Posts Tagged ‘religion’

Autism’s Mom

I used to be a self-centered, self-indulged, pampered princess. I blindly went through my days seeking out people who stroked my ego and things I found exclusively pleasing. Although I wasn’t the deliberately malicious type, I often found myself involved in shallow judgment and frivolous gossip. The girl I used to be has since been replaced with a giving, patient, educated, and nurturing spirit. Now, as the mother of an autistic child, there is no room for selfish endeavors or insensitivity of any kind.

            My son, Ryan, was born six weeks premature after a long and complicated pregnancy. Plagued with pre-term labor, heart palpitations, and in the end, pre-eclampsia, it is amazing he made it at all. It took some time for Ryan and me to bond, as we were separated for the week following his birth so I could get well. I remember seeing him for the first time in the NICU, hooked up to monitors, an IV in his tiny arm. His heel was raw, as he received several pokes for the blood needed to check his bilirubin levels. I put my hand through the arm hole of the incubator, laying it on his tiny belly. I fell in love with him in that moment, crying and praying that God would keep him healthy and safe for all of his days.

            Ryan was diagnosed with autism after a harrowing kindergarten year. There wasn’t a day that went by where he didn’t cry or wish to come home from school. He displayed several OCD behaviors, like washing his hands over and over, and flicking the lights on and off. Because he was my first child, these behaviors didn’t register as alarming. It never occurred to me that lining up blocks instead of stacking them was a symptom of anything. The thing that led me to seek help for Ryan was his obvious sensory dysfunction.

            During practice fire drills at school, Ryan became overly stressed at the sound of the alarm, causing him to wet and soil himself. The principal felt this was fairly common amongst kids his age, and tried to ease my concerns. However, my concerns grew one night after taking him to a high school basketball game where he screamed and flapped his hands against his ears at the sound of the buzzer. We took him home immediately, knowing something was very wrong.

            It didn’t take the child psychologist long to ask, “Have you ever heard of Asperger’s Syndrome?” Her question led us to many books, articles, and a Psychiatrist. The doctor recognized Ryan’s condition immediately, finally giving a name to the behaviors that didn’t make sense. Now that I knew what I was dealing with, I embarked on the daunting task of parenting my son.

            As Ryan’s mom, my day usually begins when he wanders into my bedroom and announces the time. Ryan, like most autistic kids, put themselves and everyone in their sphere on a strict schedule. “Mom, its seven-thirty,” he prods. Of course, being woken up in this manner, I am annoyed. As it must, patience wins out and I stumble out of bed.

            Because Ryan is also bipolar, he is often severely manic in the morning and talks incessantly. Sometimes it seems as though he forgets to breathe. I put my hand over his heart and ask him to take a few deep breaths. This is something I began doing as a way to focus and calm him. It doesn’t always work, but it gives him a short reprieve from the madness.

            When we’ve completed his breathing exercises, I embark on the hated ritual of dispensing medication. This is an especially trying time for me. I remember, before becoming parents, my husband and I would discuss medicating children and how we vowed that we would never become “those” parents. Needless to say, every morning I take a bitter bite of humble pie. Ryan is on several medications, which come in different forms. I prepare his liquids in a cup and add a bit of apple juice to try and mask the horrible taste. In a small bowl, I crush two pink tablets, and then combine the powder with tiny peach beads from a capsule. I add vanilla yogurt to the mixture and hope I haven’t measured out more than two bites. Ryan will only take two bites; he does not break this routine. How this daily event goes lies most heavily on my son. Some mornings, it is smooth sailing, while other times he runs around the kitchen making siren noises and eventually ends up hiding under the kitchen table.

            There is always dramatic potential when it comes to getting dressed. Ryan has severe sensory integrated dysfunction. This is a fancy way to say that he is very particular in the things he wears, eats, touches, and smells. It is my job to make sure all shirts are tag free, pants have the “right” fit, socks are the same brand (Adidas) he’s worn since he was three, and shoes are a little too big. Making sure these variables are in place assures at least one harmonious task.

