Tag Archives: autism

In the Ordinary

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I believe that we must look for the amazing within the ordinary. Seek in the low, humble places. It finds us there. I think this can be especially true for parents of children with unique needs.

Our son is autistic. One of the tenants of an autistic personality can be the inability to interpret other’s emotions, words, body language, etc. This can lead to moments of embarrassment and misunderstanding, but most importantly, it makes navigating social circles exceptionally difficult for the child. This has been true with our son. In the midst of wading through social interactions that appear immediately obvious to me, he has posed questions countless times, “Mom, was that rude? Mom, is that funny? Mom, is that mean? Mom, are you mad?” Over time, with instruction, reinforcement, social stories, pictures and lots and lots of “get yer sleeves rolled up we’re goin’ out in the big ole world to practice this,” he has grown to understand more and more. Social cues, nuances, inuendo may not come instinctively for him, but my hope is that through all of this effort, eventually these things will become second nature. This effort can be abundantly exhausting, but I will never, never, ever give up. You see, I’m learning too, learning to see the treasures.

It had been the proverbial long day of a parent. The tired, spent, frustrated, doubting, sometimes guilt-ridden, I can’t take another minute, kind of day. And there I was. Sitting in the ordinary, inhaling the long awaited quiet. From the shadows I heard his feet. Shuffling, tipsy, drunk with slumber. He came up behind me and reached for my arm. Just as I was to drop my head, his sweet words filled my heart and soul. “Mommy, I was trying so hard to go to sleep and I really was trying, but I just wanted to say that I love you.” He leaned in hard and wrapped his arms around my neck, like Summer nectar, thick and lingering. He’s changed me. I don’t fight it anymore. I await the ordinary and anticipate the magnificence of my Lord who loves me in these low, humble places. I find Him there.

I Don’t Got This…

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It’s no secret this parenting thing is, at times, akin to a tight rope act across Manhattan. Occasionally this parenting thing is going so swimmingly that I think I could run across a tight rope over Manhattan. But, mostly, it’s just a steady effort in juggling, balancing and cleaning up. And crow, I eat a lot of it.

One of the areas I struggle and fail at the most as a mom is being way too quick to accuse, blame and condemn my kids only to learn it was a misunderstanding or worse, they did nothing wrong at all. While these occurrences get fewer as I get wiser, more schooled, I wonder if I will ever master the keen ability to not jump to conclusions.

Yesterday evening we took S to her first soccer practice. The practice is held at a school and about four other teams hold practice at the same time. Adjacent to the large field is the school playground. We’re familiar with this school as S had her practices here last year as well.

Last year I decided to really throw caution to the wind and loosen, not cut, just loosen the apron strings with L and allowed him to go to the adjacent playground and play…with a friend. I would check on him no more than every 5 seconds fully prepared to thwart danger should it arise. I felt so proud of myself for really giving him this pseudo freedom to play with friends several yards away from my person! Look at me not being a helicopter parent!!!

Fast forward to yesterday evening. Apparently I had matured significantly in my views on “letting go” in a years’ time because when we arrived at the school, L asked if he could go to the playground…alone. I said “yes!” So, off he went, alone, to the adjacent playground and I was only 60 seconds behind him in pursuit. Totally hands-off parenting here! As I followed L, at a very considerable distance, he hopped onto the play structure and immediately made friends with three other kids. I stood there, easily 5 yards away, nothing at all like a helicopter parent. In fact, if something bad were to happen and the news crews showed up, they’d have nothing on me! I would not make headlines for being a bad parent, no chance.

As I stood not too closely, a mother arrived with four energetic boys. She was on her phone and seemed in a bit of a puzzle. Her boys quickly joined the others in going down the slide while their mother talked out, “Oh geez, your practice was cancelled, they sent an email at 1:30 I just now got it…we drove all the way here…” The boys had no concern for this development and clamored down the slide on top of each other. As they reached the bottom one boy yelled at his brother, “BUTT WIPE!” Now, I did giggle, but I didn’t let them see me giggle.

I could see S’s practice starting in the adjacent field, so I told L I was going to walk over and sit on the grass to watch her. I said, “check in with me in a bit ok?”

So there I was, watching S play soccer while my 8 ½ year old son played independently with his new found friends, and it totally doesn’t count that I could hear and see them…trust me, he was soooo on his own.

