Tuesday, June 29, 2010
I went to the doctor today.
He prescribed ear drops. I told him "no thimerosal". He didn't know that there is thimerosal (toxic, poisonous, deadly, nerve-damaging, never-NOT-a-neurotoxin-mercury) in prescription ear drops. (Yes, he knows the seriousness of mercury; he is close to autism.)
Of course, I get to the pharmacy to pick up my prescription and YES, he has written me a prescription for an ear drop that contains thimerosal. The employee behind the counter had to pick up the box and read the list of ingredients to answer my question. They don't KNOW there's a neurotoxin added to the drops that are intended to be put in your ear. *gasp*
Excuse me while I scream.
There is a similar product, the pharmacists tell me, that is not a suspension (sidebar: a suspension, which my doctor prescribed, is the version which must be shaken, probably to properly distribute the heavy metal mercury perservative in each dose); it's a SOLUTION, and it does not contain thimerosal.
I came home to look up the ingredients on both to make sure the pharmacists were telling me the truth. And now I have a new dilemma.
I'm shocked to read that one of the ingredients, neomycin, is associated with HEARING LOSS. And they all want me to put this IN MY EARS?
What's a girl to do???
Y'all, mercury is still in our prescriptions and vaccinations, and people think it's not. Neither our doctors nor our pharmacists memorize this information. Read labels, package inserts, and ask questions of your doctors and pharmacy staff. No one does that for us these days.
Monday, June 28, 2010
A new show to NBC this season features trainer Jillian Michaels in "Losing It With Jillian". Tomorrow night's show at 8 pm EDT features a precious family we know in real life:
And I'm green with envy. I need someone to light a fire under my tail in the shape-up-weight-loss department. Maybe tomorrow night's show will be just the inspiration I need to really get started.
We stayed approximately an hour down the road in Evansville, Indiana (see previous post about Evansville) and headed to the theme park on a Tuesday afternoon after a morning in the hotel pool and lunch in a restaurant. Ticket prices at Holiday World are discounted in the afternoon and we were hoping the temps would be a bit cooler during the extreme temps the region was experiencing.
My sister led the way from our hotel in her vehicle; I followed in mine. My eldest daughter went to the theme park with my sister's family last summer. She told me that you drive on little curvy roads for a long way out in the middle of nowhere, and in the middle of a cornfield, you suddenly see the park. She was right.
The narrow two-lane road is curvy and the area is rural. There are little churches and cemeteries (reading the Santa Claus cemetery sign creeped me out a little bit). The church closest to the park is, appropriately enough, named for Saint Nicholas. If you didn't know there is a gigantic amusement park on that road, you'd never guess that there is one.
Arriving at 3 pm has advantages and disadvantages. One of the advantages is parking very close to the entrance to the theme park. We found parking spaces just beyond the handicapped section near the front entrance. (There is a tram that will transport you from the massive parking lot to the entrance of the theme park if you park way out in the back 40.)
Another advantage, on this particular day, anyway, is that after we paid, we headed for a big roller coaster, The Raven, and walked right on. No waiting. We did not wait for a single ride the entire afternoon and evening.
The disadvantage in arriving at 3 pm is that there is not enough time to see and do everything. My sister's children are little, and they needed the short days (which benefitted my daughter who is on the autism spectrum as well), but we should have done what they did and arrived a day earlier and attended TWO half-days in a row or one or two full days.
The park houses a huge water park and a gigantic amusement park with rides for any size. There's a section for the really littles, the littles, and rides for individuals 48" tall or taller.
The admission cost is based upon your height. My children were charged adult prices because they are tall enough to ride the adult rides. At the ticket office, the attendant asked me if we had any coupons - NO, I live EIGHT HOURS AWAY, where would I get a coupon? (She told me I could get them at Wendy's - well, I'm tired of Wendy's - it's one of our few food options on a GFCF diet, and while we were in the area, we were enjoying NOT eating at Wendy's - please see my post on a gluten free Evansville.) And they wouldn't give us a dollar off without a coupon, even though we had no access to them. That was bothersome in principle, because we're not locals, and we traveled approximately 500 miles, although it was a small discount.
