Friday, November 8, 2013

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...

Wednesday, November 6, 2013

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!

Thursday, September 19, 2013

"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...





Monday, August 19, 2013

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.


Wednesday, August 14, 2013

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.


Tuesday, July 23, 2013

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!


Sunday, July 21, 2013

"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.

Saturday, July 20, 2013

Are we in Holland or Beirut?

So if you live in the world of Special Needs, you have undoubtedly come across this essay:


WELCOME TO HOLLAND

by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.


After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."


"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."


But there's been a change in the flight plan. They've landed in Holland and there you must stay.


The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.


So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.


It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.


But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.



But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



It's a lovely essay, but it seemed so...sunshine & butterflies.  I don't know about other people, but sometimes I just wanted to rip up those tulips and stomp them into the ground.  It didn't really reflect the hell you go through as you fight your way through the onslaught of information and you navigate your way through the various systems.  Then I came across this gem, which I believe is more far accurate (minus the bag over my head!)...


WELCOME TO BEIRUT by Susan F. Rzucidlo


(Beginner's Guide to Autism)

"I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It's like this.."

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "
YOUR CHILD HAS AUTISM"!

There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired". Bullets whiz by "refrigerator mother," "A good smack is all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery."  You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You've done everything right in your life, well you tried, well, you weren't caught too often. Hey! you've never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She'll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out (early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed.

There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop an odd sense of humor. Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You're excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen. You're exhausted because your child doesn't sleep.

And yet, hope springs eternal.

Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they'll understand, they are living through similar times. For those people you will be forever grateful. Don't get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place.

But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Lifelong friendships are forged. You share an odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better.  Life is good but your life is never normal again, but hey, what fun is normal. 
  
Now, that's more like it!  It's not all sunshine & butterflies...far from it.  But it has been an interesting time, and it definitely hasn't been all bad.  It's been a readjustment of our hopes, dreams and outlook.

Autism really does change the way you see things.  While you are always on the go (often at a frenetic pace), at the same time, you are forced to slow down while your kid obsesses over something (Do you know just how cool a dandelion puff really is?  Let's twirl it around carefully, then blow or pick the puff pieces off, watch them fly, then run like heck to the next puff, and repeat until they've all been obliterated!), so you may as well learn how to appreciate those things.



How you act, how you feel, even your entire attitude, can change.  It makes you grateful for the little things.  It can bring out the fiercest mama bear you've ever seen.  You suddenly have a level of patience you never knew you had, and at the same time, you become incredibly impatient with things that happen in the "typical" world.    

The coolest thing to me has been when a seemingly jerky person will suddenly change entire demeanor when you tell him/her that your child is autistic.  Usually he/she says something like "My son/daughter/niece/nephew/friend's child has autism too.  I wonder why so many children are being diagnosed with it nowadays." With that, a conversation is started, and you have made a new friend.  And that's almost always a good thing...






Thursday, July 18, 2013

Hippotherapy...

Our introduction to hippotherapy was (and is) a detour in our autism trip.  Detours are almost always a pain in the neck.  Often, you don't know how you are going to be rerouted...if you will be at a standstill...  In this case, however, a detour into the unknown was a good thing...

You may be wondering what hippotherapy is.  So glad you asked!

"Hippotherapy, from the word “hippos”, the Greek word for horse, was created by the Germans who use all kinds of compound words in their language. Hippotherapy is a very logical word for them to create. It means “treatment with the help of the horse.” Physical therapists there get trained and certified and can say they are “hippotherapists”, physical therapists that treat with the horse, in the same manner as they have “hippologists”, people who train horses. As Americans, we have chosen to retain the use of the word, “hippotherapy”, thinking that it would be internationally easier to communicate with other professional colleagues around the world. Presently, over 24 countries are doing some type of medical treatment with the use of the horse and most are calling it hippotherapy."  (American Hippotherapy Association:  http://www.americanhippotherapyassociation.org/)

To sum it up, you take your autistic child and wrestle a helmet onto her head.  Then you put her onto the biggest horse you've ever seen, and allow her to ride off into the sunset without you...

I learned about hippotherapy and therapeutic horseback riding in my extensive Google-ing.  When I asked Laurie's Early Intervention Service Coordinator about it, she immediately put in a request for an evaluation so that Laurie could try this out.  We knew it wouldn't be a cure, and were even a little skeptical as to what it would do for her.  But what I did know is that provides an enormous amount of sensory input, and a session of horseback riding would be like an additional session of Occupational Therapy.

