Exponentially Autistic
While our child is on the severe end of ASD (Autism Spectrum Disorders), we understand that Ricky’s life may not mirror all of the traits that are found across the spectrum. Still, the closer a child is to the ‘severe’ end of the disorder, they often share many similar issues. Challenges abound when you realize the fullest impact of having a child with severe autism.
There frequently come times when parents will have some very difficult decisions to make. How do you raise a child that is so disconnected? I can say this, you will find the strength and patience that maybe you never imagined you had. You bond with them in ways that are different than normal children, and you quickly realize they are very pure-hearted. These children can be so huggable when they are in peaceful states of mind, yet when something is amiss in their lives, their reactions may range from mild evidence of discomfort (ie. grimacing, crying, pacing, unusual self-stimulatory behavior, etc.) to uncontrollable outbursts.
Ultimately as parents, many will do everything within their power to try and remain their child’s lifelong care provider. The hard reality is that this isn’t always possible. Actually, it’s most often not possible, as we’ve personally found. As parents we’ve found it is difficult to transition from lifelong care providers to care managers. Seeking a more appropriate alternative became the goal. Making the transition proved to be quite an emotional challenge. As conservators and advocates, dealing with what turned into a three year battle for appropriate services is what ensued. We succeeded. We have helped our family and have helped others. We intend to continue this help through California Autism Advocates, a company we established for advocacy of the rights of the developmentally disabled.
