Tears, Tiaras, & Mammoth Dog Paws

“STOP IT! STOP TOUCHING ME!! LET ME GO! JUST LET ME GO LIVE IN THE WILD!”

“I’m never going to stop. I’m never going to let you go.”

The sound of screaming drifts past as I am walking the dog. He’s a Great Pyrenees named Hercules and we chose to make him a part of our family for this reason. I replay in my mind the decision we made that led to this moment. Our ten year old daughter has been in her school pageant every year.  This year our five year old daughter with Autism Spectrum Disorder wanted to be in the pageant. My husband and I discussed it at length. All questions, no answers.

“What if she has a meltdown?”

“What if we spend this money and then she can’t handle it?”

“Is there anything we can do to assure it goes as smoothly as possible?”

“Should we tell the people in charge of the pageant that she has autism?”

We eventually decided we would just go for it. Sadie wants to do it. Let her go out there and do what Sadie does. We would have faith in God and how He made Sadiebug. We wouldn’t tell anyone who doesn’t already know. We just want her to be her. No labels, no limitations. Beauty pageants don’t matter to us. There is no judge in the world that is more of an expert on how beautiful our children are than my husband, myself, and God. Girls just like make-up, puffy dresses, and curly hair. All Sadie wanted was a trophy. She did specify, “I kinda want a big one.” More than likely she wanted one of her own because her big sister has several. Sadie looks up to her sister and wants to be just like her. Sadie just wants her own trophy.

In many ways Sadie’s autism worked in her favor. She had a pretty dress, make-up, and her hair was curled. She also finally had the opportunity to wear the black high heels we never let her wear. In Sadie’s mind there was just no question as to how she looked. Having done this many years with our older daughter I know the questions that go through their minds, “Does she have a better dress? What if the judges like her hair more? What if I trip?” None of that entered Sadie’s mind. She only saw herself from her perspective and from her perspective she was a princess.

When she made a mistake on stage and went the wrong way the autism also helped. With our older daughter when she went the wrong way once you could see on her face she was embarrassed and lost all confidence. Not for Sadie. She looked at the X’s placed on the stage to direct the contestants, assessed where she was supposed to be, and went there. No embarrassment, no drop in confidence, just “X” marks the stop.

In a darkened auditorium I sat with her father, her twin brother, her baby brother, and most of the town watching as trophies were handed out. I watched my 38 pound child’s fists clench more with each trophy handed to each beautiful little girl. I silently prayed she could hold it together to realize what everyone in the auditorium, but her, already knew. She was the only child without a trophy because she was about to be crowned queen.

It’s 10:30 at night now. She’s had a day full of sensory overload. I dreaded this. As the puppy finishes his business I stand on the porch in the cool, crisp Alabama spring air and look down at Hercules, who is now whining by my feet. He’s only a puppy. He hasn’t had training yet to help Sadie with her meltdowns. With a sigh I decide to do what we did with Sadie and give him a chance to shine. We go in the door and the scene is more horrific than usual. She is trying to hit and bite her dad. She is contorting into positions you only see in movies about the paranormal.

“STOP IT! STOP TOUCHING ME!! LET ME GO! JUST LET ME GO LIVE IN THE WILD!” Sadie screams at her dad who is trying to stop her from hurting herself while also gently applying some pressure to her small body, which helps with sensory overload.

“I’m never going to stop. I’m never going to let you go.” He replies sadly.

“Come on Hercules.” I whisper as he moves with instinct and hops onto her bed. She begins to try to hit Hercules and then looks at him while he puts his mammoth paw across her small belly.  She slowly begins to calm down and quickly she asks for an ice pack for her head that is hurting. She strokes Hercules’ downy, white fur and stares into his big brown eyes. Something passes between the two, a little girl with tears, a tiara, and autism and a gigantic puppy with a patience well beyond his 4 months of life. The crisis is over for the moment.

I sit down and my husband, Sadie’s daddy, is doing his best to try to hold back tears. “It’s just so unfair. It’s such a big accomplishment for her and she can’t even enjoy it.” Sadie’s pain hurts deep inside me and my husband’s pain does almost more. I remember on Valentine’s day how deflated I felt when we took the kids to do fun, free stuff they each would enjoy and it ended with Sadie having a meltdown and having to be carried off the downtown streets amidst all the onlookers. Her kindergarten teacher later told me that the next day Sadie told all her classmates about her exciting day. I said to my husband, “She will.”