So Laurie began hippotherapy in the summer of 2009.  She was 2 1/2.  I have a very healthy respect for horses (read: they scare me).  But I sucked it up, and put our little baby on top of that great big horse and let her go.  Here is a photo of her first session (sorry it's so tiny - I had to stay far away from her so she wouldn't see me the entire time):






Laurie wasn't crazy about it.  She fussed, and it took both sidewalkers (people who walk on either side of the horse to provide stability for the rider) to keep her steady, because she was constantly trying to get down.  She made it through most of a 30 minute session.

Fast forward to the present, July of 2013.  Laurie LOVES it now.  She still has two sidewalkers, but doesn't always need to be steadied.  She even talks to her horse, Floozie, sometimes (Ready...set...GO!!).  She copies the motions or the sounds of the other animals on the farm.  She sings songs, she counts, she says her ABCs.  She verbalizes and uses her iPad to communicate what she wants to do while riding the horse.  She is just ALL that and a bag of chips up there.




Because of the kind-hearted generosity of the volunteers who give their time to walk with these amazing kids, the cost to ride is kept to a minimum.  Hippotherapy and therapeutic riding are not approved evidence-based therapies for autism or other disorders; hence, insurance will not cover it. Somehow, though, Early Intervention picked up the cost for it before she turned three, and then our school district footed the bill while Laurie was in preschool.

Now that Laurie is in grade school, we are fortunate enough to have those costs further covered by an organization called Southern Tier Alternative Therapies, Inc., (STAT). (http://www.statinc.org/) This is an organization that raises funds for children to participate in therapies (primarily horseback riding at this time) that aren't covered by insurance.  It is pretty amazing that such an organization exists to help pick up what insurance doesn't cover...

Since the summer of 2012, Laurie has participated in a pilot program called STRIDES, which is studies how to increase a child's communication with the iPad while in a highly motivating setting - on horseback!  STRIDES is comprised of members from STAT, Fargnoli Farms, and Ithaca College, and is directed by Laurie's former Speech Language Pathologist, Tina Caswell.  The progress Laurie has made since she began riding in 2009 is just simply amazing, but since STRIDES,  it's like she's been shot out of a cannon.  It's just so cool.

Going to the farm is kind of therapeutic for everyone in our family.  First and foremost, it's a real boost to the ol' parental ego to see Laurie flourish while on horseback.  It's also helpful to talk with other parents...to know what they are going through...to know that you are not alone.  And Laurie has cheerleaders...from the volunteers who walk with her to other parents and kids at the barn.  Everyone is supportive of each other...they get that everyone there is fighting similar battles.

As for Annie...well, she loves going there and hanging out.  She is put to work by Linda, the farm's owner and the director of the program there.  Every chore seems to have a lesson behind it.  Annie helps out with the horses by feeding them, brushing them, mucking stalls, all voluntarily.  Occasionally she looks for Guinea hen eggs (and sometimes gets chased away by the protective mama hen). And she always feeds the goats while she's there. Sometimes Linda has Annie move rocks and 50 pound bags of feed.  And to my knowledge, Annie doesn't complain about any of it.  She is a real cowgirl! So, every once in a while, she gets to ride a horse for a couple of minutes.

There is just something about the horses and the farm that brings out the best in both of my kids.  So, you see, sometimes detours are a good thing!








Tuesday, July 16, 2013

Diva much?

So, over the past two years, Laurie has gone from not really caring about what she wears, to being quite particular.  The first clue that she had a strong opinion of what she wore came when she only wanted to wear gymnastics leotards.  Thank goodness Annie had a few to pass down.  I think she liked the snugness of them...they provided some sensory input that she was seeking.

Then she was able to let us know (through minor tantrums and stripping) that she no longer preferred denim, and only wanted to wear pants made of stretchy material (sweatpants/shorts & leggings).  Not such a big deal, right?  It's ok that we had to go out and get new clothes, right?  Pay no mind to the box of Annie's hand-me-down jeans and the ones I purchased ahead of time on a great sale.

Currently we are onto the whole "I want to wear dresses!" phase of things.  They can't be just any dress either.  They either have to be pink and sparkly, like this (that's Annie at the Father-Daughter ball):



Or a dressy sundress (Laurie wore this to a birthday tea party she had been invited to):



She likes to wear these dresses everywhere she goes.  Don't you wear your princess-best to Lowe's?


She wore that pink and green dress to school one day.  Her teacher called me to let me know that, "there may have been a photo shoot."  (Side note: her teacher is awesome.)

