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.

 

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.

What my boys want you to know about Autism.

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I have read many books, followed several blogs, joined a plethora of groups, and talked to a multitude of moms regarding autism.  While I love learning about the topic and truly need the solidarity the groups and other moms provide, I have learned the most about autism from simply listening to my son. You can’t help it really. He talks incessantly and sometimes, it takes awhile to fully get his sentences out. He stutters and repeats words and looks back and forth in the air as if he is literally (and frantically) looking for something.  I have fought the urge to finish his sentences and snap my fingers with an impatient, “Focus! Son! Finish your sentence!!!”  Most of the time I’m looking around for some holy water to sprinkle on the situation. Im pretty sure that’s not how that works…

He loves dates. He says it helps him to organize things in his brain.  Sounds great, in theory, but I can’t remember what month it is. He knows the year every movie was made. If he has seen it, he knows the year. There are several he knows that he has not seen. In homeschool, we were doing an exercise where I gave him an answer and he had to come up with a question. For example; I say, “Fall.” And he will respond, “What is one of the four seasons?” In response to the answer, “1988,” he quickly said, “What is the year after that movie came out that you love with the princess and the giant and there is sword fighting?” He is referring to Princess Bride. He has seen it once 2 years ago.

Thankfully my mom put this together and asked him why he was always looking in the air, as if he was trying to find something. He explained that he was looking for the right file. I will never take for granted that my son is verbal when others with autism are not. However, he still has a communication disorder. Our words flow automatically, without thought. Trust me, I know all about this automatic talking, no thinking thing. I have gotten in a lot of trouble over the years for speaking without thinking. People with autism do not have the words and complete thoughts readily available. They know what they want to say, but it is sometimes lost in translation or simply hard to get out. To have such an amazing brain, he is a prisoner to it.  The more severe the diagnosis is on the spectrum, the more trapped they become. Unable to communicate or deal with the world around them. This doesn’t mean there isn’t beautiful thoughts and ideas in those brains, but they are simply unable to be released for the rest of us to enjoy.

I asked my oldest what he wanted everyone to know about autism. This was his response…

“I want people to know that autism makes your brain different. I want them to know that I have it.  I like having it because it makes you awesome. Well Daddy is awesome and he doesn’t have autism….Oh and people don’t really know that much about it. I guess you need to tell them. It makes you different than everyone else and it makes some things hard to do. Like school, Momma! And writing! Tell them it’s hard to concentrate. But I like it because my body has to move a lot so we always have more fun. Oh!!! And it makes me really smart!!! Tell them all that.”

Notice he said exactly zero about momma being awesome. What a butthole  blessing that angel is…(insert eye roll).  My littlest little was asked how it felt to have a brother with autism….

I still have a really good big brother. He’s not really that different. He’s still fun and stuff. Maybe autism makes him a good big brother. I don’t know, can I go play now??”

Be! Still! My! Heart! And also, is it too much to ask for them to answer a few questions? I only got fat and ravaged my body carrying you little heathens. No big…

My littlest little doesn’t know any different. He accepts his brother for who he is. When the meltdowns used to be downright scary to witness, I would ask my littlest if they frightened him. He said, “No, I just know he gets a little crazy sometimes.” Don’t we all son, don’t we all.

Our point is this: Ask questions. If you are unsure about something that makes you uncomfortable or that confuses you, ask.  You might want to extend a little grace as well. Grace to the child for the behavior or words that you think are not ok. If they tell you that you smell like bug spray,  it is simply an observation. I can also guarantee you that you do, in fact, smell like bug spray and they are not trying to be mean. On a side note, you might want to take care of that mess… And please, give grace to the parent or caregivers that are doing the absolute best they know how. Our parenting may look a little different but mother of baby J, hold your tongue. (That blog post is next…there may or may not be a little hostility in those words, Lord help me.) Lastly, try to understand. Everyone is not walking the same path.  Some people soar above it, looking for their files.

