Wednesday, November 9, 2011
Mommy's Miracles: The Next Stage-Kindergarten-It's time.
Mommy's Miracles: The Next Stage-Kindergarten-It's time.: We're breaking down dealing with Autism into stages. The EI (Early Intervention) stage equals Ground Zero. There is no where to go but u...
The Next Stage-Kindergarten-It's time.
We're breaking down dealing with Autism into stages.
The EI (Early Intervention) stage equals Ground Zero. There is no where to go but up. We hope. This is a time when the child is labeled as a "Child with Delays."
The CPSE (Committee on Pre-School Special Education) Stage- The foundation has been laid by EI and Pre-School is giving the children there footing. It's at this age that we see the potential. We see the growth and personality. We see a child, not a baby. We see a "Child with a Disability."
Kindergarten-This signifies the moment when the paperwork changes, when the diagnosis becomes permanent. We feel the restriction of the label.
Calling the only Catholic Elementary School in with a Special Education program in Brooklyn, NY:
"What is the tuition for triplets entering Kindergarten?"
I hear a sharp intake of breathe. "Oh, bless you! Let me get the figures for you." I can almost hear the sound of cha-ching.
The woman on the phone fairly purred an amount that made my stomach twist. Not to be deterred, "I understand the school has a Special Education program. What are your capabilities?"
"What is the disability?"
"Autism."
"I'm sorry. We won't accept them. We can in no way give them the care that they need. The school is not equipped to handle that type of pers- that type of disability, a disability of that magnitude."
"What EXACTLY do you think they will need beyond normal education? They do not have cognitive delays."
"Well, they'll need speech. An interpreter, the teachers are not able to deal with children that don't speak and rock."
"My children are verbal. They do not rock uncontrollably. They like routine. One of them is not aware of danger, she'll have a para. Would you accept them if they all had a para?"
"No, I'm sorry. No. You can try this school. It's not Catholic but it's private. They are very elite and expensive. They may be willing to help. I'm sorry."
"Me too."
I dialed the number that she gave me.
"Can you tell me the cost of tuition for three children? And will you accept Autistics?"
"Yes of course. Is it just one child affected?"
"It's all three."
"Not a problem. The cost of education for one year is $45,000 without any of the additional fees, including that it will be about 48,000."
"Thank you. What are your class ratios?"
"All classes are 8:2:1."
"I'm sorry, I'm looking for 12:1:2 or 12:1:1 and Integrated 15. It's not a fit. Thank you for your help."
The label of Autism was suffocating me. We need to decide if we are going to try to get them reclassified.
We need to decide if we finally believe that these markers are always going to be here. We need to decide what is best for them-not what we want to see.
I am so disappointed that the Catholic schools here do not have Autistic programs. Our dream has always been to send our little ones to Catholic school in the little uniforms with the Barbie lunch boxes and book bags; to instill in them the faith that we have, to instill the values that we live at home.
I felt my eyes burning. "God, help me. I want them to have religion class every day. I want them to start and finish their school day with prayer. I want them know life like I did." Like I did-I stopped suddenly and picked up the phone.
I called the elementary school I went to, our parish school and shockingly the principal answered.
I explained what we were looking for and what we needed.
"Of course, we'll accept them. We will work with you on the IEP."
With a weight off my chest, I hung up and called the neurologist. It's time to re-evaluate. It's time to look into the neurologist's eyes and really hear her. Should they be reclassified or do we need to keep the designation of Autism? We're ready.
It's time.
The EI (Early Intervention) stage equals Ground Zero. There is no where to go but up. We hope. This is a time when the child is labeled as a "Child with Delays."
The CPSE (Committee on Pre-School Special Education) Stage- The foundation has been laid by EI and Pre-School is giving the children there footing. It's at this age that we see the potential. We see the growth and personality. We see a child, not a baby. We see a "Child with a Disability."
Kindergarten-This signifies the moment when the paperwork changes, when the diagnosis becomes permanent. We feel the restriction of the label.
Calling the only Catholic Elementary School in with a Special Education program in Brooklyn, NY:
"What is the tuition for triplets entering Kindergarten?"
I hear a sharp intake of breathe. "Oh, bless you! Let me get the figures for you." I can almost hear the sound of cha-ching.
The woman on the phone fairly purred an amount that made my stomach twist. Not to be deterred, "I understand the school has a Special Education program. What are your capabilities?"
"What is the disability?"
"Autism."
"I'm sorry. We won't accept them. We can in no way give them the care that they need. The school is not equipped to handle that type of pers- that type of disability, a disability of that magnitude."
"What EXACTLY do you think they will need beyond normal education? They do not have cognitive delays."
"Well, they'll need speech. An interpreter, the teachers are not able to deal with children that don't speak and rock."
"My children are verbal. They do not rock uncontrollably. They like routine. One of them is not aware of danger, she'll have a para. Would you accept them if they all had a para?"
"No, I'm sorry. No. You can try this school. It's not Catholic but it's private. They are very elite and expensive. They may be willing to help. I'm sorry."
"Me too."
I dialed the number that she gave me.
"Can you tell me the cost of tuition for three children? And will you accept Autistics?"
"Yes of course. Is it just one child affected?"
"It's all three."
"Not a problem. The cost of education for one year is $45,000 without any of the additional fees, including that it will be about 48,000."
"Thank you. What are your class ratios?"
"All classes are 8:2:1."
"I'm sorry, I'm looking for 12:1:2 or 12:1:1 and Integrated 15. It's not a fit. Thank you for your help."
The label of Autism was suffocating me. We need to decide if we are going to try to get them reclassified.
We need to decide if we finally believe that these markers are always going to be here. We need to decide what is best for them-not what we want to see.
I am so disappointed that the Catholic schools here do not have Autistic programs. Our dream has always been to send our little ones to Catholic school in the little uniforms with the Barbie lunch boxes and book bags; to instill in them the faith that we have, to instill the values that we live at home.
I felt my eyes burning. "God, help me. I want them to have religion class every day. I want them to start and finish their school day with prayer. I want them know life like I did." Like I did-I stopped suddenly and picked up the phone.
I called the elementary school I went to, our parish school and shockingly the principal answered.
I explained what we were looking for and what we needed.
"Of course, we'll accept them. We will work with you on the IEP."
With a weight off my chest, I hung up and called the neurologist. It's time to re-evaluate. It's time to look into the neurologist's eyes and really hear her. Should they be reclassified or do we need to keep the designation of Autism? We're ready.
It's time.
Mommy's Miracles: 2010 in Review
Mommy's Miracles: 2010 in Review: On December 11, 2009, the CEO was diagnosed with ASD (Autism Spectrum Disorder) and I felt like our little family unit was silenced with th...
2010 in Review
On December 11, 2009, the CEO was diagnosed with ASD (Autism Spectrum Disorder) and I felt like our little family unit was silenced with the diagnosis. I remember hearing the doctor say autism and feeling the blood rush to my head. The roaring sound of my blood silenced most of her words. Key words struck like lightening; non-verbal, self-abusive, MR. I couldn't understand. What did she mean institutionalize? My senses were heightened. It was cold out. My nose could smell the eminent snowfall, my skin had goosebumps from the chill. My eyes watered continuously from the bitterness of the air and the bitterness in my heart. I went home and I could barely speak into the phone and explain to my husband what the doctor had said. He was at work, about to go on the air. My voice kept cracking. I cleared my throat several times before I could mutter the word, Autism. I couldn't say anything more without sobbing and my husband had 40 seconds left before the song ended...We hung up with that word hanging between us, Autism.
Things moved so quickly after that. I remember certain days with a clarity that is striking in the details and some days are a blur.
On December 25th, my husband and I woke up early to listen to his coworkers' children take over the air waves for the holidays. It was one of the nicest events of the year. Since our children had been born, we were waiting for the day that we could hear our little future DJs do their first break. We were able to appreciate it for about 25 minutes before the reality that our daughters, Bugabuga and the CEO, did not speak and very possibly may never speak. We held hands each time the mic was opened. Holding on for dear life. We needed to turn off the radio but we just couldn't take that step. Each word fell with the impact of a knife in the heart. We whispered to each other...next year, next year...they will talk next year...
The frenzy of doctor visits commenced. I had to check my notes to confirm that I was bringing the right child with me to correct appointment. January 15th, and a psychologist is meeting with me and the girls. Four hours later, the psychologist is gone and I'm making another call to my husband. "Honey! Autism, both of them." He had to do a break. I hung up and cried. Our three daughters had Autism. Where do we go from here?
I started picking therapists brains. We didn't know what they needed and we couldn't even say the word Autism. Denial and anger were a constant companion. How do you ask for help if you can't even admit what is wrong?
We needed everyone but we couldn't say a word. To admit that we were devastated was unacceptable but we expected everyone to know and support us. February 1st, we send our girls to a special Autistic Program -school- for the first time. We loaded them on the bus and got on it with them so they would be comfortable. The Baby looked curious and a bit scared. Bugabuga squeezed her eyes shut for the whole ride. She shook continuously. The CEO screamed and cried. We soothed and she screamed louder. We were sweating by the time the bus arrived at the school 20 minutes later. We helped the staff unload the kids and sat in the lobby. We listened to the girls scream for the entire two hours. We stood at their classroom door and saw the CEO slamming her little body against the floor and Bugabuga shaking in her seat. The Baby sat quietly with her chin resting against her chest. Tears were silently plopping onto her shirt. We could barely stand the pain that we heard. We held hands and ignored the tears in each other's eyes. We ignored the fact that my husband had lost his job that morning. We could do this.
April 9th, Handsome was diagnosed. This time my husband was home and we could deal with this together. We held each other tightly and started the process to get him help.
Our girls are finishing their program next week. They are graduating into preschool and they are doing wonderfully. Better than all the doctors expected. They can call me Mommy now and they have a nice little arsenal of vocabulary. We are so proud. They worked so hard to be able to get to this point.We worked so hard.
I was reading the initial intake paperwork recently and I was struck by the CEO's first goal. " X will show emotion and smile and laugh appropriately." I look at her now and watch her sing a Barbie song on the top of her lungs. Smiling and laughing, falling on the floor in a fit of giggles. We did it. They are going to be okay.
Things moved so quickly after that. I remember certain days with a clarity that is striking in the details and some days are a blur.
On December 25th, my husband and I woke up early to listen to his coworkers' children take over the air waves for the holidays. It was one of the nicest events of the year. Since our children had been born, we were waiting for the day that we could hear our little future DJs do their first break. We were able to appreciate it for about 25 minutes before the reality that our daughters, Bugabuga and the CEO, did not speak and very possibly may never speak. We held hands each time the mic was opened. Holding on for dear life. We needed to turn off the radio but we just couldn't take that step. Each word fell with the impact of a knife in the heart. We whispered to each other...next year, next year...they will talk next year...
The frenzy of doctor visits commenced. I had to check my notes to confirm that I was bringing the right child with me to correct appointment. January 15th, and a psychologist is meeting with me and the girls. Four hours later, the psychologist is gone and I'm making another call to my husband. "Honey! Autism, both of them." He had to do a break. I hung up and cried. Our three daughters had Autism. Where do we go from here?
