Sunday, April 2, 2017

Elopement "Fun" at the Color Run...

Let me tell you a story about elopement, and no, it’s not the romantic definition. 
First, one of the definitions of elope is “to slip away or escape.”  Elopement is quite common with people affected by autism.  Lulu is no exception.
I work for the Franziska Racker Centers, and we support individuals with developmental, mental and intellectual disabilities.  My Lulu benefits from the supports that she receives from this agency.  It’s a fantastic place to work, and generally speaking, everyone is wonderful there, from the folks we support to the staff members who work there.  I really couldn’t ask for a better place to work.
At Racker, there is always a big emphasis on working together as a team, whether it’s a departmental team or an agency-wide team.  Today was the Color Run, and I began working on forming this year’s work-sponsored team back in January.  We did this last year with a team of 34 people.  This year our team was up to 90, which is simply inspiring to me. 
I was torn as to whether or not Lulu should participate in this event. There were just so many people there, and it was pretty likely that she would get overstimulated.  But then there's the argument that she should be included in events like these because it's her right and she deserves to have a good time just like everyone else.  I even talked to her behavioral therapist about it.  After talking with some of my co-workers, they all agreed - there are 80+ people who will be there to help, who want to help and who "get it."  So Lulu had a crazy outfit on just like the rest of us, and she even picked it out herself!!
I loved seeing everyone today – staff, the people we support, and family members all participated in this event.  Everyone encouraged each other, and there were lots of laughs and hugs.  Lulu made it the entire way, and though she wasn’t a fan of the slight hills, she seemed to like to get color on her.
Fast forward to the end of the event, and Lulu is just….done. John had her by the hand one minute with me standing right next to her.  He opened a packet of color and took a few steps away.  I turned to watch, then realized that Lulu wasn’t with him.  She had taken off that quickly…and there was a sea of white t-shirts as far as the eye could see.
I tried to remain calm, yelling to John that Lulu was missing.  One by one, my co-workers realized what was happening, and they all began to disperse in different directions.  Because of where we work, they all knew the potential severity of the situation…they all knew that Lulu was non-verbal, and would not come when her name was called.  Some knew that she was drawn to bubbles, water, music and bounce houses.  They were on top of the situation from the word “go.”
I was taken over to the Lost and Found tent where I showed a police officer her photo.  I have never been more grateful for technology.  There were many questions – what does she look like? How old is she?  What is she wearing? The police officer and the folks at the tent looked physically pained when I mentioned that Lulu was autistic and non-verbal, and that the likelihood that Lulu would respond when called was very slim.  Around that same time, I mentioned to a co-worker that Lulu probably wanted to leave, and then she ran off to the parking lot to look there.  After a few minutes, received a call that Lulu had been found by one of my co-workers...and later Annie told me that when she saw Lulu at the car that she pinned her down and told her not to run away ever again.   
I have never been more frightened in my entire life.  And I’ve never been more thankful to everyone who stopped what they were doing to help, whether it was to look for her or to keep me from falling apart. 
The African proverb, “It takes a village to raise a child” is not quite accurate.  In Lulu’s case, it takes a whole damn army.  And I am grateful to have my work army beside me.

Tuesday, January 17, 2017

to the woman at wegmans...

To the Woman at Wegmans:

Sometimes you just feel like you can't catch a break.  You plan for what should be a simple outing, and when you get to where you are going, everything falls apart. Take this real life scenario from a couple of years ago, for example:

I needed to buy groceries, and so I planned a trip to Wegmans.  Having no childcare that day, I put extra effort into what I was bringing with me and into the things I would need to do to make it a successful trip.  I called ahead to Wegmans to make sure that they had adequate staffing to accommodate Lulu, as she requires a dedicated person to be with her due to her adventurous nature (read: she climbs on EVERYTHING).  Having set up a timeframe in which we could arrive, the girls and I headed to Wegmans, where Lulu would go have an hour of play while Annie would shop with me since she had aged out of WKids. We walked in, headed toward the play center, and found out that for whatever reason they were not able to take her as they had originally planned.

<Queue the hysterics!>

First I explained to Lulu that she couldn't go in today because W-Kids was closed.  I said that she would have so much fun in the cart with her sister pushing her throughout the store.

