A Small Victory!

My little girl. My hilarious little nudist. She has so many emotions. Like this one:

I won't let her lick raw chicken

My sweet, smart, silly, random, hot mess who fell asleep tonight on Ruby Sue's giant teddy...buck naked...with a bottle of Parmesan cheese. I'm not kidding. I can't make this stuff up.

Sis loves her some parm cheese

My bundle of energy, bundle of joy, tomboy, dinosaur-loving little angel.

She scares us to death.

I worry about her non-stop. I worried about her when I was pregnant, as a newborn, and now and forever. All the normal Mom worries, but times 100. Because I'm not a normal Mom, I'm an "a word" Mom. I worry about right now, tomorrow, and kindergarten, and adulthood. Even when I'm sleeping - its with one eye open. If I could function on no sleep and it were healthy for my marriage, she would sleep in the middle of us, in our bed from now until I die. This job is from wake-up til bedtime. If she decides to sleep, that is. There is never a moment "off." It's non-stop.

Oh, yah. It's because of that whole safety thing.

I can't possibly get anyone to grasp the importance of what happened today without some background info. Stay with me. Or don't and stop reading now. Whatever. It's going to be a long one. 

This thing is 100% therapy for me. And it's cheaper than real therapy, so for now - writing stuff down just helps. If no one reads, it's totally fine.

<<disclaimer:>> we're good parents. We watch our child the best we can. Despite all the due diligence in the world - my sweet little girl is fast. and sneaky. and fearless. and too smart for her own good. She's also easily distracted and a bit of a wanderlust.

In warm weather months, my house is cat nip for neighborhood kids. I have a cute little toddler and a big puppy, and the neighbor kids seem to flock over to my house. I love it. Dirty feet and popsicle sticky and laughter bouncing off the interior walls - its pure joy and childhood innocence and I love it! The neighbor kids are always welcome at my home. If they're at my house I know they're safe and fed. And it's good for Elsie. I love it. I love our neighborhood.

One early summer Saturday afternoon, I went out to run errands. Ben put Elsie down for a nap. All is quiet in the Wood house and Ben takes the opportunity to go potty alone. When he comes out, the house is still quiet. He doesn't dare go upstairs and risk waking the cracken. (A nickname coined by her Uncle Matt when she was little. Ha!)

Sometime later, two neighborhood girls knock on our patio door. One holding the collar of a giant, strong Saint Bernard puppy. The other holding Elsie's hand. "Ummm....did you know Elsie and Ruby were outside??" A few houses over, playing in a neighbor's front yard about 400 yards away. Alone. "NO!! I thought she was taking a nap!! THANK YOU!!!"

Our fast, sneaky, too smart for her own good little girl figured out how to open the back door. At the time, it was secured by a handle latch and a safety bar that stretches across the middle of the door, keeping it from opening. She pulled up a chair, climbed up to open the bar, flipped the latch, went outside, and shut the door behind her. !!!!!!!!!!

Thank God. Thank God for those little girls, whose Dad happens to work at the same company as Ben, and our enormous puppy. Elsie and Ruby knew those girls. Thank God. What would of happened if they didn't? A million awful what-ifs that didn't happen. Thank God for those girls.

Thank God for our enormous puppy. Though she was just a baby, those guarding instincts kicked in and she followed Elsie and stayed with her. She'd much rather run laps around the neighborhood. She didn't. All the Saint Bernard messes - potty training and muddy paw prints and hair and drool - they're worth it and then some. There is no doubt in my mind Ruby Sue quite possibly saved my daughter's life. After all the HOLY COW wore off, we laughed about it and moved on.

Then, its 4th of July. We join our neighbors for a fire pit in their back yard (which borders ours). The adults are sitting around a fire and the kids are on a play set maybe 200 feet away. We're watching Elsie, then I don't see her. I yell "where's Elsie?"

<edit: I originally said 200 yards, I meant 200 FEET!! I'd never let her play that far away....late night math ;) >

"She's running through that front yard!"  Ben sprints in her direction. By the time he catches up with her, she's run through a backyard, a front yard, ACROSS THE STREET, and into another yard. She saw something shiny and bolted. The across-the-street neighbors have a fire pit in their yard with a large group of people. One of the home-owners happens to be a cop. nice.

