lorac4disney
Mouseketeer
- Joined
- Sep 28, 2008
- Messages
- 377
My 11 year old daughter has a primary diagnosis of Severe Autism. During her DD evaluation when she was 2 yo, she broke my nose, blacked my eye, and busted my lip so bad that I had to have stitches during her wild tantrum over what they were trying to test on her. My husband (her father) tried to help, but that too was in vain. She was a wildcat on the attack out of fear of the newness of the unfamiliar. She broke his jaw with a single kick straight to his face before escaping to the comfort of her room where we found her twirling a string of pink beads, rocking and flapping with a vengance with her comfort toys arranged in a semi-circle around her (all pink or bright pink, 18 all told).
Not understanding what was wrong, I pleaded with "the experts" for help. Fix my baby. Make it all better. Sobbing with my head in my hands while we sat in my living room/kitchen area, seven out of nine of my windows shattered due to her extreme outbursts, they told me to put her in an institution and forget about her. They told me that she would never know me or that I was her mother or even begin to comprehend our relationship. They told me that at two, I was unable and ill equipped to handle her regular and routine violent outbursts. They said it would only get worse as she got older. They told me to committ her to the residential center and forget that I had her and focus on my other children.
Needless to say, I finally got pissed. THIS IS MY BABY THAT THEY ARE TALKING ABOUT! My precious girl! I lost it. One thing that I have to say about myself is that I have tremendous clarity of thought and tongue whenever I get pissed off. It's like everything else slows down and I have the ability to say what I actually mean with ample time to say it before anyone else can even react or try to respond.
Nine highly educated and trained experts in their fields were telling me this in one joint voice using a lowly family counselor to speak their minds. BIG MISTAKE. This is MY BABY. They don't know her and they darn sure didn't know me or what I could possibly handle. Not even I had any scope of that up until that point.
One irritating doctor stopped me as I was kicking them out. She grabbed my arm and told me that it was good that I was pissed off. She said that just might give my daughter a fighting chance. Needless to say, I was wayyyyy too pissed off to even care about her ignorant opinion any longer. I narrowed in on her and really gave her a piece of my mind.
Studying at home, I taught myself about autism and sign language with the help of one of my friends who served as an official translator for the Boy Scouts (she has a Down's daughter who was born on my birthday and who happens to be my Goddaughter). I learned this for my goddaughter before I even conceived my own daughter. I started signing with my daughter.
An avidly supreme ball bouncer (on the level of savant with her extreme ability), I forced my daughter to learn the sign for ball. It was rough. It was nearly cruel, but I managed to break through to her world with that single word. We played ball for hours on end each and every day. I forced her to sign ball when she wanted me to pass it to her. After nearly three months of nonstop insistance, she finally signed the word to me. I laughed and cried as I passed her the ball.
She recognized the result instantly. She started signing it with a big grin on her blossom face. We had a connection. We had a thread to start with. She threw me the ball. She'd sign and grin, eyes hopeful. I'd throw it back and reaffirm the sign while saying it. "Ball."
It was our first word. It was our only connection. We signed, but quickly adapted it to PECS (Picture Exchange Communication System) as my sign language was extremely limited. I knew enough to barely get by, but not near enough to hold a full conversation on the level I needed to. I had enrolled for further sign classes, but found myself overwhelmed by her immediate needs as well as that of my family's. I had to drop out.
We resorted to PECS and then computer based communication. My daughter couldn't speak, but knew how to read and was able to type out grammatically correct sentences on the computer using a beta test program called Baldi which my computer programmer baby brother hooked us up with. All this before she was able to utter a two word sentence.
Then she went into kindergarten. She couldn't speak except for maybe a few random words blurted out of sheer frustration. Still in diapers despite thousands of hours of potty training, she was like an infant. Sending her off to school ripped my heart out.
I shouldn't have worried so much. Even without words, my daughter is naturally expressive. She had no problem at all with communicating her needs to everyone. She was extremely patient with everyone as she taught them all how to understand her. She'd clap for them whenever they would finally get what she meant and even go so far as to give them one of her precious comfort toys when they actually got it. They taught her verbal communication. She taught them all non-verbal communication.
