FIGHT AGAINST AUTISM   

-A note from Josh’s Dad

In 2002 I lost my first wife and 7 month old daughter in a car accident. The only surviving member of my family was my son Austin and he was left with Traumatic Brain Injury. Austin was in a coma for about two weeks in the ICU and spent 4 ½ months in the hospital. Austin had to relearn how to walk and relearn how to talk. His right side of his body is significantly weaker than his left and he suffers from ataxia (involuntary shaking). After almost losing Austin I was grateful for his life, but it was still difficult to deal with the fact that my little boy that would jump off the top of the jungle gym in the backyard is now my little boy that will forever require assistance in life and never be completely independent. Though it has been difficult in many ways, we thank god everyday for Austin.

I was lucky enough to have a second chance at life when I married Bobbi. Bobbi and I decided that we wanted more children. Austin’s situation magnified the excitement of raising a “typical” child since so many things with Austin had been so restrictive due to his disability. In March 2005 we welcomed Josh to our family. At first it was as anyone would expect – little sleep, mom felt like a feeding machine and we loved all of it. As we made it through the infant stages we looked forward to his personality blossoming and experiencing his developments as he grew. However, at about 15 months we noticed that he wasn't hitting his milestones (talking, gesturing, interacting, etc) our joy turned to worry and our journey into the world of Autism began. At this point Bobbi was pregnant again. Instead of the excitement and joy of adding to our family, this pregnancy was overshadowed much of the time with anxiety and worry of how the baby would be. In September 2006 we welcomed Blake to the family. The first months of Blake’s life were filled with worry and unfortunately our worries came to be reality once Blake started to show the same delays as Josh. Blake was officially diagnosed with Autism in October 2007 Josh was officially diagnosed in March 2007. After Josh & Blake were diagnosed, I also realized that Austin did many of the similar “Autistic” like behaviors prior to the car accident. But because of the Traumatic Brain Injury it was hard to see any of these behaviors now. Bobbi and I took this information to our neurologist appointment and Austin was given the dual diagnosis of Traumatic Brain Injury & Autism. We grieved the news, but it also fueled us to know that with intensive early therapy and intervention kids could become indistinguishable from their peers (or “recover” from Autism).

Bobbi's plans of slowing heading back to work were replaced with what could be two full time jobs as an "Autism Mom" (researching & studying ABA & Bio-Medical, studying the state and federal laws that impact our family, fighting government agencies fight with our healthcare provider and all the stuff that comes with that).

We as parents have been very aggressive in treating Josh & Blake and getting them on the road to recovery. By intervening so early and implementing a biomedical program, adjusting their diets (Blake is on the GFCF diet and Josh is on the SCD and GFCF diets) and starting A.B.A. Therapy we have significantly increased their chances of recovering from Autism.

In the middle of our fight to get Josh & Blake recovered, Josh’s funding was unjustly cut by the agency that was funding his ABA Program in March 2008. We are currently waiting for our day in court to fight to have Josh’s funding reinstated, but until then we are paying for Josh’s ABA Therapy program which costs over $11,000 per month. Bobbi not going back to work alone impacted our finances. This combined with paying a lawyer to fight for our kids, self funding Josh’s program and part of Blake’s program, our grocery bills quadrupling to accommodate Josh & Blake's SCD/GFCF diets, the cost Josh & Blake's bio-medical and the costs of many tests and medical procedures has put us in a very difficult position.

We continue to fight to find resources to fund Josh’s ABA program and we are leaving no stone unturned. We have hit a stone wall with our health insurance (it turns out that the policy specifically excludes Autism coverage and because the policy is self funded state laws that generally would help us do not apply) As I mentioned before we are in a legal battle with the funding agency to get Josh’s funding reinstated and we are also trying to work with our school district to gain appropriate services for Josh. We truly have exhausted all of our resources and are forced to open our lives and our situation to all, in hopes that there are angels out there that are willing to help.

There are many hardships that I could spend hours going through, but I would rather focus right now on “the light at the end of the tunnel”. This light I speak of is RECOVERY. We can see that light for Josh & Blake. They both have come so far. Initially we though that we would never be able to communicate with them, that they would have no language. We feared that they would be forever trapped in a state of frustration, confusion and pain. That is the furthest thing from reality. They are thriving in their programs and each has probably 1 – 2 years left. It is amazing to see them breaking the chains of Autism each day. To be able to hear Josh say “I love you Daddy” and know that he is saying it because he means it, not just repeating it, this brings me to brink of tears each time I hear it. Josh can recover with his current program. He can have the opportunity to live a typical life. The first years of his life were robbed from him by Autism. To know that he can have the rest of his life to experience, explore and contribute to the world as a typical child does, it is the greatest feeling for me as a father. In contrast it is the worst feeling I have ever experienced knowing that Josh is so close and might not recover. Not because there isn’t a way, but because I can’t afford to give him the opportunity. As a father and husband I feel like somewhat of a failure. It is very hard for me to face the fact and it truly breaks my heart that I can not give my family all that they need. Please help us have this opportunity to save Josh’s quality of life, to give him the chance to be a child among other children and the chance to live a typical life. Josh is part of an outcome study that will help so many other children, by proving that recovery is possible. However if we cannot keep him in his program he will not be able to continue in the study. You can not only help Josh and our family, but your help will also continue to go forward to help so many others. Our family is dedicated to helping other families in the world of Autism. Once we have weathered our storm and our situation has become a bit more manageable for us we intend to share our experiences and knowledge we have gained on our journey. However for now our focus is on helping Josh & Blake recover.

-Josh’s Dad

Donations

Donations can be made at any Wells Fargo Bank to the following account:

Fight Against Autism
Account Number 2629008745

Donations can also be made via PayPal

  ***All funds that are raised through events and donations will go directly to Josh's family to help pay for his A.B.A. therapy, biomedical supplements, and medical proceedures. Donations to Fight Against Autism are not tax-deductible for federal income tax purposes.