<Ear piercing scream emitted here>

Lulu tried to get into the room by attempting to climb over the half-door.  She cried.  She screamed.  She would not listen to reason.  She just kept looking at me with those big beautiful eyes that were so full of hurt, saying repeatedly, "W-Kids? W-Kids?"  (My heart shattered into a million pieces that day). The W-Kids worker said that she was sorry, and that Lulu could come in next time.  Lulu just kept saying "W-Kids?" as I fought back tears.  Finally I did what I very, very rarely do...I asked her if she wanted to play with my cell phone (I have not allowed her to make my phone a toy for her to use at her whim -- this takes some perseverence on my part!).  She was having no part of it.  

After what seemed like an eternity, I went to my last resort -- I handed Annie a couple of bucks and gave her strict orders to GO BUY HER SISTER A HERSHEY BAR!  She took a couple of steps and, since she was never one to pass up on a golden opportunity, turned around to say, "Sooooo, can I have one too?" Oh. My. God.  Seriously?  I (not so calmly) replied, "Yes, Annie, just pick something out FAST!"  (Annie did as she was told (this was her first experience with actually purchasing something at a store), and ran back to us at full speed, candy bars in hand.  She showed Lulu the candy bar and said, "Laurie, we need to go to the car.  You can have chocolate if you come with me." This took a little coercion but finally Lulu agreed to walk out to the car.

While I was getting her jacket back onto her, this woman who had been standing near the exit just watching everything as it unfolded walked over to me and said, "I just want to tell you that you really are a great mom.  You're doing a great job with her."

All I could do was just look at her.  I was completely dumbfounded.  I had never laid eyes on this person before or since. I thought that anyone watching would be witnessing all of the parenting no-nos that a person could make -- giving in, bribing with chocolate, offering technology as a solution instead of teaching my daughter a lesson in coping and going with the flow.  I thought I was at my parenting worst.  Instead this woman saw me as a parent who was trying to work through a difficult situation with a child who obviously had issues with coping and understanding.  This was a woman who was trying to show empathy...who was trying to show that someone cared...was trying to show kindness.  At least this is how it appeared to me.

I saw this quote a long time ago, but it came roaring back into the forefront of my mind:

Everyone is fighting a battle you know nothing about.  Be kind. Always.

This is just a good rule for life.

So to that woman in Wegmans - thank you for not judging my ineptness to calm my little girl. I am forever grateful for your kindness.  It stays with me even years afterward.

Sunday, October 9, 2016

Next Stop..GameStop

Annie and I were shopping at the mall, looking for a birthday gift for Lulu.  We wandered in to GameStop, and were greeted by an employee who asked if he could help us. We kind of shrugged and said something along the lines of, "we don't know what Lulu wants." I explained that my younger daughter is autistic and that we were shopping for a birthday gift for her tenth birthday.  At that same time, a customer standing there suddenly blurted out that he was also autistic, and began talking to us, giving us advice on what to get for an autistic person. The employee smiled and walked away after seeing that we were comfortable with the customer.

The customer suggested a Nintendo handheld system with certain games that help with socialization and/or developing skills, and went into detail about how they can help people with autism. He then showed us the games and the different systems, and gave us the pros and cons of each system. He really knew his stuff!

After about 15 minutes, the employee returned to where we were standing and asked if we had any questions or if we had our questions answered by the other customer. I let him know that the other customer was fantastic and very knowledgeable.

At that time the customer let me know that he had applied for a job at GameStop and was just waiting to hear. I told him I would put in a good word for him. He then went on to let me know about his experience with the various agencies in my area, and how he had benefited from them, and that my Lulu might benefit as well.

I sincerely hope that GameStop hires this young man. He was able to talk to me about lulu's potential likes, dislikes, and social needs on a level that a neurotypical person simply could not. We need our society to embrace, empower, and employ people of all abilities. 

I have always been very open about my daughter's diagnosis, and occasionally I have wondered if this was the right thing to do. My daughter isn't just autistic...she's smart, funny, and beautiful, and has an energy that is like no other. But autism is a big part of who she is, at least to me. It's led me on a journey to a whole new world. I have met some of the most fantastic people ever, and I've learned who my real friends are. I truly appreciate the little things.