 

Code Purple, Davis House

 

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I have seen a lot of things as a psychiatric nurse.  Six of my ten year nursing career was spent at a prominent hospital in Dallas.  This means that we were one of the hospitals that the police brought you to when you were picked up naked and obstructing traffic. Perhaps someone called the police reporting that he had six hostages, some of which he had already killed, in his basement, only for the police to show up to a man with a gun talking to people that weren’t there. And bless his heart, the poor guy didn’t even have a basement. He earned himself a VIP trip to our psychiatric emergency room. Hearing things in change of shift report with sentences like, “Pt ‘Bob’ (HIPAA and all) castrated himself on a camping trip” or “Don’t give ‘Suzy’ anything that can fit in her rectum” seemed totally normal. I guess that really is a relative term.  But we had a system in place at this particular hospital called a code purple. This meant anyone and everyone run to that location because somebody has lost their itshay and things are about to get real. You never knew what exactly you were running to but you knew it wasn’t going to be boring. It was honestly exciting and terrifying at the same time. It was also wonderful knowing that if I ever found myself on the wrong end of someone else’s wrath, help would be coming soon.

We are in serious need of a code purple at the Davis house. I may or may not be the one that is losing my religion because of the stress but it is definitely taking a toll on the whole family.  Let me explain. After 20 years of suffering from Ulcerative Colitis, my husband has decided to take out the beast that has tried to kill him and make his life a living hell.  He had his colon completely taken out. No biggie. I mean it’s just a colon, right? Apparently it’s kind of a big deal.  I felt the need to get the surgeon to take pictures of his colon to show me. I guess I wanted to confront this tormentor. We also found out that he has an abnormally large set of intestines. Of course he loves to tell the joke, “You know what they say about guys with big colons.” (insert eye roll) His friend, Nick gave the epic answer of, “they have big poops.”

Ok,  I’ll try to start at the beginning. I have been with my husband for 16 years. I have never known him without Ulcerative Colitis.  In the beginning, we were able to have periods of remission. For the last couple of years, there has been no relief. Every drug and natural remedy and diet known to man has been tried to no avail. The problem with this horrendous disease is that it affects everything, not just your colon. UC is an autoimmune disease so his body decided that his colon was the devil and it needed to go back to the pits of hell where it came from. Unfortunately, it brings lots of other body systems down with it.  As scary as it was, I was beyond ready to get the offending culprit out, ASAP.  But it’s not my body. Apparently I don’t get to decide. I had to watch him suffer until he decided the surgery was, in fact, worth it.

Although he should have been discharged a week ago, he has endured one complication after the next, LIKE A BOSS. I would rather give birth 10 more times with no anesthesia, while getting my toenails ripped off and simultaneously have acupuncture be performed on my eyeball than have to go through what he has gone through. He has not eaten or drank anything in over a week….except for the popsicle he manipulated some poor nurse into bringing him. The problem is he has a nasogastric tube from his nose into his stomach, set to suction to let his intestines rest until they decide to stop being assholes and work again…..see what I did there? He got his colon out?? Ahhhh I’m hilarious. But I digress.  The RED popsicle sits in the tube and makes the container look like he is bleeding out but he will still deny his rebellion. Even despite his red lips. I guess with all the man has gone through, he deserves a popsicle.

That army man I married has always been stoic. But the irony that his father went through this exact surgery at this exact age is not lost on any of us. He lost his dad to colon cancer 3 years later. This has been an emotional ride for his entire family.  Seriously, get your colons checked.

As we speak, his blood cultures have grown boogeymen, meaning he has an infection somewhere that has gone to his blood.  With all the tubes and hoses and instruments that have poked holes in his body, there is no telling where it originated from.

As you know, my oldest doesn’t do well with change. Having their superman in the hospital this long is hard to take. Homeschool has been disrupted, any type of normalcy is gone, and momma has to go see daddy and can’t figure out why he can’t go.  With all things considered, I am very proud of both of my kids. Our last therapist told us, “Never put a limit on progress.” I know this could have been so much worse.

This is what I have learned. I love my husband more than I ever even thought that I could.  Not just because he laid on a table for over 6 hours having a major surgery, or realizing how much I miss him when every single day is uncertain, or seeing what an impact he has on our beautiful boys, but because I have never been so proud of him in 16 years.  Trust me, he has done some pretty amazing things. But as I watch him as he has given his all in every aspect of this recovery even when he has nothing left to give,  it makes my heart both hurt and swell with pride.  He has never wanted anyone to feel sorry for him or think that his situation is serious. I’m pretty sure he told his job he’d be back this week. Lord Jesus, I hope they know what a total colectomy entailed and that he was full of poop…well not anymore….OMG I’m hilarious! All I know is that I want him home, by my side, every day for the rest of my life. Not that I didn’t know that before, but it is more vital and urgent now than ever before. God put me on this earth to love that man.  It is only secondary that I hate taking out the trash and cleaning the turtle aquarium. I swear those things are secondary.