I started picking therapists brains. We didn't know what they needed and we couldn't even say the word Autism. Denial and anger were a constant companion. How do you ask for help if you can't even admit what is wrong?
We needed everyone but we couldn't say a word. To admit that we were devastated was unacceptable but we expected everyone to know and support us. February 1st, we send our girls to a special Autistic Program -school- for the first time. We loaded them on the bus and got on it with them so they would be comfortable. The Baby looked curious and a bit scared. Bugabuga squeezed her eyes shut for the whole ride. She shook continuously. The CEO screamed and cried. We soothed and she screamed louder. We were sweating by the time the bus arrived at the school 20 minutes later. We helped the staff unload the kids and sat in the lobby. We listened to the girls scream for the entire two hours. We stood at their classroom door and saw the CEO slamming her little body against the floor and Bugabuga shaking in her seat. The Baby sat quietly with her chin resting against her chest. Tears were silently plopping onto her shirt. We could barely stand the pain that we heard. We held hands and ignored the tears in each other's eyes. We ignored the fact that my husband had lost his job that morning. We could do this.
April 9th, Handsome was diagnosed. This time my husband was home and we could deal with this together. We held each other tightly and started the process to get him help.
Our girls are finishing their program next week. They are graduating into preschool and they are doing wonderfully. Better than all the doctors expected. They can call me Mommy now and they have a nice little arsenal of vocabulary. We are so proud. They worked so hard to be able to get to this point.We worked so hard.
I was reading the initial intake paperwork recently and I was struck by the CEO's first goal. " X will show emotion and smile and laugh appropriately." I look at her now and watch her sing a Barbie song on the top of her lungs. Smiling and laughing, falling on the floor in a fit of giggles. We did it. They are going to be okay.
Monday, October 31, 2011
Mommy's Miracles: Happiness is a choice.
Mommy's Miracles: Happiness is a choice.: I'm silenced when I hear about the real problems that my friends face. I see pictures of children in wheelchairs, breathing tubes, severe...
Happiness is a choice.
I'm silenced when I hear about the real problems that my friends face.
I see pictures of children in wheelchairs, breathing tubes, severe hypotonia. My heart clenches and I want to make things better. I want to reach out and just hug the parents that are in the pictures too. Sometimes smiling, sometimes caught in the moment of adjusting a child so that they look more comfortable, sometimes frowning and looking exhausted. My words of support fall far short.
"Whatever you need. I'm praying for you." Ever since my children have been born, I've become a watering pot. I will cry instantly when I perceive some one's pain. I saw a co-worker cry and tearfully said, "Why are we crying? What can I do?" She started laughing at the instantaneous tears streaming down my face.
I try to be so tough because we're dealing with a lot. There are times that it feels overwhelming to me. It's not that my children are low functioning, it's just the amount of children affected.
"Sit still. No rocking. Stop playing with your hair. No screaming! No hitting, no biting! Sit still. No rocking. Stop playing with your hair. No Screaming! Stop Screaming! Stop screaming! Why are you screaming? Why are you crying? Stop rocking. Stop rocking. Look at me. Look at me. STOP SCREAMING!!!!"
My life is filled with repetition. But it's filled with love too.
"Mommy, take a picture. I'm SMILING!"
"Mommy, I dancing. Oh, I'm a good dancer! Ha ha!"
"Mommy, uh, adaada, uh, dancing." "Say it again, I'm listening." "Mommy, you like dancing?"
"Mama! Dancing! Get down! Oh oh!"
The kids danced for an hour straight tonight. Laughing and giggling, falling over themselves, belly laughing and squealing with delight. We took pictures and recorded the moments, to be looked at randomly in the future.
I was able to relax and just laugh at their antics. I tried so hard to memorize what was happening and I'm writing it down now so that the feeling never slips away. It's so easy to remember the negative things, the memories are burned into my mind but these memories are the ones that I want to imprint into my mind.
Happiness is a choice.
I see pictures of children in wheelchairs, breathing tubes, severe hypotonia. My heart clenches and I want to make things better. I want to reach out and just hug the parents that are in the pictures too. Sometimes smiling, sometimes caught in the moment of adjusting a child so that they look more comfortable, sometimes frowning and looking exhausted. My words of support fall far short.
"Whatever you need. I'm praying for you." Ever since my children have been born, I've become a watering pot. I will cry instantly when I perceive some one's pain. I saw a co-worker cry and tearfully said, "Why are we crying? What can I do?" She started laughing at the instantaneous tears streaming down my face.
I try to be so tough because we're dealing with a lot. There are times that it feels overwhelming to me. It's not that my children are low functioning, it's just the amount of children affected.
"Sit still. No rocking. Stop playing with your hair. No screaming! No hitting, no biting! Sit still. No rocking. Stop playing with your hair. No Screaming! Stop Screaming! Stop screaming! Why are you screaming? Why are you crying? Stop rocking. Stop rocking. Look at me. Look at me. STOP SCREAMING!!!!"
My life is filled with repetition. But it's filled with love too.
"Mommy, take a picture. I'm SMILING!"
"Mommy, I dancing. Oh, I'm a good dancer! Ha ha!"
"Mommy, uh, adaada, uh, dancing." "Say it again, I'm listening." "Mommy, you like dancing?"
"Mama! Dancing! Get down! Oh oh!"
The kids danced for an hour straight tonight. Laughing and giggling, falling over themselves, belly laughing and squealing with delight. We took pictures and recorded the moments, to be looked at randomly in the future.
I was able to relax and just laugh at their antics. I tried so hard to memorize what was happening and I'm writing it down now so that the feeling never slips away. It's so easy to remember the negative things, the memories are burned into my mind but these memories are the ones that I want to imprint into my mind.
Happiness is a choice.
Saturday, October 1, 2011
Mommy's Miracles: Sometimes that's enough.
Mommy's Miracles: Sometimes that's enough.: "I have asthma, Mommy, so I cough sometimes." There are some illnesses that make a parent sad but don't shatter a home; like asthma. I th...
Sometimes that's enough.
"I have asthma, Mommy, so I cough sometimes."
There are some illnesses that make a parent sad but don't shatter a home; like asthma. I think asthma can be frightening when you watch a person struggle to breathe. I think it can be frightening to struggle to breathe. I know it is because I'm a severe asthmatic.
I don't remember my mother crying randomly because of my asthma. I don't remember my mother worrying that I would make friends. Asthma is common. It's accepted. It's not autism. I hope autism will be more accepted as the diagnosis becomes more of a fact rather than the exception.
"Argh!"
"Handsome, what's the matter? Use your words."
"Argh!" He yanks his hand free from me and I clamp on to his hand with my death grip.
"We never let go, NEVER! Hold hands!"
He's stuck. A kindly man gave him a balloon from his store. He wasn't expecting this. What if it flies away? He hates the feel of the ribbon on his skin. We're at an impasse.
"We need to keep walking if you want to go to the park. Come on, Handsome. You want to have fun, right?"
"Yesshh."
"Good! Let's go!"
We struggled continuously with the ribbon and the balloon until we reached the park. I was already tired and in pain. My hand never loosened its grip. I have severe carpal tunnel syndrome, a gift from my pregnancy with the girls. Maintaining that angle is excruciating but it's necessary.
I let go the instant we were safely in the playground. He ran from spot to spot, so excited to do everything but afraid to try anything. It was a nice moment to take a deep breathe...And then he began to tantrum.
He was laying on the floor screaming on the top of his lungs, thrashing his little body, so angry and frustrated.
"Tell me what you want to do."
"Argh! Argh! Argh!"
"Use your words. I don't understand you. I want to help you."
He begins to punch and kick me, grunting the whole time. I know EXACTLY what he wants. He wants to climb a part of the jungle gym that is more appropriate for an older kid. He doesn't understand that his little legs won't reach the next level. But even if they did, no way would I let him do that if he didn't verbalize his intent.
"I'm sorry. I'm confused. I don't know what you mean. What is ARGH?"
He points and says play.
"Play? That sounds wonderful. Let's do that, what do you want to do? I want to..."
"Play!"
"Say it again."
"I want to play!"
"Perfect! Let's go!"
He begins to climb a mountainous contraption, so large that I easily walk underneath it and place my hands up between the bars that he attempts to grip with his feet and when he misses, my hand bear his weight so that he does not fall through the bars. My heart is pounding but he makes it up to the top and smiles to himself. He made it.
The afternoon is filled with running and jumping, laughing and playing, ice cream and sprinklers. I see my husband beginning to unwind and I feel certain that the other shoe will drop. I can feel it in my bones.
"I want slide." Handsome runs up to the top of the steps, takes one look down the slide and throws his body backwards. My heart skips a beat. I can't reach him from there. Oh my God, there are kids coming up the stairs. Please God, no! Don't let anyone get hurt. Please!
I did the only thing I could do, I shriek, "Handsome! Oh God! Help me! Watch out! Move!"
I'm flying up the mountain that he painstakingly climbed; pushing children out of my way as I watch my son tumble down the steps and take out four kids in the process. He's never done this before; I hear the screams of pain and I'm stepping over each kid to get to my boy laying on top of a bigger boy. I reach down and see his laughing face. He not aware of the danger he was in. He's not aware of the injured kids. It's time to go home.
My hands are shaking as we grab a cab.
"Mommy, I don't want to go home." The CEO begins to scream. I hear the frantic note in her voice and I know that it's not a regular moment in time when a child wants to continue playing. It's a child that NEEDS to continue playing because we didn't count her down. We broke routine. Fuck. Not another one, not now. Handsome is rubbing his body against me seeking input. He's pulling at my arms to hug him and I'm looking into the CEO's eyes as they go blank and my heart squeezes. I've lost her.
She screams all the way home, rocking and slamming her body against me and Handsome. Pulling her hair and mine. I'm sweating as we herd them up the stairs. She's throwing herself to the ground. I can't do this right now, Handsome is trying to climb my body so that he can get input. I pick him up and squeeze. I feel him relax. He knows where he is now in space. I grab the other girls as I leave my husband to deal with the CEO's meltdown.
My husband leaves for work an hour later at 6:00pm. She's still screaming.
It's 2:30 in the morning and I hear Handsome scream because of his night terrors. I jump out of bed to reach him before he can wake up the others. I slowly calm him down using deep pressure techniques.
The clock reads 3:49 and I finally feel myself falling asleep.
The radio blares at 6 am. It's time to get the kids ready for school. I stumble around and all is running well.
"Bugabuga, can you get the wipes?" My husband innocently asks.
She waddles into the next room and just stands there.
"Bugabuga! Bugabuga!" No response. "CEO go help your sister."
She walks into the room and grabs the wipes out of her hands. Bugabuga begins to cry. We have to start over. We cannot move on until she repeats the routine and completes it.
We're running late. Bugabuga is not speaking, but rather making mewing noises.
"Let's go! I have to go to work. Come on guys! Let's get your socks and shoes on. Get your shoes."
I reach over to grab Bugabuga's shoes and pass them to her. She couldn't reach them. All hell breaks loose. She throws the shoes at my face and throws herself on the floor. "No, I do it!"
