"Baseball Tournament"...what a melodious sound! The only sound that could be better would be a buzzsaw knawing through the cartilage in my left knee cap.
I have four kids and two of them are on the autism spectrum. My 10 year old son who does not have a spectrum disorder is a little league pitcher and eats, sleeps, and breathes baseball. I am a very proud mommy and I know that we do not have a dollhouse perfect life and try to accomodate his needs being that he is the PB&J of a neurotic household sandwich. But, it damn near kills me to haul my two-year-old son with autism to that baseball field.
A baseball practice is enough to ruin a perfectly good routine, but these tournament games start an hour later than practice so this is really going to define disruption. All day long I watched the clock in misery knowing that the big event was drawing near. The hands on the clock appeared to wave at me as they ticked by...almost saying, "two more hours until your date with Hell." To try to soften the blow I cooked supper an hour early to fill up my child's tummy hoping that a full stomach will hold off his usual exorcism. I packed a huge totebag full of things to keep him occupied...five bags of gummy fruits, a sippy cup, a toy laptop, three different types of bubbles, oatmeal cookies, and his "child saftey harness" (aka...Leash). Then I put on my warpaint, knee and elbow pads, and protective head gear and we were ready to go.
We arrive at the field and set up camp which is usually close enough to the field to see my older son play ball and just close enough to the car to make an escape. I settled my toddler in with his little chair and a bag of gummy fruit...so far so good. I just might be able to take my helmet off tonight <insert sarcasm>.
My older son took the pitcher's mound as the other players took their places. The game had begun...literally. First pitch went out...Strike!!!! Second pitch...Strike!!! Strike!!! One batter up and down. My toddler was on his third bag of gummy fruits and I went ahead and lined up the next item of pacification from the intervention bag. I handed him his toy laptop and he began to bang on the keys and the sound of "B says Buh...B says Buh" began to float through the air. He is so happy.
Heading into the third inning, bases loaded, and my two year old is still content with some oatmeal cookies and laughing and smiling as he tries to pop the bubbles that are floating by. I was smiling and letting my guard down some by this point. Then a pop fly was hit deep into center field...looks like a homerun. The crowd stands and cheers...LOUDLY. My little man jumped up out of his chair and began to cry and scream. He wasn't expecting such a display and such loud clapping and yelling. I tried to blow more bubbles but he was still very upset. I offered him the last item of serenity from my dwindling bag of happiness...the toy train. I watched in slow motion as it was tossed into the dirt. His meltdown was beginning to escalate at this point. He then took off in a sprint across the grassy parking area and my heart sank. I had not put his safety harness on him. I took off behind him screaming and yelling for him to stop. No reaction. I wasn't sure if he just wasn't responding or if he couldn't hear me over the sound of my thighs rubbing together and my muffin top flapping against my waistline. I finally grabbed him and brought him back kicking and screaming. My husband slid his harness on him and walked him away still wailing and crying. I looked down and then looked around to scan the bleachers...several parents were staring at me and several were staring at my child. The usual...but it still bothers me.
It was now the bottom of the sixth inning and somehow my husband had managed to calm him and they were walking around and I saw my youngest son picking dandelions and smiling. I felt a rush of relief. We are almost through this game and so far only one meltdown. I was feeling pretty good about things at this point. "Lord, thank you for this evening", I thought.
All of a sudden I heard piercing screams. I felt my entire body tighten up. "What has set him off this time?", I thought. I turned to look in the direction of my child, but it wasn't him that was crying. It was the little girl that he was slapping and physically attacking near the other set of bleachers. I jumped up and ran as fast as I could. I saw my husband trying to pry him away from the other child. Just as I got there the little girls mother was stepping off the bottom bleacher. Here is goes...it's time to play the famous Autism Card. "Ma'am...I am so sorry. He has autism and he just doesn't understand that hitting isn't appropriate. I really am truly sorry. Could I buy your daughter something from concessions to make up for this?" I was expecting her to spit on me when she just wiped her daughters tears away and smiled at my son and then looked up at me and said, "It's fine. I completely understand. These things happen and she will be just fine. No need to buy her a thing.". I thanked her and apologized again.
I was in absolute disbelief. Who was this alien creature from an unparalleled universe? No dirty looks? No ridicule of my parenting skills? No ugly comments muttered under someone's breath? There are people in the world that understand...imagine that.
My son's team lost the game by six runs, but that night my family had won by a mile.
Wednesday, April 27, 2011
Monday, April 18, 2011
Autism and Scrambled Eggs
I am beginning to learn that sometimes it doesn't matter what I do...things just tend to be chaotic. I would love to blame everything that is dysfunctional in my life on autism, but that just wouldn't quite be fair. I had my fair of dysfunction before I had my children...the autism just adds whip cream and a cherry on an already super-crazy life-sundae. So lately when life has been handing me lemons, I have been pointing the finger at the Big-A. If it weren't for autism we could all go out to eat more often. If it weren't for autism we could do this, that, and the other. If it weren't for autism my life would be so much easier. It is so nice to have a punching bag for everything that goes wrong. When you don't have a dog to kick...just blame it on autism.
