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!

"Enfant Terrible"

So it's no secret that kids on the spectrum tend to have far more tantrums and meltdowns than the average person.  These can range from fairly mild to really loud, and sometimes even violent.  In my experience, it's almost always due to frustration because of an inability to be understood, hearing the word "NO," or a change in the routine or expectations.

It wasn't so bad when she was still little.  Every single kid melts down, especially at the completely packed grocery store where people are doing their holiday shopping...because that is nice and embarrassing, right?  People understand when they're little.  It's when they get bigger that they "should know better."  

Laurie used to be pretty mild-mannered.  She was a mellow baby, and was pretty much content to go with the flow.  See how cute?

As autism firmly took hold of our sweet little girl, the tantrums and the meltdowns came along gradually.  At first, Laurie was easy to redirect, and until recently, a tantrum or a meltdown would really only last for 30 seconds, tops.  We often would do things that would circumvent the triggers, like allow her to watch whatever she wanted to on TV, or give her any snack that she wanted as long as she "requested" it either verbally, on the iPad or through the use of pictures.  It was supposed to be "rewarding" her for reaching her goals of effectively communicating, or in the case of allowing her to watch TV, give us a short period of time to do things like go to the bathroom, cook dinner or merely collapse.

One particular quirky trigger is that, when we're driving somewhere, Laurie hates, Hates, HATES U-turns.  She'll start shrieking and kicking the driver's seat every time.  We often drive around the block rather than suffer her wrath.  And if we're trying to avoid her seeing Chuck E. Cheese, we'll often just take the highway so we don't go anywhere near the place.

As time went on, Laurie became more demanding as she became more verbal.  I suppose some of it is just a natural progression of things...you could see glimpses of a "normal" kid who was testing boundaries.  But, as you can imagine, Laurie slowly became a bit of a tyrant, and now we're really struggling with this on occasion.  The TV is always on, and very rarely on a show that any of the rest of us would like to watch, even if Laurie is in the other room.  She constantly yanks on us to twirl her around in the swing, to get her snacks and drinks, to take her to Chuck E Cheese.

She is on a medication to help with some OCD (Obsessive-Compulsive Disorder) tendencies, as well as her tantrums, and that medication makes you really hungry.  Laurie wants to eat constantly....GF pretzels, GF waffles, GF cookies, bananas, chips, Cheetos, chocolate....she is constantly asking for these items.  Over the summer her want for these items reached a fevered pitch.  We have scaled back how much she can have in a day (really, how many Cheetos does one really NEED in one day?), but along with that, her tantrums have escalated to a surreal level.  With every "No," she drops to the ground screaming like she's being tortured.  If we tell her, "No, you can't wear your princess dress to school," we get a lot of yelling and sometimes even some hitting.

So now we're changing our approach and the way we react to things, and the kid gloves have been taken OFF!  It is evident to everyone who knows her that the kid is smart.  I personally believe that she's been using the "autism card" to her advantage ("Oh, look at me!  I'm cute and autistic...and did I mention cute?!?!  Those fools think I don't understand anything, so I get to do whatever the heck I want!"). Well, little girl, not anymore.

While I understand that she does have some behaviors that she just can't get past (thank you, OCD), some of those are actually learned behaviors, and we have been working with her to "unlearn" them.  This means that there is no room to be wishy-washy.  You have to mean what you say, and you have to enforce it Every. Single. Time.  If you have changed something, such as shutting off the WiFi to her iPad (because of her perseveration on it), and you've weathered the tantrumming storm that had ultimately ensued, you cannot simply turn it on again. Because when you go to shut it off once more, those tantrums will be unlike no other you have ever seen.

To get a handle on some of the behaviors, I have found that if I have a stern voice and tell her how it is without wavering, then I have better results.  ("NO, you are NOT going to eat a banana right now because it is time for dinner.  Get off the floor and go sit in your chair RIGHT NOW." or "NO, it is NOT ok to hit if I don't put the movie in that you want.  You will NOT get to watch your show now.")  Unfortunately, by the time I can be heard over the tantrum, I am yelling, but sometimes that is just the way it has to be.