She's in a full tantrum. The bus should be here any minute.
"I need to get your shoes on. Let's go!"
"No! No! No!"
"Yes!"
I struggle to get her socks and shoes on. She tears them off as soon as I let go of her feet. I step away and let my husband jump in. We have an agreement. We will never let them do something that will impede their ability to function as an adult. In this instance, I feel that we should not let her start her routine over. She'll miss the bus and she will not always be able to restart. She needs to learn that sometimes she just needs to keep going. Life is not perfect. I watch my husband redirecting her. She's fighting us.
"I'm going to let her do it."
"No, we have to be consistent."
"She has to get the bus." We rarely disagree and I throw up my hands. I know where he's coming from but I know the end result. She'll get her way and I'll be the asshole while he's the hero.
After less than two hours of sleep, I'm not happy.
I head back into the shower because I've sweat so much that I need to change my clothes.
I feel so alone. Broken and beaten. Maybe I'm doing this wrong. Maybe I need to let them run right over me. Why the hell am I always choosing the fight rather than the easy road? I want the fucking easy route!
The bus is late. I'm dressed and ready to go. I kiss and hug everyone good bye. I struggle to keep my emotions in check. I hold my husband a bit tighter. He's my strength when I'm weak. It's been a rough 24 hours. Time to put on my happy face.
The train ride does nothing to calm me down. I'm so upset. I want to cry but I can never let go of my control. I sit down at my desk. Put my headphones on at the loudest volume, stare down at the numbers and close out the world for a few hours. I pour my heart into the numbers.
Sometimes that's enough.
There are some illnesses that make a parent sad but don't shatter a home; like asthma. I think asthma can be frightening when you watch a person struggle to breathe. I think it can be frightening to struggle to breathe. I know it is because I'm a severe asthmatic.
I don't remember my mother crying randomly because of my asthma. I don't remember my mother worrying that I would make friends. Asthma is common. It's accepted. It's not autism. I hope autism will be more accepted as the diagnosis becomes more of a fact rather than the exception.
"Argh!"
"Handsome, what's the matter? Use your words."
"Argh!" He yanks his hand free from me and I clamp on to his hand with my death grip.
"We never let go, NEVER! Hold hands!"
He's stuck. A kindly man gave him a balloon from his store. He wasn't expecting this. What if it flies away? He hates the feel of the ribbon on his skin. We're at an impasse.
"We need to keep walking if you want to go to the park. Come on, Handsome. You want to have fun, right?"
"Yesshh."
"Good! Let's go!"
We struggled continuously with the ribbon and the balloon until we reached the park. I was already tired and in pain. My hand never loosened its grip. I have severe carpal tunnel syndrome, a gift from my pregnancy with the girls. Maintaining that angle is excruciating but it's necessary.
I let go the instant we were safely in the playground. He ran from spot to spot, so excited to do everything but afraid to try anything. It was a nice moment to take a deep breathe...And then he began to tantrum.
He was laying on the floor screaming on the top of his lungs, thrashing his little body, so angry and frustrated.
"Tell me what you want to do."
"Argh! Argh! Argh!"
"Use your words. I don't understand you. I want to help you."
He begins to punch and kick me, grunting the whole time. I know EXACTLY what he wants. He wants to climb a part of the jungle gym that is more appropriate for an older kid. He doesn't understand that his little legs won't reach the next level. But even if they did, no way would I let him do that if he didn't verbalize his intent.
"I'm sorry. I'm confused. I don't know what you mean. What is ARGH?"
He points and says play.
"Play? That sounds wonderful. Let's do that, what do you want to do? I want to..."
"Play!"
"Say it again."
"I want to play!"
"Perfect! Let's go!"
He begins to climb a mountainous contraption, so large that I easily walk underneath it and place my hands up between the bars that he attempts to grip with his feet and when he misses, my hand bear his weight so that he does not fall through the bars. My heart is pounding but he makes it up to the top and smiles to himself. He made it.
The afternoon is filled with running and jumping, laughing and playing, ice cream and sprinklers. I see my husband beginning to unwind and I feel certain that the other shoe will drop. I can feel it in my bones.
"I want slide." Handsome runs up to the top of the steps, takes one look down the slide and throws his body backwards. My heart skips a beat. I can't reach him from there. Oh my God, there are kids coming up the stairs. Please God, no! Don't let anyone get hurt. Please!
I did the only thing I could do, I shriek, "Handsome! Oh God! Help me! Watch out! Move!"
I'm flying up the mountain that he painstakingly climbed; pushing children out of my way as I watch my son tumble down the steps and take out four kids in the process. He's never done this before; I hear the screams of pain and I'm stepping over each kid to get to my boy laying on top of a bigger boy. I reach down and see his laughing face. He not aware of the danger he was in. He's not aware of the injured kids. It's time to go home.
My hands are shaking as we grab a cab.
"Mommy, I don't want to go home." The CEO begins to scream. I hear the frantic note in her voice and I know that it's not a regular moment in time when a child wants to continue playing. It's a child that NEEDS to continue playing because we didn't count her down. We broke routine. Fuck. Not another one, not now. Handsome is rubbing his body against me seeking input. He's pulling at my arms to hug him and I'm looking into the CEO's eyes as they go blank and my heart squeezes. I've lost her.
She screams all the way home, rocking and slamming her body against me and Handsome. Pulling her hair and mine. I'm sweating as we herd them up the stairs. She's throwing herself to the ground. I can't do this right now, Handsome is trying to climb my body so that he can get input. I pick him up and squeeze. I feel him relax. He knows where he is now in space. I grab the other girls as I leave my husband to deal with the CEO's meltdown.
My husband leaves for work an hour later at 6:00pm. She's still screaming.
It's 2:30 in the morning and I hear Handsome scream because of his night terrors. I jump out of bed to reach him before he can wake up the others. I slowly calm him down using deep pressure techniques.
The clock reads 3:49 and I finally feel myself falling asleep.
The radio blares at 6 am. It's time to get the kids ready for school. I stumble around and all is running well.
"Bugabuga, can you get the wipes?" My husband innocently asks.
She waddles into the next room and just stands there.
"Bugabuga! Bugabuga!" No response. "CEO go help your sister."
She walks into the room and grabs the wipes out of her hands. Bugabuga begins to cry. We have to start over. We cannot move on until she repeats the routine and completes it.
We're running late. Bugabuga is not speaking, but rather making mewing noises.
"Let's go! I have to go to work. Come on guys! Let's get your socks and shoes on. Get your shoes."
I reach over to grab Bugabuga's shoes and pass them to her. She couldn't reach them. All hell breaks loose. She throws the shoes at my face and throws herself on the floor. "No, I do it!"
She's in a full tantrum. The bus should be here any minute.
"I need to get your shoes on. Let's go!"
"No! No! No!"
"Yes!"
I struggle to get her socks and shoes on. She tears them off as soon as I let go of her feet. I step away and let my husband jump in. We have an agreement. We will never let them do something that will impede their ability to function as an adult. In this instance, I feel that we should not let her start her routine over. She'll miss the bus and she will not always be able to restart. She needs to learn that sometimes she just needs to keep going. Life is not perfect. I watch my husband redirecting her. She's fighting us.
"I'm going to let her do it."
"No, we have to be consistent."
"She has to get the bus." We rarely disagree and I throw up my hands. I know where he's coming from but I know the end result. She'll get her way and I'll be the asshole while he's the hero.
After less than two hours of sleep, I'm not happy.
I head back into the shower because I've sweat so much that I need to change my clothes.
I feel so alone. Broken and beaten. Maybe I'm doing this wrong. Maybe I need to let them run right over me. Why the hell am I always choosing the fight rather than the easy road? I want the fucking easy route!
The bus is late. I'm dressed and ready to go. I kiss and hug everyone good bye. I struggle to keep my emotions in check. I hold my husband a bit tighter. He's my strength when I'm weak. It's been a rough 24 hours. Time to put on my happy face.
The train ride does nothing to calm me down. I'm so upset. I want to cry but I can never let go of my control. I sit down at my desk. Put my headphones on at the loudest volume, stare down at the numbers and close out the world for a few hours. I pour my heart into the numbers.
Sometimes that's enough.
Saturday, September 24, 2011
Parenthood
I force myself to watch this show. The actors are brilliant; so brilliant that I tear up several times per episode. The young actor that portrays a child with Asperger's Syndrome is so talented that I see glimpses of my children in his mannerisms and when I see him struggle to fit in, like in this week's episode, I feel my heart clench and I clear my throat repeatedly. It's just a show....
I watch the mother stand outside the fence watching her child sitting alone and I see the desperation in her eyes. The pain is obvious and I wonder if that's what I look like when I look at my kids playing alone in a crowded room.
My kids don't like loud noises. Overall, I think our home is fairly quiet for a house with four children. It's almost like the lack of speech is a weighty silence that is taking years to get break through. I think of the natural ebb and flow of sound that was part of my home before my children were born. Each room held a radio playing a different station, our love of music and radio in general apparent. A conversation that would mutually pause to listen to a perfect radio break was a common occurrence.
And then Bugabuga didn't start talking...
The speech therapist recommended that we turn off the radios. She felt that it could cause auditory confusion. My husband wanted to turn the radios off instantly but I couldn't bare it and I slowly turned one radio off at a time. The silence was deafening. There was no babbling and giggling. There was nothing except the sound of my voice-constantly. And when my voice was silenced from overuse, the only noise was a small mobile that was the only toy that was quiet enough that it didn't make them cry.
I close my eyes some days and remember the absolute terror that I lived with worrying that my babies would not speak. I relive the hours of the CEO flinging her body against the wall and the feeling of helplessness. I think back on the conversations that I had with Baby and being so proud that she spoke so well. The memory of a speech evaluator telling me that she had no purposeful speech but was actually echolalic and the devastation that followed knowing that all of my children were on the spectrum.
As I watched the mother on Parenthood express her fear of pushing her son into mainstreaming, I am struck frozen with the decision that is looming in front of us. Are we going to do it at the right time? Can we tackle all of their needs in one school or are we going to have to split them up again? Is Handsome going to go to school with Bugabuga and CEO or will we luck out and get a spot with Baby? If we don't get that spot, will Baby be okay being separated from her siblings? I don't want her to feel alienated from them because she is higher functioning. My motherly instinct tells me to keep them together but then I look at each child and I know that we have to do what's right, not what's comfortable.
Bugabuga is in a new class. The demands are greater and they are rattling her. Her speech is diminished and her markers are harder. It was the same way last year but she was able to pick herself up and excel. CEO has been placed in a higher class. Her beloved Miss Sylvia is in a different building and I know that she misses her. I know that she has a hard time dealing with the change and I know that whereas Bugabuga acts babyish to deal, CEO rages and becomes violent. I know that she cannot help herself and I pray every moment that she will adapt or be knocked back down to a smaller class. Baby gets weepy and sits quietly introverted. It's only been a week that they have been back to school but I am counting the moments until they find their way again.
I sit here with a hoarse voice, looking at Bugabuga asleep on the couch. She fell asleep talking to me and listening to me talk for hours. When I came home from work, she was mostly nonverbal. I can't lose her. So we went back to basics.