This past Saturday was especially challenging. Our very small community (Tickbite...not even making that up) has a festival every year to celebrate shad. Most every small town in North Carolina has a festival of some sort. They celebrate dogwoods, magnolia trees, watermelons, and even collards. Well, in our community we celebrate The Shad. For those of you who aren't aware a shad is a seasonal fish that runs in local fresh water rivers and creeks during early spring. People here worship the Shad Festival like it is the running of the bulls in Spain. They celebrate the festival at the end of the week with a huge parade and all the participants are your neighbors and family.
My husband was so excited to take the kids that he started planning our family outing to the shad parade. I stopped him. I reminded him how Logan couldn't tolerate the last parade we took him to and that parades cause him to become overly stimulated and would ultimately cause him unnecessary stress and meltdowns. We agreed that my husband would take our four year old and I would take Logan with me to his older brother's baseball practice. Logan loves to be outside and I thought baseball practice was the lesser of the evils.
We get to practice and my oldest son (who has Aspergers and dislikes parades as well) climbed up on the top bleacher and involved himself in a Nintendo DS while my 10 year old ran out on the field. I strapped "Spongebob" into his harness and we began to walk around the outside of the field. I had my reinforcements...a pack of gummy bears, bottle of bubbles, and a musical toy. After the gummy bears were gone and the bubble solution was now soaked through the leg of my capri pants and the musical toy tossed into a tuft of clover that hadn't been mowed, the madness ensued. Smiling one minute while having the time of his life, now my child was in the throws of what might go down as one of the most famous and notorious tantrums of all time. What set him off you might ask? That is only to be answered by him and the good Lord. There he was on his stomach lying in the grass...headbutting, shrieking, and screaming. I was looking around like I always do to scan to see who was staring...initial headcount revealed two coaches, 9 ballplayers, five mothers, and six kids playing nearby. The only person who wasn't staring was my oldest son who had probably just unlocked a new Poke'mon and has become so completely immune to these episodes he hadn't noticed. I made eye contact with my 10 year old who was standing on the pitcher's mound and I was met with a look of utter horror. I decided for the sake of everyone else's sanity I would sacrafice my own and hauled my son, kicking and screaming, to the car.
Once in the car, after inhaling 3 juice boxes, the meltdown continued. At this point, his clothes were completely soaked with Hi-C fruit punch and there was no way I was about to get him back out of the car. While he headbutted, thrashed, and screamed for 45 minutes, I sat in the driver's seat listening to some 80s/90s radio station. I could see some of the other mother's staring over at our suv, which was now swaying like two teenagers parked on Lover's Lane. I wasn't sure if they were staring at the rocking of our car or the screams and shrieks that were being emitted. I turned up the radio to try to drown him out..."Just a small town girl, livin' in a lonely world, she took the midnight train goin' anywhere....". I was thinking about how great that midnight train was sounding when I saw the coaches calling all the players in and my older boys came to the car. My ten year old starts complaining as soon as he gets in the car. "We can't go anywhere" "Why did you have to bring him". I just shook my head and headed home. "Damn Autism.", I thought.
Once home my husband pulls up right behind us and he and our four year old come in grinning from ear to ear. They were both donned in Mardi Gras beads and my husband was holding a bag of cotton candy and he began telling me all about how much fun they had...blah...blah...blah. I told my husband how much fun I had and that we had might as well all gone to the parade together. It has become apparent that it doesn't matter what we do...Autism is in control. I told my husband I needed a break. More like begged for one, in all honesty. I pleaded that I needed to run to the grocery store and that I needed to go alone to clear my head. He knows I can't grocery shop with Logan because he screams in the store from the time I walk in until the time I walk out, so he agreed to watch all the kids so I could get out for a while and get what I had justified was a much deserved break.
Relieved to have some me time, I headed out. I tried to stretch out this shopping trip as long as I could to give myself much needed relaxation and retail meditation. I only get to go grocery shopping about twice a month so of course we needed tons of stuff. I grabbed a cart and got on my way. Of course...halfway through the store the wheel on the front of my cart became lodged in a east/west fashion and wouldn't roll. I had way to many things to transfer so I "rolled on". By the time I was done shopping the cart was weighted down with tons of frozen foods, snacks, milk, bread, and meats. I could hardly see over the top and the cart was so heavy I could barely push it and the front right wheel had taken the day off completely at this point. I couldn't push it. I stopped and wiped the sweat off my forehead. People were walking by staring at my cart because it was overflowing. I began to push the cart with one arm on the bar and the other hanging onto a carton of eggs on top. It wouldn't move so I had to start shoving the cart with my right hip. I did this all the way to the register...pushing it with my hip. I tried to avoid the stares, pointing, and whispers from everyone as I did the electric slide all the way to aisle three. I got behind two other ladies and found it annoying that I was being stared at and whispered over and Logan wasn't even with me. This completely defeated the purpose of getting away alone. I tried to not let it bother me while I held onto all the items that were a hair away from falling out of the cart, especially the eggs.