My daughter is now eleven and in the fifth grade. To speak to her or hold a conversation with her, you can not tell that she is autistic AT ALL except for a slight amount of shyness. She attends the regular class for the most part. She attends resource for math and language, not because she is behind her peers, but because she is bored by it. She has a knack for adopting languages as though they are her native tongue. I speak a few myself with English being a second/third language for me, but she is even better. She is a true sponge. I have photographic memory, but she surpasses that. She tutors her older brother in his advanced math (cal and trig) classes.
Despite her progress and advances, she is not normal. She has mild CP (or neuromuscular difficulties as her doctors put it). She can walk with the assistance of corrective inserts in her shoes. Sometimes, she has to wear ankle braces but only when absolutely necessary such as when her legs need more conditioning to match her growing weight. She has hypotonia with extreme weakness in her hands. She has tracheomalcia (extremely narrowed windpipe) coupled with malformed lungs (too few air sacs coupled with extremely small lungs). They say all of this was because of her extreme prematurity. It really breaks my heart considering that her birth was induced due to my history of rapid labors (having already lost my first daughter, Robin, because of this).
I don't want to handicap my child, but I am hedging on getting her a stroller as a wheelchair. She is capable of a lot, but she tires easily. She's too big for me to carry anymore. I am strong, but not that strong anymore. Being eleven, she is too big for a typical stroller.
My heart is tearing. I want her to enjoy our vacation just like any other kid. She's too young for a motorized cart rental at WDW although she has used these in the past during our vacations at other places and drives them well.
We are not on any public assistance programs so everything we do comes strictly out of pocket. Our insurance covers medically necessary stuff only. I had cancer three (almost four) years ago in my groin area and had to have an extreme extensive exisional biopsy done on both sides. My mobility is also limited although I can push my way through the pain for my family. I can walk with a funny, shortened jot as my insides catch too much for a full stride.
If I get a cart for myself, can I let my daughter ride on my lap when she gets exhausted? I can't imagine trying to push her in a stroller or wheelchair. My stepdaughter will have two 3 and under children in her own stroller. My husband's ex (who is also going with us on my dime) is also of poor health, having had a kidney transplant and will most likely need her own cart.
My husband says that he will push our daughter in a wheelchair if need be, but I want him to enjoy his vacation as well. He deals with enough hardship as it is in everyday life. He's no saint, but he's stomached much more than most men I know ever would have.
Even if Disney doesn't provide it, does anyone know of a company near Disney where we can rent three electric carts? One for an eleven year old child? Mine is pre-approved by insurance due to my x-cancer. If I rent my own cart and let my clearly disabled daughter ride on it with me, will anyone try to stop me and toss us out of the park?
Not understanding what was wrong, I pleaded with "the experts" for help. Fix my baby. Make it all better. Sobbing with my head in my hands while we sat in my living room/kitchen area, seven out of nine of my windows shattered due to her extreme outbursts, they told me to put her in an institution and forget about her. They told me that she would never know me or that I was her mother or even begin to comprehend our relationship. They told me that at two, I was unable and ill equipped to handle her regular and routine violent outbursts. They said it would only get worse as she got older. They told me to committ her to the residential center and forget that I had her and focus on my other children.
Needless to say, I finally got pissed. THIS IS MY BABY THAT THEY ARE TALKING ABOUT! My precious girl! I lost it. One thing that I have to say about myself is that I have tremendous clarity of thought and tongue whenever I get pissed off. It's like everything else slows down and I have the ability to say what I actually mean with ample time to say it before anyone else can even react or try to respond.
Nine highly educated and trained experts in their fields were telling me this in one joint voice using a lowly family counselor to speak their minds. BIG MISTAKE. This is MY BABY. They don't know her and they darn sure didn't know me or what I could possibly handle. Not even I had any scope of that up until that point.
One irritating doctor stopped me as I was kicking them out. She grabbed my arm and told me that it was good that I was pissed off. She said that just might give my daughter a fighting chance. Needless to say, I was wayyyyy too pissed off to even care about her ignorant opinion any longer. I narrowed in on her and really gave her a piece of my mind.
Studying at home, I taught myself about autism and sign language with the help of one of my friends who served as an official translator for the Boy Scouts (she has a Down's daughter who was born on my birthday and who happens to be my Goddaughter). I learned this for my goddaughter before I even conceived my own daughter. I started signing with my daughter.
An avidly supreme ball bouncer (on the level of savant with her extreme ability), I forced my daughter to learn the sign for ball. It was rough. It was nearly cruel, but I managed to break through to her world with that single word. We played ball for hours on end each and every day. I forced her to sign ball when she wanted me to pass it to her. After nearly three months of nonstop insistance, she finally signed the word to me. I laughed and cried as I passed her the ball.
