable to those who haven’t been there. We yearned to piece together the ragged photos of his early years.
Life grew increasingly more difficult with Joshua. His speech became echoes of echoes. He either went inward like a tortoise where nobody could reach him, or he became angry and whacked everything in sight or head-banged into walls. Repetition was a constant theme. He ate the same food, watched the same video, and drew the same circle.
When the shock and the crying subsided, it was time to move forward. I bought a computer and learned how to e-mail and do a search – nothing too complicated. Just after Joshua turned 3 years old, I took a Greyhound bus to a National Vaccine Information Center conference in Arlington, Virginia. I think I knew then that my early retirement plans with hopes of travel were now as distant as the Fiji Islands. The crowded conference was my first introduction to the larger autism world. I heard many speakers, talked to families, and watched a video of children who were developing normally but then suddenly were pulled into that tempestuous sea of autism. I sobbed so loudly that I had to leave the room. Before going home, I connected with Dr. Stephanie Cave and Dr. Amy Holmes; this became our first Defeat Autism Now! physician practice. I also phoned my daughter and told her never to vaccinate the children again. We never did.
The hard work began when I returned from the conference. To add to our woes, my daughter and her husband separated and planned to divorce. She moved with the children to a small, rented house. I was also recently divorced and living in a mobile home.
Joshua began 40 hours per week of applied behavior analysis (ABA), fortunately paid for by the state. He also had speech and occupational therapy. We implemented the gluten-free/casein-free diet, which was very significant for him, and started using nutritional supplements. Improvements were slow but steady.
I was trying to learn everything I could about my grandson and autism through the Internet, books, and other affected families. It didn’t feel as if I was doing enough, so I joined some local autism groups. I became active in the Walk for Autism-Augusta, which was in its infancy at the time. This year we held the tenth annual walk, which provides scholarships for ABA and other related services for children in the area. I also became an Unlocking Autism volunteer and attended their rallies in Washington, D.C. Soon, I was able to help other families in my state whose children were recently diagnosed. This gave me a great deal of satisfaction.
Connor was a lovable baby. To our surprise, he also suffered from reflux and gastrointestinal problems. He acquired an ear infection at 1 week old. The hospital said this was highly unusual for his age. Multiple ear infections followed along with many sets of ear tubes as well as the customary antibiotics. Connor was a quiet baby in comparison with Joshua. After the reflux resolved many weeks later, he seemed content to do absolutely nothing except stare at the ceiling lights. We worked hard to engage him in activities. He had darker skin and hair than Joshua and lovely dark brown eyes. I couldn’t resist picking him up all the time and kissing him.
As Connor grew, we watched him like overwrought doctors for signs of autism. Our concerns were not unfounded. At 1 year old, he had virtually no words, and he couldn’t point, clap, or wave bye-bye. Although we had stopped his vaccines at 4 months old, he had still received a number of them. Connor was diagnosed with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified) at 13 months. It was like viewing a rerun of an old movie and again mourning the loss of a part of this child.
The prospect of having two children with this then mysterious illness was daunting. How could we manage all the necessary therapies for both? Again, South Carolina paid for 40 hours per week of ABA for Connor. We added the speech and occupational therapy like his brother had. There were therapists running in and out of the 900 square foot house all day – often two at once. This continued for almost two years. It was exhausting. Connor uttered his first word – “car” – at 15 months old. We felt like we’d won the lottery! Both children were using biomedical treatments, therapeutic diet, and saw a Defeat Autism Now! doctor. Connor, who was also diagnosed with verbal dyspraxia and, later, neurological stuttering, was improving much more rapidly than Joshua. I suspected that this was due to the difference in the number of vaccines they’d each had – Connor having had fewer vaccines.
The watershed of my political involvement occurred on my trip to Washington, D.C., in January 2003. A rally was organized by The Autism Autoimmunity Project, coordinated by TAAP member Jo Pike, who ran the Moms on a Mission for Autism chapter and later found the National Autism Association. We were in Washington, D.C., to protest the surreptitious last minute addition of a rider in the Homeland Security Act that would protect drug companies from responsibility in vaccine injuries (this was nicknamed the Eli Lilly rider). We won (!) as the clause was removed from the bill later that week. This motivated me to continue in local and national advocacy. I joined A-CHAMP (Advocates for Children’s Health Affected by Mercury Poisoning, now called the Autism Action Network). I took Joshua to the rallies outside the Centers for Disease Control in Atlanta and the Green Our Vaccines rally in Washington, D.C. I arranged meetings with my representatives or their staff members. I know that there is always more that I can do.
Connor fully recovered by 4 years old. My daughter decided to return to school to complete bachelor’s and master’s degrees. I offered my full support and took on Joshua’s biomedical treatments myself as well as whatever other therapies he required. Now I would need to rely more and more on the autism community for support, the help from which has been monumental. In 2006, Lyn Redwood, RN, then president of SafeMinds, introduced me to Defeat Autism Now! doctor Julie Buckley, MD (Dr. Holmes had retired). I knew immediately that this person of high intelligence and compassion was someone with whom I could work. We strive to find solutions for Joshua’s short- and long-term problems.
This journey would not have been possible without the support of my online friends. Not only did they educate me on autism issues, but they also listened to my complaints and laughed at my bad jokes. My two sisters, who live far away, provided me with limitless hours of encouragement on the phone. I will forever be grateful to them. When caring for children with special needs, the caregiver needs carers, too.
I’m thinking of a Saturday in September 2009
… Joshua wants to swim in our condominium’s pool, which is still open in late September. A few other children are splashing in the water. I’m happy to see he’s playing a game with them called Marco Polo. He can just as easily turn them off by telling them to stop looking at him. Joshua is much shorter than other 12 year olds. He used to be thin, but now – with an improved diet, he’s gained weight and is muscular. Swimming is his favorite sport, but he’s also adept at running, riding a bicycle, and basketball. Joshua has accomplished so much in his short life. My admiration for him knows no boundaries. When he obsesses over neighborhood church bells or lines up his cars from one end of his room to the other, I remind myself that it’s just part of the continuing struggle to recover him.
Connor is an inspiration. He is an intelligent fourth grader whose questions never stop coming. He tries hard to understand what happened to him and Joshua, and he wants to be a doctor someday.
While I would not recommend my job to other grandparents, I will add that it is not without rewards. To watch my grandchildren develop and grow is a joy. And, although I put my life and interests on hold for some years, I plan to return to writing poetry and painting in the near future. Dr. Buckley once told me that she’ll be happy if she’s invited to Joshua’s wedding someday. As the children like to say, “Wouldn’t that be awesome?”
Tomorrow is a new day.