I knew as soon as I picked her up from the sitter's. Tears were welling up in her eyes and she was visibly shaken.
I loaded her little brother into his car seat, then helped her throw her violin into the back seat, and took a deep breath. I watched her in the rear view mirror as she buckled her seatbelt and simultaneously wiped the tears that now fell down her face.
"Lyric, you can do this" I said. But the words were hollow - even to me. The words came out of my mouth but my heart was crying out "there's NO WAY she can do this." She knew it too. And the tears fell even harder.
It was recital night. The junior high orchestra concert. And the very real possibility that my once fearless daughter would have a severe anxiety or panic attack in the middle of their performance. This was now our life. Challenge Lyric to take on new opportunities and then desperately hold our breath knowing that at any moment she could have a break down - a break down marked by sudden, terrified screeching and a panicked need to cling to any human remotely close to her. "The world is spinning!" "I can't feel my legs!" "Stop the spinning! MOM STOP THE SPINNING!". "Help me! Help me! Help me!"
Once, it happened in a movie theater with her dad. A single man. With a little girl. In the dark. Screaming for help. It happened another time during a fireworks display with her stepdad, my husband, Pat. Concerned passers by intervened. "Are you ok?" "Do you know him?"
We used to be able to predict when they might happen. As she reached her teenage years we were blindsided. At the mall. During a hair cut. At a graduation ceremony. Once she has a panic attack in any particular location or situation she forever fears returning there. In fact, a therapist explained to me that clinical panic disorder is when you "panic about having a panic attack".
Wonderful.
So when she had a panic attack in her bedroom over Christmas we couldn't get her to sleep in her own bed for over a month. Two Tylenol PMs (yes, I did) and a looooong night sitting by her bedside later and we successfully broke her "weirdness" (as she calls it). At least when it came to her bedroom. But we had won one of the battles. We would win more right?
So here we were. The night of her orchestra concert and she was fearing her own fear.
The last concert hadn't gone well. She was overwhelmed. Crowded into a sea of students. With music just a little too fast for her. People were watching her. She panicked. She managed to ride it out that night with discomfort only her dad and I would recognize, but the fear stuck with her.
So I spent the 15 minute drive home glancing in my rear view mirror as she visibly struggled to be brave. I had my own struggle. My mind told me she had to try. She had to show up to that concert. Take her place on the stage and give it her best shot. She knows the violin, I told myself. She does well in private lessons. (Lessons she's taken for nearly 2 years). She has orchestra class every day and has one-on-one lessons with the orchestra teacher once a week. She has performed solo for her 6th grade Christmas concert. And performed beautifully. She knows how to play the violin. And that mama voice deep inside me - the one that ignores a mom's heart and instills tough love - told me she had to do this. The world is not kind. She will not get breaks along the way. She has to learn how to face these fears, this anxiety, and work through it. When all along I wanted to take her home, take her in my arms, and cuddle her fears away.
"Mom?", she asked. "I really do try to run away from my fears, but they always chase me and catch me."
My heart broke. "I know sweetheart. I know."
"Can I have one of your magic pills when we get home?" she asked.
I smiled. "Yes, you can have a magic pill. That will help."
After the Fireworks Panic Attack (we give them names now - the Bleacher Panic Attack, the Family Picture Panic Attack, the Remember-the-Time-We-Were-Just-Walking Panic Attack) her dad and I took her to a physician whose own son has autism and severe anxiety. He was, and is, a God send. He started her on a low dose anti-anxiety med that we've since increased. It has helped her function day-to-day, but it hasn't prevented situational anxiety. Once, in desperation, I told her I had a magic pill that would help calm her. It was a vitamin. But the placebo effect worked. I prayed it would work again tonight.
It didn't. She cried as I did her hair. As she changed her clothes. As we loaded back up in the car again and headed towards the school. She sat next to me this time, and I held her hand.
"You can do this," I said. And then, in desperation, I resorted to bribery. "I'll buy you whatever Monster High doll you want. All you have to do is try. That's it. Just try."
She took a deep breath and I could see her willing herself to be strong. "Ok, Mom. I can do that. I'll try." And with that, she bounded out of the car towards her rehearsal room while I headed to the auditorium.