            Because Ryan has significant manual dexterity issues, eating breakfast is a tremendous undertaking. Like most children, he loves cereal. This poses a problem as he is clumsy with his spoon and usually ends up wearing half of his breakfast. I try to remind him to use a paper towel to catch the milk droplets and falling cereal, however, he hates the texture of it and won’t follow my suggestion. During most meals, he gets frustrated trying to manipulate eating utensils and usually gives up, resorting to using his fingers. Although I know this is a Miss Manners nightmare, I don’t feel it is productive to add more stress on an already high stress situation. I’ve learned to choose my battles cautiously.

            When it comes to brushing his teeth and manipulating the tooth paste tube, Ryan is no professional! I send him in to the bathroom to complete this mission and fret about what disaster I will find afterward. What I usually find are blobs of tooth paste clumped in the sink, smeared on the counter, and clogging the end of the tube. Instead of shouting at him or becoming enraged, I give him Clorox Wipes to take care of the mess. This way, he doesn’t feel bad about himself for not being neat, but independent for being responsible for his own mess.

            Before heading off to school, Ryan makes sure he checks the school lunch menu and decides on the choices given. Since he has displacement issues, he will not take lunch to school. In his mind, food made at home belongs at home and food prepared at school is strictly for school lunch. Despite costing $40 per month, I understand how Ryan’s mind processes this information and make adjustments in our household budget to accommodate the charge.

            If everything goes well, I will not get a phone call from Ryan’s teacher or the school principal. When I do answer one of these calls, they usually tell me that he is having a hard day and can’t seem to cope in his overwhelming sensory and social surroundings. On these difficult days, I exercise one of two options. The first is to visit him at school and see if I can get him to verbalize his frustration. For the most part, addressing the origin of his anxiety and talking it through works wonders. My last resort is to take him home and let him unwind. The most important thing for Ryan is that he has options.

            Before picking my son up from school, I make sure dinner is planned and in the beginning stages of preparation. Ryan has a strict routine when he comes home from school and an early dinner is one of the components, along with riding his bike eighteen times to the end of the street and back, and drawing parallel lines in the driveway with sidewalk chalk. The lines represent order in his world.

            Bedtime also holds a rigid routine. After dinner, I dispense his evening medication and then it’s off to bed. Because his dad works third shift and naps in the evening, Ryan crawls into dad’s bed and snuggles until he falls asleep. Yes, this means I’m never alone, even in slumber. When it’s my time for hunkering down, I take advantage of Ryan’s stillness and calm. I rub his head (something he doesn’t allow me to do during his waking hours), kiss his cheek, and wrap him in love. I know most people have issues with children sleeping in their parent’s bed, but I am not one of them. For Ryan, my bed is a safe haven where he can let his guard down and feel at peace. I could never begrudge him this retreat.

            Although I constantly feel overwhelmed and overworked, I parent Ryan willingly. I don’t find the need to blame God for his disability, or wring my hands with worry. I don’t feel guilty that I did something to cause his autism and I don’t make him feel that he is autism. I take each day and live it with him: laughing when he laughs, crying when he’s sad or hurt, and rejoicing in small victories. Most of all, I am proud of who I’ve become in the storm of Ryan’s autism.

I’m Hanging By A Thread

My nighttime slumber was interrupted by a horrible bout of nausea and backache. I’ve felt on the cusp of worshipping the porcelain God for hours. It is draining.

I pray for a random virus or influenza. I fear pregnancy. I understand that God has a sense of humor, but I hope he is laughing at someone else this morning! I’m not equipped to face anything other than sickness at the present moment. (I’ll bet Mary’s been begging God for a baby during her bedtime prayers! That traitor!!)

I am weak and tired. Good night all.

Mary’s E.T. Meltdown

While watching E.T. The Extra Terrestrial, Mary started screaming and hyperventilating. The scene where E.T.’s heart stops and they try to revive him was to blame for her meltdown. She acted as if she was in horrible pain.

