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!  

http://autismisourtrip.blogspot.com/2014/08/myerrummannies-harry-potter-party.html

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 wands...no 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."

Honeydukes

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...

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 spanking...watch 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 dreams...to become the best people that they can be. No one could or would ever advocate for my children better than I do.

causes and cures and craziness, oh MY!

When you are thrown into the World of Autism, where do you automatically turn for information?  The internet!  Talk about information overload!  You have to decipher fact from fiction, and everyone and their mother has an opinion about every aspect of autism.  My favorites are the blanket statements regarding so-called "cures" and "causes."

"Autism is caused by vaccines."  Yeah, we didn't have that experience, and I haven't seen the hard science in support of that claim.  However, I'm not going to change what another person truly believes they saw (and who am I to say that they didn't have that experience?), and why should I?  I'm not the foremost expert on the subject of the causes of autism, and neither is anyone else (at this time, anyway).  I do know that I resent the Hollywood stars stepping up to the plate who preach about the horrors of vaccinations (particularly one individual...).  It's ridiculous to me that mainstream America will just fall at the feet of someone just because they are famous...and that goes for in and out of the autism world.  When you are famous, you are automatically a role model, whether you like it or not.  Be careful what you preach...

"Autism can be cured with chelation therapy."  Chelation is the removal of heavy metals from one's blood, and is known to be quite dangerous...even fatal.  Ummm...no thank you.  I want my child here with me, thank you very much!

"Autism can be cured by switching over to a gluten-free/casein-free diet."   Nope.  Don't buy that one either.  Laurie has Celiac Disease.  Converting to a gluten-free diet did not jolt her into non-special needs status.  It didn't really do a whole lot except increase our food bill and cause our already picky child to become even pickier...

"Hyperbaric Oxygen Therapy will greatly reduce the severity of behaviors for an autistic individual."  Therapy utilizing a hyperbaric oxygen chamber involves breathing oxygen in a pressurized chamber and has been cleared by FDA for certain medical uses, such as treating decompression sickness suffered by divers. Some people claim that their autistic children have slept better after a treatment or have been able to focus more clearly.  I am in the camp of "people will see what they want to believe."  This type of therapy has not been cleared for autism, though there are many people who have personally purchased a chamber for their home use.  I can't find a lot of factual information about hyperbaric oxygen therapy as it pertains to autism, though there are many opinions!  To me, though, it just seems like a waste of a lot of money since I can't seem to find any hard facts about the benefits.

There are so many more so-called cures and therapies circulating around on the internet.  Not to be jaded...there are many people out there who are out to make a quick buck on the parents of autistic individuals, and they don't care who they hurt in the process. And those parents are so desperate for an answer or a cure that they just hand over their money...  It breaks my heart...

I believe that the best thing that one can do is to find a pediatrician that one truly trusts, and to talk about all of the various treatments available.  A medical doctor is much more qualified to help you sift through the fact and fiction in the world of autism...much more so than a movie star who does not much more than read lines aloud to a camera.  A medical doctor can guide you as to treatments and evaluations.

Basically I think that you have to research everything that you can about autism, and then make the best educated decision that you can.  It's not easy.  Undoubtedly you will have people judging you and offering their 6,000 unsolicited opinions.  But in the end, you have to decide what will make your child the best person he/she can be, and what kind of judgment calls you can make to help him/her along their journey through life.

River Rat

Laurie has a community worker who takes her to the Boys' and Girls' Club and to the park.  Laurie is typically content to just play on the playground at the local parks.  Then one day she decided that she wanted to take a walk.  They walked all around, and then they started skirting the river from up high.  Her community worker did not know that there were trails down to the river (she only knew of the boat launch).  Well...Laurie found a path...

So I get this call from Laurie's community worker who has taken Laurie on an outing.  I could hear the panic in her voice even before she said to me, "Laurie has kicked off her socks and shoes, and is trying to go into the river.  I can't hold her back much longer."  Ready.  Set.  Adrenaline rush!

I barked at Annie to go and get the hubs, and then we took off.  We arrived at this park that runs along the Susquehanna River.  It's beautiful...normally.  On that day though, it was an ugly beast trying to take my baby.

We drove all over the park, and could not find them.  We parked near the boat launch, and got out of the car to try to find them that way.  While I walked along the top of the bank, the hubs and Annie hiked along the bank until the hubs sank in mud, so they came up and walked along the grass lining the riverbank, trying to see Laurie and her community worker.

Then a really panicked call came, because Laurie had gotten into the river and her worker had gotten stuck in the mud going in after her, and could no longer reach her.  Annie kept saying over and over, "Aren't you glad she learned how to swim last summer?"  Yes, Annie.  Yes.

