Next Week, I Become A Man

Ok…It’s a possibility that I am exaggerating. I won’t actually know until I wake up from surgery. I mean, I know I won’t actually be a man but I will no longer have female hormones. Here’s the thing, I know every woman goes through menopause but I was hoping I could gently ease into it without noticeable differences and still be able to keep all my fabulousness. Oh…and not at 37. But here we are. Severe endometriosis has wreaked havoc and is finally getting an eviction notice.

So as I sit across from the Dr, along with my sexy piece of man pie (my hubs), she tells me all the grizzly details about the changes I will go through. I mean, I know. But the way in which she delivers the news was a little…umm harsh.

“You’ll get slowed metabolism so you’ll gain weight, get facial hair, hot flashes, and premature aging…” The woman just put me on hormones that made me gain an unreasonable amount of weight and she’s basically telling me I’m about to turn into Shrek.

Then McDreamy beside me says, “It’s ok because she won’t be in pain anymore.” Be! Still! My! Heart! This is what it’s come to.  This is what 18 years together looks like. It is not always pretty.  Let’s be real…he lost a colon and that was a lot of (literal) poop I put up with.  He can handle a rogue chin hair.

So I am having a total hysterectomy and that is a major surgery. Here are my wishes: If I die, Chris is not to marry someone prettier or more fun than me. Also my bff’s can not be bff’s with her. Ugh…now I just made myself jealous of this imaginary person…

So if you are the praying type (and you should be), please pray for a successful surgery, that I don’t wake up as Shrek, that Chris survives my hormones, and that the weight gain and chin hairs stay to a minimum. My dreams of one day being his trophy wife are smashed but perhaps I can have a side hustle as the bearded lady…

A Homeschool Mom’s Guide to Going Back to School

For those that don’t know, I homeschool my 2 highly energetic (slightly crazy and unmedicated) boys because I love to spend my days torturing myself. I would say I am just kidding but I definitely have a love/hate relationship with my 24/7ness with my children. Couple that with not being able to have a babysitter or drop my oldest off at any kind of childcare (church, gym, etc) and that’s a whole lot of togetherness. I often feel that I have given up everything to mother these heathens. Please understand me when I say that they were both wanted dearly and, after suffering from a miscarriage and an ectopic pregnancy, they were the miracles I longed for. But the thing about being a parent is that you can’t put contingency statements on it. You are either “in”, or you aren’t. Personally, “in” for me means giving up a career that I loved and worked hard to achieve in order to help my son at home. I would be lying if I said it doesn’t make me sad. I miss being a nurse, going on dates with my husband, or even sitting in an adult Sunday School class with him.  My children will always be worth it, but I am losing a part of myself.

A dear friend and member of my über swanky tribe (we are just a bunch a moms hanging on for dear life) went back to school last fall. And then it hit me…I always said I wanted to be a nurse practitioner by the time I was 40. Here I am, 37, not working, homeschooling (which wasn’t even on my radar) and wondering where all the hours go in the day. Church, soccer practice (each boy a different night), soccer games, AWANA, two different therapies for my oldest, co-op, committees out the wazoo and I don’t feel like I have a second to spare. But what if there will never be a “good time”?

Here is my advice. Do it. Don’t think about all the what if’s. Change them to “what if I don’t.” What if you never ask for that promotion? What if you don’t reach out to that friend? What if you don’t do what you know God is calling you to do? But what if you do…

I had a friend ask me the other day if the other areas of her life would suffer if she went back to school. Ummmm, yes. I bought extra snacks last week in hopes I would get out of cooking a couple of meals. Some rooms in my house look condemned, like they may be a health hazard.  Sometimes I don’t think an entire day would put a dent in the laundry.

If being the mom of a child with ASD has taught me anything, it is how to celebrate the small things. I completely realize that our victories look different than they do for most others. But that doesn’t make them any less monumental. The other day at church, my son left the sanctuary, where my husband and I were talking to friends, and went with his friend to the gym. With tears in my eyes, I proclaimed loudly, “He’s not in the same room with us!” People that do not know our situation looked at me like I was an over protective lunatic that needs to get out more. Yes, Linda. Yes, I do need to get out more. But the fact that he could be in another room without us in public is a gigantic accomplishment. When he came back in several minutes later, he was beaming. He was almost as proud as we were.

