This is who I've become

The world of autism is so vast... and confusing... and overwhelming.
I spent the afternoon making phone calls, because I'm still trying to come up with a summer therapy plan for Waylon, and trying to figure out how to pay for it.
Insurance companies, in a word, suck. Sorry to be so harsh, but it's true. You know it is.
Well I was needing one specific bit of information this afternoon- a simple request that I knew would take for-ev-er if I tried calling the insurance company. I knew just the person who could help me. Only problem was, I hadn't seen/talked to her in ages. Nothing a little facebook stalking personal investigation couldn't handle. Seriously though, I facebook stalked her.
I found her, and she answered my question in a heartbeat. She didn't even seem that freaked out that some random woman from her past could figure out what company she worked for and her extension's phone number. (Ok I'm really sounding like a creeper now). She was really glad to be able to help out, and she even let me have her cell # in case I needed help again and didn't want to re-stalk her. (She must not have been too scared).
Anyways, my point in all of this is: when I got off the phone with her, I felt as though "it takes a village" couldn't be more true. We have met so many people on this journey with hearts of gold that we wouldn't be privileged to know, if it weren't for Waylon. I've said many good-byes and given many hugs to therapists, teachers, and paras through the years that have always been followed with, "If you or Waylon ever need anything, let me know." Maybe it's one of those cliché phrases, I don't know. But I like to think that these people are offering their support because Waylon is freaking adorable and everyone who gets the opportunity to work with him falls in love. And since these people have made it their career, they are usually fountains of knowledge when it comes to all things autism. If you have a kid with autism, these are people that you want to have on your side. We are so blessed to have each and every one of them in our village.
So I don't care if it's a cliché or not. If you are one of those people, please know that I haven't forgotten your offer. However, if you did not give me your business card or your number scribbled on a cocktail napkin, when the time arises that I need your help, I will probably facebook stalk you and your company and hunt you down. It's what I do.
This is who I've become.


PS- Megan. Thanks for your help today. Seriously, you are awesome, and I am so glad I found you. (Wait... does that sound creepy again?)

April 2nd Thoughts

 

Well our 5th Autism Awareness Day since Waylon's diagnosis has now come to a close. I hope he can feel the love that I know was spread for him yesterday. My heart swelled a little more each time I saw a profile pic turn blue. Amazing. Just amazing. And our family "lit it up blue" proudly. Including our trusty minivan, who, under the circumstances, did the best she could.
 

I mentioned on Facebook on the eve of Autism Awareness Day about the hellacious weekend we had, that had given me writer's block and kept me from writing my official Autism Awareness Day post. Our water line burst and we had to have it repaired, I got a speeding ticket during a long road trip on Sunday, and Travis hit a deer in the minivan on the way home from soccer Monday night.

The truth is, I was having a hard time writing about April 2nd anyways- after 5 years, I still don't really know how to feel about it. It's really not a day I want to have to celebrate, for us or any other family out there. So although I don't have some mind-blowing, philosophical post for you to read about what this day means for us, I do have a few random thoughts.

*You know, there are adults living with autism out there who say, if there were a cure, they wouldn't take it. They wouldn't change having autism because that's who they are, and they use April 2nd as a day to celebrate being who they are. I don't mean to undermine their feelings, and I really hope that Waylon can feel that way too, someday... But it's still really hard for me to understand.
Because I think autism sucks.
Waylon, God bless his mighty little soul, walks around everyday in a body he can't control, hearing sounds and not being able to respond, feeling pain and not being able to tell anyone... This is something he has to live with that I wish no child would ever have to experience. And I think he deserves this outpouring of support everyday of the year, not just April 2nd.
He is my hero.

*You may have noticed I have been asking for your support every Spring, to call and email legislators to get an insurance mandate for autism passed. Every year, it has fallen short. But this was the year. It passed yesterday in the Senate, and is headed to Governor Brownback's desk. Finally, after years of paying ridiculous amounts for therapy, our insurance will be required to cover a portion. Not only is this important for Waylon, but for thousands of other kids in Kansas who have never received any therapy because of the ridiculous costs. It's not a perfect bill- the coverage still falls short of Missouri and other states' insurance mandates. But hey, it's a start. Hopefully it makes a difference for the future of these 1 in 68 kids. Best Autism Awareness Day gift ever.