Sometimes speaking in that manner...without the pleases and the thank yous...really is effective.  I hate it, though.  I sound like such a mean person...but sometimes enough is enough.

I'm confident that the tantrums will become fewer and less fevered...especially as Laurie grows and becomes better able to communicate.  Until then, we will simply continue to try to find the best strategies to get through the tantrums and to help her (and us) cope.  Some days it's just second by second...

Sick days

If you have had young kids in your life, you might remember when they would become sick or get hurt, or perhaps you're living through it now.  I found that it was especially difficult when the girls were babies.  It was always a mystery trying to figure out what in the heck was wrong with them since they couldn't speak.

One of the "best" sick days was the day when Annie could tell us what was wrong.  It took a bit to get it out of her...she had an unexplained fever and vomiting, so we asked obvious questions such as, "Does your tummy or head hurt?"  We thought she just had a stomach bug, so we were fairly content to let it run it's course.  Then I talked to my mother-in-law, who had the foresight to ask, "Does Annie's throat hurt?"  Now that wasn't even a blip on my radar.  Never having had strep as an adult, I just didn't know the symptoms of strep.  So when I asked Annie, and she answered "Yes!," we packed her up into the car, took her to the doctor, and picked up a handy-dandy antibiotic prescription.

Then you have Laurie who is almost 7.  She was born with congenital heart block (diagnosed at 21 weeks in utero), and was supposed to have a pacemaker put in immediately upon birth.  She defied all of that.  Her heart was and is very strong...it just beats slowly (alarmingly so).  We have been told that she'll need a pacemaker "one day," but she was good to go without it for a long while.  We're just supposed to look out for the signs that her heart is having trouble - excessive sweating, unable to run due to shortness of breath, fainting.  So far, so good though!  She certainly doesn't present as a kid who has heart troubles...ask anyone who has seen her in action!

But since she is nonverbal, she still can't tell us when something is wrong.  Somehow I have a much harder time with this now than when she was a baby.  Because she isn't that fussy when she's sick or hurt, we only have a clue when she loses her voice, gets the sniffles, refuses food, has a fever, or somehow inadvertently shows us that she has been injured somehow.  You know...by bleeding all over the place because she ripped a toenail. She doesn't cry.  She certainly doesn't tell or show us.  She is just pretty stoic.  When she's out of sorts, we practically beg her to tell us where it hurts.  I've pointed to her body parts (or Annie's or even my own), used the iPad, and even tried to get her to show me by pointing to a doll.  She has no interest in any of that.

Once she fell off of a ride at Chuck E Cheese and broke her foot.  We had no idea because she only walked around with a slight limp.  It wasn't until she jumped around in a bounce house, and landed a little funny, that we realized she had done more damage than we had thought.  So we took her to the ER, and she came home with a day-glo pink cast that she had to wear for a few weeks.  It really didn't faze her one bit.  She walked around as if she didn't have a care in the world, much less a broken foot.

If she's uncomfortable, or isn't happy about something (like being changed), she will often break into song. Her recent "go-to" song is "Jingle Bells," but we've also heard renditions of the ABC song and "Itsy Bitsy Spider."  We heard all three of those when we had to take her to the ER for severe constipation earlier this year.  It was so sad.

When Laurie is sick, Annie rises to the occasion.  She gets her stuffed animals, drinks, and will just sit with her for hours.  She's so good with Laurie.

But really, our biggest clue that Laurie does not feel well is that she is still.  And she's quiet.  It doesn't happen frequently, thank goodness, so when it does, we're always alarmed.  But we do get a lot of great cuddling in, even if we do start sweating from the little heating pad.  Truthfully though, as horrible as it is when she doesn't feel well, sometimes we're relieved to have the break.  I think it just gives everyone a chance to regroup.  Inevitably she bounces back, and she's back to her usual havoc-wreaking self.  And despite the havoc, we're always happy for that.