Fifteen minutes later, I watched from the balcony as her peers started practicing. The doors hadn't opened yet, but I had snuck in to make sure she was ok. I scanned the stage. One hundred students all dressed in white shirts and black pants. I looked from one violinist to the next. She was no where to be found. And then I saw her. Confused and tearful, she entered the auditorium. She still had her coat on. Her violin was still in its case. She had no idea where she was supposed to go. I watched helplessly from the balcony. The music from the dry run would have drowned out any attempts to call out to her and she was simply too far away. My stomach lurched.
Thankfully, a teacher or parent seemed to notice her confusion and helped guide her across the room. She was in shambles. She clumsily opened her case. She bumped into a couple students and then set up right in front of them - blocking them from reading their music. They scooted her aside, gave irritated looks to one another, and continued playing. And there she stood. Talking to herself. Shaking.
I called her dad. He was on his way.
"What would happen if she didn't perform?" I asked. We agreed that he would go back stage as soon as he arrived and talk to her.
And then the tears began to fall.
I thought of all the dance recitals where she had so courageously performed cartwheels and back bends and round offs. Tap routines and jazz dances. I thought of the little girl who fearlessly and joyfully ran into any gym daycare, Sunday School, or babysitter I threw at her. I thought about the times I had her play softball, take up bowling, horseback riding, summer camp, and art class.
I thought about how much I'd take back the days where autism was her biggest challenge because now I knew better. Now I knew that Lyric's autism was manageable. But this...this was terrifying and an altogether different level of concern. I literally had no idea how to help her and I was terrified that my little girl would start to fear the whole world.
But tonight she feared the stage.
Soon, her seventh grade class took their places. For a brief moment I was relieved. She was seated at the back row with a teacher. Then I saw her. Contorting her face. Shaking her legs. Frantically talking to herself. I saw the teacher try to help her set up....to no avail. She was having her own private argument.
I knew her enough to know what she was saying. "You can do this, Lyric. "Your family is watching you, Lyric." "But I can't do it! The room is spinning. My legs feel funny." "Don't be a baby, Lyric." And then desperately asking, "Please God make the spinning go away."
The orchestra started without her. One song. Then the next. All the while I helplessly watched my little girl battle her demons. Twisting and cavorting and fighting a torrent of tears. On stage.
I tearfully pleaded to her dad, please go get her off that stage. I didn't want her to see me so upset and I literally couldn't stop the tears from falling. I was crying for all the fear she must feel. For all the unknowns we had ahead of us. And for all the guilt I felt. I was failing my daughter and had no idea how to turn it around. And I was crying because my 13-year-old daughter wasn't worried about boys, and best friends, and One Direction. She wasn't worried about school dances, sleepovers, or Snapchat. She was fighting to navigate this crazy world through a lens none of us could ever understand. Now she was doing it without a map, without stability, and with insane fear choking her every breath.
Every single day the world puts a mountain at her doorstop and every single day, she has to climb that mountain in the fog ...while the rest of us romp and play on the straight and narrow pathway below her.
And so I cried. I cried for my beautiful girl and I cried for all the things I wish I could do for her - but knew I couldn't.
And yet, tomorrow would come and tomorrow I would fight again. Tomorrow I would be fine. As my dad always said, the sun will come out tomorrow. And I would meet my daughter at the bottom of that mountain and we would start the climb to the top. One brave, if not anxious, step at a time.
Lyric's Song
I never imagined that I'd one day be the mom to a child with autism and yet....here I am. Scared about what this will mean for my little girl, but blown away by her spirit! Lyric Kay is a special little girl with a very special view of the world. What a song she has to share with the world!
Friday, February 26, 2016
Sunday, May 6, 2012
Turning the World Upside Down
Lyric has been going to Kim's Dance in Moline, Illinois since she was 3-years-old. She started as a "Tumble Bear" - an adorable half hour of toddler tap, tumbling and tutus. Dance class for a child that young is almost always about the cute factor (and maybe a dream or two to mold a future cheerleader). But the class demonstrates real purpose. Just like the following years of dance & tumbling, Lyric had to practice listening, working as a group and of course, looking adorable.
Lyric has mastered all 3. And that right there is what's so remarkable. (Not the adorable part of course - she's always had that part perfected.)