As practice continued, within 10 minutes I hear, “Hey mom!” I look up and there’s my boy. “Just checking in.” Joy flooded my heart to see that he had survived and not been snatched up by a crazy child abductor right in front of me. “Can I go play more?” “Sure, check in again, ok?”

Practice carried on and L checked in a few times. C was on his way to catch the last bit of practice. As the girls were winding down drills, I could hear a small group coming from the playground toward me. I looked up and it was the frazzled mom with the BUTT WIPE! Brothers. I could hear her chatting louder than need be since we were all within ear shot, “NO, we’re leaving the playground because that kid is being really obnoxious!” I look over and she’s walking. toward. me. Right up to ME! For all to hear, in a voice far louder than required, she began her public protest, “Um, do you have a little boy in a grey t-shirt and shorts?” I reply, “Yes, I do.” She continues, “Yeah, um, he is being reeeally mean to the other kids… well, he’s being really rude, well, rude to me.” The humiliation and mortification shot me into the air like a breaching whale, “Oh my gosh! I’m so very sorry!!” I began my march to my son in the grey t-shirt to give him the business for being so “mean” and “rude!” She wasn’t done, “Ya know, if my kids were being rude I would want to know, so…”

With every parent’s eyes on me, I kept walking, no time for questions, details or evidence…I have a boy to berate! “Sorry!” She offered insincerely as I hustled away. Muttering under my breath, “I am not that parent, I am not that parent…I try so hard…I finally let him play alone and this is what he does!?”

I arrived on the adjacent playground that is a whopping ten yards away and I am hot! Man, am, I gonna give it to him! I fully expected to arrive on the blacktop to find my “mean” son “rudely” bossing the other children into submission. Only I didn’t. There he was, with two other kiddos, giggling and jumping on the giant US map painted on the pavement. “Here’s my state!” he cheered as they ran all over the country. Even so, my eyes deceived me, clearly he had done something very wrong. After all, it was an adult, another parent, a certified mother who delivered the news of my son’s “obnoxious, mean and rude” behavior.

“Hi mom!” L giggled as he saw me approach. Announcing his entire name I snipped, “you come over here right now!” The other two previously jubilant kids looked at me shocked and ran away…perhaps because I was “mean” and “rude.” L came over with a look of utter confusion on his face, but I didn’t bother to read the signs, I had a rebuke to deliver, I was determined to swiftly eradicate every ounce of “mean and “rude” from his body! “Are you being mean to the other kids?” His eyes grew wide and his face white, he looked me dead in the eye and said, “What? No!” He can’t fool me, I thought. “L, don’t lie to me, are you being mean and rude to others?” His face was covered in a daze, “mom, no, we’re having fun…” I lobbed this clincher, “Then why would another mom come over to me and ask if I had a son in a grey t-shirt who was being really rude!?” Boom! Wiggle out of that, you heathen! Without hesitation he said, “Cuz she’s an idiot!?” See, I knew it! There it is folks a big, fat, wad of rude right there in my face!

Full name again, “You do not speak to an adult like that! Were you rude to her? Were you bossy!?” His little shoulders slumped. He buried his face in his play stained hands and began to sob. He was scared, he was confused and he was remorseful for something he hadn’t entirely done. Even so, I didn’t believe him. I marched him to the car propelled by humiliation and pride fully convinced I would mine the real horrid story right out of him! I would reveal the truth yet! Then, I closed the deal with this gem of grace, love and compassion, “Don’t even open your mouth. Don’t say another word!”

In the car I told him I wanted the full story from beginning to end. With tears rolling down his face he said, “I promise you I was not rude or mean to any of the kids! That lady told us to stop screaming on the slide and I was confused because everyone was screaming and she came over to me and so I told her I didn’t have to listen to her because I didn’t know her…I didn’t have to talk to her… she wasn’t someone I knew or a police officer like you said!” My heart began to sink, low, low, low. The “truth” I was convinced I knew, began to fall apart. He continued, “She said, ‘you are a brat and I’m going to find your parents right now!’ and I told her she wouldn’t find my parents and I didn’t have to talk to her because I didn’t know her.”

Tears welled in my eyes…I felt like a complete, hopeless, piece of rotten you know what. That I would care so much about what the other parents thought of me and my “rude, mean” kid, that I would allow my pride to grow so unmanageable, I completely missed the truth! My son, my Autistic son, who takes so many lessons very, very literally was simply repeating, in his own words, what I myself had instructed him to do. “Don’t talk to strangers, if a stranger approaches you and you don’t feel comfortable, you don’t have to say a word, just find an adult you know.” Those words, that lesson, the one we have had a thousand times…the one he just took so very literally, causing this tremendous misunderstanding.