*Travis put Waylon in his car yesterday to go to his school, and as soon as he got back inside, I said, "Hey, what shirt did he wear today?" When Travis told me which one and asked why I cared, I reminded him that it was Autism Awareness Day, and he was supposed to wear blue. Trav just smirked and said, "Are you serious? He doesn't have to wear blue, he lives it."
So last night, in honor of Autism Awareness Day, I had a glass of wine. Because we live it.

*My original post was going to be 30 things you could do this month- Autism Awareness Month- in support of people living with autism. But this is as far as I got, so here goes:
1. Be a friend to someone living with special needs.
2. Thank God today for the gift of communication.
3. Get down on the floor and spend 15 minutes engaged in conversation and play with each of your kids- harder than you think.
4. Spend 30 minutes of your day without words.

Call it a challenge, call it some random thoughts from a crazy hormonal woman, whatever.
 

Lucy's first selfie, wearing blue for her
 big brother.

 

Flooded.

Ahhhhh... Where to start.
Well let's begin with the reasons for my emotional turmoil:
1. It was the end of Spring break week. He had been walking on my counters and peeing on my floor and eating my nutella with hint of lime tostitos for a whole week.
2. My biggest baby was gone for the week and this momma was missing him something fierce.
3. I carry a (sweet adorable precious) baby around all day and provide her sustenance every three hours all day and all night, and thus can't shake the bags under my eyes and the need to hear the coffee pot continuously percolating.
 4. I've still got that postpartum funk going on so I spend most nights plotting ways to murder my snoring husband. (Just kidding, kind of. It's just a funk, but postpartum depression is serious. Please don't murder your husband. Get help.)

So anyways, we had spent the final Saturday of Spring Break veg'ing out on the sofa, watching movies, eating corn dogs for lunch, and snacking on those delicious oatmeal sandwich Little Debbie's the rest of the day... every kids dream day, right? Who am I kidding, this is my dream day.
Well Waylon has a bit of an obsession with toilet paper, and he tends to clog the toilet with an entire roll, oh like, every other day. So when Rose came in and casually mentioned that the master bathroom toilet was clogged, Travis and I, in our exhausted stupor, took note- guess we'll have to use the kids' bathroom until one of us gets in there and unclogs it. No biggie. Right?
Wellllllll round about 4:30 in the afternoon, we decide we should probably get up and around- maybe head to town for church- Travis comes back from our bathroom and says, "I don't think we're going to church tonight... the bathroom's flooded."
I started to say "Oh dear, better check the basement" but he read my mind and opened the basement door mid-sentence, whence I was drowned out by the sound of Niagra Falls coming out of my basement ceiling. Real life. True story. Ain't making this up.
I suppose that is the 5th reason I was in emotional turmoil.
Travis started crying and I called my Mom.

So by about midnight, after hours of shop vac'ing the bathroom and closet carpets and basement floor, squeegee'ing standing water, renting an industrial sized dehumidifier, setting up fans, moving the basement sofas and rugs and totes and bags of clothes and soaked carseats.... you get the point..... anyways, around midnight, I started sifting through a box of photos I found that had gotten wet and laying them out to dry. (Here's a good place for me to advise you all to not store your photos in shoe boxes.) This box happened to be from about 2007 and 2008- Waylon's first year and a half. So I'm looking at photos of him opening his first Christmas presents and hunting for Easter eggs. He's reading a book on my lap and playing with his brother; cheesing for the camera and soaking up the interaction like any typical toddler. For pete's sake he's even wearing hats. I look in these pictures and I see his personality. And I remembered back then, when I felt like I knew the boy behind those eyes. Back when I still had Waylon.
And that's when I really felt flooded.
So I guess that's reason #6 for my emotional turmoil.
And the straw that broke the camel's back.

