Every time I open the blog to write I draw a blank. I thought we were over the hump, but God has other plans. But, Isn’t that always the case? After Robbie’s surgery, everything went pretty much as medically planned. It was a successful surgery, the tissue from his foot was sent to Washington State University for genetic testing and it was confirmed that their is a PIK3CA genetic mutation. This gene is known to be associated with overgrowth. The good news: it’s not hereditary, which means that his kids won’t be at risk of having the PIK3CA mutation. He received "The Hulk" prosthetic a few weeks after his 2nd birthday in March. He adjusted to the "The Hulk" well and within less than 24hrs he was running a havoc. Lol! No surprise there. Right? The weeks to follow were great, beginning of April we returned to Shriners Children’s Hospital for a week of inpatient physical therapy. Following with outpatient physical and occupational therapy in Hollister, our home town, immediately after. During his outpatient assessment, the occupational therapist began to ask me about Robbie’s behaviors and his social interactions with his peers. She asked me to keep tally of all sorts of behaviors (aggression, response to sensory overload, spinning, flapping of his hands, running in circles, spinning, to name a few.) I didn’t think anything of it, but we started to notice his aggression towards others worsen, we found him behind our coaches banging his head against the wall a few times. I didn’t think anything of it, he’s a 2 year old little boy for crying out loud. He is suppose to be rough and touch, climb and jump, rambunctious and mischievous. During one of his physical therapy appointments they noticed that he was not able to regulate his energy and calm himself down. It seemed the more excited he got, the worse his behaviors became. During his therapy he often sought tight hugs and would presses his little head against my body to be able receive the appropriate sensory input to be able to calm down. To feel some kind of relief. They decided to send a referral to have him evaluated and assessed for sensory processing disorder, something that has to do with proprioceptive and body awareness. The literature they gave us about this disorder seemed to fit him to a “T” Fast forward to the evaluation: the two ladies conducting the assessment were very impressed with Robbie’s development in vocabulary, his humor, friendliness, and his no care in the world attitude. We knew that because of the over growth and prosthesis, he would be needing more assistance and training in the gross motor area such as learning how to utilize and walk with his prosthesis. What we were not expecting was a phone call the next day. The San Benito County Office of Special Education would be sending their findings over with a referral to the San Andreas Regional Center for further assessment and possible in home services. The Office of Special Education shared their concern of Robbie being at risk for Autism.
Say what? At risk? I know that the Autism Spectrum is pretty broad, but a child is not at risk for Autism. Either they meet criteria for Autism or they don't. So NOW WHAT? Besides his orthopedic challenges, will he be the 1 child of every 68 statistic?. So ..... the wait begins.