I truly believe as a parent of a child with autism, or even without autism, you want to stop the pain. Avoid the meltdowns. Meltdowns are one of the ways children with autism cope with sensory overload. We might be able to decrease the meltdowns, but in doing so we limit their exposure to the world. We limit the opportunities for them to learn to cope. We limit their chance to shine.

I was ecstatic when Sadie got that crown, not because I needed a judge to tell me she was beautiful. If you think she’s pretty in a dress you should see how pretty she is when she, her twin brother, and Hercules are all covered in mud. Or how gorgeous she is holding a frog that slowly, methodically tinkles down your leg. No, I was ecstatic because Sadie’s autism helped her achieve her goal. Sadie used her different abilities to achieve her 5 year old dreams, “Mamma, I want a trophy. Maybe a big one.” Tears, tiaras, autism, and mammoth, white dog paws. They all shine if we let them.

Ribbons Fade

I have to be able to do this, even if I feel like I may throw up. I have to be there. I WANT to be there. I keep driving through the southern countryside, passing cows, and wondering to myself what cows think when they see cars? That is clearly one of life’s truly important questions.

I’m not a social person. One on one I’m great. When I really get to know someone I’m great. It’s the journey between not knowing someone and knowing someone I have difficulty with. I feel like I can’t breathe. I remind myself to take deep breaths and to relax my muscles that tense up painfully without my consent. Someone needs me and there’s one thing I HAVE to see. As I arrive at my destination I sit in my car for just a minute, breathe, and relax while asking God to help me shut out the infinite sounds, colors, noises, and smells I know I will encounter. I remind my brain it doesn’t have to interpret and dissect every single stimuli, just one.

Ok. It’s go time. I  push the baby and the stroller for what feels like a mile, mostly up hill. I come to a white, folding table and hand over a five dollar bill to the woman seated there. I hope they don’t notice that my hand shakes as I reach out for my change. I walk through the gate with bars that reminds me of an ominous, nineteenth century prison and I hear a gunshot. The stench of gunpowder stings my nose. Screaming pierces my eardrums as people are running past me.

It sounds scary, doesn’t it? It shouldn’t be. It’s an elementary school track meet. My mind perceives it the way it perceives everything, as incalculable stimulants. None of that matters now. I’m here and I see a beautiful brown-haired girl with a bounce in her step, freckles on her nose, and a smile on her face. She’s why I’m here. I just got here in time to see her run in her first event, a relay. We aren’t sure when her other event will be called. Over the course of the next three hours she stands with me, talking and laughing, rather than going to the bleachers where all of her friends and their parents are. I have her baby brother in a stroller where I can’t go up in the bleachers. This is not really true. I’ve managed to do the impossible on a daily basis so if I want to find a way into the bleachers I could. I don’t.

It’s too uncomfortable. I will have to figure out what to say. My brain will read everyone’s body language, facial expressions, and tone of voice. I will get mentally drained much quicker because my brain is on full alert with an insurmountable task of assessing and interpreting all of the stimuli. I would worry about what the other people think if they notice me shake, courtesy of the adrenaline pumping through my veins. There’s so much here, but I am here for one thing.

I have a great time. My daughter’s friends show up. The other parents come by and we talk.  Never too many at one time. After all, no one wants to stand up this long,  except me.  I truly enjoy all of them. I just have to hide the fact that I can only handle a few people at a time without my brain wanting to shut down on me. I’m here for one really important thing. I have to conserve my “mental energy” for this ONE thing. I can’t use it all up on stimuli.

It’s time for my daughter’s last event. I break out my camera. This is so important to me. I have to get these pictures.  Pictures matter because through that small window I can stop my brain from focusing on all the stimuli that doesn’t matter and only focus on the truly important scenes. Pictures show all the details my brain sees that are important, without all the details that shouldn’t matter.