I have also learned that my oldest little can pull through for you sometimes at the exact right time. Nevermind that it is probably because momma’s mood swings lately are terrifying…hey whatever works. The boy that wouldn’t allow me to leave the room has been left with my mom every single day during this poop storm that is my life right now. God is good.

I covet your prayers. Some people say they will ‘send good vibes’ but I don’t even know what that means.  Family has come from over a thousand miles away just to take a shift in the hospital or watch the boys just so I can.  That’s what real family does and I will never take that for granted.  We fight, but we love hard and we always stick together.  My friends have offered countless times just to bring me coffee or sit with me. Then there’s the friend who brought me food at 2 pm because she figured I hadn’t had a chance to eat that day (she was right). Love, love her. God has put wonderful people in my life since we have moved to Virginia and I am beyond grateful.

Emotions are running high and we are all about one catastrophe away from a code purple. I’m sorry if I am not returning texts or answering calls. I literally forgot the entire week last week that my 4 year old goes to school.  I went an entire day with silly putty stuck to my butt and knew it but didn’t care. My son just informed me last night that he hadn’t bathed in awhile. That assessment is probably accurate. Thanks again for the ones that have checked on us and please extend a little grace if I am extra grouchy or cry because I ran out of my favorite coffee creamer.  But do know that my husband is a rockstar and that he is the toughest man I know.  Thanks again for your prayers.

Day 2: What Would Love Do?

This question almost seems to be rhetorical. Mostly because it comes with such a loaded response, it can’t possibly be able to be answered. Not fully. My short answer would be that LOVE WOULD CHANGE EVERYTHING. Yes, I mean everything. The bible says that christians will be set apart by the way they love. Unfortunately, that simply isn’t the case. Hypocrisy and judgment and exclusion are not loving nor are they biblical. But I digress. this post is not about the actions of the misguided…or is it?

My oldest son has autism. One of the most heartbreaking realizations was that, while you can teach someone what to do in a given situation in order to be socially acceptable, you can’t teach emotions. Once when I told him I loved him, he responded with, “I love you too…I think…I mean I think I love you. It’s hard! How am I supposed to know what love is? What does that even mean? What does it feel like?” Heartbroken, I didn’t really have an answer, other than tears. My son doesn’t even know whether or not he loves me.  After a lot of thought and prayer and acceptance and mommy tantrums, I think I have made sense of his questions. Love is not an emotion at all. It evokes emotions that are wonderful and euphoric. But loving someone also unleashes a passion which means that person can also hurt you the most, even cause anger or rage. Someone that means nothing to you can not cause such responses, not on the same level.  Anyone that has been married for any length of time can surely attest to this.

Love is a verb. Love is an action, a continuous and conscious effort that doesn’t always come easy. It takes maturity, self awareness, and most importantly, it takes selflessness. To imagine a world filled with love would be to imagine a Utopia. Something that surely won’t be seen this side of heaven. But what if love started with me, with you? Can we change our world for the better with love? Would it even make a difference? The bible says that without love, you are nothing, it’s all in vain.  “If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but do not have love, I am nothing. If I give all I possess to the poor and give over my body to hardship that I may boast, but do not have love, I gain nothing.” (1Corinthians 13:2-3)

So I get it, love is important. But what does that mean? How do you show love, exude love, emanate  love in our daily life. Apart from His love, our love will never be perfect. But how do we strive for this magical potion that changes the world? In 1 Corinthians it goes on to say that love is patient, kind, humble, selfless, honorable, is not easily angered and does not hold grudges (emphasis mine because I may or may not have…ummm…issues with the latter two…uh, let’s move on).

If love embodied every person on this earth, truly filling their heart to the brim, overflowing to their actions, wouldn’t that change every single wrong doing?  But what if we showed ourselves these same mercies. What if we were patient and kind to ourselves? I can only imagine that it would put us in a different headspace. A space that could repel and forgive the negativity even if it came from our own thoughts. A space that could love the unloveable and allow past transgressions to melt away, including our own. This isn’t something that can fully be achieved, but the journey can be encouraging, empowering, rejuvenating, and all together lovely.