Oh..just in case you're wondering, we did buy the gaming system that the customer had recommended.

Sunday, May 15, 2016

2016 Rainbow World Jamboree

This year, I am a sixth grader, and I was eligible to go to Rainbow World Jamboree!! My mom came with me, of course, because she’s one of my troop leaders. This is a weekend of camping skills competition for Girl Scouts in grades 6-12.  I had so much fun!  

In my group, we had 5 Ambassador Girl Scouts (Seniors in high school) and 7 Cadettes (2 eighth graders and 5 sixth graders, including me). Our color was orange (we made our own shirts!) and we were the Orange Lava Girls. We all go to school in the same district. It was very helpful to be on the same team as the Ambassadors.

On the way to the RWJ!

At the ice cream social:

My t-shirt creation:

For each challenge we could earn points AND we could lose points, sometimes even to sportsmanship.  Even though there were many teams, we were paired up with the blue team (8 girls from the 7th grade troop from our school district - the Smurfettes), and met up at each and every challenge location.  

Practicing our song
At the campfire the night we arrived at camp, we had to sing a song that either matched our theme and color, our troop made up, or our troop changed the lyrics to. Two girls in my troop changed some of the lyrics to “Thank You For Being A Friend” from the Golden Girls. The Smurfettes used the “La, la, la la la la, la la la la la,” from the Smurf TV show.

My troop did the flag ceremony at the beginning of the day, and I got to carry the flag out to the flagpole. It was pretty cool, and I think I’d want to do the flag ceremony again.

The competition that lasted throughout the entire Jamboree was the Scavenger Hunt. We had to find a bunch of things that were on a list that was handed out to each group. We found all but three of the items on our list.

The first competition was Fire Building. In that competition, we had 5 girls competing. Two collected firewood, two built the fire, and one lit the match to burn through a string. We burned through the string faster than the Smurfettes, but their fire was bigger.

-The second competition was Arts and Crafts. We built a volcano out of sticks, string, rocks, leaves, fabric, and a bandana. I crushed up obsidian rocks for ash and came up with the idea to use the brown fabric to cover up the sticks. One of the girls in my troop decided to bring home the stick structure at the end, and wore it as a hat.

Our third competition was Knots. I competed in that one, along with 3 other girls. We had to know how to do the fisherman knot, the arbor knot, the figure 8 knot, the double overhand knot, and the bowline knot. We did those knots easily, and then showed off our extra knowledge. We went before the Smurfettes. I got to teach them how to do the bowline knot, and we cheered them on the whole time.

Our fourth competition was Canoeing. Three girls had to go out and put 2 balls into life preservers, and another three had to go out and get the balls. That time, the Smurfettes got to go first, and we cheered them on the whole time again. When my team got to go, the other team made up a song about us, and it was super cool!

The fifth competition was Shelter Building. We had to pretend we were lost in the woods and had to make a shelter for nighttime, while only having our daypacks and any clothing articles we had. My team made a basic structure out of wood first, and they needed big sticks, so I kept picking up fallen trees 3 times as tall as I am. Then we put our rain ponchos and sweatshirts and bandanas on it to make it waterproof. It was really colorful, and we managed to fit our entire group into it. The Smurfettes made a really cool, tightly knit teepee, and 8 girls fit into it.

Our sixth competition was the Challenge Relay. First, we had 5 girls put together and take apart a tent. Next, we had to get 5 girls, including me, across a 10-foot stretch of grass on carpet squares without ever touching the ground. Third, we had to answer 5 questions about Girl Scouts, which we got all but 1 wrong. Last, we had to put together a puzzle, which took a while.

The seventh competition was Outdoor Cooking. We got a lot of ingredients, including a mystery item, and had to make some sort of food out of them in one hour. The ingredients included Bisquick, one egg, sugar, milk, oats, and one clementine, among other things. We had to bring our own spices, but we couldn’t bring any actually substantial food. We made Ramen noodles with cut up scrambled eggs, minced celery and onions, a biscuit with the Bisquick and milk, a gravy to go with the biscuit that had boiled water and a beef packet, and a yogurt parfait with toasted oats, raisins, the clementine, and some cinnamon sugar on top. We managed to use every one of the ingredients, which got us extra points. The biscuit tasted really good, and so did the noodles, but the gravy was really, really salty. I don’t like yogurt, so I didn’t eat the parfait after the judges said we could eat our food, but the other girls said it tasted pretty good. I wasn’t able to see what the Smurfettes had made, but it looked like the judges really liked it.

