This is an article written by a mom about her experience having had a child with autism and another child with synovial sarcoma:
The link doesn’t work so I will copy the text:
Michelle: mothering children with autism and cancer
3:00 PM Tue, Sep 21, 2010 | Permalink | Yahoo! Buzz
Nancy Churnin - Reporter Bio | E-mail | News tips
Michelle Hammons writes that she and her husband Dan “have two wonderful boys, Daniel and Jacob. We reside south of Fort Worth on a small farm. I love my family and I enjoy every second of being a stay at home mom.” Please welcome Michelle as she shares her story with the Dallas Moms Blog!
I will never forget the day my son, Jacob, was diagnosed with autism. It was his third birthday, January 13, 2003. Our neurologist diagnosed my toddler with Pervasive Developmental Disorder (PDD) and recommended a lifetime of solitude in an institution. Hopelessness, sadness, despair, and anger were only a few emotions I felt as my husband, Dan, carried our screaming child back to the car.
Why my kid, I thought? Jacob doesn’t deserve this. Where do we go from here? There wasn’t a manual or a how-to book on autism. I did not have professionals or doctors lining up to help my son. We were on our own. From that day on, the Internet became my lifeline and I became an advocate for my son.
The last seven years of my life has placed much emphasis on Jacob’s needs. By far, my oldest son, Daniel, has been the best therapist and best friend for Jacob. He is a patient and understanding older brother and typically doesn’t mind the extra attention Jake needs. All that changed on July 7 of this year, however.
That was the day Daniel had relatively simple surgery on what we had been told was a cyst just the week before. Part of the procedure was to take a biopsy to make sure the surgery was successful and no other action was necessary. Our life returned to normal as we allowed Daniel and Jacob time to catch up on July 4th activities they missed. In the meanwhile, my husband and I anxiously waited for the biopsy report to relieve our worst fears.
A week after the surgery, Dan took Daniel to the doctor’s office for the results while I stayed home with Jake. I was nervous but hopeful everything would be okay. When they walked through the door and I saw the tears in Daniel’s eyes, I knew something was wrong. Daniel had just been diagnosed with Synovial Sarcoma, a rare cancer that affects about 400 children a year. The feelings of hopelessness, sadness, despair, and anger temporarily returned but my experiences with autism have taught me to remain optimistic.
Most incidents of Synovial Sarcoma are misdiagnosed as sports injuries. Daniel’s tumor formed on the outside of his right thigh, started out the size of a dime and grew to the size of a jalapeño. Fortunately, the doctors caught the cancer early and we immediately had a plan of action. Dan talked to the oncologist, Dr. Akers and the orthopedic surgeon, Dr. Gillespie at Cooks (the best doctors in the United States) and Daniel was scheduled for surgery the following week, July 13th.
Daniel was in surgery for six hours after which we were told to wait another week for the test results to come back. Another week of waiting! It was worth it though, as we found out that all margins were clear, his bone scans were negative, and the CT scan on his lungs was all negative. For us, it was a miracle!!! The major surgery that Daniel had gone through was minor to the possible outcomes. Daniel still has to have x-rays and MRI’s every three months, but chemotherapy and radiation were avoided.
As we drove home, I couldn’t help but compare this experience to when Jake was diagnosed with autism. I couldn’t help but wonder what if all childhood diseases were treated immediately upon diagnosis. I understand the urgency and immediate treatment of cancer. It is life or death. And I would not have changed a thing for Daniel. In fact, I feel blessed it was caught early and treated with the urgency cancer requires.
My question is: Is living in an institution for a lifetime not considered a life or death situation? Would you do anything in the world to change this outcome for your child? Why aren’t changes being made and why in this day and age do moms/parents like me still have to fight for services for our children? There should be more opportunities out there for the autism community, but there is not. Yet. Fortunately, awareness of autism and avenues for diagnosis and therapies are increasing and my hope is that someday autism will be cured as quickly as it is diagnosed.
After seven years of living with autism on a daily basis, parents approach me daily asking what they should do with their autistic children. I continue to believe that autistic individuals can be taught at any age, you just have to be willing to spend the time to find what key unlocks their door. In fact, Temple Grandin emphasizes and contributes her success to early intervention. I’ve seen it work and continue to stress that early intervention, regardless of the disease or disorder, can save lives.
September is Childhood Cancer Awareness Month and April is Autism Awareness Month. During these two months, and throughout the year, I will continue to be an advocate for my own children - and for others who need their voices to be heard. I’ve recently been reminded that it is a matter of life or death