Rain Man Thirty Years Later

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

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

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

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

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

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

 

Magic Mirrors

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

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

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

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

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

My 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.