"Can you say Mama?"
"eh eh."
"I know you can speak. I don't understand what you are saying. Speak!"
"eh, eh."
"I'll tel you a story. There once was a Mommy and Daddy that had a Bugabuga. What did we have?"
"eh,eh."
"We had a Bugabugabugaubugabugabugabugabugabuga!" I hold her little hand to my lips to feel the vibration. "Come on, baby girl. What does Mommy and Daddy have?"
"eh....eh....Bu....bu....ga"
"That's right! Bugabuga! That's you! Say it again."
"Bugabuga! Bugabugabugabugabugabuga!"
"What's my name?"
"Mama! Silly goose."
"I am a silly goose! Now tell me about your day."
"I singed. I colored and danced! Ohh, it was fun, Mom! It was fun. Miss Carol is my friend. Krystal held my hand. I played on the bike. I jumped up and down and I did a circle!"
"That sounds wonderful! I love to hear your stories. Keep using your words, okay?"
"Come on, Mom. Come on, you silly goose." Her eyes lock onto mine and I know that she's okay.
I watch the mother stand outside the fence watching her child sitting alone and I see the desperation in her eyes. The pain is obvious and I wonder if that's what I look like when I look at my kids playing alone in a crowded room.
My kids don't like loud noises. Overall, I think our home is fairly quiet for a house with four children. It's almost like the lack of speech is a weighty silence that is taking years to get break through. I think of the natural ebb and flow of sound that was part of my home before my children were born. Each room held a radio playing a different station, our love of music and radio in general apparent. A conversation that would mutually pause to listen to a perfect radio break was a common occurrence.
And then Bugabuga didn't start talking...
The speech therapist recommended that we turn off the radios. She felt that it could cause auditory confusion. My husband wanted to turn the radios off instantly but I couldn't bare it and I slowly turned one radio off at a time. The silence was deafening. There was no babbling and giggling. There was nothing except the sound of my voice-constantly. And when my voice was silenced from overuse, the only noise was a small mobile that was the only toy that was quiet enough that it didn't make them cry.
I close my eyes some days and remember the absolute terror that I lived with worrying that my babies would not speak. I relive the hours of the CEO flinging her body against the wall and the feeling of helplessness. I think back on the conversations that I had with Baby and being so proud that she spoke so well. The memory of a speech evaluator telling me that she had no purposeful speech but was actually echolalic and the devastation that followed knowing that all of my children were on the spectrum.
As I watched the mother on Parenthood express her fear of pushing her son into mainstreaming, I am struck frozen with the decision that is looming in front of us. Are we going to do it at the right time? Can we tackle all of their needs in one school or are we going to have to split them up again? Is Handsome going to go to school with Bugabuga and CEO or will we luck out and get a spot with Baby? If we don't get that spot, will Baby be okay being separated from her siblings? I don't want her to feel alienated from them because she is higher functioning. My motherly instinct tells me to keep them together but then I look at each child and I know that we have to do what's right, not what's comfortable.
Bugabuga is in a new class. The demands are greater and they are rattling her. Her speech is diminished and her markers are harder. It was the same way last year but she was able to pick herself up and excel. CEO has been placed in a higher class. Her beloved Miss Sylvia is in a different building and I know that she misses her. I know that she has a hard time dealing with the change and I know that whereas Bugabuga acts babyish to deal, CEO rages and becomes violent. I know that she cannot help herself and I pray every moment that she will adapt or be knocked back down to a smaller class. Baby gets weepy and sits quietly introverted. It's only been a week that they have been back to school but I am counting the moments until they find their way again.
I sit here with a hoarse voice, looking at Bugabuga asleep on the couch. She fell asleep talking to me and listening to me talk for hours. When I came home from work, she was mostly nonverbal. I can't lose her. So we went back to basics.
"Can you say Mama?"
"eh eh."
"I know you can speak. I don't understand what you are saying. Speak!"
"eh, eh."
"I'll tel you a story. There once was a Mommy and Daddy that had a Bugabuga. What did we have?"
"eh,eh."
"We had a Bugabugabugaubugabugabugabugabugabuga!" I hold her little hand to my lips to feel the vibration. "Come on, baby girl. What does Mommy and Daddy have?"
"eh....eh....Bu....bu....ga"
"That's right! Bugabuga! That's you! Say it again."
"Bugabuga! Bugabugabugabugabugabuga!"
"What's my name?"
"Mama! Silly goose."
"I am a silly goose! Now tell me about your day."
"I singed. I colored and danced! Ohh, it was fun, Mom! It was fun. Miss Carol is my friend. Krystal held my hand. I played on the bike. I jumped up and down and I did a circle!"
"That sounds wonderful! I love to hear your stories. Keep using your words, okay?"
"Come on, Mom. Come on, you silly goose." Her eyes lock onto mine and I know that she's okay.
Sunday, September 11, 2011
Mommy's Miracles: Rose-colored glasses
Mommy's Miracles: Rose-colored glasses: I don't usually write about things as they happen. It takes me some time to water it down, remove the deep emotions-analyze the situation, ...
Rose-colored glasses
I don't usually write about things as they happen. It takes me some time to water it down, remove the deep emotions-analyze the situation, find another way to make it work for next time, ignore the rough moments. I need some time to put on my rose colored glasses.
We went to the Central Park Zoo today.
I've been on vacation all week and have taken the family to a variety of places so that we can make memories with each other.
I have broken their routine.
"Okay guys, let's take the train. Who's ready?"
"Choo Choo train?" Handsome asks.
"Me!"
"Me!"
"Come on, Mom. Come on! We go to the zoo and animals and the train. We're going to have a great time. I see animals and fishes. Fishes, ooooohhhh, I'm gonna have fun, Mom." Bugabuga's mono tonal monologue begins.
We being walking down the block and the CEO jerks her hand away from me and takes off running. My heart is my mouth. I reach to grab her. Oh God, please don't run into the street. Please. She's just out of reach; she moves so quickly. She has no limitations physically but Bugabuga is holding my other hand and she cannot run. She won't let go because she's listening to my request to hold hands. I tear my hand away while lifting my leg to steady her and extend my body to grab the CEO. She's still moving and I take off. I grab her hand.
"I don't like you Mommy."
"I know, but I love you anyway. Don't let go of my hand again." Oh please, don't let this be a sign. Please, let me have a good day with them. I need this to be a good day-too many memories are chasing me today. It has to be a good day.
We're on the train and the kids are in high spirits. The CEO and Baby are hugging and laughing. The CEO randomly starts crying. The intensity is startling and people on the train are doing the polite look out of the corner of their eyes.
"You're okay. You're okay. Let's play a game. I spy, with my eyes..."
"I don't like you MOMMY. I want DADDY! DADDY! DADDY!"
"I know, but I love you anyway. Go sit with your father. Switch out." We always have two kids per parent. That parent is responsible for them only. We adjust our seating to work with the new responsibilities. She smiles and cuddles against her dad. The joy in her face is difficult for me to see. She doesn't have a filter and I know that I'm inciting rage in her today. My heart hurts and I want to cry but instead I smile and sing a song with Baby and Bugabuga.
"Mommy, mommy, mommy! I need mommy! MOMMMMMMMMMMMMMYYYYYYYY!" A struggle breaks out on my husband's side of the train. Handsome is refusing to stay in his seat. I make eye contact with my husband, "You okay?"
"I've got it. Sit down, Handsome!"
"Mommy! Mommy! Mommy!"
"You want Mommy, fine! Switch out!"
The ride continues in the same vain for the duration of the ride. I'm tired before we even enter the Zoo. Please let it be a good day.
We step off the train holding hands and the CEO jerks away this time from my husband. Oh, fuck no. We jump instantaneously my hands filled and I grip one hand while holding Bugabuga's hand at the same time while my husband grabs the other hand. We stand huddled together. Our breathing shallow and terrified. We regain our composure and walk away. The CEO is having a rough day today. She'll be better once we get to the zoo.
We walk the three blocks and the kids are laughing and looking forward to the animals. We walk in and they are so excited! They are smiling and dancing. Running from exhibit to exhibit, taking pictures and squealing in delight. Bugabuga almost stepped on a worm and we all squatted down to watch the worm hurry away.
"Sorry worm. Oops! Sorry worm."
Their expressions were filled with curiosity. It was relaxing. We all started laughing and enjoying the day. It will be a good day.
We visited a 4D movie featuring Dora and Diego. Bubbles, snow and water were involved. It was so much fun and they, of course, saved the rain forest.
We sat for lunch. The kids could barely focus enough to eat. We struggled to get them to eat. It's always a struggle. I felt so sad. They were talking to each other but not following our lead. They needed to eat. I looked away and I wiped at my eyes. I cannot cry in public. I will not cry. My eyes locked with a man sitting across the way and I saw the compassion. I swallowed and wiped a lone tear and refocused my efforts. They ate lunch. The day was really shaping up to be stellar.
We feed the animals in the Children's Zoo. Bugabuga was so upset that we could not feed the ducks. "They hungry too!"
We cajoled and distracted. We made it out of the park after only another meltdown from the CEO. We walked around to different stores and left each store as the hyperactivity impeded our progress. The kids were smiling and laughing. It's a good day.
The CEO was showing fatigue. It was time to go. We couldn't find a cab willing to take us home. Finally, a kind cab driver took us in even though the CEO was screaming and crying. She cried for at least 20 minutes of the 40 minute ride. My nerves were frayed. I called my parents.
My family was standing outside ready to grab a kid as I passed them out of the car. They had them calm by the time I finished paying the driver.
My mother feed us dinner and I watched them equalize. My shoulders relaxed and I saw how they happily explained their day. They had a fantastic day.
I could write this in a few weeks with my rose-colored glasses on but I won't because ultimately it was a great day.
We went to the Central Park Zoo today.
I've been on vacation all week and have taken the family to a variety of places so that we can make memories with each other.
I have broken their routine.
"Okay guys, let's take the train. Who's ready?"
"Choo Choo train?" Handsome asks.
"Me!"
"Me!"
"Come on, Mom. Come on! We go to the zoo and animals and the train. We're going to have a great time. I see animals and fishes. Fishes, ooooohhhh, I'm gonna have fun, Mom." Bugabuga's mono tonal monologue begins.
We being walking down the block and the CEO jerks her hand away from me and takes off running. My heart is my mouth. I reach to grab her. Oh God, please don't run into the street. Please. She's just out of reach; she moves so quickly. She has no limitations physically but Bugabuga is holding my other hand and she cannot run. She won't let go because she's listening to my request to hold hands. I tear my hand away while lifting my leg to steady her and extend my body to grab the CEO. She's still moving and I take off. I grab her hand.
"I don't like you Mommy."
"I know, but I love you anyway. Don't let go of my hand again." Oh please, don't let this be a sign. Please, let me have a good day with them. I need this to be a good day-too many memories are chasing me today. It has to be a good day.
We're on the train and the kids are in high spirits. The CEO and Baby are hugging and laughing. The CEO randomly starts crying. The intensity is startling and people on the train are doing the polite look out of the corner of their eyes.
