Thanks to Joey's Mom
it occurred to me that today is a great day for this post- it's been cooking for a long time, but just hadn't happened.
When I say "changed our lives" I mean it in a tangible, literal way- not just metaphorically. Our family would not have been the family it is without HP... & Brendan wouldn't have his IRA either :)
I discovered Harry when Brendan was a baby. I have been a kid-lit afficianado since- well, since I was a kid, so when a long-forgotten friend (thank-you, whoever you are!) recommended "Sorcerer's Stone" I was happy to try it. I picked up the next 2 in the series the next day, that's how hooked I was :) I remember that my next 2 dilemmas were: how old does Brendan have to be before I can read it to him, & when was book 4 coming out? Book 4 came out before Brendan was old enough to share the books with him (summer of 2000), but a little over a year later, when he was 5 1/2, Charlie & I decided to take the plunge. Brendan was in kindergarten & had a sophisticated conversational ability, so we were sure he could let us know if the book got too scary for him. We began reading it aloud in the car on the way to Pittsburgh for a Thanskgiving holiday with Charlie's family, made memorable by sufficient dysfunction that I spent a lot of time in a hotel room reading HP to Brendan. Bittersweet, for sure. It was a great distraction, though. I read the very last line of the book as we turned into our street on the way home. Brendan had loved it & was eager for more...
That very same fall was Brendan's first as an identified "special needs" kid, with an indeterminate diagnosis (some thought he had CP, due to his severe developmental delays) & a very busy schedule of OT, PT, & visual-perceptual therapy. It was our first year "in the system", learning to advocate for our kid, dealing with IEP's & service providers & school districts. Our bewilderment was akin to Harry's first year at Hogwarts, as were our challenges. It was also the fall of 9/11 & all of the world-changes that brought. Somehow, Harry helped us cope. In fact, the very first book Brendan wanted to read, with his newly-forming binocular skills, was "Sorcerer's Stone", although he gave it up eventually, since he really didn't yet have the ability to focus or track words on a page. But it was so heartening to see him finally want to read...
The second book, "Chamber of Secrets", ramps up the action & scariness, but we decided to go for it anyway, with the precaution that it we could read it any time but before-bedtime :) I remember experiencing the basilisk chapters with Brendan held tightly on my lap with Charlie reading to us, because Brendan was scared but he really wanted to know what happened... I also learned the value of a bit of quick editing as I read (particularly when we got to book 3 & the Dementors), to tone-down the intensity a bit for nearly-6-year-old Brendan. Eventually I got all of the books on tape & Brendan would listen intently to them (this was a few years on, when we weren't afraid of his getting too freaked out by the scary bits) for hours on end.
Fast-forward to 2003- Brendan was 7 years old, & "Harry Potter & the Order of the Phoenix" was released that summer. After dithering a lot 3 years earlier when book 4 was released, not wanting to stand in lines at midnight (Potter-mania had finally hit), thinking I was a "big girl" & could wait a day or 2 before getting it, then finding all the local bookstores sold out for days after (I found my copy in a "Linens & Things" store, of all places), I did the Amazon pre-order thing & had the book delivered by mail (which is what we've done ever since). Brendan & Charlie kindly entertained his parents, who were in town visiting, while I snuck away & read as much as I could. I finally finished it at some un-godly hour of the morning, & then Charlie had his turn- we decided that the book was a bit intense for Brendan at that point, so asked him to wait another year to read it. By that time I had discovered Mugglenet
& was happily experiencing all of the Potter-excitement online as well.