I am learning the same goes for this journey. I kind of felt like I have my life in order because I just came out of my office/guest room and there weren’t 15 piles of clothes to be done in the hallway. I turned in both of my assignments due on Monday and it is only Friday. I don’t mean to brag, but that makes me feel like a pretty big deal;) Don’t worry about the dust on the stairs that you can write your name in, or the 4 loads of laundry to be done in the laundry room.  I brushed syrup out of my youngest son’s hair today…and I don’t remember the last time we had syrup.

“I attribute my success to this- I never gave or took any excuse.”

-Florence Nightingale

P.S. Florence didn’t have kids but I bet she would have been a hot mess mom too. Hey, it’s not pretty, but I’m doing it. You can do it, too.

P.S.S. Lots of moms have more on their plate and they are killing it at life. Please just don’t share those stories with me. They probably do crack on the side;)

New Year, new….word??

Image result for happy new year image

Ahhhh, it’s a new year. This means everyone and their dog can be found at the gym. Everyone’s diet has already started, and undoubtedly some have already failed. I, for one, hate New Year’s resolutions because I hate the inevitable feelings of inadequacy and failure that accompany when I really want those french fries. Call me weak if you wish but who’s crying in their chia seed and kale smoothie? Not this rotund chick…

I have a few friends that instead do a “Word of the Year”. It can be anything, really but some examples have included; hope, change, forgiveness, different, growth, etc. This “word” should ideally be prayed about and keep your focus on that concept throughout the year.  Sounds so much better than no pizza, right?? However, I have never been “moved” to participate. Until this year. I was a part of a group text that was discussing this concept when I felt very strongly that God was telling me my word.

“ABIDE”

Wait, what? Maybe that wasn’t God at all.  That’s not even a word I use. Dang it, now I have to go look it up.  Ya’ll, I’m so glad I did. This is what I found.

Abide is a verb meaning to accept or act in accordance with. Ok, cool. I’ll listen to God more. Got it…

“Keep Looking”

Maybe I’ll just resolve to walk everyday, or pretend I didn’t hear a word. But God has never failed me, His way is always better. FINE….

So I started looking up what it means to “abide in Christ”.  But first, a little background story. My oldest little is on the spectrum and has a lot of problems with anxiety. His father loves to point out the fact that he gets that from my gene pool, but I digress.  One technique we use for him is guided imagery. A therapist helped us come up with the ultimate place of peace, relaxation and overwhelming joy. Yours may be on a hammock on the beach or cozied up by a toasty fire reading your favorite book. My son’s is a purple chair. He marches to the beat of his own drum so whatever. To abide in Christ is falling back, open arms into your purple chair (or whatever your nirvana is). Abiding in Christ means rest.  And not “rest” like you went upstairs to hide in your closet from 2 screaming boys that slightly scare you.  Real rest. Peace.  Purple chair kind of peace. Sign me up.

Abiding in Christ also means to trust. Trust that His ways are higher than your ways. That His thoughts are higher than your thoughts. Trust that His words are true and for you even if they don’t seem easy. Abiding in Christ means making tough decisions to follow when it’s not easy. To accept that the God of the universe has your back. So with abiding in Christ comes security. John 14:23 says, “If anyone loves Me, he will keep My word, and my Father will love him, and We will come to him and make an abode with him.”  To abide in Christ means to dwell in Him and He in us. Not like a traveller that is only passing through. Not like this beautiful farm house I am renting but will eventually have to leave. Not like your mother-in-law that comes and stays too long (jk I love her and she never overstays her welcome…). Permanent. Dwell. Settle in for the long haul. There is a song saying that this earth is our temporary home. Abiding in Christ is forever.

And if you are still with me (I write like I talk…. a lot), abiding in Christ is all about growth. It is impossible to be in God’s presence and follow His commands and not be transformed.  So 2019 will be a year of transformation, but you may (definitely won’t) not see me at the gym everyday.  But rest assured I am growing, it’s a process.

ABIDE”

“He who dwells in the shelter of the Most High will abide in the shadow of the Almighty.”

Yes, please. Sign me up for that.