Finally, the hubs spotted them about third of a mile from the boat launch.  Laurie was chest-deep in the river, but wasn't really going anywhere.  The hubs ended up going into the water to get her, and was able to push Laurie out to where Annie and Laurie's community worker were waiting to catch her.  However, he then became stuck himself, but managed to pry himself out after a bit.  While I ran (yes, RAN) to get the car, they managed to get Laurie up to the top of the bank.  Both she and the hubs were a complete mess, covered with mud from head to toe.  Her worker was muddy as well, and Annie was a little affected.  Other than the mud, Laurie was no worse for wear.  While I managed to remain calm at the time, I still have nightmares.

Looking back, the only thing we did "wrong" was not call 911.  I was going to do so, but the hubs had my phone because he was trying to keep her community worker talking while he looked for the two of them.  911 is on my speed dial now...

So this is one of those situations I've always dreaded.  The one where Laurie has decided to explore the world on her own, without regard to her own safety and well-being.  The one where the exploration leads to the river, and she decides that it's a great day for a swim in that icky, murky water.  The one where I'm nowhere near her to prevent such things from happening.  It is precisely this potential life threatening situation, which became stark reality, that makes me the über-control freak that I am.

I have always looked at the big picture before we have gone ANYWHERE.  When I do so, I begin to think in flowcharts (If we go HERE, then THIS might happen.  If THIS happens, then THAT will have to happen. And so on...), and in terms of the minutiae of the minor details that go along with anything we do with Laurie.  It is the reason that I don't relax, that my mind is constantly racing.  It is the reason that I have a hard time with simply "going with the flow" (I tend to overthink everything).  It is the reason I'm not as spontaneous as I would like to be.  It is also the reason that both girls are usually safe and happy, and that is far more important to me than anything else.

all by myself...

So my baby cousin got married in August.  The wedding was in Redondo Beach, California, and I attended.  By myself.  No hubs.  NO KIDS!!  So weird.

I agonized about the decision to go.  You have no idea of the guilt I felt even just considering it, much less actually attending.  The hubs kept telling me that it was important that I attend (no

Kevin and me

dispute there).  I had my parents telling me that I needed a break.  None of them were wrong.  But there were financial considerations, as well as the huge "kid" factor.  But we had airline miles that I could use, and my parents were treating me to my hotel room, so I finally decided to just go for it.  I was glad that I did, because my cousin asked me to be a reader.  What an honor!

Dad & me

So I drove down to Virginia and flew out to LA with my parents.  I took with me one carry-on suitcase and my big purse.  There were no bags filled with electronic devices, toys, books, snacks, drinks (ok, maybe there were snacks...I wasn't about to pay the airline $50 for some stale chips).  No DVD players.  No car seats or strollers.  I barely knew what to do with myself.  I intended to bring my Jodi Picoult book that was about an autistic child, but my mom said I was have as little to do with autism as I could for a just few days.  I understood, but I really wanted to read it (I have probably read 5 books for fun since Laurie's diagnosis)!!

I spent the first couple of days "on alert," ready to spring into a sprint to prevent Laurie from running away, from eating gluten-filled food, or from climbing something.  I would look for her diaper bag before going somewhere.  But after about two days of being there, I relaxed a little.  I managed to nap.  I spent an afternoon in my hotel room and it was silent!  I ironed my clothes and dressed up!  And I even...wait for it...read a book FOR FUN!!!

The best part?  I had entire uninterrupted conversations!  Of course they were all about the fam,

The happy couple!

but that was OK.  I finished sentences without someone pulling on me...without Annie talking over me...without having to repeat myself sixteen times before someone actually listened to me.  I managed to eat entire meals without having to jump up to get something, cut someone's food, or clean up a yogurty mess.  I didn't raise my voice even once.  I could go to the bathroom without making sure that someone was keeping an eye on Laurie.

Of course I missed the girls and the hubs like crazy.  But I had such a blast seeing the sights, catching up with my family, being on an adult schedule, and simply sleeping without being on alert.  It was really nice to let my inner super control freak have a couple of days off!

Oh, I really did feel a little guilty when I would get texts and calls from the hubs telling me how much of a whirling dervish Laurie was each day.  It just didn't seem fair that he was dealing with all of that on his own.  But I would do my best to go along on my merry little way and have fun anyway.

Uncle John & me

Because I was with my parents, and not with my kids, there were many times when I felt like I was 7 again since I seemingly had no responsibilities.  At one point my dad even did "the whistle" to get my attention so that I would get on the correct wedding bus...that "whistle" that could be heard throughout the neighborhood when I was a kid...that "whistle" that made you sprint like the wind to get home...that "whistle" that had the other kids telling you that you'd better get home.  I really did feel like I was transported back to my seven year old self.  Then my dad or my uncle (that's him in the pic with me) would get me "adult beverages," and that feeling would fade. (Note: somehow having the men who served you chocolate milk as a kid get you adult beverages seemed just wrong on a certain level.  I managed to get over it.)

After the wedding, we flew back to DC, and I drove back home the next day.  When I walked in the door, I was greeted by everyone (well, except for Laurie, who was watching a show).  The hubs soon left to go teach, and my life of chaos resumed.  It would have been as if I had not ever left...but I was not quite as control-freaky for a few hours or so afterward (too bad the hubs missed THAT!)...

