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.
Sunday, January 30, 2011
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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