“L, honey, you simply cannot talk back to any adult like that. Though I understand why you said it, she thought it was very rude. It was disrespectful to talk back to her. Whenever there is a parent or teacher on the playground and they tell you to stop screaming you do so, ok?”

Barely able to catch his breath, “I’m… so… sorry…. mom. I shouldn’t have said that… to her! God, why did you make me this way? I hate this, I’m not normal, I’m not! Why do I say things I don’t mean to say!?”

C arrived to find us both bawling in the swagger wagon. I, the epitome of parenting excellence, leveled to a piece of dog excrement. My son, the loving, funny, friend to everyone kid, leveled to an insecure mess who questioned his very existence. Fan-fricken-tastic!

C went to retrieve S from practice and I drove home with L. I cried the entire way. I felt the weight of shame, again, and though a familiar friend, it suffocated and choked and burned every inside corner. I was b.r.o.k.e.n.

Once home, L went to his room and I ran to my closet, shut the door and fell to the floor in hysterical sobs. For the woman who hates drama, it was exceedingly dramatic. I cried out, “Lord, I have completely ruined this again, this mother bit, I can’t do it, I don’t got it!!!”

As I prayed, I felt His Spirit wash over me and heard a whisper in a still. small. voice. “But, she’s the mom of the BUTT WIPE! Brothers. She’s the frazzled mom who was late to a soccer practice that had been cancelled four hours prior. She don’t got this either.”

Now, is it possible there is more to the story? Of course. Was what L said to her ok? No, and he was given a very clear lesson on why, again. Was what he said disrespectful? Yes, and he was given a very clear lesson on why, again. Do I condone or defend my kids being “rude,” “mean,” or disrespectful? Absolutely not and L will apologize to her personally when we see her again. Does L always understand what “rude,” “mean,” and “disrespectful” look like? Not even close. Are other people going to see this and know why? Nope. Do people care that undesirable behavior in a child is not always the result of bad parenting, doesn’t always mean a child is a “brat”? Sadly, they don’t. And though I care about that very much, I need not care about that so much. It bothers me greatly, but I can’t change it, it’s too big and heavy and I can’t fix it. I just can’t.

I’ve come to learn a bit about this thing called “grace.” Though foreign to me in sooo many ways, Christ is showing it to me over and over and over (again). It’s this “grace” that I need so desperately when I blow it as a mom, a wife, a person. It’s this “grace” I need to get better at, a lot better. It’s this “grace” that I so freely give all the other children, even the BUTT WIPE! Brothers, but fail so often to give my own. It’s this “grace” that I’m going to give the frazzled, not-minding-her-own-business mom to whom I’d like to give a piece of my mind, because I am carnal and I am proud and I am broken and I’m just. like. her. It’s this “grace.” Just, grace.

There came a little knock on my closet door. L stood on the other side with eyes swollen tight from tears. “Mom, I’m so sorry, you don’t have to accept my apology…” I stopped him quick, “L, my sweet boy, I absolutely accept your apology and I forgive you completely and I love you so, so big!” He melted into me, and I held him for a long, long spell.

And so it is, a perfectly imperfect portrait of parenting imperfection. Doubled up, rung out, hung to dry. When I woke today, there it was, still. But, I’m covered by the mercy of the One who created me, the One who created L and it is this mercy, this grace, which gives me just enough to hopefully, be merciful too. An imperfectly, merciful, grace-giver.

No Offense…

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I was deep in sweet, sweet slumber, living a life divine. (I assume C was too as his buzz saw melody wove through my dream.) Then it happened. Just as Ragnar Lothbrok took the broom from my hand and began to clean my kitchen floor, I was jolted by our sons commanding voice. Without a hint of restraint or pre-dawn volume control, he delivered a public health address with the enthusiasm of an auctioneer on fire. “Dad, Mom!! I just saw this commercial.This guy is amazing.It’s a workout-T25.He gets you in good shape and you lose lots of weight.” C stirs with a grumble. I open my eyes and bid adeu to Ragnar. Silence. As we lie motionless, in desperate hope of L’s departure and a few more minutes of shut-eye, he tosses out this lovely zinger, “This is where the no offense part comes in…”

