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Wednesday, August 31, 2011
Welcome To Holland
Welcome To Holland
by
Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
by
Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
--I read this today. It touched me so deeply. It is exactly how I am feeling. I guess it is true there are other people who know how I feel and know what I'm going through.
Tuesday, August 30, 2011
Autism is going to be my friend. We will play nice.
It's been a while since I last posted. This family never stops, what can I say? I started this blog to get out some of my Mommy thoughts, about birthing, and the first year. Well life likes to chuck lemons at me and laugh. I am opening my mind, and heart and reaching deep inside to express my true thoughts and feelings. So here goes nothing.
Joey has been diagnosed with Autism Spectrum Disorder. Whats that mean in english? Autism is a complex developmental disability that causes problems with social interaction and communication. Symptoms usually start before age three and can cause delays or problems in many different skills that develop from infancy to adulthood. Here's a quick time line,
12 months-Walking by himself, feeding himself, saying Dada, started having once a week temper tantrums
15 months-Shaking head yes or no to simple questions, held book in the correct way, fed himself with fork, began having once a day tantrums
18 months-Common everyday words used Dada, Mama, up, doggy, kitty, no, and yes, Said once then not again words, Grandma, Grandpa, Meatball, Apple, I did it, Stop, Duck, Moo, Vroom, began to only want to play independently
22 months-Stopped using those everyday words except Dada, and Up, Having 1-15 temper tantrums daily, Stopped adding new words to his vocabulary, Social interaction with other children was limited even in a play place
At the 23 month mark Nick and I started talking about all these things we were noticing. We talked about how hard everything was with Joey to complete even the simplest task. That he didn't communicate with us, except for pulling our hands to the kitchen, then just stood there or cried till we played the guessing game and figured out what he wanted. It concerned us that he was regressing in his speech. We made an appointment at his pediatricians office for the following week. His wonderful Doctor did a full urine, and blood work up to see if anything alerted us. Everything came back normal. He then made 3 referrals, one to an audiologist, maybe the kid can't hear us, one to the South King County Early Intervention Program(SKIP), and one to Seattle Children's developmental services. The first appointment was with Skip. The lovely ladies asked a 100 and 1 questions regarding who Joey really is. It was by no surprise to Nick and I, that in fact Joey qualified for services, and that he was on the Autism Spectrum. We are the King and Queen of Google research. We pretty much knew what was going on, we just needed someone else to confirm it.
I am a loving warm spirited mother. I love my son more than anything. To not have him be able to show affection, or tell me that something hurts, or look me in my eye breaks my heart into a million tiny little pieces. When I was pregnant all I prayed for was a healthy baby. I didn't so much care if he was a he/she, or he had an extra toe, just so long as he was healthy. Learning that Joey has ASD in a way knocks down my belief that he is healthy. Nick has been surprisingly open and his faith has stayed strong through this thus far. He is so strong, reminds me of a Daddy lion.
Next, we headed to the audiologist, though it was already presumed he could hear, he just couldn't make sense of the words. We discovered at the last visit with the pediatrician Joey has a keen sense of people with gloves, who will cause harm. Autistic children already have discomfort when you change up their normalcy, but then you add bright lights, gloves, and probing objects and its a recipe for disaster. Joey knew the moment we walked in to the building that it was not going to be fun. He screamed and cried at the sight of the doctor. Needless to say the hearing test was an epic fail. I won't be rescheduling that one any time soon.
SKIP recommended Nick and I take part in a class called, More than Words, by the Hanen Centre. We took our orientation class last Tuesday night. It is a training program for parents just like us. Their goal is made to help teach the parents how to use our child's preferences, learning styles, and stage of communication to set realistic goals, why our child behaves the was he does, and how we can use everyday activities to build his knowledge and social skills. I am very excited to be part of the 12 week workshop. I really believe everything happens for a reason, this is the first time they are offering the class in our area, and it is paid for by SKIP, and it started exactly a week after we met with SKIP for the first time. If that doesn't say hello? Its meant to be, then I don't know what does.
I had my tonsils out on Thursday. I've been stuck in bed on the internet and reading books. The first book I read was, Jenny McCarthy, Louder than words, and Kim Stagliano, All I can Handle. These two woman are brave, loud, and less than shy when it comes to the Autistic community. They take a stand against blowing off Autism as just another label. They are in belief that Autism has a cure. I have learned a tremendous amount of information from these two books. I shared a tear, or two, an laugh out loud, and now I'm also sharing my story like they have.
Today was yet another big day for little Joey monkey as he had his first meeting with his speech therapist. Her name is Chelsea, and I have a feeling you will be hearing about her often. She is going to come to our home ever Tuesday at 9 am. She is my new BFF. We have decided that our goals are realistic, our treatment plan is in the making, and now all we have to do is practice. Practice makes perfect. Just while she was here, Joey had to show off his skills, he said, baaaa, and up up up. Some days the kid does not utter a single word, in front of the therapist he shows off! Go figure.
I also made Joey an appointment to see a DAN!, or Defeat Autism Now Doctor. I'll put more information in my next post about that experience later.