Water, soft drinks, and sunscreen are included in the admission price. Instead of paying movie theater prices for a soft drink or Gatorade during our visit to Holiday World, we walked up to any food service area or drink station and helped ourselves when we were thirsty. And on a day when temps and humidity were unusually high, we did that a lot.
Holiday World is FOOD ALLERGY FRIENDLY. I downloaded a list of allergen free foods served in the park before we left so that I knew where we could purchase what food item. At the end of the evening, my daughter w/ autism (and food issues) ate an order of Ian's chicken nuggets AND an order of Ian's turkey popcorn dogs made especially for her. There is one big problem with the food choices there: the french fries are coated in wheat to keep them crisp, which means that one of the easiest foods to prepare gluten free is NOT gluten free at this theme park. And it's a favorite food of so many kids who are gluten free... *sigh*
Lewis and Clark Trail
There's a place to cool off if you need to. I posted a picture here. This ride got me soaking wet - I was in the spot to get all the showers and was absolutely drenched when I got off. That was a good thing on such a hot day.
We didn't wear swim suits. We didn't plan to go to the water park part of the park. We should have worn swim suits, anyway. There are enough water features and water rides that a swim suit is necessary. Everyone else seemed to be wearing swim suits. Because we weren't planning to do the water park, I had no beach towels, which was a mistake. We needed beach towels. This mama was *soaked*.
Wear comfortable shoes. They're an absolute necessity. A backpack is a good idea, too - we had one small one. If I'd have been able to find two small ones, we would have used them. And if I'd have seen backpacks for sale in a gift shop, I'd have bought one. (There may be backpacks in the gift shops, but my daughter w/ autism wasn't too keen on going inside the gift shops, so I didn't get much time to look for one.)
Holiday World has a facebook page HERE.
Sunday, June 27, 2010
If you're traveling through Western Kentucky, particularly on I-24 and Paducah, there's a little health food store worth marking on the map should you find yourself traveling and in need of a loaf of GFCF bread or a GFCF "ice cream" treat or some other item.
I think someone should publish a book of stores that sell food items for the food allergy community. In the meantime, when I find something worth sharing, I'll put it here, on my blog. If you find something worth sharing, send it to me, and I'll host your tip as a guest entry on my blog.
Here's entry #1:
Heath Health Food Store is a little gem that is close to the interstate. They had three flavors of "ice cream" made from coconut milk by So Delicious and Udi's GFCF bread, among other items when I was there in June.
Saturday, June 26, 2010
Friday, June 25, 2010
Thursday, June 24, 2010
The service at Biaggi's was superb. I felt tired from the drive and completely underdressed for the restaurant, which is fancy and beautiful inside, although lot of customers were as casually dressed as I. I asked the hostess if we were dressed appropriately and without batting an eye, she put me at ease with a big smile, and said, "You're all just fine!!" while she motioned us with her arm to follow her to our table. Jackie is a wait staff extrordinairre - she is amazing. Our water glasses were never empty and we never had to ask for a refill. We were treated like VIPs.
For lunch the next day, my whole family (parents, sis's family, us), 10 of us, headed over to Cheeseburger in Paradise. They, too, have a gluten free menu that is not just a piece of paper - it looks like the other menus - but it contains the same information that restaurants who give you a piece of paper as a menu. It lists the burgers and reminds you to order without the bun, for example. Still, having a separate menu is one way to spotlight for the staff the fact that we're ordering something a particular way for a reason - it lets them know the importance of the gluten free +++ part. Judy was our waitress, and she was excellent, too, not quite as on top of the water situation at the table as Jackie at Biaggi's, but there were 10 of us at this table, not just three. The strawberry lemonade there - well, I've never described lemonade as "rich", but this one was rich! If you go to Cheeseburger in Paradise, consider ordering the strawberry lemonade!
And if you're considering a vacation that has GF+++ friendly options, Evansville is one place to look.
Monday, June 21, 2010
Sunday, June 20, 2010
Amazing! That makes a huge difference for us! :)
What is a family to do?