"You're okay. You're okay. Let's play a game. I spy, with my eyes..."
"I don't like you MOMMY. I want DADDY! DADDY! DADDY!"
"I know, but I love you anyway. Go sit with your father. Switch out." We always have two kids per parent. That parent is responsible for them only. We adjust our seating to work with the new responsibilities. She smiles and cuddles against her dad. The joy in her face is difficult for me to see. She doesn't have a filter and I know that I'm inciting rage in her today. My heart hurts and I want to cry but instead I smile and sing a song with Baby and Bugabuga.
"Mommy, mommy, mommy! I need mommy! MOMMMMMMMMMMMMMYYYYYYYY!" A struggle breaks out on my husband's side of the train. Handsome is refusing to stay in his seat. I make eye contact with my husband, "You okay?"
"I've got it. Sit down, Handsome!"
"Mommy! Mommy! Mommy!"
"You want Mommy, fine! Switch out!"
The ride continues in the same vain for the duration of the ride. I'm tired before we even enter the Zoo. Please let it be a good day.
We step off the train holding hands and the CEO jerks away this time from my husband. Oh, fuck no. We jump instantaneously my hands filled and I grip one hand while holding Bugabuga's hand at the same time while my husband grabs the other hand. We stand huddled together. Our breathing shallow and terrified. We regain our composure and walk away. The CEO is having a rough day today. She'll be better once we get to the zoo.
We walk the three blocks and the kids are laughing and looking forward to the animals. We walk in and they are so excited! They are smiling and dancing. Running from exhibit to exhibit, taking pictures and squealing in delight. Bugabuga almost stepped on a worm and we all squatted down to watch the worm hurry away.
"Sorry worm. Oops! Sorry worm."
Their expressions were filled with curiosity. It was relaxing. We all started laughing and enjoying the day. It will be a good day.
We visited a 4D movie featuring Dora and Diego. Bubbles, snow and water were involved. It was so much fun and they, of course, saved the rain forest.
We sat for lunch. The kids could barely focus enough to eat. We struggled to get them to eat. It's always a struggle. I felt so sad. They were talking to each other but not following our lead. They needed to eat. I looked away and I wiped at my eyes. I cannot cry in public. I will not cry. My eyes locked with a man sitting across the way and I saw the compassion. I swallowed and wiped a lone tear and refocused my efforts. They ate lunch. The day was really shaping up to be stellar.
We feed the animals in the Children's Zoo. Bugabuga was so upset that we could not feed the ducks. "They hungry too!"
We cajoled and distracted. We made it out of the park after only another meltdown from the CEO. We walked around to different stores and left each store as the hyperactivity impeded our progress. The kids were smiling and laughing. It's a good day.
The CEO was showing fatigue. It was time to go. We couldn't find a cab willing to take us home. Finally, a kind cab driver took us in even though the CEO was screaming and crying. She cried for at least 20 minutes of the 40 minute ride. My nerves were frayed. I called my parents.
My family was standing outside ready to grab a kid as I passed them out of the car. They had them calm by the time I finished paying the driver.
My mother feed us dinner and I watched them equalize. My shoulders relaxed and I saw how they happily explained their day. They had a fantastic day.
I could write this in a few weeks with my rose-colored glasses on but I won't because ultimately it was a great day.
Sunday, August 21, 2011
Mommy's Miracles: Don't do that crying thing.
Mommy's Miracles: Don't do that crying thing.: It's actually pretty comical to see me deal with someone crying. I don't like it, I feel helpless. I don't have words to make it better. ...
Don't do that crying thing.
It's actually pretty comical to see me deal with someone crying. I don't like it, I feel helpless. I don't have words to make it better. Instead, I have one liners.
It's terrible. I have the face of someone that wants to hear every one's problems. I meet random strangers and I get their life story. And here's the thing, it's like people can tell that I will not stop them, that I will listen and take their pain with them. But honestly, please shut up!
I hear all these different stories about life gone wrong and never fail, I have at least one person a week tear up when talking to me. I feel like there is a neon sign above my head, "Talk here. You'll feel better, she'll feel worse but never mind that."
It's always been this way and I have a feeling that it will always be this way.
I deal with it and make jokes to avoid getting swallowed in all the pain that everyone deals with. And then I started to think about it, why does every one's life seem to suck?
That's the thing, it doesn't suck. It's about the perspective of your life. I think that's why I'm so content in my life without the help of happy pills. I hear people say, "It can't get much worse." and I want to spill coffee on them. It would be worse. LOL.
Maybe it's that I have walked through a road with so many possible potholes that I've realized that rough road is not a bad thing really because you're still on a road. And if even you fall off of the path that you expected to travel, you can just be taking the scenic route of life.
I'm always positive, not because I'm unrealistic but because I'm optimistic. I'm a daredevil waiting for the next loop in the roller coaster-because if you are afraid of the loops, you'll miss out on all the views.
Maybe that's why I listen to every stranger and friend because I know that I can always find the positive and make things seem a little more bearable.
When all else fails, I say, "I understand. I have four children with Autism." Most people will become quiet, they cannot imagine how difficult it is-how much it must suck. It gives them a different perspective when looking at their life.
They are wrong-of course. My kids are wonderful and amazing and our days are filled with laughter. I may be seen as a strong woman DEALING with this life but I'm not, I'm just a wife and a mother living-it's what makes my life so grand.
It's terrible. I have the face of someone that wants to hear every one's problems. I meet random strangers and I get their life story. And here's the thing, it's like people can tell that I will not stop them, that I will listen and take their pain with them. But honestly, please shut up!
I hear all these different stories about life gone wrong and never fail, I have at least one person a week tear up when talking to me. I feel like there is a neon sign above my head, "Talk here. You'll feel better, she'll feel worse but never mind that."
It's always been this way and I have a feeling that it will always be this way.
I deal with it and make jokes to avoid getting swallowed in all the pain that everyone deals with. And then I started to think about it, why does every one's life seem to suck?
That's the thing, it doesn't suck. It's about the perspective of your life. I think that's why I'm so content in my life without the help of happy pills. I hear people say, "It can't get much worse." and I want to spill coffee on them. It would be worse. LOL.
Maybe it's that I have walked through a road with so many possible potholes that I've realized that rough road is not a bad thing really because you're still on a road. And if even you fall off of the path that you expected to travel, you can just be taking the scenic route of life.
I'm always positive, not because I'm unrealistic but because I'm optimistic. I'm a daredevil waiting for the next loop in the roller coaster-because if you are afraid of the loops, you'll miss out on all the views.
Maybe that's why I listen to every stranger and friend because I know that I can always find the positive and make things seem a little more bearable.
When all else fails, I say, "I understand. I have four children with Autism." Most people will become quiet, they cannot imagine how difficult it is-how much it must suck. It gives them a different perspective when looking at their life.
They are wrong-of course. My kids are wonderful and amazing and our days are filled with laughter. I may be seen as a strong woman DEALING with this life but I'm not, I'm just a wife and a mother living-it's what makes my life so grand.
Sunday, August 14, 2011
Great Expectations
I'm a sap. A complete and utter sap.
I wanted children for a long time-wait, let me clarify, I didn't just want children-I wanted to have my husband's children. I had dreams of frills and trucks and all the good times in between. I had expectations...
***************
"We're having a party!"
"Are you a party girl?" I asked Bugabuga.
"Oh yes, Mom. I'm a party ANIMAL!"
"You go girl! Par-TAY!"
"Dad, I'm a party girl too!" Baby chimes in, my husband looks shaken. It's begun.
"Me too! I'm a party princess!" The CEO jumps in.
"Par-TAY! Par-TAY!" Handsome is jumping around dancing.
My husband and I stand shoulder to shoulder (alright, shoulder to abdomen but you get the idea) watching the kids throw a party and do pretend play. When one falters, another picks it up. They are laughing, dancing and just having a great time. I see my little guy fitting in and hamming it up. This is what I wanted. This is what I dreamed of all those years ago.
And now as they sleep, I close my eyes and see their little smiles and hear their giggles. I tear up.
They are everything beyond my wildest dreams.
I wanted children for a long time-wait, let me clarify, I didn't just want children-I wanted to have my husband's children. I had dreams of frills and trucks and all the good times in between. I had expectations...
***************
"We're having a party!"
"Are you a party girl?" I asked Bugabuga.
"Oh yes, Mom. I'm a party ANIMAL!"
"You go girl! Par-TAY!"
"Dad, I'm a party girl too!" Baby chimes in, my husband looks shaken. It's begun.
"Me too! I'm a party princess!" The CEO jumps in.
"Par-TAY! Par-TAY!" Handsome is jumping around dancing.
My husband and I stand shoulder to shoulder (alright, shoulder to abdomen but you get the idea) watching the kids throw a party and do pretend play. When one falters, another picks it up. They are laughing, dancing and just having a great time. I see my little guy fitting in and hamming it up. This is what I wanted. This is what I dreamed of all those years ago.
And now as they sleep, I close my eyes and see their little smiles and hear their giggles. I tear up.
They are everything beyond my wildest dreams.
Saturday, August 13, 2011
Mommy's Miracles: An encounter on the train
Mommy's Miracles: An encounter on the train: "'You're so inspiring to me. I know what you have to deal with and I see you come in smiling every morning with a positive attitude. That's ..."
An encounter on the train
"You're so inspiring to me. I know what you have to deal with and I see you come in smiling every morning with a positive attitude. That's what gets me up in the morning, if you can do it, so can I."
I'm humbled. I don't think I'm anything special. I'm blessed with my life-with my family. I see people dealing with some serious issues every day-illness, depression, unemployment. I may not know these people but you can see the signs of struggle in some one's resting expression.
I will never forget seeing a woman on the train that had huge circles under her eyes, she was falling asleep on her feet. She was startled awake when she started to lose her grip on the railing and I saw a glimpse of agony in those eyes. Not agony of physical pain, but agony of the mind and heart. An older woman reached out and said, "Whatever it is, it will resolve itself. Trust in God."
In true NY fashion, the woman jerked away and turned her back. Her mask was firmly back in place but regardless, the other woman and I saw it. I said a little pray for her and I think of her often. I wonder if she is happier now and I wonder if anyone on the train ever sees that bleakness in my eyes, catches me in the moment when I doze on the train and have to fully wake up. It takes me a minute before I feel my mask slip back on and I constantly wonder what I look like before it settles in because I have noticed several people do double-takes when they make eye contact in that moment.
My positive attitude is part of my mask, I need it just as much as I need people to believe it. It is a rare day that I cannot ignore the difficulties that I deal with daily.
"Mommy, NOOOOOO! I do it myself!!!!!! NOOOOOOOOOO!!!!!!!!! AAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!
NNNNNNNNNNNNOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!
Please, please, please. I do it myself!"
It's the begging that shatters me. I watch the transitions rock Bugabuga's world and I try to help her through it but there are days that I'm not enough, my husband's not enough-even Angry Birds can't bring her out of it.
"PLEASE, MOMMY! DADDY, PLEASE! AHAHAHAH! Please, please. I do it myself."
It's not that we don't want her to be independent, we do but some days, we have no idea what she is talking about. We have no idea what set her off so we don't know how to make it better.