As the gunshot sounds I begin snapping away. This moment is perfect. This moment ends in tears. Honestly I don’t know why. I ask my daughter what’s wrong and she said she finished last. My camera didn’t show me that. It wasn’t important. We briefly talked and miraculously she recovered. She recovers so well she leaves right in the middle of my inspirational parenting monologue. I look over and see they are serving their lunch. Right, it was food, not my parenting monologue. Well it achieved the desired result, I’ll consider that a win.

A few hours later I leisurely swing on the porch and wait for the bus to pull up. It rumbles to a stop and one happy kid bounds up the driveway, then another, and then we have an unhappy kid. Oh no. I ask my daughter what is wrong.

She tearfully replied, “I didn’t get a ribbon. Most of the people on our team got a ribbon and I didn’t. I got eighth in my events.”

I tell her genuinely, “That’s ok. I don’t like the number eight. It’s an even number and I don’t like even numbers, they bother me. I would’ve preferred ninth but I’ll take eighth this time.”

She’s appreciative of my eccentricity and cracks a small smile then says, “I didn’t win.”

“That depends on how you see winning. You tried out for the team, you made the team, you ran against 8 of the best runners in the school system, you had fun with your friends, I got to spend time with you, and you enjoyed a day away from school. That sounds like winning to me.” She perks up and agrees with me.

Later that evening she asks if I can wash her track shirt. She is proud of it and wants to know if she can wear it to school tomorrow. I am so tired. I tell her no, she just wore it. She looks a little sad, but says okay and goes to bed. I did wash her shirt. I hang it on a coat hanger in her room with a note on it.

Words never make as much sense coming out of my mouth as they do in my head.  Writing is important because my writing says in a series of letters what my brain could never get out of my mouth in a series of sounds. The next morning my brown-haired, beautiful, freckled daughter would come around the corner smiling radiantly, a bounce in her step, and wrap her arms around me. She says, “I love your smile too Mommy.” The ONE thing I just HAD to see, that smile.  

 

Gumdrops & Milk duds

What does parent child communication look  21st century?

 Gumdrops and milk duds of course.

Standing in the Gap

While sitting in the recliner, holding Trouble, and breathing in the intoxicating smell of his hair I heard Milk Man say, “You should write about what a great mom you are.”

I looked at him incredulously and spontaneously interrogated him, “Why in the world would I do that? Who does that?”

Even in disbelief I saw a wealth of emotion in his eyes. Love, respect, and adoration were the few I could identify in what was obviously a sea of feelings. I quickly dismissed the idea as self-absorbed and narcissistic therefore nowhere in the realm of my writing genre, not to mention my character.

During occupational therapy with our autistic child I was trying to soak up as much knowledge as possible to help her at home while trying to feed baby at the same time. I managed to miss his mouth at least every other spoonful due to either his inattention or mine. The occupational therapist looked at me and asked quizzically, “Does she like to play in the mud?”

“She loves it. I don’t let her much though. When you have 4 that ends up being a mudslide, in the house. Why? Would that help her?” I asked, eager to try anything to ease her sensory processing disorder especially when the substance is free and we possess an abundance of it.

Nonchalantly she answered, “No. I just have two kids and they bring in a lot of dirt. I couldn’t imagine what it would be like with four. I couldn’t do it.” As she stared off into the distance I could see her picturing the mess currently residing in her home then multiplying that. I didn’t need to think of mine. It’s seared into my brain, always.

I often get those statements from just about everyone I meet…everywhere…all the time. I don’t know how you do it. I couldn’t do it. Bless you. You sure have your hands full.  I can’t believe you take 4 kids to the store. I can’t imagine why you take 4 kids to the store!

As with all my writing these events led to the inspiration to write. Maybe people aren’t just flabbergasted, maybe they actually wonder. The answer can be found in a conversation I had with my 10 year old daughter on a drive to the store one day. She asked me how she would know what God’s purpose was for her life.

Reflecting back on my own 36 year search for purpose I advised her, “You should ask him. Usually it’s nothing you had planned.”

“What do you mean?”