The thing that REALLY irks me about the Fairfield Inn is that, according to the employee who answered the phone at the property I phoned for info, if no one requests a refrigerator, they just leave them in the last room where there was a request. If they place guests in that room that happens to have a refrigerator, even if those guests didn't request it and don't NEED it, the Fairfield Inn will NOT remove it and deliver it to a family who DOES need it to hold food for a family member with food allergies. That is bad policy. Why would the clerk on the phone even TELL a caller that info - basically, if you don't get there at the right time, you're sorry-out-of-luck, even if the guests in the rooms with the refrigerators are not using them.
Fairfield Inn did mention we could choose to upgrade to an "executive" room that comes with a refrigerator at a higher price.
Comfort Inn said, "sorry out of luck". They don't allow guests to reserve refrigerators. They have a few that are first come, first serve.
I don't understand this kind of "SOL" or "please spend more of your money to upgrade" customer service.
If your hotel property does not have enough refrigerators to go around, then a) go buy another one to make sure a traveling family can chill food for a family member with food allergies or b) upgrade that family to the "executive" room at no extra charge to them.
Saturday, June 19, 2010
Friday, June 18, 2010
I caught the unusual call on video because my son was at bat (he made it to third base):
We're all so proud of them!
We were just a little bit excited as we realized we won the game:
Thursday, June 17, 2010
We were behind until the bottom of the 5th inning, when we managed to tie the game and then pull ahead. (We play six innings in our division.) And at the opposing team's last at-bat, we got 'em in a three up, three down situation, and won the game!
Our boys are in the championship!
Wednesday, June 16, 2010
Tuesday, June 15, 2010
Monday, June 14, 2010
We must become unexpected experts in areas we never imagined. We parents often need a different set of experts to guide us through each topic. : Educational development and academics; life skills; relationship skills; non-verbal communication; verbal communication; emotional development; social development; mainstream medical treatment; alternative medical treatment; gross motor development; fine motor development; auditory processing; visual processing; I could go on and on.
Among all the new areas of expertise we parents of special needs children have to learn, Joan Broggi, in Bursting with Joy, writes about one aspect of learning that is often an unexpected bonus: the lessons that we learn from our children with special needs. They are wonderful teachers; and Broggi reminds us to look for the great joy in our experiences.
Parenting a child with special needs is an interesting journey.Joan Broggi understands. She's a mom to an adult son with special needs and his sibs - she walked the path a few years before I did. And she confronted all of the emotions, the roller coaster of ups and downs, ahead of me.
Broggi's approach in her new book, "Bursting with Joy," is to journey through the stages of grief, "adapting some of her chapter headings from Elisabeth Kübler-Ross's book, 'On Death and Dying'", followed by her own chapter about joy.
I am cognisant of the fact that I go through stages of grief because of autism. I know that getting to acceptance doesn't mean I don't revisit anger or denial sometimes. I am able to recognize and talk about the blessings and gifts we've received because of autism, gifts we would not have received without autism. And yet, focusing on the blessings and the joy as Broggi learned to hasn't been a huge focus for me in the middle of all of what sometimes feels so much like work, a heavy weight.
"Bursting With Joy, Discovering Universal Truths Through Our Special Son," is an easy read about a topic that is not simple. Broggi is honest, authentic with the reader when she shares experiences and emotions that are sad, disappointing. She offers hope as she describes how to take control of what is within my control (my attitude - something I fight daily).
Broggi takes the reader through her stages of grief and takes us beyond grief into joy, and she reminds me of the importance of having a positive, joyful perspective. She's an excellent teacher. She knows how I feel; she's been there, too. I relate to her experience. I'm glad that"Bursting With Joy, Discovering Universal Truths Through Our Special Son," is now a part of my journey. You gave me a special gift. Thanks, Joan. ;)
Bursting with Joy retails for $12.95
Paperback: 144 pages
Publisher: Ferne Press (February 15, 2010)
Joan Broggi Books has a facebook page.
