A few days ago CJ and I were off to another doctor's appointment, while walking to the car he noticed the Autism Awareness sticker.
"Mommy, what's that for?"
Nonchalantly I replied, "Oh, that helps people become more aware of autism."
"Mommy, what's autism?
Just like that, the question I thought I had a couple more years to answer presented itself. Should I regurgitate everything I've read in books? Should I walk slowly to the drivers side, hoping he forgets? Should I offer to buy him ANY toy in Toys R' Us in exchange for him never asking me that question again? Damn it!! Why didn't he ask me where babies come from, I'm pretty sure I could answer that question easier then this one. After a brief, kid sized explanation he says "Why does that happen to some brains Mommy?"
"I wish I knew baby; I wish I knew."
So here I am, sitting in the doctor's office watching an EEG technician attach wires to CJ's head hoping somewhere on the screen of squiggly lines produced by my son's brain waves I will finally be able to answer the question... why. You know, 4 years ago I wanted to know why for my own selfish reasons. Why him? Why us? But now the search for why has an urgency I never though about before, now I NEED to know why because I have to explain it to the person living with it on a level I will never understand.
I know everything happens for a reason. I also know eventually that reason is revealed but believing there's a reason doesn't mean I can't pose the question...Why? And how do I explain my philosophical beliefs to a child? I just think.....hope.....pray that along the way, as he's evaluated by all these doctors and specialist, somewhere, perhaps hanging on their walls with their degrees and accreditation's and doctor of the year awards I'll finally find out why we were chosen for this journey.
I mean really, I go to every seminar, every workshop, EVERYTHING that has ANYTHING to do with autism because something has to work....right? Someone, somewhere has to have an answer to all....some...at least one of my questions...right? Honestly, how long can my cries for help be ignored? I'm doing everything I'm supposed to do and yet here we are having diagnostic test number, I don't even know anymore, still with more questions then answers.
I just keep hoping one day we'll walk into a doctor's office and I'll say his name and hand over all of my copies of prior test results and the doctor will say, "I've been waiting for you." Then he'll pull out a book titled, "CJ The Owners Manual". Filled with everything I every wanted to know. The "how to's", the "never do's" and the all elusive, "this is why both of you were chosen". I know, I know AHA moments are never that cut and dry.
My AHA moment needs to hurry because he's getting older and if neuro-typical children are being bullied on a daily basis what's going to happen when he's on the playground. How do I get him to understand that it's great to be different and special when all he wants is to fit in and be like everyone else.
{Sigh} So how will I explain something that has no explanation? I can't. However I can make sure he's happy and knows how much he's loved. I'll tell him everyone has a purpose because God doesn't make mistakes and he never gives us more than we can handle. I'll tell him that I can't imagine him calling anyone else "Mommy" because I can't imagine anyone else loving him more than I do.
As for my explanation of why me, to quote "The Lord of the Rings" "This task was appointed to me; and if I can't do it no one else can."
Friday, April 8, 2011
Tuesday, February 8, 2011
Introducing....Gratitude
CJ was two (ish) years old when I took him to see a developmental behavioral pediatrician. As there is no parking close by; I parked 12 blocks away, loaded him into the stroller and started to speed walk hoping we wouldn't be late for this appointment. I would hate to go back on the year long wait list. I mentally go over everything I plan to say and ask while pointing out things CJ doesn't seem to notice (but should).
{mentally} "He stopped all verbal communication at 18 months."
"Look CJ, a big brown dog!"
{mentally} "Will he need medication?"
I wonder if these periods of useful schizophrenic dialogue are universal for mother's or maybe just me.
CJ takes everything in; silently.
Phew!! We made it with five minutes to spare. In the overflowing waiting area I get all the necessary (redundate) forms, try to catch my breathe and locate a seat all while manuvering a stroller.
"Nana Mommy peas"
"One banana coming right up"
Twenty minutes later all forms are completed, CJ is happily eating his banana and I'm able to sit still and look around. What I see resonants in my soul to this very day.
Children of various ages with various developmental, behavioral and mental deficits. A little boy wearing a helmet and repeatedly hitting his head against the wall. A little girl rolling around on the floor screaming. A little boy, with protective gear on his arms, trying to bite himself. The parents or caregivers looking completely exhausted and obviously numb to the behaviors I find so shocking.
I realize I'm staring and look away; full of shame. How could I come into this room and not notice the degree of suffering? Am I that self absorbed in my own world that I no longer notice other people...other children? I look at the faces of the parents and caregivers silently offering a smile and an understanding glance, knowing I will never comprehend what they go through on a daily basis. Then I focus on CJ. Sitting quietly, peeling and eating his banana. He has no self harming tendencies. He can feed himself. His mental state, comparatively, intact. He looks up at me and smiles simutanously mashing banana through his teeth. I smile and close my eyes as they fill with tears. I silently say:
"Father, if this is all I have to deal with, Thank You because THIS I can handle...but you knew that didn't you?"