But listening and group activity have never been Lyric's strong suit. For as long as I can remember, Lyric has preferred to isolate herself, avoid eye contact, and live in her own world. The rest of us have to "plug her back in" as I call it - bring her back into the real world and then, when she senses the world will allow her to retreat, she unplugs herself and skips happily back to her solitude.
Dance class is different. I don't know if it’s the music, the repetition, the support and encouragement she receives, or the dance moves, but Lyric has felt at home there.That's counter to what I would have expected and what I've seen with other endeavors. She isn't very graceful. She has a hard time following directional instruction (turn left, over here, step back, cross over - all mean nothing to her without context) and frankly, she's far behind in many of the skill sets.
But she keeps trying.
When Lyric was 3, 4, 5 years old she was literally terrified to be held upside down. (Even tilting in a downward direction or reaching down to pick something up while holding her, would send her into a panic). And for those of you without an autistic child, this terror is unlike anything you might see with most children. This isn't, for instance, a child's natural fear of dogs or bees. This is shear, unadulterated, down-to-the-bones kind of terror. (For some kids on the spectrum, it's the sound of a vacuum, the feel of certain textures, fire, the sound of a toilet flushing, etc.)
So to now see my daughter kick her legs up to an instructor to do a front walk over or to hold a handstand - even with help - is an accomplishment that in comparison, is likely well beyond the personal achievement of anyone else in her class.
Last year at Easter, Lyric's cousin Payton (same age) said he couldn't do a back bend. I saw Miss-Tune-Herself-Out jump up and proudly exclaim," I can do that!" before proudly demonstrating next to Payton while he struggled, but failed, to do one. It was the first time she had ever been able to do something someone else couldn't do. And left me determined to give her more of that.
Here's the secret. Whatever it is our children on the specturm might be trying...whatever challenge we put in front of them... they have to take it on in a safe, supportive - but firm environment. And that's what's made dance class so successful . Since day one, the staff at Kim's has understood Lyric would have to be taught differently. Not coddled. Patiently. Not special. She is forced to pay close attention to the many words she doesn't understand by attentively watching the steps - not just hearing the directions. The staff has further understood that expectations don't include becoming a gymnast - but that she keep trying. And the teachers there - many of them in high school - set a tone early on that she is respected. That her handstand is just as magnificent as the back flip next to her. And will be proudly displayed during her recital.
And you know what? Fellow students pick up on that. Let's be honest. She's charming but most kids think she's weird. She sings all the time. She says goofy things . She has a hard time following a conversation. She fake laughs when she thinks she's supposed to be laughing. She talks when she thinks she should be talking. And she tells jokes that aren't funny. (Knock! Knock! Who's there? Apple. Apple Who? Apple and Banana!) And yet, the other students in her dance classes don't seem to mind. They never roll their eyes. They wait patiently for her to finish her tumbling sets ( that are twice as slow as their own). They are friendly. They are accepting. They cheer her on.
And that's because its what they see from the teachers they admire most.
So when young children hear their parents or coaches complaining about the kid that shouldn't be playing . Or the child that is slowing down practice. Or the student that is holding up class . Guess what those children learn? I'm betting they don't learn tolerance and I'm betting that kids like Lyric aren't reaching the potential they could be if they would just be allowed to try. I'm not saying there isn't room for winning and losing - just recognizing that for children like Lyric, a patient, supportive and encouraging environment makes all the difference in the world. Even when that world is turned upside down.
It's Recital Day! Do your Best Sweet Girl!
Sunday, March 4, 2012
Life is Sweet on Planet Lyrica.
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| On Planet Lyrica, there is blue cotton candy ice cream at every meal and no wet wipes! |
It's remarkable to watch her mind process the contrast she sees in her own world and the one the "real world" offers. One day, she contemplated how Jesus spends his day.
"Mom, do you think Jesus gets bored?" I told her no, that I thought he had a lot of work to do answering our prayers.
She replied, "He should at least have a swing, Mom. If I was Jesus, I'd put a swing in the clouds and answer prayers while I swing." Wow. My daughter was offering ideas to make heaven more fun!