We ate dinner and dessert in between this competition and the next. There was a competition with the desserts, and a girl in my troop made cone-shaped no-bake cookies with orange candy melts as lava to look like volcanoes. The Smurfettes didn’t bring in a dessert.

After dinner we had the flag ceremony to take down the flag. The other sixth grade troop from my school district was in charge of that. It was cold and rainy during that ceremony.

The last competition was the Recyclable Fashion Show. We got a bunch of recyclables and had to make it into something fashionable. So we took the GS cookie carton, broke it open, and scored it. Then we wrapped it around our model, the same girl who had the stick hat, and taped it into place. Next, we took the bag that everything had come in and cut the bottom off, so she could wear it as a skirt. For the finishing touch, we took a milk carton and cut it into a crown. She looked ridiculous, but awesome at the same time. I think she kept the crown. The Smurfettes made a ruffled newspaper skirt, used the cookie box as a top and covered it in newspaper, and made a heart belt, hairpiece, and embellishment out of duct tape. The Smurfette in the outfit actually looked really good.

In the morning they presented awards, we got 8 total. We got first place in Outdoor Cooking and Canoeing. For second place awards, we got Knots, the Recyclable Fashion Show, the Scavenger Hunt, the song from the night before at the campfire, and our volcano no-bakes. We also got an award of Sisterhood, along with the Smurfettes, for cheering each other on and not being rude or anything like that, even though we were competing against each other.

I really liked the 2016 Rainbow World Jamboree, and I know we’re going back next year!  Time to start planning...

Sunday, August 3, 2014

Best. Party. EVER!!!!!

My name is Annie, and my mom threw me the BEST PARTY IN THE HISTORY OF THE UNIVERSE!!!!! It was a Harry Potter sleepover party! Best series ever. Not kidding. My mom wouldn't tell me ANYTHING. But I got to help make stuff, and I found the list of candies! (hee! hee! hee!)  See my mom's blog posting for that list!

On the day of the party, I was so excited. Eight awesome friends of mine came, and one of them was dressed up as my favorite character of all time: DOBBY THE HOUSE-ELF!!!!! Once all my friends got to my house, we had the Wand-Choosing Ceremony. I got the wand I had wanted! (Of course, I knew what the handle felt like, so...) 

Then it was time for the Sorting Ceremony. I was chosen for Gryffindor! One of my friends got chosen for Slytherin almost immediately, and he (the only boy) started freaking out, so he got re-sorted into Ravenclaw.


It was then time for Potions class with Professor Snape (my best friend's older brother).  He actually looks like Snape!  And sometimes he's just as moody!  The best thing about him being Snape was that he was the head of Slytherin House, and gave ME, a Gryffindor, 5 House Points.  (Snape is usually really biased toward his own House).  

Next was Divination class with Professor Trelawney.  She read our futures in the tea leaves.  It was so cool.  Mine was something about softball!

Then we had Transfiguration class with Professor McGonagall.  We transformed pills into foam animals, and then transformed ourselves into other characters from Harry Potter in the Transfiguration Booth (aka photo booth).  It was so cool!!

Then we had dinner...we had corned beef sandwiches (Ron hates them, but his mum makes them for him all the time!!), chocolate buttermilk sheet cake, and BUTTERBEER!!!!!  Butterbeer actually tastes really good, and I've had the real thing at Universal Orlando Resort - Islands of Adventure - the Wizarding World of Harry Potter!

FINALLY we went to Honeydukes...the BEST CANDY STORE IN THE UNIVERSE!!!!!  It was SO AWESOME, the chocolate frogs were delicious, and the Bertie Botts Every Flavor Beans actually tasted like every single flavor of jelly bean!!! One was red hot, and I got it!  Yow!!  I didn't eat too many red ones after that.