I had never before participated in any online discussions of the books, although I was intrigued by the idea, when I read notice of a new, Mugglenet-supported discussion site called "New Clues to Harry Potter Book 5", based on a book of the same name by Galadriel Waters. The forums started-up in mid-November & I found them interesting (I loved people's sign-in names- so creative!), but I lurked exclusively for quite a while, it being too close to the holidays for me to have the time to participate. In early January of 2004 I took the plunge, although the most difficult part was figuring out my own sign-in name! I finally settled on the name Brendan had given me for Halloween that year, when he was Qui Gon (as a padawan learner) & I dressed-up as his Jedi master: Jedi Elgee (my initials are "LG"). I really enjoyed participating in the forums, particularly the insight & intelligence of some of the other regular posters. I found myself really thinking about the books & themes in them, & shared these thoughts with Charlie & Brendan, who helped me find even more ideas & insights. Nearly 2 months into my participation in the "New Clues" forums I was utterly amazed to be contacted by a site administrator (known to all as "elf") & asked to be a moderator. Yikes!! It required 2 OS upgrades for my mac to actually do it, since I needed MSN instant messaging to communicate with the other mods & admins. Mugglenet web-wizard Damon vetted me through all this (in one long night- I was downloading the upgrades via dial-up! It took hours!!) & I officially became a mod on February 29th, 2004 (the day that doesn't exist... :). (Also, the same day as one of my future mod-friends, ridgeback, became a member of the forums- hi rb!!). I was one of the second wave of mods for the forums & at times if felt as though I was riding the ebb tide of retiring mods, pulling me backwards, because it was hard at first to know who to contact if I was having difficulty as some didn't want to give me the time of day, but I persevered & found an amazing core group of hard-working, brilliant online friends. I do mean brilliant- these folks were thinkers, & on slow modding nights we'd share our own theories & discuss them (I got really good at coping with real-time, multi-person typed conversations, too :). Other than being brilliant (& a bit obsessed), the other amazing things about my fellow mods was that they were predominantly female (I was expecting just the opposite) &, drumroll please, they were predominantly in their 30's & 40's, a bunch of them being in their mid-40's like me. Such a revelation... Those creative sign-in names were hiding a lot :) One of my fellow-mods was a double PhD in physics & chemistry (& a mid-40's mom with 2 kids :). Others were writers, students, retired folks, new parents :) We were also an amazingly international bunch, with mods from the Netherlands, India, Canada, & South America. I learned a great deal about the world just sitting at my computer :) Brendan would sit with me while I chatted online with a friend in the Netherlands who was studying physics at university & have conversations with her about string theory... Oh, & the dial-up finally gave way to dsl when Charlie realised that I couldn't mod during the day (for fear of missing a call from school about Brendan) & encouraged me to look into something faster & more convenient.
Many of the online forums discussions became dinner-time discussions at our house. Brendan was incredibly proud of my being asked to be a mod (he now wears the Mugglenet t-shirt, sent to me when I became a mod) & couldn't wait to hear about the latest forums hijinks. In March of 2005 JK Rowling did an online chat on World Book Day & we had a forum discussing the answers to questions that were sent to her that day. One of the questions was "What is Snape's Patronus?", to which she replied that she couldn't answer that, since it was important to the future story (& we will likely find out today, after reading book7!). This question caught Brendan's interest, & he decided that Snape's Patronus must be a Dementor. I posted his idea in the forum, & the site admins loved this idea so much that they made Brendan an official mascot of the forums, naming him "The Crookshank" & sending him a certificate entitling him to participate in the forums whenever he wanted (as long as I was with him, there being an age-limit of 13 for participation in Mugglenet sites). He was soooo happy to have this recognition of his idea (& we were pretty tickled, too :).
The spring of 2004 was also when Brendan began to develop the OCD, with increasing anxiety & dysfunction. He'd had his autism diagnosis for nearly 2 years & it never occurred to us that he'd ever have more than that, or that he'd add a few more diagnoses to the mix... As I became more & more worried & stressed-out about Brendan, the forums provided a welcome distraction, & my online friends provided much-needed support. As I shared, slowly, tentatively, that Brendan was autistic & had developed severe OCD, I heard about their children born with chronic heart problems, relatives & personal experiences with anxiety. It was comforting & empowering. People I had never seen (&, to this date, we've only ever met one of our online friends face-to-face, although we've exchanged presents & holiday cards) were like friends holding my hand. They were a big part of how I managed to survive those first few months of helping us understand Brendan's newest diagnosis. Perhaps the biggest encouragement, though, was an unassuming email that we received in June... Galadriel had put out a notice a few weeks before, asking for participants in a new book project, to be published by her company, Wizarding World Press. They wanted to put together a book of fan essays devoted to the mysteries of HP, so were asking people to send them proposals for these essays. The deadline passed before I could even summon the energy to think about doing one myself, since my kid was barely functioning at this point. Then, we got an email from elf asking if Brendan would like to participate in the project. He would be the youngest essayist, at age 8, & he could write on anything he liked, although they'd love to hear more about Snape's Patronus... Brendan thought about it & decided that he would like to participate, so he dictated a reply email to that effect (I learned later that one of the Wizarding World Press folks thought, based on Brendan's email, that he was in his teens rather than 8 years old :).
This was an amazing thing for Brendan to do at this point in time. He was hampered by sometimes crippling anxiety, wasn't typing or even reading fluently yet (since he'd only had binocular convergence for 6 months or so, & his visual tracking skills were just as new). The last 3 months of 2nd grade he'd spent in a virtual (& sometimes actual) fetal position & none of us really understood yet what his prognosis was, OCD-wise. But away he went on his essay, with me along to help. He couldn't skim through the books himself, to find the info that he needed to prove his thesis about Snape's Patronus, so he told me what he was looking for & I found & bookmarked the places, which he then read for himself. He made lists, verbally, which I typed up for him. He developed a series of questions that he felt he needed to answer in order to make a good case for Snape's Patronus being a Dementor, then wrote expository paragraphs that answered his questions, & which he eventually put together as his essay. He had 2 weeks to do it (he had to finish early because the deadline was while we were on summer vacation), & he finished on time. He even added an intro section that explained how he'd been introduced to HP, which the WWP folks liked so much they asked all of the authors to do as well. After sending in his essay, life returned to "normal" (mostly learning what Brendan needed in order to live with the OCD anxiety). Brendan also finally read "Order of the Phoenix" that summer, having read excerpts to do his essay & not finding it too scary.