After loading all the groceries onto the belt, I held onto the eggs because I was scared they would break underneath all the other groceries. The cashier was nearing the end of the line and asked if I wanted to hand her the eggs. I told her I wanted her to ring them up last because I was afraid they would break and I had a special place in the seat of the cart I wanted to put them. She finished up and I handed her the eggs and then placed them in the one spot in the cart that wasn't covered in bags of groceries. I did the hip boogie all the way to the front of the store and out the door to my car and walked right into the beginnings of the severe weather that was forcasted to hit our community. The wind had picked up and my hair was blowing all over my face and I couldn't see a thing. I just continued to hip-shove the cart all the way to my car. I got most of the groceries in the back while the wind blew stronger and stronger. Finally I grabbed the carton of eggs that I had held onto with such determination and as I was about to put them in the front seat with me a huge gust of wind came and blew against me so hard that I lost my footing and let go of the eggs. I heard them hit the ground with multiple cracks. As soon as I detangled the hair from my face and wiped the sand from my eyes, I looked down and saw the precious eggs lying on the ground in a yolky mess. I just stood there...wind whipping...hair blowing...eggs running...and laughed. I laughed so hard my sides hurt. I leaned up against my car and laughed so hard that I could hardly stand myself. It really hit me...I can't blame everything on autism. This is life. No matter how crazy or challenging autism might make things...life is challenging and crazy anyway. I can't constantly try to predict and manage every little aspect of life. I can't be the event coordinator 24/7 for our family, because life is unpredictable.
I came home from my trip refreshed and with a new attitude, but not because I had this really relaxing and rewarding experience, but because I had an egg-salad style epiphany that I can't control autism and autism isn't always controlling me. I am learning you are going to crack a few eggs every now and again with or without autism.
This past Saturday was especially challenging. Our very small community (Tickbite...not even making that up) has a festival every year to celebrate shad. Most every small town in North Carolina has a festival of some sort. They celebrate dogwoods, magnolia trees, watermelons, and even collards. Well, in our community we celebrate The Shad. For those of you who aren't aware a shad is a seasonal fish that runs in local fresh water rivers and creeks during early spring. People here worship the Shad Festival like it is the running of the bulls in Spain. They celebrate the festival at the end of the week with a huge parade and all the participants are your neighbors and family.
My husband was so excited to take the kids that he started planning our family outing to the shad parade. I stopped him. I reminded him how Logan couldn't tolerate the last parade we took him to and that parades cause him to become overly stimulated and would ultimately cause him unnecessary stress and meltdowns. We agreed that my husband would take our four year old and I would take Logan with me to his older brother's baseball practice. Logan loves to be outside and I thought baseball practice was the lesser of the evils.
We get to practice and my oldest son (who has Aspergers and dislikes parades as well) climbed up on the top bleacher and involved himself in a Nintendo DS while my 10 year old ran out on the field. I strapped "Spongebob" into his harness and we began to walk around the outside of the field. I had my reinforcements...a pack of gummy bears, bottle of bubbles, and a musical toy. After the gummy bears were gone and the bubble solution was now soaked through the leg of my capri pants and the musical toy tossed into a tuft of clover that hadn't been mowed, the madness ensued. Smiling one minute while having the time of his life, now my child was in the throws of what might go down as one of the most famous and notorious tantrums of all time. What set him off you might ask? That is only to be answered by him and the good Lord. There he was on his stomach lying in the grass...headbutting, shrieking, and screaming. I was looking around like I always do to scan to see who was staring...initial headcount revealed two coaches, 9 ballplayers, five mothers, and six kids playing nearby. The only person who wasn't staring was my oldest son who had probably just unlocked a new Poke'mon and has become so completely immune to these episodes he hadn't noticed. I made eye contact with my 10 year old who was standing on the pitcher's mound and I was met with a look of utter horror. I decided for the sake of everyone else's sanity I would sacrafice my own and hauled my son, kicking and screaming, to the car.
Once in the car, after inhaling 3 juice boxes, the meltdown continued. At this point, his clothes were completely soaked with Hi-C fruit punch and there was no way I was about to get him back out of the car. While he headbutted, thrashed, and screamed for 45 minutes, I sat in the driver's seat listening to some 80s/90s radio station. I could see some of the other mother's staring over at our suv, which was now swaying like two teenagers parked on Lover's Lane. I wasn't sure if they were staring at the rocking of our car or the screams and shrieks that were being emitted. I turned up the radio to try to drown him out..."Just a small town girl, livin' in a lonely world, she took the midnight train goin' anywhere....". I was thinking about how great that midnight train was sounding when I saw the coaches calling all the players in and my older boys came to the car. My ten year old starts complaining as soon as he gets in the car. "We can't go anywhere" "Why did you have to bring him". I just shook my head and headed home. "Damn Autism.", I thought.
