Wednesday, June 10, 2015

The Single Most Frightening Moment of My Life: Our Experience with Autism and Eloping

She answered Grumpa later, after it was all over, when he asked her where she had been going all by herself, with one word: "Home."  

I feel like I should start with that sentence instead of the story itself so that you can know how the story ends, that she's fine, safely tucked into bed with rosy pink cheeks from the sun and heat, and with slightly sore feet from the hot blacktop.

It all started after lunch today.  We'd spent the morning outside with the kids playing in the their little blow up pools on the porch.  We were talking about going outside to have popsicles, but the heat had already become oppressive as it hovered right around a hundred, and no one really wanted to leave the air conditioned living room.

Mae was in the kitchen, which opens up into the living room, but I couldn't see her from where I was sitting with James sleeping next to me and Patch curled up on my lap.  She'd been playing with her PECS book and had surrounded herself with a huge amount of toys.

"I'm going to check on her."  I said to my mom as I got up and put Patch down on the couch.  "It's been a little too quiet for a little too long."

I was half joking when I said the words.  It had been too quiet but I didn't really believe that anything was wrong.  Not at that moment anyways.  My parents have outfitted their house with more locks than our own home has.  Every door has at least two heavy duty bolts on it.

But when I went in the kitchen she wasn't there.  And before I turned to look upstairs I saw it.  The latch on the kitchen door hadn't quite caught and closed all the way.  She'd been able to open it.

I ran to the outer door.  Because the inner door was locked we'd been more careless with this one, single outer door, which lead to the garage.  We were all using to go in and out of the house.  I silently hoped that the garage itself was closed but when I pulled the door open the room was filled with light and I knew instantly that it wasn't.

And she was nowhere in sight.

I ran out into the drive way, screaming for my mom as the door slammed shut and yelling for Mae in the next breath.  I ran down the driveway, hardly noticing I didn't have shoes on my feet.  How far could she have gone?

How long had it been quiet?  Five minutes.  Five minutes tops.

I made it to the end of the driveway and looked everywhere.  She wasn't on the porch or in the backyard.  She wasn't in the garden or in with the horses.  She wasn't between my parents' and grandparents' houses.  She wasn't over by the orchard or in the groves of trees right in front of me and she wasn't on the road down to the river or up to the main road.

I couldn't see her anywhere.

I could hear my Mom screaming for my Dad, telling him Maggie was gone as I took off at a sprint towards the river.  I ran down the dirt road, hardly feeling the rocks and fox tails and little pieces of glass under my bare feet.  I made it to the giant flood plain at the bottom of the property line and kept running.

How could she have disappeared so fast?  She was nowhere to be seen.

Halfway across the flood plain the searing pain started.  I screamed for Maggie, for help, to God to keep her safe.  I ran for as far as I could and fell, holding my feet before getting up and running another ten steps.

I couldn't go back for shoes.  What if she was at the river at that very moment and if I'd pushed on through pain I would be there in time to save her, but if I went back I wouldn't be?  How would I go on wondering whether, if I'd just pushed through the pain, she would have been okay?

I kept running and falling and getting back up until I came to the twenty foot drop off, where the river carved a steep bank this year, and looked over the edge.  She was nowhere to be seen.

I looked upriver and downriver and turned and scanned the vast wilderness that stretched away in every direction.  The forest was silent and still.

My mom was running down the road and I yelled to ask if they'd found her.  She said they hadn't and I felt my heart squeeze in my chest.  When she reached me she gave me her shoes and I threw her the tank top I'd taken off and tried to wrap around my feet as I was running for her to stand on.

Dad was already driving down the hill.  When I got to him he quickly told me he'd called 911 and the sheriff and dogs and search teams were on their way.

I ran up the hill and into the house and traded my moms flip flops for my shoes before heading back out the door.  Sadie was sitting next to James praying as Patch played nearby.

I ran into the backyard and looked around, not expecting to see her and then I jumped the fence that Dad put up to keep the kids in the backyard and plunged into the gully behind the house, hoping that I wouldn't step on a rattlesnake as I hurdled over rocks.  My feet were squishing in my shoes, with an odd sloshing feeling but I kept running, yelling all the while.

I sprinted up the hill looking left and right, yelling her name over and over again.  There was a creek off to my left through thick brush, which I didn't realize right away was dry because of the drought.  I headed for the house of a sweet neighbor lady who knows the area well and she heard me coming and came outside.  She ran inside to get her shoes on as Dad drove by up another driveway, honking to bring everyone outside who might help.

He gave me Maggie's tutu in case I ran into anyone with search dogs before he did and I saw her tights sitting on the front seat as he drove on up the road.

