The best thing to come out of Feff’s 5 week stint at Bryan Hospital was meeting Dr. Nightengale. (His real name, because you can’t make that kind of stuff up.) Dr. N. didn’t have to spend much time with Feffs to declare, “Any idiot can tell Jeff is autistic.” (My mom is a bigger woman than I for never passing this astute observation along to those first patronizing docs.)

A diagnosis! Finally! Now Feffs can get the treatment he needs, right?! It wasn’t quite that simple. First, Dr. N. said we were a lovely family, but we couldn’t do this alone. He proposed sending Jeff to a residential school – there were a good many in the states, just none in Nebraska. My mom balked at the idea of sending Jeff away. Dr. N. said okay, well, Jeff could still be taught to speak – he would need 2hrs of speech therapy/day. When Lincoln Public Schools refused, Dr. N. and my parents got it on Jeff’s IEP, so they would have to comply – theoretically. Spot checks revealed he was getting 0-20 min/day. LPS repudiated the autism verdict, coming up with a number of “expert” opinions/alternate diagnoses. Dr. N. suggested my parents take Feffs to Menninger’s, a famed psychiatric clinic in Topeka, KS, for complete testing/an irrefutable diagnosis. While Feffs was there, we stayed close by at a Ronald McDonald House (Where my baby brother, Alex, stood up for the first time.) (Some people will do anything for attention.) It was a long five days in Topeka – all day, every day testing; they grilled my parents about family history, driving my mom to tears at one point; Feffs was throwing up/got super agitated and kicked out the window of our car. (My father found this less hilarious than my sister and I did.) 

Menninger’s confirmed the obviousness of Feff’s autism. LPS was still non-compliant. Jeff also started coming home from school with bruises – one in the middle of his back from being shoved up against a wall-mounted pencil sharpener. His bus driver once sent him off the bus without shoes on – into a foot of snow. In short, Nebraska wasn’t at the forefront of autism treatment/education. My parents started to explore the idea of out-of-state residential/educational facilities, fighting LPS tooth and nail, every step of the way. When Feffs was rejected by every school, my parents discovered LPS had falsified his records, saying he was completely uncontrollable, had x number of aggressions a day, etc. This was political – if a district is unable to provide a child's education, they are required to fund that education elsewhere. A fact that was plastered across the Lincoln papers, with the superintendent declaring, “We don’t like spending these kinds of dollars any more than you do.” My parents were mortified. Even I heard about this for years from my fellow classmates, who no doubt heard about it from their parents. The positive thing to come from all of this is that LPS started working with other school districts in the state to try to develop residential special education programs in NE, “so we can serve them here for less money”. (Also, presumably, so “them”’s parents wouldn’t have to ship them across the country for decent care/education.) Devereux Santa Barbara was the last school to call to turn Jeff down. My mom broke down on the phone, saying she just didn’t know what to do. Hearing her hurt/love/desperation, they agreed to give Feffs a trial run. They immediately fell in love with his charming smile and general heartbreaker-ness. (Duh.) Thus began a new (beachier) chapter in our lives.

Autism Speaks is doing incredible things to ensure an easier path for families of those w autism - and funding that insanely important research. (Still praying for that magical key to unlock Feff's voice!)

If you would like to help them keep doing these unicorn-y things, you can donate here: http://bit.ly/FFCstacieannabelle