Once home my husband pulls up right behind us and he and our four year old come in grinning from ear to ear. They were both donned in Mardi Gras beads and my husband was holding a bag of cotton candy and he began telling me all about how much fun they had...blah...blah...blah. I told my husband how much fun I had and that we had might as well all gone to the parade together. It has become apparent that it doesn't matter what we do...Autism is in control. I told my husband I needed a break. More like begged for one, in all honesty. I pleaded that I needed to run to the grocery store and that I needed to go alone to clear my head. He knows I can't grocery shop with Logan because he screams in the store from the time I walk in until the time I walk out, so he agreed to watch all the kids so I could get out for a while and get what I had justified was a much deserved break.
Relieved to have some me time, I headed out. I tried to stretch out this shopping trip as long as I could to give myself much needed relaxation and retail meditation. I only get to go grocery shopping about twice a month so of course we needed tons of stuff. I grabbed a cart and got on my way. Of course...halfway through the store the wheel on the front of my cart became lodged in a east/west fashion and wouldn't roll. I had way to many things to transfer so I "rolled on". By the time I was done shopping the cart was weighted down with tons of frozen foods, snacks, milk, bread, and meats. I could hardly see over the top and the cart was so heavy I could barely push it and the front right wheel had taken the day off completely at this point. I couldn't push it. I stopped and wiped the sweat off my forehead. People were walking by staring at my cart because it was overflowing. I began to push the cart with one arm on the bar and the other hanging onto a carton of eggs on top. It wouldn't move so I had to start shoving the cart with my right hip. I did this all the way to the register...pushing it with my hip. I tried to avoid the stares, pointing, and whispers from everyone as I did the electric slide all the way to aisle three. I got behind two other ladies and found it annoying that I was being stared at and whispered over and Logan wasn't even with me. This completely defeated the purpose of getting away alone. I tried to not let it bother me while I held onto all the items that were a hair away from falling out of the cart, especially the eggs.
After loading all the groceries onto the belt, I held onto the eggs because I was scared they would break underneath all the other groceries. The cashier was nearing the end of the line and asked if I wanted to hand her the eggs. I told her I wanted her to ring them up last because I was afraid they would break and I had a special place in the seat of the cart I wanted to put them. She finished up and I handed her the eggs and then placed them in the one spot in the cart that wasn't covered in bags of groceries. I did the hip boogie all the way to the front of the store and out the door to my car and walked right into the beginnings of the severe weather that was forcasted to hit our community. The wind had picked up and my hair was blowing all over my face and I couldn't see a thing. I just continued to hip-shove the cart all the way to my car. I got most of the groceries in the back while the wind blew stronger and stronger. Finally I grabbed the carton of eggs that I had held onto with such determination and as I was about to put them in the front seat with me a huge gust of wind came and blew against me so hard that I lost my footing and let go of the eggs. I heard them hit the ground with multiple cracks. As soon as I detangled the hair from my face and wiped the sand from my eyes, I looked down and saw the precious eggs lying on the ground in a yolky mess. I just stood there...wind whipping...hair blowing...eggs running...and laughed. I laughed so hard my sides hurt. I leaned up against my car and laughed so hard that I could hardly stand myself. It really hit me...I can't blame everything on autism. This is life. No matter how crazy or challenging autism might make things...life is challenging and crazy anyway. I can't constantly try to predict and manage every little aspect of life. I can't be the event coordinator 24/7 for our family, because life is unpredictable.
I came home from my trip refreshed and with a new attitude, but not because I had this really relaxing and rewarding experience, but because I had an egg-salad style epiphany that I can't control autism and autism isn't always controlling me. I am learning you are going to crack a few eggs every now and again with or without autism.
Thursday, April 14, 2011
The Evolution of Autism Motherhood
I remember when I first suspected my oldest son had some form of Autism. To be honest, I had never really heard of Aspergers Syndrome and only had those stereotypical mindsets about autism (boy would I learn quickly). I remember the exact moment that the color drained from my face.
My oldest son had always had some problems behaviorally and was in all honesty, eccentric. I would bring him into the pediatrician's office and it began to become so frequently they needed a revolving door for us. I always got the same professional answer over the years everytime I said..."My son doesn't act like the other children"..."Why can't he tie his shoes? He is seven!"..."Is it normal for him to never use the bathroom in public and wet the bed still? He is 11!"..."Is it normal for him to play in his room for hours and never associate with the rest of the family?". He's fine...it's just a phase.