Challengers

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Under sunny skies, we arrived at the field for L’s first baseball game of the season. As we gathered, so did the clouds and within minutes the wind descended. Certain the game would be called, I didn’t bother running to the car to get a bigger jacket. As The Challengers took the field and the fans took their seats, Mother Nature started her show. The first batter took position and despite the wind and pounding rain, he took half a dozen pitches before hitting the ball with all his might, launching it all of a few yards. Then, a smile launched across his face as he ran to base as fast as his legs would carry. As he met first, the stand erupted, not unlike an MLB game showcasing the sports’ finest. Then another batter, this one in pink and pigtails all of three feet tall. Her glasses glistened with raindrops and so did her smile. A dozen pitches in, another hit!  She was off, her pigtails flailing in tow and she reached first to the roar of the crowd. She took first like a boss, but she couldn’t hide her grin. Another batter. He was wheeled up to home plate by his mother, bundled in his wheelchair to keep warm. Mom spun him around to face the plate and he was exploding with excitement. His smile reached from East to West and captured the crowd. The pitcher threw a few, too high, but this ringer swung for the fence. Then, with his mother’s assistance, he connected bat to ball. The crowd stood to their feet as his mother ran pushing him to first, he was laughing all the way, arms in the air.

In wind and driving rain, not two, but three teams took the field today.  As one dugout completed its round and the teams took their new positions, my eyes traced across the outfield. Not the usual nine, but fifteen or more. Fathers. Mothers, Sisters, Brothers all on the same team. One proud father held his body over his son in a wheelchair to shield him from the rain, mitt-clad left hand outstretched in hopes of catching a fly. Another mother, drenched to the core, held her son in her arms as he clapped his fist into the leather, confident he would catch the work of the next heavy hitter. A dad on second, with his sight impaired daughter and clad in Everest approved rain gear, leaned in hard ready to take third. A young man on first, all of 6 feet tall, laughing and talking smack to his teammate who just giggled in jest. What I didn’t see were egos.  I didn’t see labels, or diagnoses or conditions. Not a judgment to be found. No fear, no doubt, no bad attitude anywhere in the yard. Just Challengers. Just fighters, survivors, never give up-ers. Just mountain climbing, battle winning, limitation smashing soldiers standing together in solidarity, all so the other could crack the bat and smoke the leather. And I forgot everything. I forgot I was soaked to the skin. I forgot I was shaking. I forgot I ever had a care in my whole blessed life. I was watching heroes.

As the weather reached its fiercest, my son took position behind home. He tapped the bat to the plate and my eyes welled, my face grew warm. The crowd on their feet. Three swings in, he connected and rocketed to first. He stomped that plate with a celebratory leap. Then he turned, not to the coach whom he also calls daddy, but to me, in the stands. Through tears, and ringing ears from the yells of the crowd, I could see him wave wildly and give me a thumbs up. Thumbs up, bubby, thumbs up indeed.  And to you, Challengers, thumbs up, that you have taught us all

Happy Birthday Bubby

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So our little man is 8 today. Was going through old photos last night after he went to bed. I was overcome. Look at us, this little family, carving out our path. When S was born, cliché as it may be, I changed. A lot. More change than I had bargained for. Suddenly I saw the entire world so differently. I saw me differently. Reluctantly, I began to embrace the truth. None of this, not one bit, was about me. Sure enough, I would become someone new. Then when L was born, I understood why. God was preparing me for an incredible journey. L had a rough start from the moment he was born. I mean the very moment he was born and the doctor whisked his silent, grey little body to the ER nurses to be resuscitated. Then and there I knew. We had just been given the seemingly insurmountable task of defending our son from a condition whose name we had yet to know.

We never stopped fighting for answers. And it was, at times, a real fight. I’m talking, boots on, gloves off, I know I’m gonna be called a “b*tch” kind of fight. It meant standing firm in my gut instinct and rejecting the diagnoses of more than one prestigious doctor. It meant standing up to those who lacked compassion and were convinced we were crap parents and just had a “problem child.” It meant deflecting the ignorant judgments we received as parents, many of which came from tenured doctors and educators, folks who “should” have known better. It was an extremely lonely start to our journey, very isolating and at times desperately painful. Yet, by the grace of God and the unimaginable strength of my husband, we followed the golden thread. We didn’t stop. Because I knew in my heart. I just knew in my heart this force we were reckoning with had a name and, even if through mountains and fire, we would find it.