As a child, I was not particularly a girly girl, and neither was Annie (though she did go through a short, but fierce, Disney Princess phase), so this is kind of new for me.  And because of this, Annie only had two or three dresses to pass on to Laurie...my mom made a couple of cute dresses as well.  I'm hoping that one day she'll allow us to brush her hair without the use of brute force (John holds her down and Annie holds her hands while I brush her hair...it's the traumatizing game the whole family can play)...it would add so much to her ensemble!

The interesting thing about Laurie is that if she dribbles strawberry or watermelon juice on her clothes, she'll continue to wear them.  But don't even THINK about letting one single drop of water spill on her clothing.  If that happens, it will take her approximately 1.5 seconds until she's stripped down to nothing.  Thankfully this has not happened in public...so far.  I have her diaper bag stuffed with changes of clothes, just in case.  It's not a matter of if...it's just a matter of when.

One thing I'm happy to say about Laurie is that although she has her certain likes and dislikes, we very rarely have drama from her.  Maybe that's because she can't really talk yet.  Maybe it's the autism.  Maybe it's just her personality.  Whatever.  I'm just thankful we'll likely escape the teenage angst.  Seems to be a perk of her flavor of autism.  And I'll take it where I can!



Sunday, July 14, 2013

Celiac...because life wasn't interesting enough...

When we began our journey down this twisting, turning autistic road, we received a lot of advice of what to do. My favorite has always been the advice to cut out all foods containing gluten (a protein found in wheat, rye & barley) and casein (which is a protein found in dairy products).  To do that was surely going to cure our kid...it cured Jenny McCarthy's kid, so why wouldn't it cure Laurie?  Why don't we just try it for a week or so and see what happens?  Just cut back on it a bit, and see if that does anything!

OMG!  Enough already.  I know that everyone means well, but just stop it.  I never actually said that to anyone, but I thought it on way too many occasions.  I mastered the art of nodding and smiling.  I swear that if there was science to back this up, I'd be all over trying just the diet for the sake of trying it. However, there wasn't any scientific evidence then, and there isn't any now.

Now if she actually had Celiac Disease, which is an immune reaction to eating gluten, that would be another story altogether.  We decided that the next time she needed a blood draw, we'd ask for that test as well, just to rule it all out.  No sense in altering lifestyles (any more than we have altered them already) and adding additional expense to the food budget all on a whim!

Then one day, opportunity came a-knockin'.  Laurie had to have her four year old vaccinations.  The nurse accidentally nicked herself with the needle after giving Laurie her shot, and that deems an automatic HIV blood test for the patient.  TA DA!  So we said, "Hey, since we have to wrestle her to the ground to take her blood for the really completely unnecessary HIV test, why don't you include a Celiac blood test?  Then we can get everyone to just be quiet and leave us the heck alone about this subject, once and for all."   I am paraphrasing, of course.  The nurse promised to call as soon as she got the results back.

So, you know those scenes that you see on TV and in the movies...the ones where upon hearing bad news, the starlets just collapse from shock?  Well, when she called and said, "Laurie has Celiac," I had one of those moments.  I actually collapsed into our recliner.  I could barely say anything at all.  Life, as I knew it, had ended.  This was worse than receiving the news that she was autistic.  Ridiculous, right?  Try having a kid who lived for PB&J, pizza, granola bars and goldfish....and now that stuff has to disappear (at least long-term temporarily until you find a reasonable substitute)!  Plus, baking was kind of an outlet for me.  So I gathered my wits about me, and I called John.  I think he may have thought I was joking.  Yeah, not so much.

First I turned to the internet.  Information overload!  I learned that if you go gluten-free, it was like an alcoholic giving up alcohol...you couldn't have any gluten at all.  Ever.  Even a grain of it could cause serious problems.  Cross-contamination is a HUGE problem.  For example, if you want to eat a hamburger, and it's been on a bun that was made with regular flour, you can't just take it off the bun and eat it because it was in contact with gluten.  There is no 3 second rule for food that has been in contact with gluten.

So then who was all freaked out?  Yep...that would be me.  We had Laurie see a pediatric gastroenterologist, who ended up performing an endoscopy, which confirmed the Celiac (the pediatric GI doc said that often those blood tests are false positives).  John, Annie & I were all tested for Celiac after that.  I was the only one who tested positive, so I [went completely insane and ate every glutenous food I could get my hands on - copious amounts of bread, cookies and muffins, as well as a very melty piece of tiramisu, were all consumed in the name of "this might be my last chance for gluten!"] had an endoscopy as well.  I do not have Celiac.