I was sitting in the living room about a year and a half ago on my laptop and I saw those news feeds that come across your homepage..."Plane lands on side of runway"..."President Obama preparing for summit"..."Four members of the same family all suffer from the same disorder". Back up. What? This peaked my interest. How could four members of the same immediate family all have the same disorder. I clicked on it. "A mother, father, and their two sons are all suffering from Asperger's Syndrome", it read. Asperger's Syndrome? What in the world is that? Curious as I always am I began typing it in the search engine and link after link popped up. I began reading and minutes turned to hours and hours turned to sadness and then my eyes filled with tears. I shut my laptop and began to panic. How could something like this have escaped me? How could it "just be a phase" or "he'll grow out of it"? It was 10:00pm and everyone was asleep and I remember just pacing and feeling like I couldn't breathe. I picked up the phone and called my mother. "Have you ever heard of Asperger's Syndrome?", I asked frantically. She said she had vaguely heard of it but didn't know a lot about it.
First thing the next morning I transferred my son to a different pediatrician and began to tell them my suspicions and immediately he was set up for a referral to a child psychologist. After 12 hours of intense testing...the verdict was in. High functioning Autism, probably Aspergers. Devastated. Absolutely devastated. I was faced with so many emotions at that time...anger, sadness, depression, dispair. If there was something to feel bad about I could associate with it. I stayed like this for quite a while...just fighting mad and bitter as hell. I wanted to sue the original pediatricians for dismissing my worries and concerns. I invisioned myself walking in there and sliding the front glass open at the reception desk and screaming..."Grow out of it? You think he is going to grow out of it?!?!".
I was also a new mother to a new son in our family of four boys, so dealing with the stress of finding out your oldest child has a devastating diagnosis and taking care of a newborn was about to do me in. As the months progressed I began to settle into the idea of now knowing that there was a name for the peculiar behaviors my child had exhibited. I began to understand him better and began to understand the disorder and the autism spectrum with a clearer understanding.
As the year progressed we began to see that our baby was not progressing developmentally and was not meeting his milestones. Immediately we began to take notice that something wasn't quite right. In fear of having to deal with years and years of no one listening to me with my oldest son, I began to take a proactive stance with my baby's pediatricians. I pleaded that something was wrong. "He is eight months old and can't roll over" "He is 11 months old and can't sit up by himself". "He doesn't babble". The final straw came when at 21 months old my baby still couldn't walk. I started researching again and knew immediately what we were dealing with...I asked for every test there was genetically and behaviorally. The answers came swiftly this time...he had a chromosome mutation and Autism.
History repeats itself, yet this time I was more aware of the problem and knew to advocate and speak up for my son. As the last year and last few months have passed by I have slowly noticed the anger slipping away and there isn't even one drop of bitterness left in me. It's more like those things have been replaced with a passion...a burning desire to make my children stronger. I want to make up for the years my oldest lost in therapies and developmental help. I want to help others. I want to prevent this from happening to someone else. All the gut-wrenching feelings have metamorphasied into something beautiful...a greater love and respect for my children. The tears and sadness have been replaced with acceptance and laughter. I am learning to view the world from a different angle and to celebrate even the smallest of accomplishments. When I think back on things in my life that used to upset me or stress me to my limits, it all seems so trivial now in the grand scheme of things.
They call Autism a spectrum disorder for a reason...not only are there many labels and classifications for the disorder, but also for the emotions associated with it. I look back on all the feelings I have felt from the first diagnosis until now and it looks like a virtual rainbow in my mind...from anxiety, to anger, to sadness, to helplessness, to frustration, to acceptance, to happiness, and finally the rainbow stretches all the way down to peace. I have evolved.
My oldest son had always had some problems behaviorally and was in all honesty, eccentric. I would bring him into the pediatrician's office and it began to become so frequently they needed a revolving door for us. I always got the same professional answer over the years everytime I said..."My son doesn't act like the other children"..."Why can't he tie his shoes? He is seven!"..."Is it normal for him to never use the bathroom in public and wet the bed still? He is 11!"..."Is it normal for him to play in his room for hours and never associate with the rest of the family?". He's fine...it's just a phase.
I was sitting in the living room about a year and a half ago on my laptop and I saw those news feeds that come across your homepage..."Plane lands on side of runway"..."President Obama preparing for summit"..."Four members of the same family all suffer from the same disorder". Back up. What? This peaked my interest. How could four members of the same immediate family all have the same disorder. I clicked on it. "A mother, father, and their two sons are all suffering from Asperger's Syndrome", it read. Asperger's Syndrome? What in the world is that? Curious as I always am I began typing it in the search engine and link after link popped up. I began reading and minutes turned to hours and hours turned to sadness and then my eyes filled with tears. I shut my laptop and began to panic. How could something like this have escaped me? How could it "just be a phase" or "he'll grow out of it"? It was 10:00pm and everyone was asleep and I remember just pacing and feeling like I couldn't breathe. I picked up the phone and called my mother. "Have you ever heard of Asperger's Syndrome?", I asked frantically. She said she had vaguely heard of it but didn't know a lot about it.
