Monday, November 16, 2015

Jack Daniels & Jesus

Girlfriends, caffeine, yoga, whiskey sours, and a whole lotta Jesus...I made it.

Also, my husband. But, you know. While I'm busy being crazy, somebody's gotta pay the bills.

I've been fortunate in this journey in that I've found so many kindred spirits in my girlfriends. I'm beyond grateful for them, especially my special needs Mommy friends. The women who are new to the game, the seasoned pros who are a few life stages ahead of me, those who offer a coffee and a listening ear, those who provide a soulful hug and an "I get it." And that alone can calm you down, because you know the DO get it. In one way of another, I have a lot of amazing women helping me raise my daughter.

All of the seasoned pros have offered the same advice: It will get better. I know it doesn't feel that way right now, but it will. Trust me. Stop worrying about everything and just survive. One day, you'll have your life back. For now, just do what you gotta do to get through the day. Just survive.

Approximately one second after E's diagnosis. Life turned into complete chaos. It was already chaos, but it became complete chaos x ten million. All the expected reasons: therapy, waitlists, testing, more testing, waitlist for the test for testing, IEPs, special preschool classes, getting kicked out of daycare, why can't I find a babysitter that can handle her? Why is my "affordable healthcare" so unaffordable? What the hell am I supposed to do with this tiny human? She's out of control, bouncing off the walls, and only seeks comfort via me. Only Mommy. Me! Why me? I have no idea what I'm doing. Help me out here, kid. I'm freaking out, too! Not a lot of Moms like to talk about the crappy stuff. The emotional toll it takes on Mommy. Me included. But you know what? I made it. Just survive.

“Just survive” isn't quite as easy as it sounds. What it really means is: keep your kid alive, do the work, do the hard stuff, pour every ounce of your soul into your child, drink an unhealthy amount of coffee and try to sneak a snack when she's not looking. While "just surviving," you somehow have to find a spare second to process all of your own crazy emotions. 

For me, and most others, there is a long process of working through everything that was supposed to be. Anger, resentment, excruciating pain, tears and grief for not only the life my child was "supposed to have," but the life I've always dreamed of. The life I signed up for. "My plan."


I've always wanted to be a stay at home Mom. I am. But, I was supposed to be a super legit stay at home Mom. Like, the kind that personalizes goodie bags for every birthday party attendee. The one whose house looks like a Country Living magazine cover. Who never looks frazzled, haggard, sweaty and out of breath. Who makes it look so easy and oh, I don't know how you do it! A trophy wife. Like, a super legit rich trophy wife whose "real problems" are nothing other than oh my goodness. SO I went to the Nordie's to return something, and the line was so long. I had to wait for like, twenty minutes. And can you believe it? They couldn't even scan the receipt so they gave me store credit instead. Ugh. Poor me, I guess I'll just have to buy myself something shiny. Sighhh - said in Scarlett O'Hara-like dramatic exasperation. <eyeroll> I'm being overly dramatic. .

I was supposed to get up, tow my baby to the daycare at the gym where she happily plays with others. Then we'd hit up lunch with some girlfriends while she sweetly naps in her stroller. Then what? We’ll hit up Whole Foods bc Daddy will be home soon and we eat strictly paleo, organic, fair-trade foods. 

Then he'd walk in the house to a completely ready, on the plate, thoughtfully & perfectly prepared dinner fit for a King. To be eaten only after he sits down for a few minutes so I can fetch a cold craft beer in a frosty mug. Why a craft beer? Bc we're f'king fancy, that's why. 

Then, we’d spend the rest of the evening playing, giggling & gleefully reading books, cuddling and resting up for tomorrow. We have a busy day - you know, story time at the library, then a play date at the park, then we'll take a long cuddle nap and spend the rest of the day playing. Life was going to be such a dream. My plan. What I signed up for.  

I've done it all. All the hard stuff. I've cried in department stores after running into a Mom/daughter combo having a meaningless conversation about shoes. I cried again after I bumped into them and learned our daughters are the exact same age. And mine couldn't even say her name. 

I've cried over failed playdates and grocery store meltdowns. I've cried over rushing out of restaurants before getting our food. 

I've cried tears of anger and frustration - for the both of us. 

I've cried over our family going totally "Autism on a plane," when for a very short time my husband wasn't sure whether he wanted a divorce or a burial plot.

I've cried tears of worry she'll get bullied in Kindergarten and will I have to home school? Will she have to live in my basement when she's grown? Will she meet a man as amazing as her Daddy, have children and a live fully functioning life? 

