Friday, December 2, 2011
A long time ago, I read an article in the NYT "My Turn" column - whatever it's called - about a man with chronic fatigue syndrome (or was it something else?) who loved to surf. Because of his illness, one day (or hour) of surfing would cause him to have to lie in bed for 2 weeks at a time after. But he was so determined
to live life as best he could, that he did it anyway. He considered it more than worth it.
I am reminded of that as I sit here tonight, after having gone to both the Portland Public Library, remodeled 18 months ago, and the year-old Trader Joe's today - for the first time.
My chemical sensitivity makes this a difficult, arduous task but one I've been wanting to try for a while. I just didn't quite expect to do them both at the same day, but yeah.
Ryan came with me as we entered the library. Architecturally and visually very pleasing. It now looks like a modern, big city library (without the institutional feel). Plants, huge windows, lots of benches and artistic touches. Everything arranged neatly and intuitively. Ryan got a library card. I got my fees waived from the last time I had a library card there, 4 years ago. Ha. Librarians very nice. Books too smelly to probably ever make use of it but nice to know it is there.
Walking down Elm St to get to TJs - SO much nicer than walking down Pearl for WF. Brought back so many memories of when I used go to Wild Oats that way. Had a moment of feeling free, independent and happy. Elm shorter than Pearl lol.
Trader Joe's - walked in and thought "This isnt so bad." They didnt change much about the building from when it was WO, so makes sense. Big and open, easy to manuever, but lacking a lot of the stuff - or at least a lot of the varieties and quantities - of things I've found at all the other TJ's I've been to.
Still, the sweets section still was VERY enjoyable to examine.
Got one of their dark choco Belgian bars to try. Rob got lots of snacks for his meeting tomorrow, most of the suggestions provided by me. =)
Knowing that they imported a lot of their employees from other states, I asked my cashier where she was from and she said Wyoming. When I showed her my Montana ID, she got very excited, and VERY enthusiastically told me that Missoula has the biggest smokejumper center in the country. I *love* enthusiastic people. We had a very nice and rather intense discussion for about 3 minutes. She misses Wyoming - no mountains here - by Western standards, anyway.
So, yes, when I got up from my nap, I felt like crap. And spent several minutes convincing myself to get up rather than wallow in my misery. And it is quite possible there still might be more of that. But, I am hoping I can be more like the man who chose to live in the world despite the cost.* Just not quite as extreme as him. And I know today, I took two major steps toward that goal.
*Restrictions and limitations may apply. Coupon only good for one sale per week.
Tuesday, October 4, 2011
"Slip" Won't Easily Slip Out of Your Mind After Reading It
Why did Tanya Savko write her new book, "Slip," published by Kova Publishing?
Savko was frustrated with a lot of the misconceptions that surround autism, especially the statistic that 85% of all marriages where there is a child with autism involved end in divorce. She wanted to show that it really is a far more complicated picture than that - that marriages that involve autism are subject to the same frailties and potential problems that any relationship would be. Autism is only one factor, she says. At the same time, she wanted to write a portrayal of what family life with autism was really like.
And Savko has succeeded. I found "Slip" to be an engaging portrayal of life with autism, as well as a compelling portrait of a failing marriage and subsequent new start in life. Andrew Pavel, already feeling unsatisfied with his life, is shocked when his wife Erica announces that she doesn't love him anymore. Around this same time, their son, Nathan, is diagnosed with autism. Everything is changing around Andrew, and he doesn't know what to do. Eventually, though, Andrew learns that he can not only exist on his own, but thrive, and manages to stumble into a life he is actually happy about. This book will not only teach you a lot about autism, but inspire you as you watch Andrew try to recreate his life into something worth living.
I had the opportunity to interview Tanya about her book, and how closely it matched her life. Here are some of her answers.
1. How much of this is based on your own life?
This book is based largely on my life, but some parts have been fictionalized. I do have a son, Nigel, who has autism and went through the same struggles as Nathan. Nigel's younger brother, Aidan, also has sensory integration issues, like Eileen in the book.
2. Why did you decide to do a fictional account of life with autism instead of a memoir?
Writing a novel presented more of a creative challenge, and I love to create characters. There are a lot of really good memoirs out there about autism, but not as many novels, so I wanted to contribute something to that genre.
3. Nathan has a lot of sensory issues in the book. Can you remember the first time when you were able to figure out why something that seemed to bother your child for no reason was actually a sensory issue?
When he was little, I couldn't figure out why he had so much trouble in crowds. I later figured out that it was the noise that bothered him.
4. How long did it take you to write this book?
It took about 2 years to write, then another two to self-publish.
5. What has your most difficult struggle in your journey with autism been?
Keeping Nigel safe. When he was younger, he would wander off a lot, or bolt when something scared him. I was constantly afraid he'd wander into a parking lot and get hit by a car. Also, being a single parent has been difficult.
6. What are your happiest memories in your memories of raising your kids?
When the 3 of us are home together watching a funny movie we all enjoy, and laughing. This is somewhat of an achievement when autism is involved, due to the difficulty of having joint attention and sharing experiences often found in autism.
7. What do you think are the biggest misconceptions about autism?
That people with autism can't talk, or that they have no desire to communicate. Also, the myth that autistic people don't have empathy, which is not true.