First thing the next morning I transferred my son to a different pediatrician and began to tell them my suspicions and immediately he was set up for a referral to a child psychologist. After 12 hours of intense testing...the verdict was in. High functioning Autism, probably Aspergers. Devastated. Absolutely devastated. I was faced with so many emotions at that time...anger, sadness, depression, dispair. If there was something to feel bad about I could associate with it. I stayed like this for quite a while...just fighting mad and bitter as hell. I wanted to sue the original pediatricians for dismissing my worries and concerns. I invisioned myself walking in there and sliding the front glass open at the reception desk and screaming..."Grow out of it? You think he is going to grow out of it?!?!".
I was also a new mother to a new son in our family of four boys, so dealing with the stress of finding out your oldest child has a devastating diagnosis and taking care of a newborn was about to do me in. As the months progressed I began to settle into the idea of now knowing that there was a name for the peculiar behaviors my child had exhibited. I began to understand him better and began to understand the disorder and the autism spectrum with a clearer understanding.
As the year progressed we began to see that our baby was not progressing developmentally and was not meeting his milestones. Immediately we began to take notice that something wasn't quite right. In fear of having to deal with years and years of no one listening to me with my oldest son, I began to take a proactive stance with my baby's pediatricians. I pleaded that something was wrong. "He is eight months old and can't roll over" "He is 11 months old and can't sit up by himself". "He doesn't babble". The final straw came when at 21 months old my baby still couldn't walk. I started researching again and knew immediately what we were dealing with...I asked for every test there was genetically and behaviorally. The answers came swiftly this time...he had a chromosome mutation and Autism.
History repeats itself, yet this time I was more aware of the problem and knew to advocate and speak up for my son. As the last year and last few months have passed by I have slowly noticed the anger slipping away and there isn't even one drop of bitterness left in me. It's more like those things have been replaced with a passion...a burning desire to make my children stronger. I want to make up for the years my oldest lost in therapies and developmental help. I want to help others. I want to prevent this from happening to someone else. All the gut-wrenching feelings have metamorphasied into something beautiful...a greater love and respect for my children. The tears and sadness have been replaced with acceptance and laughter. I am learning to view the world from a different angle and to celebrate even the smallest of accomplishments. When I think back on things in my life that used to upset me or stress me to my limits, it all seems so trivial now in the grand scheme of things.
They call Autism a spectrum disorder for a reason...not only are there many labels and classifications for the disorder, but also for the emotions associated with it. I look back on all the feelings I have felt from the first diagnosis until now and it looks like a virtual rainbow in my mind...from anxiety, to anger, to sadness, to helplessness, to frustration, to acceptance, to happiness, and finally the rainbow stretches all the way down to peace. I have evolved.
Tuesday, April 12, 2011
"Peep Show"
I just got back from Walmart. I could probably end this entry right here and not go one word further and you guys could probably figure out where this might be going...but...here it goes.
I am a Wal-martian...I can't... help it. I try to avoid it but in America there is this imaginary magnet in a Wal-mart shopping center that gravitates mothers in. I am a firm believer if you weren't on the Autism Spectrum initially, after an hour in Wal-mart you will leave with a clinical diagnosis of ASD and you will need some deep pressure therapy. So I totally get it when my ASD child freaks out in there. But...that doesn't stop me...oh no...I think I am gonna when this battle. I just keep coming back for more. And...he wore his famous T-shirt today...the one that reads..."I am not naughty. I have Autism. Please be Understanding." The problem is when sitting in the shopping cart the cart belt covers the line that says "I am Autistic". So all the shirt reads to some stranger is..."I am not Naughty. Please Be Understanding". Does anyone else see the humor here?
So here is this toddler wailing and thrashing around in the cart...screaming at the top of his lungs. Gummy bears flying everywhere. I opened some marshmellow Peeps that were in the middle of an aisle on an Easter display and shoved one in his mouth and he pulled it out and threw it in the floor. Everyone is staring now...not sure if it is because of the GINORMOUS meltdown or because they saw me shove a Peep in my sons mouth, but I digress. Anyhoo, I pick the line with the lady that loaded all her stuff on the belt and then forgot something (story of my life). I had already put a third of my stuff on the belt behind hers so I couldn't get in another lane and here is Logan just screaming his head off...face red as a beet and I am going..."its ok...we're almost done....don't cry...that's it...it's going to be ok...just another minute (in my yoga voice).