Sunday, June 13, 2010
Then, at a disability awareness event, I was given a set of EAR PLUGS and a pair of NOISE CANCELING HEADPHONES to wear. My child with autism was given the same items. We were to interact with one another from a perspective of a disability - and each of us were assigned a hearing impairment.
I was amazed at the self-awareness I discovered. I rely heavily on listening to my daughter.
I used to watch her all the time, and I knew that my enhanced mommy radar was keeping her from being responsible for watching those around her. Her experience was, "I don't have to check in visually to make sure I'm with Mom in the grocery store; Mom watches me and reminds me when I'm too far away." Or, "I don't have to check in visually to make sure Mom is listening when I'm talking because Mom is so in tune to me."
I was creating and contributing to learned helplessness. I had to learn to watch her closely, yet disguise my radar and pretend that I wasn't always watching her. I had to shift what she should be responsible for - in terms of attention, paying attention, sharing attention, shifting attention -over to her.
During this disability awareness assignment, when a good deal of my hearing was shut off by ear plugs and head phones, I realized that instead of watching her all the time, I simply switched senses. I began listening to her more closely. I realized that she counted on me to be listening more than I imagined. Our parent/child dance includes her counting on my listening to her! And my not being able to hear little things, like her footsteps, to tell me if she'd wandered in another direction, raised my anxiety and made me want to monitor her more closely with my vision, a compensation of one sense by another.
I've begun to make adjustments again. Oh, I still watch her closely. And I still listen closely. I pretend not to, though. I'm trying to refrain from acting on my radar in situations where my daughter can take responsibility for her own watching and listening (attention sharing, attention shifting).
I'm a work in progress.
I blogged about mommy radar HERE and HERE.
Saturday, June 12, 2010
First of all, every idea in the book has been tested and has been proven to be successful. Each of the 100 ways to differentiate instruction is pictured and described. The reader doesn't have to guess what the finished product looks like. "How to" directions are provided in great detail. Kluth and Danaher provide examples, a "Keep in Mind" section to spotlight other uses or aspects of some of the ideas. Readers are given a References/Recommended Reading section with *each* idea (no need to flip to the back and try to sort through a long list of references because the related references are right on the page with the idea), with quite a few new-to-me references (and I've read a lot over the past 10 years). Many ideas are low-cost or are made with supplies you already have at home or school; Kluth calls 'em "dollar store differentiation" ideas. The authors provide a Vendor section with each idea so that users know where to purchase materials needed to complete each idea. And finally, Kluth and Danaher give the reader a list of related web sites at the end of each idea. Kluth and Danaher thought of everything and have organized it in a way that maximizes my time. I've not seen a book like it (and I've seen a lot of books about adapting material and differentiating instruction for students with unique learning needs).
The book is heavy and lies open, flat, without my having to weight it down. (I like that.) So many of the ideas have me thinking, "I should have thought of that." They're simple, when I think about them, and make sense. I need a pad of sticky notes to bookmark pages. I need a notebook or electronic notepad to keep a list of the ideas I want to try.
Most of the ideas are simple to implement, yet, I'm so glad I got this book now. NOW (June) is the time to BUY this book. As a homeschooler, I have a little bit of time before we gear up with school again at my house, time to gather materials, order a few items, so that I can implement some of the ideas in late summer or fall. For those of you starting school in August or September, summer is a great time for planning, and this is a wonderful resource to help parents/teachers be better facilitators of all things academic and some things social, including relationship w/ self and aspects of executive functioning.
I don't know anything about co-author Sheila Danahan beyond what is written in the "About the Authors" page. She's an administrator and educator in Chicago Public Schools.
I do know a lot about co-author Paula Kluth. (When my daughter was in public school, I purchased Kluth's books for my daughter's teachers.)
Paula Kluth is well-known among special ed parents and professionals in public schools. Kluth was a public school teacher who has a natural instinct, natural gift for grasping the importance of inclusion, particularly of children with autism, an the necessity to adapt materials and differentiate instruction so that all students learn. She writes and markets her wisdom to school-building schools with inclusion as a focus.