 

Update On My House Arrest

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The setting is nursing school and the main character is a hypochondriac with anxiety and OCD. We will call her Courtney, because that is her name. In nursing school you learn about most disease processes, and as a person riddled with worry anyway, I undoubtedly had every disease we studied (with the exception of prostate, testicular, fontanel malformations, and maybe cleft lip/palate….yep, the rest were fair game). This hypochondriasis was not unique to me alone. My best friend was convinced she had AIDS without any symptoms or exposure. But this isn’t a blog about her so let’s move on.  During third semester (give or take, this is my story) I became convinced I had lymphoma. The symptoms, albeit vague, were there and my lymph nodes were, in fact, enlarged. No big deal, I’ll just go to the Dr and let them tell me how utterly ridiculous I am and I will then find something else to worry about. The kink in my plan started when the Dr agreed with my diagnosis and thought that my theory was actually likely! After a plethora of labs were drawn and a biopsy was done to find the culprit of my symptoms, I was told, “We will let you know the results in 2 weeks.” Two….WEEKS.  As the days grew longer it consumed my every thought to the point that, not only did I have lymphoma, but I was dying. Part of me knew this was ludicrous (not to be confused with Ludacris). But those thoughts set up camp in my brain just to make sure that any rational thoughts on the subject were redirected back to Crazy Town.

So one night I remember going into the bathroom to wash my face. I don’t remember being sad or upset but when I looked in the mirror, I had this crushing thought. This overwhelming dread and fear that I was dying. Newly married, in nursing school, never having kids.  As the tears began to flow, I became angry that my life was over before it even started. I literally kneeled on the floor, in the dirty bathroom (the military housing was super old and never actually looked or felt clean), with the water still running (sorry Mother Earth, I do better now at conserving water), and I sobbed. Like the ugly Kim Kardashian cry (My bad, I will never reference them again, forgive me). I prayed, “God, WHY?!?”

And as instantly as this cockamamie debacle started, it stopped. I was jolted to my senses and God said to me (not audibly but just as evident), “Don’t you trust me?”  I couldn’t move. I felt a peace that I hadn’t felt in months and I felt so silly for letting something consume my every thought that wasn’t even reality (spoiler alert, I did not have lymphoma). “Don’t you trust me?”

When you are in the middle of the battle, real or perceived, you think it will never end. When I cried day after day that God would give me a baby (that would stay in my womb)….He did. When my first born only slept through (up to) one hour at a time for the first year with no naps and a need for constant movement, I tried to accept my fate. This is it, I will never sleep again. But I did. When a heartache from a broken marriage consumed me and I just knew that not even God could fix this one. He did, and made it better. When a family member was so lost in the throes of mental anguish for TEN YEARS and I thought she was gone forever. Her mind was restored. When I fell into the deepest pit because I was a prisoner in my own home (read my other posts for our family’s autism journey)…I see light at the end of the tunnel.

This Saturday, we have a babysitter coming for the first time in a year and 2 months. This Saturday, I will be in the same room with my husband in the dead middle of the day, without my kids. And not only can I go to the bathroom by myself without meltdowns and fear and panic, but I can go freely from one room to the next without a single scream. This Saturday my son will not see me and will not even know where I am. With a hesitancy and an inkling of a tear, he proudly said, “I’m ready. I can do this.” This may not seem like much to you. But to our family, this victory is monumental.

I say all of this because I talk too much….Oh and also to say this… Mark 4:40 says, “Why are you so afraid? Have you still no faith?” Still after being pulled from the rubble so many times? Still after turning devastation into beauty? Still after He has proved His grace time and again….”Don’t you trust me?”

I don’t know what will happen on Saturday. Honestly, I don’t care. The progress we have seen is so huge that I am ecstatic knowing there’s hope. There is a way out of that pit. No matter how deep or how far you’ve fallen. “Don’t you trust me?”…..

Meet My Monster

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I love to be the first one in the house to get up.  If you know me at all, you probably think that is, at the very least, sarcasm or just a downright lie. I love to sleep. I can’t for the life of me understand why it isn’t one of the 5 love languages. (If you haven’t read that book, do it now. If you have kids, read the one for kids too. Life changers. You’re welcome.) On the weekends when my beloved says, “hey why don’t you go take a nap?”, my love for him at that moment is so strong that I might just explode. This alone is a good enough reason to have married this man. And I don’t even care if he is offering/strongly suggesting because I am hard to deal with and he can’t take me another second. Or maybe he just wants to play Halo 5 without my incessant talking. Motives makes no difference to me, he said the word “nap”. Sometimes I think I could sleep 24 hours straight. I even amaze myself at my mad sleeping skills and have often wondered if maybe I have mono or something. No one should be as tired as I am. My husband assures me that whatever mysterious sleeping sickness I have, I have had for the 15 years he has known me. My mom says it has been all 34 years she has known me.  So it seems to defy the laws of logic that I have been choosing to get up earlier than the fam. But it’s true.

