Thursday, November 25, 2021

She's back!

 She’s back! 


I miss writing. 


I like to type. And there’s something so satisfying about the keyboard clicks as my fingers dance in synchrony across the keyboard. 


I miss the therapy of writing stuff down. 


I miss the vulnerability of sharing what’s on my heart and selfishly, I love the validation and instant gratitude of my friends telling me I’m doing something right. 


I know I am. 


And I’m a good writer. I went and got a whole degree in it and everything.


I know why I quit, but we’ll talk more about that later. 


Today, I want to update y’all on this unbelievable miracle of mine. 


This Thanksgiving, I am most thankful for this girl. 


Only my real OG blog readers and internet friends and true friends will already know this. But, when Elsie was diagnosed with Autism, the following few years were the most gut wrenching, traumatic, heart breaking, exhausting, and rewarding years of my life. 


I will never ever ever forget, the Psychiatrist that diagnosed her told us that Elsie would have a gift - a gift, almost savant like, that she was made for; and as her parents, it was our job to figure out what that was. Well, that was terrifying. To a fault, I’ve never backed down from a challenge, so here we are. 


To date, I think her gift is to be a bright light. 


She is a free spirit. 


She lives in the moment. 


She is genuinely loving, kind and giving. 


If you don’t have a water at cheer practice, she will buy you one and put in right smack on that charge account and I am here for it. She will spend too much time (and cash) stopping in Times Square making Daddy give money to the homeless population before the sensory overload causes a meltdown. 


She loves hard. 


But like my good friend, Kristi, says about her daughter, “knuck if you buck,” if you make her mad you’re gonna know. And she’ll love you through it. I wish you could meet this little girl, she and Elsie are two peas in a pod. 


She is obsessed with water. 


If you invite her over to swim, just know you’re gonna have to kick her out. There’s just something about the water that is therapeutic to her. 


She will light up any room she walks into. 


She’s unfairly beautiful. 


Most importantly, she is a miracle is every sense of the word. 


We were told her speech wouldn’t be caught up until she was 7 years old. 


I FOUND a miracle worker. 


Senn worked unparalleled skill and magic on my baby. As an added bonus, Elsie thought she was Pocahontas there for a little bit and that probably helped. I don’t think I ever told her that. 


Elsie’s sensory needs were so out of control, we didn’t even know what to do with her. 


I FOUND a miracle worker. 


Beth is truly passionate about her business and helping children reach their true potential. Elsie instantly took to her. Beth wasn’t even taking new cases but she saw something in Elsie and agreed to work with her. 


Elsie’s pharmacist mixed her sleep medicine wrong and she received 1000x the correct dose. 


She should be dead. 


I KNOW a miracle worker. 


I will never ever ever understand why my prayers have been answered instead of someone else’s. Me and the Big Guy made some deals that night and I’m doing my best to hold up my end of the bargain. It's exhausting, really. But I'm doing my best and He knows that. 


One thing I know for sure is: 


I know My God is real and you will never ever ever convince me otherwise. 



If you feel led to share, please do. 


Read the old posts, have a cup of coffee. It's been a wild ride.


Also, homegirl wants to dabble in acting/modeling. I don’t know how I feel about that but if you know somebody, help a sister out. I’m talking something small and reasonable bc we have cheer practice. JCPenney commercial. Target ad. something reasonable, ok? High Functioning Autism deserves its place in the world, too. 


My good friend Lynel once told me - if God is in the center of it, it will all work out. 


Boy was she right. I will never be more thankful for any piece of advice I've ever been given.


Matthew 5 15-16 says: 

Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. 16 In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.

I’m trying to share her y’all, her social calendar stays pretty full. 


Happy Thanksgiving, friends. 







Sunday, August 6, 2017

How Things Change!

My "On This Day" reminded me that today, three years ago, was Elsie's first day of daycare, taught by a former Special Ed teacher. 

She got kicked out a few days later. 

It's hard to believe how far she's come.  

She’s gone from 
wild child with all day meltdowns
sensory everything
sign language
picture exchange communication systems
having to “practice” doing every day things like going to the store 
countless hours of Speech & OT
dressing in baggy clothes because she couldn’t handle the fabric touching her
liking to hide behind hair in her face, and couldn’t handle it being brushed

has grown into the most well behaved kid we know. She is happy, cheerful, and her smile can light up a room. 

She does all the things we feared she wouldn't - TALKS non-stop, plays ball, gymnastics, loves getting her hair done, is obsessed with headbands and big bows, and demands to wear a dress everyday.

All the tears shed, hard-work, and painful prayers were worth it.

She did it!

Tomorrow, she starts Kindergarten in a regular class - just like all the “normal” kids.

We will never be able to repay all the guardian angels along the way, who’ve helped her get this far. This kid is a walking miracle and we are beyond blessed to call her ours.


Thursday, November 10, 2016

The Photo You Won’t See on Social Media


The Photo You Won’t See on Social Media


She’s asleep in a hospital bed in the trauma room at the local Children’s ICU. 

Her hair is tangled, sweaty. She’s put up quite the fight. 

Her face is pale, but sleeping peacefully in a way that makes her look angelic. 

Her head is tilted to the right, so she can’t wake and see what’s happening on the left side of her body. 

Her right arm, a bracelet from the first local hospital, before an ambulance got her here. 

Her left arm - an IV. A painful one. 

It took 3 nurses plus her mom and grandmother to get it inserted. 5 people. 4 holding her down, the other trying to quickly and accurately get it in just the right spot. She’s a strong little thing and she knows how to throw elbows. It’s a good thing. 

But it hurt. 

It hurt everyone in the room, especially her. 

Under the arm, a splint to keep the arm straight. Over the IV and splint - a Mickey Mouse diaper. A Mickey Mouse diaper hiding the reminder of the pain, the reminder of what’s in her arm, and hiding it from being touched and yanked out. She is so small, the diaper takes up the space of her whole arm. 

Her left wrist - two hospital bracelets. 

Her entire left arm is covered. 

She’s wearing a hospital gown. A tiny one made especially for tiny babies that shouldn’t ever have to be in tiny beds in tiny trauma rooms in the intensive care unit. They don’t belong there. They especially don’t belong in the trauma room. 

Underneath the hospital gown is her tiny, naked - bull moose strong - but now frail body. And a catheter. The catheter was just as painful as the IV, for everyone involved. 

In her lap - her favorite babies. Her babies are so important to her, and her aunt delivered her favorites. Miss Kitty and Miss Monkey. 


Underneath the photo is a medical perspective of what’s really happening. Her tiny organs are shutting down, and her body is preparing to die. 

That tiny baby is my non-verbal and autistic, scared out of her mind three-year-old. 

….to be continued

-lj



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.