8. If a new parent of an autistic child came to you, what is the first thing you would say to them?
I would tell them that it's going to be okay. That's what I would have wanted to hear. Also, it's important to set up a good support system.
9. If you could look back at your years of special needs parenting, what is the one thing you think you most did right or are most glad of having done?
I am glad we enrolled Nigel in the ABA program. We had him in there 3 years, and he really improved a lot.
Thanks, Tanya, for your time! If any of you readers would like to purchase a copy of Tanya's new book "Slip," which I highly reccommend you do, you can get one at Amazon by clicking this link .
Saturday, October 1, 2011
So assuming it still will continue to exist, try this link
I only spent like an hour on it....geez
Friday, September 23, 2011
The 2nd episode of Parenthood on NBC. I just watched it. BEST THING I HAVE EVER SEEN ON TV.
And without a doubt the most amazing coverage of Asperger's I have ever seen.
I had tears in my eyes by the end. I have never had tears in my eyes from watching something on TV.
Every storyline was so vivid, so well played out, and so emotional. I got caught up in everyone's stories.
But Max. Oh, Max. When they showed him trying to make friends .... I can't even describe... ptsd here because it brings up so many painful memories of me in the exact same situation.
That scene had so much realism, you just can't even imagine. Then, later on, when they showed him sitting on a table at reccess, reading a book while everyone else played boisterously around him, and he just tuned them out? My entire elementary school experience, condensed in one scene. More flip flops of my heart. I spent every reccess reading a book on the cold, hard concrete by the door in elementary school. That scene could NOT have been any more real.
Fortunately these were only like 30 second scenes so I didn't have time to get too depressed.
But, at the very end,when they show him sitting alone again.And his younger cousin Jabar comes up to him with two or three of his friends,and sit with him. They start peppering him with questions - questions about things he might actually know about. He looks at them for a second, silent. Not saying anything. You're worried for a second he might mess this up, might not respond to them at all. But them he says "Hi, I'm Max Braverman," just as he was taught. And this time, they respond well. And then Max launches into a dialogue about the video game they were asking him about - finally at ease, communicating in his own way.
And then the clencher. Jabar,the younger cousin, says to his friends, "See, I told you, he knows everything! He's like a genius!"
And then my heart swelled up inside of me, and tears came to my eyes. If only. If only everyone with Asperger's could be surrounded by people who sees what they CAN do, and not what they can't. If only they could be surrounded by people who aren't put off by their awkward social skills, but like them for who they are.
I eventually found those people,but it took me a hell of a lot longer than Max, at age 8 or 9 - it took me until the latter half of high school.
And I just think, put together, those were the most moving scenes I have ever seen on TV.
In those three scenes, which probably weren't more than say 4 minutes altogether, they perfectly encapsulated first what Asperger's is, and second, how to interact with someone who has it. What more could you ask for?
If you have not seen it - you must watch it.
Click here to watch it.
The storyline with Adam and Crosby was nothing short of inspiring, and the story line with Julia was gripping - the rejection of the coffee girl was nothing short of a knife in the heart - but it was the storyline with Max that really got me.
I LOVE this show.
Saturday, September 3, 2011
The beautiful OOB Pavillion
Tonight I went to the WPOR Concert in the Beach or whatever they're calling it now concert. It was at the Old Orchard Beach Pavillion, which is the best place ever for seeing concerts. All of the comfort of the layout of an indoor theater, outside!
Man, after seeing the Simon an Garfunkel tribute there, which was so quiet you could literally hear a pin drop, it was kind of a little bit of culture shock! S&G was half full, this was packed to the brim. SG no one sang along, you'd sing over the band - this one you couldn't hear yourself over the band, lol. People were so happy, yelling an screaming, clapping an just generally having a goo time.
Lots of WPOR staff around, several police around which makes you wonder what they were expecting, a few concessions. As I had expected, the last couple rows of seats had plenty of empty seats, which is where I wanted to sit anyway. There was not a bad seat in the house.
First guy boring, mostly, except for a rendition of the Beatles' Get Back (Beatles at a country concert? I wasn't expecting that), and a cover version of Rascal Flatts' What Hurts the Most. It might have been unremarkable, except that he had the audience sing every other verse, and I LOVE when they do that. It makes you feel so connected to everyone around you.
2nd act, some American idol guy, felt more like a religious revival meeting than a concert, lol. Nah, it wasn't that bad but this was definitely a guy who put God in a LOT of his songs...and everything else. As introduction to one of his songs, he asked "How many people were raised going to church every week?" or something like it. I am sure that would have gone over REAL well in the South, but I have to admit I was tickled to death when hardly anyone yelled back to say yes. This is Maine, after all. We have standards. =) No offense to religious people, I just don't like it to invade my music any more than it has to.
He was boring, an I was glad when he was over.
Talked to a trio of women in their 70s or 80s who were behind me during intermission. Would have been bored to death waiting otherwise, so I was lucky! One of them said she liked the guy's singing, but why did he have to dress like that? Couldn't he get a nice shirt? lol.
Jason Michael Caroll put on a great show. Took me a few songs to get into it, but then I got pretty much swept away, or as swept away as seems possible these days. I love the feeling, though, of closing your eyes an feeling the emotions of the song sweep through you, pulsate through you, so that nothing else exists in the world but that song.