It's those days that I cry in the shower and walk in to work with my head down. I know the strangers on the train feel the anguish in me and I wonder if some realize that I am trying to block out the memory of screams by blaring my IPOD at the highest volume. It's not that I want to be inconsiderate-I even bought headphones that angle the sounds into my ear rather than have the sound bleed out-but I cannot deal with that absolute heart-breaking screams that randomly pop into my mind.
"Don't touch me!" I'm jarred out of my deep thoughts and fears about Bugabuga by a random woman looking at me with hatred. In all of the years of travelling on the NYC subway system, I have never had an issue with another passenger.
"What?"
"Touch me again and I'll hit you."
"What are talking about? The train is crowded, I'm not trying to touch you."
The train jerks forward and the woman's flowing garb touches my bag. The sounds of Bugabuga's screams are still in my mind and I'm so angry that I couldn't figure out where we went wrong. There had to be a reason, but what if there wasn't one, what if she's regressing?
I'm shoved against another person, I turn to apologize to the random stranger and then turn back around to the woman that hates me and it's my turn to release my venom.
"What the FUCK is wrong with you? Touch me again, and I'll take you down."
"You are the devil."
I look in disbelief as she raises her hand to strike me across the face and I decide in that instant to let her see my soul. I look into her eyes with every raging emotion that I have that I need to put into a box before I step out of my bed. I know that there is a frighteningly blank look in my eyes sometimes and I feel it. I see the absolute terror in her eyes as I grab her hand and twist it so hard that she doubled over in pain.
I let go and she moves quickly away from me.
Every day I use the gentlest voice, the softest touch, the most cajoling words I can to have a harmonious house- to avoid the rough transitions that can quickly overwhelm the joy that we have at just existing. There are days that I will get punched in the face, kicked in the ankles, scratched and I just give a hug in return. I pray in every breath for strength and I'm so calm because I'm constantly talking to God.
But on the train, with a stranger, I will not be pushed. I'm not an inspiration. I'm just another person dealing with life. Most days are good and some days I'm the devil.
Sunday, August 7, 2011
Mommy's Miracles: Explaining Autism to a sibling.
Mommy's Miracles: Explaining Autism to a sibling.: "'Mommy, I don't like when she screams.' I feel myself flinch. I don't want to have this conversation. They are 3 1/2 years old. They are..."
Explaining Autism to a sibling.
"Mommy, I don't like when she screams."
I feel myself flinch. I don't want to have this conversation. They are 3 1/2 years old. They are too young to realize the differences.
"Mommy, uuuuggggghhhhhh! Why does she do 'GRRRRRR'?"
My heart twists as I hear Baby's speech impediment. She doesn't realize that speaking in a whisper is inappropriate but she realizes that the CEO's grunting is not quite right.
I don't know what to say so I ignore it. "That's just her Baby, that's just who she is."
Two weeks later...
"Mommy, I don't like CEO. She's weird."
My cheeks and ears flush. This can't happen. I know the world may not be kind of some of the markers but our home is a safe haven.
"Sweetie, everyone is different. Some people cry a lot like Bugabuga. Some people scream. Some people don't speak and some people sing all the time. We love everyone because we're all God's babies and God doesn't make mistakes, okay?"
"Okay, Mom."
Three weeks later...
"AAAAAAAAAHHHHHHHHHH!" I hear Handsome cry in the next room.
"MOMMY! CEO is hurting Handsome! I'm scared of CEO."
I break-up a squabble over plastic horses.
"I mad!" CEO yells. I am so proud of her! She's expressing emotions. This is such a huge milestone. We've been working on this for years already. I control my expression but I want to dance with joy.
I turn to Baby. "Listen!" No eye contact, I make her look at me. "Listen, look at me! CEO has a hard time sometimes. Sometimes things are too loud or there are too many colors. Sometimes, she wants to be alone. You like to get quiet sometimes, right? Well, she likes to scream. It makes her feel better. No matter what, we can be mad, sad, angry or happy-we ALWAYS, ALWAYS love our family."
"Baby, CEO has Autism. So do you, Bugabuga and Handsome. Your brother and sisters are your best friends, always. We are always a team, no matter what, we love each other no matter what. If you think we're weird, we can be and that's okay. Everyone can be weird. Weird makes things fun, okay. Mommy and Daddy love everyone NO MATTER WHAT. Tell me what you think."
"Mommy and Daddy love me no matter what. I love my sisters and brother no matter what. We do weird sometimes and that's fun no matter what."
"That sounds about right, Baby Girl. No matter what."
Saturday, July 30, 2011
Mommy's Miracles: I'm happy.
Mommy's Miracles: I'm happy.: "The reality of my life is a bit hard to digest. It has the makings of a Lifetime movie including cheesy soundtrack. I think most people th..."
I'm happy.
The reality of my life is a bit hard to digest. It has the makings of a Lifetime movie including cheesy soundtrack. I think most people think I spend my days sad and determined.
I am determined...to be happy. Everyone has a load of crap that they carry and that makes their life more difficult, I'm no different.
I just chose to be happy.
There were many days that I did/do cry and I still don't sleep through a night but overall I am a lucky girl.
We went to the girls' dance class earlier today. Baby was not feeling it. She was crying and shutting down left and right.
I jumped into the class to help focus her and it wasn't working. I was getting a great workout jumping around like a frog but I couldn't reach her. I felt so frustrated but I kept going and then suddenly I felt a strong presence next to me. I looked over my shoulder and my husband was jumping like a frog too!
He towered over all the little ballerinas in making by at least 4 feet. He waved the ribbons that the teacher handed out with the enthusiasm of the most perfect student. When he jumped gracefully in the air, with the ribbons trailing behind him I lost it. I started laughing so hard that Bugabuga started laughing. Not to be left out, Handsome and the CEO cracked up without any clue as to why they were laughing. The Baby was jarred from her little world and started smiling. She got up from the floor and started twirling with her daddy.
There are numerous occasions that I look at my husband in wonder and I'm just humbled that he picked me.
How can I not be happy?
(And yes, I took pictures. LOL)
Thursday, July 28, 2011
It's reasonable to wonder...
Today was a busy day. I was up early to see my endocrinologist about my thyroid issues. It's always fun to have a sonogram of the neck. I passed the time texting my husband.
Time was stuck on fast forward. I dreaded this day, I put it off as long as I could and then, when I didn't have the balls to take the next step, I gave the contact information to my husband. He made the appointments.
Today we went to see the geneticist.
I was cranky, angry, rude, obnoxious and terrified. We have four Autistic children. It's reasonable to wonder why that happened. Who's responsible? Is it genetic? It has to be...
It's the who's responsible question that turned my blood to ice. What if it's me? What if it's him? Either way, I didn't want to know. I knew that I would be angry if somehow my husband was responsible for a genetic mutation. I mean, really, shouldn't one know if they are a mutating?
The scariest possibility is that it's me. I took it so hard that I was not able to successfully carry a pregnancy without lots of medical help. I didn't want the knowledge that my body failed my children.
Today was a comedy of errors and delays. We ran to each of the girl's schools to pick them up. Each of them are now in different programs based on their level of functioning. We're not taking the easy road on their education. It would be so much easier if they are in one place.
Each school meandered and dithered. Even one of Brandon's therapist got into the mist and delayed us by running to get photocopies of his charts. Really, today? So whereas I expected to be early or at least on time. I was only able to hit two schools by appointment time. I dropped my husband off with Baby, Bugabuga and Handsome and jumped back in the car to get the CEO.
The CEO was strapped in her seat and I was about to pull away when the school secretary ran out. "You have a phone call!"
"Huh?"
"I'll stay with her. Pick up the blinking line on phone."
I hurried in and thought to myself, this cannot be good. I look down at the phone and gained a new level of respect for the woman. There are no less than 40 lines and three are blinking. Another office worker tries to help and we lose the call three times. Really?! Come on!
I hate being late.
I finally connect with my husband.
"We're at the wrong office. It's the other one 2 miles away."
"Take a cab! I'll met you there."
"My wallet is in the diaper bag in the car. I spoke with his assistant. We need to be there by 3:00 in order to be seen."
"FUCK!!!!!!! I'm coming."
I raced out. Gave a thankful, stressed smile to the secretary and booked it. We were now 45 minutes late and I'm thanking the Lord in every breathe that I don't have high blood pressure, as it is, I have a splitting headache and I'm about to go to my most hated office. The place is filled with germs and never fail at least one of the kids walks out sick. Damn it!
I get to the wrong office and toss money at my husband, who is standing at the curb, anxiously on the look out. We switch babies because I know a cab will get there faster than I will, because I will need to find a spot. I hate parking in Brooklyn. And if you wonder why I don't just throw the kids in the car-it's because I have a 5 seater car and a 6 seater family. We don't all fit. Ain't that a bitch?
We rush to get to the appointment and I find an awesome spot two blocks away from the office. I run in and in a mad dash, I grab a file and frantically start filling out paperwork.
"Which baby are you doing?"
"A"
"Okay, I've got B." and so on etc, until all the forms were completed. We knocked them out in about 10 minutes. I'd like to say that it's because we are speed demons but really, we know these forms like the back of our hands.
"We only have one referral."
"The hell you do. I confirmed yesterday that all three were here. Check with Nelly."
Fifteen minutes later, "We found the referral. Billing would like to speak with you."
Billing? It does not bode well when billing wants to talk to you before an appointment. I walk over leaving my husband to stop the battles for cookies.
An administrator proceeds to tell me that because the kids are covered by two insurances, she has to bill one over the other and that is not the one we put on the paperwork. I'm looking at her like she has 10 heads. We're delaying the appointment because I have too much coverage for them. Lovely.
I'm being my nicest-okay well, I'm not spitting or cursing; that should count for something.
"I appreciate your position. But here's my position, it took four months to get this appointment. We are seeing the doctor. I don't have much more to suggest to you other than get it done. Are we clear? Fantastic! Thank you!"
I walked out and hoped to God that we would actually be called.
I sit in the waiting area and watch a little girl steal a cookie from the CEO. She smirked, gave her a little push and turned her back to her. I'm explaining to the child that we don't steal and looking for a mother to make sure the kid can have the cookie. No mother in sight and the girl had a real entitled attitude. Hmm. I wasn't impressed.
I walked away and left the CEO to her own devices like the other mother had done with her daughter. In the seconds that I turned, it seems the cookie was on the floor and the little girl was crying. The CEO is not one to mess with, and if the kid wasn't a little thief without parental supervision, I may have had an opportunity to say to the mom, "Be Careful. My daughter tends to rage because of her ASD." Not paying attention or really giving a shit, bully for you.
I counted to 10. I need to relax. I hear our name called. My cavalier attitude actually worked!
The kids walk in a line and get weighed. We do all the regular triage stuff and then start walking down the hallway to the room.
I admit, my children are a sight. They are pretty much the same height and the same age. People cannot help but stop and stare.