A door opens, the nurse calls CJ's name. We go through the door with a new found calm reserve and the knowledge that whatever happens He didn't bring us this far to leave us.
{mentally} "He stopped all verbal communication at 18 months."
"Look CJ, a big brown dog!"
{mentally} "Will he need medication?"
I wonder if these periods of useful schizophrenic dialogue are universal for mother's or maybe just me.
CJ takes everything in; silently.
Phew!! We made it with five minutes to spare. In the overflowing waiting area I get all the necessary (redundate) forms, try to catch my breathe and locate a seat all while manuvering a stroller.
"Nana Mommy peas"
"One banana coming right up"
Twenty minutes later all forms are completed, CJ is happily eating his banana and I'm able to sit still and look around. What I see resonants in my soul to this very day.
Children of various ages with various developmental, behavioral and mental deficits. A little boy wearing a helmet and repeatedly hitting his head against the wall. A little girl rolling around on the floor screaming. A little boy, with protective gear on his arms, trying to bite himself. The parents or caregivers looking completely exhausted and obviously numb to the behaviors I find so shocking.
I realize I'm staring and look away; full of shame. How could I come into this room and not notice the degree of suffering? Am I that self absorbed in my own world that I no longer notice other people...other children? I look at the faces of the parents and caregivers silently offering a smile and an understanding glance, knowing I will never comprehend what they go through on a daily basis. Then I focus on CJ. Sitting quietly, peeling and eating his banana. He has no self harming tendencies. He can feed himself. His mental state, comparatively, intact. He looks up at me and smiles simutanously mashing banana through his teeth. I smile and close my eyes as they fill with tears. I silently say:
"Father, if this is all I have to deal with, Thank You because THIS I can handle...but you knew that didn't you?"
A door opens, the nurse calls CJ's name. We go through the door with a new found calm reserve and the knowledge that whatever happens He didn't bring us this far to leave us.
Sunday, January 30, 2011
A Letter to my sons
Some of you might have seen this post on my facebook page. I decided to post it here as well.
November 8, 2001 and August 6, 2004 are two dates I will never forget. They were days filled with intense pain and unspeakable happiness; paralyzing fear and unyielding strength. To both of you it’s your birthdays, a day for parties, cake, candy and toys. For me it’s much more. Those two days taught me I could do anything, once I forgot about fear. These two dates empowered me for the rest of my life.
AJ you taught me I am stronger than I give myself credit for. And, no matter how much “life” hurts, keep pushing towards the goal. Because at the end of the tears and pain is a brand new beginning.
CJ you taught me the true meaning of patience and unconditional love. Seeing the world through your unique eyes is an experience I am grateful to be a part of. It’s matched only by teaching you something new and enhanced greatly when you say “Hi Mommy. How was your day?”
Through your births I found my purpose, being your Mom gives me joy and true happiness. It’s the reason why my heart beats and a smile will always be on my face. No matter what you do, who you become or where you go; know that the both of you are my greatest accomplishments and I will always love and cherish you. I thank God for the blessing of being your parent.
I love you to the moon and back.
November 8, 2001 and August 6, 2004 are two dates I will never forget. They were days filled with intense pain and unspeakable happiness; paralyzing fear and unyielding strength. To both of you it’s your birthdays, a day for parties, cake, candy and toys. For me it’s much more. Those two days taught me I could do anything, once I forgot about fear. These two dates empowered me for the rest of my life.
AJ you taught me I am stronger than I give myself credit for. And, no matter how much “life” hurts, keep pushing towards the goal. Because at the end of the tears and pain is a brand new beginning.
CJ you taught me the true meaning of patience and unconditional love. Seeing the world through your unique eyes is an experience I am grateful to be a part of. It’s matched only by teaching you something new and enhanced greatly when you say “Hi Mommy. How was your day?”
Through your births I found my purpose, being your Mom gives me joy and true happiness. It’s the reason why my heart beats and a smile will always be on my face. No matter what you do, who you become or where you go; know that the both of you are my greatest accomplishments and I will always love and cherish you. I thank God for the blessing of being your parent.
I love you to the moon and back.
Sunday, January 23, 2011
Four little words
“Congratulations!! It’s a boy!” Four little words I waited 9 and a ½ months to hear. I remember the day after CJ was born, I would stare at him with wonder and ask: “Who are you going to be?” In response his mouth opened forming the perfect O and gives the newborn yawn all parents know and immediately fall in love with. In that moment I experienced love and joy in its purest form. The world is perfect. My breath is taken away; and it doesn't matter who he becomes because the possibilities are endless.