I've cried tears of anger because she's out of control and I haven't slept in weeks months. I’ve called my husband at work, hysterically crying demanding he come home immediately bc I just can't do it today

I've had days of tears and praying that we can all just survive ’til bedtime.  Somewhere down that path, I realized I was tired of feeling sorry for myself. I was tired of grieving over "my plan," and I needed just let it go. I realized that worrying about Kindergarten isn't going to help me through today

I puked in hot yoga and realized - not only is my mind suffering - my body is suffering. I’d literally cried and worried myself sick to the point of severe stomach ulcers & an ER trip for my 30th birthday. Stress & worry - it doesn't help

I've realized that all I have is this moment, this very moment I'm living right now - so I may as well enjoy it the best I can.

My plan - God laughed. He didn't give me what I was expecting, or what I signed up for. He gave me what I needed. He's working on our team, even when it doesn't feel like it. I have to trust that His plan is way better than mine. It is. - a whole lotta Jesus

When that seems to be failing, I can seek solace in coffee dates & life chats. - girlfriends

When I feel like I'm epically messing up this whole "Mom" thing, I remember: I'm doing my best. That's all I can do. "I am enough." - yoga

If all else fails, a strong whiskey sour will help me get to sleep at night. - Jack Daniels

If I had a few too many, and I'm having a hard time waking up: - Coffee

Repeat.

Let go. Let it be. This moment is the only one I have. Stop worrying about the “what-if's" and enjoy her at every chance.

Focus on the good.

You haven’t let me brush your hair in a week…but you're wearing clothes! AND you ate food! Actual food, not milk. It was Cheetos, but hey! Winning!

I still cry. A lot. Something about squeezing out a tiny human made me have feelings and emotions and it's weird. 

These days, it's happy tears because she used a 5 word utterance. She can communicate now, and we can understand most of it. She can say want she wants, needs, or feels. What else does she need to say? She's not non-verbal anymore.

 She took an intelligence-type test with pictures, & starting getting the questions wrong…somewhere around the first grade level. She was 2 at the time. 
I cry tears of joy because she's so so very smart. She remembers stuff from two summers ago. From a year and a half ago. Her memory is unreal.

I cried in Kohl's when she demanded "Hessa shoes!!" (Elsa) They were ridiculous, impractical with a small high-heel, made of that cheap hard plastic that makes feet smell God awful…but, we talked! About shoes! A year and a half ago I left a department store in tears over her in-ability to talk to me about stupid stuff like shoes. 

And you know what? 

I bought her those ridiculous smelly Elsa shoes and she wears them every damn day. I would've bought her ten pairs if she wanted. And they're not stupid. Those shoes are everything for no reason other than she was able to ask me for them.

She's the sweetest little slice of heaven, and when she's not - she does that pretty hard-core, too. She is strong willed and does things her way, and that's a good thing.

I cry from laughing so hard over the funny stuff, like when she totally raged at the company picnic and it.was.epic.

We still laugh so hard we cry over the time she knocked out her Daddy's front tooth. If you're looking for a quick yet hysterical way to drop like, 3 grand, just call my kid.

When her friends are over, she tells them to wait…so she can go inside to the snack drawer in the fridge and serve everyone juice boxes and Go-Gurt. 

She's so sweet and caring it brings tears to my eyes. We say it to each other all the time: she's so amazing.

She's made me a better person, and if you know her well she's done the same to you, too. It doesn't matter what kind of day you're having, she can make you smile.

Somewhere down this journey, it hit me. I made it. I actually started enjoying this crazy life. It took me a year and a half, but I finally found my groove. 

My husband told me I should take "what I signed up for," write it down on a piece of paper and burn it. I mentally did that & it was beautiful. I'm finally enjoying being a stay at home Mom. As is. Sleepless nights, chaos and craziness and all. 

A few weeks ago it hit me in the face like a ton of bricks and I almost cried. I'm doing it! Look at me! 

What is happening?! 

I'm lunching with girlfriends, and my child is on the playground happily playing with her friends. 

Holy crap. 

We made it.






Thursday, October 29, 2015

How Donald Trump Lost My Vote in 3 Minutes


Let me begin by saying, I am a Mom. I am an Autism Mom. And right now, honestly, that’s pretty much all I am.

I pour every particle of my soul into raising my tiny human to reach her fullest potential.

But, you know what? I'm a lot of other things, too. I am a woman. I am a woman of God. I'm educated. I'm smart. I'm well spoken when I need to be. I care about people. And children. And stray puppies. You know what else?

I have a voice.

I'm furious. I'm so mad I'm having a hard time focusing in on what I'd like to type.

The whole reason I started this blog-ish thing was because I have a lot to say. I want to be heard. It if goes somewhere and a lot of people see it, great. If it's only seen by a handful of relatives and high school acquaintances, that’s great too.

I’m only one vote.