My monster has done this to me. I wake up every morning with this looming dread that has set up camp in my chest. The kind of dread the happens just after the worst case scenario (whatever that may be). This causes my insides to revolt in the most unpleasant way. Dread, panic, fear, frustration…they are all piled on top of each other in my chest competing for thoughts in my head. I absolutely hate starting my day like this. Every! Single! Day! My interactions with my family suffer because of this intruder.  It makes my startle response rival that of someone with PTSD and when my son wakes me up to come with him to the bathroom because he’s scared, I just feel down right angry.

I get it. I sound a little crazy. Crazy is a relative term. I have been a Psych nurse for 10 years and have seen crazy. Wrapping your own poop neatly in towels and keeping them inside your shirt is crazy. Sawing off  most of your fingers and your own foot with a hand held saw is crazy.  Don’t get me started on the lady that ate most of her face…. I am assuming this is not acceptable conversation so I’ll move on.  I’ll wear the crazy label if I must. Any kind of deviation from Stepford Wife tends to be frowned upon.  My dear husband seems to think there are lots of my kind of crazy but they don’t write blogs about it;)

Whatever you call it, I hate it. And even more than the monster, I hate that my family has to suffer because I can’t handle my emotions. I would do anything! Rub Cheetos on my third toe?? Sure, if you say it might work.  By trial and error, I have tried getting up early. Trying to get my hot mess of a mom self together before the boys wake up. Prayer, yoga, reading, repeat. Whatever it takes. This actually works really well. This morning I got up at 6am and had coffee by the pool. All….by….myself.  When you don’t get a moment to yourself, ever, and you’re surrounded my mass chaos, being by yourself is like winning the lottery…and not even having to pay taxes.

I am strangely drawn to and terrified by nature. They say everything is bigger in Texas but I beg to differ. Behind my house is nothing but woods, and this swamp, river, creek thing.  This makes for a breeding ground (literally) for some strange animal sightings and some of the biggest insects I have ever seen. I am sure my small dogs could be carried off by some of these spiders and my husband and oldest little have reported a “huge cat thing bigger than our dog climbing up a tree.”  I try not to make eye contact with the forest. Maybe it will take this as a sign of respect and not send its tenants into my yard to eat me. I check the pool skimmer and, when I see fur, I close my eyes and replace the lid. I have no problem taking care of the pool and I have already rescued a turtle, a duck, and 13 baby chicks. What more do you want?? There are these huge pterodactyl bird looking things that I am certain could take on a coyote…one of which I saw brazenly walking down my street. No doubt trying to make a snack out of the geese that run the neighborhood. And go ahead and google “hellbender”.  I am certain it is called this because it is a literal  demon sent from the pits of hell to take your first born.  I saw something that looked like this come out of the ground right in front of me while I was pulling weeds from my flower beds.  It looked like a giant pickle with wrinkles like a Shar-Pei and a weird tail but moves as fast as those tiny geckos. I also learned that I am a freezer. You know, your fight or flight response? I don’t know where my fight went but my flight most definitely didn’t operate properly. I froze for what seemed like an hour and tried to figure out if I was still alive and if I still had control of my bodily functions.

But as I sat there this morning, I could smell the honeysuckle that is growing with abandon on the back fence. I could hear the owls talking to each other in perfect sequence. I could hear large “beasts” (???) running through the woods (I’m assuming modern day dinosaurs but again, no eye contact). The wind from the trees and the sun and 55 degree weather was absolutely perfect. I was scared and completely in awe at the same time. It was glorious. A testament to God’s greatness. A gift. Then I realized that I would have never been outside to witness any of it without the monster. I was forced to give up my beloved sleep to fight this monster and, in return, learned that my mornings to myself hold some of my favorite parts of the day. You will be amazed at what God reveals to you when you are quiet and still. It makes me wonder what else I am missing out on because I am so concerned with my own discomfort.  It makes me want to try new things and take more chances. Who knows, maybe I’ll run a marathon! Hahahaha that’s totally a lie. If you see me running, you should probably run too. Something is most definitely chasing me. It’s probably one of those dinosaur birds…or those hellbender things they said were “very rare”. Liars…. Regardless, I will keep trying to count my blessings in the most unlikely of places. Even if that means I lose my precious sleep. RIP old friend;)

 

 

 

Nothing says, “What a great mom!” like a child with a broken bone.