And I did get that feeling on a few, most notably the first song I knew, "Numbers," so that made me happy. He did a good job alternating between honky tonk party songs that I hate and more pop, catchy or slow songs that I love. So I didn't really have a chance to get bored. He spent a lot of time off the stage in the front row signing the back of people's shirts.... and I tell you, he didnt even miss a beat when he was doing this! I found that rather amazing.
He was high energy, a gifted performer, and great at interacting with the crowd. Even if he did make fun of our "lobstah" ... haha. I found myself genuinely laughing at some of the stuff he said or did, which is not something I'm accustomed to doing. He sang Where I Come From, an Allyssa Lies 2 songs later, so that was good.
Jason Michael Caroll (in green)
Couldn't remember the other song I knew by him till he started singing it - Living Our Love Song. I was like, duh. Great song. Only bad part was it was the last song, quite unexpectedly too. People fleed so fast after that I was left in my seat stunned like, what happened? lol.
Only song he didnt do was Hurry Home. As I was sitting there trying to reconcile with that fact, someone came up to me and asked if I wanted a meet and greet pass. Stunned even further by this, I thanked the girl profusely and stumbled off to the given area, having no idea what I was doing. I waited with a very nice 13 year old girl who I shared my pass with for about half an hour. Asked JMM why he didnt do Hurry Home, he responded in the most pronounced Southern drawl I have ever heard, "I'm sorry, daaaaarling, I wanted to, we just didn't have time for that one." Nice guy. Said a few other things, left. Nice, but weird, end.
Not a bad way to spend a couple hours,though, that's for sure!! So nice to be able to experience a real concert like that in a venue I was actually comfortable in.
Thursday, September 1, 2011
Stream of consciousness writing on first day trying to get signatures for the petition to get gay marriage on the state of Maine ballot. Very exciting an meaningful for me, not because I'm gay but I'm a member of other minorities an I sympathize with this issue very much.
As a person with AS, my opportunities for socializing are limited. Being a rather social person at times, though, I welcome the opportunity to interact with other people in ways that feel safe to me. This is a very structured situation with a definite script, so it makes it far more easy than, say, small talk or friendship with any one of these people would have been. I probably talked to more women my age than all the years since college combined today. Usually I go out of my way to avoid them, today I made a beeline for them, they were the only ones who I had a chance of getting to sign, lol. But they were all friendly, so. Having a clipboard does gives you a certain sense of authority and comfort.
Met R at 2, he got someone to sign on his first try, I had 5 or 6 refusals before he showed up, lol. He's a very outgoing person so it was very fun to do this with him (get signatures to put gay marriage on ballot). Monument Sq. we got a few ppl, tommys park by exchange we got the most. Commercial st, all tourists. Biggest lesson in demographics, really only the young ppl were worth asking for the most part, altho R was better than I at getting some older ppl to sign. Most of the older ppl just didnt want to be bothered with a petition, no matter what it was for. Wasn't a single young person (who stopped) an then refused. we were pretty good at figuring out who to ask so our acceptance rate so to speak was pretty high but sometimes took some time to spot that next person who seemed worth asking. (Of course, we did ask older ppl too, they just usually said no).
Interesting moments... when R tried to ask the guy in a lobster costume/mascot on commercial st to sign, I was like "you cant ask him!" then the lobster guy took off his head to tell us he'd already signed, lol.
The guy playing Blackbird by the Beatles on guitar on exchange - love that song.
The woman leaning against the wall on exchange who we asked, and then I realize she was having a hard time writing. thought it was just cus it was an awkward position to write at first, then realized it was something more. her whole body was moving and shaking an she was struggling to write anything at all. I didnt say anything, just held the clipboard down for her, figure maybe its cerebral palsy. then she told us "I have Parkinsons" so that made sense.
It took her a very long time to do it but she managed to sign, an I was impressed by her conviction, courage and dignity. Not to mention persistance! The writing wasnt very ledgible but just ledgible enough, she was worried. "Will it count?" she asked several times. I assured her it would.
Most people were very friendly, an almost every single person who signed thanked me/us for doing this an wished us good luck very sincerely. Ran into one other person also collecting signatures, one person who worked for Equality Maine currently, an one person who used to.
There was a lot of people who had already signed, which is good, and also a lot of people who said they'd love to sign but weren't registered to vote.
Oh, the middle aged guys who always hang out at the hot dog stand by Exchange - 2 of them signed, to our surprise, but it might have been because I knew one of them and he said to them he'd already signed. Still. It was good.
Only 3 ppl out of like 40 responded negatively. They were all after R left, so that might have had something to do with it, lol. It was all fine though.
10 different towns, 10 from Portland, the rest from others. 13 women, 7 men. Going back again next week as long as weather is good! Prob. Wed for farmers mkt.
One thing's for sure, it sure made me love my city. Portland is so beautiful. Been a while since I walked all the way from the ferry terminal up to the Eastland.
Thursday, August 18, 2011
This will be stream of consciousness writing as I am too tired to do anymore.
Well... What a day. Left at 12 with Rob to get the 1210 bus at Walmart. When we got there the farmers market was going on which I'd forgotten about. Much excitement and one whoopie pie for Nate later, I fortunately managed to see the bus when it came and get on it in time. It was only 5 min late instead of the 10-20 I was expecting, but I kept an eye out. Bus ride was short, talked to bus driver. When I got off the bus in Portland the Portland farmer's market was going on! And as it was only about 1230, it was BIG! Woah! 2 farmers markets in 1 day without even trying! I put on my Walkman for a few min, and Martina's new song, which I have been dying to hear on my Walkman while outside , came on , so I crossed the street an sang to it. That put me in a good mood!
