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.

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.