I see a line of doctors watching us walk. My skin is crawling. They all look so excited to see us and I begin to feel like a specimen rather than a patient. They are looking at us the way I look when I see a huge non-returnable sale or my husband when he hears a perfect radio break. The doctors are having a work-gasm. There are four autistics with the same genetics walking into their office and they get to study their DNA. OMG! They can barely contain their excitement. If I could draw a picture, it would be about 12 doctors surrounding me with fangs like wolves, saliva dripping from their mouths. As you can tell, I was in a very POSITIVE mood.
The kids were being rambunctious. Every doctor looked at them lovingly, dissecting every little move they made.
The appointment lasted about three hours.
We tried our best to keep them occupied but I doubt that patient bed will ever really ever lose the orange crayon. We're in the mist of potty training so that really took the excitement level up another notch. We plied them with juice to keep them occupied- in hindsight-not our most brilliant plan.
Finally, the head geneticist comes in. My hands are shaking at this point. I don't want to know what he thinks; I want to get out of here.
He begins speaking.
"We're going to run a battery of tests. I think there may be eye issues. I want everyone to see the following specialists: cardio, ga-"
SWOOOSH!
The CEO, being held in my husband's arms, lost control of her bladder. The urine splashed all over the floor, my husband, me, the doctor.
We barely skipped a beat. Consoling her for the accident and stripping her clothes off and throwing on the extra set in less than a minute. We continued to talk to the doctor and listen to everything he said. He focused on me, "Let me see your ears. I'm going to examine you."
WTF?
Why am I getting examined? He checked my ears, neck, eyes and back. My hands are shaking again and I'm sweating. "What are you looking at?" giggling nervously.
"Here is my theory. I believe there is a genetic mutation. Your sons tests have come back normal. This may not explain the Autism but it may explain your health and them. We will check Bugabuga. More than likely you have the same mutation as they have but it is not very severe for you. If you have it, which I believe you do, there is a 50-50% chance that your children have it. We'll do your blood tests after Bugabuga's test are complete."
And there it was.
It's me.
Saturday, July 23, 2011
Have a little faith.
When life throws an unexpected curve, it's hard to shake it off and move forward. I would be dishonest if I said that I was shitting rainbows at the thought of having special needs children, more likely, I was shitting bricks.
I had helpful friends and family suggest seeing a psychiatrist. "You'll need an anti-depressant at least and maybe some anti-anxiety drugs too. Hell, I would."
There may have been some truth to that. I probably could have used an anti-depressant, because the truth was, I was depressed. But I'm a tough little bitch that will wait to see a doctor until a limb is hanging off at a funny angle. I'll fight tooth and nail not to see a doctor and the only appointments I go to are made by my husband.
I needed to find my way. Daily I woke up sad and overwhelmed with the kids needs. I needed to take care of the fact that I was constantly dizzy from high blood pressure. 'Try meditating."
My constant replays were, "When? How?"
I dealt with the stress in the only way that I knew how. I ate all day. Any time something bothered me, I ate toast, anything. I stuffed down my emotions. It wasn't a good way to live.
I needed help and normally, usually I would pray for peace. But at this point in my life, I was rip-roaring angry. For the first and only time in my life, I faltered in my faith.
"If there was a God, this wouldn't be happening. I pray every fucking morning and every fucking night. For what? To give thanks for a life of no peace? I'll never die peacefully knowing that they need help. There is no God. Fuck going to Church. Fuck it all. I'm done. He has forsaken me first."
Just saying the words made my heart beat fast. My body revolted against what my mind was saying.
When a traumatic event takes place, everyone needs an outlet. I was no exception.
I believe that to grow as a person you have to face true darkness in order to appreciate the beauty that is surrounding you.
I needed a break, my husband could see it and suggested that I go grocery shopping to calm down.
That's when it happened. I found God in the meat section of Pathmark.
I was looking at reduced chicken-it was the only type we could afford. I was so angry that I couldn't afford to buy the chicken breast that is my favorite. I picked up package after package to make sure that the meat wasn't off. I settled on one that was $2.94.
I walked past the fresh vegetables-another favorite and walked down the canned food aisle. Beans go farther than other proteins. I can't stand beans.
I angrily loaded the cart with the sale canned vegetables. My next stop was the baby aisle. Time to pick up diapers and formula. One can of Neutramigen cost $34. I reached for the diapers and saw that the price had gone up. They were $22 instead of $19. I couldn't afford it.
I looked in my cart and the reduced chicken was mocking me. I turned the cart around. Ready to cry, I added the diapers and walked over to the meat section.
I put the chicken back and straightened my shoulders. "It's just chicken." I thought to myself. We needed $160 for doctor visit co pays that week and $294 for my husband's train ticket so he could work. We weren't going to have nearly enough. "It's just chicken."
I slowly turned away. So angry with the world and proceeded to slam my cart into a woman standing behind me. It was 12:3o in the morning. Why was someone so close? I started to say something really nasty and looked at the fool that was invading my personal space. I made eye contact with a nun.
A nun-at 12:30 in the morning-in Pathmark.
"Why are you so angry? I can see it on your face."
I snorted. "If you only knew, Sister."
"Tell me."
"What?" I'm losing it, there is no way that a nun is in Pathmark at 12:30 am. Don't they have a curfew?
"My child, you've become jaded and hardened. What is wrong? Unload your burden and you'll feel better."
"Sister, my life sucks. I can't afford a piece of fucking chicken because I have to go to four fucking doctor appointments with my four Autistic children and what sucks more is that I could have fit in two more doctor appointments but I can't afford to bring them. I worked my ass off to have a good career and I walked away from it to help these children that don't speak, rock continuously and slap the shit out of themselves. I've lost myself. I'm so fucking angry and where the fuck is my God? Like an asshole I went to Mass every week, for what?"
I stood in front of the chicken and looked at her expectantly. I was daring her to tell me that it will be okay.
"I have no answers for you. You've been given a heavier load than most. I'll keep you in my prayers. God makes no mistakes. He's in every breath and every thought, every smile and every tear. Have a good night. Peace be with you."
I was spent and more than a bit embarrassed. There was a stock man looking at me strangely-more than likely because I cursed while speaking to a nun.
I walked to the checkout defeated. I paid for the groceries and had 12 cents left over. I loaded the car and went home.
The house was quiet when I arrived. I unloaded and started organizing the kitchen. The kids would get so upset if the cans didn't line up perfectly. The last bag was especially heavy. I looked down and in my hand was a fresh chicken breast.
I closed my eyes. "God, forgive me. I'll never doubt you again."
Never Stop Dancing
I'm continuing our quest of having a normal childhood. We're at dance class.
"Jump like a frog." Good.
"Run like a pony." I heard a cry. I know it's one of mine.
"I fell down!" Bugabuga exclaimed.
"it's okay girl. You're okay." Baby patted her back.
"Awwww. You okay?" the CEO asked.
"I fell down!"
Miss Ana quietly looked at the dynamic between the girls as I silently watched her to see her reaction.
I'm hoping that she doesn't coddle her. There is a fine line between supporting and coddling. Please don't coddle.
"Everyone falls. I fall sometimes. You have to get right back up and keep dancing. No matter how hard you fall, it's part of your dance. Never stop dancing!"
Perfect!
"Jump like a frog." Good.
"Run like a pony." I heard a cry. I know it's one of mine.
"I fell down!" Bugabuga exclaimed.
"it's okay girl. You're okay." Baby patted her back.
"Awwww. You okay?" the CEO asked.
"I fell down!"
Miss Ana quietly looked at the dynamic between the girls as I silently watched her to see her reaction.
I'm hoping that she doesn't coddle her. There is a fine line between supporting and coddling. Please don't coddle.
"Everyone falls. I fall sometimes. You have to get right back up and keep dancing. No matter how hard you fall, it's part of your dance. Never stop dancing!"
Perfect!
Friday, July 22, 2011
What would I tell parents that are facing a possible diagnosis
People ask me what they should say to their family members about a diagnosis. They ask me what to say to get them to get the children tested if the parents don't see any issues.
I don't know exactly what to say but I know what NOT to say.
DON'T Say:
*Something is wrong with the child.
*The child is delayed.
*The child will speak if they speak more to them.
*It's a cry for attention.
Instead say:
*The child is very quirky and then point out a hard marker like rocking.
*The alphabet seems to be a bit hard for the kid, maybe he/she needs to take it a little slower.
*The child is quiet.
*You're doing your best.
*Does the doctor have any strategies to deal with that behavior? They are professionals. They have experience with all types of personalities.
DON'T SAY AUTISM!
This is definitely a case of killing the messenger. The best thing to do is support the parent. Babysit. Don't criticize. Trust me, they are baffled as to why things seems so hard. Their child is perfect in their eyes. And ultimately, a parent needs to make peace with the fact that no matter how hard they try, no matter all the things they pay extra attention to to make sure that their child doesn't cause a disruption and be an active part of the family, they will need a professional to help them understand their child.
That's the hardest part. I remember listening to the first therapist telling me that Bugabuga was functioning at a 0-3 month level in speech and she was almost 14 months old. I couldn't understand her words.
I remember walking into the neurologist's office and hearing her say, "Yes, I agree. Hypotonia. Developmentally immature." I remember nodding and being too ashamed of my lack of knowledge of the terminology to ask questions. I remember the shock of being given a follow-up appointment. Why did she need to come back when she was fine?
"I guess that's a standard practice." Denial is beautiful in its intensity.
I remember coming back for a 4th visit and her mentioning the phrase spectrum disorder. She didn't say that she had it but she just mentioned that it may be a possibility.
I remember thinking that she was way too pretty to be on the ball. LOL. Anger is vicious, although she is pretty. LOL.
I remember the CEO waking up one morning silent after speaking simple sentences without a problem. I remember the paralyzing fear that she had a seizure.
I'll never forget the pediatrician's expression when I ran into his office without an appointment, crying that something was very wrong. I wasn't ushered back to the waiting room with the triple stroller. I was escorted into a room and the doctor followed right behind.
He checked her thoroughly and made the medical assistant get a neurological appointment for the same day.
I don't remember the hours between that meeting and walking out of the neurologist's office. I remember she was wearing a green shirt, black skirt and black boots. She ordered a battery of tests and referred me to a behavioral neurologist, or as I like to call her, a special specialist.
She called me Mrs. Moronta that day. All the other meetings, she was friendly and caring. On this day, I saw the doctor stone face that medical professionals get when they aren't ready to tell you something but they know or have an inkling of something.
She said AUTISM is a distinct possibility.
I remember nodding and holding a stack of referrals. I remember looking down at the CEO and watching her rock her little body back and forth so hard that the carriage was about to tip over.
I was in shock. She was perfect.
I remember 6 months later bringing Baby in to see the neurologist to show the therapists in the house that she was okay. I remember walking out with paperwork saying PDD-NOS.
I remember the doctor taking my hand and asking if I was okay. I remember looking at her and saying, "No, but I will be."
I remember coming to see her with my son. I saw him rocking and I was so frightened that I could barely breathe.
I remember playing it so cool but she knew. "I am so sorry. Let's discuss the types of therapy that will be the best for him at this time."
I remember my hands shaking when taking all the paperwork. There is so much paperwork. That was the only outward sign of my emotion. "What's another one, right?" I said to make a joke.