“They did that to me! They did that to me when I was born!” She yelled this and pointed at the TV. Mary was referring to the doctors as they performed compressions on his chest, and bagged him. I tried to calm her, using my soothing “mommy” voice. She kept yelling as if in a trance. The words echoed through the house, “They did that to me!”

What I didn’t know, is that when she was born, “they” really did do that to her. I verified this through Elise, who was in the room when Mary was born. It is true, her birth was very serious and not the scene I’d envisioned when bringing my daughter into the world.

Mary was a large baby and got stuck in the birth canal. Her heart rate vanished, and the delivering doctor ordered a host of nurses to get on top of me and manually push her out. It was scary and painful, to say the least. My calm, cool and collected OB was suddenly very anxious, hostile, and hurried. Because I was so wrapped up in what was happening to my body, I missed many details of Mary’s first moments out of the womb.

Elise filled in the blanks, explaining that when Mary finally emerged, her heart rate was non-existent, and there was no respiration. She was basically gone. They did bag her and were doing two finger compressions. This explains why Elise cries every year on Mary’s birthday. She views her as a miracle and can’t believe she made it and is now a happy, healthy, and sassy little diva.

My bewilderment is that Mary couldn’t have known these details. With things so harried, I  didn’t know them. Regardless, Mary acted as if she was reliving those first minutes of her life, and I believe she really did remember, even for a brief moment. I won’t analyze how this could possibly be, but accept something I cannot explain. Either way, my daughter made it, fought hard to make it. She is vital and alive, and her mother is thankful to “them.”

Ending Life

I clutched the large phone book in my shaking, sweaty hands.  My heart was racing, my breathing shallow.  I clumsily dialed the number printed boldly on the yellow page.  “Thank you for calling the Women’s Center. How may I help you?” greeted the receptionist.  I closed my eyes as hot tears stung my cheek. “I’d like to make an appointment,” I said.  “We have an opening on February 14th,” she offered. 

Valentine’s Day, I thought.

I cared what my parents thought of me; respected their life experience and accepted their guidance.  In high school, I was a good girl who never stayed out past curfew or went to drinking parties.  I was your typical overachiever: cheerleader, student council member, newspaper editor. At twenty-one, I was horrified and confused when confronted with the reality of who I had become: a pregnant, unmarried college dropout.

The transformation began the night I went to see an acquaintance that played in a band. Oblivious to the danger of a girl alone in a bar, I ordered an alcoholic drink, enjoying the loud music and the strangers around me. Cigarette smoke swirled in the air as I danced. When the band finished their set, I went outside for some fresh air.  I went back inside as the band resumed their play with a bluesy, erotic rendition of Prince’s “Purple Rain.” I returned to where I’d left my drink and finished it before ordering another. 

When I woke up the next morning, I was lying naked on a blanket strewn mattress in the middle of a dark musty basement. Instinct told me something happened that I had not consented to.  I frantically searched for my clothes. When I was dressed, I made my way upstairs to assess the situation. Mike, the drummer of the band, was in the living room smoking marijuana. Gathering what courage and strength I had left, I hesitantly approached him.

“Where’s my car?” I stammered.

“Still at the bar,” he replied coldly, looking towards me but never making eye contact.

With no other alternative, I asked him for a ride. In a dismissive tone, he said he’d call a friend to take me to my car. Out of options, and with so many thoughts and emotions racing through my mind, I waited.

That was the last time I saw Mike. I felt disgusted and dirty for being so naive. I made a silent pact with myself to never speak of that night to anyone. Denial came to a screeching halt one day, six weeks later. I’d realized I’d missed my period. With an acidic burning in the pit of my stomach, I made my way to the local Rite Aid for a home pregnancy test. It was positive.

Shocked and in another phase of denial, I kept the pregnancy a secret. It was torture to keep something so life altering from my parents. In the beginning, I hadn’t even contemplated abortion or adoption. In my mind, I was going to have a baby. I made an appointment with an obstetrician and went in for the initial evaluation, which included a due date and ultrasound. Feeling somewhat detached from my pregnancy, I shopped for maternity clothes and pregnancy books. I told my friends, and finally my parents. I still kept the pact I’d made with myself that night. I didn’t divulge the details of paternity.  I found it easier to let the world think I was a loose irresponsible woman than admit the truth: I had been the victim date rape.