“Well, I went to school to be a social worker and I did that for a while. Daddy and I decided to have a baby and God gave us you. Later we decided to have another baby and God gave us two. Daddy and I decided we were done. Then God said, ‘Except for this one.’ We were both scared. Each time we had a child we had new fears and new concerns. We also had new blessings, new hopes, and another purpose. I have learned so many things about myself. I am a writer, a photographer, an artist, and a loner. I’m funny, brilliant, beautiful, and strong. I am anxious, moody, obsessive, and a perfectionist. There are so many things I want to see and do in my lifetime, but there’s only one thing that I know if I didn’t do it before I die my life would’ve been wasted. That’s being a mom. It’s a small part of all the things that I am, but it is my greatest purpose. I didn’t always accept it willingly, trusting God fully, still don’t, but I know that this is my purpose.”

That explains why I do what I do. As for the most common question,  “How I do it?”

My dad once told me, “Your job as a parent in this world today is so much more difficult than mine ever was. Keeping them safe from the internet, bad influences, and drugs. We didn’t have to worry as much.” The secret to purposefully parenting any number of kids is not found on Pinterest, in name brand clothes and technology, nor in aggressive, competitive education and sports. It’s not in how big, clean, or expensive your home is. It’s not about awards to put on Facebook, though we have those. It’s not about who had the most exciting expensive vacation. It’s not about whether a 7 year old has an iPhone.  It’s not about participation trophies or first place trophies.  It’s really quite simple.It’s about the message through the gap.

When it comes to friends, feelings, drugs, sex, media, music, internet, sports, school, challenges, needs, and wants I stand in the gap between our kids and the world. Kids are amazing. They will find their path. Yes, they need some reminders not to kill themselves or each other, positive reinforcements, and consequences. More than once our kids have come home to nothing in their rooms but a bed. They know you mean business when they only have a bed and have to earn back everything from toys to posters. We don’t hide the world from our kids. You better be the first one to talk to your kids about sex, drugs, alcohol, and the internet because if you aren’t you can be assured they probably won’t get the message you want them to. I give my kids as much room to be themselves the way God made them, to grow the way God intended, to learn the way God has planned. Even when it hurts. I give them that room then I stand in the gap between what the world throws at them and the purpose God gave me to make sure in the gap between the world and my child the world’s message is filtered through God’s love. Just stand in the gap, that’s how I do it.

(Featured picture courtesy of our 10 year old photographer. I love seeing her world through her eyes. She has real photography talent.)

Fair trade agreement

I asked the oldest child if she expected me to help her study when she’s away at college, living in her own apartment. Her reply, “WAIT! I have to live in my own apartment?!?! I wanna live here until it’s time to move into my own home.” Soooooo…I think I’ll  move into my own apartment until it’s time for it to move into it’s own home.

Nobody Puts Baby in the Corner

The feelings of fear in the room were palpable.  All 4 children and I sat in the clean, sterile exam room of the pediatrician’s office as she did an exam on the baby and determined he needed another round of a different antibiotic. I securely strapped the baby back into his car seat, moved him into the corner out of the danger of the flailing, uncoordinated limbs, and gave him his bottle.

It was now Tristan’s turn. He silently climbed up onto the exam table and diligently followed the doctor’s instructions as she performed his exam. While listening to his chest intently she asked him,”Are you nervous?”

He quietly shook his head no and the doctor turned to me adding, “His heart rate is a little fast.”

She looked through his chart and told us,”I’ve been treating you for an infection since December, so today you are going to get an X-ray.”

She left and the X-ray tech took Tristan off to the have his X-ray done. He never spoke, just followed her as if walking the green mile. While we waited, I silently pondered to myself, after having every child, Milkman, and myself on antibiotics since Dec. 22, why schools allow children in the doors without checking for temperatures, sneezing, vomiting, and coughing before being allowed to attend school that day? I daydreamed about inventing a device similar to metal detectors at the doors of every school, a contagion protector! When it goes off the contagion filled child is denied entry to said school.  In the midst of my ideal world where health takes precedence over attendance and parents don’t send kids to school knowing they are sick, Tristan happily bounds in the door with a smile and says to his twin sister, “You lied!!! There was no blood!!!” He gave her a huge hug and declared,”It’s okay. I love you, but there was no blood!!!” That explained the rapid heart rate. Fear of impending blood loss has a way of doing that.

He then began explaining the procedure to his 10 year old sister loudly enough for all the staff and patients of the practice to take note. “There was a dalmation over my winkie, and then I stood there, and I could see my burp, AND I have a fart coming!”