As for now, I am keeping my tears of sadness to myself. I am keeping my faith strong. I am researching and learning everything I can. I am staying true to my biggest job, as a mother your job is to protect your child from harm in anyway shape of form. Lastly, I am working so much harder at my marriage. Most special needs marriages end in divorce, not this one. I know my son is going to be okay, in fact he will be perfect.
Joey has been diagnosed with Autism Spectrum Disorder. Whats that mean in english? Autism is a complex developmental disability that causes problems with social interaction and communication. Symptoms usually start before age three and can cause delays or problems in many different skills that develop from infancy to adulthood. Here's a quick time line,
12 months-Walking by himself, feeding himself, saying Dada, started having once a week temper tantrums
15 months-Shaking head yes or no to simple questions, held book in the correct way, fed himself with fork, began having once a day tantrums
18 months-Common everyday words used Dada, Mama, up, doggy, kitty, no, and yes, Said once then not again words, Grandma, Grandpa, Meatball, Apple, I did it, Stop, Duck, Moo, Vroom, began to only want to play independently
22 months-Stopped using those everyday words except Dada, and Up, Having 1-15 temper tantrums daily, Stopped adding new words to his vocabulary, Social interaction with other children was limited even in a play place
At the 23 month mark Nick and I started talking about all these things we were noticing. We talked about how hard everything was with Joey to complete even the simplest task. That he didn't communicate with us, except for pulling our hands to the kitchen, then just stood there or cried till we played the guessing game and figured out what he wanted. It concerned us that he was regressing in his speech. We made an appointment at his pediatricians office for the following week. His wonderful Doctor did a full urine, and blood work up to see if anything alerted us. Everything came back normal. He then made 3 referrals, one to an audiologist, maybe the kid can't hear us, one to the South King County Early Intervention Program(SKIP), and one to Seattle Children's developmental services. The first appointment was with Skip. The lovely ladies asked a 100 and 1 questions regarding who Joey really is. It was by no surprise to Nick and I, that in fact Joey qualified for services, and that he was on the Autism Spectrum. We are the King and Queen of Google research. We pretty much knew what was going on, we just needed someone else to confirm it.
I am a loving warm spirited mother. I love my son more than anything. To not have him be able to show affection, or tell me that something hurts, or look me in my eye breaks my heart into a million tiny little pieces. When I was pregnant all I prayed for was a healthy baby. I didn't so much care if he was a he/she, or he had an extra toe, just so long as he was healthy. Learning that Joey has ASD in a way knocks down my belief that he is healthy. Nick has been surprisingly open and his faith has stayed strong through this thus far. He is so strong, reminds me of a Daddy lion.
Next, we headed to the audiologist, though it was already presumed he could hear, he just couldn't make sense of the words. We discovered at the last visit with the pediatrician Joey has a keen sense of people with gloves, who will cause harm. Autistic children already have discomfort when you change up their normalcy, but then you add bright lights, gloves, and probing objects and its a recipe for disaster. Joey knew the moment we walked in to the building that it was not going to be fun. He screamed and cried at the sight of the doctor. Needless to say the hearing test was an epic fail. I won't be rescheduling that one any time soon.
SKIP recommended Nick and I take part in a class called, More than Words, by the Hanen Centre. We took our orientation class last Tuesday night. It is a training program for parents just like us. Their goal is made to help teach the parents how to use our child's preferences, learning styles, and stage of communication to set realistic goals, why our child behaves the was he does, and how we can use everyday activities to build his knowledge and social skills. I am very excited to be part of the 12 week workshop. I really believe everything happens for a reason, this is the first time they are offering the class in our area, and it is paid for by SKIP, and it started exactly a week after we met with SKIP for the first time. If that doesn't say hello? Its meant to be, then I don't know what does.
I had my tonsils out on Thursday. I've been stuck in bed on the internet and reading books. The first book I read was, Jenny McCarthy, Louder than words, and Kim Stagliano, All I can Handle. These two woman are brave, loud, and less than shy when it comes to the Autistic community. They take a stand against blowing off Autism as just another label. They are in belief that Autism has a cure. I have learned a tremendous amount of information from these two books. I shared a tear, or two, an laugh out loud, and now I'm also sharing my story like they have.
Today was yet another big day for little Joey monkey as he had his first meeting with his speech therapist. Her name is Chelsea, and I have a feeling you will be hearing about her often. She is going to come to our home ever Tuesday at 9 am. She is my new BFF. We have decided that our goals are realistic, our treatment plan is in the making, and now all we have to do is practice. Practice makes perfect. Just while she was here, Joey had to show off his skills, he said, baaaa, and up up up. Some days the kid does not utter a single word, in front of the therapist he shows off! Go figure.
I also made Joey an appointment to see a DAN!, or Defeat Autism Now Doctor. I'll put more information in my next post about that experience later.
As for now, I am keeping my tears of sadness to myself. I am keeping my faith strong. I am researching and learning everything I can. I am staying true to my biggest job, as a mother your job is to protect your child from harm in anyway shape of form. Lastly, I am working so much harder at my marriage. Most special needs marriages end in divorce, not this one. I know my son is going to be okay, in fact he will be perfect.
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