I remember her giving me a hug. "It'll be okay. You'll see with therapy, he'll do just as well as his sisters."
She was right.
There is nothing more scary than the idea of something you don't know or understand. The most important thing to realize is that a diagnosis is not a reflection of you, your spouse, your family or your child. It is not giving up the dreams for your child. It's learning how to make all your dreams come true in a way that is meaningful to your child.
I thought for a time that my dreams for my children were dead and broken but they are not. Many people describe autistics as living inside a box, everything needs to be orderly and symmetrical. When I felt that my dreams had been shattered, it was because I was afraid to think outside of the box myself. Once I was willing to think of ways to accomplish our goals, I realized that they are going to do everything they hope to do because my husband and I, along with their team of talented doctors were going to help us find a way to make them happen.
Their potential is limitless, just like always.
Monday, July 18, 2011
It's all about Communicating.
1986
"Um, what if I meet someone who can't talk and hear me and they're lost? What if they need help? Everyone needs someone to help them. I can do it. I can help them." - The eight year old me.
1992
"Why do you want to work with Senior Citizens?"
"They are so interesting. I learn so much. Besides, they need friends. I can be their friends." -The 14 year old me.
1998
"I think you would be exceptional working with special children. Try it."
"I can't do it. I can't handle it. They need so much. What if I'm not as good as they deserve?"-The 20 year old me discussing student-teaching in an Autistic classroom.
2004
"Why do you work with the most difficult, untrained animals? What if you get injured?"
"Everyone deserves to be loved and feel kindness. Everyone, cats and dogs, can show love and kindness once you find the way to communicate on their level."
2008
"You need to start using Sign language to communicate with her. You have to use another means of communication if she doesn't develop the ability to speak."
"She WILL speak. I'll try sign but I know she will speak."
2009
"Mow. Mow." Accompanied by the sign for "More." Bugabuga's first sign! My baby was communicating with me! I smiled and cheered. I hugged her and danced around the room. She was so proud of herself. She signed over and over, faster and faster, "More." I cried and my smile was frozen on my face. "Great job, Bugabuga! Great job! I love you!"
She tottered over to her little pocketbook laying on the floor, focused on her favorite toy. Her focus, razor sharp on the latch, I am forgotten again.
We communicated. That's what matters. We communicated.
I wanted her to speak. I was so proud but I wanted her to speak.
2010
"Ma... Maaaa.... Ma!" "Mama!"
I started crying, so hard that my voice was broken. I signed, "More!"
Thursday, July 14, 2011
"Mommy, you short."
My husband is tall. My children are tall.
I'm short and I have a complex.
I organize my life around my height. Pots in the lower cabinets, spices on the counter. The cabinets on the walls are for storage because I have to pull out a step ladder to reach them. It's interesting seeing the world through a 5' 0" frame when the world is made for people a minimum of 5'4".
I always figured that my kids would outgrow me at some point, probably before they were teenagers but as the years started passing, I realized that they may be in 1st or 2nd grade!
And that, in case you don't realize it, is not cool.
Baby: "Mommy, you short."
"I know honey. I was born that way."
Bugabuga: "Don't be sad, Mom. You'll get big too."
"I'm not sad. I'm happy, but short."
CEO: "Awww. It's okay, do you need a hug?"
"Sure. Big hugs!"
Handsome: "Mommy, you short? Uh oh. Oh no!"
I actually always enjoyed being short. People are always nice when they reach for things for you. I can slip into the train quickly because most people are looking over my head. I have a huge personality, just packaged in a short frame.
Baby: "Don't worry mom, Daddy do it. He's tall, you're short."
Bugabuga: "Mom, why you short?
CEO: "Awww. Do you need a hug?"
Handsome: "Daddy, tall! I tall! Mommy short."
Every day, I hear how short I am. And as I look at the CEO, who is only 18" shorter than me, I think, I need to start wearing high heels!
The kids are so helpful, reaching for things that I can't reach. I hate to break it to them that they are still smaller than me. They are so considerate of my special needs that arise with being a short person. And then I say, like they say to me, when I get too helpful,
"I do it myself!"
Sunday, July 10, 2011
How did this happen?
"How did this happen?"
That question runs through my mind at least once a day. There are several schools of thought. The vaccine group is the loudest and most controversial. I don't believe it for a minute. I think the timing of symptoms and the shots are very close and everyone needs to blame something. Why not blame the shots?
I believe this happened because I used fertility drugs. I remember with frightening detail signing a waiver about autism. I remember questioning it and the doctor saying, "Is there anyone in your family with Autism?" I said no because no one shared that information with me. If I had known, I may not have taken that drug. I probably would have because I wanted a family so badly but I would have made a more educated decision. I can still feel the pen in my hand as I signed my name confidently. Autism will never happen to me.
I know many, many women that have used fertility to get their dream baby. I've read the studies that show that fertility babies are at higher risk for premature labor and developmental delays. I didn't care.
I wanted a baby. And with fertility, you can get a baby but not necessarily a healthy one. Too many parents are becoming versed in OT, PT and Speech Therapy jargon. I feel for the parents that are so excited to hold their little blessing and then find out that they may not have all working parts. It's not supposed to be this way.
I think that Autism is one of the best disabilities to get. Sure, my kids think differently but overall they are healthy as horses. But I see children with organs failing or not working correctly. Diseases that may shorten their little lives and I feel worry and anger toward the specialists that don't explain that the parent path may be rougher and shorter.
But in the quiet urgency of desperation to have a family, even being handed a crystal ball and seeing the potholes in the road, I would have still chosen my children, diagnosis and all. Because nothing in life beats waking up to a loving family, filled with hugs, smiles and laughter.
Saturday, July 9, 2011
Aunt Jane
I always wonder what my Aunt Jane would say about what I've become; how my life has turned out.
Growing up I thought Aunt Jane was every one's aunt, but in reality she was my grandmother's aunt. She never had children herself. She was married to a kind man named Uncle Pete. I grew up spending a lot of time them. We had a grand old time shopping. I remember being about 8 years old and Aunt Jane giving me a shirt that had "Silly" on the back. I was so concerned that the printer made a mistake! It should have said, Cilla. I remember asking her if we should go back to the store because I'm not silly. She looked like she was going to crack up. I was so confused. I think I even cried. Little did I know that she knew me better than I knew myself.
I am silly. I love being silly. I wish I still had that shirt. For that matter, I wish Aunt Jane was still here.
It's funny how you adopt the smallest things from people that you spend time with but you never realize that their mannerisms became yours until a sudden moment of clarity.
Tonight I was watching 101 Ways to Leave a Gameshow with the kids. I love the absurdity. It's silly, like me. The kids and I were sitting on the couch laughing and then the CEO, shifted to lay down.
"If you're laying down, you must be tired. Go to bed. A couch is not for laying on."
Where the hell did that come from? I have no problem with laying on the couch. Never did. In fact, when I was 11 and stayed at Aunt Jane's house for a few weeks, I did the same thing and she said,
"If you're laying down, you must be tired. Go to bed. A couch is not for laying on."
It was a sudden moment of deja vu.
I missed her so much. As I grew older, I would visit just to say hello. I loved sitting in her chair listening to the radio with Uncle Pete, while she made a huge meal for dinner. I loved the bologna sandwiches for lunch and the super fresh salads in the summer.
Aunt Jane was the first brave soul to get in a car with me when I got my license. I drove right to her house and picked her up so we could go shopping. Two blocks into it, I went down a street the wrong way. "We don't have to tell your mother that now, for sure." LOL.
She's been gone for quite a while and my kids missed out on knowing an exceptional woman but maybe they are getting a bit of her when I make bologna sandwiches and huge salads. And maybe they are getting more than that...
She lived a full life with Uncle Pete, despite his blindness, and we're living a full life despite Autism.
Sunday, July 3, 2011
CDC Statistics for Autism
CDC Statistics
Data & Statistics
On this Page
Prevalence
- It is estimated that between 1 in 80 and 1 in 240 with an average of 1 in 110 children in the United States have an ASD. [Read article]
- ASDs are reported to occur in all racial, ethnic, and socioeconomic groups, yet are on average 4 to 5 times more likely to occur in boys than in girls. However, we need more information on some less studied populations and regions around the world. [Read article]
- If 4 million children are born in the United States every year, approximately 36,500 children will eventually be diagnosed with an ASD. Assuming the prevalence rate has been constant over the past two decades, we can estimate that about 730,000 individuals between the ages of 0 to 21 have an ASD.
- Studies in Asia, Europe, and North America have identified individuals with an ASD with an approximate prevalence of 0.6% to over 1%. A recent study in South Korea reported a prevalence of 2.6%. [Data table
] 
Approximately 13% of children have a developmental disability, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism. [Read article
]
Learn more about prevalence of ASDs »
Learn more about the ADDM Project »
Learn more about the MADDSP Project »
Risk Factors and Characteristics
- Studies have shown that among identical twins, if one child has an ASD, then the other will be affected about 60-96% of the time. In non-identical twins, if one child has an ASD, then the other is affected about 0-24% of the time. [1]
- Parents who have a child with an ASD have a 2%–8% chance of having a second child who is also affected. [1]
- It is estimated that about 10% of children with an ASD have an identifiable genetic, neurologic or metabolic disorder, such as fragile X or Down syndrome. As we learn more about genetics, the number of children with an ASD and an identifiable genetic condition will likely increase. [Read summary] [Read summary]
- A report published by CDC in 2009, shows that 30-51% (41% on average) of the children who had an ASD also had an Intellectual Disability (intelligence quotient <=70). [Read article]
Intelligence quotient (IQ) of children aged 8 years with an autism spectrum disorder (ASD) for whom psychometric test data were available,* by site and sex (IQ) score-Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2006
[D]
- Studies show that 5% of people with an ASD are affected by fragile X and 10% to 15% of those with fragile X show autistic traits. [Read summary]
- One to four percent of people with ASD also have tuberous sclerosis. [Read summary]
- About 40% of children with an ASD do not talk at all. Another 25%–30% of children with autism have some words at 12 to 18 months of age and then lose them. Others may speak, but not until later in childhood. [2]
Diagnosis
- The median age of earliest ASD diagnosis is between 4.5 and 5.5 years, but for 51–91 percent of children with an ASD, developmental concerns had been recorded before three years of age. [Read article]
- Studies have shown that about one third of parents of children with an ASD noticed a problem before their child’s first birthday, and 80% saw problems by 24 months. [Read summary]
- Research has shown that a diagnosis of autism at age 2 can be reliable, valid, and stable. [1] But despite evidence that ASDs can often be identified at around 18 months, many children do not receive final diagnoses until they are much older. [Read article]
Economic Costs
- Recent studies have estimated that the lifetime cost to care for an individual with an ASD is $3.2 million. [Read article]
- Individuals with an ASD had average medical expenditures that exceeded those without an ASD by $4,110–$6,200 per year. On average, medical expenditures for individuals with an ASD were 4.1–6.2 times greater than for those without an ASD. Differences in median expenditures ranged from $2,240 to $3,360 per year with median expenditures 8.4–9.5 times greater. [Read summary]
References
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