Then Ryan came and we wandered through the farmers market, which is far bigger at 1230 then it is at a few min before 2 when its closing time. I ended up getting a surprisingly comfortable looking soft tshirt for $5 (it's smelly though), a choco chip cookie for Marion, an some good looking French fingerling and purple mini potatoes.
Cookie I bought for M at Portland farmer's market
Then we had an unfortunate incident with a bird an his refuse dropping from the sky. Ewww. It was sunny and beautiful, not humid, hot in the sun but fine in the shade. A great day to walk around. We went to the park and Ryan cut my hair while singing funny songs about it! American Pie was playing at the nearby resteraunt speaker so we, ok I, sang along to it. Then Amber wanted me to sing If I had a Hammer, so I happily obliged. Oh ya an Ryan started singing Daydream Believer so I ha to help him finish. =)
After the haircut, we had to hightail it to Whole Foods cus we were behind schedule. I got all my food that I wanted in record time, and after some debate if we had enough time to still go to Reid State Park, we hightailed it over there. Not a bad ride at all. Easy to find. It was stunningly beautiful once we figured out where we should be. Biggest waves I can ever remember seeing on a beach. Lots of rocks to climb on for absolutely stunning views. A lagoon for Nate an Rob to swim in. It's not a good beach for walking, but the waves, wow. Spent 2 hrs there an went to the 5 Islands Lobster Co for dinner. Very cute, small, quaint, picturesque place that was packed to the gills! Left at 8 when the sun went down and drove back. Quite a good day overall I must say! We planned that well. Got some amazing pictures.
Photo essay of beach -
Thursday, July 14, 2011
Funny moment that I thought just might worth be posting here...
A friend of my dad's made jello shots at the house today. Instantly that little buzzer went off in my head and I remembered the very interesting piece of info I recently learned about jello and figured this was a good time to share it. The funny part was that everyone in the house was properly grossed out to find out that gelatin is made up of ground up animal bones except for my dad. Surprised, he looked at my mom, confirmed to her what I had said in an offhand manner, and said "You didn't know that? I thought everyone knew that, that it was kind of in their store of general information." (And I don't think he was joking.) Score one for the "How To Tell If You're an Aspie (or have Aspie traits) category, lol.
My dad is not by any means diagnosed, but let's just say that I don't think some of the unique similarities I have with him are coincedental.... in many ways we definitely think the same way! Which I like.
Wednesday, July 6, 2011
My thoughts on it from Facebook, written in a slightly more stream of conscious way
Simon and Garfunkel tribute.... slow at first but ended up very nicely. Venue it was in - absolutely beautiful. Stunningly beautiful, even. Perfect combo of inside and outside amenities. Everyone seemed to enjoy it, and it was nice to go to a concert with them. I am pretty sure we were the only people under 50 there.
One of us got on the shuttle bus there and said he thought he walked into some senior citizen group, lol. Not crowded. Not too hot. Nice to meet another member of our group, R, for the first time. Easy to find and get to. Well organized. Appreciative audience. 2nd half much better than first. Didnt know a lot of songs in the first. Best three songs - America, I am a Rock, and esp. the Boxer. Funny cus I said to Nate and Rob near the end "But they havent done the Boxer" and that was their encore/Grand finale. Beautiful song. It might not have been toe tapping music, but it was pretty and a good group event. Went to OOB (beach/carnival) after. The rides were REALLY neat looking at night. I was dazzled, I havent been there in ages, and never at night. Got many pictures of rides lit up against sky.
The venue - outside with all the amenities of an inside theater, half a mile from the beach
And that's all for now. Contending with the summer heat and trying to make the best of it. Went to the Strawberry Festival in S. Berwick, saw awesome Beatles tribute concert, and Bath Heritage Days last week. Next up - swimming! I hope =)
Wednesday, June 29, 2011
Took the bus into Portland to grocery shop today, which I hadn't done in a month.
The 20 minutes waiting for the bus was iffy, but not too bad. It wasnt too humid fortunately. And I sat on the curb so I didnt have to stand. At 15 min late I starte worrying, but he came at his usual exactly 20 min late on the nose mark. I hadnt seen him in a month, we talked about festivals an I found out he loves the Beatles too. It's too bad he works Saturdays, when most of them are. When I got to Portland, I was so surprised, the farmers market was on! I had completely forgotten it was Wed. In fact I'm gonna have to start going in every Wed to go. Even tho it's only produce an nothing else, its still fun. I was so surprise and happy. R and I walked around for a while.
We saw the woman who usually sells her photos on Exchange St. R decided to buy a picture of elephants he liked, an she gave him a dollar off since she knows us! Her granddaughter gave me a shell necklace she made for free, it was cute. I wished I had somethig for her. We sat on the bench in Mon. Sq for a while and talked . It was such a beautiful, sunny, good air day, to be sitting in Mon Sq an chatting on such a beautiful day felt very good. Then we went to Tommy's Park and R cut my hair. Which feels much better now! Oh, and we saw a cute 18 mo kid there playing with his dad. He gave R a high 5! We also saw someone in a yamaca (sp), very rare for Portland, and a transgender guy in a wheelchair stopped to talk to us, rather, R. There were kids playing hackey sack, men selling hot dogs, and everyone just enjoying the beautiful city.