About nine weeks into the pregnancy, I panicked. My mother informed me that I wouldn’t be able to live with her after the baby came. How was I going to raise a child without a home? I struggled to find an answer to this question, but with an income that was barely enough to take care of one person, I was at a loss.

I made the choice to end my pregnancy for so many reasons: I was young and scared, financially incapable of paying for the care of a child, not to mention the criminal circumstances of its conception. I did not have the emotional resources to think from day to day and make a life plan that included a baby. 

I did not allow myself to believe that I was carrying a baby. At the time, I just wanted to make it all go away. I took what I thought was the easiest way out. Unfortunately, there really wasn’t an easy way out.

I never could have foreseen that one unguarded night would lead to the most devastating and life changing experience of my existence: the day I ended a life.

            I woke up early that morning, having slept little the night before.  I was told to wear loose, comfortable clothing.  Did I deserve to be comfortable?  I put on worn-out grey sweat pants and an oversize flannel shirt.  I chose to wear slippers with a hard rubber sole so I wouldn’t have to bend over to tie my shoes afterward.  I put my hair back in a ponytail.  I did not put make-up on.  I did not look like me.

            My sister picked me up.  My mother walked me out to the car.  I could see the regret and devastation in her eyes.  Most of all, I saw the look of a Mother’s love and concern, the look that said, “I will be here for you when it’s over.”  My sister got behind the wheel and started the engine.  I put on my seatbelt. Now I think about safety, I thought.  The drive was eerily peaceful.  The same route I’d taken to work every day, only somehow it was different.  I’d have to find a different route from now on.

            We pulled into the parking lot.  I took a nervous breath.  I was scared.  I got out of the car, my legs wobbly.  “Are you alright?” asked my sister. “Fine,” I said.  We walked into the office.  I checked in at the desk, looking around at the others who were waiting.  I wondered if they could they tell why I was there.

The waiting room walls were dressed in dollar store artwork with spotted glass and brassy frames. The dark brown paneling matched the commercial grade carpet plagued with snags and bald spots. I sat down in the ancient black vinyl chairs with duck tape covering their damaged state.

I looked at my feet, unable to make eye contact with anyone.  I was ashamed.  I picked up a magazine.  I couldn’t concentrate on the article, which went into great detail about the best hairstyle for any face shape.  I was screaming inside. 

The nurse called my name.  It was time. I could leave, I thought. 

            I followed the nurse to a room where she handed me a long, fat white pill.  Valium, it said, in microscopic black letters.  I took it with a tiny plastic cup of water.  I felt it stick to the back of my throat.  It left a bad taste in my mouth.  I took off my clothes and put on a stiff blue paper gown.  I started to shake uncontrollably.  I was so cold.  I was so scared.  I can’t do this, I thought.

The nurse came to get me.  I followed her down the hall.  She led me into another room.  Inside was a reclining table with stirrups at the end, pointing towards the ceiling.  At the foot of the bed was a large human vacuum, still soiled with someone else’s blood.  The wall looked like an artist had taken a paint brush and splattered red paint all over it.  There were many before me.

I lay on the table and put my feet in the stirrups.  The doctor came in.  He introduced himself and shook my clammy hand.  He gave me a shot in a horrible place.  “You need to relax your muscles,” he said.  I started to cry.  He turned on the machine.  It made an evil roar as it came to life.  The doctor put the vacuum inside me.  I screamed a loud, gut-wrenching scream.  Life was being sucked from deep within me.  I lowered my hands to try and push the vacuum out of my body. The pain was horrific.  The nurse restrained my hands and held them away from my stomach.  The doctor encouraged me to be quiet.  “We don’t want to scare the other patients,” he prodded.  I thought I would die.  Then it was over.  What had I done?