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My son just turned four years old and has broken two bones already in his short, little life. Now before you clutch your pearls around your neck, gasp, and call CPS, let me explain. Ok, actually, I don’t have an explanation. Not a good one, at least. The first was when he was 18 months and he pulled a huge, flat screen TV on himself. The second, was earlier in the week. I’m not sure exactly what happened because I wasn’t in the room. He said he plopped down on the bed and his arm was straight, “and it just crumpled and collapsed.” (I already told you about his vocabulary). So off we went to the emergency room as I wallow in my mommy guilt. I listened as the Dr asked my son if he was home alone and I saw the inspection for more bruises. They were just doing their job but this just pounded the guilt even further in. Guilt is kind of my thing. That and anxiety. I am super good at generating so much anxiety that I can make a chihuahua appear calm.  My guilt fuels my anxiety which puts me in this vicious cycle of insecurity. Guilt over not knowing what to do when my oldest is out of control. Guilt over my kids eating pizza AGAIN, while I’m sure ya’ll are over there feeding your kids kale smoothies and salad with non GMO, completely organic, 100% homemade dressing. Guilt over getting frustrated, again, for something I know is beyond my oldest son’s capabilities. Guilt that I try so hard, but can’t find the joy in the mundane.  Guilt that I can’t always savor every moment even though I KNOW one day I will miss this age, this stage in life. Guilt over not being the wife that my husband deserves.

God and I have been talking about this a lot lately, more than usual. Partly because I’m in a bible study which demands actually opening my bible. If I’m honest, I find it hard to just pick it up and read it. I used to get so annoyed when someone was asked what their favorite book was, and with their (no doubt) kale smoothie in hand, would answer, “The bible, of course!” (Eye roll, they need to get out. They probably aren’t readers. I bet they haven’t read since Moby Dick in high school.) But really, I was just jealous I didn’t feel that way. That’s why I adore my organized women’s bible studies. Well actually, it’s three reason. First, I grow closer to God by prayer and reading His word (novel idea). Second, I get to hang out with other women and have adult conversation. No one is going to ask me to make them juice, or fix their shoe, or wipe their bottom (thank you, big J for that). And the chances of me having to referee an argument between two women fighting over who gets a turn with the hulk lego (the one with BOTH arms) are slim to none.  No meltdowns or kicking or screaming. And when I have to go to the bathroom?  I just get up and go…by myself. I will never again take that luxury for granted.

There is something really cool about a group of women getting together to high five Jesus. Our background, financial status, number of Facebook friends, heck number of real friends, parenting style, numbers on a scale, hangups, etc etc…don’t matter. We all come to learn, from the study and from each other. Even if you’ve never owned (or even opened) a bible, or just finished writing your sixth book (with your kale smoothie) about the life of Jesus, it’s irrelevant to the purpose of the meeting. Which brings me to my third reason. Aside from my own growth, I get to see others learn and grow and it’s a refreshing, beautiful process.

But back to my God talks. I am struggling with the fact that my anxiety and guilt are so prevalent and real, but goes against everything that the Bible stands for. Insert my anxiety/guilt cycle for knowing this but not being able to apply it to my life.  I know that my identity should not be rooted in my circumstance, I get it. I know that my son’s cast or my neighbor’s eye rolls or my pizza dinners or my utter exasperation with my life as a mom, don’t define me.  James says to “consider it pure joy whenever you face trials of many kinds.” Slow your roll, James. I’m not there yet. I can’t imagine I will be saying, “bring on the chaos and turmoil” anytime soon.  But I know God can take the ugly, wretched, broken, steaming hot pile of mess that is sometimes my life and make it beautiful. He can turn the guilt and anxiety into mercy and grace and hope. But for now, for today, I will start little. I accept the fact that I am who the bible says I am. I will hold my head high in the grocery store as my child with his splint (cast next week) and my oldest are too loud and act like caged animals that finally broke free. I see your stares.  But I’ll try to smile from confidence knowing I don’t have kale in my teeth. That goes for my children, as well.