Can I be honest here? It really pisses me off.
What are those "stages of grief" I learned in nursing school?
Denial, anger, bargaining, depression, acceptance.
Anger.
Anger.
Anger.
I am really angry. Angry that I had a boy. A beautiful boy. For such a short period of time. And I had no clue. I didn't cherish it. I didn't realize that those piercing blue eyes staring at me with such love would soon be precious to find. No clue that that would be his last Easter egg hunt for years. No clue that it would take him six more Christmases to open presents with that much gusto again. How should I have known that he would soon "come down with something" that would keep him from being able to do something as simple as putting on a hat?
I had no clue.

And you know what else pisses me off?
That no one can tell me why.
The CDC is having a press conference today to announce their latest estimate of the rate of kids being diagnosed with autism. Again, we're making a big production of the prevalence but not getting to the root of the problem.
Please, will someone just tell me where my son went?

Yeah, yeah, yeah. I can hear you optimists out there. There's a little optimistic angel sitting on my other shoulder, too.
He's a beautiful boy. He still has those beautiful big blue eyes. He's a wonderful, unique person who has made our lives so much more rich and fulfilled than I could have imagined.
I'm aware of that.
But sometimes, I just have to grieve a little. For what was. It's ok.
Because it's that anger that keeps me going. Going to IEP meetings, and reading food labels, calling insurance companies and service providers, state representatives and senators, and keeps me sane while scraping the hint of lime tostitos crumbs out of my nutella.
And it keeps me praying that someday that Waylon will return, and he'll rip open his Christmas presents and say, "Cool, that's what I've always wanted, Mom."
And you know what? I don't care if he ever wears a hat again. But just to hear those words-
that's all I've ever wanted.

All things new and wonderful

My oh my. I'm on cloud 9.
What an eventful month it's been around here.

Let's see, I think the last time we left off, I was feeling kind of like this:

 

But then something wonderful happened, this:

She is adorable and perfect and wonderful and amazing and lovely and sweet and adorable and perfect and wonderful and...

 

I won't drone on about her birth story (even though it was beautiful and perfect and I could tell it a thousand times), but I will tell you I was just plum tickled that everything went just as I had hoped. I was so worried that I would need to be induced. In usual Lindy-fashion, I freaked the hell out. For no reason.
And then she came. Just perfectly. All on her own.
(Well, I did eat Mexican the night before- the taco salad with shredded beef, in case any of you overdue pregnant mommas out there are wondering).

And as evidenced by the outpouring of love and support and texts and phone calls and facebook messages and likes and meals showing up at our house like Ed McMahon and the Publisher's Clearing House... I'd say she is one pretty loved little gal.
I really will be sending out the good old fashioned paper thank you cards to express my dearest thanks, but I'm pretty sure it's going to be a bit before all that gets done. So in the mean time, Thank you all.



I totally took this screenshot to put in her baby book, so I can whip it out someday when she's a teenager and says, "Nobody likes me!"

You know, my mom always told me that when she had another child her love was never divided, but instead it multiplied. Funny how each milestone in your life makes you value your mother's wisdom even more. My mom is so freakin' smart.
I am so in love.



With all of them.

So, we have set out on this fascinating new adventure. A family of six.

Of course, with all new family adventures, it is the mother's job to freak the hell out. For no reason. Right?
So I watch the way she responds to our voices and I watch her eyes as they follow the light coming in the window. I google "How to bond with your newborn" and I sit and talk with her in my willy nilly little baby voice for hours on end.

You see, it's just me and her everyday while the big kids are at school. We're becoming old pals, Lucy and me. I know everything about her. And she is learning everything about me.
So we talk, we sing, we cuddle, we coo. Travis says I'm just creating a monster. He's probably right.

I know I'm probably going overboard- I'm just so scared of being a refrigerator mother.
I will hold and coddle her all the days of my life, if there's even just a one-in-a-million chance it will keep her from getting autism.

I know, I know, it's just me being paranoid. It's just me freaking the hell out. For no reason, right?
I hope so.

