Hi,
This is not related to Disney except to the fact that my little kiddo shares some of the stories I have read of other ASD kids while at the world. My trouble is that I am a frustrated parent not knowing where to turn, or what is out there, or maybe I'm way off base. I will give back ground on my son "J". J was born at 38 weeks, normal healthy pregnancy besides me having type I diabetes.
He came into the world screaming. He was impossible to console. He would scream for hours at a time and would sometimes stop when he was walked around, he would cry until I cried. He spit up excessively. His dr. at the time blamed his excessive crying (which was severe enough that it was noted in his chart 2 days after birth) on my drinking a (1) diet coca cola a day during my pregnancy and no notice was given to his spitting up.
J also drooled horribly, he wore a bib for a year because he drooled so much. J sat on time, would not crawl, and began walking (running) at 10 months. As far as potty training, he was "pee" trained immediately, but doing the other didn't seem to register. Once he began walking he was not as fussy, but he was driven by a eternal internal motor
and had no fear.
He also suffered to extreme seperation anxiety. He began to attach to my mother "cracker", so it was only me and my mother who could watch him. If anyone else would watch him, he would scream and meltdown for approximately 1/2 hour.
He also became fascinated with spinnng things, he would sceam and whine until we took him to see the ceiling fans in the stores. He would and still does identifies people's vehicles by the wheels and rims they have. His fascination also took him to cars and trains, which he would line up, and became frustrated if you took a train out of line to "play" with him. He still plays with his toys a certain way, and his younger brother MUST listen to him and do what he says when they play together.
He began speech therapy at age two. He was also sent to a child psychiatrist to see about autism. This was shot down because J maintained eye contact. He was also screened and scored low developmentally from the local child developmental center, but only because he would not participate in screening and clung to me.
We finally found one speech therapist that J would allow to work with him. I was still required to be in the same room, or else the meltdown would begin. She would have to "corner" him with her chair when working with him to keep him from running around the room. When working on the floor he would wiggle, donkey kick, and eventually become frustrated. She suggested testing him for sensory issues. I filled out the eval. and he was said to have sensory integration dysfunction. The occupational therapist that did the eval was too aggressive for J, and I declined services.
He then was diagnosed with ADHD at 3 when he began attending special ed preschool. He was then put on Risperdal to help him "slow" down and maybe help with sleeping. He had terrible sleeping issues (still does). They also started trying different ADHD meds.
J became obsessed with my mother. He would cry and go into a rage whenever he couldn't be with her. He would start these rages with begging, which led up to whining and crying, and then he would kick and scream, after the rages which lasted anywhere from 1-2 hours he would lay in the fetal position for about 30 minutes. During these rages he would throw rocks at cars, hurt himself by pulling on his testicles, scratch, and become destructive by throwing toys and blankets. It became so severe that if my mom had something to drop off at my house, she would drive up and leave it by my gate so J wouldn't see her. These rages led to the diagnosis of oppisitional defiant disorder.
Fast forward to school years, J is very good at socializing with adults. He has a charm about him that is amazing (he seems shy, but normal)! But with peers J is at a loss. He use to attack the neighbor child because J was made to share his toys (this was at the age of 6). He doesn't seem to take social cues from peers. If they are ignoring him or choosing to not talk to him, he just continues to bug them or repeat their name over and over again. If they won't play what he wants, he just leaves and will run or spin alone on the playground. He says things about them not liking him.
He has been seeing a therapist intermittely that sent him to a child psychologist that said that he was not autistic, but had traits of PDD-NOS. He also diagnosed him with anxiety and learning disorder. J was also sent to a pediatrician that specializes in behaviors and she said that he had multisystem developmental disorder.
In school he struggles, his teacher wears a microphone with a speaker on his desk to keep him focused. He is seen by a occupational therapist that helps him with his severe sensory issues. He sees a speech therapist. He also goes to resource to help him with learning issues. The problem with the school is that they think he doesn't have any problems except anxiety and sensory issues. So, they are thinking of exiting him. Although, the school staff has never seen him unmedicated. Each day he takes a antipsychotic, antidepressant, and ADHD patch.
He called home the other day saying he didn't want to ride the bus because it was too loud, I told him to cover his ears with his hands and that it was only a short ride. When I told the special ed. teacher this, she told me that "these" kids learn how to use it to their advantage. This wasn't the first time he said things like this. Last year he didn't want to go to disney world because "the people were too loud", he cries when we go on journey into you imagination because of the skunk smell, and can't take it when one of his siblings cries. But he is able to talk and help people, he copes well with what he feels. Because of this he doesn't get the help he needs.