We didn't think much about the essay until October 2004, when we found out that "The Plot Thickens... Harry Potter Investigated by Fans for Fans" would be published (appropriately) on Halloween. We got copies of the typeset essay for proofing & that just whetted our appetites. And then the box with our complimentary copies arrived :) We decided to ask Brendan's school to put out a press release, so that they would get the publicity, & all 3 local tv stations covered it, 2 sending cameral crews to school to film Brendan reading some of his essay & answering questions. He was a bit nervous about being on tv, so we role-played it the evening before (with dad as a deranged cameraman, coming in for closeups with his cardboard-box camera :), first with Brendan interviewing me, & then me asking him the same questions. It was great publicity for school & the book, too, & Brendan came through with flying colours :) We were very excited to see the book prominently displayed at our local bookstores, & it was out favourite holiday gift for friends & family (autographed, of course). We also learned that they planned to have a discussion forum for all of the essays in the book, & the authors would moderate their own essay's forums. Brendan was allowed to do this under his own name (he decided to keep "The Crookshank" as his sign-in), with the understanding that I would be with him while he was online. He had filled out all sorts of fun questionnaires for the book site & was really looking forward to modding his own forum. Many of my online mod friends were also authors of essays in TPT (there were more than 50 authors from over 10 countries, ranging in age from 8 to over 60...), & everyone very kindly included Brendan in online chats (& even sent him birthday greetings by throwing a virtual party) once the new forums were up. As it turned out, Brendan's forum didn't go up until about 2 weeks before "Half Blood Prince" was released, so there was alot of online excitement about the new book at that point (& the possibility of some of the mysteries being solved!). By this time Brendan was typing on his own & he typed all of his responses to comments & questions in his forum. We brainstormed discussion threads to put up, some serious & some silly, & figured out how to post polls on various topics. It was really fun :) The only concession to his age was a warning that I put in, explaining that the author was 9 years old & asking everyone to behave themselves- they did :)
"Half Blood Prince" was the first HP book that we all read together (ok, so I read ahead) when it was released 2 summers ago. It took us about 2 weeks to get through it, & Charlie & I had to keep passing it back & forth when we got to the part where Dumbledore died because we were both in tears. The "New Clues to Book 6" forums started up in September, which I participated in as a mod again, & that extended our enjoyment of the book for quite some time. Eventually, though, people moved on to different projects, including the sponsors. I found my involvement in blogging & participating in the online autism community took more of my time, too, & drifted away from the online HP world (although Mugglenet is still my home page :). I know that many of my HP friends still keep up with us through my blog & I hear from them occasionally by email. I miss you all! You folks are the reason I survived that tough summer with Brendan to become a blogger & still-sane mom to my kid. Many thanks!!
Oh, & Brendan's IRA...? Well, he managed to earn enough through his royalties from TPT that we could start one for him. (We basically matched the money & let him blow some of it on bionicles, too- kid's got to have some tangible reward for his hard work :) I can just imagine Brendan at retirement age, thinking back on his HP days...
So that's how HP & JK Rowling changed the life of this family. I know that JKR has a copy of Brendan's book, since Emerson (the founder of Mugglenet) gave her a copy when he visited her for HBP's release. It's an autographed copy, actually. They asked all of the authors to autograph a pile of first-pages of their essays to be bound in special editions, for JKR & for each author. There were about 200 pages, I think, & I panicked a bit, since no way could Brendan sign that many pages... It was the first time that the editors of TPT realised that Brendan is autistic & was not just a super-bright kid :) We brainstormed a bit by email & elf suggested having a rubber stamp made of Brendan's signature (they even offered to pay for it, but it wasn't necessary). So that's what we did, & rubber-stamped "Brendan the Crookshank" on all those pages. And JKR has one of them... Sometimes I imagine that she might have come across the essay written by 8-year-old Brendan. It's a pretty amazing thought (makes me a bit teary). Throughout this whole experience, what has shone through for us & for Brendan are his capabilities. He wrote the essay at one of the most difficult times of his life to date & gained the joy & confidence of being a published author, a whole new online community of friends, & some cool legos out of it :) He found his writer's "voice" & it still shines through in whatever he writes. We have shared in this joy & are so grateful to JKR, GW, elf, & our many friends along the way.
Labels: Harry Potter, OCD