She recognized the result instantly. She started signing it with a big grin on her blossom face. We had a connection. We had a thread to start with. She threw me the ball. She'd sign and grin, eyes hopeful. I'd throw it back and reaffirm the sign while saying it. "Ball."
It was our first word. It was our only connection. We signed, but quickly adapted it to PECS (Picture Exchange Communication System) as my sign language was extremely limited. I knew enough to barely get by, but not near enough to hold a full conversation on the level I needed to. I had enrolled for further sign classes, but found myself overwhelmed by her immediate needs as well as that of my family's. I had to drop out.
We resorted to PECS and then computer based communication. My daughter couldn't speak, but knew how to read and was able to type out grammatically correct sentences on the computer using a beta test program called Baldi which my computer programmer baby brother hooked us up with. All this before she was able to utter a two word sentence.
Then she went into kindergarten. She couldn't speak except for maybe a few random words blurted out of sheer frustration. Still in diapers despite thousands of hours of potty training, she was like an infant. Sending her off to school ripped my heart out.
I shouldn't have worried so much. Even without words, my daughter is naturally expressive. She had no problem at all with communicating her needs to everyone. She was extremely patient with everyone as she taught them all how to understand her. She'd clap for them whenever they would finally get what she meant and even go so far as to give them one of her precious comfort toys when they actually got it. They taught her verbal communication. She taught them all non-verbal communication.
My daughter is now eleven and in the fifth grade. To speak to her or hold a conversation with her, you can not tell that she is autistic AT ALL except for a slight amount of shyness. She attends the regular class for the most part. She attends resource for math and language, not because she is behind her peers, but because she is bored by it. She has a knack for adopting languages as though they are her native tongue. I speak a few myself with English being a second/third language for me, but she is even better. She is a true sponge. I have photographic memory, but she surpasses that. She tutors her older brother in his advanced math (cal and trig) classes.
Despite her progress and advances, she is not normal. She has mild CP (or neuromuscular difficulties as her doctors put it). She can walk with the assistance of corrective inserts in her shoes. Sometimes, she has to wear ankle braces but only when absolutely necessary such as when her legs need more conditioning to match her growing weight. She has hypotonia with extreme weakness in her hands. She has tracheomalcia (extremely narrowed windpipe) coupled with malformed lungs (too few air sacs coupled with extremely small lungs). They say all of this was because of her extreme prematurity. It really breaks my heart considering that her birth was induced due to my history of rapid labors (having already lost my first daughter, Robin, because of this).
I don't want to handicap my child, but I am hedging on getting her a stroller as a wheelchair. She is capable of a lot, but she tires easily. She's too big for me to carry anymore. I am strong, but not that strong anymore. Being eleven, she is too big for a typical stroller.
My heart is tearing. I want her to enjoy our vacation just like any other kid. She's too young for a motorized cart rental at WDW although she has used these in the past during our vacations at other places and drives them well.
We are not on any public assistance programs so everything we do comes strictly out of pocket. Our insurance covers medically necessary stuff only. I had cancer three (almost four) years ago in my groin area and had to have an extreme extensive exisional biopsy done on both sides. My mobility is also limited although I can push my way through the pain for my family. I can walk with a funny, shortened jot as my insides catch too much for a full stride.
If I get a cart for myself, can I let my daughter ride on my lap when she gets exhausted? I can't imagine trying to push her in a stroller or wheelchair. My stepdaughter will have two 3 and under children in her own stroller. My husband's ex (who is also going with us on my dime) is also of poor health, having had a kidney transplant and will most likely need her own cart.
My husband says that he will push our daughter in a wheelchair if need be, but I want him to enjoy his vacation as well. He deals with enough hardship as it is in everyday life. He's no saint, but he's stomached much more than most men I know ever would have.
Even if Disney doesn't provide it, does anyone know of a company near Disney where we can rent three electric carts? One for an eleven year old child? Mine is pre-approved by insurance due to my x-cancer. If I rent my own cart and let my clearly disabled daughter ride on it with me, will anyone try to stop me and toss us out of the park?
In a nutshell, know all the available resources and options, and then just go and see what happens. If the first way doesn't work, you know the Plan B and Plan C. 