P.S. I actually love kale, but you get my point;)

 

An open letter to my neighbor.

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Today I had a lady ask me if I practiced attachment parenting. I am not even sure what that is. Then I felt incredibly inadequate because I didn’t even realize people actually parent using a “method”, unless of course survival mode is a method. Then I’m all over it.  I just kind of wing it. I guess I’m the ring leader. Not in the sense that I lead the chaos. More that I try to corral the wild animals. I don’t always do that well. I try. Really, I do. But the truth is, I feel frustrated most of the time. I yell at my kids more than I should.  I don’t always play Minecraft with my biggest even if what I am doing isn’t that important. I let my boys jump on the bed because the occupational therapist said he needed a large trampoline to jump on every day. We just moved from Texas, y’all. It’s hot outside.  I sometimes tell my baby I can’t hold him because I am folding the laundry. I am pretty sure they ate potato chips for dinner one night last week. I am tired. I am exhausted, actually. The kind of exhaustion that sleep can not fix. I am weary. I feel ill-equipped for this whole mothering thing. I wake up every morning thinking this is the day I will not let the frustration get the best of me.  But then homeschool happens and it takes 20 minutes to answer one question because my biggest cant focus. 20 minutes.  Sometimes he says he feels out of control and writhes on the floor laughing, literally moving every part of his body.  Ya’ll those days, we are just not ready for public. Or at least public is not ready for us. So out the door they go. Run and be loud outside because we are all a little stir crazy. This basically means, my neighbor hates us. We share a fence which means they have front row seats to my crazy.  I would love to meet her and share recipes or whatever good moms do. But here’s the thing, they have already seen us at our worst.  Here is an open letter to Hannah (I have no idea what her name is).

Hi Hannah! I’m your new neighbor:) Yes, that neighbor.  As you already know, I have two boys. They are both great kids. My biggest little is funny and creative and spontaneous and brilliant and loves to do. He loves to ‘do’ anything, as long as he’s moving. My littlest little is sweet and loving and has the vocabulary of a college professor. He goes with the flow and is content and easy to please. I tell you this because you haven’t gotten the chance to see that side of them.  I know you’ve heard some strange shenanigans going on and I would love to explain. A couple of weeks ago when you heard me yelling at my son to get out of the pool and it was 50 degrees outside (who knows how cold the water was)? Well, he has sensory issues and doesn’t feel the same things that we do. He has always been the kid that refuses coats, no matter how cold. On that particular cold day, he ran outside in his underwear. I told him to go back in but sometimes he is in his own world and doesn’t seem to hear anything. I saw the wild eyed look and knew what he was thinking. My calm mom voice didn’t work and I was’t close enough to him, hence the yelling.  He jumped right in like it was a warm, 95 degree, sunny day and swam without missing a beat. I thought for sure I would have to actually get in to physically pull him out.  Did I mention he was spontaneous? I guess impulsive would be a better word.  He is a sensory seeker, mixed with impulsivity which means there isn’t a puddle he hasn’t jumped or laid in or wet paint he hasn’t put (at the very least)his hand in. He touches everything, really. He might even throw it. Just today he threw a cherry slush in my car. He loves a switch to flip, or something to be pulled down or pushed over or (his favorite) something that can sustain his weight so he can climb on it.  He drove a locked car through a busy, restaurant parking lot when he was 3. Jesus for real took the wheel that day;)Around that age, he pulled the water hose into our living room and turned it on full blast. But I want you to know my son is not bad, he has autism. He has a problem with cause and effect. He is still learning the consequences of his actions. Aren’t we all. And you’ve become acquainted with my 4 year old and his scream. I was hoping he would leave that blood curdler in Texas but no such luck. You hear it several times a day, I’m sure. One example might be that he is being repeatedly steam rolled by his brother. My big needs pressure on his body. He likes to be squished and begs for us to put couch cushions on him and put all of our weight on them (pretty sure I might have lost you on that one). He begs his bother to roll on him. He loves it and doesn’t understand why his brother does not.   You’ve witnessed (well, heard) my son’s melt downs that are alarming to say the least. You might have even witnessed some of mine.  I know it sounds like WWIII over here and to that, I would have to agree. It kind of looks like it too.  But if somehow you could look past that, we are a super fun family. My boys are adorable and will quickly win you over.  I would love for us to be able to talk, although I wouldn’t be able to offer quiet morning coffee on the porch. But if ever you are up for a rowdy, family game night and a killer lasagna, I’m your girl.

