Caleb and Noah were diagnosed with severe Autism on their 3rd birthday in 2015. We love our boys to the moon and back and much, much more but we do NOT celebrate their Autism.
Autism is a behavioral diagnosis diagnosed by observing a set of symptoms and in our case, a very debilitating chronic life-long condition with many underlying root causes and comorbidities. The romanticizing of this debilitating condition does a huge disservice to families like mine as we are encouraged to “accept” our new life full of struggles and left to fend for ourselves when it comes to researching and paying for treatments that we believe will improve our children’s lives and help them to thrive. Since the conventional medical field is stagnant and immobile in their research on the condition and paralyzed from progressing because they cannot make up their mind on what it ACTUALLY is and the causes, families like mine are neglected, ostracized, and often gaslighted for wanting to improve our children’s lives with biomedical treatment.
Some of you who have followed our story from the beginning know that we dove right into treating our boys holistically, starting with diet, removing toxins from our environment, and experimenting with holistic treatments. We have had so much success and progress from some of the things we have done and our boys have many good days but also many difficult days. Autism for us is not what you see on the media or in “The Good Doctor”. Many times it is hard to see a light at the end of the tunnel when all we want for our boys is for them to be able to be independent, communicate, and live their best lives. Many of you may have seen when we went through some of our darkest days, where we had terrible issues with sleeping and severe self-injurious behaviors. Many of you may also know we have recently been struggling with daily poop smears… Their diagnosis has changed the way we live our lives completely. It is difficult for us to get out of the house or to go anywhere in public. We can’t just go hang out at a friend’s house leisurely and let our kids play or go to a restaurant and enjoy a family dinner. Attending family parties or friend’s barbeques leave us withered and exhausted. If we do attempt to go out, we have to be more than adequately prepared, which is extremely exhausting and time consuming, and even then it doesn’t always go as we would hope. We struggle with constant meltdowns and lack of communication. We are constantly spending money to safety proof our home, which is getting harder and harder to do the older they get and with some of their destructive behaviors. Despite all these challenges, we continue to strive to improve their lives and help them become independent so that when we die, we can feel reassured that they will be okay… One of the greatest fears of an Autism parent.
The purpose of biomedical treatment is to optimize the physiological factors that impact brain function and development. These include nutrition, metabolic status, immune function, environmental factors, and others. “Biomedical treatments address issues in system functions including gastrointestinal disorders, immune system dysregulation, metabolic and genetic abnormalities, and nutrition-based disorders affecting brain function and inflammation. While western medicine is necessary to treat many complex medical comorbidities, biomedical treatments focus more on environmental effects on the body that can also exacerbate the severity of Autism symptoms. They examine both the internal and external environment to identify causes of symptoms which may indicate the presence of underlying illness or disease.” - SHERI MARINO MA, CCC-SLP, FORMER DIRECTOR, PEDIATRIC HEALTH INITIATIVES
For the past four years, we have paid out-of-pocket for many blood tests, holistic treatments, etc… since none of these tests are covered under insurance for Autism. We have found out a lot about their underlying medical conditions that contribute to their behavioral diagnosis of Autism and have tried to implement our own protocols based on our own research from their test results, which families like ours are often left to do. It can get extremely costly and strenuous on our family and frustrating when we don’t know which direction to go.
This past January, we finally decided we needed to invest and seek clear and individualized direction from an expert who would guide us on our biomedical journey and treat the boys individually and specifically. We have been so happy with our new doctor and are committed to following our given treatment plan for a minimum of a year, which may include further testing, supplements, and potentially planning to purchase a HBOT for our home. This has been and will continue to be extremely taxing on us financially but we desire to see this through. The older the boys get, the more time we lose. We came across this health campaign, which supports CAM treatment in an honorable way and are reaching out to our community for support.
Our funding goal is aimed at the estimated costs we expect to incur within the next 5 months. The fund will be used towards our doctor’s visits, supplements, methylB12 injections, further testing, organic food, and other miscellaneous recommendations from the doctor and authorized uses within eFundYourHealth campaign. This funding will bring enormous relief to our family and the daily stressors we encounter as well as healing for our precious boys. We will be so grateful for you to consider being a donor to their healing journey.
Alexandra (mom), Carlo (dad), Caleb&Noah