In Their Own Words: Turning Tragedy into Hope
By Laura Walsh
Editor's note: The opinions expressed herein are those of the author exclusively.
By Laura Walsh
Editor's note: The opinions expressed herein are those of the author exclusively.
My son Jason, a beautiful baby boy with crystal blue eyes, was born on July 9, 1997. By about 16 months, we noticed rapid changes in Jason; seemingly overnight, he stopped speaking and no longer wanted to look in our eyes or engage with his siblings Danny and Courtney.
I left my career so that Jason could get full time wrap-around services in the home. Although Jason went through four years of intensive therapy and attended The Watson Institute at age five, he still made very little progress. I wasn't looking for a miracle. We just wanted
I left my career so that Jason could get full time wrap-around services in the home. Although Jason went through four years of intensive therapy and attended The Watson Institute at age five, he still made very little progress. I wasn't looking for a miracle. We just wanted
Jason to be safe and do what we could to let him reach his full potential. I knew Jason would always require constant care – that never worried me. As my husband once said, "We are a family and every family is different." My husband's words were simple, yet so very true. Jason fit right into our family. He had his own unique personality, as did our other two beautiful children. We would do what needed to be done to take care of him.
My oldest son, Danny's maturity and love for his brother always left me awestruck. Even our daughter at two years old sensed that Jason needed extra help. She would run out to the school bus when he arrived home from school and try to help Jason down the stairs of the bus. It didn't matter that he was three times her size and did not need any assistance. He could walk just fine. Danny would rifle through Jason's book bag, pull out all of the papers that Jason brought home for the day and run to the refrigerator, often hanging them over his own accomplishments.
Jason died tragically just before his sixth birthday on May 9, 2003. He was being treated with steroids and after being weaned too quickly developed adrenal shock. When they revived him it caused ARDS (acute respiratory distress syndrome). Jason was on life support for two and a half months until he later died in our arms. Ironically the following year Mother's Day fell on May 9.
I can't express the void that Jason's passing left in our family's lives. I know how challenging it can be to raise a child with autism; however, life without Jason is unlike anything I can explain. Only a parent who has lost a child can remotely understand. We realized that Jason had become somewhat the center of our family unit. We all joined forces to make sure Jason was safe and had what he needed. When he died, our family unit had a big "Jason" void right in the middle. I think the only thing that kept me hanging on was seeing the pain in my husband and children's faces. I knew they had to grieve but I also knew that they needed to resume their normal everyday lives to cope with this tragedy.
I know that my ability to even speak about this tragedy comes from the support of family, and more importantly, the strength that God gave to a mother who thought she may have no more to give. I just remember telling myself that my children needed their mother, and my husband needed his wife. I did not want my children to grow up and one day say that when their brother died, they lost their mother too. I needed to be strong.
I also believe that every parent out there who has a child with autism has been chosen by God to help these special children. My husband and I have met some of the most amazing people through our son Jason.
Jason's brain was donated to the Autism Tissue Program and was one of the first to be donated to this cause. I truly believe that we will see a cure in our lifetime. In fact, to quote the words of my son Danny when we told him about Jason's participation in the Autism Tissue Program, he stated with the utmost confidence in the world – "I know Jason is going to be the one to find the cure for autism, mom, I just know it!"
The Autism Tissue Program (ATP), established in 1998, is a parent-led post-mortem brain tissue donation program dedicated to autism research. Learn more about participating in the Autism Tissue Program here.
My oldest son, Danny's maturity and love for his brother always left me awestruck. Even our daughter at two years old sensed that Jason needed extra help. She would run out to the school bus when he arrived home from school and try to help Jason down the stairs of the bus. It didn't matter that he was three times her size and did not need any assistance. He could walk just fine. Danny would rifle through Jason's book bag, pull out all of the papers that Jason brought home for the day and run to the refrigerator, often hanging them over his own accomplishments.
Jason died tragically just before his sixth birthday on May 9, 2003. He was being treated with steroids and after being weaned too quickly developed adrenal shock. When they revived him it caused ARDS (acute respiratory distress syndrome). Jason was on life support for two and a half months until he later died in our arms. Ironically the following year Mother's Day fell on May 9.
I can't express the void that Jason's passing left in our family's lives. I know how challenging it can be to raise a child with autism; however, life without Jason is unlike anything I can explain. Only a parent who has lost a child can remotely understand. We realized that Jason had become somewhat the center of our family unit. We all joined forces to make sure Jason was safe and had what he needed. When he died, our family unit had a big "Jason" void right in the middle. I think the only thing that kept me hanging on was seeing the pain in my husband and children's faces. I knew they had to grieve but I also knew that they needed to resume their normal everyday lives to cope with this tragedy.
I know that my ability to even speak about this tragedy comes from the support of family, and more importantly, the strength that God gave to a mother who thought she may have no more to give. I just remember telling myself that my children needed their mother, and my husband needed his wife. I did not want my children to grow up and one day say that when their brother died, they lost their mother too. I needed to be strong.
I also believe that every parent out there who has a child with autism has been chosen by God to help these special children. My husband and I have met some of the most amazing people through our son Jason.
Jason's brain was donated to the Autism Tissue Program and was one of the first to be donated to this cause. I truly believe that we will see a cure in our lifetime. In fact, to quote the words of my son Danny when we told him about Jason's participation in the Autism Tissue Program, he stated with the utmost confidence in the world – "I know Jason is going to be the one to find the cure for autism, mom, I just know it!"
The Autism Tissue Program (ATP), established in 1998, is a parent-led post-mortem brain tissue donation program dedicated to autism research. Learn more about participating in the Autism Tissue Program here.
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editors@autismspeaks.org.
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