With two of our neighbors and their two dogs we headed back down towards the river.  One of the women in the second house thought she'd heard a child crying and so I took off in the direction they'd pointed, after explaining quickly that Mae's autistic and likely wouldn't answer if called.

As I headed off down a path that borders the river and approaches it from another angle I heard three loud honks.  We all froze.  I looked at the neighbor who I'd never spoken to before today and said "does that mean..." as I heard Dad yell, "I've got her."

A few minutes later he came driving down the road.

We ran to meet him and there she was, sitting on the passenger seat, sweaty and with rosy cheeks, barefoot in pink tights and a pink dress.

I scooped her up in my arms and kissed her face and held onto her tightly.  She kissed me back, completely unimpressed with all the excitement.  I introduced her to our neighbors and thanked them as Dad drove down to the river where Mom was watching the banks to make sure she didn't head that way if she hadn't already.

With everyone gone I started to walk towards the house carrying Maggie, but as the energy that had carried me that far ebbed, I found myself taking teeny tiny steps.  "Come on!" Mae said in an exasperated tone ("come on" was a phrase she had even when she only had about ten words) and I hobbled back to the house and got her in the door where Sadie told me that Patch had been getting into trouble trying to go into Grumpa's office.

I secured the doors and waited for Dad to find Mom.

When he returned I began to piece together the rest of the story.

She'd walked up the long dirt driveway to the main road and had turned towards the highway when she reached it.  A man who'd been driving on the road had seen her and started to follow her to make sure she was okay.  She'd headed across a large flat expanse and past a huge gully, before heading down into the forest.  Shortly after she'd gone into the forest, the cavalry had arrived in the form of the US Forest Service.

Apparently the response to my Dad's call had been quick and efficient.  By the time he got there the Forest Service, volunteer firefighters and sheriff's deputies were on the scene.  They told him that the first Forest Service guy had jumped out of the truck and said hi to her and she'd barreled on past, so that he had caught her and scooped her up and put her in the forestry truck.

She'd gotten down and sat on the floor in the truck, they said, but wouldn't respond to any of their questions (they'd gotten the message that a four year old girl was missing, but not that she was autistic).

The dogs and helicopter and search crews who were on their way were turned back.

Back at the house two sheriff's deputies arrived and went over what had happened.  All of us were amazed at how far she'd made it in such a short amount of time.  When we measured it was six tenths of a mile from our house and we think it was probably about fifteen minutes from the time she left until she was found.

The deputies took down my name and contact information in case she ever manages to elope again (although at this point you could already see Dad thinking of the new round of security measures, which include alarms) and I thanked them about fifty times as I hobbled after them to the door.

About an hour after she was safely home, as the adrenaline ebbed, I realized that I should probably see a doctor.  The burns on the bottom of my feet had blistered, and the soles of both feet were completely covered, with the exception of my arches, with blisters.  I quickly found that I could no longer walk.

My grandparent's doctors office squeezed me in and I realized that the burns were a little worse than I thought when I heard the words "I'll be very happy if this heals up in about three weeks."  Other advice included icing and keeping off them entirely, which is proving very, very difficult.

I held Mae's hand as she fell asleep in my bed tonight, playing with my fingers.  She'd kissed my face about a hundred times when she got back, giggling the entire time, completely oblivious to the danger she'd been in.

I explained, for the hundredth time, that she can't go out like that by herself, that I can't lose her.

And now I'm slowly beginning to process what happened.  As it was happening it didn't quite seem real.  It was more like running through the most horrible nightmare I could imagine, with my greatest fear realized.

I spent those first frantic minutes praying that she would be found as I called her name over and over again and I've spent the rest of the afternoon thanking God and her guardian angels for bringing her back to us.

Now to try to get some sleep.  Tomorrow I'm going to try borrowing a cane from next door to see if that will help at all with the little bit of getting around that I do need to do, while I try not to walk at all.

I am so thankful for my parents and our neighbors, for the man who stopped and made sure she was okay and for the forestry guy and all the first responders who saved the day today.  I am definitely going to be writing a thank you letter in the letters to the editor for next week... although I'm not sure words can adequately express just how grateful I am that they found our little girl before anything happened to her.

Tuesday, June 9, 2015

Maggie's PECS Book and a Missing Mermaid

Before we left for the trip, Mae's speech therapist gave me a PECS (Picture Exchange Communication) board to practice using with her while we were away.  She'd had me email her pictures of some of Maggie's favorite toys before her last session, so there was a few lines with pictures of her own toys, along with things she might need to do like use the potty or wash her hands or play on the playground. 