I do think it helped for me to get away, and for me to be taken care of for awhile.  I don't think I can take the guilt of it if I do it very often, but once in awhile, it's a good thing...

Vacations...

So this summer we spent 5 days in Kill Devil Hills, North Carolina.  It's gorgeous there.  And if you like the beach, it's probably somewhat of a paradise, especially the house in which we stayed.  Personally, I'm not a beach person...never have been, never will be.  But spending time with John's extended family is fun.  And the girls have an absolute blast at the beach, at the pool, and with the family as well.

Annie loves it there.  She gets to play with cousin Shane, cousin Baby Kate, and everyone else in the house (this year there were 27 McNultys present!).

  

One of her favorite things to do there is to have jellyfish fights with the guys.  Apparently that's just fun.  I think it's a little gross.

She also likes to hang out with Aunt Jill and Uncle Demitri.

  

In the past, Laurie loved the beach.  But when we went two years ago, she seemed to dislike it and spent her time in the pool instead.  So this time around was a bit of a mystery as to what she would like.

Well, this year she had a circuit.  She would wake up before everyone.  I would get up and throw the iPod into her tent so that I could catch another 10 minutes of just not running, then shower, and then get Laurie up and dress her while John got ready.  Then we'd go up to the third level and have breakfast, and try to keep her entertained for awhile before we went to the beach.  Finally, it was beach time.  Everyone suited up, sunscreened up, and headed down to the beach (Laurie in a life jacket, of course).  Laurie would go dance in the waves, then without warning turn either north or south and run away as fast as she could.  (Usually) John was the chaser; he would run her down, get past her, and turn and block her path like a basketball player on defense.  Then Laurie would simply stop, dance in the waves some more, and then dash away in the opposite direction, while John followed and blocked her path the other way.  John's quads were sore for two weeks after the "vacation".

So we'd run up and down the beach a zillion times, and then Laurie would just turn on a dime and head back toward the house.  We'd hose her down to get the sand off, and then she'd jump into the pool, where she would stay for a couple of hours.  Then she'd be over that, and would strip naked, admire herself in the reflection on the sliding glass door (she's a bit of a narcissist), and then into the house where she'd get dressed, have lunch and chill out by watching videos on both her iPad and the DVD player.  And then we'd repeat the cycle until it was time for dinner, and subsequently bed.

The hubs and I had a divide and conquer thing going on.  Though I would chase for a little while here and there, he would do most of the major running.  She had extended family chasing after her too.  I would handle things like meal preparation, laundry and the like.  I must have walked up and down two flights of stairs at least 30-40 times each day. Why am I not any thinner??  It's the million dollar question.

But Laurie did love it.  She sort of interacted with people.  She made good eye contact, and would say hi if prompted.

 

 Most of all, though, she loved the sensory stimulation that the beach and the pool provided.  BONUS:  She even slept fairly well!

During this trip, Laurie managed to escape a few times.  One time was from the third floor of the house...she slipped out the sliding glass door onto the deck, and made a break for the ocean.  Lucky for us, when she got to the bottom floor, several people were there, so they stopped her from continuing on.  Boy, was she MAD!  Another time the lock on the bed tent wasn't securely fastened, so she managed to get out.  Imagine her in her stripey pajamas with her gleeful grin, racing to the top floor of the house.  She looked like an escaped convict!  Laurie is so quiet...so stealthy...so sneaky...it's SO SCARY!!  Our nerves were SHOT!  We ended up leaving the next day (that was the tentative plan anyway, but the escaping solidified it).

So on our way back, we decided to take a detour through Winchester, where my parents live.  We stopped in for dinner, and to let the girls run around a bit.  Laurie remembered where everything was.  She made a bee-line for my dad's office, where his computer is.  She played the piano.  And she jumped on their bed. She also made herself at home and jumped into the bathtub.

Just before we were leaving, I found her sitting at the kitchen table admiring a beautiful fruit platter my mom had arranged.  This thing was really a work of art!  My mom took a banana off of the arrangement and tried to hand it to Laurie, who gave her a dirty look and put the banana back.  Next, my brother tried to give her grapes.  Same thing...dirty looks, and an attempt to restore the arrangement to it's proper order.  Poor Laurie was torn...she really wanted to eat some of that fruit...we knew this because she said the name of each kind of fruit...but that would mess up the way it was supposed to be.  What's a girl with perseveration problems to do?  Well, you pile back into the car, and the Grandma gives the fruit to Mommy for the way home.  No harm, no foul.

Vacations with kids are always a little trying because kids thrive on routine, and vacations by their very nature are an interruption in routine. Kids with autism rely on routine more than most, so deviation is especially daunting.  But for that reason, when they can experience the kind of joy and bliss Laurie did from an exciting new experience, it is all the more rewarding.  We are definitely looking forward (admittedly with some dread, but with a lot of excitement) to our next vacationing adventure with the girls!