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I've been conversing with a few other families off-line over the last couple of months as we prepared our DS for the transition from high school to college, and I thought I'd drop a note here in the event some others are staring down the barrel of college decision-making. I also wanted to make sure and thank a few of you who tread this ground before us -- most especially Emmalily -- and gave us some great advice! Thanks! So, for quick background, DS was likely "a PANDA" by the age of 3, but we didn't know, nor did we get any help with medical interventions, until he was 12 -- almost 13 -- and headed into 7th grade. He became so badly debilitated, however, that he went from fully functional if quirky to completely non-functional within the space of about 3 months. Finally, after almost two years of abx, lots of therapy, continued supplements, and tough love, DS returned to functional and managed to close out his senior year in high school summa cum laude. He continues to battle a degree of OCD and anxiety, particularly when under stress and/or transitioning to a new, unknown situation, but for the most part you wouldn't know he was any different from most bright, healthy kids. In our college search, thanks to some great advice by knowledgeable folks like Emmalily, we knew we wanted to find a college that: 1) offered a low average student-to-teacher ratio; 2) was within a reasonable drive from home; and 3) had a disability office that was readily accessible and pro-active, as well as, of course, offering the programs that DS wanted to study. One very valuable tool we also made use of was a chance for DS to participate in a short (3-week) summer program on a college campus the summer between his high school junior and senior years. It gave him the experience of living on a campus, keeping his own schedule, living and dining among peers, getting himself to class, etc., and we think that it had an invaluable positive impact on his confidence and coping when it came time to actually leave home for the real thing. We found his "dream school" about 1 hour away from our home with the curriculum he wanted (computer engineering). It's a smaller school with a lower student-teacher ratio (9:1) and a readily navigable campus. DS attended two, short, on-campus "readiness" events -- a scholarship weekend for interviewing for a variety of scholarships and a summer orientation session -- that once again added to his confidence that he could manage living on campus. We made advance contact with the Director of the Disability Office for the school and provided her a copy of DS's IEP as an example of the sorts of accommodations (extended time on assessments, etc.) that had contributed to his success in high school; she was very accessible and communicative and assured us that his accommodations could be met on campus via the Americans with Disabilities Act and that she would notify DS's professors. She also offered a "mentorship" program whereby DS would be "matched up" with an upper classman on campus to help him get in the swing of things. DS has had two brief subsequent one-on-one meetings with her since he's been on campus, mostly to fill her in on his classes and professors, to reconfirm which accommodations, if any, he feels he needs given the nature of the material and the teaching styles, etc. and to introduce him to his mentor. In short, she's been great -- available, but not intrusive. So, DS has been on campus since mid-August, and he's doing great! That's not to say there haven't been ups and downs . . . moments when he called me to say he didn't like this (the dorm showers) or felt uncomfortable with that (some social activities designed by his RA) . . . but he's figuring it all out. He likes his classes -- actually loves some of them -- and, knock on wood, is keeping up. He's making some friends and making peace with the parts of college/dorm life that he'd prefer weren't parts of the picture. In other words, he's adapting. Thanks again to all of you who've helped us on this journey, and here's wishing all of you happy and safe transitions as your kids continue to grow! Nancy
I'm making my PANDAS awareness to do list as it pertains to my work at the RI dept of ed and here are some of my initial thoughts for a to-do list: info packet on math and writing learning disabilities and connections to PANDAS/PANS for special ed directors and school psychologists (I'm point in our office on developing guidance to school districts on learning disabilities, other health impairments, and emotional disturbance in the state) awareness brochures and or table display or something at an upcoming statewide summit on social emotional health being co-host by Bradley hospital and RIDE August 2nd (we're inviting school district leaders, reps from school guidance programs, social workers, psychologists, school resource officers, and more and working with CASEL on putting together the day with the goal of developing a statewide action plan to support social emotional education in our schools in RI) continue the stream of info we've started to school nurses and special ed directors and to heads of school psychology programs at URI and RIC build parent resources related to PANDAS at both the RI Parent Information Network and Parent Support Network bring awareness to the RI Special Education Advisory Council facilitated by my co-worker get in front of legislators with educational and mental health interest - this needs more thought of course, but it won't be hard for me to connect I'd welcome any suggestions, angles, critical pieces to include, things left out in my thinking. best, Emily