Then it happened like the snap of a branch from an oak tree during a hurricane. The lady behind me bent down and looked my son in the face and grabbed him by the shoe and said "Somebody sure is spoiled". I said, "No, he has Autism. Think before you speak." She then said the same thing everyone always says when I respond that way..."Oh...I didn't know". Of course you didn't, Moron, the belt was covering up his t-shirt (insert sarcasm). Why would she know? Oh, I know...because he wasn't drooling or having a seizure or solving a crime for our local police department using Morse Code. Oh the stereotypes. Maybe it was because I didn't have his medical records taped to the back of my shirt along with all of his therapy treatment plans. I am really not sure why she "didn't know". Next time I will not even bother to explain...I will just keep one extra "Peep" on hand.
Wednesday, April 6, 2011
The Road Less Traveled...
Throughout my life I have referenced the poem, "The Road Not Taken" by Robert Frost. It is a beautifully written poem about making a difficult choice. I have referenced this poem many times in my life when I couldn't choose the right path or when I was unsure of my next step. There have been situations that seemed difficult at the time but in referencing this poem I realized that the more difficult path is sometimes the better path to take. I have even referenced this poem when giving out relationship advice to a girlfriend who could not choose between two men. I had no idea from my first glance at this poem in a junior high English class where the "path" of this poem would take me.
Robert Frost, himself, said that this poem was written for a friend who had gone off to war and didn't feel he had made the right decision and that decision had plagued him for the rest of his life. Several interpretations have been made about this poem including the meaning, personification, and references to literary devices...
meaning:
The literal meaning of this poem by Robert Frost is pretty obvious. A traveler comes to a fork in the road and needs to decide which way to go to continue his journey. After much mental debate, the traveler picks the road "less traveled by."
The figurative meaning is not too hidden either. The poem describes the tuogh choices people stand for when traveling the road of life. The words "sorry" and "sigh" make the tone of poem somewhat gloomy. The traveler regrets leaves the possibilities of the road not chosen behind. He realizes he probably won't pass this way again.
devices:
There are plenty literary devices in this poem to be discovered. One of these is antithesis. When the traveler comes to the fork in the road, he wishes he could travel both. Within the current theories of our physical world, this is a non possibility (unless he has a split personality). The traveler realizes this and immediately rejects the idea.
Yet another little contradiction are two remarks in the second stanza about the road less traveled. First it's described as grassy and wanting wear, after which he turns to say the roads are actually worn about the same (perhaps the road less traveled makes travelers turn back?).
personification:
All sensible people know that roads don't think, and therefore don't want. They can't. But the description of the road wanting wear is an example of personification in this poem. A road actually wanting some as a person would. However: some believe this to be incorrect and believe "wanting wear" is not a personification, but rather older English meaning "lacking". So it would be "Because it was grassy and lacked wear;".
I can't even count the number of times on both hands that I have referenced this poem in my everyday life throughout my life...relationships, family circumstances, children, college, career changes, life changes...but, lately, it has become my means of explaining Autism. I know, right? Autism? Strange as it may sound...this poem has a way of educating someone on how the autistic brain might work. I love to find a deeper meaning in literature for a completely different purpose than the author intended.
People are uneducated and ignorant when it comes to Autism. It is a disability...not an inability. They think Autism is mental retardation. They believe Autism means weird, strange, deaf, and mute. It shouldn't be too hard to understand. Autism is a disorder (not disease) in which the brain is wired differently from neurotypical minds. It means that a person with a neurotypical mind might go about their learning process by acheiving their goals in a point A to point B process. Autistic people take the long road home, so to speak. It does not mean they are any less intelligent or that they are disabled. It just means that they take the scenic route...or the road less traveled. The outcomes are the same. They just take a different path to reach their destination.
The poem "The Road Not Taken" describes two paths that come together and meet in a fork in the road. One of the paths is short, well-beaten, aesthetically pleasing, much shorter, and the path that is publicly acceptable. The other path is over-grown, cluttered, vacant, difficult and treacherous, and extremely lengthy to travel. Both roads end up at the same fork in the road. This is a fine explanation of the neurotypical mind versus the autistic mind...very different but equally intelligent. Autism is the road less traveled but the I think it is the path in which the best lessons are learned.
The Road Not Taken
By Robert Frost
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that, the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
two roads diverged in a wood, and I --
I took the one less traveled by,
And that has made all the difference.
Robert Frost, himself, said that this poem was written for a friend who had gone off to war and didn't feel he had made the right decision and that decision had plagued him for the rest of his life. Several interpretations have been made about this poem including the meaning, personification, and references to literary devices...
meaning:
The literal meaning of this poem by Robert Frost is pretty obvious. A traveler comes to a fork in the road and needs to decide which way to go to continue his journey. After much mental debate, the traveler picks the road "less traveled by."
The figurative meaning is not too hidden either. The poem describes the tuogh choices people stand for when traveling the road of life. The words "sorry" and "sigh" make the tone of poem somewhat gloomy. The traveler regrets leaves the possibilities of the road not chosen behind. He realizes he probably won't pass this way again.
devices:
There are plenty literary devices in this poem to be discovered. One of these is antithesis. When the traveler comes to the fork in the road, he wishes he could travel both. Within the current theories of our physical world, this is a non possibility (unless he has a split personality). The traveler realizes this and immediately rejects the idea.