Cacophony!!

So Laurie loves to watch TV shows and movies.  Often she has the TV playing a kids' show while she has the iPad running a YouTube video of Teletubbies or some other nauseating show...both at full volume, and often when she has her other techie toys going (like the Leapster or LeapPad).  Don't even think about turning the channel to something you want to watch.  Not even for a second.  Laurie will march right over to you with the remote control, place your fingers in approximately the correct areas on the remote, and then bark an order at you.  Try to ignore her if you can.  It's endearing (read: scary), really.  If you give in and change the channel, she'll then rip the remote out of your hand and run across the room with it so you can't change it back.  Sometimes I hide the remote (shhhh....). 

Laurie goes in phases where she wants to watch the same thing over and over.  And over.  Currently we are in a "Cabbage Patch Kids" show phase - particularly the "Vernon's Christmas" episode.  It's cute and has catchy music.  I find myself singing the songs at odd times...hopefully no one else has heard me!  I do sing them with Laurie around, sometimes, and if she's in the right mood, she'll join in, which just makes my whole day.  Most of the time she just looks at me as if I fell off my rocker.

  

Other times when she's in perseveration mode, she'll try out various inflections with you.  During a strong Strawberry Shortcake phase (called "Shortcake" by Laurie), she would come up to one of us, grab us by the hand, and drag us into the den where'd she look up at us and say:

"Shortcake?" (cute, right?)

"ShortCAKE?" (because maybe the cute wasn't ramped up enough)

"SHORTcake." (obviously you aren't getting it)

"Short. Cake."  (as if you really are the most clueless person she's ever met)

Eventually you give in because you just want a little peace and quiet (that's cleverly disguised as white noise).

Along with her strong desire to watch as much musical TV as humanly possible on as many devices as she can get her hands on, Laurie has been trying to figure out how the remote works on her own.  It's the only way she's going to learn, because you know that I'm certainly NOT going to teach her!  One day she somehow initiated a subscription to the Mandarin Channel.  I didn't know it until we got our bill.  Thankfully, Time-Warner Cable removed that from our invoice.  I guess with an Irish last name, they figured that the likelihood of us watching that channel was pretty slim.  They then told me that you can set the cable box so that nothing can be ordered without calling them first.  Thanks, TWC.  Information I could have used earlier!  Of course, now if we try to order a movie, their system is always "temporarily down."  That's ok, though.  I'm certain I would fall asleep during the movie anyway...

Recently Laurie was playing around on the iPad, and was watching a clip of a Barbie movie on YouTube. Earlier, the hubs had signed in to my Gmail account which somehow linked to YouTube.  Well, Laurie "liked" that Barbie movie clip, and now the whole Facebook world apparently knows that I "like" it too.  Yay, Facebook!!  (It seems like it's a little bit "Big Brother," if you ask me).  

She's also figured out how to maneuver the Wii.  This is both a good thing and a bad thing.  It's good because I'm not plagued with orders to start up a new song on "Just Dance Kids," or to replay the same one over, and over (or heaven forbid...have Laurie freak out on me because I just can't figure out WHICH song it is that she wants!).  It is bad because she can pretty much do it herself, and thus spends an inordinate amount of time just making each song pause and restart.  It makes me CRAZY.  

You know, when I was a young kid, we had a cabinet-style TV that sat on the floor.  We didn't have video games, a computer, or even more than 4 channels on the TV (cable TV wasn't even available in my parents' neighborhood until I was in college).  I have a hard time imagining what my life with Laurie would have been like if this were the 1970s & 1980s (never mind any earlier decades).  I know that I take for granted that Laurie has these things to entertain her and to help her communicate.  But I'll never be ungrateful for them.

Being a Sister is Hard...

...especially when your sibling is autistic!  My sister Laurie is my favorite kid in the world, but she’s also kind of annoying at times.  I mean, she escapes, and I have to drop everything and catch her whether or not it breaks my iPod.  When she climbs on top of the TV, I have to get her down.  It is seriously hard being the sister of an autistic kid.