OK, maybe that's insensitive to Laurie, but I thought I would lose my mind if I had to go gluten-free as well.  It's not that I wouldn't, but come on!

With Laurie's health being number one priority, we saw a nutritionist who proved to know less than me (thanks to the information overload).  So the hubs took me to Barnes & Noble, and I found some books that actually proved to be helpful.  It was easier to look them over in person (a valid reason for keeping brick and mortar shops around).  I talked to friends and family, and while no one we knew actually had Celiac, a lot of people seemed to know others who were diagnosed with it.  I found some good websites (my favorite is The Gluten-Free Girl & the Chef - www.glutenfreegirl.com).  I studied the gluten-free aisles at Wegmans.  I bought a special app that tells you what foods are gluten free (it's called "Is That Gluten-Free?") for the iPod Touch. (It's also available for the Android-based products).  And finally I switched my kitchen over so that the gluten-free food was by itself.  The original intention was to have everyone in the family go gluten-free, but when it became evident that Laurie was going to relegate herself to the same few foods, it just didn't seem worth the expense or effort.  We will change over once she begins to eat more things, though.

I tried different recipes, different foods.  There was a huge learning curve.  You can't just simply substitute one gluten-free flour for regular flour.  No, ma'am!  You have to mix different flours, and hope for the best.  Yippee.  (I recently discovered that Wegmans has a good all purpose GF flour mix, so it's better now).

Anyway, this kid was having no part of the big switcheroo.  Finally she gave in and tried the Snyder's GF pretzels.  Score!  Then Glutino's oreo-like cookies and Kinnikinnick K-Kritter chocolate cookies were a hit.  But we couldn't get her to try pastas or breads or anything, you know, remotely healthy (she, thankfully, was always a fruit and sometimes veggie eater, so at least we had that going for us).  With the help of a wonderful behavioral therapist, and our awesome respite provider (both are named Rachel!), we have been getting Laurie to try new foods...and have had the greatest success with Wegman's brand of GF chicken nuggets.  Wegman's came out with these gems about a year ago, and Laurie started eating them about two-three months ago.  (As a side note, the Wegman's line of GF foods has been great so far...she absolutely loves their brand of gluten-free blueberry waffles).

As for the great big leaps and changes and cure for autism...nope.  We saw a little burst of verbal language about a month after the diet began.  I believe that was completely coincidental.  Laurie certainly wasn't cured.  All it did, in my opinion, was make an already rocky road even rockier.  We have to bring food for her wherever we go, because we don't know if we'll be able to find gluten-free foods that she'll actually eat.  You have to check all labels, so shopping & food preparation take longer.  But we deal with it, much like everything else that is thrown our way.

We're happy to say that Laurie is doing well on the diet.  We just wish she had a more varied diet, but for now, she's healthy and happy.  And that's what matters.


Friday, July 12, 2013

Ch-ch-ch-ch-changes...

So, your kid has autism!  Oh, boy!!  Your friends just don't know what to do...what to say...how to act.  It's not like you do either. You kind of muddle through the first few months, and maybe even the first year, and your friends are appropriately supportive, sometimes in a "trying too hard" kind of way.  Then things slowly start to change.  You don't talk like you used to.   Hanging out gets trickier.  You can chalk it up to your kids are growing up, they have different interests. But basically you have completely different paths. Conversations become fleeting, and finally you just don't have any interactions.  And that's okay.

And it really IS okay.  Thankfully you had some warning about this from a friend whose child had been diagnosed with autism a couple of years before your own.  You knew, in the back of your mind, that some of your friends would kind of fade into the background because you simply wouldn't have time for them (remember the zillions of therapies that start to fill in every second of free time?).  You really try not to let anyone fade...you put forth that more than good faith effort to keep up the lines of communication.  But in the end, you just aren't mentally prepared for certain friends who end up fading...

So you start to make friends with people who have only known you since "the diagnosis."  You reconnect with people from your past through social media.  They are really genuinely supportive, and in some cases, have turned into your own personal cheerleaders.  Some have wonderful kids with special needs...others have delightfully typical kids.  And that is pretty cool.

But occasionally you just have to wonder...what the heck happened to those other people??  I suppose this happens all through life.  But you will always be grateful for those who stuck by you through to the other side of normal...

Saturday, July 6, 2013

Elopement...it's not as romantic as it sounds...

What do you think of when someone says the word "elopement"?  That a young couple in love ran off and got married?  So romantic, right?