After my haircut, we met up with another friend and walked down to Whole Foods. A long and involved discussion followed, and I got my groceries, which I ha to rush on cus of the long convo, but it was ok. I got what I needed and stayed under my price limit. I was able to help my friends with something, which made me feel good. Overall, the sunshine and non humidity, the feeling of independence of getting there myself, and the being with friends (and getting groceries myself) made it for a very good day overall. I am glad to have those once in a while!
(more solid part)
Why am I feeling happy now? I think it was because I was able to help someone. I know it is, in fact. I am so tired of always being the one who needs help. It feels SO GOOD TO BE ABLE TO HELP someone. It makes me feel more complete, like more of a human being. It makes me feel worthy. I love it!
I walked to WF with my friends, let's call them R and B. I am sure I will forget who B is if I use the initial B, but oh well. B started crying when we got there. I was very concerned and wanted to help her, but she couldn't tell me what was wrong. I asked R in private if he knew what was wrong, but he said he couldn't tell me unless B wanted to tell me herself. I accepted that and we walked back to the table. B said to me very shakily "Can I ask your advice on something?" I was honored, floored to be honest, and said Of course. I don't think anyone has ever asked me that before. She then said "Could we go outside?" and I said Sure, just tell me where. I had memories of me asking my stepmom the same exact things, more or less, years ago in just as shaky and uncertain terms, and I was honored and privileged to be the one on the other side for once.
We stepped outside, and, well I should make this vague since it's a blog and all, but she was having relationship problems with her boyfriend, R, who was also with us (although not outside). She was having trouble getting him to tell her some things she needed to know, for lack of better phrasing. I sympathized and reassured and then said (well, first asked for permission to) talk to him. So then I went inside and asked him the questions I wanted to ask him. It took some time to make sure I fully understood his answers, but I did. At this point R wanted B to come back inside, so I went outside, relayed to her what I knew so far, and she came back in.
To make a long story short, by the end of it, after I had helped translate what R wanted to say but couldnt figure out how to say to B, B understood that what had happened was not her fault, which is what she had feared all along. Although she was of course understandably still not pleased at the thing that happened, she was much relieved that she hadn't caused it, and the two had a much better understanding of each other. I also learned some things about B that will help me be a better friend to her, which she needs, so I am glad about that, too. They both thanked me sincerely as they left. It felt SO GOOD to have helped someone in a truly meaningful way. Also, I feel much more comfortable swimming around in people's emotional lives than I do just about any other place, probably because it makes me feel emotionally connected to others, which I struggle with, so that part was good, too. That is of course why I read so many autism blogs and books and so on.
It would be beyond rewarding to be a counselor of some sort, but I'd only have enough in me to do it in a very limited way, and there are too many other factors in the way. But if anyone has a problem they want me to listen to, well, I'm your person, because for some reason I've always found it much easier to listen to others talking about their problems or significant things in their lives than all the other paling by comparison things people talk about.
Man, it felt so good to be needed. It touches that emotional spot in me that is so often barrenly empty and aching, that I try so hard to fill or else not think about. All I want is a good friendship where I can contribute and give as much as my partner, but all too often it seems the balance is shifted way too much in favor of what the other person does for me, due to my many limitations. I try not to think of myself as limited and give what I can - caring, good cheer, smiles, support, companionship, and the occasional chocolate or two. And I think those areall good things and enough for now, but wouldn't I love to make it more equal, like I did today.
He gave me a haircut, and I helped him with his relationship issues. Perfect equals.
May there be many more days like today =)
Tuesday, June 28, 2011
Today, I'm going to do something a little different. I want to tell you about a great book I just read, called "The Anti-Romantic Child," by Priscilla Gilman.
"The Anti-Romantic Child," by Priscilla Gilman, is a joy to read. There are an awful lot of autism memoirs in the field these days, and I have read dozens of them. Gilman's book stands out in that her language and choice of words, as well as her choice of ancedotes to share with us, really bring her son Benj to life. When I read most autism memoirs, I can relate (despite not being a parent myself, but having heard the story many times) to the parent's struggle to understand what autism is and to cope with the autism diagnosis. I enjoy reading about each unique child, and their specific strengths and weaknesses, often comparing them to my own.
But very rarely does a child jump off the pages of a book and have me laughing and smiling and pulling for him as much as I did for Benj in Gilman's book. I was proud of him when he did something right, cheering for him when he was struggling, and awed by his disposition and personality. By the end of the book, I wanted to meet him and witness his joy, passion and exuberance for life personally.
Priscilla Gilman had always envisioned a perfect life with her husband and child, a romantic life of the sort she read about in her childhood fairy tales. And at first, it seemed as if she was going to get it. But when the traits that Gilman and her husband thought were so cute and charming turn out to actually be symptoms of a disorder, a lot of things have to change. Benj is diagnosed with hyperlexia, which carries many of the same symptoms and challenges as an autism spectrum diagnosis (hence the comparison in this review).