We decide we should take some extra safety precautions. Meaning, we put safety handles on all of our doors and move on. We watch her like a hawk. But, she's so fast. and sneaky. and too smart for her own good.

Fast forward to Labor Day. My Dad's in town. I'm feeling brave. While the boys are fishing, I decide to go shopping. I only intended to hit up half off day at Goodwill for crafty treasures, but I somehow made it to Nordstrom Rack instead. I saw the sale sign. The entire trip is worthy of it's own post. It's full of distractions and re-direction, sadness and tears and tantrums and one over-the-top meltdown. Elsie is on a level 100 meltdown. It's a  Mommy's lying on top of her restraining her in the back of the shoe department while we're both crying (AGAIN) type of shopping trip. She calms down and I get up. I blink. She's GONE. My fast, sneaky, too smart for her own good little girl had enough and she bolted. QUICKLY. and hid. "A word" kids like to hide when they're overwhelmed. I look. and look. and look. She's nowhere. A big department store on a busy street and she's gone.

For the first and only time in my entire life, I heard the voice of God. He told me what to do and I listened. It was a pretty life changing event, actually. I found her. Finally. I have no idea how much time has passed, but it's too much. The most terrifying moments of my entire life. ever.

At this point, we're thinking there's more to the story than a few scary incidents. We'll figure out something later. We've not had a chance to talk about it, really. For that day, Ben calms me down and we spend the rest of the evening enjoying time with my Dad....til that night.

Elsie's had night terrors for as long as I can remember. She had one two nights ago. They're awful. She wakes up terrified, screaming, crying, and she's just "not there."

That same night, Labor Day, Ben jumped out of bed and flew downstairs. The man sleeps hard - he can sleep with Elsie screaming in his face and jumping on him. That night he heard her. Downstairs. Trying to break off the safety handles to open the door to the garage to LEAVE OUR HOUSE. In the middle of the night. She's sleepwalking. Oh, nice. That's new.

Yet again, in the same day - there's no way to describe it other than God kept our baby safe. AGAIN. 

I had stayed up late that night and before going to bed, I decided to double check the house. The big garage door was open. OPEN! As in, if you're in my garage there's no barrier between you and the street. Not even a month before, we had put on safety handles. What if we hadn't put on the handles? What if I hadn't double checked the house? What if she'd gotten out? In the middle of the night? What if she'd gotten in the neighbor's pond? Or walked to the city park? Through the woods? A million what-ifs that thankfully didn't happen.        

We're terrified. My Dad is concerned. So is my Mom, half a country away.

The next day my Dad took me to the hardware store for third or fourth locks, for all our doors. Locks we can install high that she can't reach. For now. Then, he helped Ben install all of them and Elsie-proof our doors.

My Mom does a ton of research and sends me a link to a website about "a word" safety. We learn about autistic kids' propensity to wander (yep! that's our kid!). A lot of scary things can and have happened to many autistic children who have wandered off or bolted, or saw a shiny object and disappeared. Despite all the due diligence in the world, these kids are quick and smart. We learn some things we can do to help her stay safe. This is serious. We're terrified. Wandering, sleepwalking, night terrors...just what we needed, right?

As recommended, we called the police department and talked to them about our little girl. Then, we put this flier in the mailboxes of half our neighborhood. Any home whose yard or street borders ours....they got this flier.

 

Y'all, please let me tell you how hard that was. We had to ask half our neighborhood for help. We had to. I was terrified. What if they think we're terrible parents? What if they judge us? or her? What is this comes back to haunt her in middle school? The humility of having to ask half your neighborhood for help is a real kick in the gut. We had to do it.

Also, on the to-do list: door alarms, a privacy fence, a GPS bracelet, etc, etc...It's all on the list. Little by little we're getting it done but autism is f'ing expensive and we're doing it one thing at a time.

