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.

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;)