She looked at him with abundant amusement and corrected him, “You mean 101 dalmations?” She’s had an X-ray before, so I suppose she is familiar with the protective gear that’s used.

“Yeah, that.”

The doctor returns and tell us his sinuses are blocked and he has bronchitis. I curiously asked her if you can see bronchitis on an x-ray. She began explaining it then stopped and offered, “Do you want to see it?” We all leave the exam room and examine the x-ray intensely on the computer. We see his bronchitis, blocked sinuses, burp, and his future fart. In the distance I hear a familiar protest. “Oh no!!! We left the baby in the corner!”

Through My Eyes

“He called me a loser, fat, stupid, and he looked at me and said, ‘F*** you’. He said I was weird like Sadie.”

My 10 year old daughter’s words and tears horrified me. So much came into perspective for me at this point. This explained the moodiness, crying, and skipping meals. It took every ounce of responsible parenting in my body to contain the outrage that flooded my body. Some kid was saying all these things and making fun of my child with autism too? What parent raises a child like that? What father raises a son to treat girls or anyone that way? I, of course, contacted the school. The kid continues to bully my child and other children to this day. It feels as though in the school system the bully is protected and not the bullied. The bully’s parents weren’t told. My child said she was blamed by the school for some of the bullying she endured and that the school believed the bullies when they lied and said the didn’t say something about her sister. Yes, there are multiple bullies, boys and girls.

When I look at my child I see a beautiful girl, inside and out. I see an intelligent child who always gets great grades. She’s never been fat. I just can’t fathom where this hateful behavior comes from in a child. Whether I understand the bullies at the school or the school system’s lack of response doesn’t matter. I have some parenting to do.

While driving my kids on a beautiful day I asked Kasey, “If someone was passing a note that said, ‘Kasey is so short’ would that bother you?”

With near amusement she relied, “No.”

“Why not?” I asked her.

“It’s not true. I’m not short.”

“Right. You don’t believe it, so it doesn’t bother you. That tells me that some part of you believes you are a loser. Why do believe you are a loser?”

She looks out the window at the passing scenery and mutters, “I don’t know.”

“Why don’t you tell me someone in your class who you believe is not a loser?”

“Well, like Lucy (names changed for privacy).”

“What is it about Lucy that makes her not a loser?”

“She can do gymnastics and dance. She’s a good friend and she’s smart. She’s a great actor. She’s  also pretty.”

“Okay, let’s start with that. Last year in your class you won the class best friend award voted by your class as being everyone’s friend. So are you a good friend?”

“Yes.”

“Okay. Do you get good grades?”

“Yes. I don’t always get 100’s, but yeah I do.”

“So you are smart or you couldn’t get good grades.”

“Yes.”

“When you were in the play did everyone tell you what a great job you did?”

“Yes.”

“Do you think that many people would tell you that if you didn’t do well?”

“No.”

“You are pretty. You are pretty in the most important way possible. On the inside, just like Lucy. Y’all are both sweet, thoughtful, kind, and caring. Both of you are pretty on the outside, but that doesn’t matter as much as being pretty on the inside. Can you agree with that?”

“Yes, but she can do gymnastics and dance. She’s great at it.”

“That’s absolutely wonderful. Does she play soccer?”

“No, she doesn’t know how.”

“Okay,  you do know how to play soccer and you’re pretty great at playing soccer. Does that make Lucy a loser because she doesn’t play soccer?”

“No, of course not.”

“Right, just because you have different talents than someone else doesn’t mean you are better than them or that they are better than you. Can you tell me, ‘I’m not a loser?'”

“I’m not a loser.”

“Tell me someone else who is not a loser?”

“You.”

“ME?!?!?” I really wasn’t expecting that response. You probably could’ve knocked me over with a feather. Never did I envision a day when I, the consummate underdog and black sheep, was the bar by which someone measured their own worth. Then again I was never a mother until God blessed us with this child. So I try to gather my composure, hide my shock, and continue on my parenting mission. “Kasey, what do I do that makes me not a loser?”

“You are an amazing cook and all I can cook is macaroni. You are the best soccer player, the best actor, the best artist, you are so smart. You went to college. You have a MASTER’S degree! You have 4 kids and you are still the best mom.”