We, I, also want to take her on a field trip to the police station. I'm probably going crazy over the top but I don't want to be in a what-if situation. ever. I want them to have current photos, contact info, fingerprints, and DNA samples. just in case. IF she ever goes missing, I want them to go out and look ASAP. I don't want to waste time with paperwork. What if. The "what ifs" keeps me up at night.

***finally** enough background info for the real reason for this post. VICTORY!!!!

People in our neighborhood drive way too fast. With everything our family is going through, nothing we can possibly do is enough. When it comes to the safety of our child, our special needs child, nothing is ever enough.

for-e-verrrr ago Ben contacted the city about getting signs for our neighborhood bc people drive like jerks. way too fast. We can't enjoy our front yard. What if she escapes without us noticing? Glaring lights and a honking horn can't escape Elsie from her world. People need to slow down.

Dozens of calls and emails, and we can't seem to get a response. My husband, the best Dad in the Universe, is not letting this go. He took it all the way to the Mayor. He's persistent, and probably a little annoying. We want a sign. We need a sign. They agree, but they're all blah blah I don't know when, city budgets, blah blah, you may have to pay for it blah. My in-laws generously agreed to pay for them. Anything to help keep our princess safe. We told the city we didn't care what we had to do. Anything. Then never heard anything else about it.

Months later, today, on the way home, it was there! Random surprise! Woooo HOOOOO!! Wood fam for the win!!!

BOOM!!!! That's our house!

Small victories. Whatever it takes. There are two, one by our house and one a few houses down. YAY DADDY!!! Y'all, he's done everything from petitioning for road signs, to emailing our congresspeople about funding for Autism treatment and research. He is simply amazing. These signs certainly won't solve all Wood family safety issues, but it's a drop in the bucket for our peace of mind and we're ecstatic. YAY DADDY!

I've written a novel, and if you're still with me...can I ask a favor? Will you PLEASE say some prayers for us?

If you don't need to know why, then just do it. If  you're curious, click here: A Little Help From My Friends

Little Help From My Friends

I need help. Not even gonna pretend like we have everything 100% under control. We need help. Right now, via prayers for the mountain of paperwork we mailed today. Unless you wanna come over and babysit, I'll take that too. :)

There are a lot of if/then/maybes involved, but we are really hoping everything works out.

We just got a social worker. There's so much help out there we're just now finding out about.

As of now, our family is not eligible for Medical Assistance (MA). BUT, there's a program called TEFRA, for special needs children and families. Basically, IF Elsie is approved and all the exemptions go through, we can purchase a secondary MA/TEFRA insurance policy for a monthly parental fee, at a very discounted rate, via sliding scale.

This is HUGE because, Autism is really stinking expensive.  Our private insurance is not super duper amazing, and they're picky about what Autism treatments they feel like helping with and/or feel are necessary. And our deductible is just dumb.

TEFRA, (MA), is HUGE because state insurance covers ALL Autism treatment. A new bill just passed. So, if ,if and if, we could have all the overages of all Elsie's care covered through her secondary insurance. Funny, how you feel a little different about Obamacare when it may affect your own family.

IF Elsie is approved, and IF the parental fee makes sense, we can MAYBE use some of those state dollars for some help around here. We MIGHT be able to get a PCA to spend an allotted number of weekly hours working with Elsie, or a housekeeper, or a teacher to continue working with her in our home. Or, we can hire our own personal care team to work with her for however many weekly hours we are approved. SWEET!!!! She's already been PCA approved, but we can't use those services unless we get all the MA exemptions and get approved for TEFRA. It's all very confusing and backwards.

We've also just learned of two different grants. Again, IF we are approved, IF the exceptions go through, and IF there's enough dollars left in the state/county budget, we MIGHT be approved for a grant.

This is HUGE because those grant dollars can be used for adaptive equipment, respite, or home safety items. Home safety items like a privacy fence, home security system, or a GPS bracelet that she isn't able to remove.

if/then/maybe/might.....all this COULD work out. In the meantime, please say some prayers that we're on the road to getting some help keeping our sweet angel safe!

It's a Beautiful World

This has been, hands down, one of the best weeks my girl and I have had in a while. Funny, because last week was one of the worst I can remember. You just never know which Elsie you're gonna get. This week, my sweet girl is back. Thank God for routine.

