"It's okay. We're okay. They are going to be okay."
When the diagnosises of Autism started pouring in during December '09 and January '10. I was overwhelmed...and scared, so fucking afraid. Was our life, our dreams over as we knew them? Every marker I saw filled me anxiety. The conversations with psychiatrists about their potential and struggles, scrapping money together to get them to next great specialist. Choosing to pay co-pays over buying food, fainting because I skipped one too many days of eating. Thinking the worst thing that could ever happen after all this was my husband losing his job. God couldn't be so cruel.
And then he did.
My hair started falling out from the stress. We depleted our savings, I kept making doctors appointments. Handsome started rocking. He was diagnosed in April 2010. Seventy-three specialists in all.
I couldn't sleep.
The nightmares were horrific. Everyone died except me and I was helpless. The fear that I couldn't control anything was overwhelming. I walked through the house continuously while everyone slept. I checked their pulses and listened to them breathe. I couldn't sleep for more than 15 minutes at a time. My body was in agony. I was exhausted.
I had chest pains.
I laid in a hospital bed listening to the doctors discuss my heart. It could be a heart attack or a panic attack. My history of heart failure during the triplet pregnancy was chaining me to that bed. I fell asleep and the doctors saw me have a nightmare. They asked me what made me so afraid.
"My life."
I went home many hours later. The CEO was screaming, Bugabuga was leaning against the couch because she didn't have the strength needed to stand without getting tired. The Baby was repeating a tv show verbatium. Handsome was laying inert in his swing, just like a newborn except he was 15 months old.
He needed help.
Early Intervention said that he didn't have enough delays. They refused to give him therapy. I cried. The state worker filling out the paperwork said that I wanted him to be autistic. I understood the meaning of rage. I pray about her often. I don't pray for her soul. I pray one day she understands.
We sued the NYC Early Intervention Program.
Handsome was re-evaluated. The reports said "Borderline mental intellect." I'll never forgive that state worker for making me get another evaluation; for making me see those words. It haunted me. I was so afraid of the unknown. I began to get anxious going outside. I was terrified when I was separated from the kids and my husband.
We won.
He was given full therapy.
We found our rythm. The girls prospered. Handsome made a complete turnaround and no longer has a cognitive delay. We keep trucking'.
I got a job. My hair stopped falling out in clumps. I started sleeping a couple hours at a time.
My husband worked with Handsome tirelessly while I toiled away. A year passed. It's time to find the right elementary school. It's time to get the label of Autism removed, they made enough progress.
"I still think the diagnosis stands."
I numbly listened to the neuro. The diagnosis still stands."Integrated classrooms. High functioning."
The diagnosis still stands.
I started to mourn the dreams that were on hold in my mind. I stopped sleeping again. The nightmares started again.
My poor hair.
The NYC Department of Education can't promise that the girls will be in the same school. "They have to be fair."
As we search for a spot for three autistics while most others search for one, I'm struck by the lack of help, the lack of caring for us as a family.
The lack of fairness.
As we run into wall after wall, my sleep diminishes and I feel the razor focus of a mother bear fighting to save her children's life. I'm not tired. I'm not hungry.
I will fight to the bitter end.
I'm terrified.
Wednesday, February 1, 2012
Saturday, January 28, 2012
Mommy's Miracles: A lesson learned- Our search for the perfect Kinde...
Mommy's Miracles: A lesson learned- Our search for the perfect Kinde...: It's time to look for a school for the girls. They are scheduled to start kindergarten in September. Right now, Baby is by herself at a pres...
A lesson learned- Our search for the perfect Kindergarten
It's time to look for a school for the girls. They are scheduled to start kindergarten in September. Right now, Baby is by herself at a prestigious private school that has an integrated program. I think the hype is overblown and honestly, I think she would have learned more at Bugabuga and the CEO's school but this was her chance to be normal. And we needed that, so we jumped at the opportunity.
We walked in to the little nursery school and were met by the social worker. Her smile was fake and her ego was palatable.
"We only have one spot available. I know when we spoke, an hour ago, we had two spots but someone else took one." She shrugged like she was cute and charming.
"How is that possible? You told me that we had the first appointment."
If you're looking for a spot for all of your children, we will not accommodate you. If you can't accept that, we'll cancel the appointment. Pick one to be evaluated, only one."
I looked helplessly at my husband. OH my God! She was making us choose which one was higher functioning. I hated her in the instant and two years later, I still seethe when I think of her. The Baby was exceptional of course and was accepted. We sent her on her merry way and any time we have any contact with the social worker, I deferred to my husband. He takes her calls. He is their primary contact. I can barely speak to her without wanting to vomit.
My handsome was accepted there too but they wouldn't bring him in until after the Baby graduated. It was like that school had a one child limit for our family in particular.
We let the spot go and Handsome started school with Bugabuga and the CEO early, like we wanted. He is excelling.
Each morning we put the three of them on the bus and Baby sadly sits and waits for her bus. Come hell, or high water that won't happen to her in September. Even if we have to sue the New York City Department of Education, they will be together.
We walked in to the little nursery school and were met by the social worker. Her smile was fake and her ego was palatable.
"We only have one spot available. I know when we spoke, an hour ago, we had two spots but someone else took one." She shrugged like she was cute and charming.
"How is that possible? You told me that we had the first appointment."
If you're looking for a spot for all of your children, we will not accommodate you. If you can't accept that, we'll cancel the appointment. Pick one to be evaluated, only one."
I looked helplessly at my husband. OH my God! She was making us choose which one was higher functioning. I hated her in the instant and two years later, I still seethe when I think of her. The Baby was exceptional of course and was accepted. We sent her on her merry way and any time we have any contact with the social worker, I deferred to my husband. He takes her calls. He is their primary contact. I can barely speak to her without wanting to vomit.
My handsome was accepted there too but they wouldn't bring him in until after the Baby graduated. It was like that school had a one child limit for our family in particular.
We let the spot go and Handsome started school with Bugabuga and the CEO early, like we wanted. He is excelling.
Each morning we put the three of them on the bus and Baby sadly sits and waits for her bus. Come hell, or high water that won't happen to her in September. Even if we have to sue the New York City Department of Education, they will be together.
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.
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