Shocked, I think to myself we must be grading on some kind of curve here. “Kasey I’m 36. I don’t think you should judge your talents at 10, by mine at 36. I’ve had a little more practice. At 10 I couldn’t even make macaroni, nor did I want to. I was not the best soccer player, I just played my best. I wasn’t the best artist. I’ve learned a lot about art the more I did art. I’m a good actor because I’ve had to act my whole life. I don’t understand how people really talk to each other and act around each other so I acted. You are probably much more talented than me because you actually understand how to be social. I also did not have a master’s degree or 4 kids at age 10. Never judge your worth by anyone else’s, but definitely don’t judge it by someone who’s had 26 more years of life to fail and learn from it.”

“I guess you’re right.”

“Of course I am. I have a master’s degree remember. That means I mastered being right. Now about being fat. Has the doctor ever said you were overweight or that there was  anything wrong with your weight?”

“No.”

“She would have if there was any concern over your weight. Also you need to understand fat is not what someone is. It’s not part of who you are.”

Slightly confused she asked, “What do you mean?”

“Your eye color is part of how God made you. You can wear colored contacts, but you will never be able to change your actual eye color. Your hair color, it can be dyed but if the stores ran out of dye you can not actually change your hair color. You can’t make yourself permanently taller or shorter. Those things are uniquely you. Your weight over your lifetime will change. When you grow it changes. When you are more or less active it changes. Having a baby changes it. Weight is not part of who you are but more a part of what is going on at the time and it can always be changed so it’s not part of how God made you. You know I’ve lost and gained weight even over the ten years you’ve been alive. Did that make me a better or worse person? ”

“No. You’ve always been a great person. That didn’t change anything about you.”

“Ok, name some great people for me.”

She lists a long string of people.

“Those people are all different weights. Does that change who they are as people? Does it make them good or bad?”

“No.”

“It’s important to eat healthy and exercise, but weight is not who you are since you can change it. Now can you tell me, ‘I’m not a loser, I am not stupid, and I’m not weird or fat, but if I was that would be okay because it doesn’t make me a bad person?”

“I’m not a loser, I am not stupid, and I’m not weird or fat, and if I was that would be okay because it doesn’t make me a bad person.”

Dear Children,

I can’t go out into the world for you and shield you from all the mean people, nor would I want to cheat you out of that learning and growing experience. Ok, truth be told I really would want to, but I won’t. If I could do anything I would give you the ability to see yourselves through my eyes. If you could only do that then you would never doubt your beauty, worth, intellect, or value. God didn’t make you perfect just like He didn’t make me perfect. He did, however, make you perfectly. He made your strengths yours for a reason. He made your challenges yours for a reason. Never let anyone make you question how God made you and never forget your Mom and Dad don’t question why God made each one of you who you are, we only thank Him that he did. We love you always.

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Bueller?…Bueller?

Ring, ring, ring. Why does the phone only ring when you are going potty, in the shower, during nap time, or during dinner?
“I can’t answer you right now!”
The baby looks at me, then around at the bathroom walls. ‘Who is she talking to? Milk Man?’
Next my cellphone rings. “Dang, that’s someone that knows my cellphone number too. It’s the school.” Trouble is looking toward the singing from the kitchen. I rush to check the phone and my fears are confirmed. It’s ‘THE SCHOOL.’ …I hastily call them back and find out Sadie’s tummy hurts. I talk to her and I give her my illness litmus test, “You know if you are sick and need to come home you have to take a nap.”
She replies,”K.”
Dang, she passed the test. I notify the school that it may take a minute, Trouble and I were enjoying a pajama day so now I must actually put on undergarments. They know me well there. I’m sure that came as no surprise. I decided to put clothes on the baby. They baby decided to play elephant and make me a stinky diaper that rivals anything you have ever seen or smelled at the zoo. All the way up his back and this couldn’t be more amusing to him which means he’s gonna giggle and roll around in it. After giving him a baby wipe bath and dressing him, we are off. The school is a few miles away but surprise, there is road construction which is going to take 20 minutes one way. Trouble and I FINALLY arrive at the school, check out the child who may soon succumb to dysentery, and start buckling her seatbelt when she looks at me and states,”My friends might miss me.They are playing with blocks. I think I made a mistake, I need to check back in.” OH, HECK NO FERRIS!