Rain Man Thirty Years Later

I have had several people reference the movie Rain Man since my son was diagnosed on the autism spectrum. I remember, “One minute ’till Wapner” and counting the toothpicks but I actually remember nothing else about the movie. It came out in 1988…I was 7. I can’t imagine my parents letting me watch an R rated movie at age 7 so I’m not completely sure I had seen it, in it’s entirety.  The stars must have been aligned just right and God must have felt sorry for me today because my kids were watching their iPads quietly, without fighting, or screaming, or demanding something of me.  I even bribed them by building a cool fort (separate ones, of course, because I’m not stupid) all in the ruse that I am a cool mom. In reality, I wanted to try and grab my phone and watch the movie. If a fort and an iPad as a babysitter make me wrong, I’m #sorrynotsorry. And let me tell you, the movie gave me all the feels. Let me explain…

Of course every single person on the autism spectrum (ASD) is completely different. That being said, Dustin Hoffman did an amazing job. The writers did their homework for the part of the autistic man, and for the part of the people he interacted with and how they treated him.  Ray stopping in the middle of the street because he noticed the “Don’t Walk” sign despite traffic blaring horns to get him to move speaks to the literal, concrete nature of people with ASD. The need for rituals and the inability to change routines is well portrayed. My heart broke when Tom Cruise’s character says, “You know what I think, Ray? I think autism is a bunch of sh*t. You can’t tell me you’re not in there somewhere.”

This. This is how I feel on the days that I don’t understand my son’s irrational fears. This is how I feel on the days that he can’t focus and his brain is out of control. I know he’s in there. It’s not his fault there is a disconnect in his brain that makes things seem different.  Like Charlie told the nurse, “He lives in a world of his own.”

It’s been 30 years since the movie came out and I’m not sure that much has changed. The “profound” (sarcasm font) advice from the Dr in the movie was; “His brain works different. What he does isn’t intended to be annoying. If he’s getting on your nerves, take a break.”  But what about the caregivers that can’t. What about when there is no break in sight. I think trying to understand and offer individualized coping skills would be a much better care plan.  The Dr followed up with, “Most autistics can’t speak or communicate.” That has to be the racial equivalent to, “Some of my best friends are black.”  OY VEY

One of the main takeaways from this movie has been that people with autism have cool party tricks. The can memorize phone books and count 6 decks worth of cards to win over 80 grand at a casino. Here’s the deal; every person on the spectrum is different and they aren’t all show ponies. My son does, admittedly have some very cool abilities because his brain is wired differently. But my husband is a walking encyclopedia of random knowledge and can play a mean guitar but is 100% neurotypical. He also has beautiful blue eyes but that is neither here nor there;)

Here is what I absolutely loved about the movie. Charlie (reluctantly) learned the importance of Ray’s routine and worked that out accordingly. He knew that he had meltdowns and didn’t always know how to reciprocate feelings. But guess what? He fell in love with him anyway. Just the way he was.  He tried to change him and realized that his efforts were completely in vain. He realized that Ray’s frustration was even greater than his own. He realized that he was worth it. He was the best big brother just the way he was. We could all learn from Tom Cruise (in this movie only bc he is super cray in real life).  Different not less.

 

The Mom at the Door With No Pants

When my oldest was a baby, he never slept.  Several months into motherhood, I got my first full hour of sleep and I thought that was surely what the people that vacation in Bali felt like. He was constantly moving, never sleeping, and lots of screaming.  I tried everything. Car rides, swinging, dietary changes, Dr visits…I heard that babies like white noise which could easily be replicated by a hair dryer. My husband had to break it to me that it didn’t work when he found me at 2 in the morning. My son was screaming bloody murder in his crib, I was sobbing…on the floor…in the pitch black…holding a hair dryer.  I swear I would have rubbed Cheetos on my eyeballs if someone told me it might work.

My husband’s favorite story was the day I met him at the garage door. I was holding our precious son out at arm’s length, waiting to pass the baton. I couldn’t do it another second. He! Never! Stopped! Crying! I was inconsolable because I was exhausted from sleep deprivation. I was devastated that I couldn’t comfort my own child. I felt like a failure as a mom, as a wife. Hubs got out of the car as I’m crying, “I can’t do it! I need help!” He smiled, took our son, and said, “Baby, where are your pants?” I vaguely remembered in my stupor that our son had spit up, or pooped, or some form of baby excrement on my pants. I don’t really remember taking them off, and quite honestly, he should just be happy that he parked in the garage rather than in the front of the house. I would have just as easily been the crazy, pantless neighbor in the front yard.