I have to remember, her "bad behavior" isn't bad behavior. It's frustration, stress and exhaustion bundled up into a nonverbal little almost three year old body. She's not able to say - Mom, we're out of our routine, we're missing appointments because we're taking turns being sick, the holidays are happening and my oh so crucial routine is out of whack and it's messing me up.  It's stressing me out. How else is she supposed to let me know? Her actions are her only way of expressing herself. I have to remember that.

Much too often, I try to force her into my world. 

Hurrry up, honey, it's just going to be a quick trip

Elsie, please keep your hands to yourself. That might break.

That floor is dirty, get up please.

Yes, that is pretty but we have to go now

Don't lick that!!

This week it finally registered. I have to stop forcing her into a world she doesn't want to be in. This week, I instead joined hers. 

Two "quick" errands = 5 hours. But we did it. Without incident.

The first was a grocery store. Through trial and lots of error, I've finally found one grocery store she can handle.

We get to the display of babies, her favorite part of this trip. She knows at least one is coming home with us. She unloads duplicates of all her favorites, and lines them in perfect little rows. This time, I don't rush her along. Rather, I sit down and help her. We play. This one's an elephant. Wow, you have four kitties! One, two, three, four. I hear "OO OO!" Yes! You're right! A monkey!! 

We're having fun. We're taking up half the aisle of the grocery store, sitting on the dirty floor playing with babies that aren't ours. And we're having fun. And I don't even care. I don't notice any ugly looks or huffs or comments, because Elsie's let me into her world. And in her world, those don't exist. When she decides she's finished, up we go and continue our shopping.

A similar story plays out when we get to the display of cars. "car car car car car car." Hey, look a police car. Oohhh, a mail truck - thats what the box man drives. Yep, thats a bus! ( as she's signing bus! amazing!) Neato! A tractor! That's what the farmers drive.

In the middle of our playing, a man came up and complimented her. From him, it meant double. He was the leader of a group of special needs adults volunteering at the store. He told me that she'd made their day, and they couldn't stop talking about her and how cute and smiley she was. We'd encountered the group a few times during this trip, and he said each time they would just light up and couldn't stop talking about how she's so precious and full of joy. 

The best part of our day was the next stop. A similar scene, yet again, at another store. All I need is a phone charger. We're there for an hour. Elsie's world knows no time but her own. Amongst other distractions, she found a Frozen microphone that sings Let it Go. She sings "let go let go let go," throughout the entire store, in full performer mode. Arms in the air, holding hte microphone high, singing in her best Princess Elsa voice. I'm dying to get a good video. It's the sweetest thing I've ever seen. She is such a performer. 

 

All this in just one day. 

How many of these precious, beautiful moments have I missed out on?

In rushing her from place to place, I'm not allowing her to be her. These sweet, hilarious moments aren't happening because I'm not allowing them. All I'm doing is stressing her out. 

I get it now. 

Hurry, rush, stress, appointments, schedules

Why would she want to live in my world when hers is so much better? 

Her world is carefree, and simple, and happy. In all the things I've taught her, she could teach me a thing or two. Enjoyment in all the simple things. The magic of a train roaring by, the beauty of watching the birds, the fun in being yourself and not caring, or even noticing, what others think of it. 

I can just imagine her sweet little voice: Slow down, Mommy. Life is so beautiful and fun, you just need to slow down so you can see it. 

Stop worrying. Stop hurrying. Slow down and live in the moment. 

I teach her as much as I possibly can. We have a teacher that teaches me how to teach her. Yet, this little girl teaches me every day. It reminds me of a verse my Mom had hanging in our bathroom. Perhaps there is a reason I saw it every day for almost 18 years. 

Touch us gently, time

We've not proud nor soaring wings

Our ambition, our content

lies in simple things

That pretty much sums up my baby girl.

In her almost three years, she has it all figured out. She didn't like our world so she's created her own. If you're willing to join her, she'll show you how wonderful it is. I've seen it, and trust me - it's much better there. :)