Gilman and her family jump into finding ways to help him, and ultimately succeed. But the book is not so much a how to book about "saving" a child from the pathos of a disorder as it is a love song to her child. And a beautiful one at that. Could it be that the story of the anti-romantic child is a romantic one after all?
I enjoyed reading about how the family came together to help Benj, and thought that Gilman did a great job focusing on the positive traits that made Benj unique, while still us giving us a good portrait of how challenging his difficulties are. "The Anti-Romantic Child" shows us how wonderful, quirky and delightful our special needs kids really can be, and shows to the non special needs acquainted world that different doesn't always mean bad. Well worth a read.
Get your copy today on Amazon
Thursday, June 9, 2011
On Sunday, we left around 11 to go to the farmer's market in Brattleboro, and then meet Rachel, a friend I have known a long time online. She also has Asperger's and writes the blog Journeys with Autism. The farmer's market was lovely. Not much there as it was a special Sunday market and a lot of the vendors couldn't make it. But the ones that could were interesting indeed, and the area they had it in was so very lovely. I got some rugelach for Grandma that she really liked, and some maple candies, for Marion and Nate.
We then went to meet Rachel. Her house was easy to find. She has the most amazing and beautiful gardens outside. Lots of wonderful purple flowers. We sat on her front porch and talked a while, and then she let us try the Thumper massager she had.
We were going to do a walk in the Retreat area of the town, but when she mentioned that
it was only a 10 minute walk to New Hampshire from her house, we just had to do it. I love the idea of walking to another state. Rob had just biked to Connecticut that morning (2 miles from my Grandma's house), why not walk to NH?
It was a lovely walk through town and over the Conneticut River. After, we sat on the benches by the co-op for a bit, and I also got to see a street musician in tie dye playing the Beatles right outside the co op! That was awesome.
After a very pleasant and enjoyable couple hours with Rachel, Rob and I sat on her porch for a bit to regain energy, and then decided to stop in Amherst on the way back. Well, also at Whole Foods cus I had a hankering for that banana peach mango sorbet, and needed some bottled water. We got crepes in Amherst....me to photograph, him to eat, lol.
So now we are home, and it is good to be home! But it was a great trip and worth doing. All the factors came together to make it work out. Next, my brothers are coming to visit, and in July, my mom. So this summer shall be an interesting one, it seems.
Also, PS to the weather gods - this heat wave can go away anytime it likes!
Thanks for reading!
Tuesday, June 7, 2011
The whole parade and all the parade viewers came together as one and walked together to the festival site. It was a mass of people. There were many, many cows, donkeys, sheep and even a pig to view when we got to the festival.
There were also a potpourri of stands with businesses selling things or promoting themselves. It was kind of laid out in a disorganized manner, and you felt you were going to be literally crushed with people in some parts. So the first part of the festival was not that that great. Fortunately, though, we discovered the majority of the festival, the best part, was at the bottom of the hill, in a much more spacious and organized area.
Once we got to the bottom of the hill - courtesy of golf carts that ran up and down in a loop, a wonderful feature - I felt much more relaxed. The Brattleboro Retreat was a beautiful area. Booths were set up in a big field with a lot more breathing room, in a circular fashion. Lots of eye candy and interesting things.
We walked around the circle, Rob stopping to try various food items and me taking pictures of everything along the way. The booths were much more interesting than the ones at the top of the hill. There was a tent for performers, a big play area for kids, and a giant inflatable ten foot tall cow walking around. There were crafts and cow related things for sale. Of particular interest was the circus arts demonstration. That was pretty amazing to watch!
There was a rock wall and a giant trampoline, and best of all, free water! I have never been to a festival that had free water before, usually they gorge you on it. Free bottles of Vermont Natural spring water.
After we had spent 3 or 4 hours at the festival, we were spent, and retired to a bench to figure out what to do next. As it was still relatively early in the day, I asked someone at the information desk if there was a scenic drive of some sort that we could do to continue our stay in Vermont. He suggested we go up Route 9 about 15 miles, where we would get to the top of a mountain and look-out called Mount Hogback. So we did, and it was beautiful! Trees for miles around.
Now I know why they call it the Green Mountain state!
We saw a sign that said "Molly Stark Trail," which was apparently a scenic byway that went all the way from Brattleboro to Bennington! So Rob said "Why don't we go to Bennington?" and we did. The ride was beautiful, and we passed through lots of interesting small towns, and saw lots of trees.
We walked around downtown Bennington a bit. It was pretty small, but had a downtown that you could walk around. Lots of beautiful buildings. We didn't actually know where we were,
in relation to anything else, so we were surprised to find, upon consulting some maps in the car, that we were actually very close to the New York border.
We did end up accidentally crossing the NY border, which was kind of fun as we totally weren't expecting it. All of a sudden we see a "Welcome to NY" sign, ok, wrong direction, ha.
I got the Albany country station, WGNA I think, so I was happy about that.
We then went through the Berkshires to get back to Springfield. What an unexpectedly BEAUTIFUL trail! We went on something called the Mohawk Trail, from Williamsburg to Greenfield. It was very steep and twisty but beautiful. We even got stuck behind a tractor at one point, lol.
I think this was somewhere in the Berkshires, although I don't exactly remember. It very well could have been Bennington, but I don't think it was. Wherever it was, it sure is pretty!
It took 2 hrs to get home but was all worth it. We were gone 9am-8pm , a long but very satisfying day!