Yet another little contradiction are two remarks in the second stanza about the road less traveled. First it's described as grassy and wanting wear, after which he turns to say the roads are actually worn about the same (perhaps the road less traveled makes travelers turn back?).
personification:
All sensible people know that roads don't think, and therefore don't want. They can't. But the description of the road wanting wear is an example of personification in this poem. A road actually wanting some as a person would. However: some believe this to be incorrect and believe "wanting wear" is not a personification, but rather older English meaning "lacking". So it would be "Because it was grassy and lacked wear;".
I can't even count the number of times on both hands that I have referenced this poem in my everyday life throughout my life...relationships, family circumstances, children, college, career changes, life changes...but, lately, it has become my means of explaining Autism. I know, right? Autism? Strange as it may sound...this poem has a way of educating someone on how the autistic brain might work. I love to find a deeper meaning in literature for a completely different purpose than the author intended.
People are uneducated and ignorant when it comes to Autism. It is a disability...not an inability. They think Autism is mental retardation. They believe Autism means weird, strange, deaf, and mute. It shouldn't be too hard to understand. Autism is a disorder (not disease) in which the brain is wired differently from neurotypical minds. It means that a person with a neurotypical mind might go about their learning process by acheiving their goals in a point A to point B process. Autistic people take the long road home, so to speak. It does not mean they are any less intelligent or that they are disabled. It just means that they take the scenic route...or the road less traveled. The outcomes are the same. They just take a different path to reach their destination.
The poem "The Road Not Taken" describes two paths that come together and meet in a fork in the road. One of the paths is short, well-beaten, aesthetically pleasing, much shorter, and the path that is publicly acceptable. The other path is over-grown, cluttered, vacant, difficult and treacherous, and extremely lengthy to travel. Both roads end up at the same fork in the road. This is a fine explanation of the neurotypical mind versus the autistic mind...very different but equally intelligent. Autism is the road less traveled but the I think it is the path in which the best lessons are learned.
The Road Not Taken
By Robert Frost
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that, the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
two roads diverged in a wood, and I --
I took the one less traveled by,
And that has made all the difference.
Tuesday, April 5, 2011
The Magic Pill...
I was sent a poll on facebook this week that read..."If there was a magic pill that could cure autism would you want your child to take it?". I changed my answer three or four times and finally chose the answer "Yes, because my child deserves to be normal like everyone else.", but the more I have thought about it I really wish there was a pill that I could give the rest of the world that would make them more understanding and less judgemental.
Why should my son have to take a pill to alter who he is? Maybe the magic pill could cure ignorance, scrutiny, condemnation, and heartlessness. Althought autism isn't pretty, it is who he is. There is a part of me that wishes my child was developmentally on target and could communicate better, don't get me wrong. But if autism is a part of who he is then I am not so sure I want to change the person that he is...because he is quite special.
If I gave my son a "magic pill" that cured autism I might not get the chance to see him dance to the beat of the washing machine. Where others hear water and agitation, my son hears a melody and sways to the swish and hum of the machine. If my son were to take the "magic pill" I am afraid he would lose that angel face...the face that is so pure and innocent when he is staring out the window of our french door. That magic pill could take away that sweet voice that refers to himself as "Spongebob".
Is life difficult? Yes. Is life a challenge? Yes. Do I ask God why did he choose my son and my family for autism? Yes...quite a bit. But would I change him? I couldn't be sure I would be any happier with the outcome of a "normal" child. Does he deserve to live a life of normalcy? Of course. But he also deserves to live in a world where he can be himself and no one turns to stare.
Why should my son have to take a pill to alter who he is? Maybe the magic pill could cure ignorance, scrutiny, condemnation, and heartlessness. Althought autism isn't pretty, it is who he is. There is a part of me that wishes my child was developmentally on target and could communicate better, don't get me wrong. But if autism is a part of who he is then I am not so sure I want to change the person that he is...because he is quite special.
If I gave my son a "magic pill" that cured autism I might not get the chance to see him dance to the beat of the washing machine. Where others hear water and agitation, my son hears a melody and sways to the swish and hum of the machine. If my son were to take the "magic pill" I am afraid he would lose that angel face...the face that is so pure and innocent when he is staring out the window of our french door. That magic pill could take away that sweet voice that refers to himself as "Spongebob".
Is life difficult? Yes. Is life a challenge? Yes. Do I ask God why did he choose my son and my family for autism? Yes...quite a bit. But would I change him? I couldn't be sure I would be any happier with the outcome of a "normal" child. Does he deserve to live a life of normalcy? Of course. But he also deserves to live in a world where he can be himself and no one turns to stare.
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