Last Thursday was another one of those days, sans the no pants part. I was tired…no exhausted, at the end of my rope, drowning, losing my ever lovin mind. Everything made me angry. My kids didn’t like me, my husband didn’t like me. I didn’t like myself. Friday was better. I met with my bible study girls and told them of my shortcomings. We (metaphorically) high fived Jesus and I decided I would remember to only think on things that were true, noble, just, pure, lovely, trustworthy (Philippians 4 something or other…don’t hold me to that). Truth be told, nothing I was thinking fit into any of those categories.  Try as I may, I felt dread, exhaustion, and anger. It was like a filter was placed over my eyes. If the kids would just listen…If my husband would just help me more…

Saturday morning the kids were playing loudly in the kitchen, kicking around a roll of duck tape like it was a soccer ball. Nothing out of the ordinary. It sounded like a stampede of water buffalos running for their lives. I don’t know what that sounds like but I am thinking it’s loud. As I was screaming like a wild banshee, it hit me like a ton if bricks. It’s me. They aren’t really doing anything different than they do any other day. They are always loud. They are hardly ever still. But it was me that couldn’t handle it. My fog was getting thicker. I went to bed for the rest of the day.

I am completely aware that some of you can not relate. You may even be clutching your pearls at the fact that I can’t get myself together to perform normal human functions, like wear clothes. But that’s just it. I do not always have it together. If I’m being honest, I don’t have it together most of the time.  My house is a wreck, my youngest ate a bowl of shredded cheese for dinner the other night, my husband has long ago come to terms with the fact that cooking, “isn’t my thing” (read: I can’t cook), and my kids have broken 5 bones between the two of them. No Mother of the Year awards will ever line my mantle.  But I think it’s important that we can say, “I’m a hot mess. I don’t have it all together. I need help. Pray for me.” I am thankful for the women I have in my life that I can be authentic with.  That hold me accountable but offer an abundance of grace. I promise I am trying. I love that God is not finished with me yet. I love that He gave me the exact children I needed and the best daddy to help raise them (and send me to bed for the rest of the day when I act like a lunatic).  Momming is hard. Most of the time, I feel ill equipped to do the job. But when my son runs through and says, “Love you Momma! You’re the best Momma ever!”  I won’t remind myself that he has nothing to compare it to.  I’ll cherish it, and let it hold me over until my next crazy episode.

Magic Mirrors

Next month is Autism Awareness Month. I have thought long and hard about how I can bring awareness to autism and shine light on these amazing kids and adults that see things a little differently. Ok…a lot differently.  I want to tell everyone that will listen about my bright, beautiful, funny eight year old that loves presidents and history and dates. I want to show you the unbelievable things his brain can do and how he basically sat down at a set of drums for the first time and played like nobody’s business. But the truth is, there is an ugly side to autism. A side that, at my very core, I hate.

Tonight, my son yells, “Is something wrong with me?? I feel like I’m different from everyone else. I feel like ya’ll are trying to have an important conversation with me sometimes and I don’t know what’s going on.  I get in trouble a lot and, most of the time, I don’t even know why. I don’t want to be different!”

My heart was broken. The tears fell as I looked for comforting words. The mama bear in me wanted to fix it. I go to hug him and he pulls away. “Can you let go of me? Why are you crying? Let me go!” Hugging is not his thing. No matter how many times I say that out loud, it doesn’t change the fact that I want to hug my son or the fact that he hates it.  I’ve got nothing. I can’t hold him or tell him that it will get better. The reality is, it will not.

Being an autism mom is a lonely road. Since autism is not a facial expression, my son looks “normal”. Actually, he is super cute and charming and has a smile that lights up his whole face. I feel guilty for complaining since my autistic child can talk and communicate and do truly extraordinary things. I feel guilty for complaining when I know others have it so much worse. The comparison game is a killer.  Truth be told, no matter how charmed my life is, my child is hurting. His brain that is such a blessing has also become a curse. His ability to see his differences also makes him feel less than. He sees the world like a magic mirror maze that distorts his perception.  He is horrified that no one else sees it. No one else can get him out and there is no way to go in with him.  I have assured him that his daddy and I are in it for the long haul. That we will work with him and help him navigate his scary, parallel universe. He starts crying and asks a question that I have lost sleep over many times. “But what happens when ya’ll die? What if I can’t drive a car? What if I can’t have my own house? What will I do??”