He recently went in for a functional test and scored at a 4 year 11 month old level and he is 7 years 6 months old. The low score mainly came from the fact that he still messes his pants everyday, because he says he can't feel it. He is able to maintain bowel control at school with there only being 2-4 accidents in the past 1.5 years, but once he gets home the accidents happen.
He also has terrible eating habits, I think it's sensory, but he eats like a toddler. He doesn't want to use utensils and puts food in his mouth with his fingers and then sucks on his fingers. He doesn't seem to notice food on lips and face. I also answered questions about his behavior when his meds weren't in balance on this eval. Because hearing a 6 year old scream he wants to die during a rage isn't normal. Because of his scores he does receive state medical.
After school, he comes home so bottled up with frustration, anxiety that he is jittery, angry, and homework is nearly impossible. Last year when his meds needed adjusting he took a hammer to his walls, took his clock down and broke out the glass, and would rip his bed sheets off. When his meds wear off in the afternoon he will start giggling this loud laugh and rocking and squirming. But no one sees this except his family.
He is only in 1st grade. I'm afraid of what his future holds. His diagnoses are adhd, SID, anxiety disorder, obsessive compulsive disorder, PDD-NOS traits, speech delay, sleep disorder, ODD, multisystem develpmental disorder, and learning disorder. Still non of these seem to fit the whole picture, and none of them are much they can do anything about in school. I've seen nearly physician in my small town, and don't know what else to do.
J is a very pleasant boy when medicated, but otherwise gets people to say "they need to discipline that boy". Does anyone else have any kiddos like this? What worked, what didn't?
I'm feeling like people are thinking I'm trying to make my little boy sick, but I know he doesn't "see" the world like the rest of us do. They all tell me that his behaviors are because he is trying to "control" me. I know kids are smart little buggers, but these behaviors seem uncontrollable. I'm just trying to make sure he turns into a happy healthy young man. Thanks for listening to my long winded frustration.
This is not related to Disney except to the fact that my little kiddo shares some of the stories I have read of other ASD kids while at the world. My trouble is that I am a frustrated parent not knowing where to turn, or what is out there, or maybe I'm way off base. I will give back ground on my son "J". J was born at 38 weeks, normal healthy pregnancy besides me having type I diabetes.
He came into the world screaming. He was impossible to console. He would scream for hours at a time and would sometimes stop when he was walked around, he would cry until I cried. He spit up excessively. His dr. at the time blamed his excessive crying (which was severe enough that it was noted in his chart 2 days after birth) on my drinking a (1) diet coca cola a day during my pregnancy and no notice was given to his spitting up.
J also drooled horribly, he wore a bib for a year because he drooled so much. J sat on time, would not crawl, and began walking (running) at 10 months. As far as potty training, he was "pee" trained immediately, but doing the other didn't seem to register. Once he began walking he was not as fussy, but he was driven by a eternal internal motor
and had no fear. He also suffered to extreme seperation anxiety. He began to attach to my mother "cracker", so it was only me and my mother who could watch him. If anyone else would watch him, he would scream and meltdown for approximately 1/2 hour.
He also became fascinated with spinnng things, he would sceam and whine until we took him to see the ceiling fans in the stores. He would and still does identifies people's vehicles by the wheels and rims they have. His fascination also took him to cars and trains, which he would line up, and became frustrated if you took a train out of line to "play" with him. He still plays with his toys a certain way, and his younger brother MUST listen to him and do what he says when they play together.
He began speech therapy at age two. He was also sent to a child psychiatrist to see about autism. This was shot down because J maintained eye contact. He was also screened and scored low developmentally from the local child developmental center, but only because he would not participate in screening and clung to me.
We finally found one speech therapist that J would allow to work with him. I was still required to be in the same room, or else the meltdown would begin. She would have to "corner" him with her chair when working with him to keep him from running around the room. When working on the floor he would wiggle, donkey kick, and eventually become frustrated. She suggested testing him for sensory issues. I filled out the eval. and he was said to have sensory integration dysfunction. The occupational therapist that did the eval was too aggressive for J, and I declined services.
He then was diagnosed with ADHD at 3 when he began attending special ed preschool. He was then put on Risperdal to help him "slow" down and maybe help with sleeping. He had terrible sleeping issues (still does). They also started trying different ADHD meds.