Sincerely,

Your New Neighbor

P.S. Sorry about the grass. Our lawn mower is broken, both of them. I promise we are working on it;)

What Autism is NOT….

Today, I meticulously worked with a needle dipped in paint to try to turn a regular Lego minifigure into Two Face. You know, from Batman. I worked on that dumb thing all day.  I proudly presented my finished work to my son, sure he would be overwhelmed with my genius artwork.  He stared at it blankly for a full 5 seconds then very slowly began to scrunch his cute little nose and then furrowed his brow. “Well it’s not good but I’ll play with it. Thanks, Momma!”  Really, kid? Did he really just say that?  A little part of me died. I wish I could say I was kidding but it felt just like it did in middle school when someone made fun of my shoes.  You see, my son has no filter. It’s kind of his thing.  When our realtor (who is also a dear friend that drove all the way from Indiana to Texas for us) was at our house, my son entered the room and broadcasted in his most polite voice, “You said he was coming over to talk about the house. You never said he would be here for 4 hours. Is he about to leave?” He’s a straight shooter. He tells it like it is without regard to your feelings because in his mind, he is just pointing out facts.  This is something that we will obviously have to work on. The boy does not have a future in customer service…or with the public (bless his heart).

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We are desperately trying to learn more about autism so we can meet him where he is and give grace when we can. But along this road, I have learned that there are a lot of misconceptions about what autism really is.  There are tons of great books out there on the subject. In short, it is a huge steaming pile of frustration with a side of guilt for not having all the answers. Maybe it would be easier if I tell you what autism isn’t….

  • A terminal illness. For the love of sweet baby Jesus in a manger.  I can’t even count how may people have responded to finding out my son had autism with a look of utter anguish, followed by, “oh my goodness, I am so sorry” (looks slowly into distance with head slightly shaking at the injustice).  He’s not dying. He is actually very healthy. His reality is just a little different than yours. Not bad, just different.
  • A bad word. Even his occupational therapist whispers the word like it’s the f bomb. Dudes! We are never going to foster acceptance if we continue treating this like a bad word.  Autism is not bad, just different.
  • In need of a cure. Friends!! I do not want to change my son. I just want what the rest of you want for your children, to be happy.  His brain is inspiring. He can do things with his autistic brain that leaves my neurotypical brain in the dust.  It takes all kinds to run this world.  I’m a nurse. It’s my passion. My son? He said he wants to make video games and be a paleontologist and an astronaut that lives in space. I believe he can. Not bad, just different.
  • Always fair. I get it. Life’s not fair.  Autism and OCD often times go hand in hand. Please hear me when I say this is definitely not the case for all children. The most common phrase I’ve heard since this diagnosis is, “If you’ve met one person with autism, you’ve met one person with autism.”  But for my little one, he has had to endure more fears and anxieties than any 6 year old should have to endure. The constant need (not desire) to have things a certain way, are overwhelming for me, but gut wrenching for him. Despite his distress, he is brave. He describes his brain in terms of shakiness. He says sometimes it shakes violently out of control and sometimes it just sways. But it always “feels like it’s on a roller coaster and there are lots of sharp turns and I’m always moving.” He says things like, “this world isn’t made for me, momma. Other people understand what’s going on and I don’t. People get mad at things or laugh at things and I don’t know why. Sometimes I say things but you hear something else.” In some ways he is far beyond his years. Not bad, just different.
  • A stereotype. My husband has been in school since I met him 15 years ago. That is only a slight exaggeration. He has also changed his major a minimum of 1,205 times (truth).  Right now he is trying to finish an english degree. Because that helps you as a financial advisor (????). But I digress. In one of his classes, he wrote a poem about his two sons. Everyone in the class had to respond. One lady said, “Oh your son has autism? Those are some of the sweetest kids in the world.” Nope.  That’s not really their method of operation. If in doubt, see first paragraph……

All I want is acceptance. Just.The.Way.He.Is.  Some of you may see the world clearly, others through rose colored glasses. My son’s glasses are more like drunk goggles (google it, it’s a thing). But being that awesome despite his diagnosis is hard to do. And he does so beautifully.