Fast forward 18 months, “Mama, Dada” and other evidence of emerging baby talk are abruptly replaced by grunts and tugging on my clothes while pointing to a desired object. Joking that he has OCD when he begins to line up all his cars... and stuffed animals.... and trains... and crayons... and anything else he can pick up; becomes concern when he has severe tantrums and meltdowns should you move one item from the line up. Concern becomes alarm when he stops responding to his name and everyone around him. Alarm becomes our somber reality one day in the doctor’s office with four little words, “Your son has autism.” Immediately my mind starts thinking of a thousand things all at once. I'm only hearing bits and pieces of the conversation with the doctor but when I manage to focus on his words, none of his information sounds promising. He mentions the need for speech therapy to "possibly" recover language lost. “What do you mean he may never tell me he loves me?!” “Never hug me?!” How, in what seemed like one day, did 18 months of learning, laughter and promise disappear? I start to research autism and book after book I start to realize the possibilities for his future are getting dimmer. New words and phrases invade my life, instead of “Mommy & Me” classes and play dates I start to look for social interaction groups taught by play therapist. Toys, once used for fun, are now tools that will theoretically encourage speech and launch imagination. “Why did this happen?” Becomes one of many questions thrown into an abyss of unanswered questions because, as one doctor told me: “With autism there is no why. It just is.”
As we battle the effects of autism I find myself using words I never thought I would use to describe my experience as a Mom. Words like frustration; for the months we waited for an appointment with behavioral specialists, educational advisers, developmental pediatricians, pediatric neurologists and psychologist who spend 10 minutes with CJ then proceed to tell me all the things he can't do. The things he will never do. Oh, and by the way, when he’s 5 you're on your own with his educational opportunities because he’s not special enough for specialized schools but WAY too special for public schools. Making his education free; yes. Appropriate; not so much. Leaving me to wonder: "Why am I surrounded by experts and still have more questions than answers?"
Another word I am all too familiar with is anger. For the countless letters I wrote and phone calls I made and closed door after closed door as I beg for services CJ obviously needs to navigate his surroundings independently only to find out his needs were not considered in the state budget. Apparently giving him speech and occupational therapy would render the state bankrupt so the answer is a resounding NO!
Then there are times I have no words for my circumstances. The times I've left half eaten food on a restaurant table trying to scoop up my child (not to mention my dignity) from the floor after yet another unexplainable temper tantrum. Amidst stares and whispers from people who have no idea what I'm going through but swear they can do a better job.
No words.
For the well meaning family and friends who don't know what to say; but, feeling compelled to say something utter questions and comments like: “Did you try a multi-vitamin?” or “Just don't tell his teacher. Maybe they won't notice.” Really. You mean all this “autism stuff” will go away if I give him a Flintstones chewable? And No, I can't hide the fact that he’s autistic anymore then I could hide the fact that he’s a child.
No words.
Because sometimes tears are the only way to communicate how I feel, as I look at my son sound asleep in his bed with his favorite car held securely in hand and wonder: “What happens to him if I'm not here?” “Who will understand him?” “Who will care?”
Tears for the world I brought him into filled with "so called friends" who adored CJ before the diagnosis. Now they see us coming into the park and quickly grab their children as if autism is contagious. Or as one "friend" put it: "I don't want my son to deal with these grown up issues. You know their only kids for a little while." Indeed, I too have a child who would like to be a kid for a little while. Unfortunately, I have to teach him how to deal with grown ups whose acceptance of ignorance overshadows their ability for compassion.
These days I don't focus so much on what was lost but on what I gained as a Mom. I gained patience and understanding as I discover how CJ learns and try to adjust how I teach him. The ability to appreciate and celebrate small victories and discern which battles I can waive the white flag for. And the most important lesson of all the real meaning of unconditional love.
Last year CJ started Kindergarten and as we walk to the car I always ask the same questions, "How was your day?" "What did you do today?" I still remember the four little words he so proudly said, "I made a friend!" I think that was one of the happiest days of my life. The day I started to feel a word I hadn't felt in 4 and a half years. A word I thought was erased from my vocabulary forever. Dare I say it?.... Could it be?...Hope.
"Your child has autism." Four little words like "Will you marry me?" and "Congratulations, It's a boy!" that forever change the way you view the world.