Before the last presidential debate, I'll be honest: HUGE Trump fan. I don't care that he's a bit classless at times, or says distasteful things about women. I couldn’t care less whether or not her hurt Megyn Kelly’s feelings. She’s beautiful and smart and talented and she’s also a big girl & I’m pretty sure she can handle herself, ok? I don’t particularly feel strongly about what he says about Rosie O'Donnell. I find it a bit entertaining, really. I like it. He's harsh and brazen and brutally honest and doesn't care if people don't like it. I like that. I'm into that.

The Unites States government, by many accounts, is a business. Our economy is struggling as are many of our people. Trump, by all accounts, is an intelligent business man. A genius businessman. He's created successful companies and earned a lot of money. Great! He can fix our economy. Sweet. Sign me up! Where can I get a Trump t-shirt? Does he know everything about war and struggle and what to do in military situations? No. But that’s okay.

I'll listen to the experts, he says.

Well, no he won’t.

I'm mad.

If you’ve been living in a cave for the last 25 years and have no idea why I'm upset, please use your brain. Get on Google, type in: Donald Trump autism debate. Read some articles and come to your own educated conclusion.
Or just go to the end of this and look at the related articles, I already did the work for you. I even made it fair and balanced by including Fox AND CNN. You’re welcome. J

Donald Trump had a platform. A big one. And instead of using it for good and win people over, people like me - he put his foot in his mouth. He put it in his mouth so far it came out the other end. He was asked a question he wasn't ready for and he messed up. If he doesn't have PR people, he needs them. If he does, he needs to fire them and get new ones.

Here are a few really great things he could've said:
- You know what, Dr Carson just proved me wrong. Gracefully, I’d like to admit I should better educate myself on this issue. I’ll do that and then get back to you.
- The bigger issue at hand is the fact that many Autistic children don't get the treatment they need and deserve, because our system is fundamentally messed up.
- Many children are left behind because schools are forced to conform to a system that just doesn't work for all of them. Common core is stupid. So is No Child Left Behind, if I'm being honest. Many children are, in fact, left behind.
- Educational, mental health and disability issues are something this country needs to put some elbow grease into. In fact, so are our children. You know -the future of the world.
Food insecurity affects *16.2 million children. OUR children. Children living in the United States of America. The future leaders of the free world. How is one supposed to become a leader of the world with no food to eat?
In my state alone, more than *half a million children don’t know where their next meal is coming from.
Children at my daughter's school. Children at your kids' schools. Why are we handing out so much "free money" when our own children are starving? I plan on fixing that.

 

Any of those answers would’ve worked for me.

 

Children. Everything sweet, innocent, pure and mushy-gushy in the world. OUR children.
Instead of saying something epically awesome and meaningful, he put his foot in his mouth. Instead of gracefully admitting his defeat, he continued to shove his foot down his throat so far it came out the other end.

Dr Ben Carson is a world renowned pediatric neurosurgeon. In case you’re an idiot, please let me simplify this for you.

World renowned = super important

Pediatric = babies, kids

Neurosurgeon = BRAIN SURGEON

He's spent a large majority of his life studying, researching and by every account becoming an EXPERT on the brain.


In case you need a tiny bit more help:


Ben Carson = super important smart brain guy who knows exactly what the f*k he’s talking about.

He’s literally cut apart kids’ brains, and put them back together better than the way he found them.



*I’m pretty confident he gives a shit about our babies, btw


But wait! Here you are, Mr. Trump. Mr. I'm smarter than him continuing to try and prove him wrong. Wait, what? What happened to Ill listen to the experts!


"You're an okay doctor."

If you're not going to take advice from a brain expert on matters of the brain…why would you take advice from anyone else?
From military experts?
From struggling families?
From those without jobs?
From those with disabilities fighting for the rights they inherently deserve as citizens of this country?


From women like me who are just a Mom. With just one vote?  


life, liberty and the pursuit of happiness


You may be a genius businessman who can fix our economy. You may, potentially, be a great President of the United States. You may be on TV, on a platform, in a suit that costs more than my house but you're an idiot.

 
Dr Carson is too classy and respectful and Godly to say that out loud and in public. I’m not. You’re an idiot, Trump.

You had an opportunity to do something awesome and meaningful and you blew it. And for that reason, I don't care what you say tonight. You already lost my vote. 

 

Disclaimer: You may not agree with me. That’s ok. Please use your own brain, do you own research, and “make the correct decision after getting the real facts.”

 

Related Articles:





http://www.salon.com/topic/autism/




https://www.donaldjtrump.com/


*Where my fancy numbers came from:


**another disclaimer: I know the background is messed up. I don't care. My daughter is asking me for "Mommy snugs," so I'm gonna go do that.

 

Monday, April 20, 2015

The Spoken Word & a Huge Victory!!

There is a poem hanging on my fridge. It was sent to me by one of my dearest friends, at the exact moment I really needed it. Parts of it are highlighted. I read it every single day. On tough days - more than once.

The Special Mother, by Erma Bombeck


 Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.