Lucy and I sat down and had a good, long talk about how to crap in the toilet instead of her diaper, and she was like, "Huh?"

So, she is one month old today. And, like all of you perfect little pinteresting first time moms out there, Lucy and I are going to have a little "I'm one month old" photo sesh this afternoon.
But I am pretty freaking proud of myself for even remembering she turns one month old today. Let alone the picture thing. So don't get used to this.

Oh, and as you may have noticed on facebook or youtube, other amazing things have happened this month. And I'll be back to blog about them soon.
But now I have a baby to coddle and love and take pictures of. So I'll see you again soon, k?
 

 

A few things worth mentioning

Yeah, yeah, I know it's been a while. You see I have this parasite adorable blessing sucking life from growing gracefully within me and I have a hard time sitting down to type without zonking out and waking up with drool in my keyboard.
But regardless of my current state, I thought I'd jump out of my blogging hiatus with a few things worth mentioning:

Numero Uno: He lost a tooth.
O.M.G.G. (ohmygoodnessgrief) I know he's seven and all, but he's my baby. I rock him to sleep and cradle him when he is upset. He is not old enough to be losing teeth. But actually he is. And that makes me sad.

The loose tooth discovery went down like this-

 

So for supper that night, mom-of-the-year made corn-on-the-cob. Oops.

Reason #252 that non-verbal kids with autism rock. They can't complain. Even when their mom makes food that they literally can't eat. And even when their mom says, "Wait, let me get the camera" instead of helping the poor child out with his corn.


And so the removal of said tooth went down like this-

 

So my hands were a little full trying to help pin him down in the dentist chair and I didn't get to snap any pics, but this is actually a rather accurate depiction. When he realized that his spit was red he was so excited he could hardly contain himself. It was like those little art kits that have splatter paint, only his paint only came in red and was a serious biohazard for all of the employees/children/poor innocent bystanders in the pediatric dentist's office. I was covered in red splatter paint, as was the rest of southern Johnson County, within a few short minutes.

 

Numero dos: As previously mentioned, there is a beautiful little lifeform growing inside me that isn't coming out.

Ok so, today is my due date. It's not like I've been pregnant forever, (just kidding I actually have). But it's time that this baby makes an appearance.

I've drank pickle juice and castor oil, eaten Mexican food and coated myself in essential oils. I've rubbed the little spots on my ankles that the girls at work "swear made them go right into labor". I take the stairs at work. I walk, walk, walk. I pray.

And yes, I did the things that you are thinking of that I can't type or else I will giggle and blush.

And it's not working.

I know I won't be pregnant forever- (this baby has to come out sometime, right?) but I really don't want to be induced. I just want to have a good old fashioned labor and delivery, where a adorable/handsome girl/boy pops out with big beautiful eyes and a perfectly healthy brain.

Is that so much to ask?

So I thought it might be worth mentioning that tomorrow, when I come waddling into 3rd and 4th grade biddy basketball, with my three adorable little offspring in tow (one, no doubt, bouncing around the gym in mismatched clothes and a side pony and one, no doubt, banging on the water fountain to watch the water splash), you should not be offended when you ask me when I'm due and I look at you like this:



You're welcome for the warning.

And Numero tres: Someone out there thinks I'm funny or something.
I thought it might be worth mentioning that I happen to be making my stardom debut next month as a stand-up comedian at the Mission Theatre. It's true. I'm scared spitless.
I don't think I'm actually funny, it's just that my kid craps all over the place and the story surrounding it is usually good for a laugh or two. And, BONUS- by the time February 28th rolls around, I will have TWO kids that crap all over the place. More bang for your buck!
So if you're up for a night of comedy for a good cause, come check it out. And bring your tomatoes.
You can get tickets here! http://www.brownpapertickets.com/event/549916

Reasons our speech path is better than yours

There are about a thousand reasons our speech path is better than yours. 

But this is one of them: 

The girl has been begging, pleading, bribing the boy to say her name spontaneously for over four years. (She started coming to our house to work with Waylon before he turned three, and has remained his primary speech pathologist through preschool, kindergarten, and now first grade. How lucky are we?)