And it's deeply, deeply rooted. A few years ago, during an unexpected hospital stay, she was treated with a high dose of antiseizure medication. The nurses warned me that she might experience terrifying hallucinations. "Most children think bugs and snakes are crawling on them or that monsters are in the room," they told me.
That evening, I braced for the worst. How in the world could I protect her from imaginary spiders on her skin? How could I convince her the monsters she would see are not real? My worries were unfounded. No bugs or monsters in our room. Oh no. Lyric spent the evening trying to catch invisible butterflies and giggled repeatedly at the show she said Shrek was performing at the food of the bed.
Several years ago I went to an amusement park with a friend and his two young daughters. The two girls whined and cried and begged at every turn. "I want cotton candy!" "I wanna go on that ride!" "Let's play that game!" "That's not fair - she got a bigger ice cream cone than me!" Lyric simply skipped along - delighted with every stop and new surprise around the bend. My friend made an observation about how blissful Lyric's world must be. While his daughters were constantly looking ahead at what was next, Lyric lived in the moment - happy with whatever life presented her.
Most of the time, this beautiful, simple view of the world is an incredible blessing. But as her parent, it also has some scary implications. Could there be anyone more vulnerable? I've had several conversations with her the past several years about "stranger danger". These discussions usually end with Lyric scolding me. "There's NO such thing as criminals Mom!" (Sigh.)
There's no parenting manual to guide any of us on how to introduce our children to the "real" world. How do any of us prepare our kids for the fact that sometimes the people that want to hurt them aren't strangers at all - but people they know? How do we prepare them for illnesses and death, wars and fighting? How do explain things like school shootings? How do we prepare them for "mean girls", or bullies or decisions that are unfair?
To this day, one of Lyric's favorite games is to hide under a blanket in the living room, then call out for Pat or I. "Mommy, Pat, there's a suuuurrrpprisssse for you!!" When either of us enter the room, we exclaim with delight that Santa must have left an extra present. And as we unwrap our sweet girl from the blanket, she squeals with delight every single time. "I surprised you, Mommy!" or "I tricked you, Pat!" and gives us a big hug. I don't have the heart to tell her we know exactly what's under the blanket - that at the age of nearly 10 years old, she should know that we can see her elbows or hear her giggling or in fact, have learned after 100 times that she is indeed our present wrapped in a blanket.
So for me, it means making a judgement call everyday - what does Lyric need to know to be safe (don't ever leave with a stranger) and what's ok for her to believe (mommy is going to be so surprised when she opens the blanket and finds me!) The hardest part is everything else in between. I can't protect her from kids that are mean. I can't protect her from the learning challenges she will face. I can't protect her from failure. And I sure as heck can't protect her from Autism. But I can help educate others - as we hope to do through the Royal Ball Run event. As I do through this sporadic, but heart-felt blog. And I can do everything I can to prepare her. I can strengthen her. And maybe most importantly, I can spend less time introducing Lyric to the "real world" and spend more time introducing the world to "Planet Lyrica".
Monday, January 2, 2012
On Planet Lyrica, there's no such thing as the "R" word
| The only labels I'd give her is Smart. Beautiful. And Full of Potential. |
Several years ago, when I worked for United Way, I referred to a silly idea as "gay". Shortly afterwards, an openly gay co-worker of mine confronted me. What exactly did I mean by "gay" and did I have any idea how hurtful it was to use that word as a disparaging term? At the time, I was taken aback and even a bit offended. How dare she accuse me of being discriminatory! I considered myself to be as open and unprejudiced as anyone I knew, and certainly didn't mean anything by it. Looking back now, however, I completely understand how my poor choice of words could hurt someone and am deeply sorry I was unable to recognize it at the time.
Fast forward to the once-a-year IEP (individual education plan) meeting that parents of special needs children have with teachers, administrators, counselors, speech and language therapists, social workers and any other relevant expert providing care to your child. Every three years, the IEP is updated and includes testing, progress reports, recommendations and parental input on the special services and educational approaches deemed necessary or helpful for your child to reach their full potential.
I speak only as a parent when I say these meetings are PAINFUL. It's one thing as a parent to know deep down that your child has challenges. Sometimes, even insurmountable challenges. It's quite another, however, to see documented test results in writing. Or to hear the clinical evaluation of your child's cognitive ability. Or to hear how few, if any, friends your child has. I have rarely made it through one of these meetings without tears and am often sick to my stomach for hours.