She's amazing. Her creativity never ends. If you have an opportunity to attend one of her presentations in person, GO.
She's an amazing speaker (I've seen her three times). She has me believing that I can do this stuff, too, for my daughter, and when my daughter was still in public school, had me believing that if only I could get my daughter's teachers there to hear her, Kluth's enthusiasm and creativity would rub off on them, too.
As I chat with parents from the homeschooling world, particularly those homeschooling children with unique learning needs, I tend to discover that homeschoolers don't know about the wisdom and creativity of Paula Kluth.
Paula Kluth's web site, which is a super resource, is HERE.
Paula Kluth's facebook page is HERE; the 1000th fan will get a copy of this book and two more (and so will the person who referred them, so if you're the 1000th fan, tell 'em I sent you, please).
There is a facebook page for the book HERE, where Kluth has been posting pages/ideas from the book.
From Tutor Scripts to Talking Sticks, 100 Ways to Differentiate Instruction in K-12 Inclusive Classrooms by Paula Kluth and Sheila Danaher
Paperback: 224 pages
Publisher: Paul H Brookes Pub Co; 1 edition (March 30, 2010)
Friday, June 11, 2010
My usual review books and personal reading choices are marketed to either educators, parents, or both (and most often about autism), or novels of fiction written for a Christian audience. Fallen Lotus Petals is a novel for adults written for a general audience. This one's different in another way: I know the author. We worked for the same big-red-flash company when my husband and I lived in the Los Angeles area in the '90's. I recently discovered Jordon Papanier on facebook via another co-worker and am delighted to read that he's written and published a book (and did the artwork for the book cover, too) - impressive!
Fallen Lotus Petals, by Jordon Papanier, is a novel of crime and suspense, about FBI agent Tom Larson's personal and professional life, as he encounters drug and human trafficking, murder, domestic abuse, a cross country move, and the discovery of a new type of gun, made from plastic that isn't detected on scans coming into or leaving the country.
When I pick up a novel that I can't get into right away, I have a difficult time finishing it. If the plot and characters in the first chapter or two don't pull me in, I put the book down and don't pick it up again.
When I picked up "Fallen Lotus Petals", I read eight or nine chapters without stopping. Papanier hooked me from the beginning; I went to New York with FBI Agent Tom Larson, and then to Los Angeles with him. The storyline is engaging; Papanier's vivid descriptions take me to some places I've not been before, and some I have, and I can see them all in my mind. (I hadn't thought about Tony's Restaurant in years - what a fun memory. And I could see in my mind the spot where Tom was involved in a car accident. I haven't been to either place in years.)
In "Fallen Lotus Petals", Papanier writes about real-life events that members of our law enforcement encounter every day, including mental illness and murder, and including abuse of one human being by another. Papanier's main character, FBI Agent Tom Larson has a soft heart and a solid sense of right and wrong when it comes to tracking down criminals. Larson is is one of the good guys, protective of the weak, aggressive with the bad guys, a righter of wrongs, a man who is willing to risk his career and break the rules in a creative way in order to give girls imprisoned in human trafficking a chance to return home and start over. (That part of the story had me thinking about a ministry from one of our church organizations that's aim is to fight human trafficking.)
(I wish I were on the beach reading it, though.)
I enjoyed the story.
Jordon's a fantastic writer.
Here's a trailer about the book:
"Fallen Lotus Petals" is a novel for adults. It contains adult themes, a little bit of adult language (not much) and two brief but descriptive scenes of intimacy between the FBI agent and a woman he has just met. (There are a few misspellings and some misplaced quotation marks in the self-published book - Jordon, I'll proofread your next novel if you would like for me to--you *are* writing another one, I hope. And I think you should blog more. Your facebook updates either crack me up or send me pondering, and either way, I suspect you'd develop a big blog following if you blog more often.)
Fallen Lotus Petals is available from Amazon in either paperback or electronic format, ranging from $10 - $16 in price.
Disclosure: Jordon Papanier sent me a copy of his first book, Fallen Lotus Petals, to review. I am not financially compensated for my reviews and am not obligated to provide a positive review.