She taught him to make noises- ("ba ba ba") before she worked for hours/days/weeks/months to get him to repeat "Daddy", and then "Mommy". She taught him to sign and eventually say "more", then "my turn", then "help me". Who am I kidding- she has worked tirelessly to teach the boy virtually every word he knows. 

And all of the obligatory Christmas ornaments and plates of brownies and you're-the-best-speech-path-ever thank you's don't hold a candle to the gift she got today.

Kudos, Miss Jennifer.

The most hormonal time of the year

Travis and I were sitting on the sofa the other night watching a movie, when Waylon crawled up between us, scooped up our hands, and interlocked each of his little fingers between ours. We sat there for a while in silence, before the flood gates opened and I let the nine month pregnant hormones take over.

You see, it's been a trend lately... this month especially.
Waylon, recognizing Santa for the first time.... tears.
Waylon, shouting "Hello, hello!" at the top of his lungs when Santa came into the other kids' school Christmas program... tears.
Waylon, actually interested in opening presents on Christmas morning... tears.
Waylon, turning seven today... major tears.

Travis has also learned to recognize these special moments, but I can usually see the dumbfounded deer-in-the-headlights look of, "Why are you crying again?" (He is smart enough to not say this out loud, of course.)

Well, usually I don't know why I'm crying either.

If my glass were half empty (which it's really not), they would be sad tears. That Waylon, at seven years old, an age when some kids are starting to question the truth about Santa, has just now learned who Santa even is.
If my glass were half full (which it usually is), I would be happy. They should be tears of joy that Waylon, at seven years old, is finally able to experience the Christmas season. But are they?

My glass is spilling over with I'm-about-to-have-a-baby hormones, and I don't know what kind of crazy mixed up tears these are.
I guess they are tears because Waylon, at seven years old, can't look me in the eye and say, "I love you, Mom" but he can climb up on the sofa and squeeze his little hand in mine and I can feel it.
I guess the tears could be because Waylon is the only seven year old in the audience at the school program standing on a chair yelling "Hello, hello!" like he's meeting the Big Man for the first time, and I wonder if he'll still believe when he's ten, or fifteen, or twenty.
I think I get emotional because for just a few moments on Christmas, when packages are flying and chaos is abound, our lives seem so... normal.

But today, he turns seven. And Trav sends me a text from work that says "Don't forget to focus a little extra attention on Waylon today."
I try to sing him "Happy Birthday" and he screams "STOP IT!" (One of his favorite phrases these days).
And there's the reminder that our lives are anything but normal.

I can't help it. I go through it every year, this anger and resentment that I feel when his birthday arrives and he officially falls another year behind.
And unfortunately, dwelling on the negative clouds the really awesome things that are happening right before my eyes... We had his IEP meeting this month and reviewed all of the amazing things he has learned this year. We catch him saying new words all the time. He is able to go places and do things we would have never attempted before. (We've almost conquered Wal-Mart!)

And then I remind myself of the gift I have been given- a seven-year-old who may never grow up. Who may still be yelling "Hello! Hello!" to Santa when he is fifteen. Who may still be climbing on the sofa to hold my hand when he is twenty. Who still may be ripping open a new race track on Christmas morning with sheer excitement at twenty-five.
How lucky am I?

New Years is coming, and although I need a stiff drink really bad, I also need to have a baby with a well developed, healthy brain. So I am going to raise an imaginary glass-half-full toast.
Here's to a year of progress. A year full of amazing things. The year that Waylon turned seven.
The year that Waylon met Santa.

We were blessed to be invited to pictures with Santa for children with special needs, sponsored by our awesome support group, the Autism Society of the Heartland. During our one-on-one time with Santa, Waylon was able to jingle his bells and climb all over him, while Santa patiently talked to Waylon about Christmas. When it was Caden and Rose Mary's turn, Santa pulled them in close and reminded them he had been watching what a great brother and sister they are for Waylon, and thanked them for all they do for Waylon all year long...
Tears.