I don’t know if I will ever be healed from the consequence of my choice. Immediately after my abortion, horrific nightmares began of finding baby body parts in a warm, sticky pool of blood at my feet. They have now subsided and only occur when I am under severe stress.  During the early days of my marriage I suffered four miscarriages. I believed I was being punished for killing an innocent being.

I think of my first child often.  In my mind I have made him a boy with platinum blonde hair and piercing blue eyes.  In my heart, I know he forgives me for ending his life so violently, but will I ever be able to forgive myself?

 

 

 

 

Love is engulfing me

I’m astounded by the love that has surrounded me this week. That is simply all I can say. Last week is history, and now I am basking in the joy of what has come to pass. As I’ve said before, I cherish everyday I wake up, embrace the gift of life, and revel in its newness.

Feeling that nothing could top Sunday’s soul soaring events, God has shown me that I should never set limits on His grace and blessings.

Lately, I’ve been feeling emotionally spent, a dry well. I have been feeling burnt out, overstressed, and under appreciated. I’ve felt invisible in some ways,  that nobody has really noticed me. Small doubts have been eating away at my confidence and direction. Maybe, subconsciously, I was pleading with God to show me that I am on track: Doing His work and using my gifts to His glory.

You know what they say, “Be careful what you wish for because you just might get it!” Well, I got it!

Because of two significant things, I am revived, elated, energized, and more determined than ever. I’ve been noticed! Not by one person, but many. It is a humbling experience to realize that you impact others and inspire them. Me, inspire others? Who knew! I would say that I usually look to others for inspiration, and I have many inspiring people in my life. Their creativity, love, courage, and friendship mean everything to me.

So, this dreamer will keep dreaming. I hope my dreams and talents inspire others, as I continue to feed off of the people that inspire me. For now, I will revel in the fact the I’ve been noticed.

Can You Feel The Love?

Oh, where do I start? This week (and it’s only Wednesday) has been mind boggling, heart exploding, and tear jerking. Beginning on Sunday and arriving at this moment has been a profoundly humbling experience. In some ways, I’m not sure I can take it all in, process it with the clarity it deserves. For now, I am simply feeling and reflecting.

Like we do on Sunday mornings, the kids and I head to church. We are blessed to be a part of a non-denominational congregation where hypocrisy and judgement are NEVER welcome. I have been in churches in the past where it seemed these things ruled in place of Christ’s love and acceptance. We are now where we are supposed to be and feel grateful for our church family and friends. It is a comfort to know, in absolution, that the people we worship with on Sunday mornings are exactly the same every other day of the week. Amen!

Ryan feels loved and understood in our church. He knows that everyone has self-educated themselves on autism and behavioral characteristics that accompany it. He is blessed with these people that will not hold the words “I hate Jesus!” against him when shouted in sensory frustration and social anxiety. Filled with remorse after he realizes the seriousness of his outburst, they whisper gently, “Jesus loves you, Ryan. He knows your heart and forgave you before you said a word.”  

These beautiful people also posses the kindest hearts and will give to their brother- no questions asked. I experienced this first hand this week. While having a private conversation with a lady who sits in the pew behind us, I mentioned that we were struggling financially. I was only asking her for prayer, but as the Holy Spirit often does, this lady was moved by our story. She knows we relocated only for Ryan’s benefit, searching out the best and most prepared school district in which to place him. Unfortunately, it wasn’t a smooth transition for him and I ultimately had to resign from a very lucrative position with an investment firm to devote 100% of my time to my little man. In the process of losing my much needed income, my husband and I were forced to file Chapter 13 bankruptcy. My husband’s income is barely enough to support the bi-weekly bankruptcy payments, much less our other expenses. While talking to Mrs. Williams, I confided that our meals are slight and gas prices are killing us. I did not reveal this information in hopes of pity or charity, just as one mother and wife leaning on another mother and wife for emotional support. To my amazement, Mrs. Williams, with her husband in tow, arrived at my front door with armfuls of groceries and the kindest words that I’ve ever received, “We just want you to have a good week.”