Next... Brattleboro Day 2
Well, if I am to write anything at all about this trip, it will have to be in pieces, as there is so much to write. Let's see if I can start somewhere.
Rob and I left for our trip to MA and Vermont at noon on Friday. Stopped at WF to pick up a few things in Portland first. Beautiful day, 60s, sunny, non humid. Made great time , 3 hrs, to the WF in Hadley, MA. Listened to my Hermans Hermits radio CD from WMPG on the way there, which really helped. Weather was just as nice when we got to MA.
The WF (whole foods) in Hadley was much smaller and different than I remembered it. I was very dissapointed by it and very nervous in it at first. I did not want to spend much time in it at all. Their selection of everything was like 1/4 of what our WF has. I am so glad and lucky we have such an amazing WF. I got some banana peach mango sorbet from their gelato place which was quite good, so that part was good. We met my friend Pat sitting on the tables they had outside, which turned out well. We spent an hour with her and it was quite pleasant. An intellectually stimulating, engaging conversation. She also gave me a copy of the book she had written.
From there we went to an ice cream shop called Flayvors, which was on a farm only 2 miles away. They make their own ice cream there, and have cows outside you can pet and take pictures of. You can literally eat the ice cream while petting the cows it came from, and we did.
Rob had the grass (asparagus) flavored one, which he said was actually quite good. I got my picture taken with the cows, which were even better than the ones at the parade.
I took a lot of pictures.
We walked around for an hour and then drove the 25 minutes to Longmeadow, where my grandparents live. After chatting with them for a bit, we went to bed at what was for me quite an early hour, as we had to be up at 730 for the cow festival in Vermont the next day.
Not a bad first day at all! More to come.
Monday, May 30, 2011
I have as usual been obsessing over some very ridiculous things to the point of questioning even what the point was of activities that I enjoy. As usual, I have been over planning to the point of losing the meaning of why I was planning in the first place. So I lied down and thought for a while. Let my thoughts roam free.
At first all I could be was terrified of the void out there, of the big, empty void that this world would be if we didn't attempt to make sense of it in some way - with our routines, with our likes and dislikes, with what we choose to put our passion and energy in. Ah, the way we define the world and our place in it is an interesting game, isn't it? So different for every person. And if I may say so, so infinitely more challenging when your life is limited by any kind of disability and you have more time to think about your life than ways to live it!
But then a few people popped into my head. And they made me smile. And they felt real. And I realized that I felt happy in their presence, even in the face of other problems. So I realized that connections with people, especially certain people, are the first thing that absolutely makes sense to me.
I thought for some more, what else? Nature. Not in all circumstances, but in certain circumstances, being in beautiful spot, especially by the ocean, just makes sense. It bestows an inner joy in you that can't be taken away (well, except by certain weather conditions). It makes you feel whole again.
What else? I wanted dearly to say food, as that would have been, well, almost my entire answer only a couple years ago, but I have had so much trouble with food lately that I couldn't even pick one thing that reliably brought me joy. This saddened me. But then I thought some more and realized I could broaden the category to "momentary sensory joys." Because I am a very sensory person. My mood, sense of being, and sense of place in the world - all affected extremely by my senses. But it is the occasional things - the feel of wind in your hair on a beautiful spring day, the taste of an amazing piece of food that happens to be agreeing with me on any particular day, music, a joke that someone tells that makes me happy, the eye candy and visual and mental stimulation of going someplace new and seeing new, interesting things - these things may be simple and small, but together, they make up something very important in life.
Music - that came next, because music, at least music that I like, has always been able to transport me to the most amazing, wonderful places, for most of my life. The joy of getting lost in a good song on the radio, of connecting with the emotions of a song, of getting swept away - this has always, fortunately, knock on wood, been a constant.
Finally, the sense of joy from writing a good piece that I feel satisfied by - that fills a special place in my heart, even if doesn't happen often enough. And photography - when I remember why I'm doing it - not to get the most pictures or the technically best pictures, but to tell a story that I can use to then connect with other people - that brings me joy too. So creativity, you might say.
Buddhists, if I recall correctly, have their Eightfold Path. So this here will be my Fivefold path. Subject to future moderation if need be.
When I start wanting things I can't have, and being overwhelmed by what I do have - yes, it seems weird to be able to do both at the same time - when I start thinking of material things or comparing myself to what others would do - these, at least for the time being, are the things I need to come back to. Everything else can just fall away because it's not important.
Other things to remember
I need to know that the absence of any of these things is only temporary and means it is leading to the presence of it, as life operates as a kind of pendulum, going back and forth. It would be an error to think that absence was ever permanent, for absence is what makes black black and white white - their very definition lies in what they are in relation to each other.
I also need to remember that all of these things do not have to be present at once, in fact they usually will not be. But at least one either will be or won't be far off. Remember, absence is a sign of good things to come.
So I will try to think of life and my daily life in these terms, and if I can succeed even 50% of the time, my life will be a lot simpler.
Now maybe I can go to bed =)
Sunday, May 22, 2011
I have been planning a trip to Vermont to the Strolling of the Heifers Festival in Brattleboro, with my friend Rob. When he told me last Thursday that he was interested in traveling somewhere this summer, my brain went onto 150 mph and wouldnt stop for 2 days, researching, imagining and planning all the amazing things we could do.