Made even worse is the fact that state laws rarely keep up with the times. In the state of Illinois, a child like Lyric can only receive special services in junior high or high school if she tests out as Mentally Retarded. That's right. Autism doesn't mean a thing. But Retarded does. So parents of autistic children like Lyric must choose to have their child's IQ tested and "hope?" for the Mentally Retarded distinction. (The educational field often refers to this as MR but I'm using the real words on purpose. It's a bit uncomfortable, isn't it? ) During Lyric's IEP this fall, her dad and I were required to verbally accept the label, "Mentally Retarded" or "Cognitively Disabled" by answering the question not once, but twice from the Psycologist "So, do you choose to label Lyric as Cognitivally Disabled?" CHOOSE to label her? You mean...if we want our daughter to get every ounce of support she can possibly have to be as successful as possible, then actually, we have NO CHOICE but to label her, right? So yes, we agree.
Ugh. Ugh. and more Ugh.
This brings me back to unintentional use of words that can sting and hurt in ways you might never imagine. For me and for countless moms and dads of special needs children everywhere, the word retarded is not funny. It's not cute. It's not harmless. It hurts. (So too do "short bus" jokes. My daughter actually rode one back and forth to special ed preschool so you won't see me laughing....) My dear husband learned this lesson the hard way. One night, while we were dating, he was bantering during dinner with one of his buddies and quoted a movie line about "retards". The anger and tears that followed I'm quite certain have stayed with both him and his friend to this day. In fact, Pat has become quite the "R" word detector and will often look (very quickly and anxiously) in my direction and wait for my reaction. Or, as he did last night, he'll actually call out his closest friends on it.
So please, if you start to use the word to joke or be funny, think twice. Think about kids like Lyric, who is way more than the Mentally Retarded or Cognitively Disabled labels the state requires her to have. Those labels will never define her or kids like her, but words like retarded will certainly hurt them. So think twice. Then think again. And choose your words more wisely.
Planet Lyrica appreciates it.
Thursday, September 1, 2011
Recipe for a Rainbow
Lyric is not what you would call "graceful" or athletic. I've always wanted to teach her, however, that she has to at least try new things and maybe even interact with a few more children. My sweet girl has strapped on cleats for one (very painful) season of softball, squeezed into tap shoes for six (yay! very successful) years of dance, and begrudgingly put on tennis shoes for a handful of fun runs. (She HATES shoes and socks so this is always an undertaking).
My sister-in-law recently marveled at how good I've been about keeping her involved in extra curricular activities while one mom with a special needs child shared that she wished she could be that "brave".
If only they knew just how excruciatingly difficult it can be. With each new experience, I'm forced to pluck my daughter out of her comfort zone and thrust her into the "real" world... while I literally hold my breath and pray with every "at-bat" or dance recital that the world will be kind to her.
Most of the time, we're lucky. Lyric's sweet disposition has endeared her to many people - primarily adults. Its not unusual though, to have children call out greetings to her at the grocery store or her classmates at dance to reach out to her with compliments about her hair, her dress or her shoes in an attempt to be nice. As she gets older, however, her quirky behaviors are becoming less "cute" and are more often than not...just plain weird. (Talking to trees or scolding imaginary friends doesn't typically result in a lot of friends.)
Tonight I took her to a theatrical dance class in hopes of expanding her social skills and providing her yet another structured setting to learn something, anything that would "click". One of her daycare teachers recommended it (knowing how much Lyric loves to sing and "act") and after conferring with the wonderful staff at the studio, I decided to give it a try. Lyric, afterall, frequently makes up her own plays or "shows" for us at home. This should be perfect!
Oh it was perfect alright. Perfectly disastrous.
Within two minutes of the class, I realized it was way over her head. For the first exercise, each student was asked to stand up, say their name and "act out" an emotion they feel. I knew there was no way Lyric understood what "emotion" meant. All I saw was a completely blank stare. The girls went around the circle very excitedly announcing their name "Kristi!" "Alexis!" "Ashley!" and acted out various emotions "anger!" (stomped her feet) "scared!" (shivered) "happy!" (big smile!) "tired!" (sleeping). When it came to Lyric she looked at me with desperation. She had NO idea what she was supposed to do.
