And what brings you in?..........

I was supposed to go back to work 2 weeks earlier, however I took some vacation time. Most think it is because I can't bear to leave my sweet Timmy - ( maybe partly true) but really, Robbie had an appointment with a new neurologist and he had dental surgery rescheduled. The neurologist had been called in April to book an appointment. She is someone who was recommended by our Occupational therapist and is in network for us. ( A huge financial benefit.) The appointment had been moved twice and of course it was scheduled on a work day for me. The Dental surgery has been a huge headache. The dentist office has been wonderful. Our insurance company has not. They would not cover the hospital portion of the surgery- only the dental portion. Their reason- "he is not listed as Autistic, therefore it is not medically necessary." After 4 years of claiming benefits for Robbie- Occupational therapy, Speech therapy, Applied Behavior Analysis and social skills - Really???? After speaking with countless call center helpers- and getting a different response each time the dentist office finally got me in touch with a supervisor. The dentist had to submit documentation from our neurologist stating Robbie has Autism and the surgery is medically necessary. Crazy! So- this has been done and weeks later they still have not approved it. Postponed again and again. The neurologist appointment we did have. And what brings you in?- is how it always starts. I explained how we wanted to get back in network, she was recommended, and I have always felt there is something more going on with Robbie in addition to his autism. We discussed his scripting behavior- where he monologues movies until he perfects the pitch and tone of the lines he is reciting. The neurologist shared that her son has Aspergers. He thrived in his school theatre program. Not only did he know his lines, but the lines of everyone else. He could fill in for anyone and was a true asset. I got excited sharing my dream of Robbie finding a use for this incredible talent. Acting could be a way to use this skill in a constructive way! Quickly and gently - he is a different kid, she said. Not once- but twice - he is a different kid. My heart sunk, even knowing it was a stretch. At that point we began discussing the other issues that brought me in. Sleep (lack of) and Stimming. The same 2 reasons we have seen neurologists for the past 4 years. Lack of sleep has always been an issue for us. While it is better- there are still 2-3 nights a week where there is little to no sleep. Again the problem being Robbie is disruptive to the entire household ( loud, jumping, running, talking, yelling, hitting) and not safe enough to be left alone. (Locking him in his room has been suggested but we don't feel he would be safe during those episodes.) As the conversation progressed and medications were discussed I realized we have tried every class. Stimulants, Alpha Agonists, anti-anxiety, and seizure medications. The neurologist explained that only 2 medications are approved for Autism. They are used to treat aggression and irritability. These are not issues during our daily routine- at this time. She suggested a great tool kit found on the autism speaks website. It lists every medication, target behavior and side effect. ( Great source of information- www.autismspeaks.com Autism and Medication: safe and careful use tool kit) We decided to try an alpha agonist for sleep once again. We don't want to medicate our child unnecessarily. We don't want to lose him even more. However, as she stated- everyone is better off with a full night of sleep. We have a new baby, A kindergartener and we are tired. He is tired. She also touched on my notion that there may be more to Robbie than simply the Autism. The questions began- has he had blood work, seen a gastroenterologist, had an MRI, EEG- and so on. Yes, yes, yes and yes. "The spectrum is large and each child is different." The words stung a bit. My response - as always - I want to ensure Robbie is the best he can be. Her response - doesn't everyone want that for their child?.............. I like this doctor. She is " real"- and I think I am ready to hear it, maybe?