I’m Annie, Laurie’s older sister.  Sometimes I wish she wasn’t autistic, it’s so hard being her sibling.  If she wasn't autistic, then she wouldn’t follow my friend Lilly when it was time to go in from recess, and that would mean I wouldn’t have to carry her back to her instructor!

But she’s fun, too.  She’ll play with me (mostly cup stacking and tower building), and she’ll dance with me (holding hands and spinning).  Sometimes we play drums together (she got a drum for her birthday. Figures, she likes noise).  Either way, we have fun doing it!

Also, we never fight.  It’s awesome.  Every other kid who has one sibling or more fights.  So, it’s another one of the good things about having an autistic sister.

We don't always get along, but we’re good enough for me to know that I love being Laurie’s sister!

"A" is for "Annie," who is Almost Always Awesome!!!

I'm sure you've figured out by now, Laurie has an amazing big sister...Annie!  I think that Annie is Laurie's biggest champion.  She is just always helping out with Laurie, and usually doesn't complain a whole lot about that.  Annie gets Laurie snacks and drinks, helps to change her, tries to convince her to try new foods, plays the Wii with her, builds towers and counts blocks with her, and teaches her very important life skills, such as the fine art of cup stacking.  She's just awesome!

I knew she was going to be a fabulous big sister for Laurie when, shortly after the diagnosis, I walked into our living room to see her sitting on the floor with Laurie (Laurie was 2, Annie was 5).  She sprang up from her seat with arms wide open, and so very happily and innocently yelled, "Laurie has autism and I......DON'T!"  To her, that was a celebration of their differences.

Annie really tries to get Laurie to interact with her.  Most of the time she is successful, though it's not in the typical way.  They don't play typical games together, because Laurie doesn't understand turn-taking. They can't really play the Wii together, because Laurie doesn't understand how to play those games (though she can mimic the movements on Just Dance Kids for Wii).  Annie doesn't even read stories to Laurie, because Laurie won't sit still for very long so you can read to her.  But Annie really tries...she stacks blocks and works on counting & ABCs with Laurie.  She pushes Laurie when she's on the swing and works on getting her to request to be pushed (Ready....Set...GO!!!).  And she tries to get Laurie to look at the camera (read: bodily forces her to look toward the camera) when I want to get a photo of them together (inevitably it looks like Laurie is a hostage victim, but hey, Annie works hard for those photos!).

Annie is a great artist, and a compassionate soul.  When she's bored, she draws things like this:

In school, she journals about her time at the farm:

And she helps out around the barn...actually volunteers to muck the stalls!

Annie is Laurie's biggest cheerleader...she goes to the pool when Laurie has lessons, and takes photos of her (she's a pretty good photographer!).

When she's not cheering on Laurie, we can be found cheering on Annie!  Last year at the 5K & Walk for Alive! with Autism, she ran in her first 5K.

Throughout the school year, she cheers and plays basketball & softball.

   

Annie participates in the school's annual musical and is an active Brownie (soon to be Junior!) Girl Scout.

Laurie loves to watch Annie participate in her various activities, whether Laurie is present at the "live" versions of them, or is just watching them later on video.  She gets so excited to see her big sister in action.

Sounds all sweetness and light, doesn't it?  Well, Annie does get frustrated with Laurie at times, and I'm sure that Laurie gets frustrated with Annie as well.  However, they don't fight.  They don't bicker (kind of impossible when one kid can't really talk). They just have seem to have some sort of understanding that I don't really get.  Another perk of the autism, I suppose.

Annie sounds like a kid who is just too good to be true.  Well, she's just like any kid who whines and gets upset when she doesn't get her own way.  She has her own struggles, just like any kid.  There are days when she makes me want to pull my hair out.  She is not perfect by any stretch of the imagination, but she is definitely the perfect big sister for Laurie.