Right now there are only two and a half pages of little laminated pictures with Velcro on the back, but I can already see that I'm definitely going to make more when we get back to Michigan and I have my laminator and crafting supply of Velcro. 

She loves using it . The pictures are already looking old and beat up because she is constantly playing with them.  She knows exactly where each picture goes and if I take one out of order she quickly puts them back in the "proper" place. 

The first full day here in California she was quick to show me that I'd made a mistake when I packed her little back pack full of toys.  I'd filled her bag with mermaids and ballerinas, but she has so many mermaids that I couldn't bring them all and a well loved Dora mermaid was left behind.  I didn't think it was a big deal, but apparently it was. 


Every time we open the book she points to a particular pair of pink shoes and the Dora mermaid.  They are two (out of three) things in the book that I didn't bring (apparently it was okay that I left roller skating Boots at home). 

And not only is she showing me the pictures, she says the word when she shows me each card.  Seeing both the word and the picture definitely seem to be helping her find the words to say out loud.

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In other news this morning when I brought Patch and James downstairs this morning I noticed that Maggie was wearing his flashing Cars sandals. 

When Grumpa came downstairs he noticed the same thing.  And the following conversation had me smiling from ear to ear. 

Grumpa:  "What's that on your feet Maggie?  Who's shoes are those?"
Maggie:  "Mine."
(a few minutes later after more talk of the shoes)
Grumpa:  "Are you trying to play a trick on someone?"
Maggie:  "Yes!"

Saying yes is a big deal since saying yes and no to questions is something that she's been working on in therapy for the last few months and I think this is the first time she's said the word spontaneously in a conversation! 

Monday, June 8, 2015

The Great Cross Country Road Trip

It's only 8:33 pm on Sunday night as I begin to type, but my body is still trying to convince me that it's 11:33 pm back in Michigan and so we'll have to see how this goes  (and how it went was that I fell asleep before I finished writing and finished this post this morning). 

First things first: we made it to California safe and sound! 

Secondly, since sharing a hotel room with our four kids, one of whom does not do time changes well, meant stealing as much sleep as I could from our nights, I didn't manage a single post from the road. 

So this post is a mash up of everything that happened since we set off from Michigan last Wednesday and began driving across the country. 

We drive because I would rather spend approximately forty hours in a car with my kids than spend six hours on a plane with them.

Okay not all of them. Mostly Patch.  I would take Maggie on a plane in a heartbeat.  She's so overwhelmed by the wonderfulness of flying that she seldom makes a sound.  But I'm not quite over the traumatic experience that was our last flight across the country and I love driving cross country, so a road trip it was.  With Nani and Grumpa (who Patch is now calling Bo-Pa) because Paul is staying back in Michigan being super busy.

He'll come out and drive back with us in August and we'll have another fun cross country road trip, again.

Maggie had done so well in Sadie's booster seat, so I let her try out her seat as a booster (while making sure we kept the five point harness in the car).  She did awesome at first.


She lasted as far as Indiana.  And then she decided it was hilarious (in her mind) to try to sneak out of the chest strap and we pulled over and I reassembled the car seat on the side of the road in something like fifty thousand percent humidity. 

Then we were back on the road.
 
 
We stopped for lunch in Indiana...


Before heading on to Illinois. 

And I have to say.  I love the narrow states when I'm driving east to west or west to east.  It feels like you've accomplished so much in a cross country drive when you can quickly make your way across two states.


I would have really liked to have make it all the way across Iowa the first day, but we weren't quite back in the swing of spending all day in the car and by 5 pm (after leaving at 8:30) the kids were tired out and so we stopped outside of Iowa City.

 
It was on this particular night that Patch, who has formerly loved Mickey Mouse (and who has been wearing a lot of Mickey Mouse t-shirts lately, which I'd happened to pack) saw him on television and decided he was terrifying, to the point where he was trembling after the TV was off and I had to promise him repeatedly that the TV wouldn't be coming back on.
 
 

Maggie had lots of firsts on the trip, trying on dresses that weren't pink, that she'd had for at least a year and refused to wear, that she suddenly realized she really liked.  She also started talking a lot.  And sang the Bubble Guppies theme song to herself, for much of the drive:


That first night in Iowa was wild.  No one did all that well going to sleep in a new place.  Patch was up from one to three and then Maggie woke up at four. 

We were on the road by seven, but no one had gotten all that much sleep.


Still, before lunch time we were headed into Nebraska.



And after driving straight through, with a quick stop for lunch, we made it to Wyoming as the sun was sinking down out of the sky:


We stopped in Cheyenne for our second night on the road. 