Seven years. After seven, tear-filled, end of our rope, hard fought, sleepless night, numerous incorrect diagnoses years, my instinct was confirmed. Autism. L is autistic. NOT Oppositional Defiant Disorder, NOT Bipolar, NOT Naughty Little Boy Syndrome. Autism. Autism Spectrum Disorder, ASD. On this spectrum, L falls on the High Functioning Autism portion. Or, Asperger’s Syndrome. (Which the DSM V no longer recognizes and I vehemently disagree, but that’s another post for another time.) Within a month he was also diagnosed with a tic disorder. Tics, like Tourette’s Syndrome Tics? Maybe… they don’t diagnose Tourette’s until a child has had symptoms without ceasing for over a year. We’re at the eleven month mark, still ticking away…we shall see.

(An aside: Frankly, I don’t care what we call these “conditions” my primary job is to ensure we are accurate in our diagnoses so that our son gets the best, most appropriate and effective treatment and education possible. I think we’re there now, for now. As most with ASD kiddos know, their needs ebb and flow and change with time. Which can be tricky in trying to stay on the same page as educators, therapists, doctors, etc. BUT, if the diagnoses is correct, you will at least be reading the same book. If you’re in a place currently where you don’t feel you’re on the same page, or reading from the same book as doctors, teachers, therapists, etc., put that puppy back on the shelf and keep searching!)

Had someone told me eight years ago I would have a son with Autism and tics, in my then tiny little mind, I would have crumbled. Out of fear and ignorance, I’d have caved in. But here we are, eight years in and I wouldn’t change a damn thing. We’ve finally come up for air. We’ve crossed this battle line to find God’s blessings are richer than could have ever been imagined. How He makes it ALL work together for good, I can’t know. We’re in a groove, in the zone. We’re rockin’ these quirks, we’re tickin’ all over town and we’re making it count!

These kinds of battles make a person who they are meant to be. My heart has broken a thousand times, only to grow bigger in order to accommodate the increasing love I have for these exceptional children with special needs. In our house we call them “differences” and we’ve all got ‘em. I’m of the humble mind that our differences, regardless of origin, don’t require special treatment and labels as much as they require compassion, grace and empathy. I’m not so naïve as to think everyone is going to understand my son, or have the willingness to try. Heck, the reality is some people don’t care at all and we’re raising him accordingly. Fair enough. But, that doesn’t change my marching orders. I’m determined the fire we’ve walked through won’t be for naught. In our family, the choice is now clear. We can cower in a corner beneath this hand we’ve been dealt, hide in false shame and useless secrecy, OR, we can get up, keep on keepin’ on and go full kimono! Of course I came to this conclusion after cowering in a corner, hiding in false shame and useless secrecy.

If, in allowing others to see a glimpse into our life with Autism and Tics, we can help peel away the shroud of misinformation and foster the conversation that needs to happen in defense of these kiddos, then we’re in. We’re all in! I know this is not the best decision for all families living with ASD, how much one shares about their own experience with ASD is a very personal decision and to be respected without question. For our family, my earnest hope is that we can come within a shadows reach of emulating the compassion, grace and empathy that I see in these exceptional children. I hope we make it contagious! I hope we can spread the truth that not every tantrum you may see in the grocery store is a “spoiled child.” Not every melt down you witness is an “unruly brat.” Not every outburst you observe is a result of “bad parenting” or a “behavior problem.” I used to think so narrowly. Not anymore. My ignorance has been painfully replaced with compassion. And, for those who can’t make that switch, or are unwilling to understand, then perhaps we can all just respectfully agree their opinion of me or my child isn’t going to rank high on my expansive list of priorities.

I don’t pretend for a second to have all the answers, or any answers. I just know not everyone with an ASD is like Rain Man. He, I believe, is the exception. What I do know is when I meet a child with Autism, I’ve met one child with Autism. Each of them different from the rest, with their own unique place on this vast spectrum. Each with their own means of navigating through. I know that for every child, every adult, every family touched by Autism, there are as many ways to navigate through. I want to be teachable to all of them, all of these brilliant, ingenious, fearless ways of walking this road.

Funny, I was so eager to teach my children all about life in this big ole world. Little did I know, they would end up teaching me. I’m not who I was. By God’s grace and a healthy dose of humility, I am not who I was. I’m beholden for every single messy bit of it!