In nursing school, I had an instructor ask if it would be better to lose control of your mind, or your body.  Losing your mind sounds horrible. However, after 10 years of psych nursing, I have met several pleasantly psychotic people. They may be crazy as Gary Busey on acid but they are happy in their own little world. But losing control of your body would be a torture I’d rather not face either.  My son is completely capable of driving a car, living alone, having a job. His life will always look different than I had envisioned but I am thankful he is capable. The part that devastates me is that he is a prisoner to his mind. He’s trapped in the magic mirrors.  Sometimes he panics and feels claustrophobic and lonely because he just wants the fog to clear. I am beyond proud of him. He is the bravest boy I know. Not because he’s not scared, but because he has to deal with a strange, scary world alone, and lost. Even though I am, and always will be, right beside him.

My Cup is Empty.

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My cup runneth over. Seriously, I have more blessings than I could stir in a bucket and I truly appreciate them all. I have two beautiful boys despite the years I wondered if I could ever be a mother. I have a super sexy beef cake of a husband that is the best provider and daddy to our littles. I live in a precious farmhouse with all the character you could ask for. I stay home with my babies and watch them grow and get to teach them every day. And let’s not forget, I live by the beach.  Try not to feel sorry for me. Here’s the catch…my cup that runneth over is also empty. How could that be? I’m not sure but it’s bone dry.  Not even day old coffee grounds stuck to the bottom.

Let me explain.  My day is filled with chaos. Of course, it is.  I’m the mother of two small boys.  But my life is lived on super-high-alert-panic-mode 24/7. Everything is a crisis.  Today, I have a love/hate relationship with autism. There, I said it.  I love the way autism gives my son a creativity and world view that I would not have been privy to without the blessing of being his mother. I love that autism allows him to calculate things that simply don’t make sense for him to know, like just knowing how to play the drums. Or memorizing all of the presidents. Or knowing the release dates of all the movies he watches. Being able to tell who the artist of a song is before he even hears a voice, simply because of the way the music sounds.  But damnit, I want to hold my son. I want to kiss his little face without him looking like I am physically hurting him. I want to do homeschool without repeating myself 5.7 million times because, “my brain is out of control, momma. I can’t hear you.” I want to get a babysitter and leave the house with my husband. I want to sleep with him in the same bed, without kids…this includes the floor. I want to go into a room and shut the door and be alone.  I want him to go to sleep at a normal hour so that I can have adult time. I want him to not wake up 23 times in the middle of the night because he’s scared. I want to leave my own room in the morning without fear that he will wake up in a panic that he is alone.

We do a therapy called neurofeedback that helps with symptoms of his autism that manifest as OCD, ADHD, and severe anxiety.  During this therapy, he has EEG electrodes attached to his head.  The therapist recently pointed out something called “sleep spindles” on the screen. She explained that these usually only occur in people with autism and that it is basically like a car with a bad alternator trying to turn over. There are spurts of energy that are firing at the synapse but the brain is basically flickering. Like trying to start a lighter that’s out of lighter fluid. His brain is momentarily asleep during those times. So OF COURSE he can’t focus, or think straight, or has constant anxiety. OF COURSE he tries to control his environment in what little ways he has control over. I get all of this. And it saddens me to my core.

But you know what’s worse? Feeling frustrated when I know he can’t help it. Trying not to scream after the 11th time I repeated the directions. Or losing my religion because I tried to sneak in the other room to make a phone call and realized, I don’t have that privilege. Or feeling like I might smack the paint off the walls because I am never off the clock. Never not on edge, ready to put out the next fire.  Then I think about so many others that have it worse than I do.  I’m not sure how they survive.

My goal throughout this experience has been to educate and advocate for my son regarding the challenges and differences that accompany ASD. But a huge part of the struggle is that of the care giver. And the guilt the care giver caries. “How can I complain? It’s not his fault. Am I doing enough? How much more can I take?”

As I sit here writing this, doing the ugly cry (my poor husband), I think the hardest part of all is that he has no idea how much I love him. How much I try.  How sorry I am that I lose my temper or my patience with him, knowing it’s not his fault. Since autism is a communication disorder, will he ever know?

Until I can pull it together and act like a normal human again (I’m not sure when that might be), remember that I am trying. Yes we are late, yes I’m grumpy, yes my kids act like I injected them with cocaine before we left the house. But sweet baby Jesus, know that we are trying the best we can. And sometimes my cup is just plain empty.

 

My Atypical Son

IMG_7619Social media is fake. I truly hope this is not an epiphany for any of you.  I don’t think we intend for it to be that way, but let’s be honest. I try to only post pictures that I have one chin. You won’t see pics of my ample backside or on the days my adult acne can rival that of a 15 year old. I try to be real and transparent, but I’m still human.  We only put out there what we choose for the world to see. I’m all for it!! I don’t want to read about your husband’s affair or your daughter’s jailed boyfriend (as entertaining as a front row seat to the drama may be). But this altered reality can also skew how we see life.

