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...

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...

She Swims!!

A big fear of mine for a very long time has been Laurie's attraction to water.  The person who diagnosed her said the most important thing we could do for her was to have her learn how to swim...complete with being able to get out of the pool fully clothed.  So, we had Laurie participate in aquatherapy and Special Olympics swimming, and would often take her to the pool, but she's never had formal lessons.  Mostly she would just wear her life vest and would just bob along in the pool quite happily.  Until recently, she had not been showing the ability to really listen and follow directions, so we weren't sure how to approach the whole "learn to swim" thing.  Plus, I had not been able to find a place that had lessons for special needs kids.  

Then suddenly, Laurie started running away from our house (elopement is common with kids on the spectrum...that's a story for another time).  We don't live far from a river, and our neighbor has a pool that isn't exactly "Laurie-proof."  So...panic time!!  No, not really, but it was time for yet more conversations with family and friends about how to handle swimming.  And it was time for another round of phone calls to the local swim clubs.  And this time we had success!  The Boys and Girls Club has an amazing aquatics director who really listened to my concerns, and she worked it so that Laurie will have someone assigned just to her for the summer swim sessions.  And then they have Adaptive Aquatics during the school year.  Score!  Laurie's all signed up!

The day before her lessons began, the hubs had taken the girls swimming, and he purposely did not put Laurie's life vest on her.  Who was freaked out just a little?  Yep...me.  But by the end of their time in the pool, Laurie was able to doggy-paddle herself 5 feet or more to the side of the pool.  Who knew?  It was awesome.  

At swim lessons, she's paired with this awesome instructor named Mackenzie.  Mackenzie has been able to get Laurie to swim.  All she has to do is merely suggest that Laurie put her face in the water, and Laurie will swim away from her.  Seriously.  But when she's not paddling away from her instructor, Laurie is willing to be pulled along on her back, and will kick her feet (who doesn't love the huge splashes that ensue?).









She loves playing with the pool noodles.   

And she's able to swim across the pool partly with assistance, and partly on her own...always in an upright position (there's no putting her face in the water, remember?).

So we're thrilled.  It's taken our anxiety about pools down a 1/4 notch.  I know that we have a few extra seconds now.  And that could make all the difference in the world.

Please make sure that your seat backs and tray tables are in their upright and locked positions...

Welcome!  Buckle up...autism is our trip!

So they say that having a child will completely rock your world. This is true. Ask any new parent. You might think that you're prepared for what having a baby is like...after all, you've spent countless hours babysitting...what's not to know? WRONG. You don't know ANYTHING!! Why...WHY won't the baby stop crying? How does the car seat work? Why won't the baby sleep through the night? How many stupid snaps are on those sleepers anyway?  A body that little can emit those ear piercing sounds??

But, things start to even out, and you get into a routine. Your little girl is absolutely adorable with her bald little head, her beautiful toothless grin and her infectious laugh. She's happy almost all of the time, and has hit all of her milestones. And so you decide, hey, let's have another baby.

And so you do! And your world is rocked once again, but in a good way. Your new baby girl is equally adorable as your first daughter, with a similar toothless grin and a different infectious laugh.

Things are going wonderfully - baby #2 is hitting all of her milestones ahead of schedule and ahead of her peers....until she stops making progress, and her peers surpass her. She seems to not hear you when you call her name, but put the Wiggles on the TV, and she'll come running from the other room saying "Wigga, Wigga, Wigga". The words that she could say seem to...go away. Her incredibly varied palate diminishes to goldfish, granola bars and fruits. 

So, you take her to her pediatrician. You walk in and proclaim, "There is something not quite right, but I don't think it's autism." The doctor doesn't commit, asks you what seems like a thousand questions, and then says, "Let's just have her evaluated for speech delays and hearing impairments." He's also going have them do an occupational therapy (what in the HECK is THAT?) evaluation at the same time.

You go and have the evals done. While they can't get a read on her hearing (she's not exactly cooperative!), she does qualify for many services. And after many conversations and a LOT of internet research, you realize that your baby girl does, in fact, show red flags for autism. And so....you have yet another evaluation. While you are expecting a diagnosis of autism, you're still heartbroken to hear the words, "Laurie is mildly-moderately autistic."

So, you're sad for a while and then decide that it's time to swing into action. Because of the diagnosis of autism, more therapies are approved...Early Intervention is key, or so they say. And then the fun begins. Your life becomes a series of therapies, doctor appointments and evaluations, as well as a Mommy & Me preschool and gymnastics. There is ALWAYS someone in your house. And all of this is just for your autistic child. Throw in your typical daughter and her preschool, gymnastics, soccer and t-ball, on top of play dates, trips to the grocery store and park, and you are just always on the go.  

And you never slow down.  

So come along on our ride, because autism is our trip!