This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

 
 


"She will never take for granted the spoken word."
Ahhh...the spoken word.

The spoken word is probably one of the most difficult part of this Autism roller coaster we're on. What I would give to have a conversation with her. About something. anything. something stupid like which shoes are her favorite or why she likes pizza so much lately. anything.

Parenting a non-verbal child is a painful frustration that can't quite be put into words.

Thank God for sign language. Ben and I have both become pretty proficient, and Elsie catches on incredibly fast. Sign language and speech therapy have made our lives a little simpler, and, almost a year later, between what few words she has + sign language she can usually relay the message of what she wants/needs. There are significantly fewer tantrums because now she can tell us she wants the kitty bot bot instead of the bee bot bot, or wants juice instead of milk, etc....all things that created unbearable over the top meltdowns. Not that they don't happen, just far less often these days.

But she says words, how is she non-verbal?
...sigh.....a common question. Non-verbal doesn't mean can't speak or say words. It means there is a significant delay in ability, which effects the ability to communicate effectively. <insert sign language>
"Momma, Daddy, kitty, bot bot, bites.." = YES
Every day three-year-old conversations about shoes and pizza=NO

She's developed her own language, which Ben and I usually understand perfectly. You wouldn't.

"ah-bye a ney ney ney." = Puppy, sit down right here.

We speak Elsie.

The good news is that in some cases there is improvement over time, with a lot of hard work. Lucky for us, she got her Daddy's work ethic. :) She is the hardest working toddler I know.

 "She will never consider a step ordinary."
Here's the thing about parenting a child with special needs. Everything is a big deal. EVERYTHING. Every new milestone, every new word, every new crisis-averted, every new learned task is a big flipping deal. Everything is a huge accomplishment because it didn't come as easily as it did for others the same age. It required lots of practice, trial and error, patience, and hard work. And usually a little bit of Momma crying. It's HUGE.

Your kid sat quietly in the buggy for a 20 minute trip through Wal-Mart? So what. BFD.
My kid did it? We took pictures, almost cried, bought her a Barbie and two yellow fishies. This took practice. Not kidding, we practice grocery shopping. Small quick trips to build her tolerance. Some are successful, some end in lots of sweat and everyone crying. It's a HUGE DEAL. She did it!
Evidence: Even with a smile and NO tears!
My point in all the above: everything she does is a miracle in itself. She's a miracle. As a point of reference, I tried forever to find a video we took this time last year. We took it so we could show her therapists during the diagnosis process. I can't find it. So, imagine: Elsie lying in our bed, pointing at the tv and crying in frustration. She wants to watch a particular movie but can't tell us. She's only got a few words in her toolbox, Pocahontas and Mulan aren't among them. All she can do is point, grunt and cry and cry until we figure it out, distract her, or she gives up. (that can take a reeeeeally long time)

8 months of intense therapy later, she's moved mountains as far as her speech ability. She's made so much progress it's unreal.

Before I get to the big big news, here's some recent videos that show how far she's come. Remember, our reference point, last year: pointing, grunting, and anger. HOLY WOW! She's so amazing these videos are the best!

<<get ready for video overload, if you don't want to watch them all...skip to the end :)>>

So much progress!!!

learning baby signing time in Nov:
 
singing twinkle twinkle little star - Jan
 
 
making a video for Daddy while he's out of town working - Feb
 
 
happy birthday solo
 
 

 

 So now that you have an idea of how much progress she's made this year......drumroll please....she SAID HER NAME!!! The sweetest little voice said the one word we've been waiting oh so very long to hear...Shesshie :) She's over the moon proud of herself and so are we. She's resorted to speaking in the third person all.the.time. So precious! Shesshie potty...Shesshie bite bites. I've waited for so long, and shed many tears, and said lots of prayers waiting for this day. HUGE victory for our little. When your kid says their name, it's probably not that big of a deal. Us? We cried, called almost everyone we knew so she'd say it for them, and took a million videos.
 
We went into therapy last week just like normal, except there was a new secretary that didn't know us. She asked Elsie her name, like a million other people before, and I prepared to answer for hear...just like always. But Elsie looked at her, pointed to herself and loud and proud "Shesshie!"
 
Y'all..I almost fell over and died. I can't believe it. I was able to take this little gem the same day at school:
 
 
 
And she was very excited to tell Daddy when he got home...Gogurt and all
 
And she loves saying hello and goodnight to the sun and moon :)



Isn't she such a perfect little angel? And how sweet is her voice? I can't believe how far she's come in such a short time. I know for sure, all her therapists and teachers are angels in disguise.

"She is to be envied."
I am to be envied. I get to laugh with her on silly days. I get to cry along side her on hard days, and share in her joys and victories on the good days. But most importantly, I get to witness the small miracle that is my baby girl EVERY day.

I am to be envied, indeed.


-LJ