I tend to think everyone has it together, except of course, me. Everyone makes their children super nutritious, organic meals and they never yell. Parents spend hours with their children playing minecraft or playing legos and never complain. Faces and marriages and childrens’ behaviors are always perfect. My feelings of inadequacy, especially as a parent, can hang on me like a hair in a biscuit. It’s a thing…have you ever seen a hair cooked into a biscuit??

Sometimes (most of the time) I feel like surely everyone else has this parenting thing in the bag and I am left paying for the therapy bills for the kids I have screwed up. In these situations, what you really need is someone to say, “I see you. I’ve been there. I know what you’re going through.” You need someone to say, “Me too.”

This is how I feel as I am watching the new Netflix series Atypical.  Let’s start with a disclaimer. My son is not exactly like Sam, from the show. But both having ASD, they are more similar than not. People with ASD usually have a particular fascination with something. Sam’s is arctic penguins or something like that. It’s hard to hear the whole dialogue through my sobs. My little has a slightly cooler fascination which is music. He is completely obsessed. It’s like his body has to play an instrument or he will simply die. I’m known to be dramatic but this is legit. As I watch Sam navigate the dating world with all of the misguided (at best) and profoundly ridiculous (at worst) advice that he receives from his peers, I vow to never stop homeschooling him for the duration of exactly forever. As I watch the heartache and ridicule he goes through, my shoulders heave and the ugly cry is unstoppable. As if my poor child has not already endured enough.

I know my little is only 8. But I have literally prayed for his wife since he was in the womb. I prayed that she would love him and accept him for who he is and appreciate his talents. That was before I knew he had autism and before I even knew what his talents were. Before I knew that he had the most precious curly hair or that his entire face lights up when he is laughs. Before I knew that his brain worked differently and his talents would far exceed my own.

I have heard it said that I can’t shield him from the world forever. Hear me when I say that is and never will be my intention. But I would like him to go into the world on the same playing field. With the same skills and coping mechanisms that others are equipped with. That only seems fair.

My sadness with ASD lies here…Will he ever be on the same playing field?

I think the mother on the show was written after my life. Well, take out the adultery thing but let’s not split hairs. She has arranged her entire life to make her son’s life as normal as possible. Always trying to prevent that next meltdown or heartache or disappointment. She becomes neurotic and slightly crazy.  Most importantly, she has lost herself. She is an autism mom. She has thrown her life into that role and all others fall below. I would be willing to bet this is the story for most moms (or dads) of kids with special needs.

We all want our children to succeed. We all want to send them into this world with all the tools they need to be productive little humans that aren’t a drain on society. I want to raise my children to be leaders, to love others above themselves, and most importantly, to put God first in all they do. Some days I wonder if I’m even making a dent.

Is it fair to pray for his wife when I am unsure that his anxiety will ever allow him to live alone, or drive a car, or (for the love of humanity and all things good) to even sleep in his own bed?  It’s daunting, if I’m being honest.

But let me tell you about the flip side to that coin. My little fuzzy headed, perfect boy has taught me the importance of celebrating victories, no matter how small. He has taught me the importance of unconditional love. I know the importance of not worrying about tomorrow, although I continue to struggle. I know that God has a plan. His kisses and hugs and snuggles are even more precious because I don’t get them often.  He has taught me that I am strong. I can endure far more than I thought I could. He has taught me that my struggles seem minuscule in comparison to his own. And he has taught me to never put a limit on progress.

I may never be able to tell my son that I understand how he sees the world. I may never be able to give him that, “me too”. But I can promise him that I will be beside him through it all.

 

Our Wild Ride

The most well thought out plans are still basically water in a bucket with a hole in the bottom.   Sometimes the hole is big, sometimes small but inevitably parts of the plan starts to slip through. You may be able to patch the hole and continue on. Sometimes you’ve lost so much of the original plan, you can hardly recognize it. I ramble to say this;  We plan and God laughs. 

As I write this, I’m on my way back from a road trip with 2 rambunctious (read:crazy) kids and a husband that recently ditched his colon (read: we have to stop every 1.4 miles for a bathroom). At some point we thought it was a brilliant idea to travel 11 states in 10 days to see every family member we have ever had in one fell swoop.  And no I’m not driving and blogging.  