You could hear a pin drop as the circle of girls waited for her to take her turn.
Whew. At least that part's over.
The teacher thanked the girls and then asked them to go around the circle one more time. Only this time, they should share a different emotion. (Oh dear Lord, shoot me!)
So that's how it went for 30 minutes (the class is a full hour) of various activities. It might as well have been 24. At one point, the girls were asked to find an object in the room, work with a partner and make up a commercial. All the girls excitedly grabbed partners when the last one left realized she was "stuck" with Lyric. The look on her face was heartbreakingly disappointed. Lyric had become the lepper in the class.
Meanwhile Lyric ran over to me. "What's a commercial mommy?"
I took advantage of the break to pull Lyric to the side and suggest we just "watch" for awhile. I saw two girls who had been Lyric's partners at one point in the evening start talking in hushed tones about her - (couldn't hear what they were saying but 11-year-old girls haven't mastered gossip). I'm sure they were simply trying to understand why this seemingly normal and beautiful girl was so odd. Then they saw me watching them with what I can only imagine looked like LION eyes. One of the girls said "that's her mom!" and they immediately stopped.
Cue the heartbreak!
I barely made it to the car with Lyric before the sobs started. Now mind you - this is rare for me. Lyric has had several challenges over the years and I've tried to make it a point to never let her see me "down". This time, I didn't have a chance to refrain. I sat behind the wheel of my car and cried. Not because girls were talking about her (of course that stings a bit but its somewhat expected.) I was crying because everything is just so gosh darn hard for her.
Lyric called out from the back seat. "What's wrong mommy?"
"Nothing sweetie. I'm good". (Full sob at this point.)
"Why are you crying then?" (Lyric is always perfectly observant when you don't want her to be.)
I decided to be honest. "It just makes mommy sad that I can't help you sometimes. I know it's hard for you to understand what peole are saying."
"I tried really hard, Mommy. I'm sorry I'm shy". (Cue even more heartbreak.)
| Our little rainbow. |
"Oh sweetie - I know you tried so hard. I'm sooooo proud of you! And it's really OK to be shy." I was trying to smile and be reassuring but the sobs kept coming - as if years of worry and anxiety were just too much for me to bear.
Lyric thought for a minute as we drove away. "Mommy? Would it help if I sat next to you at dinner and gave you lots of hugs and kisses?" And with that, I started laughing through my tears. "Yes, Lyric that would help very much".
And just like that, Lyric reminded me (like she always does) that sometimes all you need is a little sunshine to turn the darkest rain into a beautiful rainbow. In fact, more often than not, I'm the only one that's even aware it's raining. All Lyric sees is the rainbow.
Tuesday, August 9, 2011
An "aha" moment!
A few weeks ago, I had a lunch meeting with the director of the Quad City Autism Center, Michelle Smyth. I shared with her that I was really troubled. We can provide Lyric the answer to a question - ie. "Your middle name is Kay". Then ask her the question, "What is your middle name?" and Lyric will look at you like you are speaking a foreign language.
The director told me to draw it next time. "Lyric sees in pictures," she said.
Ok...easy enough. I just didn't really understand how to put that advice into practical parenting use! On Lyric's first day of school, however, she was suddenly overcome with anxiety. Despite weeks of preparation and explanation - details regarding exactly how the bus would pick her up from daycare...take her to school...then return her to daycare later, she was completely, and utterly confused. "What about school, mommy?" "What about Just Kids?" "Where's the bus?" "Where's school?"
Suddenly, I remembered Michelle's advice. I grabbed a piece of paper and drew a map - from Just Kids to the school and back. I drew Lyric...I drew the bus...I drew arrows. And literally...I saw a light go on in Lyric's head. She got it! She clutched that map and triumpantly explained it to anyone who would listen. I learned later she even shared it at school and for this wacked-out mama it was the best first day of school ever!
Whew...a success!
So after months of planning, agonizing and praying Lyric would not only enjoy but survive her birthday party....she gave ME the best birthday gift ever right before we sang Happy Birthday. Listen close...she says "This has been the best birthday ever!" Success!
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