Now let's look at the other definition:
 to slip away : ESCAPE.  Insert picture of Laurie the Eloper here:




Elopement is common with people who have autism.  And let me be the first to tell you that it is scary as hell.  Imagine that your kid is RIGHT there beside you one second, and the next she has seemingly disappeared into thin air.  Sometimes you have a clue as to which way she goes.  Other times, you don't even know where to begin.  Thankfully, you find her each time.

I'm sure by now you can gather that Laurie has been eloping.  Laurie is opportunistic.  She is SO unbelievably smart.  But she has no fear, and she is non-verbal, so she can't even tell someone that she's lost...if she figured out she was lost.


Laurie takes off on us when we have our backs turned for even a second.  Usually she runs to the car...she's ever hopeful that we'll take her to her mothership...the originator of the noise hangover for parents everywhere...Chuck E. Cheese.  But lately she's been taking off in the direction of our neighbors' houses.  One neighbor has kids' toys on the back deck (they have grandkids).  Another neighbor has a pool that would take Laurie approximately 4 seconds to jump into (she's just that crafty and agile).  And if Laurie is so inclined, she can just continue on down the hill through our neighborhood and get to the parkway...beyond that is the highway, and on the other side of that is the Susquehanna River.  Now that is an extreme scenario, but it's not out of the realm of possibilities.  We've all heard stories of people who have wandered and have ended up in locations far from their home.


She's also disappeared at Wegmans, a grocery store chain in upstate NY.  You should see their lock-down system.  It's so impressive.  We've seen it twice now.  And if I ever see it in action again, I might cry.  I'll write about my love of Wegmans, and specifically how they handled our lost child, in another post.  Suffice it to say that Wegmans (as a whole) is my hero.  Superman ain't got nothin' on them!


Anyway, since the eloping from our home has also kicked up few notches, we have been making some adjustments to our home and to our daily lives in general.  We have alarms that SCREAM when you open the doors.  It doesn't deter her in the least, but it does tell us that Laurie could be on the loose!  Annie will usually drop everything and chase after her...if she's not absorbed in a book, that is.  Annie is a wonderful big sister.


I've been working on getting specialized locks that require a passcode.  Our Service Coordinator has been helping us with this process.  And I tend to take daily photos of her just so I remember what she was wearing (assuming she has not stripped down to nothing).  It is surprising just how much you forget when you are panicking.


We use a special enclosed bed that will keep her safe at night, and in case of a fire, I know EXACTLY where she is!  This is a photo of her actual bed at the shop in Maine. Patrick Cyr, the owner and creator of the Courtney Bed, makes these beds by hand:



Courtney Bed:  http://www.cyrdesigns.com/


We have a special child harness that we use when we go out in public.  We purchased it from a company in Canada, because apparently here in the US, keeping your child from becoming a pancake is a bit frowned upon if you have said child on a "leash."  Laurie has a pink harness, and doesn't seem to mind it at all.  The owner, Elaine, was very helpful and patient...I emailed her a zillion questions before I purchased it.  It looks similar to this:  

Child Harnesses by Elaine:  http://www.childharness.ca/

When we travel overnight, we use the Nickel Bed Tent.  You can use a twin mattress with it.  If you use an air mattress instead of a regular mattress, be sure to wedge the tent between the wall and another piece of heavy furniture...it is easily tipped over with the air mattress.  This is what it looks like:



Nickel Bed by Ready, Set, Bloom, LLC:  http://myreadysetbloom.com/



We did have assistance with the Courtney Bed, but all of these items are worth every single penny.


I've "registered" her with the Sheriff's office, and she's been fingerprinted.  I've also been investigating GPS systems.  I'm ready to go all kinds of Big Brother with this kid.


And in case you are wondering, "Hey, maybe you should just work on her behaviors," let me just say that is a fabulous idea!  Now why didn't I think of that?  Oh, wait, I did.  Off and on we've been working on this, beginning with just stopping at the end of the driveway (that started when she was three).  Now Laurie is almost 7, she's super-strong and very quick.  She forgets nothing and is very stubborn.  So if she finds out that our neighbor has a pool (something I've tried to keep from her), then she'll head over there every chance she gets.


Laurie does have a wonderful behavioral therapist who works with her.  We've been working on other things, such as eating new foods and potty training (two very important things!), but I think we'll be turning our attention (in full-force) to the eloping for the time being.


So, in a nutshell, eloping among the autistic is not romantic as it sounds...