I always get teary eyed when I go “home”. I wrote about that here: http://wp.me/p7rGXX-8B

As I was visiting family in Louisiana, I got word that a dear family friend passed away unexpectedly. She was one of those women that I want to be when I grow up. You can’t NOT be drawn to her and her infectious smile and her love for others, her family, her God. I find myself wondering how this could happen. WHY this happens.  I can only take peace from the fact that we are not the ones in control. 

Now on to the picture…. We passed it on the way to the wake. She’s a beaut isn’t she? A real classy place. A place where dreams come true. The place I met my husband almost 17 years ago. Only one of those previous statements is true. It’s not called the same thing, it’s slightly run down (I wish I could say it was drastically run down but….), and it’s much more disgusting in the daytime, but otherwise, not much has changed.  I don’t think this is how little girls dreams play out. Nonetheless, it’s where my love story starts, I’ll wait for the judgement and laughter to subside.  (Along with my embarrassment.) 

I took my kids to the house on the lake that I lived in as a child. I told the stories of how I broke my arm, learned how to ride a bike, swam in a swampy, snake infested lake right where we stood. I kept thinking, I never imagined I would bring my own kids back to this very spot.  I started thinking what my life would have been like had I never moved from that tiny town. 

We laughed at old, family stories. Some I’d heard a hundred times but were still just as funny. We visited my father in laws grave, with my curious children in tow. I asked my husband how he felt having his family visit his dad, in the only way available this side of heaven. Needless to say, by the time we got to Dallas, I was a wreck. We were a couple of miles from our first house we bought together when he got out of the Army. It was supposed to be our forever home. The one we brought the boys home from the hospital. It’s also where I planned every detail of my future out. 

So there we were, at Uncle Julio’s to get our fix of good Mexican food because Virginia is amazing but has the worst Mexican food on the face of the planet. (Seriously, stick with seafood if you visit.) But it felt so familiar…well it was familiar. I missed my friends, being close to my family, I missed Texas.  The tears fell. Yes, at the restaurant. 

So Virginia is unmistakably where God has led us.  I never would have guessed that a country girl would marry an Army man and live in Dallas. I never knew I would follow said man to the ends of the earth. I never imagined I would struggle with pregnancy loss, or have a child with autism,  and I would have PROMISED you I wouldn’t be one of those Moms that homeschool. I definitely never thought I would live, and be happy, in Virginia. Not because it’s not perfect, but because it was never in my plan. When I get a glimpse of the big world outside my tiny plans, I get excited and feel like I’m going to throw up all at the same time. I get asked often if we are in Virginia to stay. I could definitely live there and be happy. But my plans tend to sway towards being a bucket with the big hole in the bottom. So for now, I’ll try to push the nostalgia aside, and enjoy the ride. My super classy Wild Ride…

What Not to Say to a Parent of a Child With Autism.

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I was always the girl who didn’t care what people thought of me. I liked being different. I liked not following the crowd. Then I became a mother. I have never felt so judged or scrutinized for all the things by all the people, in all the places.  I too had many lengthy talks with my husband about how we were going to raise our children. We had seven years as a married couple before God blessed us with our oldest. Seven years is a long time to discuss parenting conundrums and use others’ bad booty kids as examples of how we would not parent.  Ok fine, it was mostly me. Husband loved these conversations as much as he loves root canals but my persistence for late night talks usually result in an apprehensive listener. I am the queen of these ridiculous conversations. They may start off like, “If our daughter comes home 15 minutes after curfew, what would you do?” Remember we were still childless at this time. I may even throw in a, “If I was addicted to cocaine for 10 years and my dad was in the Mexican Mafia, would you still have married me?” Ahhhhh poor husband….

I love to plan. It’s my way of feeling like I have some type of control. And I loved to think of any and all scenarios they may or may not arise as parents to see if we were on the same page. You never know when your  teenage son’s head may or may not get stuck in the bars of the window when attempting to sneak out. I mean we would need to be a united force with a punishment. I think the saying goes, “We plan, and God laughs.” This could not be more true than when I became a mother.  Almost none of my super mommy skills worked. The unsolicited advice that came from the moms that had acquired the real super mommy skills were in such abundance, it kept me secluded from the world for far longer than necessary. I just couldn’t handle another stare, another look of disapproval, another well meaning mom offering the cure. I resigned to the fact that my child was just not ready for public, of any kind.