Fast forward 18 months, “Mama, Dada” and other evidence of emerging baby talk are abruptly replaced by grunts and tugging on my clothes while pointing to a desired object. Joking that he has OCD when he begins to line up all his cars... and stuffed animals.... and trains... and crayons... and anything else he can pick up; becomes concern when he has severe tantrums and meltdowns should you move one item from the line up. Concern becomes alarm when he stops responding to his name and everyone around him. Alarm becomes our somber reality one day in the doctor’s office with four little words, “Your son has autism.” Immediately my mind starts thinking of a thousand things all at once. I'm only hearing bits and pieces of the conversation with the doctor but when I manage to focus on his words, none of his information sounds promising. He mentions the need for speech therapy to "possibly" recover language lost. “What do you mean he may never tell me he loves me?!” “Never hug me?!” How, in what seemed like one day, did 18 months of learning, laughter and promise disappear? I start to research autism and book after book I start to realize the possibilities for his future are getting dimmer. New words and phrases invade my life, instead of “Mommy & Me” classes and play dates I start to look for social interaction groups taught by play therapist. Toys, once used for fun, are now tools that will theoretically encourage speech and launch imagination. “Why did this happen?” Becomes one of many questions thrown into an abyss of unanswered questions because, as one doctor told me: “With autism there is no why. It just is.”
As we battle the effects of autism I find myself using words I never thought I would use to describe my experience as a Mom. Words like frustration; for the months we waited for an appointment with behavioral specialists, educational advisers, developmental pediatricians, pediatric neurologists and psychologist who spend 10 minutes with CJ then proceed to tell me all the things he can't do. The things he will never do. Oh, and by the way, when he’s 5 you're on your own with his educational opportunities because he’s not special enough for specialized schools but WAY too special for public schools. Making his education free; yes. Appropriate; not so much. Leaving me to wonder: "Why am I surrounded by experts and still have more questions than answers?"
Another word I am all too familiar with is anger. For the countless letters I wrote and phone calls I made and closed door after closed door as I beg for services CJ obviously needs to navigate his surroundings independently only to find out his needs were not considered in the state budget. Apparently giving him speech and occupational therapy would render the state bankrupt so the answer is a resounding NO!
Then there are times I have no words for my circumstances. The times I've left half eaten food on a restaurant table trying to scoop up my child (not to mention my dignity) from the floor after yet another unexplainable temper tantrum. Amidst stares and whispers from people who have no idea what I'm going through but swear they can do a better job.
No words.
For the well meaning family and friends who don't know what to say; but, feeling compelled to say something utter questions and comments like: “Did you try a multi-vitamin?” or “Just don't tell his teacher. Maybe they won't notice.” Really. You mean all this “autism stuff” will go away if I give him a Flintstones chewable? And No, I can't hide the fact that he’s autistic anymore then I could hide the fact that he’s a child.
No words.
Because sometimes tears are the only way to communicate how I feel, as I look at my son sound asleep in his bed with his favorite car held securely in hand and wonder: “What happens to him if I'm not here?” “Who will understand him?” “Who will care?”
Tears for the world I brought him into filled with "so called friends" who adored CJ before the diagnosis. Now they see us coming into the park and quickly grab their children as if autism is contagious. Or as one "friend" put it: "I don't want my son to deal with these grown up issues. You know their only kids for a little while." Indeed, I too have a child who would like to be a kid for a little while. Unfortunately, I have to teach him how to deal with grown ups whose acceptance of ignorance overshadows their ability for compassion.
These days I don't focus so much on what was lost but on what I gained as a Mom. I gained patience and understanding as I discover how CJ learns and try to adjust how I teach him. The ability to appreciate and celebrate small victories and discern which battles I can waive the white flag for. And the most important lesson of all the real meaning of unconditional love.
Last year CJ started Kindergarten and as we walk to the car I always ask the same questions, "How was your day?" "What did you do today?" I still remember the four little words he so proudly said, "I made a friend!" I think that was one of the happiest days of my life. The day I started to feel a word I hadn't felt in 4 and a half years. A word I thought was erased from my vocabulary forever. Dare I say it?.... Could it be?...Hope.
"Your child has autism." Four little words like "Will you marry me?" and "Congratulations, It's a boy!" that forever change the way you view the world.
Welcome to my life
Hello and welcome to my life and how I react to it. My name is Marsha J. and I figured writing is easier, not to mention cheaper, then therapy so here we go. For the past 13 years (2 years of dating, 11 years of marriage) I've shared my life with a great person, who I'm sure you will get to met later on. We have two sons, AJ is the oldest he's bright, full of energy, has my husband's face and my smile. I'm not sure where he got the ADD from but he's got that too. Our youngest is CJ, he's smart, sweet and looks like me right down to the dimples. The autism, well that was thrown in I guess to make my life more interesting. Yes, there are days I feel as though I've stepped into a mine field armed only with a sense of humor and prayer to help me make it through the day. Days when I can't seem to do anything right but I firmly believe God doesn't give you more then you can handle; so I guess I should be grateful that He thinks so highly of me.
I suppose by the end of this year I will have a new definition of myself but for now this is me....Just as I am.
I suppose by the end of this year I will have a new definition of myself but for now this is me....Just as I am.
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