J became obsessed with my mother. He would cry and go into a rage whenever he couldn't be with her. He would start these rages with begging, which led up to whining and crying, and then he would kick and scream, after the rages which lasted anywhere from 1-2 hours he would lay in the fetal position for about 30 minutes. During these rages he would throw rocks at cars, hurt himself by pulling on his testicles, scratch, and become destructive by throwing toys and blankets. It became so severe that if my mom had something to drop off at my house, she would drive up and leave it by my gate so J wouldn't see her. These rages led to the diagnosis of oppisitional defiant disorder.
Fast forward to school years, J is very good at socializing with adults. He has a charm about him that is amazing (he seems shy, but normal)! But with peers J is at a loss. He use to attack the neighbor child because J was made to share his toys (this was at the age of 6). He doesn't seem to take social cues from peers. If they are ignoring him or choosing to not talk to him, he just continues to bug them or repeat their name over and over again. If they won't play what he wants, he just leaves and will run or spin alone on the playground. He says things about them not liking him.
He has been seeing a therapist intermittely that sent him to a child psychologist that said that he was not autistic, but had traits of PDD-NOS. He also diagnosed him with anxiety and learning disorder. J was also sent to a pediatrician that specializes in behaviors and she said that he had multisystem developmental disorder.
In school he struggles, his teacher wears a microphone with a speaker on his desk to keep him focused. He is seen by a occupational therapist that helps him with his severe sensory issues. He sees a speech therapist. He also goes to resource to help him with learning issues. The problem with the school is that they think he doesn't have any problems except anxiety and sensory issues. So, they are thinking of exiting him. Although, the school staff has never seen him unmedicated. Each day he takes a antipsychotic, antidepressant, and ADHD patch.
He called home the other day saying he didn't want to ride the bus because it was too loud, I told him to cover his ears with his hands and that it was only a short ride. When I told the special ed. teacher this, she told me that "these" kids learn how to use it to their advantage. This wasn't the first time he said things like this. Last year he didn't want to go to disney world because "the people were too loud", he cries when we go on journey into you imagination because of the skunk smell, and can't take it when one of his siblings cries. But he is able to talk and help people, he copes well with what he feels. Because of this he doesn't get the help he needs.
He recently went in for a functional test and scored at a 4 year 11 month old level and he is 7 years 6 months old. The low score mainly came from the fact that he still messes his pants everyday, because he says he can't feel it. He is able to maintain bowel control at school with there only being 2-4 accidents in the past 1.5 years, but once he gets home the accidents happen.
He also has terrible eating habits, I think it's sensory, but he eats like a toddler. He doesn't want to use utensils and puts food in his mouth with his fingers and then sucks on his fingers. He doesn't seem to notice food on lips and face. I also answered questions about his behavior when his meds weren't in balance on this eval. Because hearing a 6 year old scream he wants to die during a rage isn't normal. Because of his scores he does receive state medical.
After school, he comes home so bottled up with frustration, anxiety that he is jittery, angry, and homework is nearly impossible. Last year when his meds needed adjusting he took a hammer to his walls, took his clock down and broke out the glass, and would rip his bed sheets off. When his meds wear off in the afternoon he will start giggling this loud laugh and rocking and squirming. But no one sees this except his family.
He is only in 1st grade. I'm afraid of what his future holds. His diagnoses are adhd, SID, anxiety disorder, obsessive compulsive disorder, PDD-NOS traits, speech delay, sleep disorder, ODD, multisystem develpmental disorder, and learning disorder. Still non of these seem to fit the whole picture, and none of them are much they can do anything about in school. I've seen nearly physician in my small town, and don't know what else to do.
J is a very pleasant boy when medicated, but otherwise gets people to say "they need to discipline that boy". Does anyone else have any kiddos like this? What worked, what didn't?
I'm feeling like people are thinking I'm trying to make my little boy sick, but I know he doesn't "see" the world like the rest of us do. They all tell me that his behaviors are because he is trying to "control" me. I know kids are smart little buggers, but these behaviors seem uncontrollable. I'm just trying to make sure he turns into a happy healthy young man. Thanks for listening to my long winded frustration.
and am excited to read any responses. I hope it is easier to read. I didn't intend to have a small novel written
, but oh well.
. My younger daughter has both Down syndrome and autism and I worry what her future will be like. Right now she is pretty happy in her own world, but is starting to act out with a lot of stop & drop, hitting, biting, etc.
but that caught my eye and I wanted to respond. It's just a little thing, I know, but the little things help too.
to disABILITIES and thank you for your post. It seems to be an excellent resource which people will find useful here.