After Honeydukes, I opened my completely awesome presents, and then we watched "Harry Potter and the Sorcerer's Stone."  It was awesome, as always.  After it was over, we talked about random things, and cast this partially changed spell on each other (we tried to change each other into bum).  Yeah, we're weird kids.  Finally we all fell asleep...worst part of the party.

In the morning we watched the second Harry Potter movie, ate more candy, ate a breakfast of magic pancakes, and sang karaoke.  

Next year I want to do a Harry Potter/Percy Jackson party.  I don't know how my mom will do that, but I'm sure she can!

my...err...umm...annie's harry potter party

So in 2001, I was working in San Francisco and had a 45 minute BART (subway) ride into work.  I was always looking for things that were easy to read since I had a difficult time concentrating on a jostling subway ride...I blew through some James Patterson paperbacks, and every week I scanned the very intellectual "People" magazine, but I still needed some new things to read.  Finally, I gave in to the hype, and read the first Harry Potter book, Harry Potter and the Sorcerer's Stone.  I was HOOKED!  I finished that book the very day of the movie premiere, on November 16, 2001, and insisted that the hubs take me to see the movie on opening night.  It was so awesome!  That was the day that I decided that our then-nonexistent children would have Harry Potter birthday parties.

Annie was born on December 31, 2003.  It became clear pretty quickly that the kid was bright; she was reading by age two, without really having to be taught.  In short order, she became a voracious reader.  However, when she was 8 years old, and was blowing through books left and right, she absolutely, positively refused to even entertain the thought of reading Harry Potter.  I tried for months.  Suffice it to say that I. Was. CRUSHED!  How could I possibly have my...err...umm, her Harry Potter birthday party if she wouldn't even read the books?  I was desperate!  Finally I tricked her into watching the first movie, and then she was hooked!  She read all seven books in eight days.  Yes, that's right.  Eight days.  All 4,224 pages of the series.  Just incredible.  And with that, a fan was born, and the thoughts of a Harry Potter party were dancing in both of our heads!

So we decided to hold her party a couple of months past her 10th birthday.  I needed the sugar coma that is Christmas to wear off, and then we had to get past the school musical.  It also gave me a little extra time to prepare since the party ended up being a costume party and sleepover.  Then the fun began...

First I came up with an invitation, incorporating a lot of internet research and a little bit of imagination:

I devised a Hogwarts "school schedule" for the party, providing structure and smooth transitions.  While this doesn't allow for much "free time" for the kids, a structured party flows much more smoothly and predictably.  Situations where elementary school children are left to their own devices rapidly tend towards chaos.  That's not always a bad thing, but it makes this control freak mama crazy. So schedules are good for my psyche...or something like that.  The kids, (who crave structure, as we're always told by "the experts"), enjoyed the schedule, and would frequently ask, "What class is next?"  I call that a score for me!

I didn't give Annie a whole lot of details because I wanted her to be (at least a little) surprised.  First there was a Sorting Hat ceremony (complete with House neckties):

House Ties

Sorting Hat, courtesy of my Dad!
Then the magic wands chose their wizards (Annie and I made all of the magic two were alike).  
Sorting Hat & Wand Ceremonies

In order to pull this off, I enlisted the help of family and good friends to play the professors and other characters. We had Professor McGonagall (Transfiguration Professor - class included time in the "Transfiguration Booth" transforming pill shaped objects into animals through the use of a magical liquid), Professor Trelawney (Prophecy Professor - she told the future of each student based on tea leaves), Professor Snape (Potions Professor, who used a wide range of "magical" ingredients) and the voice of the Sorting Hat.

Professor Snape, Potions Professor

Potions Classroom

Professor McGonagall, Transfiguration Professor
Getting into character for the Transfiguration Booth...the Harry Potter lightning bolt.

Transfiguration Booth success!

Professor Trelawney, Divination Professor

Laurie & her Rachel

Another good friend (Rachel) came to care for Laurie during the party.  And my mom was absolutely invaluable. I think that the adults (and one teenager) had just as much fun as the kids. It would not have been nearly as great without everyone helping out!!