The kids were exhausted from their sleepless night in Iowa and crashed as soon as we made it up to our room.  And this time they all slept until four am.  Which meant we were on the road by six.


Driving across Wyoming with Patch was kind of hilarious.  He was like the narrator of the trip in the back of the car and we heard this during most of the time he was awake:

"Look!  Look!  A rock!  Look a rock.  I see rock.  I see rock.  Look.  I see cow.  I see rock.  Look!  Look!"

And he was so excited every single time that he said it that it never got old. 
 
 
We stopped for lunch in Salt Lake City.
 

But by bedtime that night we were tucking the kids in, in Elko, Nevada. 



The fact that the kids slept in until 4:15 Pacific Time felt like a small victory and we were on the road again by six.  Here's Maggie waiting by the door.  She was so impatient to get back into the car each morning:


We drove straight on through Nevada.



And finally we crossed the border into California.


And before dinner time we were at Nani and Grumpa's house up in the mountains, which will be our home for summer while Paul is busy getting things done and working back in Michigan. 


The kids almost slept in until 5 this morning, which is huge, because the last time we were here for two weeks she never slept past 3.  Mae's internal clock is not easily reset. 


We've already had a few adventures with the wildlife (involving a skunk and a buck), and we're enjoying the dry heat (I still haven't quite gotten used to the humidity back home) and lots of water fights on the porch! 

Now to go get dressed.  Sadie's already made me promise we'll have a water fight this morning! 

Tuesday, June 2, 2015

Big Days

I hadn't meant to take a little blogging break this past week but it's been quite the whirlwind and I've been falling asleep before managing to type a single word.  

In the past week we said goodbye to all of Maggie's therapists.  We'll see most of them again in August (although we said a sad goodbye to one of her favorite therapists who's been with us for a year and a half who's going back to school after the summer).  Maggie is getting summer vacation and the kids and I are about to take a cross country trip with Nani and Grandpa to California.

Maggie proved that she was big enough to sit in a booster seat.  She borrowed her sister's and sat perfectly still with a huge smile on her face for a drive to ABA.  This convinced me to buy her a princess booster seat (with a high back) as an early birthday present.  It should arrive today and I have a feeling she's going to be thrilled (I mentioned it and she started to giggle hysterically and jump around the room).


Nani and Grandpa arrived and Patch has spent a huge amount of time climbing up into Grandpa's lap and saying "ready, set, go" so Grandpa will tickle him:


Much of the weekend was spent getting ready for Sadie's big performance last night.  Her dress rehearsal was on Saturday:


And here's a clip I took at the rehearsal.  She's the little girl on the far left.  It was totally washed out by the lights, but you can still totally see the way she bobs her head and totally gets into what she's doing:


In a super brave moment I agreed a few weeks ago to go on the Children Marathon Network's telethon.  

And we did.

Maggie's OT was there as backup, but Maggie still stole the show when she jumped up and ran around the stage to try to steal a Miss Michigan contestants crown (she was answering phones) and then ran back and forth playing with a mascot Tiger that was there, running up to touch the tiger's hand, while laughing hysterically.  


They gave each of the kids who came on TV medals.  Sadie's is my favorite (the one with the pig):


Then we said our last goodbye to Mae's super awesome OT:


On Sunday Paul and I got to go to Mass together by ourselves and got to go on a date later that night:


And we returned home to a happy James.

He was not happy any time Nani tried to take that Fire Fighter steering wheel away from him:


On Monday two very nice grandparent's gave us a very, very big gift.  Apparently the rattling in our other car made them more than a little nervous for the safety of the entire family:


Then we drove to Red Robin, which is now my new favorite restaurant, because not only do they have a dedicated fryer for the fries, they have the best gluten free buns I've ever seen.  The manager was great and brought out a tablet to use that allows you to select allergens.  I was hugely impressed.

And Maggie loved it.


After a few days of rainy cold weather, the kids were pretty thrilled to go to the park:


I've discovered that I can get Maggie to wear just about any outfit as long as I have matching tights.  And shoes.





And then it was finally time to get ready for the big performance:


We layered on the makeup so they wouldn't be washed out by the stage lights.  She loved it:


The performance was so much fun.  Sadie loved it.

Maggie and Patch were pretty rowdy before the performance but as soon as the music came on and the curtain open and they saw their sister on stage they were totally silent.  Maggie was smiling from ear to ear when Sadie came out from back stage.




And then it was time for bed after a long day!

I'm not sure how much internet access I'll have in the coming days, but once we get to California I'm planning on hitting the ground running with my writing again!

And I'm sure we'll have stories from our cross country trip!