Now, I have said some pretty ignorant things in my 35 years. Seriously, an alarming number of dumb things have spewed from my larger than normal mouth.  However, nothing gets me hotter under the collar than parents judging my mad skills…and I don’t even wear collared shirts… Please understand, this title is misleading. It appears to only concern parents or caregivers of children with autism.  Let’s just stop the insanity with all of the parenting high horses. Let me give you a few examples:

  • You fix what everyone else eats and, when he/she gets hungry enough, they will eat.”   This is a super favorite one in our house, until we realized our child would starve. For the same reasons that he doesn’t have the same perception of hot and cold, he does not have the same perception of hunger and full. He has swam in icy water and we have to be very careful with the water temperature in the shower because he will burn his skin. He’s the kid with a short sleeved shirt in the middle of a snowstorm. He graciously puts on a coat after I beg and plead and tell him everyone will think momma is a terrible mother for freezing my children…bless him. I don’t need any more ammunition. Eat this or eat nothing? No problem. My child would starve. We also have to watch how much he eats because he doesn’t have a “full sensation” until he feels sick. So yes, I make different meals in my house. No I don’t make my kid eat whatever I cook for the rest of the family. Trust me on this one, this battle is minuscule in the grand scheme of things. I mean this in the most sugary sweet southern tea sort of way but, You don’t know my life.  Yes, you just saw me feed my child cornbread for dinner….move along.

 

  • Nothing a good old fashioned spanking wouldn’t fix.”  For the love… Remember that lack of sensation thing? Spanking has zero affect on a child that doesn’t feel pain appropriately. Oh, I’m not spanking hard enough, you say? Beating your child is generally frowned upon. Trust me, I always said I would spank my children. However, I was given a ninja as a child that would make an excellent UFC fighter. Please pray for his safety…

 

  • You really shouldn’t let your child sleep with you in your bed.”  I can’t even with this one. He has had problems with sleeping since he was born. He will not sleep unless he gets melatonin and this is not an exaggeration, hence the 3 am trips to Walmart to pick up a new bottle, proving ‘one night will be fine without it’ was WRONG. He has fallen asleep in public less than 5 times in his life. The first was in his stroller, at the State Fair. He was 2. Add anxiety on top of these issues makes for a less than optimal bed time routine. If he wanted to sleep on the roof on a bed made of slug trails, I’m in.  You do what you have to do to live…and sleep.

 

  • Just take away (insert tangible privilege) and he will stop.” Let me explain. My child wants to please you, me , his friends, etc. His brain does not work on the same wavelength. He doesn’t want to be in trouble any more than I want to catch up on my laundry but sometimes, it is not under his control. Does that give him a free for all excuse? Absolutely not. Punishments are not black and white. You mean what you say and you say what you mean but you also learn to adjust and learn what works, then mourn when it stops working two days later. This is an absolute guarantee. I am super glad (and slightly jealous) that these techniques work for your little angel, but it’s ok that we don’t all operate the same. It actually makes it worse that autism is not a facial expression. You see, you can’t tell by looking at him that anything is amiss.  You can’t see heart conditions either, however they still exist…just saying.

 

  • Just put him in his room and shut the door until he can calm down.”  Last year, our move was the hardest for our oldest. Moving, loss of normalcy and routine, a death in the family, all led to what I affectionately refer to as the epitome of hell. These meltdowns were not simply tantrums fueled by not getting his way. Actually, he was never trying to gain something when they began. His extreme terror of not being able to see me caused what looked like a need for an exorcist. There was bloodshed and it was heartbreaking. A six year old should never experience this type of fear.

 

Psychology and development are not pure sciences. Not only are there always outliers and anomalies, but as intricate as God has made our brains, only proves the vast number of differences that need to be taken into consideration when raising a child.  I guess what I’m saying is, “You do you, Boo!” In a perfect world all parents would be there cheering each other on like the dude with wings in the red bull commercial (look it up, it’s hilarious).  I am super excited for you that you have it all figured out. But for the rest of us, we are doing the best we can with what we have been given.  And I promise I am just as horrified when my son tells you your breath stinks.  This is not a testament to my parenting skills. Maybe just grab a mint and move on. We are working on it. Also, maybe remember that children are not trained monkeys. I grew up in a generation where children were seen and not heard. Those children that were not heard did not have autism. I am the first to say that I don’t have all the answers. But I can guarantee that I have tried everything, this is to include lots of crying, praying, and wine. Don’t judge.