As a result, I got quite overwhelmed, quite quickly - although I didn't realize it at the time.
I went onto a website for New England festivals, which is where I found this one.
Then I went into a frenzy of planning, not only for this festival but for all of the other many festivals that will be happening in Maine this summer, that my friends and I have already made plans to go to.
There are few things that I love more than festivals, so that is not the problem. But I think it is like when I was a kid and my family would go to amusement parks. I would always unexplainably start crying in the car on the way there. I realize now it is because there was SO MUCH to do and think about, and I wanted to do it all, that I got overexcited.
Now I am trying to remind myself that it is much better to pick 1 or 2 things you want to do and do them well, instead of having your hands in every pie possible.
This reminds me of an analogy, though.
When Cold Stone Creamery was open in Portland, I went very frequently and loved it.
The first several times, I got every topping I possibly could on my ice cream. Why not? They were there. Waffle cones dipped in chocolate? Check. Sprinkles, M&Ms? Check. Hot sauce? Check. And I'm sure the first time I enjoyed it , that I won't deny, but you have to admit you lose a little something in all that hoopla on top... like the ice cream. You can't really taste it with all that stuff on top. And they have REALLY good ice cream. Some of the best I've ever tasted.
Wondering why I wasn't satisfied with my ice cream the next time I ordered it, I decided to try something drastic. I got plain ice cream (Birthday Cake, in fact) with not a single thing on top of it. And you know what? It was wonderful. The flavor and nuances really came out in that ice cream. And I realized, to my utter surprise and shock, that it tasted better than with all the toppings. I realized just because they were there, didn't mean I had to have them all to enjoy the experience.
So from then on, when I went, I would get just a kid's size of my favorite ice cream. On Tuesdays, when it was buy 1 get 1 free, I'd get 2 and put chocolate sauce on 1 to have the full experience and a choice, but other than that, I opted for simple.
Just like Cold Stone, just because Vermont and western Massachussets is *there* doesn't mean I have to explore every inch of it to be happy. This applies to the Maine festivals as well, although I certainly still want to do a good share of them. But I don't *have* to.
I calmed down considerably when I realized this. Moderation is the key in any pursuit.
And now, bring on the strolling of the heifers (June 3-5)! Moo!
Saturday, May 14, 2011
But I'm telling myself I'll be okay
Even on my weakest days
I get a little bit stronger
Doesn't happen overnight but you turn around
And a month's gone by and you realize you haven't cried
I'm not giving you a hour or a second or another minute longer
I'm busy getting stronger"
- "Stronger," Sara Evans
"If I had a song,
I'd sing it in the morning,
I'd sing it in the evening,
All over this land
I'd sing out danger,
I'd sing out a warning
I'd sing out love between my brothers and my sisters,
All over this land."
- "If I Had a Hammer," Peter, Paul and Mary
Once in a while, in this life, we are treated to gifts, wonderful gifts that restore our faith in our ability to live on this planet. Gifts that bolster us and tell us we're on the right path. No, I'm not talking about anything you can buy in a store. I'm talking about something ever so much more precious- the gift of human connection.
Human connection is tricky at best. Asperger's or not, humans are complicated beings. But I won't deny that Asperger's makes it much harder. That is why I treasure it when I stumble upon a connection with someone else that feels real, genuine and heartfelt. A connection that I don't feel I'm just faking my way through. A conversation where I'm not just struggling to come up with things to say, but instead have SO MANY things to say, as does the other person, that I can barely keep them all in my head - but it doesn't matter, because they keep changing and growing along with what the other person says, so that the conversation evolves in a wholly organic manner, as all good conversations should. A flowing, effortless conversation - something so rare for me that it might as well be put on the endangered species list.
Does this sound odd to non-Aspies? I'm not sure, because I'm not one of them. I wonder if these sorts of conversations are easier for them. I think they must be. It is of course hard to tell how much is truly easy for NTs and how much is just posturing!
But tonight, I had this rare species of a conversation with a friend on Skype. As the best conversations seem to be, it was spontaneous, arising out of the need for me to ask a question on a topic unrelated to the conversation we ended up having. This question ended up reminding me of another topic, which in turn reminded her of something, which reminded me of....And we kept going. And sooner rather than later got into some rather meaty, important topics of a significant emotional and psychological nature, which is my favorite kind of conversation.
I was talking about some unpleasant incidents from my past, but for once, I didn't do it with any signs of anxiety. I didn't do it with desperation in my voice. I didn't have "RESCUE ME!" written all over my face. Needless to say, that made for a better conversation. I can count on one hand, hell maybe one finger, the amount of times I have been able to talk about these topics in a laid back way, however. Just sitting back in my chair, pondering my life with a friend in similar circumstances. I love that version of laid back me. Can she come out and play more often?
My friend told me she thought I was on the right path. She said she thought I was doing everything right, and that I was being really smart and thoughtful about how I chose to do things. She reminded me of how far I had come. And for once, I believed her. I believed her when she said I was doing the right thing. I think we all know how hard it can be to accept positive feedback when we're used to negative.
So, you know what? At least for tonight, I think I'm okay.
Tomorrow, though, may be a different story. But then again, maybe not.
Sunday, May 8, 2011
More at http://www.facebook.com/media/set/?set=a.546935525075.2048825.41400579&l=81426d3929