By Jill Hornig – Autism… ADHD… Asthma… Allergies. Just one of these words can disrupt a mother’s preconceived ideas of how she will raise her child(ren), of what life will be like, of how things will be. I (and my children) am living with all of them.
Among my three kids, I have 3 with seasonal and environmental allergies, 2 with autism spectrum disorders, 1 with asthma, 1 with ADHD, and 1 with life threatening food allergies. There’s no Partridge in a Pear Tree, but I am not sure I could handle that one more thing (and someone would almost certainly be allergic, both to the bird and the tree).
Neither my husband nor I have a family history of autism, asthma, or food allergies. This is not what we had planned. This is not what we signed up for. This is not how it was supposed to be. And we’re not the only ones. In fact, we are just one family of millions walking this path.
This is not what we had planned. This is not what we signed up for. This is not how it was supposed to be.
Beth and her co-founder Michelle Tortora established Epidemic Answers in response to their personal experiences raising children with chronic illnesses. Along with an extensive team of experts, they are working to change the way we view these epidemics, while also looking for answers to reverse the trends.
In pursuit of their mission, the organization recently launched the Documenting Hope film project – 14 children, 18 months, 1 goal: Recovery. The project follows 14 children who have autism, ADHD or other conditions. It brings multidisciplinary teams of medical practitioners together with families to create individualized treatment plans, along with support networks to help families implement lifestyle changes. Throughout the process, the team is studying and documenting the results in order to create a model for improved health outcomes for children affected by these chronic illnesses.
Beth asked for families who would be willing to help film a trailer for the project. I was intrigued by the theory of the film and research, and offered my home, my child and me. Although we didn’t make the final cut, I am proud to have been a part of this revolutionary endeavor.
However, it needs to be said that although I support research and finding potential answers for these illnesses, I also have my trepidations. In particular, when it comes to using words like “cure” or “recovery” when talking about Autism, because there is no consensus on what causes autism. Implying that it is a disease to be cured is fraught with emotional implications, both for families of children with autism and for the children themselves.
Even a casual search of the internet reveals how polarizing using this language can be, particularly for the generation of teens and young adults with autism spectrum disorders, who have come to love and accept themselves as they are, with all of their neurological differences.
I do believe that Beth and the Documenting Hope project approach the concept of “recovery” sensitively and optimistically. Clearly, something in our society is not working. Whether it’s the myriad of chemicals in our daily lives (from plastic dishes and shower curtains to soaps, shampoos and cleaning products), the unrecognizable food ingredients that require advanced degrees in chemistry to recognize (have you read the ingredient label from a cake mix or box of cereal lately?) or something we have not yet discovered, I have to believe that they are on to something.
While the millions of research dollars to find a cause (for autism, for food allergies) may help in the future, those dollars won’t change my daily reality. But finding an approach to reduce symptoms, to reduce suffering, to reduce the burden on my children’s bodies? That really does give me hope.
At the very least, Beth and her team’s research has reinforced for me that the changes I have already implemented for my family might do some good, and they surely can’t hurt.
Jill with son AJ and his service dog Regis
As my children have gotten older, they have outgrown some of their worst seasonal and environmental allergic symptoms. They have outgrown their worst asthma symptoms. We still live with autism, ADHD and food allergies, and probably always will. But with this project, maybe my grandchildren won’t have to weather those challenges.