We had a Grand Feast that included the ever-famous Butterbeer and a chocolate sheet cake (like the kind that Mrs. Figg made for Harry Potter when the Dursleys would leave him with her).  Laurie even sang "Happy Birthday" to Annie :)

I think that the biggest hit of the party, by far, was being able to visit the legendary Honeydukes, the famous sweet shop in the all-wizarding village of Hogsmeade.  There were all sorts of yummy treats just perfect for wizards:

Bertie Bott’s Every Flavour Beans (Jelly Belly jelly beans)
Chocolate Cockroach Clusters (chocolate covered peanuts)
Ton-Tongue Toffee (salt-water taffy)
Drooble’s Best Blowing Gum (gumballs)
Fizzing Whizzbees (super-sized Sweet-Tarts)
Snitch Truffles (Ferro-Rocher with construction paper wings attached)
Licorice Wands (Twizzlers)
Chocolate Frogs (made with a chocolate mold in the shape of a frog)
Unicorn Pops (the long swirly lollipops)
Peppermint Toads (made with the same chocolate frog mold, but with the addition of crushed candy canes)
Sugar Quills (rock candy on a stick)
Werewolf Fangs (candy corn)
Dragon Eggs (larger "Robin Eggs" that you get at Easter)
Jelly Slugs (both sweet and sour gummy worms)
Dumbledore’s Lemon Drops (self explanatory)
Magic Wands (chocolate covered pretzel rods)

The kids had tiny cauldrons in which to put the Bertie Botts Every Flavour Beans.  They were also given bags to load up with the rest of the treats, which included non-edible items, such as Harry Potter glasses and Potions "books."


Even better with candlelight

We ended the evening with a showing of "Harry Potter and the Sorcerer's Stone," while the girls all hunkered down in their sleeping bags in the family room (imagine eight very chatty, very sugar-highed 9 & 10 year old girls all in the same room...all with Type A personalities...lots of deep breaths were taken).  In the morning, there were "magic" pancakes and bacon (basically pancakes cooked with the bacon inside), and then karaoke.

After years of imagining and planning, the party went smoothly.  It was SO. MUCH. FUN!  I felt like a little kid.  And even though I was exhausted, I was so incredibly sad to see it end.  Annie has proclaimed that she would like to have another Harry Potter party next year, so perhaps we'll do it all over again.

It makes me wistful that I will not be able to give the same party to Laurie, more than likely.  I'm ever-hopeful, but completely realistic about this.  But I did throw a rockin' Abby Cadabby swim party for her...that's definitely more her speed at the moment.

When I do something for my girls, I give it my all, and then some.  I have a tendency to go a bit overboard...all of their birthday parties reflect this.  But this party was my pride and joy.  I was told that I set the bar for all other birthday parties, which made me laugh.  We'll see what I can dream up next time...

Thursday, July 24, 2014

autism advocacy -- what it means to me...

I once read a quote that said "The greatest lesson of the civil rights movement is that the moment you let others speak for you, you lose."  I'm not sure where I read it or who said it, so I cannot give that person the proper credit.  I think that is one of the best quotes about advocacy I've read, though I would modify it to include speaking for your children.   

Each day during the month of April, I updated my Facebook status with factual information or with my own opinions about autism.  I've decided to take some of them and expand them here on my blog.

So....what does Autism Advocacy mean to me? Well...a lot of things. 

It means I will stand up for my daughter and others who are affected by autism. I have no tolerance for those who bully, especially when those who cannot defend themselves are being bullied.

It means that I will raise awareness about the daily challenges and struggles that are faced by myself and others who are raising children with autism. That person on the checkout line who tells me that all my child needs is a good out!

It means that I will fight to have my child included with her typical peers so that she will learn how to socialize. This is how she will learn how to function in society.

It means that I will be a voice for my child when she needs me to do so. I will make sure that the doctor listens to my concerns and my "hunches" since Laurie is unable to speak. 

It means that I will educate myself on the legalities of the special education system so that I can ensure that she is getting the most appropriate education possible.

It means that I will research the best therapies that may be available, and will work toward getting my child those therapies if they are appropriate for her.

It means that I will participate in events that raise awareness for autism...from attending and volunteering to work at a walk to raise funds for research to taking part in special events at Laurie's school (Blowing Bubbles for Autism & the yearly carnival).

As an advocate for both of my children, I am their biggest champion. I will help them to achieve their become the best people that they can be. No one could or would ever advocate for my children better than I do.